The Gift Of Communication For Kids With Autism And Other Special Needs

February 10, 2012 at 11:04 am , by Ellen Seidman

It is often hard for me to understand what Max, my son, is saying. His cerebral palsy makes talking clearly a challenge, though he doesn’t let that stop him. Lately, in fact, he’s been trying to articulate more and more words. He often uses an iPad with the Proloquo2Go speech app at school and at home to speak what’s in his mind, technology that’s amazed me since the first time I saw him try them. His last speech communication device was clunky and hard to program and none of us liked it much.

I’ve heard of letterboards for children with autism, which enable them to point to letters on a small board to spell out words, and recently got a glimpse at their powers. The other day I attended a luncheon given by Ladies’ Home Journal magazine (recently redesigned, and looking sharp!) in honor of cover girl Kate Winslet and the Golden Hat Foundation she founded. It’s a non-profit dedicated to eliminating barriers for people with autism and, as they describe it, “creating an environment that holds these individuals as intellectually capable.” One of the amazing goals of the foundation is to create a living campus that offer people with autism education, job training and recreational activities.

Kate’s children do not have autism; a couple years ago, she narrated the documentary A Mother’s Courage: Talking Back To Autism, which followed one mother’s quest to unlock the mind of her severely autistic son. That’s how Kate met the mom, Margret Ericsdottir and her son, Keli Thorsteinsson. Keli had written a poem called The Golden Hat about a magical hat that spoke for a boy “with no voice.”

During the lunch, guests watched a video of kids with autism spelling things out on letterboards—they’d gesture at letters with a pointer to put words together. “All my life, no one gave me the simple wish of communication,” said one boy, and I teared up.

There was another video of Kate hanging out in a park with some teens with autism in Texas, where Margret and Keli live. They were all using letterboards. “I want to rent your movies!” one spelled to her. “I think you’re beautiful,” said another. And when Kate called one of the boys handsome, another boy spelled, “Call me handsome!”

They were talking like any teens do, using a very basic tool. And this, too, seemed like a great gift.

Kate Winslet’s put a book together, The Golden Hat: Talking Back To Autism, in which she asked 100 celeb friends (including George Clooney, Angelina Jolie, Oprah, Sting, Kobe Bryant, Julia Roberts) to photograph themselves wearing a beloved old hat of hers and give a quote that communicates who they are. All proceeds from book benefit the Golden Hat Foundation, and you can buy it on-presale; it’s out March 27. It also features the first words of ten individuals with nonverbal autism. What Keli said: “I am real.”

In the book, Margret writes honestly and movingly about the challenges of having a nonverbal child. As she writes, “You have no way of getting to know his inner self, personality, expectations, dreams, wishes, favorite food, favorite color and so on.” The letterboard opened up her son’s mind and world. Until Max had better communication, I could only take an educated guess at what he was saying. Often I was right but still, it was a very narrow window of communication, and at times frustrating for both of us. These days, I know so much more of what’s in his head, from his desire to take a trip somewhere (preferably DisneyWorld) to exactly what he would like for dinner (chocolate ice-cream, please?).

Every single day, I am grateful for Max’s iPad and each word that comes out of his mouth—even when he’s telling me “NOOOO!” Every day, I am sure, Margret is grateful for Keli’s letterboard. I feel truly lucky to be living in a time when there are so many amazing options for giving our kids a voice.

What has your child communicated lately that really thrilled you?

From my other blog:

A thank you to Steve Jobs from a special needs mom for creating the iPad

Image of letterboard/halo-soma.org

8 Comments so far

1. by Jana

   On February 13, 2012 at 12:55 pm

   Wow…this looks fabulous. I feel so fortunate that Jackson has started talking so much in the past few months “I want Pizza!” being his favorite phrase. It was so difficult to know what he was thinking just a mere 6 months ago, and now he doesn’t hesitate to tell us. I’m happy that more and more kids are finding their “voice” in one way or another!

2. by Barbara Fischkin

   On February 14, 2012 at 5:00 pm

   I just got a Valentine’s Day card in the mail, picked out independently by Dan Mulvaney , my 24-year-old non-verbal son who has autism. The cover is two puppies licking a beer mug. Inside it says: “Every hour with you is Happy Hour.” He’s a funny kid, brat though he may be. This, I suppose, is the thanks I get for taking him to our “local,” where he eschews beer for soda but loves the conviviality, as any young man would.Was I thrilled? Absolutely.

3. by Lisa Helt

   On February 14, 2012 at 7:27 pm

   This is such a wonderful blog on communication! It is so important that everyone be able to communicate effectively. Only then can we fully see their true mind. Don’t let others tell you your child will never communicate …

4. by Trina Sherman

   On February 16, 2012 at 1:34 pm

   My son Matt also uses a letterboard although he has limited speech. Recently at a group session on the letterboard he said…”I like math because I think in numbers” and “Life is a whistle and you must blow it.”
   Autism…it’s what’s for breakfast…and lunch…and dinner…and and and and and and.

5. by Lynne Rhea

   On February 17, 2012 at 9:37 am

   Thanks for this blog, Ellen. It is time for our children with autism to be respected and valued. This is their wish, and ours as their parents. Please pass this along to other parents.

6. by Kathryn

   On February 20, 2012 at 2:12 pm

   As a member of Best Buddies at my middle school I found this article a tearjerker.One of the girls in that class has severe autism and is non verbel.The Ipad gave her the gift of communcation

7. by Jean@MommyToTwoBoys

   On February 24, 2012 at 12:10 pm

   Excellent post Ellen. One of the hardest things about my son’s Autism was when he was non-verbal. Thankfully, and I mean oh so thankfully, he started to really speak at age 3 1/2. I can’t imagine how hard it is for parents of kids who are non-verbal past that age, or for life. It was an honor to be a part of the luncheon with you and to work together to support such an amazing foundation!

8. by Angela

   On March 26, 2012 at 10:35 am

   I have a 4 year old autistic child, while he is high functioning, he definitely has deficits in communication. My friend has a daughter who is the same age, and can tell you what she did at school, and have a conversation–a 4 year old conversation, but she is conversant, none the less. My son isn’t anywhere near that-he can tell you what he wants in more simplistic sentences, and there are definitely times where we can’t understand what he wants. The most exciting thing happened the other day. He said, “Mom, I’m hungry. Can I have something to eat?” I have never ever heard him say something so clearly and well stated. It was just so great-definitely brought a tear to my eye

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