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Preschool

Like a candle

by Mary on December 5, 2009

For the past few days, we have been schedule freaks. OK, everyone except Dale Jr. He does what he does, when he wants to do it! For everything else, we have pre-planned, pre-made where available, and pre-decided, all before the kids get out of bed in the morning, or after they go to sleep at night.

The J-man’s teacher (hi Mrs. Jennifer!) and his OT (hi Mrs. Jamie!) came over on Tuesday afternoon, and had some good, solid, concrete suggestions about his current sensory issues. The suggestion that we all thought would be the best was to use a picture schedule at home like they do at school. I mean, we already had what we thought of as “routines” but those routines seemed to leave a lot of downtime, and downtime is NOT what the J-man needs right now.

So, man, have we kept him on track! And it seems to have helped, to a certain extent. We’ve still had the “stop, drop, and flop” happen a few times but there has been less stimming and random screeching. WAY less putting hands over ears. I am, however, tired of Pinky Dinky Doo, since we can only have the TV on during the scheduled TV time now, and that’s all the J-man has wanted to watch. Thankfully, he asked for Rachel today. YAY for Signing Time!

We’ve added an enormous amount of brushing. It seems to calm the J-man immensely, and he really likes it. I think if he could request it, he would. In fact, sometimes when we’re done with the “brushing and squishing” routine, he hands the brush back to get whoever is doing it to start again – and so we do.

We’ve changed our eating style – we used to eat in the living room, on tray tables, watching the evening news. My mother will be pleased to know that we now eat at the table, together. This means I have absolutely no idea what’s going on in the world right now, since, as I mentioned, if the TV is on, it’s Pinky Dinky Doo. I don’t stay up late enough to watch the 11 PM news. Tim is up that late, but it’s because he’s working. With all of the hands-on parenting, he’s not really getting any work done during the evening the way he used to. Yeah, our schedule still has some kinks to work out (like, when to MAKE DINNER for the parents) but I’m hoping we figure something out soon because otherwise, Tim just doesn’t sleep, and that’s bad.

Last night, it all came together because Dale Jr took a nap right about the time I needed to put dinner in the oven. The J-man and Tim were outside, swinging, and I scurried around getting everything ready. Right before dinner was ready, Dale Jr woke up, so while I fed him, Tim got dinner out of the oven, then I finished everything off and we sat at the table. The J-man finished his nuggets and applesauce quickly, then asked for “sticks.” When I gave him the container of sticks, Dale Jr was starting to get fussy sitting in his high chair.

Tim and I have given up talking during dinner because we’re shoving food in so fast, but we weren’t anywhere near done at that point. The J-man calmly picked up his container of sticks, walked around the table, sat down at the chair beside Dale Jr’s high chair… and stayed there, looking at him while eating. Since Dale Jr ADORES his big brother, that was enough to make him happy, at least for long enough for us to finish eating. The J-man saw someone in trouble, thought through how he could make it better, and did so.

That action brightened our day. It was just a little light, a match struck, but it stayed lit long enough to light a candle. I look forward to many more candles burning brightly.

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Trying to Get Perspective

by Tim on November 29, 2009

These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.

I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.

It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)

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In Dreams Asleep

by Tim on November 17, 2009

I wrote in “In Dreams Awake” about a dream I had that came true not long ago. Now I wish to write about another dream I had a few weeks back. It’s rare for me to remember dreams at all, and nearly unheard of for me to remember them in this much detail. So here is a dream that has not come true, at least not yet.

To unpathed waters, undreamed shores. – William Shakespeare

Dreams are illustrations… from the book your soul is writing about you. – Marsha Norman

I dreamed Mary and I were sitting in folding metal chairs – the gray and somewhat wobbly kind you see by the hundreds in church fellowship halls and outdoor events everywhere. We looked down and grass began to appear under us. The grass became mottled by dirt – bare places in the expanding grass – and was made uneven by tree roots slowly emerging from the ground.

Around us, buildings slowly began to reveal themselves, forming the boundaries of what became an enormous quad, a great lawn also ringed and permeated by oaks and magnolias. Then a sea of chairs coalesced all throughout the quad. Soon they were filled with people – an endless variety of families it seemed – from every generation and from every walk of life you could imagine, but none of whom we knew. They formed fully into being, sitting in perfect geometric arcs around the quad like a great parabola with a stage as its focal point.

A large, square formation of neat rows of chairs filled the space between the arcs and the stage, filled with students in their navy gowns, mortarboards, and tassels. Graduation? But for whom? I realized the ceremony was already well underway. Some students were lined up on the lawn to the right of the stage, waiting for their turn to cross the stage. One student was walking away from the stairs on the left side of the stage, holding her diploma in her hand, waving it triumphantly to her family. I could finally see the stage clearly, and it was filled with the usual dignitaries – principal, administration, teachers.

I still didn’t know for what person we were there. We have numerous nieces and nephews, friends working on higher degrees, or was this the past? I didn’t have a clue.

Then I noticed something very odd. No more names were being read. The ceremony had just stopped. The middle-aged man at the podium did not call out the next name. It was like everyone was holding their breath. Instead of impatience, I could feel anticipation swelling through the formation of students. You could see heads turning throughout the crowd. Many of them craned their necks up and around; some stood up to get a better look. The crowd knew something important was about to happen – everyone, apparently, except us.

For the longest time, nothing seemed to happen. But everywhere we looked, every single person was smiling. Many had tears in their eyes. All of them radiated happiness, drinking all this in like people savoring history. Then I realized that all of those jubilant faces were now looking at us.

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All the Good Things

by Tim on October 2, 2009

My health has just been for crap lately, so crawling out from under my self-pity and general groaning – which I’m not good at in general – has required some serious conscious effort on my part.

Thankfully, the J-Man has his ways of snapping me out of it with yet more astonishing new things he’s achieved lately. His last two weeks at school this quarter – which ended a week ago – were like a quantum leap forward for him. His progress at school has been extraordinary, and it seems like every day at home yet another new beam of light comes shining out from him.

As I noted one of today’s great achievements, I got to thinking about all his recent accomplishments and newly-developed skills. I decided to start trying to write them down so I could both celebrate them and snap myself out of my self-indulgent funk. So, here are a handful.

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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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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, for [...]

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It Takes a School Village to Make a Great IEP

August 27, 2009

After all the stress, frustration, and general drama around last year’s IEP process (our first), this year’s was the complete polar opposite. It is beyond description to have a team of caring, creative, smart teachers and therapists who have the best interests of your child at heart working with you.
I’m not saying last year’s team [...]

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