Everyone Can Use a Helping Hand

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

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

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

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

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:

1. 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!;


2. 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
;

3. 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;


4. 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

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

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.