June 2010

Updated 6/23/10 – Graduation video! Grab some tissues and prepare to be inspired. Thanks to the proud mom for posting it! Congrats Jeremy!

Alternate link to YouTube video

Many of you have probably read one or more of Chantal Sicile-Kira’s books on autism, particularly Autism Spectrum Disorders: The Complete Guide. Through her books and interviews she’s done, you get glimpses into the life of her son Jeremy, who is now 21, and the many challenges they’ve faced and overcome together. If there were ever an example that being autistic and unable to verbally communicate doesn’t mean you can’t do incredibly awesome things, Jeremy is it.

On June 18, Jeremy will deliver a commencement speech at his high school graduation using his assistive communication device. He graduates with a 3.70 GPA and will attend college this fall. His seven years at Torrey Pines High School striving to achieve this inspiring goal is a testament to perseverance and determination. He dreamed a great dream and together with the support of family, school, and many others, he made it happen.

Of course the first thing that came to mind was the dream I had some time ago about the J-Man. Not surprisingly, reading about Jeremy’s achievement made me burst into tears and smile all over at the same time.

So thanks for being awesome, Jeremy Sicile-Kira. You inspire us and make us believe.

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Thanks for being awesome, Eric Duquette

by Tim on June 17, 2010

We’re getting a double-dose of the graduation awesome this week! I write this on the eve of Jeremy Sicile-Kira’s graduation from high school and the inspiring speech he will give. Hopefully we’ll get a chance to see it online somewhere soon.

Earlier this week, ABC News featured Eric Duquette, salutatorian at Smithfield High School in Rhode Island. Grab some Kleenex, cry some inspired and happy tears, and read on when you’re done.

You can read more about him and his family’s amazing story on the ABC News site.

And, of course, I’m still reminded of my dream about the J-Man, and I still get that good kind of tears.

So thanks for being awesome, Eric and Jeremy. You both inspire us, you’ve put down a trail for us to follow, and you’ve shown us how determination, love, and hope are stronger than every challenge before us. We’re proud of you, your families, and the supporting casts of hundreds and thousands who’ve walked with you along the way.

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“The doorstep to the temple of wisdom is a knowledge of our own ignorance.” – Benjamin Franklin

We have been people of extremes around here lately. I’ve been burning the candle on three ends with work projects and am at that stupid kind of tired right now. Mary has been going full on at work too. Dale Jr. just keeps doing his thing and impressing us with the seemingly endless strings of new things he discovers every day, and mixing in some obstinate behavior while he’s at it. And the J-Man, well he’s been all over the map of late.

His major leap forward lately has been the amazing improvements he’s made in his receptive language (his ability to process and understand what you say to him, and hopefully respond or act accordingly), which has been such an endless challenge for him his entire life.

I still remember what for me was the most heart-wrenching example of his struggle with receptive language. I was sitting with him at his old preschool back when he was two, and the kids, parents, and teachers were all singing “If You’re Happy and You Know It” in a circle. For the most part, the other kids were doing clap your hands, stomp your feet, and shout Hooray! more or less on cue.

I watched him focusing intently on what the others – particularly the teachers – were doing with their hands and feet. I could see in his eyes that he knew the song and the movements were somehow related. And then I saw a horror creep into his eyes as he turned toward me and grabbed fistfuls of my shirt in panic.

I believe it was for him a realization that he simply could not figure out what he was supposed to do and how to get his body to do it, and that he may have seen himself as the only one there who couldn’t. I cried the whole way home. I will never forget that look in his eyes and how completely powerless I felt to help him. And though it strengthened my resolve to work even harder for him, my heart hurt for him and all the confusing and powerful emotions that I knew were going on inside him.

Within the last week or two, we’ve noticed an enormous leap forward in his ability to understand requests and carry them out. He can’t yet verbally demonstrate his understanding much, of course, and we don’t put him in a bind by pushing him hard to respond verbally to questions without visual aids of some sort. Mostly we look at this in how well he completes things you ask of him, both familiar and not-so-familiar tasks.

We’ve worked at verbal-only (minimal or no visual cues) requests around the house – obviously a familiar context – to help push him a bit in this area. For example: “Go to the table and sit in your chair”, “Let’s go upstairs and change your clothes”, “Walk to the bathroom and let’s get ready for bed”, “Take off your pajamas and get in the shower, please”, “Go to your food card and tell me what you want to eat” – you get the idea.

In the past, we’ve had to repeat our requests many (or many, many, many) times before he responded in any way, assuming he acted at all. Sometimes he’d start off like he was going to do it, but then would stop and get distracted or go do something else or go back to where he started or just stop entirely. Eventually he might work out how to do what you requested. Over time and with repetition, he’s been able to do things more readily, but many things don’t come easy to him. All of this is understandable, of course, when you think about the bazillion competing thoughts, signals, and inputs he has to process at any given moment.

I have wondered whether he’s stored all of our myriad requests in a mental database, and when we ask him to do whatever it is, perhaps his brain runs through that database until something like the query “Daddy is asking me to go to the couch to do socks and shoes” matches up with “I walk over to my spot on the couch and I sit down. Then I hold up my right foot and Daddy puts on my right sock first, then I hold up my left foot and he puts that sock on. Then I hold up my right foot again and he puts my shoe on over my sock, then I hold up my left foot and he puts that shoe on, and we’re done.” And that’s how we do it, every time. And the order of socks and shoes can theoretically be different, as long as I’m not the one doing it and we’re not at home. Perhaps it’s that as long as the process keeps matching what’s in his database, that allows it to slip by all the sensory noise and rushing thoughts intact. The moment it doesn’t, the database doesn’t have any more matching answers and the chaos takes over.

I’ve wondered whether the receptive language issue involves to some (or to a large) extent the ease at which he can access and recall things from his database. I do some database programming for a living, so this concept fascinates me. Is it now that he’s really starting to figure out how to use it effectively? Is he starting to notice relationships between similar ‘entries’? (e.g. Getting dressed for bed seems pretty much the same in this room as in that room, though if I get dressed in Mama and Daddy’s room then they let me lay down on their bed for a few minutes before I go to my bed, and I like that.) I think he is.

And this leads to a much more challenging problem. He’s been having some wild behavioral swings lately. Places we’ve been going for his entire life – like Target – are suddenly occasions for the worst meltdowns we’ve ever seen from him. Things he’s loved doing, like being in the jogging stroller, are like torture. For no discernible reason, he just falls apart in the middle of things we’ve done for forever, or even things we just did yesterday or an hour ago. We’ve been completely baffled by this.

It’s been physically and emotionally exhausting trying to figure this out. He becomes inconsolable and more and more uncontrollable physically. At home, we can just give him a soft, non-dangerous space and work through it with him as best we can. The dread of even looking down the road of self-injurious behaviors scares us beyond words. Even writing that last sentence made me start shaking. In someplace like Target, it’s been a miracle lately if any of us get out without multiple injuries. We can’t keep this up.

And here’s where all this is leading. I talked for a bit with his teacher the other day and she had a brilliant thought (very common for her!). If he’s really beginning to understand the world quite a bit better and knowing how to do some things with a lot less prompting or respond to requests with a lot less help now, then what if there’s much more to this? What if he’s realizing now just how much he still does not understand? What if before he just looked to us for prompts in every situation and didn’t think about the world much, and now that he’s taken on responsibility for some of the things he needs to do in his daily life, he really is getting a sense of how big and complicated and full of new things the world is that he has no context for at all?

Wouldn’t this scare the crap out of you?

What if someone dropped you into a class in advanced particle physics (assuming you aren’t already an expert in it) and said your assignment was to create a unified theory for everything that exists? Oh, and the class is taught entirely in the Navajo language, and you aren’t allowed pens or paper, and if you don’t finish in the next two hours, you’ll die, and the entire universe will too. It’ll probably take you less than a few seconds to become acutely aware of the vastness of what you don’t know, that it’s impossible for you to know it, and that your situation is completely hopeless. Your life and the universe are unraveling, and there’s not much you can do about it. I’d bet you’d panic too.

And after thinking for a couple of days about what his teacher said, I realize we’re back in that preschool room again singing “If You’re Happy and You Know It”. I see him looking out into the everyday places of life, and I can see in his eyes that he knows our words and these places and our actions and certain expectations are somehow related. And then I see a horror creeping into his eyes again as he turns toward me and grabs fistfuls of my shirt in panic.

I see his realization that he simply cannot figure out what he’s supposed to do and how to get his body to do it and his senses to process and make sense of any of it. Perhaps he thinks he’s the only one there who can’t. And again my heart hurts for him. And again our resolve to help him strengthens.

I know that awareness of how much we do not understand is how we grow. It really may be the doorstep to wisdom, but that doesn’t make it hurt any less, and quoting Ben Franklin to him won’t soothe his recent mortal fear of stores or his horror that the world too often makes absolutely no sense at all. The comfort I draw from this right now is a belief that we will go through this to get somewhere better, to a place where we are wiser and more at ease in the world and more able to fully express the best of who we are.

And our resolve will strengthen once more, and we will limp and drag ourselves there any way we can.

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