September 2009

Who’s Gonna Ride Your Wild Horses?

by Tim on September 29, 2009

For a long time, I’ve been excited about trying hippotherapy with the J-Man, particularly since the horse farm field trip that originally got my hopes up was canceled due to weather last spring. After many months of waiting, our class was going again! Just our luck, it rained the morning of our field trip, which brought forth a long string of flowery language from me as I watched the weather report. But when the teacher told us at school that this farm has a covered riding area, I was all like, It’s on!

I was born in Kentucky, where you grow up at least in the vicinity of horses regardless of where you live or what you do. I’ve been on a horse like once, but I’ve found just being around horses to be calming. Not something I can easily explain. But with all the wonderful experiences I’ve read about or heard people having with therapeutic horseback riding, I have been looking forward to seeing how the J-Man would feel about it.

I confess that a lot of what I brought to this field trip was my own desire to find something the J-Man really loves, which brings with it a certain amount of selfish emotional baggage. I couldn’t help but have in my mind how I wanted his first adventure on a horse to go. It’s really not fair to him to hope for some revelatory experience every time we go do something new together, but I think it’s a natural part of our psyches as parents to feel like that. In a life filled with challenges, we want to help them discover what they love most and then go for it.

I’d call our first horse adventure a pretty good one – not revelatory – and one that we plan to do again. The farm has a good and caring vibe to it, and you can’t help but appreciate what all they do for special needs kids. They have a free event one Saturday a month where families with special needs kids – and siblings too – can come and ride horses and enjoy the farm. The horses almost seem to exude calm from every muscle, or at least that’s what it felt like to me.

The covered riding area was perfect for the rainy, gloomy day outside. Each of the kids took turns riding the horses – with varying degrees of excitement about it. I took the J-Man over to look at the horse he’d be riding (a beautiful, brown and black horse named Max) so he could get used to him while still in my arms. He was noticeably calm while we did this, even petting the horse – with a little nudging from me – without any noise or complaint or any real hesitation. His touch on the horse was slow, caring, and gentle. I would have given anything to know what he was feeling as he did that.

Max is not a very tall horse, which came in very handy. I didn’t measure him, but I’d guess maybe 5 feet and a bit. We chose him both for his calm and his smaller stature because we knew we’d be walking alongside the horse and holding the J-Man up there. He wouldn’t have anything to do with the helmet, so we just flanked him with arms and people.

When it came his turn to get on, he fought it some and protested, but I’ve certainly seen him fight things a whole lot more than that. The first lap around was primarily us trying to reassure him, help him calm down, and for us to not get stepped on by the horse. Just to throw in some humor of his own, Max deftly avoided a pile of manure by changing lanes and nearly pulling me into said pile while I was trying to sing the ‘Calm Down Song’ to the J-Man. (Thanks, Max.)

The second lap was a much different story. We felt his body begin to relax later in that first lap. All the good sensory gifts that horses can give were working their magic. On the second time around, the protests stopped, his face became thoughtful and serene, his back started to ease down into the saddle, and he held on to the pommel of the saddle instead of my arm. One by one, I could feel his little muscles unwind. Meanwhile, my heart was about to jump out of my chest with happiness.

You could tell he was ready to get off by the end of his two times around, and I took him down and gave him the biggest hug I could. And all the parents cheered for him because they know new and unknown things are so hard for him.

We tempted fate again by putting him on Max one more time a few minutes later. I think we didn’t allow the J-Man the necessary decompression time after a big sensory event as he was pretty upset the whole lap around. (We just did one lap this second time.) In hindsight, that was a lot to ask him to do in that time span, but there’s no way to know unless you try.

But, he did it. He stayed on the horse. He began to overcome those fears. He tried something very new and different. Getting on an animal that’s many, many times bigger than you – calm or not – is something I know a lot of neurotypical kids and parents would be too frightened to do themselves. And for that one lap around, he found something that right now only he really knows. But whatever it was, it was clear enough to us to know that we need to return and give it another go.

We plan to go again next month when they have their special Saturday event. Usually with him, the first time of anything stressful is always very difficult, but each successive time gets better. Given the meltdowns we can get just from moving his car seat to a different car, the fact that he didn’t have anywhere near that kind of reaction to the horse I think means something. What it means, though, only time and experience will tell.

For those of us whose kids can’t easily communicate what they love and what they don’t like, how they feel in new situations, or how they experience an event like this, this is largely what we have to do. We look for experiences that are geared to be affirming to our children and their needs, we go give it a try, and we see what happens.

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Blast Off!

by Mary on September 23, 2009

During the last 2 weeks, the J-man has shifted into high gear. Suddenly, he can do some of the movements to the morning song at school. They’ve been singing this SAME SONG since, well, forever, and something just clicked. Now he is starting to follow along some of the movements with a slight physical cue (touch to his hand) or even a verbal cue (pat your head). He has been playing a game with one of his teachers, Mrs. Cindy. We call it “Pat, pat, pat, pat” at home, because according to what the J-man does at home, it starts with patting the legs 4 times, then clapping 4 times, then patting the legs 4 times, then doing Wonder Twins fists with the other person and bringing both arms up to say Blast Off! He is so proud of himself when he does that, and of course, we are proud of him too.

Think about how much motor planning that little game takes. Patting your thighs: make sure the hands are open, make sure both hands are doing the same thing, actually hitting the thighs but not too hard, and doing it 4 times. Then, SHIFTING to open-hand clapping (the J-man normally claps his fists but not in this game): hands open, arms moving in such a way at the same time to clap them together while SAYING “clap, clap, clap, clap.” Shift again, back to patting thighs. Then, put both fists out to touch the other person’s fists, bringing both arms up at the same time (still touching fists) AND saying “Blast Off” (or the J-man’s approximation of those words).

Now, try to imagine programming a robot to do those things. I know, you’re probably not a programmer, but think about all those steps, and how carefully each would have to be coded. Think about the pages of code that would take. Now imagine that each time something is repeated, you can’t just copy/paste the same code – you have to recreate it, and you don’t have your old code there in front of you, and in fact have trouble even remembering how you came up with that code.

That, I think, is how the J-man has to do it. He has to carefully think through EVERY SINGLE INDIVIDUAL MUSCLE MOVEMENT, big or small. He has to put all those single individual muscle movements together, but because of his motor planning issues, he has to re-think about how exactly one makes that muscle move. For everything. Every time.

I liken his motor planning issues to my inability to dance. I’m not talking about those people who say, “I can’t dance” and then go out and while not the best dancers, can at least do the Clap and Step of every junior high school dance. I mean, I have trouble watching someone do a step, and then repeating that step, because I have to seriously consider what FOOT they started on. Add hands, or any hip shaking whatsoever, and I’m lost. (I was an absolute riot in aerobics class the 2 times I took it.)

So imagine if my whole life was having to dance every day. I could definitely spend an entire year absolutely not getting a dance. I had to learn a dance in the summer before 10th grade, and I still remember it, because it took me having the instructor come over and actually MOVE MY FEET INTO POSITION as she broke down every step. I cried over it, because I was so bad. I can’t imagine doing that every day. It’s been over 20 years, and I still remember how hard that was for me. I wasn’t happy when I learned it enough to stand in the very back and not really let anyone see me, but I was relieved. I wasn’t proud.

And think… my kid does that every day of his life for every move he makes. And he smiles during it. And is incredibly proud of himself.

BLAST OFF indeed.

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The Color Purple

by Tim on September 19, 2009

Given the struggle things have been lately, I’ve needed as much inspiration as I could find to help refill my bucket. I have a half a zillion autism parents blogs bookmarked in my RSS reader, and I am woefully behind on them. But that’s one of the places I often go to find words I need to hear.

With so many of you, we read your blogs for both inspiration and realism, hope in things not yet seen and practical ways of dealing with what we see right in front of us. You have helped make us better parents and better people.

I’ve been thinking about creating a separate blog where the posts are primarily links to the great stuff we find on your blogs. You all write such amazing things!

Which brings us to such a post for today. MOM – Not Otherwise Specified (MOM-NOS for short) wrote “The purplest” , the story of her son’s 10th birthday. No commentary needed, which would detract from its beauty and perfection anyway. Just go read it. Cry, cheer, and let it make your day like it did mine.

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I wish I had some brief, non-whiny-ass way of talking about this, but it’s just going to be what it is. This is a subject many of us avoid because we don’t want others to think we’re weak or talking negatively about our life as parents. But tonight I feel like being honest about it.

Someone once gave me the most appropriate term that I think exists for how I’ve felt the last few days.

I am bone-weary.

It’s a good thing I recently read an absolutely brilliant blog post by Rachel Coleman (aka Rachel of Signing Time!, also aka J-Man’s Secret Crush) called Strong Enough to be Your Mom. I highly recommend you go and read her moving story.

The day after the J-Man’s annual pediatrician’s visit about two weeks ago – where I had to carry him around for an hour and do some awkward holds during the exam – I started to feel a building pain in my low back. And it just got worse and worse. Within hours of when it started, it got to where I couldn’t bend more than a few degrees from vertical in any direction. I couldn’t sit and I certainly couldn’t sleep. I took some ‘real’ pain pills (which I only do when it’s really, really bad), and I might as well have been eating candy.

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by Tim on September 11, 2009

Many, many years ago in elementary school, my teacher gave us the assignment of asking our parents whether they remember exactly where they were and what they were doing when President Kennedy was assassinated.

She made a little wager with us. “Anyone want to guess how many of your parents will remember?” Someone said something like, “My mom can’t even remember to pack my lunch,” which got laughs and summed up our opinion pretty well. I don’t think any of us believed our parents could possibly remember it in any real detail. My teacher simply responded, “All of them will.” We all thought she was crazy.

I remember all this because of the amazement I felt the next day – in a way I’d never remotely experienced before – when we discovered one by one in the class that she was right. I still haven’t forgotten the impact this had on me.

As elementary school children in an era still without momentous single events – though I do remember watching the first Space Shuttle go up on TV at school with quite a lot of detail – we lacked any context for understanding how someone could remember something in such perfect detail for so long.

I can narrate almost my entire day of Sept. 11, 2001 in enough detail to talk about it for the better part of an hour. Compared to many others, it’s not terribly interesting or compelling, but it’s how I carry my memories of that day; it’s how I have chosen to never forget.

I’m experiencing a very strange feeling today. I wonder whether the J-Man will ever have that assignment in school, to ask me someday what I remember of that unspeakably awful Tuesday. Will he too be amazed at all the details I will carry with me for the rest of my life?

Then another question popped into my head, Will he appreciate the emotions and gravity and tragedy of that day enough for its significance to register to him? Is that even a fair question? Is any of this any different for an autistic child vs. those who aren’t? Aren’t all children just like I was back in elementary school, unbelieving that our clueless parents could remember such a thing, especially because we’ve become the parents who regularly lose car keys and everything else?

For whatever reasons, remembering life-changing events and people and places and stories – and all the feelings around them, whether joyous or tragic – is an important part of who I am. I have a hard time understanding people who aren’t like this. Soaking in and processing the myriad emotions and interactions of others in most any situation is almost like a reflex to me. (Understanding my own is a far different story.) It seems likely that the J-Man will process events and defining experiences like these quite differently.

This is neither good nor bad, of course. Perhaps it’s that today I’m in touch with how much I don’t understand about how he sees and makes sense of the world. That may sound obvious, but the breadth and depth of my ignorance seems more palpable by the day. Last night I found myself desperate to figure out what’s most important to him. I know that’s a whole lot – and probably something impossible – to ask of a parent and a four-year-old.

Lately I’ve been doing something I very rarely do – thinking about what school will be like for him down the road, and more broadly, what the future holds for him. And just this second as I write this sentence, I figured out why.

I desperately want to be able to share experiences with him. I want to be able to share in something with him and us talk about it and each of us understand and appreciate what the other sees and feels about it. I want to be able to sit with him and say, “Do you remember that time we…” and have us both draw on common memories and laugh.

As he helps me remember all the essential parts of who I am and what matters in life, my hope is that I remember things that are important for him and help him do the same. Maybe this is how we build our story together and keep moving on, regardless of what has happened – or may yet happen – to us.

For today, we remember everyone whose lives were irrevocably changed on that terrible day. We give thanks for heroes and remember all who were lost and those who love them.

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Just People

by Mary on September 10, 2009

I’ve been thinking lately about the Just People. And the Should People. And especially the Should Just People.

You know them. You may have even been them. I sure was!

“Why don’t you JUST make him do it?”
“You SHOULD go GFCF because it helps all kids with autism.”
“You SHOULD JUST ignore him when he does things like that because he’s only pretending that it bothers him.”

There are the My Child People, the In My Day People, and the All Kids People.

“MY CHILD would never be allowed to act like that.”
“Well, IN MY DAY, parents actually parented instead of this “make sure his needs are met” stuff they do now.”
and my favorite:
“ALL KIDS are (insert some small issue compared to all the other issues) at this age so why do you think it’s any different for you?”

Well, I’ll tell you what…

If you JUST listened to parents or to people with autism, you might understand better. You SHOULD do some research on your own and not believe everything Jenny McCarthy says. You SHOULD JUST ignore people who go on TV and make blanket statements about people with autism. MY CHILD is acting in a way that makes sense to him at this point. IN MY DAY, we parent by making sure his needs are met. ALL KIDS are special in their own ways, no matter what you think.

Maybe if we all remembered all of that, we would in fact realize that people with autism? Are Just People too.

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Recognizing Your Own

September 4, 2009

Wednesday we were at the doctor’s office for the J-man’s 4-year check up. (He’s doing well, thanks!) While we were waiting, we watched a drama unfold outside, and it made my heart hurt. A boy, perhaps 11 years old, was fighting with all he could muster to NOT come into the doctor’s office. He broke […]

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Even More Annual Celebrations – One-Year School Anniversary!

September 3, 2009

Today marks the first anniversary of the J-Man starting school. His first year in the Pre-K autism class at the nearby elementary school has been better than we even dreamed possible. We are thankful beyond words for all that his teachers and therapists have done with and for him, for their amazing skills and creativity, […]

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