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Posts Tagged ‘autism’

A Flash of Recognition

I was running errands, when completely out of my way, I saw someone with a cardboard sign. I had no cash, and couldn’t read it, but something about the man standing there set off some sort of alarm in my head. I wasn’t sure what it was, though.  So I mentally decided to get some cash back from my purchase, and swing by his street corner on the way home, and if he was there, I would give him some money.

Well, the light was green but he was near a parking lot, so I pulled in.  With a bit of Brooklyn still in my bones, I stashed my purse in the back seat in case it was a ruse to lean in and rob me.  I rolled down my window, and the man came over.

By this point, his sign was folded over. He had been by the road but not holding up his sign.  He was rocking, and pacing, like Ted does when he is distressed. Instead of a sign to alert people of his need for money, food, shelter, it had become to him something to ‘stim’ with.  He folded it and moved it in his hands like Ted does with rectangular objects.  

I told him I had seen him before, but couldn’t pull over. He said thank you, and then some unintelligible words.  They weren’t like the jibberish of a homeless ‘crazy’ person on the subway. My experienced ear recognized it as the sounds and attempts of speech of a person with very little ability to speak. Half words. Constantants and a vowel after.  He couldn’t make eye contact, he continued to rock and stim, and stuck the money in his pocket without looking at it, as he walked off to pace and rock by traffic again, his sign unable to be read by someone because he did not even have the ability to understand socially that to beg for money from strangers, your sign has to be able to be read by them; they have to be able to see you.

Ted does that. He often picks out something he wants to do, see, or eat on his ipad. He will find a picture or go to an app or website, pick out something, and make a noise, “ba”, which means, “the thing I have a picture of here is something I need or want”. But because of the lack of social understanding, he doesn’t actually make sure the volume is turned up, or that he is showing me the screen. If HE knows what is on the screen, he assumes everyone else does.  

All my son has is a very expensive piece of cardboard.  He tries to communicate to the world, just like this man did.  My son usually communicates that he wants some french fries, or that he wants to watch some sponge bob. Maybe he wants to go to the park.  My son will be ok if he doesn’t get to watch an episode of Invader Zim.  

This man needed to communicate the message to the world that he was in need. In need of things more important than a cartoon or some french fries, but he was unable to communicate as well.  

This is a paradox of autism. Often, people will pass IQ tests, and not be able to get much assistance because of this.  Their disability can be severe because of this lack of ability to communicate and read social cues.  But it isn’t the RIGHT kind of disability to get help from others. I know many people who fell through the cracks.

I left, teary eyed, and for once glad that my son’s disability is so severe that he probably won’t have to beg on the streets.  He may face many other challenges and is at risk for other things, but for once, his IQ problems and his complete inability to communicate fluently was a plus.  On some levels he is at risk if he IMPROVES, and may be pacing on a corner somewhere, alone, when Dan and I are gone, because he will be “too smart” for disability, “not disabled enough” to get any help.  This man is someone’s child, and no one has a child expecting their life to be like this, and they certainly don’t want it for their children.

Please don’t let someone’s child starve alone on the street.

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Last month, Ted’s ipad went missing. Since Dan wasn’t working, we couldn’t replace it, until today. I downloaded his stuff on the new one from the icloud thing, and found THREE VIDEOS by the thief (or child of). PLEASE pass this on. The ipad was Ted’s way of communicating (we have an app called TapSpeak). He’s been lost without it. Even though we replaced it, there was plenty of contact info on the ipad. They could have got it back to is. PLEASE help us find this family. IF you’re in Dubuque especially PLEASE PASS THIS ON. The most recent 3 videos are the kid with the ipad. PLEASE HELP US.

With more digging into the ipad, we found an email address for the person who has it, too.  It was obvious it belonged to a child because of the apps on it. There were also apps that had the word AUTISM in the title.  Lastly, besides the communications software, there were other apps that would indicate that it belonged to someone who had some sort of disability or cognitive problems.  The parents of this kid had to know. They knew enough to turn off FIND MY IPHONE, but not enough to realize I had it automatically sending stuff to icloud.

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Grover

Image via Wikipedia

One of the first apps I got on my son’s iPad was something I wanted for myself. The Monster at the End of This Book was one of my favorite books growing up.  When I saw it was at the iPad store, and it still had Grover, and not Elmo (which they had when my daughter was the age for this), I had to download it!

It keeps true to story, and is interactive in a seamless, appropriate manner.  It encourages the child to be involved in the story, in subtle ways. If they still don’t get what to do on a page, Grover will hint, building up the hints until the work is done.  He does it in a way, though, that suits the story. “Whatever you do, don’t touch that. Not that corner over there. That will make the page turn. You don’t want to turn the page!” Things like that, and maybe a bit of a flicker or flash to show where the child should touch.

My son is completely non-verbal, and can’t really read much at all.  He’s never been interested in reading, either.  He’ll look at I Spy books, or flip through something with a character he likes, but not much more than that.  After a while, though, Ted would read along with the book, running his finger under each word as it was said. Each word comes on the page one at a time as Grover says it, and he’s really starting to learn the relationship between what is said and what the word looks like. That interaction is probably helping him read more than the constant drilling we’ve done over the years in school, in therapy, and in the home.  He reads it every night before going to bed.  He also is engaged with it more than most other apps, without perseverating on it, reading it over and over for hours on end.  It’s also made a great reward for his educators and his therapists, because he will work for enough stars to have time with this app.

I’ve seen a number of children’s e-books, and apps based on children’s books. This is probably our favorite, and save for a handful of others, one of the better crafted ones. You can tell that not only did the software developers know what they were doing, educators and other professionals who know about development of literacy skills and children were involved. All the little touches not only make this app more enjoyable, but are a great way to help an emerging reader.

This award-winning app is $3.99 at the Apple App  store.

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We finally got Ted an iPad, primarily for use as an AAC device, but we knew there were other apps out there that might be useful.  We’ve found autism related apps, educational apps, some really fun apps for rewards, and lots of communication apps.  We also found a fantastic case for it, too!

It’s a shame that insurance does not cover these. An AAC device starts at around 3k.  An iPad with a good case, good AAC software, and some other apps? About 1k.  But the insurance would rather pay 3k and up, because those devices are for communication only.  Heaven forbid someone has something that can be used for things other than the intended purpose. They’d rather throw money away. No wonder premiums are so high.  Insurance companies will not use common sense when it comes to deciding what to pay, and what not to pay.

I hope to be reviewing some of the apps we’re using.  The whole experience is a real game changer. It’s made an impressive difference in my son’s life.

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If you’re a parent with a child on the spectrum, you’ve probably responded to the same annoying remarks and questions a thousand times. Here’s a handy list of responses that…you’ll probably never use out loud (but are fun to imagine using)!

via Top 10 snappy answers to annoying comments about autism | Autism Support Network.

I need to memorize these…

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I made this video today, based on actual conversations over the years.

http://www.xtranormal.com/site_media/players/jwplayer.swfhttp://www.xtranormal.com/site_media/players/embedded-xnl-stats.swf

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My son started Camp Bee A Friend this week. This camp pairs off children on the autism spectrum with their typically developing peers, sharing the camp experience together. It’s not about therapy, academics, things like that, it is camp. Real camp with camp activities. Fishing and swimming and crafts and lunch and songs and games and sports and all the typical day camp stuff — something that kids on the spectrum, particularly ones like mine, don’t really get to experience.

Now, one of my fears with Ted is that he’d be alone when we were gone. That the only people who would be with him would be obligated to. Family members, and people who work with him. Maybe a roommate in an apartment or group home. It’s one of the things that makes me sad, the thought my son may never have a partner, a family, a social life. He’s still non verbal, and he doesn’t really notice other people a lot. He doesn’t interact, usually. And since there are a lot of things he doesn’t understand, what could he bring to the table, friendship-wise? This breaks my heart on a regular basis. I try not to think about it, because it makes me want to die inside.

Well, when he got on the bus to go to camp, another kid came by. He looked at the open doors, looked over the seats, and said, “I want to sit next to Ted!” I smiled, I made a pleasant remark to one of the staff members standing there (as well as continued to discuss how Ted doesn’t eat lunch) and left.

And then proceeded to cry the entire drive home.

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