In The Trenches

Everyone Can Use a Helping Hand

2006-11-03T11:20:00.000-05:00

Guest poster Laura blogs at Puddle Of Consciousness.

I have noticed a lot of talk lately about the Mommy Wars. It is sad and wrong that women can’t as a whole be more supportive of other women and their parenting choices.

However, I think that where this is often not true is within the community of parents with kids with special needs. We welcome insight into our situation. We will happily discuss ideas with other parents to make things easier, better, or less difficult for us. If we know of a school that has a fantastic ASD program we will certainly recommend it to others. If we find a store that sells adaptive toys, we share this news. Because we so often can feel alone and frustrated with a situation we never thought would happen to us, and that requires us to become experts in a new area and very vocal advocates for our children, I believe that this causes us to be more willing to help other parents in need. We’ve been there, and if we can make the road any easier for someone else, we are certainly willing to participate.

In that spirit, I am welcoming any thoughts, ideas, or suggestions for a new post to help other parents of kids with special needs. Got a sure-fire method that works for you in regards to IEPs and coordination with school personnel? Have you had success with home-schooling? Found an adaptive toy that your child loves? Know of a method for helping with a sensory issue?

For example, my daughter G never used to sit still in her chair, and I could never figure out how to change this. Then a friend pointed out that G had such a hard time riding a bike because her feet weren’t planted on the ground. She had no perceived stability. I applied this theory to the dinner table and put a small footstool in front of her chair. Once she had something to plant her feet on, she visibly relaxed and could actually sit still through a meal without getting up. It was a small thing, but made a huge difference – and not just at home, but in school as well. A footstool at her desk helped her concentration, and helped her to relax. All of which contributed to better learning.

Whatever your tip, “In the Trenches” wants to know about it. A list of these hints, suggestions and tips will be posted so that everyone can benefit from them.

Support for other parents is crucial in helping us to be the best parents we can be for our very unique and special children. Your ideas and support are very much appreciated.

Send your tips to Laura at lulak@mn.rr.com.

Leaving Triage

2006-10-06T08:57:00.000-05:00

Posted by Kristen

I've watched the summer roar by like an out-of-control train. There were vacations and car trips and juggled schedules between my 8-5 "ebb and flow" job and my husband's condensed summer / early fall wedding photography schedule. There were near nervous breakdowns and one or two bottles of wine consumed in searches for sanity or good, old-fashioned denial. Most recently, there was the return to school and the hope that the time away from the house and the return to a predictable schedule would be the band-aid we'd been seeking for the gaping, open wounds of chaotic household dynamics and tension and fatigue and desperation. School has been a band-aid, but it's one of many of those tiny rectangle adhesives, when what we really needed, we now understand, was a bottomless bag of medical gauze. Triage.

"Oh, she must be having issues with her quirky kid, Bryce," you're thinking. "Just when she thinks she sees progress and improvement, he presents her with something new." Actually, no. Bryce really HAS blossomed in the past year. He will always be "quirky" and intense and "high needs," there is no doubt. But we have a routine, we understand each others' rules and we all seem to work together gracefully most of the time. I don't think any parent could ask for much beyond that, let alone the parent of a kid like Bryce. No, the majority of the challenge lately is coming from Quinn, the one we labeled "easy" and "laid back" and "low maintenance" for so long. What we've denied and ignored until recently has taken on a life of its own and can be denied no longer: we have two challenging kids.

In my personal blog, I recently wrote about this realization, the final blow of which came after a weekend where I questioned myself and the internet about my coping and parenting skills. For years, we've struggled with the dynamics between our two sons, the two sons we thought were separated into "quirky" and "non-quirky" categories. We assumed the struggle with these dynamics stemmed from the fact that one of the two was quirky; it seemed like a logical assumption for - literally - years. That assumption led us down some dead-end roads, though, and at the time, we didn't understand why. We were pulling out our hair and looking at each other in bewilderment and confusion: why isn't this working? Get another band-aid. What threw us off was that, once we had identified unquestionably that Bryce was "high needs," his behaviors, his needs became our benchmark. Quinn's challenges, so very different from Bryce's at similar ages, were lumped into the category of "age-related behaviors" or "phases," and we see now, as we pack the gauze and apply the disinfectant and reach a shaky hand into the bag for more, how unfair that was to both our kids, and to ourselves as parents.

We still don't have all the answers. In many ways, we are back at the beginning; do not pass go, do not collect your sanity. But the denial is gone, and the realization is there that our two kids have distinctly separate and "not average" needs. We have to hope that that is how we start to move from needing triage gauze to needing mere paper cut band-aids and ultimately, if we're lucky, how we move to healing, and beyond healing, to thriving. Both of these quirky kids deserve that.

Good times

2006-08-29T09:12:00.000-05:00

My son, Christopher, has been taking Tae Kwon Do since he was around five years old. We were told about the center by another parent, someone I knew to really value a place that cared about kids. When we mentioned it to Christopher's occupational therapist, she was just thrilled. It turned out that Tae Kwon Do is a sport that many OTs recommend for kids who have Christopher's particular quirks, his trouble with balance, and his sensory issues. So we signed him right up.

Christopher had been in other sports before this, the little YMCA things that teach sportsmanship and teamwork without emphasizing competition. His coaches (parent volunteers) had never, ever understood him. They would sometimes look at him like he was an alien and they'd look at me and Pete like we were the cause of all of Christopher's ills. His first Tae Kwon Do instructor was Mr. Barker. He was the very first person outside the family, besides the OT and the specialists, who really "got" Christopher. He was able to teach him and control him (in the very best way). Mr. Barker valued my child for who he was. I loved him for that.

Just as Christopher was about to transition to the children's class (from the little kid class), Mr. Barker left the center to pursue a degree in teaching. I was very sad and so was Sophie, who, at the tender age of three, had developed quite the crush on "Mr. Marker". Christopher went on to have many wonderful teachers at the center, and we've had nothing but good experiences there. Sophie started Tae Kwon Do when she was old enough and has done quite well.

Mr. Barker came back to the center last week and started teaching again last night. Sophie has moved up to the children's class, so both of my kids were in Mr. Barker's session. He is so fantastic with the kids, so encouraging and supportive. I heard him say (the door to the dojang was open), several times, "Good job, Christopher! I like how you did that!" He worked solo with Sophie, as she was the youngest child there and it was her first children's class. She loved it.

I'm so glad that Mr. Barker is back. But most of all, I'm so glad that he was the first of many people, outside our family, who appreciates Christopher just as much as we do.

And boy, has Christopher come a long way. As I was telling Christopher's other instructor (after he said, "Christopher has been doing so well lately.") if someone had told me then that things could be this good now, I wouldn't have believed it.

The Revelation of a Splash

2006-08-07T13:58:00.000-05:00

Posted by Kristen

Bryce is extremely physically cautious and sensitive. As a toddler, he refused to walk in the grass of our front yard - lush, soft, shaded grass that should have been inviting seemed like an assault on his senses. We have a picture of an eight-month-old Bryce sitting in the grass with his hands lifted up unnaturally and a frustrated squint in his eye because he couldn't put them down for fear of his skin actually touching the blades of grass surrounding him. At age three, we had to start cutting every single tag off of his clothing. We tried to sneak some past him a few times, but he could always tell the second the shirt touched his skin, and he was hysterical until we remedied the situation. When his peers were happily doing somersaults, climbing on playground structures, and riding tricycles, he was agonizing over the position of his body in space, what each new activity would ultimately feel like, and more importantly how much control he'd have over his body in the process.

Last summer, we enrolled Bryce in swimming lessons. After four weeks, although he did make some progress in terms of how nervous he seemed about kicking and blowing bubbles while putting his face in the water, he still refused to put his entire head in. We weren't overly worried about it, because we've learned with Bryce that he will make leaps only when he's ready; any negative focus or additional pressure from us only creates more of an issue. It was still a concern in the back of my mind, though - when would he make the leap, and how difficult would it be?

This summer, we joined our neighborhood pool. To our shock and amazement, Bryce has decided to make his leap in this area now: within six visits to the pool, he has gone from nervously clutching the side and blowing the occasional bubbles on the surface to jumping off of the diving board, putting his head under, swimming small distances, playing with other kids in the pool, and actually asking to be "thrown" from a standing position on our legs in the water so the force will allow him to go just under the surface and "swim" back up (all of this while wearing a life jacket, which certainly makes all of these tasks physically easier, I'm sure). John took him to the pool last week and came home telling me that Bryce was bravely jumping from the diving board, but I was picturing him stepping gingerly off after debating over it and holding up the diving board line; when I saw it for myself, I was shocked. He is not a kid I would have expected EVER to run and jump - lunge - off of a diving board. It's truly amazing. Every time I watch him jump off and swim to the side to get out and start over again, I have a huge smile across my face and an expression of disbelief in my eyes; I look back and forth from Bryce to John, and we exchange looks that say, "can you believe what we're seeing?!" I think the other parents and the lifeguards on duty are wondering why it's such a big deal to see a happy kid jumping off of the diving board, but I no longer feel the need to explain or justify.

One day last week when John was there with the kids, another child about a year younger than Bryce was talking to them and explaining the intricacies of "adult swim." Yesterday we met his mother, and John told her how articulate her son was, and how much he'd entertained us several times before with his speech, movements, and vocabulary. She had a look in her eye that I recognized, a complex mix of pride, concern, fatigue, and guardedness when she said, "yes, he's very different!" about her son. She said it several times through the course of our conversation, and I wanted to say, His quirks? The intensity other people don't see? Those things he does that worry you and make you question his place in the world and his ability to inhabit society comfortably? They're part of his own path, and one day you'll look up and realize that the path may be more difficult, but he's walking it on his own knowing he has you as a guide, and that is priceless to him. I wanted to tell her not to feel like she had to apologize with her voice and her eyes when she spoke about him to me, because I knew exactly how it felt to be in that position, and that some day soon her son was going to do something that would shock her not because of its difference or uniqueness or the way it stuck out from normalcy, but precisely because of how very wonderfully normal it was, and he would show her that his path is what works for him. But, instead, I stuck with a short, friendly statement and a knowing look and said, "we have one like that too." I know it's something she's going to have to realize on her own, like I just did.

Intensity

2006-07-25T06:23:00.000-05:00

This post was written months ago for my other blog, It's Not All Mary Poppins. I never did publish it there, because I just didn't know how the nice mommies and daddies, with their pretty standard-issue kids, would respond to this tale. It's intense. It's not the sort of thing a lot of parents ever have to deal with, and, without an understanding of the situation, my response could seem a bit well, intense.

Then I realized I had a potential audience here, readers who would understand, who have experienced the child who is a danger to himself and others, who know full well the necessity of physical intervention. Even those of us who don't spank our children may need to intervene physically when a child is truly out of control: how is it done without being harsh and punitive? How can we make it a constructive event, with a positive outcome for the child?

Here's the story.

Hunter’s first day. It hasn’t been so bad, all in all, but it certainly started off with a bang!!

I’m not sure if I’ve made this clear before, but almost-four-year-old Hunter has never, ever been left with anyone other than mom, dad, or grandma. Not once. Nor has he ever been away from mom for more than four hours at a stretch. Not once. Anticipating a potentially difficult drop-off, therefore, I had a lengthy phone call with his mother last week, in which drop-off protocol was carefully described. Keep it short, be upbeat, stay in the front hall. I was confident she understood my expectations and their rationale. Naively so, as it turned out.

She arrives, and makes to enter the living room. This is a precedent that I am entirely unwilling to set.

I hold my hand up. “This is where you need to stay.” Oh, oh yes, that’s right, so sorry. Only, she told Hunter she’d show him where the bathroom was before she left. Oh, for heaven’s sake. She knew she wasn’t to do that. Besides, the bathroom is at the back of the second floor, much further into the depths of the house than parents are allowed. This public/private tension is one of those issues of working from your home; my policy is that parents stay in the entryway unless expressly invited further. It’s been an unspoken policy till now, because I’ve never had anyone presume to enter further without a direct invitation.

(While she chats, Hunter is locking and unlocking the front door: click-click, click-click. Wow. Most kids can’t manage that at all.)

Hallelujah, my partner is having a shower, so I can nix that one, anyway. Then Mom is giving me whispered instructions about the M-I-L-K in the B-O-T-T-L-E. I discover that I’m expected to heat it for him! “A little warmer than lukewarm, but not too warm.” I know it is highly unlikely the boy will lay eyes on that thing today, and that if he does, he can take it as is and be grateful!

However, Mom is anxious enough as it is; I certainly don’t want to make her feel worse, and her anxiety is beginning to affect her child. He tugs on her arm to draw her in to the next room. I redirect them.

“Time to give mummy a hug and a kiss before she leaves, Hunter. A biiig hug, and a nice quick kiss, and then mummy has to get going.” Cheerful, firm, directive, for both of them.

He hugs her, but it quickly becomes a cling. “Momma! Momma, stay!”

Her eyes well up with tears. However, give her credit, she’s now trying to get with the program. “Momma has to go now, Hunter. You’ll have a great day, I know you will.” He objects, and she launches an explanation that I can see will quickly devolve into an extended momma-coax-and-toddler-rage session.

I intervene again, speaking calmly as I wrench his clutching fingers from her sweater. “It’s okay, Hunter. Momma has to leave now. She’ll be back later.” I lift him off, and turn him away from mom. Meet her eyes, give her a warm smile, and offer reassurance over the din her son is now making. “It’s all right. He’ll be fine. We’ll be fine. I’ll see you this afternoon.” Then I walk with him into the living room. She leaves.

Picture the scene. I have two three-year-olds and an almost two staring with wide eyes at the screaming, flailing three-year-old I have on my hip - facing out, so as to avoid blows to my head. Mom could be, for all I know, hovering on the porch, listening. Certainly she’d be able to hear him, even through the closed door.

Now, I am quite aware that in my last tantrum installment, I suggested placing a raging child in a safe spot and walking away. I am very quickly evaluating my options, and balancing the interests of the varying parties to this drama. I decide not to isolate him, at least not as my first response, for a number of reasons. The three most significant are:

I am not sure that my usual quiet spot will be safe for him. He had already surprised me with the ease with which he locked and unlocked the front door. Not that I ever lock the children into the quiet spot, of course, but it indicates a level of sophistication the others haven’t yet reached. I’m quite sure he could and would scale a playpen, open a door, maybe even climb a baby gate. I need to come up with a Hunter-safe quiet spot before next week!;

Corollary to the above: Hunter doesn’t know me well enough to understand the futility of breaking out of quiet time. Dealing direct is the quickest way of establishing that what I say is what happens

Hunter doesn’t know me, hasn’t yet developed any trust in me. Unlike a familiar child, this poor boy doesn’t know I’ll be back;

The other children need to see that this loud and potentially scarey child can be controlled - that he’s not so scarey after all.

More traumatic to the others than seeing this child throw a fit would be if I were to lose my temper, which I am not in any way tempted to do. (Yet. Depends on how long he keeps it up, likely, but if I found my temper slipping, I would isolate him. So far, I’m perfectly calm. This is way too interesting!) If the other children were being frightened or distressed, I would remove him to another room.

So. I kneel on the floor, stand him facing me. I pin his feet between my thighs. I hold his hands at the wrists, firmly down at his waist level. He can’t go much of anywhere right now. I attempt to make eye contact; I speak in a firm, calm, compelling voice.

“Hunter. There is no screaming in this house.”

“Momma! Want go Momma!”

“Hunter. There is no screaming in this house.”

“Let go, let go!”

“You are screaming. There is no screaming in this house.”

He repeats himself, in a somewhat reduced volume. “Let go!” Now that he’s not screaming, I can respond to the content.

“Be still. When you are still I will let go.” And then I wait. He struggles once more, and I repeat myself. “When you are still I will let go.” He calms. I let go. Victory for my side? Not quite yet. He races for the front door, screaming again. Throws himself against it in a manner almost certain to hurt, if not actually injure, himself. Bangs his head into it, quite deliberately, once, and is rearing back for a second blow when I reach him.

I scoop him again. “No hurting. No hurting yourself.” Bring him back, flailing and screaming once more, to the living room. Darcy is watching with some interest. George and Mia have moved to the next room and are playing with dolls. This time I sit down on the floor, and plop him on the floor between my legs, his back against my torso. Grab each of his hands so his arms are crossed, and pull them firmly toward me. He is restrained by his own arms, unable to hurt himself or anyone else. I speak calmly into his ear.

“Stop screaming. There is no screaming in this house.”

He subsides. “I want to look out the window in that door.”

“Thank you for talking nicely.” Now that he’s physically still, I release him. He leans against me, beginning to relax. “You may look out the window in this room. You may not look out the door.” I know that his interest in looking out the screen door is merely a cover for his intention to make a bolt if I let him anywhere near it. And I know the lock won’t slow him down!

“Want door.”

“No. Window.”

“All right.”

I stroke his shoulders reassuringly, give them a friendly squeeze. He gets up, walks to the window. Post-sob shudders shake him, but he is calm.

Ostensibly ignoring him, I speak to the others. Cheerful. “Well, guys, what do you think we should do next? I know! How about we get out the blocks and the train set?”

Great enthusiasm. The others are relieved to have their world return to normal, and happy at the thought of the trains, a favourite toy newly rotated out of storage and thus fresh with novelty. Off we trundle to the kitchen where blocks and trains are kept. I very casually herd Hunter along with the rest, and let positive peer pressure carry the day. In another moment, all four children are constructing a long, looping train track in the kitchen, at the very rear of the house and far from the anxiety-inducing front door.

Total time elapsed? Three minutes, forty-seven seconds. Not bad, not bad at all. I give mom a call on her cell phone, just to let her know he’d settled in - and, without saying it, to let her see how quickly it was accomplished.

Day one. Will next Monday be just as dramatic?

postscript: The next week was not as dramatic. There was anxiety, to be sure, but nothing like the first week. I believe he was reassured to know that he was in the care of an adult who could help him contain and control his emotions when they rage out of control, an adult who wasn't afraid.

Community: A Critical Element

2006-07-20T15:35:00.000-05:00

I’ve recently come to the sad realization that there is no one in “real life” who I am close to that understands or fully empathizes with where we are on a daily basis with our “quirky” kid. Even my family, who I love, simply doesn’t always “get it” (despite their best intentions). They are quick to offer advice, occasionally even making suggestions that they know run contrary to who I am and how I feel about certain aspects of dealing with kids in general, let alone kids like Bryce.

Most “advice” in these cases (and here I am strictly talking about the ever-popular unasked-for advice, not the advice that comes after I’ve uttered the phrase, “what do you think I should do?” or something similar) comes with an implication that I haven’t thought through my actions, that my child has been allowed to “run wild” and that in some topsy-turvy way, I have “asked for this” and even deserve whatever heartache I may feel over it. “He needs to know there are definite consequences for his behaviors” they’ll say to me. Oh, really? Thanks for the tip. I guess all those times I said, “Bryce, X is the expectation, and Y is the consequence, do you understand?” and subsequently followed through with Y when X was crumpled in Bryce’s hands and thrown down the stairs in rebellious glee – that all means nothing. Because…why, I’d like to know? I didn’t say it in the right tone of voice? I didn’t follow Y up with a paddle to the butt? What exactly was “wrong” with my delivery? Oh, right. Nothing. It’s just that – and this is what they don’t understand – the kid doesn’t respond in any “normal” or “predictable” way, because HE himself is neither normal nor predictable. And when parents of “kids like these” use parenting methods intended for a range of normal and predictable behavioral responses, they get something in return that wasn’t covered in any of the books they used to study up on the “right way” to discipline this kid. They stand, like me, at the bottom of the stairs with a crumpled up X in one hand, and a useless stump of a Y in the other, while the kid on the landing, the one who, quirky or not, wants limits and guidelines like every other kid on the planet, but simply does not know how to respond to them appropriately, stands there looking at them with an expression more complex than a sentence (or an entire book) could describe, an expression that at once seeks power and approval, control and submission, complete freedom and consistent limitation. All in opposition to each other, yet all present: contrasting needs that must be resolved by the bewildered parent, me.

I have friends who don't blog who have asked me, "How do you find the time to do that? You work full time, and you always talk about how insanely busy everything is - why add this pressure?" One of the reasons I continue to make time for this is the same reason I was thrilled to hear that Candace, Susan, and Mary were starting In the Trenches last year: the connections I’ve made with people who can relate to my experiences with Bryce. “In real life,” I get well-intentioned but ill-conceived advice and implication that ends up making me question my entire role as parent. Here, I find community and commonality that tells me I’m not alone, my efforts aren’t worthless, and there are people who understand despite what I thought (in my early parenting days) was evidence to the contrary. The sanity and relief that results from that knowledge is worth whatever extra time I have to make for it.

Add your voice

2006-07-07T10:52:00.000-05:00

I recieved an email today from someone involved in this project and she asked me if I'd be willing to post this on the site, as a call for submissions. Get to it, people!

Are you the mother of a child with an emotional, behavioral or developmental disorder such as ADD, Asperger’s Syndrome, Autism, Bi-Polar Disorder, Non-Verbal Learning Disability or PDD?

We are currently soliciting essays for an upcoming anthology Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. (Wyatt-MacKenzie, May 2007).

Below is an idea of what we are looking for, but please don’t feel limited to these topics…

- Heartfelt, emotional essays from mothers dealing with their child (or a relative) with special needs. Tell us about your emotional journey. When did you suspect that your child was different from other children? Was there one defining moment or a general feeling? How did the news impact you? Your spouse? Your other children? Your parents? How is your child unique? Have you learned to see beyond the label? How? How does your child relate to others? What are his greatest difficulties? What are his greatest strengths? What has he taught you that you might not have learned? How has having a child with special needs impacted your relationships with your friends? Are you nervous about the future? What does the future hold? Is your child aware of his differences? How do you explain them to him and others? What are you scared of? What are you happy about? What are you angry about?

We are NOT looking for advice and tips, but rather essays on your emotional journey. We do not need happy endings and neatly tied-up stories, we are more interested in raw emotions and truthfulness. Essays can be funny, sad, angry, or whatever you are feeling. They can be in any format or voice.

If your essay is chosen, you will receive a byline and short bio in the book. You will also receive 5 copies of the book. Contributors will be provided with the tools to market the anthology at book signings, radio interviews, and other publicity in her hometown.

Please send your essays to aschusteff@aol.com. Please paste the submission into the email, do not send an attachment. Please include your name, address, phone, e-mail, name and age of your child, and any publishing experience. THE DEADLINE FOR SUBMISSIONS IS SEPTEMBER 1, 2006. We look forward to reading your submissions. All those accepted will be sent a release form and marketing plan.

I'm taking the mood swing OFF the playset.

2006-07-05T11:49:00.000-05:00

Mood swings. Temper tantrums. Black rages. Whatever you call it, when quirky kids lose control they lose it bad. When they're angry, they're FURIOUS. When they're sad, they're heartbroken. And, yes, when they're happy, they're ecstatic. There is never a dull moment when you live with/care for a quirky child. What you can do, however, is keep the really bad moments from happening, or at least keep them short.

First, read this. Then come back. It's okay, I'll wait....

Alrighty then. See? Great advice on how to prevent your kiddo from going over the cliff. But what happens when it's too late and you're already scrabbling for the tree root that always magically appears in The Movies but never seems to be around when you're about to fall?

Distraction and redirection. These two, in combination or used alone, are a parent's best first line of defense. If the swing/tantrum/rage hasn't escalated too much this almost always works. Remain calm and try to engage your child in some other activity. Read a book, go for a walk, run around in circles. Find the thing that gets your child thinking about something other than why he's so freaking mad. But be prepared to have that thing change without warning or reason. Nothing is static with a quirky kid.
Walk away. If your child is old enough to be left alone and he or she is in a safe environment, walk away before both of you are raging. Don't leave for very long; just be away from the situation for a few minutes, long enough to collect your thoughts and reign in your own feelings.
Model good behavior. When you're angry; really, really angry, don't throw things or stomp your feet or yell. Believe me, I know how hard this one is. I'm a loud, passionate person with a very quick fuse and it's difficult for me to control myself. But when I model aggression, that's what I get from my son. When I model surliness, that's what I'll get back from him. I work on this every single day.
Teach your child that it's okay to feel fill-in-the-blank, but it's not okay to take it out on the family. When you're feeling at the end of your rope and you need to take a few minutes to pull yourself together, tell your child what you're feeling and what you're going to do about it. My daughter, Sophie, is a typically developing child. She can observe me and she can extrapolate things based on how I'm behaving. She doesn't need to be told, "Mommy is feeling blah so I'm going to go up to my room for a few minutes of alone time to see if I can start feeling better." She just knows. My son needs to be told so he can start evaluating his own feelings and decide how to express himself.
Feed the beast! I've noticed that a good portion of Christopher's misbehaving and surly moods can be wiped out with a good snack. I ask if he's hungry and nine times out of ten he'll say yes. Even on those times when he says no, I'll fix him a snack and once he's eaten the sun comes out again. High protein foods are best; meat, hard cheeses, a hard boiled egg, nuts, soy products. Add in a complex carb (enriched, cooked pasta; whole-wheat bread; brown rice) and some fruit and you're good to go.
Put on some music and soothe that savage beast. I know this sounds odd, but putting on some quiet classical or instrumental music (not the 1812 Overture!) can do wonders for a child in the midst of a melt-down. Really. Trust me.

Of course, the best defense is always a good offense, so try to be proactive if at all possible. Don't plan outings at naptime, make sure your kids are fed regular snacks and meals, and above all, know your child. Try to objectively view his or her mood swings. Is there a time of day that's worse than others? Is there some activity that precipitates a melt-down? The more information you have, the more you can manipulate events to best serve you and your child. Like Kristen said, knowledge is power (but unlike her, I associate that phrase with Schoolhouse Rock!).

This isn't covered in a book.

2006-06-27T22:11:00.000-05:00

I'm a big research advocate. I don't mean research in the sense of scientific, experimental research (although I like that too), but rather the old-fashioned, book-reading type of research people used to do when they had time to learn about new things, investigate curiosities, explore questions. When I was pregnant, I read every book I could get my hands on - not just the "what to expect" types, but also books of anecdotal collections about pregnancy and babies, books positing theories for how to get that new baby to sleep through the night, books discussing the best sleep positions, the best nursing techniques, the best ways to ward off or manage post-partum depression. I was prepared. I was ready. Armed with information.

And then, my first son was born. My preparations, even those including my mental reminders that not everything would be "by-the-book" didn't serve me the way I'd expected them to. Despite my vast collection of theories and techniques that ran the gamut of accepted opinions, I was at a complete loss with my high-maintenance, "touchy," "type A," non-angel of a baby. The books said daytime sleep was a must, but MY son preferred to scream during the day (and it wasn't colic - the screaming never lasted long enough to qualify for that label). The books suggested rocking and soothing, but MY son needed to be left alone. The books said his incorrect latch would correct itself if I Just Kept Trying, but apparently I was the first person in human history for whom that proved to be untrue. The books said consistent implementation of time-outs for his toddler behaviors would all but eliminate major meltdowns, but MY son had lungs of steel, and the will to use them ad infinitum. The books said toddlers were out to establish their place in the world, but what MY son wanted was to establish control over the world (and not just his own).

As he's aged, I've come to accept -- sometimes peacefully, sometimes in desperation -- that I am on my own when it comes to determining how to be a responsible, effective parent to him. There isn't a book I've found yet that discusses what one successfully does with a kid like him, a kid who doesn't fit into any one manageable category. Every new phase feels like the start of a new investigation, a new research project with no documented, available starting point. Just when, through trial and error and near-insanity, I've discovered the secret to winning, he changes the game. He gives me a small break, enough time to catch my breath and become hopeful that I've managed to bring us out of the worst of it, and then, just when I become comfortable, anticipating a long-term peace, he makes his move.

Tonight, we went for a walk around the block. We have very clear, understood rules about walks, rules that I review at the beginning of every walk even though it's no longer really necessary. I haven't had a single problem with him respecting these safety rules...until tonight, ironically, when I felt comfortable enough not to wonder about his compliance. He sensed enough of a slack on the invisible tension rope between us, and chose to plunge us into a new challenge by looking at me, revving up, and running across the street, thus breaking the cardinal rule about walks. As alarming as this act was, I didn't feel the horror of our new phase until he intensified the situation by running away from me when I called him back, by defying my husband's request (and then demand) to hold his hand for the remainder of the walk, and finally by flipping his switch to Wild And Maniacal after we got home and started his bath to accommodate his now early bedtime (as punishment for the behavior). We remained calm (on the surface) and eventually we "won" this initial battle. Will our methods work next time? It's hard to say; I have no documentation for this, and every day, every phase, every test of his, reminds me of that exhausting fact.

Quirky Parents, Quirky Kids: Getting What We Deserve

2006-06-14T11:23:00.000-05:00

I recently wrote on my blog about an experience I had with Bryce that reminded me --again-- how much like me this child is. I wail and gnash my teeth over the interactions that seem so ridiculously detailed, and yet there is a large, screaming part of me that is well-aware that my husband probably feels exactly the same way ABOUT ME ( like when he's saying things like, "For the love of God, do we have to keep talking about why you feel so strongly about the pesto? Your four-page outline and PowerPoint presentation was adequate: I understand your point!") I often find myself in conversations with people when suddenly my inner voice takes over, telling me to stop talking, I'm overwhelming them, they're getting scared and are considering running far, far away from me and my never-ending TALKING, MY GOD THE TALKING. It's just that I have so many detailed nuances that I feel I must convey, and so I usually tell my inner voice to shut up, and then I keep talking in my talkative talksome way.

I've also mentioned multiple times here that we have not sought or received a specific "diagnosis" for Bryce's particular quirks. Until they become unmanageable through the resources I have at my disposal, I'm taking it one day at a time. I've started to wonder, though, if I'm avoiding a diagnosis because of what it may tell me about myself, because of what it may reveal to me that my parents' generation didn't have the capacity to reveal about me as I was growing up. The older Bryce gets, and the more confident I become in managing his behaviors and teaching him how to manage them, the more aware I become that what I'm teaching him applies as much to me as it does to him: "Bryce, when you disagree with someone, you can express yourself with your words, but you may not yell at them, even though you may feel very passionate."; "Bryce, not everyone interprets the rules the exact same way; you have to remember to be flexible."; "Bryce, when you're playing a game, you can't always direct everyone's activities -- you have to let everyone play the way they want to even though it might be different from what you wanted them to do." As an adult, my actions may look different from a four-year-old's, but they are motivated by the same general desire for control in a situation, and intensity of spirit that gets one into trouble if left unchecked.

People joke about ending up with a kid exactly like themselves, as if it's some sort of punishment doled out by the universe -- a kind of "you get what you deserve" mentality. But I'm starting to see this as more of a "you get what you need" situation. Having a kid so much like me has placed a huge spotlight on my own areas of struggle, has forced me to recognize them and think through appropriate ways of working with them, tempering them where necessary, and using them to my advantage where possible. I want to be a parent that provides that invaluable knowledge to my child, of course. But I think in the process of all this, he's providing me with knowledge for which I wouldn't have otherwise searched. That seems priceless; and when I look at it in that light, I wonder if I DO deserve it.

Discomfort Magnified

2006-05-31T11:54:00.000-05:00

Now that summer is officially here in our part of the country, where we identify the start of summer by a combination of outrageous heat and lack of school or day care that isn't labeled "camp," my husband, the primary weekday caregiver of my two kids, sees the days ahead of him in long, horrifying, unbroken stretches of boredom for two small creatures that should never be allowed to become bored. To combat the resulting insanity, he has been taking them on various outings, including to the YMCA for some time in the "Kid Zone" while he works out. Last night at dinner, John asked Bryce, "what was that game you were playing with the guy in the Kid Zone?" and something about the question made my heart jump into my throat and look at Bryce for his response, to search his face and voice for anything out of the ordinary. "Oh, we were just playing with his cards," he responded in his usual voice so that my heart could go back to the place in my body where it's supposed to stay.

I don't know why it hadn't occurred to me before hearing a comment that conjured up a terrifying image that Bryce is at the age and in circumstances where I need to discuss inappropriate touching with him. He is around more adults as the months go by, between summer camps, short-term classes, outings such as the one to the Y, and social events with neighbors and friends. I decided to talk to him about it after dinner, but when I tried, my brain kept shutting things down:

Me: Bryce, I want to talk to you about something. When you're at the Y, or anytime some other adult is taking care of you... now be careful how you word this, because you know how he takes every word you say literally; you don't want to freak him out or make him DIStrust adults...

Bryce: I'm not supposed to talk to them.

Me: No, that's not it. If Dad or I have introduced you to someone who's going to take care of you, like at the Y or at school, they're not strangers... Great, now this is really going to seem odd after re-enforcing the idea that adult caregivers are always "good"... But if anyone ever does anything to hurt you or make you uncomfortable, you need to tell--

Bryce: --the person who's taking care of me! Yeah, I do that. Today at the Y, a bigger kid pushed me into the Jupiter Jump, and I went to tell the teacher, just like you're saying.

Me: Oh boy. Yes, and you should do that. I think what I'm trying to say is that if the person taking care of you ever... uh.... hmm. ABORT! ABORT!

The problem I'm having here is that Bryce is so very articulate and communicative and sensitive and literal. I run the risk of making him paranoid, which he is prone to be anyway ("will a tornado hit our house today?"); I run the risk of him making incorrect assumptions if a teacher is changing the diaper of a two- or three-year-old and he equates that with "inappropriate touching"; I run the risk of his voicing that incorrect assumption TO THE TEACHER ("You're not supposed to touch him there! Those aren't good touches!") or worse, to another unaware adult; I run the risk of him assuming any touch at all from another adult, no matter who, is somehow wrong; and ultimately I run the risk of warping his view of physical contact even in perfectly innocent contexts.

Now, as his mother, of course I recognize that all of these risks are meaningless compared to the risk I run by NOT discussing this issue. I would rather have to explain my precocious four-year-old's accusation to a teacher or day care worker than have to explain to my son why I didn't warn him that some adults, even adults we consider to be our friends, do bad things. An unprevented child molestation would obviously warp his notions of physical touching far beyond any words of education and prevention I might say to him to keep him safe. But it occurred to me that before I dive into this discussion, a little preparation might be in order; that maybe there is a balance I can strike between saying nothing to avoid embarrassment or paranoia for him, and saying so much that he loses all trust for humanity, ever.

This conversation is one that should take place between every parent and every child, and because it's a subject none of us want to think about, it will inevitably be uncomfortable for us in some way, regardless of the child's personality. However, as with any conversation or interaction when dealing with overly sensitive and/or intense kids, the discomfort for us as parents may even be heightened (as it was for me while I pictured the number of ways Bryce might be negatively affected by MY choice of words), and so some extra prep and research time may be required. I found a few helpful links that will be coming in quite handy at our house this evening, and I urge anyone with a child over age 3 or 4 to read these articles and talk to your kids.

Defensive Parenting

2006-05-23T22:39:00.000-05:00

In my last post here, I talked about how wrapped up we were with the decision of whether or not to send Bryce ahead to the next class where his teacher claims he's perfectly capable of succeeding, or to keep him in her class where we know he won't be bored due to the individual curriculum of most aspects of the school's teaching methodology, but will be secure and with kids that aren't all a year older than him (like many are and will be in his next class). We recently had our final parent-teacher conference, and we were once again assured that Bryce was socially and intellectually ready for the challenge of the next class. Staying back a year wouldn't necessarily hurt him; he just doesn't necessarily need it.

Having always identified Bryce as "high-maintenance" and "needy", this is a strange situation for us to be in, which is why I think this topic has been so important to us. We wanted to make sure we weren't overlooking something, since we have become experts at Defensive Parenting - scrambling to head off problems as soon as we see the tiniest glimmer of an indication that they may exist. After mulling over all of the possibilities, what stuck out to me as the most obvious answer was that, despite the fact that it wouldn't necessarily "hurt" Bryce to stay in his current class another year, what it might do is teach him some things that I don't want him to learn anytime soon -- to skate by on minimum achievements because that's all that's expected of you, to take the easier path just because it's there even though you're perfectly capable of rising to a new challenge, to distrust your abilities because your parents aren't quite sure you can handle the tough stuff.

As Mary P. and others pointed out in the comments of the last post about this, Bryce's teacher is one in whom we put A LOT of trust. She has taught kids like this for 20 years, and has seen it all. Bryce's quirks don't phase her (OR the majority of the kids around him at his school, either). She tells us things about him and his personality that very few of our family members would even be able to articulate, so we know she is genuinely interested and involved in our kid's life. If she believes he's capable, we see no reason to hold him back. For once, he is not the extra needy one. We're going to send him on to the next class and re-evaluate the situation if the need arises at the time it arises.

Thank you Mrs. F., for eliminating our need to Defensively Parent this situation. Every kid, quirky or not, needs a teacher like you. Now, could you please move in with us for the summer? We have ice cream. I am not above bribery.

backsliding

2006-05-04T10:20:00.000-05:00

I know how it happened: we became complacent. Things were going so well with Christopher, even better than I had ever imagined things could be with him. He was getting glowing reports from school, his social life was picking up, he was excelling in Tae Kwon Do, and the homefront? Quiet. Blissfully boring and "normal". Then, BLAMMO! The tantrums started again. The stamping of feet and the wanting to break things (his desire to break things when he's mad actually frightens me) and the tears and yelling. The constant and unrelenting negotiations returned. The arguing and the digging-in-the-heels reared their ugly heads. They all came back again in full force. I think it's worse when quirky kids backslide, because we parents/caregivers/loved ones get so excited about the progress. We think, "Finally! There's that light at the end of the tunnel I keep hearing so much about! I see it!" and we forget that we may not ever see that light at the end. We may never see it.

But we hope for it, we really do. And every little step we take with our quirky kids toward that light is cherished, because it means that our kids are learning to cope, learning to help themselves.

I know we'll get back to that good place. We may need to discuss a medication change (does anyone have any thoughts about Focalin?) and we're probably going to have to revisit the therapy idea, but we'll get there.

I hope it's soon.

The School-Age Dilemma

2006-04-27T14:56:00.000-05:00

I have heard of public school districts with amazing special needs and gifted programs, and I wish ours was one of those. But since it’s not, I was so glad to have found the private school we did – one with individualized curriculum, a small student-teacher ratio, and a very welcoming attitude towards parental involvement. Nonetheless, I was nervous about how Bryce would handle his new class once he was there. After all, they are in school all day long, and even though the class is for four- and five-year-olds, it’s essentially a pretty demanding kindergarten class (not pre-K). I knew he would be overwhelmed; not only would his routine be turned upside-down by such a change, but he’d be exposed to so many new challenges (social AND academic) at once. Part of me was afraid it would cause system overload for the kid and he would just melt down.

After the first heart-wrenching week of dropping him off there for an entire day of actual school, where they were doing everything from math and science to music and writing, I thought, “maybe we should have just taken our chances and put him in the public school district’s four-year-old program – this is too hard for him! Look what he has to do!” He wasn’t used to writing, which was required every day in class; he had trouble holding the pencil correctly and forming the letters on the paper, and it took him a long time to get through even small amounts of work. He seemed exhausted and overwhelmed, and my confidence in our decision faltered. He was one of the youngest in his class because of where his birthday falls, but the teachers assured me his transition was going very normally. They also reiterated that many of the younger students stay in this particular class for two years because of the newness of the school demands and their readiness to move on to what they call their kindergarten class (but I call it first grade – they write paragraphs in there!). I decided to give the transition a little more time, knowing that the worst case scenario would be one more year in the class so he could “catch up.”

A few weeks ago, Bryce’s teacher approached me after I’d e-mailed her asking about Bryce’s progress in a certain area. “Bryce is doing fine,” she said. “He doesn’t need to stay in this class next year. He is completely ready for the next class. I love having him with ME – he’s so funny! - and for selfish reasons I would want him to stay, but, truthfully…he doesn’t need to.”

WOW! I thought, beaming with pride at my quirky kid adapting so well to such a demanding and challenging environment, Phew! He gets to move on to the next class! My husband and I talked about it after Bryce was in bed that night, collectively relishing the news, feeling so proud of Bryce’s accomplishments (and his progress this year has truly been incredible). And then it started to hit us: did we actually WANT him to move on the next class? He’s still one of the youngest in his class; will that set him up for social challenges and academic challenges three to four years down the line? Won’t it be harder to hold him back as he gets older if it’s determined to be necessary? But if we hold him back this year as a precautionary measure, even with the individualized curriculum, will it be boring for him, and is it unfair to remove him from his current classmates when all indications are that he is ready to move on?

We waited all year for the seal of approval on Bryce’s progress and success at school. We finally got it, and it’s not giving us the obvious answers we had hoped for. We are running out of time to decide what to do. Like with all of the decisions we make about this child, I recognize that nothing is ground in stone and we can always re-evaluate as we go, but sometimes I just wish things were more black and white.

Trusting My Instincts

2006-04-08T14:18:00.000-05:00

Sometimes when I'm dealing with Bryce (like right now, when he should be napping, but is instead asking me questions every two minutes - actually, the same question in different ways every two minutes: "Are we going to go somewhere fun even though I didn't take a nap? Mom, can we still go to a fun place today? I know I'm not napping like you told me to, but when Quinn wakes up will we still be able to do something fun? Mom? Why aren't you answering me, huh? Huh? HUH?"), and I feel that frustration building up to the point of sheer inability to see him as a child and only as a bottomless pit of demands, I find myself wondering, "why is he like this?!"

I always feel guilty when I begin to write about interactions with Bryce and how exhausting and maddening they can be for me, because the bottom line is, I could never, EVER accurately convey how constant these interactions are, and so I end up sounding like I'm complaining over merely a few bad points in our day. But when I say that it's non-stop from the time Bryce wakes up until the time he fights off sleep at night, that is actually not an exaggeration. It never ends. I've considered recording an entire day, or even just an hour, with him so that I could somehow prove to people that it's not just me being picky or "high-maintenance" (a term I frequently use to describe him). For a while, because I unfortunately do not have a sizeable group of local friends with kids his age, or with kids "like him," I began to suspect that maybe it was just me. Maybe other kids were this intense, this anal, this intent on control, and I was the one being difficult in expecting anything different out of my interactions with him.

The one who made me doubt myself the most was my sister-in-law. She's the quintessential happy-go-lucky, laid back parent. She gives me strange looks and spouts opinionated diatribes when I tell her that Bryce and I can't join her for a spontaneous evening trip to the movies because Bryce goes to bed earlier than her kids, or that mid-afternoon activities don't always work for us because I still attempt to have Bryce nap on the weekends - he needs the rest because of his proclivity to being over-stimulated more easily than most kids his age. When he was a baby, I blew off her opinions and didn't let it bother me. As he's aged, I've started to question my own instincts with my child as a result of her constant comments. The strange thing is that when I've gone along with her in an attempt to "let go" of some of the control over Bryce's schedule, or take some risks and let Bryce prove his ability to handle something new, I've ended up regretting it. EVERY TIME.

In my strongest moments, what convinces me that Bryce does indeed have unique needs, that he is not "typical" or "normal," and finally, that I am not being "high maintenance" as a parent or that I somehow create his intensity rather than react to it, has been parenting my second son. While I deal with the expected negative behaviors that accompany certain developmental stages, I don't have the same constantly intense dealings with him. I can explain a consequence for unacceptable behavior once and not enter into hours of negotiation or a endure a nuclear meltdown of a tantrum if I don't. I can change the plans and explain why without getting drawn into a conversation wherein I justify my every move for the rest of the day. I can take him to a new place and not worry about whether or not his social interactions with other kids his age will leave him with some painful memory that we'll need to talk through later. I can simply BE with him in the room, each of us engaged in a separate activity, without having to answer a question or role-play or find a way sneak away even for the simplest tasks, like going to the bathroom. In my strongest moments, I recognize these things, and I tell myself I'm doing the best for Bryce, the best for us, by managing him the best way I've determined is available to us right now.

In my weak moments, though, I am drawn into my sister-in-law's logic, that I've imagined Bryce's nature to be different than what it really is; that I've created a demanding, intense child because of my crazy, over-active imagination; that Bryce just needs to "buck up" and "deal with it"; and that the solution to all of this is so. very. simple. I really wish she were right about this. But despite my weak moments, the moments when she convinces me to let her take Bryce to her house for the afternoon where he is inundated with lots of kids, little supervision, and "priveleges" he wouldn't get at home, she is wrong. Bryce is my son. I know him. And the moments of weakness are always followed at the end of the day by moments of horrible regret for not trusting myself, moments where Bryce is losing control and has had way too much thrown at him, something that wouldn't have happened if I HAD trusted myself.

I don't know why Bryce is the way he is, but I do know that I'm not imagining it. At least right now I know that. Next time my sister-in-law calls, we'll see if I remember.

-------------------------------------------------------
I normally blog at Home on the Fringe. Thanks to Susan, Candace, and Mary for inviting my regular contributions here! E-mail inthetrenches3 at yahoo dot com, or fridayplaydate at cox dot net if you are interested in contributing a guest post to In the Trenches.

Quirkiness has its advantages after all.

2006-03-28T08:15:00.000-05:00

The following is an original post by Kristen of Home on the Fringe. You can find Kristen's previous In The Trenches post here.

I joke a lot on my blog that my family is full of freaks and misfits, and I illustrate this most of the time with antics about my kids. It's not just my young kids, though; the misfit factor starts at the top, with me and my husband, who are 17 years apart. He brings two older children to our family, which makes us a "blended family" – another Freak Factor for us in a society that tends to pretend blended families are just like all nuclear families, that to say otherwise would be insulting (it wouldn't be; blended families are different, they do have different needs and different issues). Add to that the sad fact that these two stepkids of mine have a whole host of emotional and psychological issues that have only recently been acknowledged professionally and "officially" despite our efforts FOR YEARS to get family members, doctors, and counselors to take our word for it that something was not right (how could it be right when these kids were abandoned by their biological mother, who was emotionally absent even before she physically left them?). Our dog is epileptic, and despite the Phenobarbital he takes to eliminate his seizures (and which should leave him lethargic), he is the 70-pound canine combination of the Tasmanian Devil and the Hyper Hypo. So, yes: issues all around.

Then our two younger kids are thrown into this high-maintenance mix. Nineteen months apart, they are close enough in age to require basically the same amount of attention and focus from parents or any present authority figures, but far enough apart in terms of development and personality that they each require a much different type of attention. Bryce is 4 ½, almost frighteningly bright, and very, very intense. He is demanding and exhausting and requires constant interaction. Quinn is laid back and happy, but at age three, is impressionable and near-obsessed with honing his copycat skills. His subject? Bryce. This means that, rather than parenting one intense gifted kid and one flexible, happy kid, we are parenting one intense gifted kid, and one expert mimicker of intensity. Quinn has learned that yelling and repeating ad infinitum is Bryce's default method of communication, and even though he sees Bryce's resulting consequences, in his quest to be like his older brother, he yells " want milk want milk want milk" at the top of his lungs, too.

The funny thing here is that because Quinn is so different by nature, he isn't really convincing. Bryce's intensity and constant struggle for control results in loudness and apparent hyperactivity, but Quinn's loudness and attempts at hyperactivity are forced, like lines in a play, and are therefore less intense, more easily mitigated, and - don't tell him this - extremely funny to witness. Quinn has no more desire to be in control than any other three-year-old, but Bryce's desire for control motivates his entire life, and it has from day one ( before day one, actually – hence my last-minute c-section after hours of pushing and the kid's refusal to come out, complete with drastically lowering heart rate that was freaking out the doctors). We have very different responses to each of their behaviors, even though on the surface, or to an innocent bystander, they would appear so very similar.

I have many concerns about Bryce's quirkiness. I worry that as he gets older, he will find himself in situations where his peers won't tolerate or appreciate his intensity, that I won't be able to teach him in time that there are certain behaviors he has to do a better job of controlling in order to get by and cultivate friendships – that before I can achieve my goal of getting this message through to him, it will be too late, his feelings will be hurt, his self-esteem will be crushed, his trust in the world will be compromised, and the part of his intensity that I love, that makes him who he is, will dissipate in self-preservation.

For Quinn, I don't have these particular concerns. I've seen Quinn in social situations; on his own, he draws people to him like a magnet. At 2 ½, he was the life of my stepdad's birthday party; when he'd leave the room to find age-appropriate toys (as opposed to the glass bowls of cashews he'd tired of dumping out on my mom's living room carpet), my stepdad's friends would start looking around: "Where's Quinn? Bring him back, I want to show him how to do the cool guy fist bump again!" In situations with kids his own age (separate from Bryce), he also thrives. At pre-school, his teachers can't say enough about how funny and engaging he is, how much he loves to be there, how much they love having him.

Already, we've taken steps to give Bryce advantages specific to his unique needs. Despite the look-alike behavior we observe in Quinn when he's at home with his brother, his needs in terms of schooling and socialization will be very different. They will be, dare I say, "normal," whatever that means anymore. Quinn is the one most closely approximating society's view of normal in our very different family. This seems to suggest, though, that "normal" is quickly becoming non-existent. Out of the four kids in this family, one of them, at age THREE, seems to have no major social challenges or quirks. It took us years to get any sort of diagnosis (depression, and possibly ADHD, inattentive type) for John's 16-year-old daughter. His son is 21 and has left our home to live his adult life – but so far that life consists of addiction (gambling, alcohol) and, my guess would be, undiagnosed depression, and the many resulting long-term negative consequences (social, financial, familial). The only official "diagnoses" we've received for Bryce have been texture aversion and possible sensory integration dysfunction, and giftedness, and those were over two years ago. So far I have avoided seeking out other diagnoses for him - probably mostly out of fear, and the hope that I can educate myself and be vigilant enough in monitoring and mitigating his behaviors such that over time he will learn to manage his quirks on his own. I don't know if this is the right answer, and I have no doubt that as the years go by, I'll have to re-evaluate and decide whether I think my approach is working for him in his absolute best interest.

And Quinn is only three years old; I realize that there are still years to find that in keeping with the trend of our quirky household, he'll uncover some special needs of his own. If that happens, I have to hope that since he comes last in a long string of special needs before him, we will have perfected our ability to identify and address them. Maybe in this family's inherent quirkiness, we've been given a gift: the ability to more clearly identify the best ways to help each individual in this "abnormal" family. This is what parents of quirky and non-quirky kids alike wish for, isn't it? The knowledge of how best to parent our specific kids, to most effectively address their specific needs? If there is a way to put a positive spin on the difficulties of life with challenging kids, challenging dogs, challenging family situations, and the frustrating unknowns of parenting, it would be this: After all we've been through and have yet to go through in our high-maintenance household, I'm going to be a lot more likely to know how to send my kids into the world having been given exactly what they need in life. And that's what every parent ultimately wants for their kids, quirky or not.

Interested in contributing to In The Trenches? Contact us at inthetrenches3 at yahoo dot com, or fridayplaydate at cox dot net.

not goodbye, just au revoir

2006-03-24T16:51:00.000-05:00

It's funny that Candace should have this to say just now.

Because I've been thinking the same thing.

Well, not exactly the same thing, but something similar. Recently, my day-to-day life has been hard to get through; writing about it has been more than I can manage. Nothing bad is going on at my house--in fact, we've been meeting with an array of specialists and therapists and whatnot, setting up appointments and arranging babysitters and . . . well, we're making progress, but it's taking a lot of time. And a lot of energy. And it's not just my quirky kid--I have another child, too, who needs my time and attention. Oh, and then there's my husband. And . . . you get the picture.

I am also going to take a hiatus from In the Trenches. Which leaves Mary P on her own. Which is where YOU come in.

When Candace introduced this site, she wrote about how it would be "a place where parents of challenging children can come to commiserate and get ideas . . . a place where people who have challenging children in their lives (aunts, uncles, daycare providers, teachers, etc.) can come to share stories, to learn things, and yes, to vent, because those of us who love challenging children need to vent, without judgment." We all continue to believe in this project, even as we are making the decision to step back and take some time away.

But we want to see this site contine, and we need your help. Are YOU interested in writing for In the Trenches? If so, contact us, either at inthetrenches3 at yahoo dot com or at fridayplaydate at cox dot net. We are not closing this site down, but we are undergoing changes.

And we thank you for your participation and support.

Highs and lows

2006-03-23T15:16:00.000-05:00

Things have been quiet here at In The Trenches. I can't speak for my esteemed colleagues, but my life certainly hasn't been as quiet as this here blog.

However, while I'm usually dealing with some aspect or another of Christopher's quirks, it seems lately that I'm dealing more and more with "regular" stuff. The doctors all said that as he got older Christopher would start maturing and he would start maybe managing himself. I didn't believe it, of course. I would nod in understanding, knowing full well that where we were at age five would be where we were at age nine.

I was wrong, and for once, I'm glad I was.

Each quirky kid is different, yes. Not everyone is going to experience this, I know. I debated with myself over whether or not to write this post, knowing that there are people out there who will probably never get to the point we're at right now. I'm sorry for that. I wish every parent of a quirky kid could feel "normal" for a while. It's a nice feeling.

I'm going to be taking some time away from the Internets for a while. I hope Susan and Mary P. will forgive this sudden announcement, and I hope they'll post some of the drafts they have going right now. They look good and they should be out there for all to read. Susan currently has another site up and running and it looks quite good. Go visit if you have a moment.

In any case, I wish you all peace and quiet moments and run-of-the-mill days.

hoop dream

2006-03-06T19:57:00.000-05:00

I don't know how many of you are basketball fans; in my family, college hoops is nearly a religion. My brother has said repeatedly that his favorite weekend of the year is the first weekend of March Madness--48 basketball games in four days. John has taken days off work to watch the tournament; he has traveled cross-country to see games; he has worn his University of Arizona flag to work as a cape to celebrate his alma mater's appearance in the Final Four. I am from a clan of hard-core basketball people.

I had always hoped that my sons would play basketball, like my brother did. They are little now, and it is hard to know what they will love, but we are beginning to see that Henry's disability may very well pull him toward other interests, not basketball. Quite honestly, one of the most difficult aspects of Henry's diagnosis has been letting go of our ideas about who we hoped he would be and learning to foster who he is. Every parent has to do this, at some point, but for the parents of quirky kids, the road to acceptance can be particularly rocky, as it often involves abandoning many of our most dearly held dreams of what our children might accomplish. I am certain that Henry will do whatever he sets his mind to, and that he will find the things he is passionate about, but because of the way his mind works, he may very well not choose the things that I love the most. Like basketball, for example.

My husband and I are not the only ones who have had to rethink our dreams for Henry; my parents and my husband's parents are, at some level, going through the same grieving process. So when my father heard about Jason McElwain he immediately e-mailed me. And he warned me, as I will warn you--the video will make you cry.

Not a basketball fan? Don't worry--that's not really the point of the story. Jason McElwain is a high school senior in Rochester, New York. He is the basketball team manager. He is also autistic. And, in a game last week, Jason scored 20 points in three minutes, a remarkable feat for any high school basketball player.

People with autism lack social skills; they lack the kind of empathy that is often necessary to play as part of a team. But they also lack any sense of peer pressure or need for external validation. For Jason McElwain, his disability proved the road to his success. He was immune to the 'big game' pressure; he just went out and shot the ball. And scored 20 points, most off of three-point shots. This story is amazing to me for so many reasons, not least of which is the coach's decision to let Jason play in a crucial game. To me, that is the best kind of sportsmanship, and is what high school sports in particular should be about, and it is what I hope my sons--both of them--will get from their own sports experiences.

Now go watch the video. And get a tissue--you are going to need it.

Good News for Teeny Preemie Survivors

2006-02-28T12:34:00.000-05:00

Have you ever seen a truly teeny preemie? For a while in the 1980's, I volunteered in a Children's Hospital. Occasionally I would go take a peek at the teeny preemies. These tiny people, their wee red selves outweighed by the masses of tubes and wires protruding from their incredibly delicate bodies caught my heart each and every time. Their little hats, their hands and feet the size of the end of my thumb, their chests rising and falling with such effort. This entire little person could fit in the palm of your hand.

And even when they thrived enough to be removed from their incubator, to be removed from their tubes and wires, to be fed by mouth, even to nurse, and finally, to go home... Well, we all know their longterm prognosis isn't as good as full term babies. There are the health concerns, the increased likelihood of learning disabilities, their overall fragility.

Or are there? A recent study, one of the first longitudinal studies on this population, was published on February 8, 2006, in the Journal of the American Medical Association. Its findings are heartening.

This study followed 149 extremely-low birth-weight babies, who averaged 841 grams (1 pound, 13.5 ounces) at birth for 25 years. A control group of 133 full term, normal birthweight babies was also followed. Twenty-five years later, what have they discovered?

Well, it's still true that very teeny preemies have more challenges than full-term babies. The first critical weeks are treacherous: a little over half don't survive this period. That's a harsh and undeniable fact.

However, once a child has weathered that first critical period? According to The Globe and Mail, "the new study shows that the majority of superpreemies 'made a successful transition to adulthood' - meaning their education, employment, marriage and parenthood levels were smiliar to those of normal birth-weight babies."

They graduate high school, pursue post-secondary education, live independently, marry, and have children at comparable rates to "normal" children.

So, once you've brought your little one home, odds are good that s/he will be just another "normal" child. Which is good news.

"Good" teachers vs. "bad" teachers

2006-02-17T02:06:00.000-05:00

My son's teacher called me last night and asked if she was interrupting bedtime. She was calling to ask how Christopher was doing; the day before yesterday was a rough day for him. There's a lot of background story that I'm not going to get into (too long, too involved), but at one point she (Mrs. G.) was a bit short with him and he quietly dissolved into tears in one corner of the classroom. It's been a while since he had a reaction like that. He adores Mrs. G. and like I said, there's quite a bit of back-story. She and my husband (who had dropped off a project at school) talked about the tears (Christopher had to go to a pull-out class just after so Mrs. G. didn't get a chance to talk to him) and she asked him if he would be able to check in on him later in the day. He couldn't, but I could, so I showed up when I knew Mrs. G. would be available for a discussion. We had a long talk about what's been going on and how we can best address it.

And last night, she called to say that he seemed to have a good day yesterday and she asked how he was. She is a good teacher. Not only is she concerned with my son's academic progress, she's concerned about his emotional growth. She "gets" him, and I love her for it. She sees past his behavioral hiccups and values him for his mind and his heart.

Christopher's first grade teacher didn't "get" him. Her non-acceptance of him and of the diagnoses we had at the time made the school year quite difficult to live through. At the time, he was oblivious, but as he grows older he's been making comments like, "Mrs. D. didn't really like me, did she?" I suppose he could be making that connection because every single time another parent asks me about previous teachers I sort of see red and I kind of go into a free-for-all of bashing the woman. But really, it was so bad that one time I went to the Principal (yes, more than once, and luckily he was wonderful about everything) and said, "I'm considering switching classes and that would be disastrous for Christopher but we can't continue like this. Do something." And he did. I did, too. I started dropping in, unannounced, to visit the classroom. I think it kept her on her toes. I also made it clear that I would be willing to come and sit in the classroom every single day if I had to, to make sure he was being treated with dignity and respect.

The 'team' at school made a mistake when they placed him with that teacher. The school psychologist apologized to me for it, and while I was grateful, I wondered aloud what I could have done or could do in the future to make sure he was placed correctly. She told me to continue being vocal and demanding about Christopher's needs, and to make myself visible in the classroom. For the past two school years, I haven't had to be demanding. The teachers he has had have been wonderful. But each year I become anxious and I worry that we'll get another bad teacher. I know, however, that I have the tools to minimize the risk of that happening.

If your child has an IEP or a 504 plan, you can be quite involved in the teacher selection process. For example, our school doesn't allow me to directly request a teacher, but I can get loads of input from other parents (especially those parents who have kids with similar dispositions as Christopher) and from our current teacher. I can find out which teachers in the next grade are known for their organizational skills (Christopher needs structure like I need chocolate), which teachers are more accepting of multiple disorders (and especially of Christopher's Dysfunction in Sensory Integration, because some people don't even consider it to be a "real" disorder), and which teachers can keep up with his racing little mind. I can also find out which teachers will be unable to tolerate his squirminess, which teachers don't appreciate being corrected (because he does that a lot; this year's teacher thinks it's really amusing and doesn't mind in the least), and which teachers simply don't like dealing with kids who look "normal" but don't act that way.

Our district also allows parents (all parents, not just parents of special needs children) to fill out a "what kind of learner is my child"-type form to help the staff place kids in the classroom that will be the best fit for everyone involved. When the third grade placements started, Christopher's second grade teacher told me she knew who she wanted him to have. She advised me on what to write on the form to make sure he was placed in that classroom, and she said she would only recommend Mrs. G. (though she couldn't tell me at the time the name of the teacher) for him. At the beginning of this school year, Mrs. J. (his second grade teacher) approached me in the hallway one day and said, "He was placed in the perfect classroom. He will have another great year, I promise."

She was right.

It's a shame that we, the parents of these quirky and amazing kids, have to fight so hard for them to get the education they have a right to. We're not just fighting for their education, though, we're fighting for their little hearts. I know we're lucky. Our administrative staff is more than willing to work with us and never once have I felt that my concerns haven't been heard and appreciated (except with Mrs. D., but once I spoke with the Principal, she changed her tune). I know some of you have to put up with all kinds of crap, and for that I am angry for you. We have to keep fighting. Not just for our kids, but for the kids who will come after them.

We're blazing a trail for them and for their parents, so that the world can be wowed by these incredible children.

Through the Looking Glass

2006-02-02T14:44:00.000-05:00

Estee, mother of Adam, has commented a few times on In The Trenches. I took a quick visit to her blog, which turned into a series of lingering visits. Estee writes compellingly, with intellectual depth and maternal passion about her son and about the issues of the place of the autistic in our world. At four, Adam is a beautiful child (pop over there and see his picture: the boy is adorable) and, in the words of his mother, " affectionate, cheerful, and wants to learn". I chose this post because it is accessible for a first-time reader. However, I could have chosen any of posts at My Son's Autism. They are uniformly thoughtful, at times provocative, always intelligent and passionate.

This post was originally published on Sunday, January 15.

I watch Adam observing the dust particles spotlighted by the beam of sunlight through the window. Daddy tried to make him pee on the potty until I heard "mom, mom, mom...come!" He was happy to see me, obviously not wanting to sit to pee, but more interested in the dust particles happily dancing in front of his eyes. Yesterday, it was the reflection of water against the wall, again aided by the sun's reflection. He was swimming with grandpa in the pool of their condominium, and the water performed a dance like it was just for him.

I've heard other people with autism express how they can SEE the air moving. My Adam is intrigued when rain or snow is falling from the sky -- no small miracle in his eyes, I presume.

He is interested in putting on my sunglasses -- whoa -- the world must look interesting through those, or putting the coloured water blocks to his eyes and then to the window, to see how the outside looks all blue, yellow or red. These are quiet moments, totally entralling for Adam. His babbling stops and I want so badly to see what he sees like I am missing out on one great miracle, or secret, exclusive to his eyes, his world.

Other days I want to give him rose-coloured glasses - the kind that might make the world look like a jollier place. A mother's interest to protect her son.

Adam is busy today -- Sunday. He has O.T., P.T. meeting with his new consultant with our lead therapist and I'm meeting a possible new therapist. If I have time to write more today, it will be by the graciousness of my husband....

Adam is in a session now with his new consultant and our lead therapist, Laura. He is tired after O.T. and P.T. and barely eating because of a stomach virus that's been plaguing us on and off all week. But he always has such a happy disposition. This part of me leaves me amazed and wanting to be like that -- although his happiness must be, in part, genetic.

I feel like describing my days as cup half full or half empty ones -- perhaps I'll begin a daily barometer so you, the reader, can tell from which side of the fence I will be talking about our lives and autism. Today has been a waffling kind of day. The weekends are tougher because I have less supports around. I began thinking about freedom as standing in the Starbucks line with a bunch of other adults. Ahh...and coffee -- definitely associated with Nescafe moments.

Does Adam feel free? Is he affected by "the big black nothingness"(Donna Williams), the sense of imprisonment? Will he as he gets older? "Exposure Anxiety is a invisible cage and to those who live with it, that invisible cage is either their prison warder-monster-saboteur or their saviour, helping them to cut off, shutdown and keep the world of overload at bay." (Williams, p.83) Overall, freedom is based on perception -- entirely resting upon our daily barometers. Freedom can exist in the mind even behind bars, I've heard. How much is autism a prison within? And then there is the prison outside of autism, those that the rest of society constructs.

How much of looking at dust particles is Adam's prison, or personal world, or escape? "It's like trying to remove a parasite which has become finely intertwined with the person's own functioning; they may respond to this `help' as though it were an assault on selfhood...the self of mind which may be free, and the self of will which opposes the desires and needs of the mind..." (Williams, p.83) When I read that I can't help but think about the box, the way of looking at the world, depression, and all of that which suck like parasites on all of us.

I have to move on, paradox keeps tripping me up!

Now to MacLeans Magazine: The Next 100 Years. One Child's Journey to 2105 - How She'll Live, Love and Never Really Die. By 2055, scientists state that there "will be a cure for everything." Yikes. Consider this want ad for a mate:

Tall Blonde. Attractive SWF 29 who is educated looking for SWM 25-35 who is of good moral fibre, monogamous, yet extremely loving and playful. DNA screened for all neurogenerative and metabolic diseases including diabetes, Alzheimers, [Autism] and Parkinsons. Carrier of longevity gene.

Not only will we live forever, but the species that we are attempting to create is perfect. What does that say about my son and his future? What does that say about society's true goals for supporting and enabling the "disabled," and of acceptance of difference? I certainly never wanted to live that long, not until I had Adam. Still, I do not want to live forever as I believe it will effect the quality of my life in the sense that if we have an endless supply of something, we cease to appreciate it.

Yesterday, I laid down on my couch and watched the air move. I watched the clouds drift by on that windy day, undulating swiftly. Sadly, I was missing the transparent coloured blocks

all I'm asking is for one little kiss

2006-02-01T09:24:00.000-05:00

I grew up in a very affectionate family. My thirty-six-year-old brother will still give my dad a hug and a kiss on the cheek as a greeting; he still ends every phone conversation by saying he loves me. I am, in turn, very affectionate with my sons; there's nothing I love more than a spontaeous little boy hug. So you can imagine my sadness when Henry announced, after Thanksgiving, that kissing was icky and I could shake his hand instead.

It turns out that he had been trying to give his cousin--a little girl slightly older than he--a little too much love, and she had said, 'Henry, don't kiss me. That's icky.' I tried to explain that, yes, he really shouldn't kiss Liv--maybe he could give her a nice hug instead--but he insisted. 'She said kissing is icky. No more kissing. You can shake my hand.'

Henry has a poor understanding of social conventions (thus the unwanted kissing) and a very literal mind. He also has some sensory issues, which mostly consist of convincing himself that he doesn't like the feel or taste of something (even something he has loved in the past) and refusing to eat or wear or do that thing. He is occasionally hypersensitive to touch. So for a while, through the Christmas holidays and into the New Year, he was adamant: no hugging. No kissing. High fives were good, and the hand shaking.

But I was not giving up that easily. I tried sneaking kisses when he wasn't looking, but that always brought loud protests. I tried asking permission to kiss his cheek, just once, quickly, I promise, and he would grudgingly agree and then rub the kissed spot as though I had touched him with acid. So I kept thinking. There had to be a way to convince him that giving me a kiss, or letting me kiss him, was okay.

Charlie, my three-year-old, loves to be hugged and kissed and tickled. We play a game where I snuggle him up like a baby and tickle him until he screams with laughter, yelling 'Let me out of the Mommy Jail!' And when I put him down, he says, 'Let's do it again!'

One day I realized that the solution was to demand a kiss as the fee for release from the Mommy Jail. And only Henry could rescue Charlie. So now, when I tickle Charlie, he yells, 'Henry! Henry! Get me out of the Mommy Jail!' And Henry will run from the farthest ends of our house to kiss me and free Charlie.

And somewhere along the line, he decided that if it was okay to kiss me as the pass out of Mommy Jail, it was probably okay to kiss me goodnight and probably okay to let me kiss him--but only once or twice, and NOT in front of his school--every once in a while. And since he's a boy, I suppose that's the best I'm going to do.

With quirky kids, it's all about the strategy. And frankly, I'll take whatever love I can get.

I know you'll understand

2006-01-29T16:53:00.000-05:00

Something happened today, something that us parents of quirky kids usually only dream of.

My son won a competition!

The Pinewood Derby was today, and he won first place in his division. This wasn't a contest of physical skill. It was a contest of creativity and ingenuity and he won. Quite honestly, a lot of the other boys seemed shocked by his win. Most of them (all third graders) play sports during recess. My boy is the one walking around with a friend (sometimes alone) playing spy or being some character from a video game. I don't think some of the boys thought he had it in him to win.

But he did. He designed his car, he helped his Dad build it (power tools + highly impulsive boy = disaster; enter Dad), he painted it (with minimal help from me). He was also an incredibly gracious winner. I think that's what I'm most proud of. He shook hands, he congratulated the other boys on races well-run, and he didn't gloat.

I hope each and every one of you get to experience this feeling, this "normal-ness" that I'm basking in right now. It may not be a Pinewood Derby competition. Maybe it'll be the spelling bee, or maybe it'll be the science fair. Or maybe your kid will make eye contact with strangers, or will face a swim lesson without fear.

Whatever it is, we all deserve this feeling, at least once.

(I also posted a version of this story at my other site, suburban misfit.)

What Kind of Quirky is This?

2006-01-26T17:28:00.000-05:00

I have in my care a young man, we'll call him Sam. Sam comes after school for two hours a day. Sam is eight years old.

I like Sam. Apart from him, I care for five toddlers during the day, and two other boys after school, another 8-year-old, Jean-Francois, and his 10-year-old brother, Michel. Jean-Francois finds Sam truly annoying, and even though I enjoy Sam a lot, I understand what it is about Sam that puts the other boy off. Michel is kinder. He tells his brother, "Sam is weird, but he can't help it, and he's always nice about it."

To use my grandmother's terminology, Sam is "an odd duck".

Here are the quirky things I've noted about Sam:

- Sam likes routine.
Every day when he arrives, Sam greets me. Even if he cannot yet see me, he carols out a "Hewwo, Mary!" (Sam cannot say his "l"s yet.) I must answer. If I hesitate, he freezes where he is and calls again until I answer. It's as if he cannot continue to the next thing until this necessary is accomplished.

Then he goes upstairs to the bathroom. When he comes downstairs, he expects to see his glass of milk waiting on the table for him. If I am in the kitchen pouring it, he can wait, but if I haven't yet made it to the kitchen, he reminds me, calling from his place - always the same place - at the dining table. He's always polite, he doesn't display anxiety about these things, but it's clear he needs this ritual to take place in its proper way.

Then he eats his snack, which can take an hour. He is a slow eater. Then he begins his homework. He never needs to be prompted. He established this routine for himself, and it's 100% reliable.

- His snack is huge - his mother packs enough for three little boys - but never have I seen him offer to share any of the excess, even when the toddlers are standing by him eyeing his every mouthful. I don't think it's selfishness; I think it's simply that he doesn't read the body language, as unsubtle as it is. I could be wrong, and this could just be garden-variety selfishness, but it doesn't have that appearance to me.

Throughout his snack time he is cheerful, friendly, talkative. His mother tells me his teacher this year adores him, and I can see why. He's attentive, though in some respects oddly oblivious, he's polite, he's handsome, he's quiet, he does his school work conscientiously and meticulously.

- Conversation for Sam consists mainly of him peppering me with continual questions. One after the other, rapid-fire. He often listens to the answers, and occasionally responds to what I've said, but it still feels odd, this question-and-answer "conversation."*

- His conversational gait is odd. Its speed varies and is slowed by pauses of strange lengths in unexpected places. He also tends to hold his head at a tight angle over his shoulder while he talks, and often looks way up and to one side as he speaks to you, though he can and does make eye contact as well.

- He likes to laugh, to the point that he's often rendered mute by his laughter when something catches his funny bone. When he laughs, he cannot, cannot speak. His mouth gapes wide and he wheezes, gasping in silent gulps of laughter. Even still, he doesn't "get" humour entirely, and this worries him. It worries him that his uncontrollable laughter "makes the other kids mad". What he misses are the social aspects. Things that strike Sam as funny are not always - not often! - shared by others.

Lately, for example, it's been something another child said. Every day he will come in and say, "Remember when Arthur said 'What's eating for'?" Then he'll collapse into speechless, wheezing laughter. At first I laughed, but this has been going on for months, and it's long since ceased to be funny for me. Sam, though, clearly hopes that I will share the joke.

"Why aren't you laughing?" he asks when I only smile. I explain that something can be funny at first, and then cease to be funny after a while. That it's okay for him to still enjoy that joke, but that I'm not finding it funny any more. This worries him, and the questions begin. Why is it not funny any more? Does anyone still find it funny? Why is he the only one who finds it funny? Will it bother the other children if he laughs about it? (This last one pulls at my heart, seeing a child who's beginning to understand that he's out of synch with the other children and not wanting to annoy, but not understanding why he does.)

- For all his focus on me and his need for my attention, he's singularly unaware of me. I injured my back a while ago, and the problem had steadily worsened until I was moving very stiffly and with obvious pain, occasionally gasping when a movement hurt unexpectedly. During his hour of Q&A snack time, not once did he ask about my state. The other 8-year-old, on coming in the door after school, watched me walk towards him with wide eyes, and said, "What's wrong with you?" Took him 40 seconds to see, notice, and ask.

- He'll often ask for crayons so that he can "draw a picture". When provided with them, he writes, in his very neat and very firmly pressed handwriting, meticulous lists of the names of all the children in his class. One day before Christmas, I handed him a green crayon and asked him to draw me a Christmas tree. In less than five seconds, he very lightly sketched out a rough outline of something vaguely triangular, before setting that crayon aside and choosing a dark blue on with which to write another list of those same names.

He's not standard issue, that's clear. I don't see his quirkiness as debilitating, mind you: he does well academically, he can play with other children, albeit a bit awkwardly; he has a couple of friends. He'll never be Mr. Popular, but I've never seen that as a worthy goal anyway. He's also not a social outcast.

Just a bit quirky. So, all you quirky kid experts, have you any input for me? What might I be seeing here?

* Here's an example of the questions that came at me over a random, timed, ten-minute period:

Why did you put out the wrong snowsuit for George?
Why doesn’t Darcy wear a snowsuit?
Why does Darcy’s suit have two pieces?
Why doesn’t Arthur’s suit have pants?
Is Michel and Jean-Francois coming today?
Why does Arthur have a weird voice?
What does he talk like?
Why doesn’t he talk like me?
Do you know what he talks like?
Is Arthur the most different-est?
Are you going to get those guys down soon?
Where’s Arthur?
Where does everybody sleep?
Where does Alice used to sleep?
Who sleeps in the bedroom by the bathroom?
Zach sleeps in your bedroom?
What about Mia?
Where does Mia sleep?
Why didn’t I have a chance to say goodbye to Alice?
Are people going to write to her?
What will you say on her card?
Has Alice turned two yet?
When does Arthur’s mom come?
What does “varies a lot” mean?
When did Michel and Jean-Francois leave yesterday?
So I left at 4:40?
Does Darcy leave at 4:35 or something?
When’s Niamh come?
What about Zach’s dad?
What if it’s Zach’s mom?
What about Michel & Jean-Francois' mom?
Why doesn’t Michel get milk?
Is he allergic to milk?
And Jean-Francois is allergic to orange juice?

Ten minutes...

If your two-year-old refers to himself as a magistrate, you're in trouble.

2006-01-24T11:31:00.000-05:00

This guest post was written by Kristin, of Home On the Fringe, in October of 2005.

When I was in the hospital having Bryce, one of the labor and delivery nurses said something I'll never forget. My pregnancy had been uneventful other than the outrageous weight gain and swelling from the summer heat, but the labor really caught the doctors' and nurses' attention. For some still unidentified reason, by the time we got to the pushing stage, Bryce's heart rate went down with every push, and took too long to come back up. I don't know about you, but when a doctor is "worried" about something, I'm terrified - I mean, they do this for a living and know the ups and downs of most scenarios - if something worries THEM, it must be pretty bad. During the three hours of pushing, then waiting for his heart rate to return to normal, then pushing, then waiting, then pushing, then almost having a heart attack wondering what was going on, the nurse at my side said, "Oh, he's going to be ONE OF THOSE kids."

I shot a half curious/half offended look at her, and she said, "You know, really touchy, has to have everything a certain specified way, always in control...? Some of them just come out that way." At that time, I was in the process of being prepped for a last minute decision c-section, so I was really in no frame of mind to ask for more details. As it turns out, I wouldn't need them. Nothing she could have told me would have possibly prepared me for Bryce. Besides, what little she did say, I just brushed off. "She's just jaded, she's been doing this for too long. The cord is probably wrapped around his neck. MY kid isn't going to be a touchy, intense, control freak. Who does she think she is, anyway?"

Bryce's early infancy was fraught with challenges. He screamed at nap times, didn't want to be held or rocked, but didn't want to be left in his crib. He didn't latch properly, so the only way I could continue to nurse him was to pump after every single feeding - I spent half of my day hooked up to the pump or to him (I finally gave up right before returning to work after maternity leave, knowing it would be impossible to continue that way). We couldn't take him out in the early days because he would scream inconsolably if his routine was off by a smidgeon (and let's face it, no matter how much you love your kid, it's freakin' embarassing when you're in the middle of a mall holding a shrieking banshee with a confused, terrified look on your face...that was us). He smiled only at certain people, and it took a lot to make him laugh - he always seemed to be analyzing everyone - and he was so wide-eyed, we actually referred to him as the crazy-eyed baby. No matter what the situation, if it was new, he seemed to take in every single detail, and then get overwhelmed and start the screaming again. When it came time to introduce solids into his diet, he gagged like we were trying to poison him. It took visits to speech and occupational therapists to get him to eat plain cheerios. We spent a year beside ourselves with confusion - what is wrong with this kid?

When he started walking, he never "toddled". He went from crawling to running with no stumbles or trips - it was odd. He would constantly do comparisons - if he saw an elephant on TV, he would disappear, then show up in a few minutes with whatever toy elephant he could find, show it to us, then look back at the TV. We were stupid and didn't realize it at the time, but he was trying so hard to communicate with us: "Hey you big people, look! I know what an elephant is, see?! See!?" Our replies were always "Oh, what have you got there? A toy? Why do you keep pointing to the TV? And back at the toy in....your....hand......Oh." Every time we'd run into someone at the grocery store who thought he was cute, he tried in vain to communicate something about himself; the nice old ladies would say, "Hi, cutie. How old are you?" and instead of holding up one finger like most parents teach their kids to do, Bryce would say, "Buzwtcheer!!" which was his one-year-old version of "I like Buzz Lightyear." The old ladies would look confused, pat him on the head, and move on. He was thinking, "When I can talk, I'm going to make all of you wish I couldn't, you morons."

Right after Quinn was born, he was playing with some alphabet refrigerator magnets at my mom's house. He had always just stacked them up, put them on her fridge, taken them back off and put them in a bowl, etc. So when he triumphantly called out "W!" and held up the W, we were perplexed, but thought it was a fluke. I asked him if he could find the A, and he did. Then the B. Then X, Z, Q...he was able to identify 16 of the 26 letters that night. We didn't know how he did it, and still have to assume he'd picked it up from Sesame Street or some such programming. We certainly didn't teach it to him, because we didn't even know it was possible to do that with an 18-month-old. By the next week, after I identified the 10 letters he didn't know off the top of his head, he could point out all of them at random. I started looking in all the baby and toddler books I could find, but there was nothing about letter or number recognition. In the two- or three-year stage there would be mention of basic shapes, but nothing about this. We started thinking this was another weird aspect of Bryce's nature, along with the infancy and baby issues we'd been through with him.

By his second birthday, he was starting to freak us out. His vocabulary had exploded around the same time we made the alphabet discovery, and he was speaking in full sentences, counting, identifying upper and lower case letters, numbers, shapes (such as pentagon and oval), and colors (like white, brown, and gray). He had also re-discovered the power of the scream, a scream that could break glass for miles around. He was speaking well, but could never seem to communicate the complexity of whatever it was he was trying to say - especially if it involved feelings of frustration...and so he would scream a scream I've never heard re-created anywhere else: mouth wide open, head trembling from the force, face purple from exertion, eardrums bleeding for miles around, dogs from the surrounding tri-state area running towards him. It's amazing his head didn't explode that year. Luckily his vocabulary continued to grow exponentially, and once he could say words like "frustrated", the screaming dissipated. This was the time period where he put a construction paper crown on his head, walked up to me, and said, "Mom, I am a magistrate." His pediatrician recommended full-time school at his second year check up, but we didn't think we could afford it, so we put it out of our minds.

By his third birthday, he was memorizing movie scenes and re-creating them - complete with foreign accents, costume changes, and frighteningly accurate dance moves. He required constant interaction and would take most of John's attention during the day asking questions that ranged from, "Does that lady have dogs because she doesn't have any children?" to "Where is God?" You can't just ignore him; he's persistent the way tornadoes are windy - he has no problem repeating himself to infinity. At his third year checkup, the pediatrician again recommended more schooling, specifically a school geared towards gifted kids. This time we took her a little more seriously and found a school that is used to high-maintenance, intense, challenging, controlling, and infinitely entertaining kids like Bryce. They told us they not only expected, but appreciated kids like this. This was a huge relief to us after Bryce's part-time pre-school teachers had given us what felt suspiciously like a reprimand when they told us he didn't play with the other kids, and was constantly wanting to talk to the teachers. (Oh, what a pain! A kid who wants to TALK TO US. Tell his parents!)

Right after he turned four, he started attending this new school, and has been thrust into his first real intellectual challenges ever. I felt a little guilty putting him there at first. He's only four years old, and he's basically in a kindergarten (first grade?) class - all day, every day, writing, math, science, music, art, Spanish, etc. But John had to get some work done, people!! We had to do it! Four years of answering questions and keeping intensity at bay with chocolate milk and cartoons is more than any sane person can take. Besides, these teachers allow Bryce to talk to them, and the other kids play with him because they are just as quirky and intense as he is. And I feel a certain kinship to the other parents knowing that they probably went through a a freakish few years at home with their kid, too.

When I think about what we've gone through so far with Bryce, it's hard to believe how right that labor and delivery nurse was. Oh, and the cord wasn't wrapped around his neck after all. They have no idea what the problem was. Well, the nurse knows, I think.

Indeed. He is one of those. And we love our little magistrate.

My external soul

2006-01-18T14:30:00.000-05:00

This guest post was written by Dawn. It was originally posted on her blog, I am doing the best I can, in October of 2005.

When you have a child - of any age - it is as if a piece of your soul is living in front of you.

Yes, sometimes you want to throttle that soul and get some god damn peace and quiet, or for the love of god please pick up that wet towel from the floor -Who the hell raised you?, or if Mommy doesn't get some alone time, some very bad things are going to happen.

But, still, that piece of soul is Yours. Entirely Yours. You know every inch of skin, every fold, every roll, every toe and finger. I tell Emily all the time that she is my favorite person in the world. That anyone who grew in my body will always be my favorite person in the world. "More than Daddy?" she asks. "Yes, honey, more than Daddy.", I reply.

I say all of that to say this.

Yesterday I had to go to my daughters "team" meeting at school. I poke at the team, because it is my nature to do so. I sign in with all my educational credentials out there for them to see, and make my husband write all of his educational credentials - then write Mother and Father at the end of the credentials. It is my professional way of saying "Don't fuck with me. I know what you are talking about."

Professionally, I do know what they are talking about. I understand "phonemes and graphemes" and syntax and all of the other things that get thrown around in these discussions. Professionally, I agree with their assessments. I know that my daughter has to work REALLY REALLY hard to understand how letters make words. That these concepts aren't easy for her. That keeping her in first grade was the right decision. That her articulation is rotten and her grammar is non-existent.

So, after the academic assessment, speech assessment and before the occupational therapist's assessment, I almost started to cry. I actually had to look down - think it through and make myself suck it up. The urge to put my head down on the table and cry was so strong, it was almost irresistible. Here we sit - two ultra educated parents of an only child. Here we sit - two ultra high achievers and perfectionists. And we can't do anything. They are ripping my external soul to pieces.

Then, just as I am about to crumble, the academic assessor says "She doesn't sleep through the night? Have you talked to the pediatrician?"

Oh sweet sanity. I am able to snap back to my professional self.

"We have been talking to her pediatrician since she was 2 weeks old. Of course we have. It is just the way it is." Please, do not broach the issue of her sleeping in her bed with me. I will surely have to open a can of whoop ass on this woman if she dares to offer me any advice on getting my child to sleep through the night.

And we finish the meeting.

Being a parent hits you in odd unprotected places. Places I thought I had covered with my shell suddenly reveal themselves to be tender and open. I guess that is what love is.

The straw that broke my back

2006-01-17T12:44:00.000-05:00

I'm tired.

I'm tired of explaining Christopher. I'm tired of justifying our decision to give him medication. I'm tired of people giving me alternative explanations for his behavior, like, "He's a boy!" or "He's an Indigo child*! How lovely!" I'm tired of feeling like a failure as a parent, like we (or rather, I) did something to make him this way, or like I'm doing something wrong because I have labeled my child. I haven't labeled him. I've found a way to understand him, but I'm just sick to death of explaining the whole thing.

Most of all, I'm tired of being judged. No one** knows what this life is like. No one else lives in this house, every day. No one knows what it was like to have to hold him all day when he was a baby, and it wasn't because we were nervous parents or because we didn't want him to cry. No one knows what it was like to have a child who didn't sleep through the night, not even close, until he was two years old, and even then it wasn't reliable. No one knows what it's like to have other parents oh-so-nicely say that they're glad the kids want to play at your house because Christopher can be, well, crazy. No one knows what it's like to not like your own child.

I'm tired of being tired, even. I just want...I don't know what I want. A good cry, maybe?

*I didn't read it. I don't want to. I'm sick of it all.

**And by "no one" I certainly do not mean other parents of quirky kids. My lord, you people in the trenches with me sure as hell know what it's like.

This post was written a few days ago, on one of my really bad days. I finally did have that cry (thanks to a well-timed phone call from my husband--sometimes I think he's psychic), and you know what? I never grieved after the diagnosis. I just looked at it skeptically and then I finally accepted it, but I never broke down and had a good cry. I think it was a long time coming, and I don't think I'm done just yet. I was going to delete this post, but then I thought "Why?" It's totally representative of what so many of us go though in a day and I would be doing us all a disservice if I pretended like those feelings didn't happen.

Relationship Development Intervention

2006-01-17T12:38:00.000-05:00

Today's post brought to us by Kyra, from This Mom.

Candace knew I was going to a parent 4-day workshop in RDI and asked me to write a post when I got back.

Well, I just got back and I feel like traveling the country, delivering passionate speeches about this powerful ASD intervention program or getting myself hired as the special education director in every school system in the land or duct-taping the education secretary to a front row chair at the next possible RDI workshop.

It’s the only intervention program that makes any sense. To me. I mean it. It’s the only one that addresses the core deficits of autism. I know there are many treatments out there that have helped many kids on the spectrum. I don’t knock any of them, really, I don’t. They’ve helped treat many kids with ASD, helped them deal with dys-regulation or allergies or behavioral issues or sensory issues, or actual poisoning from mercury and other metals, or many of the co-occurring conditions that a child with ASD can have: apraxia, OCD, seizure disorders, and a host of others, which is often an essential step but they are addressing CO-occuring conditions, they are serious to be sure but they are not autism.

Okay. So what is it? RDI stands for Relationship Development Intervention, created by Dr. Gutstein and Dr. Sheely, a couple who founded The Connections Center, an Autism treatment center in Houston, Texas. They are brilliant; their work is brilliant. It is not their own invention. It is based on the work of experts in the field of neurology and child development.

They’ve studied the brain, how it works, how it develops in the child, beginning at birth. They’ve synthesized the work of others in the field of neurology and child development and created an intervention program that follows the typical social developmental path of a human, that takes kids on the spectrum, step by step, through these stages that they missed.

Dr. Gutstein says, you don’t have to put your faith in RDI, put your faith in what’s been going on for hundreds and thousands of years. He says, these kids on the spectrum don’t have unique brains, they aren’t a different species. They’re people, just like us. They missed out on the stages of developmental that most of us go through naturally. They need a second chance, a do-over. They need us to take them back to where they fell off the developmental track and help them get back on, guide them through, lay down the pathways in the brain that are essential for what they call, broadband communication that is the birthright of human beings. Most of us sailed through it with ease. These kids need a more deliberate passage.

Although there is not a consensus in the autism community of how to treat autism, there is a consensus of what autism is. There are six main deficits that people on the spectrum share, from those with classic autism to those with the more high functioning PDD-NOS or Aspergers. Here’s the list:

Emotional Referencing:
The ability to use an emotional feedback system to learn from the subjective experiences of others.

Social Coordination:
The ability to observe and continually regulate one's behavior in order to participate in spontaneous relationships involving collaboration and exchange of emotions.

Declarative Language:
Using language and non-verbal communication to express curiosity, invite others to interact, share perceptions and feelings and coordinate your actions with others.

Flexible thinking:
The ability to rapidly adapt, change strategies and alter plans based upon changing circumstances.

Relational Information Processing:
The ability to obtain meaning based upon the larger context. Solving problems that have no "right-and-wrong" solutions.

Foresight and Hindsight:
The ability to reflect on past experiences and anticipate potential future scenarios in a productive manner.

These six areas, when present, represent what Dr. Gutstein calls Dynamic Intelligence, the ability to deal with the ever changing interactions of the real world.

Dynamic Intelligence is what I want for my son because without it, his quality of life is seriously in question. I want him to be able to navigate the ever changing highly variable landscape of social interactions, to have work that he loves, to live independently, to get married and have a family if he chooses. I know he’s smart as a whip, but many smart people with Aspergers work in isolation, live in isolation, and spend a lifetime feeling ostracized or painfully aware of their own quirks and peculiarities, spend a lifetime studying the rules of social interaction in the desperate hope that they will pass or fake it long enough to get by.

Our ASD kids veered off from the typical social developmental pathway somewhere around 12-18 months. Things were getting off track before that, but generally speaking, that is when they begin a deviant path and again, generally speaking, it had something to do with going it alone in the world versus seeing the parent as guide. While the typical 18 month old demands that you help them understand the world, the ASD toddler hasn’t gotten that they can and have to borrow your perspective, that they can and have to see themselves as your apprentice, that they can and have to practice regulation, coordination and variation with you, to learn the dance of social interaction and see themselves as competent. The typical 18 month old has already gotten that variation and novelty is where it’s at, the ASD toddler is already seeking out certainty and the safety of static systems, variation is too challenging; they don’t have enough experience of themselves as being successful resolving uncertainty.

Autism isn’t a stimming disorder or a behavioral disorder or a speech disorder, it’s a neurological disorder, specifically one of UNDER connectivity in the brain. We have to remedy this under connectivity. And the brain is up for it. It learns. It changes. And not just until we’re 3 or 5 or 8; it remains teachable our whole lives. Dr. Gutstein disputes the old ‘hard boiled egg’ theory of the brain that says you get to a certain point and then DING! you’re done. He sees improvement using RDI with toddlers to teens and beyond. One couple at the workshop was there to learn about RDI for their 21 year old son.

So, we need to lay down new pathways, connect these and other pathways. We also need to look at, in other treatments for ASD, what pathways are being strengthened? By an over focus on speech acquisition outside of relationship and context, aren’t we just reinforcing rote memory? Creating a deeper and deeper grove in the very place where we already know these kids excel? That’s why they love numbers or letters, that’s why they’re operating our computers and VCRs when they can barely stand.

RDI works to strengthen the challenge areas. It does take into account our kids' strengths so each family can fine tune a home program to suit their own very unique child. RDI can feel overwhelming at first; it’s very hands on. But it’s also incredibly effective; it empowers the parent. It works.

Gee, I think this sounds like an advertisement for RDI. Oh well. So be it. I’m not getting a kick back, other than the thrill I get hearing stories from other parents seeing their kids change, other than the thrill I’m getting watching my own son change. It’s not sexy. It’s not quick. It’s a marathon and I’m barely up off my starting block. But I’m in it for the duration. How could I not be? If my son had polio would I shrug my shoulders and go shopping for leg braces? Or would I believe in regeneration and then cheer when he brought home the gold. Sorry to be melodramatic. But it did actually happen.

I’m not anti ABA, per se. It never made sense to me but my son was always very verbal, he looked ‘normal’ albeit eccentric, smart, and VERY HIGH NEEDS for the first three years of his life. Our beginning was very different than many other families out there struggling with ASD, so I’m not qualified to speak about ABA, about how it can help. I know families that do RDI and see remarkable things. I know families that use ABA and RDI who see remarkable things, who’d snarl like a mad dog if you got close enough to try and take either one away.

I mean, don’t listen to me. What do I know? I’m just a gal with one kid on the spectrum, a gal who doesn’t get enough sleep, enough sex, enough social contact, enough fresh air. I stand too close and guffaw at slightest hint of levity. I shop in my pajamas. I have a problem with salami and potato chips. Clearly I’m just this side of sane. Go to the website; read the literature; ask around; go to a 2-day RDI workshop; get the book; watch the dvd; see for yourself.

These kids’ brains CAN be remediated but not unless we guide them. They’re not going to grow out of it and I want more for my son than a job stacking cans in Aisle 5. Not that there’s anything WRONG with being a clerk, but there is if you’re doing it because you don’t feel you have a choice, because the ability to think creatively and flexibly has never been learned. Then there is something wrong. We are failing our kids if we aren’t believing that they can have the lives of their neurotypical peers. Being a clerk in the Stop and Shop may be a fine fine job but it doesn’t take much mindfulness. Don’t we want our NT kids to realize their potential? Why do we short change our ASD kids and assume their potential is in a different sphere?

RDI doesn’t teach life skills, it teaches this mindfulness, it teaches our kids how to think, it teaches them how to develop their own internal supervisory system. If our kids are prompt dependent, they are operating with an external supervisory system and if that’s what they need, there will be no independent living for them.

There are some basic changes in how you are with your child that RDI asks of you. (1) Talk less, use non-verbals more, whether your child is verbal or not. Speech is just ONE part of language, of communication. We need to help strengthen the others by using more non verbals, gestures, facial expressions. Try nodding rather than say yes so your child has to look at you to get an answer. Don’t ask them to look, don’t prompt, just give them a reason to look. (2) Use more declarative language and less imperative. Imperatives are questions or quizzes or prompts, they require an answer, an action and very often, the RIGHT answer, the RIGHT action. Declaratives are statements about our experience. They don’t demand an answer. They are an invitation. Shoot for 80% declaratives, 20% imperatives; that’s healthy communication, no matter what your age. (3) Slow down. The words, The movement, The action. Our kids need more time. There not fast processors. They are often trying to organize and sort huge amounts of input on separate cables. Things don’t come in as a whole, they’re not good at chunking. They aren’t often clear about what is the important piece. They aren’t often able to tune out the traffic noise or the movement of the rustling leaves and zero in on your face and what you are saying. It all comes in at equal weight.

I’m a big RDI fan. If you drop by, I’ll do a little human pyramid in the shape of the letters. I like the GFCF diet and digestive enzymes and neurofeedback and the OT sessions once a week but RDI is about helping Fluffy develop his OWN MIND so he can go out there and join the improvisation called life.

I’m all for that.

Navigating the social waters

2006-01-05T16:44:00.000-05:00

Christopher and his friend J. are setting up the GameCube in the other room. Months ago, Christopher made up a language called Xenon and has been speaking it at home, much to my annoyance (it's made up of a lot, A LOT, of consonants, and for some reason he has to speak it REALLY LOUDLY). I hadn't realized that Christopher had shared this language of his with anyone else but us until just now. Apparently, J. is aware of it and knows some of the words (or rules, rather). Somehow I know that if Christopher and J. were in a room with several other boys, J. would most likely not speak Xenon with Christopher.

At the age where most boys are becoming self-conscious about their behavior and actions, Christopher remains oblivious. Most boys his age are ending their imaginative play, or at least limiting it to solitary home sessions. Christopher still discusses at breakfast what or who he's going to "be" for recess. I love this about him, I truly do. His ability to lose himself in another world, usually a world of his making, is amazing. It's also going to end up making him a target at school. And, unfortunately, he doesn't play sports. At all. He takes Tae Kwon Do, yes, but team sports hold no fascination for him. He's one of a very small group of boys at school who don't play football or basketball during recess and I worry that the boys who do play sports will eventually give him crap for it.

Luckily, we live in a fairly sheltered community. The third-graders at our school still believe in Santa Claus and the Tooth Fairy. I certainly don't think he's in any immediate danger of teasing, but he isn't going to be so lucky for much longer, I fear. His quirks and his oddball personality are going to make the other boys (and girls) uncomfortable and that uncomfortableness will manifest itself into teasing and shunning.

I'm hoping we can channel these wonderful things about Christopher into more socially acceptable avenues, like drama. And I know that there will always be one or two kids who appreciate him for who he is and who will still play imaginative games with him well into their later primary school years. But I still worry for him, worry for the emotional damage he's sure to endure.

I wish that society at large accepted and valued quirkiness as much as it does athletics.

A Grandparent's Folly

2005-12-29T10:23:00.000-05:00

Two comments from this post, specifically Amy's and Susan's, plus a conversation I had with my parents this morning inspired me to write this post. My kids, Christopher and Sophia, are at my parents' home for a few days. For details, see here.

My parents don't like Christopher's medication. They don't like him when he's on the meds. My dad said, "We gave it to him and about a half hour later he was just so mellow and he wouldn't eat." My mother said, "I just don't like it. He's not himself. He's so quiet!"

Christopher takes 10mg of Ritalin in the mornings and recently we've added an afternoon dose because 1. he needs it, and 2. the bounce-back anger was getting in the way of our interactions. Yes, it mellows him. Yes, it makes him quiet. And yes, his appetite is decreased when he's medicated.

But to say he's not himself gets me Irish up! During the first week of our medication trial, I cried because I finally saw my child. The hyperactivity was gone and he talked to me. Really talked to me instead of at me. He's able to hold a conversation. With the medication's help he's able to let his sister talk on the phone without whispering, "Tell her I said 'poopyhead'!" over and over and over and over (which is what he did this morning when I was speaking with Sophie).

When my father got the phone back, I said, "Let me guess. Christopher hasn't had his meds this morning." He said no, and made the comment about him being mellow and not eating. I asked to speak to my mother and she said her peace about it. I explained to her that I thought he was more Christopher on the meds than off, that he could actually think, that it's a good thing we have the meds.

I don't think I convinced her. She said, "But we love him just the way he is!" And of course they do, and of course we do. But he isn't himself, yet, when he's off the meds. He is hyperactivity, he is lack of impulse control. He is spinning in circles, he is bouncing off the furniture, he is moving from one activity to the next with no focus or determination. He isn't Christopher.

And that's why he takes the medication. So he can be Christopher.

But where does it come from?

2005-12-27T06:22:00.000-05:00

You recall that I met with some parents before Christmas to discuss their child's excessive anxiety, and how we might deal with it. The conversation went reasonably well, all in all. At the beginning of the conversation, I gave them examples of this trait, so they could understand what was causing me concern. With only the one child, they have little basis of comparison that would give them some level of objectivity. They have no larger perspective on their child. To them, their child is normal. He has his little idiosyncracies - who doesn't? - but he's what little boys are like, right?

Well, not entirely, no. So I gave them examples. When this happens, I said, he responds thus and so, whereas a more standard response would be this or that. The parents liked the examples, started providing some of their own. They seemed to accept my suggestion that their child is overly anxious, but the focus of the examples they provided, while entirely predictable, was misguided: rather than seeking to develop responses to the anxiety, they were seeking causes for it.

"I think it started back when we were doing renovations on the house," mom told me. "I was leaving the house with our son, and he looked up and saw the workmen tearing up the roof. He was only two, and he was certain that the men were taking his house apart so they could steal his toys. No matter what I said, he just couldn't shake that idea, and ever since then, it's been a total downhill slope."

So mom attributes his current anxiety levels to that pivotal event, which took place a year and a half ago.

Dad had other ideas, and threw out another possibility. "When [this other scenario] happened, he was so worried. He fretted and fretted and fretted over it." Dad described how they'd responded. If they'd responded a different way, he said, their son would have turned out differently.

This is very common thinking. My child is a certain way. It must have to do with me. It must have to do with an event. It has to be attributable to something!

No, it doesn't.

In cases of great trauma, yes, but in the average run-of-the-mill this and that of life, it doesn't have to be attibutable to anything at all. Think about it: Their two-year-old saw some workmen on their roof. For just about any other child, that would be a positive event. How interesting! How exciting! Can I hammer, too, mom?? For their child, however, it was a source of anxiety. Why?

"Your boy is anxious," I said to these kind and concerned folks, "because he is anxious. A different child would have seen those men on the roof and responded in a different way. Your boy responded with anxiety because he is that kind of kid. He is who he is."

The issue, of course, is not how did he get this way, but what do we do with the boy that he is? How do we help him cope with his issues?

I firmly believe the kids we get are the luck of the genetic draw. You can modify a negative trait, you can encourage a positive one, you can give tools to strengthen weaknesses and tools to foster strengths, but in the normal range of family events, you do not cause a child to be anything other than what he is.

(This does not excuse all those parents whose children's horrific manners and gross social misdemeanors are caused by weak parental guidance. Those children are fairly easy to pick out, though, because when with another, firmly authoritative adult, they can and do behave appropriately. If a child is a screaming, manipulative terror only with a specific person, the problem probably does lie with that person.)

An anxious child does not need to be taught or provoked into anxiety: that is their innate way of responding. Anxiety is their default response to the events and people around them. I think dad had caught this concept by the end of our evening, and was seeking with me ways to help their son. Mom, an anxious person herself, had not yet made this mental leap. Her desire, naturally enough, is to prevent her son from feeling bad. Thus, she wants to protect him from worrisome stimuli - except, for this child, the whole word is worrisome!

I have a little concern for the boy. If mom continues to try to structure his entire world so that he need never worry, she is only exacerbating the problem. Instead of teaching him to deal with the anxiety that is innate to him, she tries to eliminate external triggers for it. Ironically, her conviction that his anxiety has an external source will inevitably make him even more a prisoner to his fears than he already is.

My comfort comes in my conviction that I am only the first in what will eventually be a long line of concerned people. I hope that, in time, she will realize she must, for her son's sake, develop other ways of helping him, ways that will strengthen him to help himself.

Because it's part of who he is.

away in a manger

2005-12-22T21:03:00.000-05:00

But Mary treasured up all these things and pondered them in her heart. (Luke 2:19)

I am not a religious person. I was raised in a Catholic family, but left the church when I was in college. I don't participate in any sort of organized worship, and, post 9/11, I am not sure if I believe in God any more. But five years ago, when Henry was a tiny baby who didn't sleep well and spat up all the time and often cried inconsolably, I started going to church again. I wasn't looking for answers, I just needed some peace, or at least an hour or so a week to be still with my own thoughts. Call it prayer if you will; I just craved silence.

Sometime in the Christmas season that year Henry was a baby, I heard a beautiful sermon about Mary. The priest at the Episcopal church I was attending talked about how we focus so much on Jesus and his role in the Christmas story that we tend to forget about Mary. He talked about how difficult it must have been for this very pregnant woman to ride a donkey to Bethlehem, a town where she knew no one, and give birth in a barn, attended only by her husband. Having just had my own baby, in a sterile, fully-staffed hospital, surrounded by family, I could indeed imagine how difficult this must have been.

But the priest went on: Jesus' birth, he said, was only the beginning for Mary. There isn't much in the Bible about Jesus' childhood, but think what it must have been like to raise this child. Luke tells the story of Mary and her family travelling to Jerusalem for the Feast of Passover. At the end of the feast, Mary and her husband returned home with the other travellers, only to find that Jesus was not with them. According to the Gospel, they looked for him for three days, only to find him, at last, still in Jerusalem, talking theology with the rabbis. At the time, theologians think, Jesus was probably about 12 years old.

Luke tells us that when Mary and Joseph finally found their son, he said to them, 'Why were you searching for me? Didn't you know I had to be in my Father's house?' He goes on to say that 'they did not understand what he was saying to them.'

Imagine, the priest said, how frantic Mary and Joseph must have been when they could not find their son for three full days. Imagine how angry they must have been when they realized that he had willfully left the group and stayed behind, without asking their permission or telling them of his plans. Imagine how confused they must have been by this child who was so wise beyond his years.

Jesus, the priest said, was a challenge, yes, but he was also a child like any other child. He probably played with toys and with other children; he cried when he was hurt and laughed when he was happy. And Mary was a mother like any other mother. She would have nursed her baby and slept with him in her bed and worn him in a sling during the day. But Mary had other children; Jesus was not her whole life. And so this special child--this quirky child--would have been a challenge to her as he grew.

In the Catholic church, Mary is held up as an icon of perfect motherhood. She is depicted as patient and kind and loving; religious art represents her holding her baby, her face a mixture of serenity and deep sadness. Growing up, I assumed that the sadness came from some intuitive knowledge that this child would be killed for his beliefs and teachings, but now I am not so sure. I wonder if the sadness is the same sadness so many of us with challenging and quirky children feel every day as we watch our children struggle to find their places in the world.

But at the same time, Luke tells us, 'Mary treasured up all these things and pondered them in her heart.' Mary knew her son was different, special. Quirky. And she loved him the more for it.

I said before that I am not a religious person; I do not believe that Jesus is the son of God, not in the way that the Christian church teaches. But I believe that Jesus lived, and that he was indeed a great teacher and leader. And every Christmas, I think of that sermon, and I think about Mary and her son, and the challenges of raising him. And even though we don't celebrate the birth of Jesus in our house, I find myself thinking often about what it must have been like to be that boy's mother. And how blessed I am to be my boys' mother, quirks and all.

I wish you all a peaceful holiday season, and a New Year filled with hope and joy.

Selective Mutism and the Search for a Special Tool

2005-12-18T21:25:00.000-05:00

In the Trenches is pleased to welcome Amy Anderson as a guest poster. Amy is the co-founder and co-editor of the fabulous Mamazine.com. She's been teaching writing to native and non-native speakers of English at a local university since 1995. She's stepmom to Vincent and mama to Henry and Josephine, and she lives in Sacramento with her husband and kids. This post first appeared at Mamzine.com in September of 2005.

This week has been a tough one. Henry started first grade, and while he has a warm, experienced teacher (the kind you just want to be hugged by yourself at the end of a long day), new routines are always a little harder for Henry than they are for our other two kids. The baby who didn't figure out the whole breastfeeding thing until he was three weeks old, and even then didn't seem convinced life outside the womb was all that cool, is still in the "slow to warm up" category, which means changes are greeted by irritability and tantrums.

In the past few years, we've started to figure out some of the reasons behind our early conviction (like two minutes after he was born) that Henry is a bit more emotionally intense than many kids. After two years of preschool, when he still wasn't talking to his teachers or to many kids, we realized that the funny, strong-willed, talkative little boy we knew seemed like a delusion to many who knew him. When I'd tell stories of funny or frustrating moments with Henry, even close friends would stare at me, puzzled, and say, "I just can't imagine Henry saying that." After a while, I realized they were right—how could they, when he never spoke around them?

I asked our pediatrician about Henry's silence around others. "Oh, he's probably just shy," was the answer she gave—and the one I wanted to hear. Made sense to me, a shy kid who, as a fifth-grader at my second new school in two years, spent every lunch period in the library reading. So I told myself to calm down, to let Henry be Henry, and to stop looking for problems all the time. After all, I'd noticed that white, middle-class, educated moms like me are often judged for being too quick to label and even to medicate their kids if they're just the slightest bit different from others. Surely a wait-and-see approach was the best response.

After a conference with his preschool teachers at which they told us they'd never, in their many years of teaching, seen a child like Henry, however, I realized I was going to have to get some answers. Like a true bibliophile, I went on Amazon.com and typed in "shy children" and scanned the results, noting that several titles with the term "selective mutism" had appeared. I Googled "selective mutism" and found out it's one of the ways anxious kids show their true fears—by shutting down and not talking. All the descriptions of kids with selective mutism fit Henry: a frozen appearance and silence in many situations, normal language development, a distinct difference between his relaxed, talkative behavior with some family and close friends and his silent, almost catatonic behavior with most others. I read for hours, and then I turned off my computer and tried to forget what I'd read.

Reading the term "selective mutism" scared the hell out of me. Sure, relatively speaking, an anxiety-based disorder isn't the worst thing that can happen to a person. All the families whose kids have physical disabilities, or autism-spectrum disorders, or serious illnesses are facing far more difficult daily struggles than we are. But having a label attached to my kid terrified me. So did the fact that I'd been the one to find it. Wasn't someone more expert than me supposed to be pointing these things out? Oh, god, I realized. I'm supposed to be the expert here, the all-knowing and wise Mother. Fuck.

Fortunately, Henry's pediatrician came across an article about selective mutism in a medical journal and sent us a copy, with a note saying this seemed to explain Henry's behavior. Armed with a medical expert's opinion, I moved into action, doing hours of research, buying books, downloading current research, and putting together information for his teachers. In short, I tried to be in control.

No one, however, had told Henry that I was now in control. Or, to be more exact, no one had told that part of him that greets the world with anxiety that All-Powerful Mother was on the job and the anxiety needed to leave. In fact, my own tension about Henry's inability to talk at school and in most public settings only exacerbated his anxious behavior. "Do you want to wave goodbye to your teacher?" I'd ask in that straining-to-be-nonchalant voice he saw right through. In trying to help, I became almost the worst person for him to be around. The two of us together were one big ball of anxiety, which the rest of the family stepped cautiously around.

A year after his official diagnosis, things were slightly better. I got better at being calm, at least on the surface, when he wouldn't speak to someone. I gave up caring if someone thought it was enabling when I said hi for him. I figured I'd model appropriate social behavior, and he'd know what to do when he got relaxed enough to do more than wave at his friends. (What a relief it was to find, in the most recent study of kids with selective mutism, that the parental behavior many criticize as enabling is actually a much-needed way of helping our kids manage their anxiety when well-meaning adults persist in trying to talk to a petrified kid.) Thankfully, when he was engaged in playing with other kids, Henry could talk (and yell) like the rest of them.

He made it through kindergarten, too, although not without a lot of intervening and advocating on our part. Despite the letters from his doctor and packets of information about selective mutism we provided his teacher and school, we still had to spend hours convincing his teacher that he is not, in fact, autistic or simply stubborn.

When kindergarten started, he didn't talk in class at all at first, too petrified to even say, "Here!" when the teacher called attendance. When it was his turn to be the Special Helper, his teacher skipped him because he couldn't stand in front of the whole class and state the date and day of the week in complete sentences.

He became obsessed with completing his written work perfectly, which meant he never finished it at school. "Perfectly," in Henry's mind, was just like the teacher-made model she showed them as they began each assignment. He came home and cried about being the last one to finish every day, yet when his teacher told us about it herself, she said he clearly didn't care about finishing, that he sat impassively when she told him to take it home to finish. When I tried to tell his teacher that this obsessive-compulsive behavior, like his mutism, is a way of trying to control his anxiety, and that all the readings we'd given her about selective mutism state that kids like Henry look their calmest when they are most anxious, she told me she wished she could see him the way I did. I wish she could have, too.

We asked her to modify the Special Helper activity for Henry and allow him to point to the day of the week until he was able to vocalize in front of the class. She wouldn't. We asked her to find other ways to evaluate Henry's academic progress since him reading aloud to her wasn't going to happen any time soon. She refused.

We never did convince her that maybe teaching all kids exactly the same way, with no exceptions ever, might not be the most effective approach. But when she told us to get him evaluated for special ed eligibility and then, and only then, would she consent to modify her evaluations of him, we did. Good thing, too, as that's how we met speech therapists, a school psychologist, and special education teachers who reassured us that any other teacher would have made the modifications Henry needed—and that he'd get one of those teachers in first grade. While Henry didn't qualify for special education services, he did qualify for a 504 plan, which gives us the legal right to ask for accommodations for him, such as having a parent administer oral evaluations of his reading skills while a teacher listens.

It didn't hurt, either, that the tests the school team had administered showed that his math and reading abilities were above grade level. Despite how much I detest standardized testing in the schools, after months of report cards and conferences in which his teacher told us she couldn't measure his abilities and would need to give him low scores in reading and math, I couldn't help wanting to wave the test results in her face. "See?" I wanted to ask. "We weren't lying to you. See how these adults used kindness and patience to get Henry to talk to them? Would it have killed you to give that a try?"

I wanted her to promise not to doubt her future students the way she doubted Henry. I wanted her to say she'd give these four- and five-year-olds she's been working with for over thirty years a bit more compassion, a little less antagonism. Her attitude isn't personal, though. It's reflective of the larger school culture, which teaches the "normal" kids to be more normal and can't figure out what do to with the rest.

When I asked who Henry's first-grade teacher would be before his kindergarten year ended (something the special ed team had assured us we could find out, as it would help us get a head start on getting him used to the new teacher, as well as give the teacher a chance to prepare for working with Henry), the school principal's response was, "No way." I swallowed my pride and begged him, arguing that Henry needs more time than most kids to get used to changes.
His reply took my breath away. "Look, do you know how many parents come in my office telling me that their kid is special?" he ranted.

Stunned, the only response I could think of was, "No, how many?" "Ten to fifteen a year," he said.

That seemed like a remarkably small number for a K-8 school with several hundred kids. I sat silent, then stuttered, "I don't know what your point is. Are their needs less special simply because there are fifteen of them?"

And then I cried, furious and humiliated to have been beaten down by the ignorance of this school administrator. After a year of trying to work as an advocate for my kid, I was exhausted by the lack of compassion I'd seen. Didn't this man understand that no parent wants to come in and argue that their kid is special? Didn't he have the slightest clue how painful it was to even ask for special treatment? My kid couldn't talk at school, even to ask to go to the bathroom. Did this man think I really wanted to be here, dealing with this? I'd obviously trade Henry's "special" status in if it meant he could face school without fear; since that wasn't an option, I was here, trying to smooth the way for Henry a bit and instead finding myself on the verge of being sent out of the principal's office.

Really, of course, what I wanted most was for this teacher and this principal to be the reason Henry had a hard time last year. The reality, though, is that while they certainly played a role, they're only a tiny part of something he'll be struggling with for his whole life. That's why I want to focus my anger on them; it lets me forget, for a minute, that we'll have to repeat this process of education and, I hope, compromise with teachers for many more years as Henry makes his way through the school system.

Being mad at the school distracts me from my own guilt as well. After all, on a genetic level, it's my (and my husband's) fault that Henry is who he is. Having been raised in a culture that says mother is always to blame, I can't help but wonder during some of those 3 a.m. sessions of worried insomnia that the books I always dismissed as crazy for saying if you worry during pregnancy, you're more likely to have an anxious child are true. I worried that my anxiety during my pregnancy (fueled in large part by those same books) may have somehow affected Henry at some formative prenatal stage. In the daylight I can say, "Well, duh. Of course a woman who was more anxious during pregnancy than most is going to have an anxious child. Not because she passed her worry through the placenta, but because she's probably got a genetic predisposition to worry slightly more, and those same genes got passed on to her baby." But in the wee hours, everything seems to be something I could have avoided, if only I'd tried harder, been more selfless, been more than I am.

We could have moved Henry to a different school, for instance, except that getting our three kids to their three different schools was already challenging enough—and Henry's school is right across the street from our house. Plus, he knows almost all the kids in his grade from preschool or playgroups or other neighborhood activities, and taking him away from friends he is able to talk to seemed downright cruel. At 3 a.m., though, I doubted every decision we'd ever made, from where we chose to live to my continuing to work at a job I loved, since that commitment meant I couldn't get Henry to faraway schools that might work better for him. My limits as a mother, always apparent to me, haunted me even more during my predawn hours of worrying.
Maybe, as Henry moves through the grades, he'll get more of the accepting and nurturing variety of teacher, and we won't have to repeat the hellish scenes from last year. Maybe I'll get better at stating his condition and needs calmly and unemotionally. Maybe those needs will gradually disappear as he grows older and better able to manage his anxiety.
This past week, I've been calling psychologists daily, trying to find one who has experience working with kids with selective mutism (and who our health plan will allow us to see). When I broached the subject of meeting someone who has helped kids like him feel better about talking to people, Henry lit up.

"Does he have a special tool?" he asked excitedly.

Puzzled, I asked what kind of tool he meant.

"You know, to open the cage and let all the words out."

"Oh," I said, as the image he'd come up with dawned on me. "The words you want to say?"

"Yeah! He'll open the cage and millions of words will fly out!" he said, showing me, with a sweeping gesture, how it would look.

All I want is that special tool. Lacking magical powers, I'll use the tools I have: my anger and my love.

I Wonder What It Could Mean?

2005-12-14T16:34:00.000-05:00

Our guest poster today is Kyra, who writes This Mom, a loving and amazingly written blog about, among other things, her four-year-old son. From This Mom: "I considered calling this site, My-Son-Has-Aspergers.com or AspergerCentral.com. You see, my 4-year-old son (who I will be calling Fluffy) has Asperger Syndrome. You may call it ASSberger or AHSberger (gezundtite), or simply the initials A.S., and sidestep the--whoa! burgers of ass! isn’t that a riot! sort of banter." And the most wonderfully, heart-breakingly sweet words I have ever read, "I need people who can embrace my son’s eccentricities and frothy little scientist speech, climb inside his world and softly whisper “grow”, who believe that we are gonna lay down new juicy beautiful connecting-to-the-world-and-people tracks, who celebrate, cheer, and challenge until this aspergers slips off like a coat that no longer fits."

Fluffy had colic. He also had Asperger’s but we didn’t know until he was closing in on four years old. It explained a lot, it did. And it helped a little with the inadequacy. It was like huffing and puffing to cover ground, red faced and out of breath, items tumbling from you hands, your intense child clinging to every appendage, completely disinterested in other kids or toys, while a steady procession of everyone else you know with kids waltzed by, waving, baking cookies, having playdates, nursing baby number three while baby number two and baby number one played quietly on the floor by the waldorf activity basket and serenely self-weaned, only to discover I’d been scrambling on a giant treadmill mounted on square wheels and pulling a large weight. Oh. No wonder it felt hard.

We’ve made huge progress since then especially now that I know where we’re going and a bit about how to get there, we’ve got our RDI map and a much better understanding of ASD and Asperger’s and, most important, of Fluffy and his particular strengths and challenges, but I’m still up against my own inadequacy. I mean it. Yes, yes. I’m devoted and interested and passionate about giving my son what he needs. I know it’s okay for me to need and want to pay attention to myself, to carve out the time to reclaim my own pace and rhythm. I know it’s right and normal and necessary for me to need time alone with my husband, my friends, myself. I know I do a lot and I also know I do it imperfectly, that inside my mind I sometimes say, OH MY GOD PLEASE SHUT UP, or out loud I effuse, Yeah! to which my son replies, why, Mommy? why did you say that? and the truth is, I said it as I drooled into the stream of sun coming in through the window, my mind blank as the beach in winter and I have no idea what he was saying to me.

But the inadequacy has to do with not knowing how to help him sometimes or knowing that I can’t help him all the time, that sometimes I am going to attend to other things like household things or mommy things, sometimes I’m going to bring him along on errands that I know he can handle because I could wait until he’s asleep and rally out on my own but I don’t always want to, sometimes I want it to be easier, to have life in our household be more like regular life rather than one during which all waking hours are tuned in to monitoring activities, sensory input, our own responses and interactions, monitoring how much stimming my son is doing, balancing the approach to getting dressed everyday, shall I lay out the clothes and use declaratives? Shall I lock him in his room and not open the door until he’s dressed? Shall we just go through the day, every day, in our pajamas? It’s not that other households don’t struggle with dressing or chores or compliance or ways to divide up time and attention, it’s just that in my imagination, the stakes don’t feel as high because, well, they’re not.

I videotaped Fluffy and me for the upcoming RDI 4-day parent training intensive in January. We were having lunch, and aside from being aghast at my own behavior at the food trough, seriously, what the hell was going on with my snorting and smacking and chewing and the eating with the fingers and the sneezing and particles of chips flying through the air threatening to crack the camera lens? oy vey. BUT, I was also taken aback by the one-sidedness of the conversation. I know we are doing better in this area, but I do the work, the looking, attending, responding, expressing, emoting, gesturing up the wazzoo. It was like the Fluffy show and I was Ed McMahon character fawning and guffawing and falling out of my chair to show my devotion. I exaggerate and of course, yes, I am trying to help Fluffy want to tune in to the other guy, to the world, but, you know, it’s so out of balance. It’s okay now. He’s only 4. But no one is going to want to talk to this guy if this is still going on in a few years. No one. Think about it. You know those people who talk at you, endlessly, who never ask about you or when they do, you know they’re thinking about something else, waiting for you to pause to take a breath so they can dive back in and take over.

The other night I had a dream during which Fluffy and I were trapped in a maze, doors and corridors and rooms leading around corners, past other families that lived there, that never left, that shepherded their children to the indoor bus stop and watched as they were driven down the hall to the indoor school. At one point, we were in a room with a group of bathing Japanese, hot water on the floor, steam rising up all around us. I had to climb up a ladder, one of those grand mahogany ones that you see in the movies, in the library of the well-read with floor to ceiling books. I had to use both arms to hold on, to climb; I needed Fluffy to use his own muscles to hold onto me, but he wouldn’t and as we neared the top, we started to fall, down down in the slow motion of suspense thrillers that goes on for an impossible length of time. I was worried about the landing, worried about the hot water, the other people, the sharp corners of the bookcases. At the very last minute, a fat crash pad materialized and we landed on that, laughing, relieved, unharmed.

Gee, I wonder what it could mean?

Who Knows You, Baby?

2005-12-12T07:55:00.000-05:00

Later this week I am scheduled to meet with the parents to discuss with them my concerns over their child’s excessive anxiety. Anxiety to the point where I think he may have an actual disorder. This is not a child who worries a bit about going to daycare, and misses mummy a little more than most. This is a child whose level of worry and whose practice of fixating on points of anxiety interferes with his ability to make friends, enjoy his surroundings, live his life. I think it needs to be explored by people more expert than me, so that, if experts deem it necessary, it can be dealt with before it becomes even more of a handicap.

I am a little concerned about how it will go. I quite like mom. We have a good relationship. She been very open to my input on small daily events, even soliciting my advice on occasion. This, however, is not a small matter. Dad I have only met once, so I can’t gauge how he will respond. In all honesty, I think the anxiety issue probably comes from mom, but judging from what mom has told me of how they respond to their son’s emotions, they are both fostering his anxiousness. So, he gets it by nature and nurture.

And so I am meeting with the parents to discuss how he’s managing at daycare. You know that truism, “You are the parent, you know your child best”? I’m kind of ambivalent about it. I have three children, 12, 16, and 20. One thing the years have shown me is that I do and I don’t know my child. I’ve watched my fourteen-year-old bring home new friends, and I’ve thought, “Why on earth is that kid one of my kid’s friends? They’re so different! What could they possibly have to connect them?” Then I’d watch, and in their interactions, I’d see an aspect of my child I’d never noticed before. Seems that friend knows my child, or a facet of my child, better than I. In fact, I like watching my kids with their friends for that very reason: I learn more about them, things I wouldn’t otherwise have experienced.

It’s certainly true that we parents love our child best. If you have a gut instinct that’s telling you something about your child, it needs to be taken seriously. It’s also true that you know your child in his home environment. But do you know who he is at daycare? At school? In other environments with other people? If he behaves differently in these places, is it because he “can’t be himself” there, or because he’s being the rest of himself?

The other thing about parents, is we generally have a pretty small sample size on which to base expectations and from which to make generalizations. Most families in our society have one or two children; three at the very most. Anything more than that is quite unusual. Many parents have had little experience with children before having their own. So, five years into this grand journey of parenting, you know one or maybe two children intimately. That’s a pretty small sampling.

I strongly suspect that my daycare child’s parents have no idea there’s an issue. This is their only child. To them, he is normal. They have no real basis of comparison. Yes, he’s “a bit of a worry-wart”, mom tells me, but “all kids like their routines”, right? She doesn't know. My first child was colicky, screamed for hours and hours every evening, but, being a natural born optimist and having no prior experience with babies, I told people she “was a little fussy”. It wasn’t till my second came along that I fully realized she had been a heckuva lot more than “a little” fussy!! I didn’t know.

I have the unenviable task of suggesting to them that he’s rather more than “a bit of a worry-wart” and that while children do like their routines, this particular boy’s need for it borders on obsessive. I will be the first person to suggest to them that their boy is not “normal”. When I tell them this, it will also be suggesting that they, as parents, do not in fact know their child best.

What I’m hoping is that they will co-operate with me in some new patterns of interacting with their son. I’m hoping that they will be open to trying new approaches to his anxiety, approaches that ease rather than increase it. I’m hoping that they will be willing to take him to their doctor, even to make an appointment with a child and family therapist.

But they may become angry and defensive. They may tell me that I’m wrong, that they know their child best, and there's nothing wrong. They may say nothing, and simply withdraw the child from my care.

They may even tell me I’m worrying needlessly. Wouldn’t that be ironic...

So, I take a deep breath and prepare myself to give some lovely, loving, kind and conscientious parents some unwelcome news. I hope it goes well.

Literal Thinking

2005-12-08T22:00:00.000-05:00

This is the first in a series of guest posts (Mary P and Candace and Susan have gone Christmas shopping and will be sipping martinis together and talking about how we got you all to do the work here for us. Okay, not really, but we are delighted that some of you have expressed an interest in writing with us. Keep those e-mails coming!). Laura describes herself this way: 'Having previously spent time working in the publishing industry making calendars, and in the Army admiring men in uniform, I am now a “homemaker” on my income taxes. I have 2 daughters, ages 10 and 8. The oldest, G., has Asperger’s, and the youngest, S., is her polar opposite. I have a long-suffering husband who likes my red hair. I live in MN where I wear sweaters year round. I like to sew, and I watch a lot of Grey’s Anatomy.' We are delighted to have Laura with us.

One of the things I love about my daughter and also can’t stand is the fact that she is so literal. I was unaware that this was what was going on inside her head until she was diagnosed with Asperger’s towards the end of 3rd grade. Once I read everything I could get my hands on, her behavior made a lot more sense. It still frustrated me to no end, but it made more sense. To illustrate this behavior, I give you the following highlights of literal behavior from the past several years:

3rd grade: G. decides that her eyebrows are too bushy and bothering her. What does a literal child do in this situation? Well, Mom and Dad shave off unwanted hair, so what should G. do? Shave off her eyebrows. When she came downstairs and announced to me what she had done in a really proud sort of way I was completely at a loss for words. Well, at a loss for positive, affirming words. The 4-letter ones were right on the tip of my tongue. NOTHING prepares you for your child shaving her eyebrows, which then gives her a perpetually surprised expression until they grow back. Luckily this was right before Winter Break, and they completely grew back in. My friend K. was not as lucky, and has to invest in eyebrow pencil.

4th grade: The Dreaded “Your Body & You” discussion at school. G. already knew all about sex and periods, etc., so she found this part rather dull. However, they gave the girls little care packages of deodorant, pads, toothpaste, etc. Which I thought was rather nice. Days went by and G. started to complain of a rash on her forehead. Then she started complaining of a rash on the back of her neck. Finally she confessed that in their class they had discussed that the places where you sweat the most are under your armpits, on your forehead, and the back of your neck. She had been putting scented anti-perspirant on all of these places, even though she was a mostly scentless 9 year old. Because I am not an “authority on personal hygiene” (meaning I don’t have a degree in Health, or haven’t done a commercial on Speed Stick) we went to the doc. Dr. K. is a peach, and told her not to put on anti-perspirant until she starts to smell like a longshoreman. We did specify an actual age; otherwise she would have been waiting for that longshoreman smell to appear.

Now that G. is in 5th grade, and I have 2 years of practiced literal-response thinking in my own head, things are better. It has been a relief in some ways – I realize she isn’t trying to be a brat, she actually doesn’t comprehend that what she thinks could possibly be wrong, and the comments she makes are often quite funny. She is willing to somewhat agree that I may actually know what I am talking about in some situations and not require an “Authority” to tell her the correct response. There are still times when my brain has shut down and can’t “think literal” anymore that day, but she is pretty reasonable when this happens.

And she has also started to learn and understand embarrassment, which was a big step. For instance, when she starts to give her sister S. a hard time about how she Xeroxed her fanny like they did on “Rugrats All Grown Up” (yes we have a copy machine, and yes, it caused me to laugh until I cried), all I have to do is casually point at my eyebrows and she shuts up quicker than you’d think humanly possible. And then I start to think that maybe this literal thinking stuff isn’t so bad after all.

it's your turn

2005-12-07T16:49:00.000-05:00

In the very first post ever at In The Trenches, Candace wrote, 'I want this to be a place where parents of challenging children can come to commiserate and get ideas. I want this to be a place where people who have challenging children in their lives (aunts, uncles, daycare providers, teachers, etc.) can come to share stories, to learn things, and yes, to vent, because those of us who love challenging children need to vent, without judgment. I also want this to be a place where good days can be celebrated.'

You all have leapt in wholeheartedly, leaving thoughtful, heartfelt comments and sending us wonderful e-mails. But now we want you to do more. We are soliciting posts from you, our readers. Tell us your stories--about good days and bad, about successes and lessons learned. Share what you know, or ask questions--someone else may have an answer.

If you are interested in writing a post for In the Trenches or have a topic that you would like to see addressed, contact Susan at fridayplaydate at cox dot net or leave us a note in the comments section. We are so glad to have you here and we can't wait to hear what you have to say.

What a good day feels like

2005-12-06T09:56:00.000-05:00

Christopher had Tae Kwon Do on Saturday. He doesn't usually go to the Saturday class; it's called Family Class and it usually moves really fast and there isn't much fun. Any, really. In his regular classes, there's always a modified version of dodge ball or some other game at the end. Not in Family Class. But he's promoting to the next belt level this week, so we're required to attend as many classes as we can until promotion. He does not like Family Class. He had chosen to go to class on Saturday instead of Friday night, not remembering that he'd be going to Family Class. When he realized, on the way to class, that he'd be in the Family Class, he was upset. But he rallied quickly and said he'd be OK.

During class he was amazing. He was listening, he was focused, he was just like any other kid. Luckily, this Family Class was a bit different than usual; there were tons of instructors and not that many kids. He basically had a semi-private lesson. At one point, the kids had to divide up into pairs, to work on the self-defense moves. Christopher chose a partner, spoke directly to him, looked him in the eye, and worked well with him. I even saw them joking a bit together.

Let me assure you that I had to go to the bathroom so I could cry in private.

He nagivated the social waters all by himself and he did it well. He performed exactly the way he's supposed to in class. He didn't spin. He didn't fall down. He didn't try to be the center of attention. And his forms improved about 500% in that one class.

This is what every parent of a challenging child hopes and prays for: a normal day. My God, we had one! And I cried! And another parent (who happens to have an autistic child) took me aside and said, "Christopher has been doing so well in classes lately! I bet you're so proud of him." She knows.

A good day feels like nothing else. It's amazing, and bittersweet, and hard-won.

Some Days are Like That

2005-12-04T15:17:00.000-05:00

I had been venting my frustration into the listening ears of my husband. I've been working so hard, so consistently, so insistently with this particular child, who this week seems wholly impervious to my every tactic. (Husband listens patiently and supportively to my tantrum. You think caregivers don't have teeny little lady-like tantrums from time to time? Ha!)

And then he speaks words of wisdom, soothing and kind, putting the whole endeavour into its right perspective:

"You succeed with this child every time you reach the end of the day and the child is still alive."

He's so wise.

going public

2005-12-04T13:58:00.000-05:00

Two stories about Henry.

One: When Henry was two and a half or so, Wade took him to storytime at our favorite local bookstore. It just happened that this was a special Maisy storytime, which included an adult dressed as Maisy. We love Maisy at our house, and had read--and memorized!--every book included in the storytime. Henry was enthralled, but unlike the other children, who sat nicely in their chairs and listened to the stories, he kept jumping up to pet Maisy and say, 'Is this your nose? These are your whiskers!' and to ask questions, like 'Why wasn't there any food at your house when Charley came to play?' One of the store employees gave Henry a tiny stuffed Maisy, and told Wade that he was the 'most enthusiastic child' they had ever had at storytime.

Two: Last winter, on a day that my younger child was in school, Henry and I went to visit my husband at work. Wade's boss has two beautiful tanks of saltwater fish in the office, and Henry was dying to see them. So he loaded his 'notebook' (a small hardback copy of Toot and Puddle: You Are My Sunshine) and the cardboard pencil from his Little Red Toolbox book into his backpack and we set off to see Daddy. When we got to Wade's office, Henry took out his backpack and whipped out his notebook and pencil, so he could take notes about the seahorses. People in Wade's office still talk about this.

It is impossible to spend any time around Henry and not see that he is quirky; people are forever commenting on his eccentricites. As it turns out, though, there is quirky and there is quirky, and Henry is so very quirky that he is diagnosable. And while the diagnosis has been a good thing, for Henry and for our family, we can see ways in which the label could be a bad thing, both for Henry and for our family.

My husband and I have talked (a lot) over the past six months about who should and should not be told about the diagnosis (and, more recently, about the medication). In the end, we have told almost no one; our parents, my brother, a few friends. For the most part, the people we see and interact with most often have no idea that Henry is anything but quirky. They don't know about the medication or the testing or the therapy. Wade has argued, all along, that we owe it to Henry to avoid the label, because the label will color the way people see him. I know that he is right and I agree with him and I think we've done the right thing in NOT telling people. At the same time, though, it is hard for me to slog through the days of medication and therapy and doctor's appointments and tantrums and non-stop talking essentially alone.

What I have done, in the end, is write about it. And, yes, I am aware of the irony of talking publicly about how we are not talking publicly about Henry's diagnosis. But I am not sure how else to protect my son's privacy AND my own sanity. So my question is this: how do you talk to people about your challenging child? Who do you talk to? How do you balance your child's interest and your own?

Welcome to Holland

2005-12-02T16:27:00.000-05:00

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It’s like this:

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean, Holland? I’m signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plans. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

From the Other Side

2005-12-02T07:25:00.000-05:00

"Hello, Marta, this is Mary... No, no Zoe's just fine. We were at the park all morning, she had a good lunch, and now she's having her nap. There are just a couple of things I'd like to chat with you about, and I was wondering when would be a good time to meet?"

At this point, Marta the mommy knows something's up. She's almost certainly fearing bad news of some sort - I'm quitting daycare and Zoe will be out on the street, Zoe has done something awful, or mom or dad has in some way offended me. All her mother instincts are on full alert, and her mommy guilt is poised to attack. Attack her and me both.

That mommy guilt thing: hits 95% of mothers, and about 3% of fathers. As a daycare provider, I have a love-hate relationship with it. Mommy guilt is that marvellous thing that ensures that when mom has a day off work, she almost always spends it with her child. I hear mom has a day off coming, and I know that will likely be a light day at work for me. I hear dad has a day off coming, and I know it won't likely change my work day one iota. Not even a late drop-off or an early pick-up. For dad, a day off is almost always an opportunity for me-time; for mom, it's almost always an opportunity for mom-and-tot bonding, at least in the preschool years.

More often, though, mommy guilt is a damned nuisance for both of us. In this case, mommy guilt can cause a woman to simply not hear a thing I say, or to hear it through the screen of the screaming guilt.

I say, "She's making the adjustment to daycare steadily, it's just happening very slowly."

Mom hears, "Your child is slow."

I say, "She appears to be a child who needs a lot of reassurance."

Mom hears, "She's a whiny clinger, and Mary really resents her."

I say, "She's extraordinarily sensitive to stimulation, far more than most children."

Mom hears, "There's something WRONG with my BABY and it's MY FAULT!" At which point, mom's faculties shut down for a few minutes, and anything further I say is lost in the internal turmoil.

Where is dad in all this? Not burdened to the same degree by parental guilt, dad is probably managing to hear much of what is said. Occasionally the ego messes with his hearing. His reaction, on hearing the suggestion that his child may be less than perfect, can be to get defensive/aggressive, challenging my experience, my capability of making these kinds of observations of his child. However, dads often have a smidge more objectivity about their child than mom, and may be saying, privately, "Yeah, I was kind of wondering about that." Usually when he hears the game plan, the dad is on side: a constructive reponse to the issue is greatly reassuring. As long as he has something he can do, dad doesn't generally waste a lot of time worrying about whether this was his fault.

Mom, too, may have been kind of wondering about that, but she has probably been trying desperately to fix it, because of course it must stem from how she's been mothering that child, and the fact that someone else has noticed, the fact that she hasn't been able to "fix" her child, proves that she is, indeed, a Bad Mother.

Parents, especially parents of one child, tend to believe that their child is who and what s/he is entirely through their parenting. This just isn't so. Your genes have combined to make this new person, but your child is a separate entity. This child is a person in his own right, with his/her own character, which is not wholly a result of anything the parents have or have not done. It's just not. Parenting is a factor, of course, but only a factor. Try telling that to most parents of one child, though.

A second child brings a welcome relief from this burden, when you realize you're doing pretty much the same thing with this one as you did with the first - and he's so different!

Years of working with parents has taught me that my first and most critical task is to assure the parents - mom in particular - that they are great parents, that they have been doing a fabulous job, that the child they have nurtured so well for these years is a child whose quirks have brought out the very best in her parents.

And, given that this is the situation, how will we as a team, help this child?

Because our goal is to bring out the very best in your child. Our goal is not to make your child "like everyone else". What does that look like, anyway? And would you want it in your home? Okay, maybe some days... but really, what you want is your child, your child happy and secure. Our goal is to help your child find her way through the world with a minimum of pain and a maximum of joy. Our goal is to help your child find herself.

And you are, too, a good mom.

today I taught my son to play chess

2005-12-01T22:09:00.000-05:00

Henry is five and a half. Six months ago, on his birthday, he was diagnosed with ADHD. It seems funny to say it that way, as though somehow on the day he turned five he became a Wild Thing and we sought help and voila! Problem solved! Which is not how it happened at all. Six months ago, we sat on the beautiful velvet sofa in the psychologist's office and listened as she talked through several months of observation and testing, and what seemed like hundreds of pages of questionnaires that my husband and I and Henry's preschool teachers had painstakingly filled out. Nothing she said was new to us; we were familiar with every behavior she described. What we had been missing, until that moment, was the external confirmation that something was not right. And now we had it.

The diagnosis was, for the most part, a relief. I had always known that Henry wasn't like other children; he was more energetic and high-strung than his peers. As a baby, he would sit in the bouncy seat and kick his legs until the entire seat rocked and his butt touched the floor. He took his first unassisted steps on a Sunday, Father's Day; five days later, he was running from one end of our house to the other. He refused to hold hands and would run out into parking lots or race away in shopping malls. When he turned two, he knew fourteen words; six weeks later, when our second son was born, he was talking non-stop, in complete, complicated sentences. After he started to talk, he began memorizing books and would recite them, whole texts, things like Henry Hikes to Fitchburg and Katie and the Sunflowers. That same summer, he developed an intense fascination with our lawn mowing equipment (mowers, leaf blowers, weed eaters). Henry would stalk the man who mowed for us around our house, narrating his every move. He would beg us to drive him through the neighborhood 'to look for guys mowing.' He would insist that his playdates play 'lawn guy' with him. This lasted until he was four.

I read about autism and Asperger's Syndrome and ADHD. I told my husband, 'He can't have sugar. No more juice! No more cookies!' I had lists of places I couldn't take him: any place with an escalator, for example, or a local bookstore with ladders attached to the shelves. I knew, I just knew that it wasn't supposed to be like this. But when I would mention it to my mother-in-law or my parents or my friends, they would all say, kindly and gently, 'He's fine!' or 'Boys are like that!' or 'Relax!' Even my husband was skeptical of some of my theories about Henry. 'Lots of kids are odd,' he would say. 'I'm sure he's fine.' And I would think, my god, they're right, I'm a terrible mother.

So when the psychologist said, 'Henry is a classic ADHD case,' I was relieved. For the first time in five years, I didn't feel like a terrible parent. Henry really wasn't like other kids, and the things that work for other kids--strategies for discipline and play and sleep and food--were not going to work for him. So we started over with new strategies for everything. We started intensive behavior therapy, which required that I be with Henry ALL THE TIME to help him negotiate the world. I spent the summer saying, 'Look at my face when you talk to me! Walk in the house! Take five deep breaths!'). By Labor Day, I was exhausted and was beginng to feel, again, like a terrible mother.

In the weeks after Henry was diagnosed, I read and read about how some highly gifted children, particularly boys, particularly at Henry's age, are misdiagnosed with ADHD. And in some small part of my heart, I hoped that this might be what we were facing. These children are hyper and distractable simply because they are so smart. If we can challenge him, I thought, then that will take care of it! We took him out of his Montessori preschool and put him in a smaller, more structured school. I bought hundreds of dollars worth of art supplies--paper, crayons, paint, markers, Playdough--and had Craft Time every day. We started reading more challenging books to him--the Magic Treehouse series, and Harry Potter. We encouraged him to make up stories, and we would type them for him. Wade would illustrate them. But he still couldn't sit still, couldn't have a coherent conversation, couldn't focus long enough to learn to spell his last name. He still had catastrophic meltdowns over what seemed like nothing. And then the director of his school called and said, 'We have to do something about Henry.' And once again, I felt like a terrible mother, because I had done too little or too much of the wrong thing.

Four weeks ago, we put Henry on medication. And in the last four weeks, he has begun to have complete conversations. He has started to draw detailed pictures of Quiddich matches. And today we played chess for two hours. Right now, in this moment, I don't feel like a terrible parent; I feel like the parent of a very smart little boy who spent fifteen minutes this afternoon memorizing the pattern for placing the chess pieces on the board, repeating it over and over, placing and replacing the pieces until he had it right (Rook, Knight, Bishop, Queen, King, Bishop, Knight, Rook). And no, I don't think this is a 'normal' Thursday in most homes, but it is closer to normal than we have ever been. And I think that's all we can hope for just now.

Introducing Christopher

2005-12-01T12:29:00.000-05:00

Christopher, my eight-year-old son, is lying on the couch, sighing loudly. He's in a funk because his sister won't play with him. He's begged, he's pleaded, he's thrown a blanket over her head and pushed her and still she won't play with him. If the roles were reversed, Sophie (five) would pout for a moment and then she would find something else to do. I've seen kids Christopher's age deal with minor disappointment in much the same way as Sophie. They shrug it off and go on with life.

Christopher has difficulty with disappointment in just about any form. Sister won't play with me? I'll slam doors and throw things and shove her. Can't finish the task I started? I'll slam doors and throw things and scream. My friend can't come over? I'll slam doors and throw things and glare at you, Mom, because clearly it's your fault.

His behavior has become markedly better in the last couple of years. But when he was about four, we (Christopher, Sophie, and I) had an experience that shook me to my core. Christopher's friend was over and it was time for her to leave. No one was being punished and she wasn't being sent home early. When I told them both that it was time for her to leave, Christopher stood up and pushed me. When I gave his friend her shoes, he took one and threw it. I knew then that things were not likely to get much better, so I carried him to the baby-gated-and-proofed kitchen, set him on the other side, retrieved Sophie (who was about one at the time), and helped the friend put on her shoes. During this time, Christopher raged at me. He screamed loudly enough to wake the dead. He shook that gate with all his might, and he was transformed into this creature that frightened me. I explained to his friend that his behavior wasn't her fault and that he'd be fine in a little while. When I opened the door for her, I went out with her and with Sophie and I shut the door behind me. I could still hear him raging. It took about ten minutes for him to calm down enough that I felt I could go back in. I was honestly afraid that he'd hurt me or Sophie. I went back in and found him sobbing on the floor, forehead pressed to the vinyl. He looked up at me and said, "I just wanted her to stay, Mommy."

That's when I knew something wasn't "right" with my child. The preschool teachers had been asking certain questions that I was kind of dismissing. But when I dropped him off the next day, I took his teacher aside and explained to her what had happened. She looked at me and said, "We need to find out what's going on with him."

Thus began our foray into developmental disabilities and diagnoses and psychologists. He was first diagnosed with Sensory Integration Dysfunction (sensory seeking/auditory avoidance, with motor planning, vestibular, and muscle control problems) and then, most recently, Attention Deficit Hyperactivity Disorder. He's also incredibly bright (as most of these children are), and has issues with impulse control. Of course, in the journey of filling out questionnaires and participating in interviews, hindsight is 20/20. He was challenging from the get-go. But since he was child number one, we really didn't know that there was challenging and there was challenging.

But he's also really funny, and he's insightful, and he can be so loving and gentle at times.

It's been thirty minutes since I started this entry. He is still begging his sister to play with him and now he's being passive-aggressive with her. He won't read the title of the cartoon they're watching.

It's all in a day's work here.

Why "In The Trenches"?

2005-11-29T10:43:00.000-05:00

I had this idea. I was reading a post by Susan wherein she was lambasting a new magazine, Cookie. It's the typical parenting magazine (in that it makes those of us who don't have typical children feel like failures) with a twist (in that it suggested throwing a cocktail party for your baby's first birthday). I agreed with everything she wrote, and I commented that I'd like to start my own parenting magazine for those of us with challenging children in our lives.

Of course, I can't start my own magazine. I mean, I don't even own a printing press. But I can start a blog! I casually suggested the idea to my husband and he quite liked it. So here we are.

Why "In The Trenches"? It often feels like warfare, parenting a challenging child. You do your battles daily, usually several times a day, and the ends are nothing like the ends of battles with typical children. We're in the trenches every single day. It's hard for us. It's hard and it sucks and it's not fair and it's not like parenting the typical child. But it can also be really fun and amazing and we learn something about ourselves nearly every day.

I want this to be a place where parents of challenging children can come to commiserate and get ideas. I want this to be a place where people who have challenging children in their lives (aunts, uncles, daycare providers, teachers, etc.) can come to share stories, to learn things, and yes, to vent, because those of us who love challenging children need to vent, without judgment. I also want this to be a place where good days can be celebrated. Good days, for us, are days where the child is still whole and the caregiver hasn't left with the credit cards and a full tank of gas. Good days are days where your child finishes a test in the allotted time, or puts her face in the water during swimming lessons without working herself up into hysterics. Good days for us are often bad days for the parents of typical children.

Welcome. Grab a drink, get comfortable, and share the ride with us.