June 2008

Actually, he does!

by Mary on June 30, 2008

Today I heard the J-man count to 10! Yes, 1-7 were mostly “cuh-cuh” but when Tim got to 7 and the J-man said “ayyyy” and then Tim repeated “eight,” and the J-man said “niii” I just about wet myself.

Not that I knew this the other day when I was grousing about the whole incorrect minutes from our meeting with the county…

Maybe we should teach him to count in some other language where 1-7 don’t begin with letters he can’t say. Uncle Jason?

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Action Photos – Working at His Desk

by Tim on June 29, 2008

Here are a couple of pictures of the J-Man working at his desk in his home classroom. These originally were just going to be staged shots, but he actually sat there and worked the whole puzzle by himself, and without either of us sitting there keeping him from running away! That and he’s having fun!

He looks like such a big boy in these pictures. My God how the time flies.

That last picture is exactly what I’m talking about when I say seeing how proud he is of himself when he accomplishes something makes any stress we may feel seem completely insignificant.

jman-desk1.jpg
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We met with the county people yesterday to see if the J-man would “qualify” for the school-system-run preschool. We had to take the J-man with us in an un-napped state, because the ONLY slot they had available was at 3 PM. You know, right in the middle of rest time. Good times.

The people were nice and all, and they think the J-man is adorable (because he is) but seriously, the woman who took minutes? Has no business ever writing again. And she’s a teacher. Also, the coordinator may want to re-think her strategy of “sharing” her monitor with me because obviously “sharing” is “inconceivable.” (“You keep using that word. I do not think it means what you think it means.”) Sharing does not mean briefly flashing the screen towards me, and then choosing what you think is best without consulting me.

Today I had to send the coordinator an email giving her all the errors in the reports and minutes. She was NOT pleased with me, and kept insisting that something had happened yesterday, when it obviously had not. Really, why would I tell you that my child knows his numbers, when he doesn’t? It seems bizarre, since from what I understand, parents should make their child’s issues look as significant as possible to get the kind of support actually needed. *sigh* We went back and forth, and finally she said she would just attach my corrections to the bottom of the report (where they are oh so likely to be read *eyes rolling wildly*).

Not exactly the way I wanted to start our relationship.

In completely unrelated news, my boss’s wife is in the hospital today being induced with their newest child. Last I heard, he was tracking the contractions via a spreadsheet. I seriously work for a geek. But a nice geek.

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A New Block-Carrying World Record

by Tim on June 26, 2008

J-Man has rarely been one to get fixated on an object and carry it everywhere. Glo-Worm and the music-playing caterpillar used to go with us in the car and to some degree around the house. The music calmed him down and made life better for everyone. Even then, they weren’t with him all day.

Yesterday during speech therapy, he was impressing the therapist with his ability to point to a particular letter on a block even when presented with several blocks to choose from. For good measure, he often said the letter. It’s hard to describe what a quantum leap forward this is for him. If you present him objects (ball, cow, book, for example) and ask him to point to the cow, it’s rare for him to do it. Give him a pile of letter flash cards and say, “point to the ‘A’,” he’ll point and get it right about 90+% of the time. I’ve got no idea either. The speech therapist was floored.

He particularly likes ‘K’ since it’s the one sound he’s been able to make consistently. Oddly enough, it’s one of the hardest sounds to make. One of the hardest for him is that B/P type sound – he almost never can – which is apparently about the easiest sound to make. It comes out this curious, guttural, glottal, whatever sound. In any case, he found the ‘K’ block and held on to it the whole session. He also decided he liked the ‘C’ block and held it in the other hand. So, with a block in each hand, he would ‘point’ his fist at whatever she was asking him to.

He held on to them throughout the therapy, which started about 9:00AM. He then kept carrying them… and carrying them… We went to Target about 10:30, and he carried them to the car. He carried them into the store, and in the shopping cart, and back out to the car, and back home, and climbing up and down the steps. He held on to them through lunch (both in one hand), eating with the other hand. We managed to pry them from his hands (to much unhappiness) while he ‘napped’ (ha!). When he got up, he grabbed the blocks again and carried them around through the whole afternoon and dinner and up to the bathtub, where we had to pry them out again (to much more unhappiness).

Finally I just hid them. Today, he hasn’t looked for them.

I have no idea why, but yesterday was Block Day. I’ve never seen him carry something around for the better part of 10 hours. Go figure.

Who said all this wasn’t interesting?

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If you live in North Carolina (like we do), there’s a fantastic resource called Generations-Tadpole that a few people and a couple of therapists mentioned to me. We haven’t used it yet, but I’m sure we will.

The best way I can think of to describe them is like Netflix for assistive and augmentative technology. If you live in North Carolina, you can borrow something out of the ‘library’ for a couple of weeks, try it out, and then return it. The best news – unless I’m missing something (and I asked around and looked on their site) – is that for NC residents it doesn’t cost you a thing, not even for shipping. Of course, you actually have to return things on time.

Obviously, one of the main issues with assistive technology in general is that there’s no easy way to try it out without spending tons of money on something and likely being stuck with it if it doesn’t work for your child. This stuff is way expensive (makes me think I’m in the wrong line of work) and not something you try out on a whim usually. Our local Early Intervention office has a lending library of their own, which we’re going to try to use before our time in EI runs out soon. From what I gather, it gets a lot harder to get loaners from the preschool system just because their inventory is always checked out. At least that’s apparently the case in our county.

Our primary interest is in ‘augmentative communication’, or ways to help J-Man better communicate with us and others. They also have a bunch of other resources such as learning and literacy aids, devices to assist with daily living, loads of educational CDs and DVDs, computer software for kids, and more learning toys than you can shake a stick at. There’s a bunch of other stuff too.

After reviewing Tadpole’s inventory, I noticed one issue that our developmental therapist gave us a heads-up on – augmentative communication devices often talk for the child through pre-recorded phrases assigned to the buttons, so partially-verbal kids whose verbal skills are improving (even if very slowly) may derive little or no real benefit from these devices.

If an older child with a very limited spoken vocabulary needed to ask certain kinds of questions that they couldn’t sign or communicate non-verbally, provide certain responses to questions also not easily communicated non-verbally, or generally needed to interact in some fashion independently of someone who could ‘translate’, I could see the real value in this. If a child got lost and needed to say “My Mommy’s name is Jane. Her phone number is 555-3333,” then a programmable device like this could really help. Since some of them can also be reprogrammed or significantly customized, they are quite adaptable to different situations.

But that brings us back to the original problem. J-Man can point to a picture for a handful of things (mostly food), and often say something that approximates the name of that item while he’s touching the picture. This really helps clarify what he wants. The pictures are a stepping stone to expanded speech. They do stand in for the speech itself sometimes, but it feels like the available technology is largely on a different path right now from where we are. While it would be entertaining to get more complex things from him than ‘cup’ (just waiting for a recorded version of “Daddy, you smell like a baboon’s butt.”), it seems like digitized phrases aren’t yet a part of the path we’re on at the moment.

That said, the yes/no switches might be worth playing around with. I’m willing to play 20 Questions with him if it helps better narrow down what he wants (and assuming he gets the point of it), but I’m uncertain about how well that fits into our current plan. It’s free for us to try, so we’ll play around with their inventory to see what we see.

I think a gap in the range of these devices comes on the lower-tech end. A more portable, configurable, extensible picture system – without all the programmable recordings – would be a real benefit to us. I know a simple, small photo album works for some kids, but J-Man doesn’t seem ready to flip through something. He needs to see all of his choices at once. Given what I’ve seen, I may have to sit down and actually design one that works for him. It’ll give me an excuse to go to Lowe’s if nothing else.

If anyone knows of other lending resources, feel free to comment or e-mail us!

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Assuming you have good relationships with them – which to a person we’ve had with all of ours – your child’s therapists become your friends; they leave and you mourn. They bring you the one blessing you want as much as anything. They help your child take the one step at a time they need in order to grow into the fullest expression of themselves that they can.

J-Man’s developmental therapist is moving away this week. Her last day is tomorrow. She’s worked with him for about 15 months now – almost half his life, and far longer than anyone else. When she started, he would become immediately frustrated and upset when you tried to get him to do most anything. Stacking two blocks together or putting a big plastic coin in an even bigger slot looked like asking him to climb Everest. Even being near an open container of Play-Doh would make him gag. Touching fingerpaint would make his little sensory system go into red alert. He had at best a handful of random, unclear words. If an activity took more than two seconds, he couldn’t sit still for it or complete it. It’s hard to realize that when we started working together, he also couldn’t walk on his own. And it would be some time before he did. He had only very recently started sleeping through the night at that point. We were worried, exhausted, and growing more distraught by the day. It was a very hard time.

I see how he still struggles, and every day I grapple at least some with keeping perspective and staying positive. With her leaving, it’s made me look back and see just how far he has come. She was there when we had no idea what was going on, she’s seen us through his autism diagnosis, and she’s given us the tools and resources to know where to go next. She’s given us a wealth of information on how to set up his new home classroom and a home program to complement everything else he’s doing. Over the span of the last few months, she’s poured out so much of what she knows into us. We’ve learned more than I imagined possible, and we have a plan. I hope I’ve been a good student.

She has given us something words cannot describe, but those of you who have been through this know exactly what it is.

In a couple of months, we’ll also say goodbye to his other preschool teachers and therapists as we move into the county school system. Her departure starts this season of transition and mourning that we won’t get to see these people every week who have meant so much to us. I’ll feel this way a lot over the summer as we keep saying goodbye. They have all been so wonderful to us. It’s impossible to adequately express our gratitude to them. They’ve kept us upbeat when we were struggling. They love every kid who walks in their doors and steadfastly refuse to give up on anybody. If they ever wonder how much their work matters in the grand scheme of things, they need only to ask people like me.

I’ve realized that this isn’t a sprint or race; it’s a marathon relay. It’s the kindness and commitment of these once-strangers who have seen us through this far. It is because of them that we have hope in the people we have not yet met and things that we have not yet seen.

Whether they are developmental, occupational, speech, physical, or another other kind of therapist, the ones who enter our lives and offer their hands, heads, and hearts to people like us are often unsung superheroes.

They are worth their weight in gold, and probably get paid their weight in recyclable plastic.

They are reimbursed for gas at about the same rate as pizza delivery people – except they can’t take tips.

They are energetic Macgyvers, making limitless supplies of therapy aids out of egg cartons and dollar-store junk. They don’t even need duct tape, though give them a laminator and they can rule the world.

They will stand on their heads if need be. They will come up with stuff that boggles the mind.

They see our son achieve his latest miracle, and they cry, too.

They’ve never grown up, and we love them for it.

They can turn animal crackers into an epic story.

They know how to work an inscrutable health care and insurance system to get what your child needs.

They will hold your hand and believe, even on the days you can’t. They know when to talk and when to stay silent.

They believe every child has a bright future. They don’t give up. They love each and every child just because. No one needs to prove anything to them first, and no one needs to earn their love.

They work for sticky hugs and don’t complain about the rest.

They still deserve more money.

As families come and go and as they themselves move from place to place, they often don’t get to see who ‘their children’ become. In many cases, at age 3 many of those kids move on. I hope that at 13, 23, or anywhere in between or beyond that I’ll be able to send them a story or two about the kind of person J-Man grows up to be – better yet that he will be able to write to them – and to say thank you for everything. They are as much responsible for the progress he has made as they are for all the things he will yet discover how to do.

Thanks, Meg. We owe you. May the dollar stores always have what you need for your magic therapy kits, and may all your days be blessed.

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Apparently Vomiting Improves Gross Motor Skills

June 19, 2008

Well, probably not… Though I could probably poll some former college friends and they might provide some corroborating evidence for this. J-Man literally put the ‘gross’ in ‘gross motor skills’ tonight. After hurling up his entire dinner intake and probably parts of previous meals, he proceeded to walk up the dozen steps to our upstairs […]

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I Want to Play My Computer Game, Please

June 17, 2008

Recently we have been laminating fools over here in the Flashlight household. The J-man has really been into his alphabet flashcards, so we decided to laminate them before he completely shredded them. While we were at it, we (OK, Tim) laminated eleventy-seven pictures of things for the J-man to do. Some were therapy related (the […]

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