Here’s the original post from my husband, Alex. I could have reworded it to better fit my blog, but he said everything I was feeling and more:
A few days ago, a colleague forwarded me a story about children with autism using the new iPad to communicate. For those of you not familiar with the DynaVox picture-to-speech device, it’s insanely expensive, and most people can’t get one because their insurance doesn’t cover it. Lo and behold, I found that a lot of parents with autistic children are interested in the iPad. Please see the articles here, here and here. You’ll notice a lot of references to the Picture Exchange Communication System– that’s the therapy that has been recommended to us for home use. I’ve linked the Wikipedia article for your perusal.
My son is 3 now, and he has a lot of work ahead of him. His communication impairments are severe, and it takes constant vigilance on our part to help him learn to speak. As of this moment, he mostly echoes what is said to him in the hopes that we will give him whatever he wants. If we are lax in our teaching methods at all, it starts a cycle of immediate regression. You can imagine how it feels to see him just locked in his own world, unable to respond to most external stimuli, and how I would do anything to help him adapt to our world.
A lot of you have asked how my son is doing ever since my post shortly before episode 27. I just want you all to know he’s improving, and we’re starting to get a handle on the scope of his disability. There isn’t a lot of hard data on autism, even though it’s one of the fastest-growing diagnoses in the world. That means that there are a lot of quacks out there who are more than willing to make a buck at the expense of your child’s health. Originally, I just dismissed this iPad thing as a fad.
Then I gave my kid a DS to play with.
It was incredible. He held the pen like a pro! You can see the gears turning, and I hope the possibilities are present in your mind. To you, he may just look like a normal three-year-old… but I guess that’s the point, isn’t it? Just like a normal boy. I wanted to cry.
There aren’t a lot of accessibility apps for the DS, as you can imagine. With its giant hinge, it’s not exactly made for toddlers. To make matters worse, his therapy, the only therapy that has worked so far… comes out to $24k per year, with no insurance coverage.
I never meant to ask you all for help. I wanted to make a product I could sell you instead. But here I am, asking if you will ChipIn to help us get an iPad for my beautiful son. I promise to post videos of his brilliance.
on Jul 20th, 2010 at 10:17 am
I have long been disgusted with the cost of assistive technology or at least insurance companies’ failure to cover them. Everyone should have the right to communicate. I’m glad that your little man is doing well. He holds that pen like a pro!
on Jul 20th, 2010 at 3:44 pm
I echo Jen’s comment. I am so happy for you guys and Ari, he’s got some kick butt parents with some kick butt friends! Yay!
on Jul 20th, 2010 at 7:47 pm
your little man seems to be doing great! I would have donated more but I have an impending wedding and house coming up in the next few months. I saw you made it to your total already so I hope my contribution can still go to you guys in some useful way. I see the contribution is up till December so after the whole wedding and house buying business is up I’ll see if I have any more to give. ^_^
Good luck! You amaze me with your wonderful parenting skills and gift for craftiness.
on Jul 22nd, 2010 at 9:11 am
[...] And also… If you’re a fan of Dabbled friend The Domestic Scientist, stop by and help her out… Apparently there are some great tools on the iPad for her autistic son. [...]
on Jul 30th, 2010 at 12:12 am
He is rocking the DS! How cool that you found something he likes! Don’t underestimate the use of DS time as a motivator for other, less favored tasks.
You’re right, the big box of words is hugely expensive, and I don’t know why. I saw a patient with one, though, and I knew him before he got it and then after, and it was HUGE how much better his life was after he got it (and learned to use it, which his mom said took some time before he saw the point of it,)
on Aug 5th, 2010 at 6:40 pm
Hi there, Our 10 year old son has autism, and an intellectual disability (as do 20 % of children with autism so I am told), however he is an absolute whizz at computers, DS, and iphone. When he was 3 years old, he was rebooting the computer at his long day childcare service, and would then wander off smiling as no-one else knew how. We have used his love of technology to motivate him to talk. His love for TV was his inital motivation to start with, and if he pointed at the Dumbo tape, we asked if he wanted Daffy Duck? Bugs Bunny? Kimba?-anyone but Dumbo, and then came the day when he looked up in his frustration and yelled “Dombo!” That was the eye opener. He initially pointed and grunted at most things he wanted, but due to our tough love moves, he can now express himself. His initial diagnosis was of severe expressive and receptive language delays, and the earlier you start, the more chance of a good to great result. They really, really, really are just little sponges that soak up so much that you dont know they can. And our son will now tell us what he wants, and what will motivate him, so it is easier to find his trigger, to help him achieve a more positive outcome. Keep up your great work. There is a business in Australia called Technical Aid to the Disabled, and they rent computers to the disabled for about AUD$100- per annum. The characters on the DS are also in their websites, and in games so it is another option to the DS. And our son has learnt to spell so he can get into websites he wants. Although he copied them from the DS box or Playstation pack to start with. They can be so crafty!
Cheers Deb