Thursday, October 6, 2011

A thank you to Steve Jobs from a special needs mom


Dear Steve,

I am hoping you will read this on your iPad in The Great Beyond, assuming there is a good Internet connection there (and hopefully a Starbucks, too).

My son, Max, has cerebral palsy. Doctors told us he might never talk, and so we are very grateful for the words that he has. He has a lot more going on in his mind than his mouth can speak, however, and we knew early on in his life he would need a communication device. He was 4 when I first asked the speech therapist at his school about it. "He's not ready for one," she said.

I challenged her. We had an augmentative communication evaluation, paid for by our school district, in which a team of therapists determined that Max was, indeed, ready for a speech device. We got one. Only it was a total clunker, and I mean that in every which way. It was heavy to lift; my son, who has challenges using his hands, wasn't able to carry it himself. Programming it was a pain, and my husband and I detested the task. We rarely used it at home, preferring instead to guess what Max was trying to say or nodding even when we weren't quite sure we understood him. Sometimes, we all got frustrated.

Cut to the spring of 2010 and the iPad's debut. Around that time I heard about a speech app, the Proloquo2Go. I asked Max's speech therapist at his current school, an enthusiastic and dedicated woman open to trying new technology, about them. Turns out the school was buying four iPads with speech apps, and would we like to trial one with Max? YES YES YES, please, WE WOULD.

Max took to the iPad from the start. He was fascinated. Who wouldn't be? Here he is, the first weekend he had it:


I hadn't ever seen Max use his pointer finger like that, no small feat for a child with cerebral palsy whose hands and fingers tend to be stiff. The iPad motivated Max to isolate his finger and maneuver it. Soon enough, he'd learned to use a lighter touch on the screen and he'd zoom around the iPad. He also discovered YouTube and Lightning McQueen videos, another life-changing event for him.

We had somewhat of a challenge in our house when Max's little sister, insanely jealous of his iPad, started hiding it in her room. But then my husband got an iPad and now she hides my husband's in her room.

The iPad has enabled Max to share what's in his mind with the people around him. Some parents worry that a speech app will discourage verbal communication, but Max's has motivated him to communicate more. His current favorite button is the one that announces "That stinks." He enjoys telling people how much he loves spaghetti and the color purple. There is no button yet that says "Mom, leave me alone!" but I am sure he'll request one soon.

Max uses the iPad to draw, read stories, and play educational games, along with silly ones kids love. Apps made for fun, such as Talking Ben the Dog and Songify, motivate him to articulate sounds and words; ones like Cut the Rope help develop fine motor skills. He continues to watch too many Lightning McQueen videos and I hear "I. Am. Speed" in my dreams.

Other kids in our neighborhood consider Max's iPad and speech app cool—not something they would have ever thought with the previous communication clunker. It helps him fit in. I can't even imagine how many more social and educational doors it will open for him in the coming years.

Steve, you have been an inventor and innovator beyond compare, known for the Apple, Mac, iPod, iPad, even Pixar. Yet many are unaware of how much the iPad has been a game-changer for kids and adults with special needs. When I tell people that Max uses an iPad for speech communication, they are often surprised to hear that technology exists.

But this community knows.

This child knows.

This mom knows.

And I am eternally grateful to you for opening up my son's world.

So I'll say R.I.P., and by that I mean Refresh In Peace. Because I can only imagine that you will keep going, wherever you may be.

30 comments:

  1. I hope Steve saw max'a videos I will miss him as well

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  2. Great post. I want an iPad for my son too. Thx Steve Jobs

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  3. As I was watching all of the tributes on the news this morning, I was thinking this same thing. What an amazing genius.

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  4. Ellen, you should post something about this on the NYT website which is asking for submissions. It is beautiful.

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  5. I totally agree!! I was thinking the same thing as I was driving to work this morning - the iPad is truly an innovation for special needs children - I am grateful for it. My T-man loves it!!
    Kristen

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  6. Wow. Just, wow. Max is so bright! That was his FIRST WEEKEND using the thing? I'm 21 and STILL can't work my way around my iphone!

    By the way Ellen, I think I could listen to your voice all day long! It's as clear as a bell and so refreshing. Makes me think of ice water. Maybe you could record a video blog post?

    Alice

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  7. Not only can my son now communicate with his iPad, he can also learn, show us what he knows, etc., etc.

    I sure hope Steve (and his family) knows what he has done for our community. What a blessing.

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  8. As a future speech language pathologist, I am so joyful and excited when I get to hear stories like Max's. There is a growing body of research to support the fact that augmentative and alternative communication devices do support spoken language development as well. Thank you for sharing and hopefully the future will bring even more new and rich opportunities for communication.

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  9. Thanks for expressing what so many other special needs parents are feeling today. Well done.

    r, John

    John Quinn
    Author of Someone Like Me - An Unlikely Story of Challenge and Triumph Over Cerebral Palsy

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  10. I am sure he is smiling from above, that was a beautiful story, I hope you email it to Apple as they should be aware of how much it has impacted special kids. Ryan uses it as well, it has been a lifesave. To make you feel better, Ryan too has discovered UTube, and is for some reason obsessed with Japanese toys.
    Well written.

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  11. As another mom of a child w/CP who's iPad has opened a new world, THANK YOU for putting words to what so many of us feel. Well done!

    Cynthia
    www.reachingforthestars.org

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  12. A beautifully written post. Thank you for putting into words what we have been thinking all day. Steve Jobs was truly an incredible man.

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  13. Love this.
    Thanks for sharing. "Refresh in peace." : )

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  14. My grandson with Prader Willi Syndrome loves his IPAD. Thankyou Steve.

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  15. My autistic son loves his I Pad and I Touch - Before we got it, we had no idea he was the world's greatest speller - we think he has a real chance of becoming literate now which was not even on the radar pre I Pad !! Steve has left a lot of legacies here on Earth

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  16. Beautiful! Congratulations to Max and thank you to Steve Jobs.

    Thanks for sharing.

    P.S. Your son looks a lot like the little boy in the documentary, "Including Samuel."

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  17. Thanks for sharing this with all of us. I am eternally grateful that Steve Jobs seemed to be a wareof his purpose and followed it.

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  18. I just want you to know what an amazing blog you have here. Ive been lost in it reading for almost an hour now

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  19. He was a genius RIP Steve and thanks again on behalf of Max and kids like him :)

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  20. What a terrific story about Max and his iPad. I imagine it's been done, but I do hope the Jobs family get to hear about this aspect of Steve's work and maybe get some further comfort from it. God bless you, Steve Jobs.

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  21. wow,that's amazing I am so happy for your family

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  22. Thank you for writing this. It was sent to me by my niece, also the mom of a special needs kid, and it made me more aware of the beneficial effects technology, especially Apple technology, can have. Best of luck to you and Max!

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  23. Thank you for sharing, max is amazing, can see the hunger to communicate bursting out of him. Our daughter is only one, we bought an iPad specifically to encourage fine motor after she showed no sign of pointing or movement control. Peekaboo barn brought her fingers out, sound touch brought the wobbly pointer out and weeks of work have proved this is technology at it's best. RIP Steve, your foresight is enabling.

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  24. I am an OT working in the schools and it is so VERY EXCITING to see doors being opened and "Aha" moments!! Love your beautiful tribute to Steve Jobs. I agree he changed many lives.

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Thanks for sharing!



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