I need a fork–solving communication problems in autism.

by Jennifer Dyer

The other day at Special Olympics practice I saw a friend who substitutes in Rachel’s class. After catching up, she told me about the last time she subbed.

She said something like, “Rachel kept asking me for something at lunch. She showed me her hand moving from her food to her mouth. I couldn’t figure out what she wanted. Was it chips? Her lunch meat? Poor girl. It took at least five minutes for me to figure out she needed a fork.”

My heart clenched. Rachel has barely learned to use a fork in the last few months. Before, handling utensils was too overwhelming for her. I try to remember to include her fork in her lunch, but I forget. And here she was trying to do what was right, but having trouble because she can’t communicate clearly.

For Rachel, I think communicating is like trying to drink a waterfall. Overwhelming. There is so much involved. Her mind can’t get it all going at once. Autism is like a veil over her mind, making the world more confusing. Add onto that apraxia of speech, which can be like having a blender mix up the sounds you want to say before it can get to your mouth. The process of putting sounds into words is daunting.

About six years ago, I velcroed (is that even a word?) little word pictures and symbols all over the house. Grandpa even bought us an expensive software program to build the pictures. I put them in the fridge where I put the lemonade so she could hand me the picture to ask for a drink. I put them on the grapes. On the TV. On the…you get the picture (har har).

Picture Problems.

But all they served was to give Rachel something to pile up and flap in her hands. It was too early. The pictures were such a disaster I gave up. We eventually used them again in a notebook when she was about six, but her therapist wanted us to move away from the pictures when Rachel started using more signs.

But signs are difficult. Sometimes people don’t understand. Rachel has trouble making her signs clear, too.

A multi-faceted approach:

So I think, at least for Rachel, a combination of communication systems has helped. Some people said it would confuse her, but Rachel uses all sorts of methods to communicate: she points, gestures, signs, shows me pictures, types in symbols on her ProLoQuo app on her iPad. She also uses some word approximations.

The signs are good because it is more close to real time communication, and she always has her signs with her. Pictures are great because they are usually clear. (For instance, when she wanted me to find a toy, she brought me a picture of her room and pointed to the toy.) The picture symbols with words on them are good because I think it helps with reading. (In addition to being a mom, I’m a speech-language pathologist, for what it’s worth.)

Some people also said I had to choose a communication system and stick with it, but I disagree with that too. We use different ways to communicate, so why can’t Rachel? Several of her speech-paths have agreed with me. Some haven’t. It probably all depends on our experiences.

I know my child. You know your child. If you think having different systems is overwhelming, keep it simple. But if you think she can handle it, different methods, I think, will help the brain generalize communication. For instance, the more Rachel learns about letters and putting words together, the more she understands language. The more she sees printed words associated with pictures, the more she learns to read.

Concerned using sign language or picture symbols will inhibit speech? Don’t be. It actually helps to build a foundation and positive communication experiences.

Worried your child won’t speak? I was too. I even got into a pretty heated discussion with a speech-language pathologist a few years ago over this. She had been taught past age five the brain lost its ability to be plastic enough to learn a skill like speech.

Research is starting to show the opposite. I remember from our Relationship Development Intervention (RDI) training, that the brain does continue to learn. Other programs are having success with teaching children to speak after age five. As I said, each experience builds on the next, especially with language. The important thing is to find some way for your child to communicate and build on that. There are problems like muscle weakness or stiffness that can inhibit speech, but Rachel doesn’t have those issues.

And realize this is a long journey. It doesn’t change instantly.

The brain is like a city filled with roads. Each experience builds new thoroughfares, and makes the roads bigger. The more pathways you can build, the better off the brain will be. The more you use certain “roads,” the bigger they get.

So, for Rachel’s lunch and her fork problem, I used my phone and PicMonkey photo editor to make her another little word symbol. I put a plastic fork on a piece of white printer paper and took a pic. I uploaded it to PicMonkey and added the writing. I printed it on tag board and put clear contact paper over it. Then I put sticky velcro on the back.

Pretty simple, once you have the supplies. (These are the ones I have on hand. The brands don’t matter.)

And I velcroed it into her lunchbox.

It’s a clear way she can tell someone to get her a fork the next time I forget. The more I do this the better off she will be. It fosters independence and feelings of success.

If pictures and words are helpful to your child, the good news is you don’t need those expensive computer programs any longer. I mentioned PicMonkey photo editor. I use the free version and my phone or symbols included in my Microsoft word program to make what I need. It’s fast and easy. And free!

Will Rachel ever talk? I don’t know. She’s trying. And I believe the brain is plastic and can learn. So, I have hope. Will it be easy? No. But the more she learns to read, the better she understands the structure of language. It’s a long road. Sometimes I feel like the bear who went over the mountain and sees…another mountain to climb. But I still have my hiking boots and a granola bar somewhere in the bottom of my purse. There is hope. It is dim at times and sometimes I lose sight of it, but it’s there.

For more examples of how I’ve used word pictures and symbols, see:

Preposition lessons with Rachel.

As the bus turns. (simple social stories)

 

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Special Olympic practice–if at first you don’t succeed…

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Last year we took Rachel to Special Olympics (SO) track and field practice. At first, she walked willingly to the track, excited to see the people. Some had been on the SO swim team we had tried. But then she heard the whistles. And the cheering. And the clapping. And we ran. Once.

She was finished after that. She sat on the track. It took two of us adults to carry her off. Repeatedly. She also kept telling me she needed to potty, her coping mechanism. The third practice Rachel hid in the closet at home and refused to come out.

I could have pushed her last year and made her comply. But I knew in the long run she would hate going, so I didn’t force the issue.

This year we decided to try again.

And things are different. Rachel wears tennis shoes now! Big change from the fuzzy boots she insisted on wearing last year.

She wanted to go potty, but I told her no and she gave up asking after the tenth time.

Rachel also is willing to run a little. True, we are like turtles out there, but she laughs while we go. The whistles bother her, but she only covers one ear.

She also can stand in line better and is more interested in throwing the softballs. Overall, she is calmer and seemed to have a good time–at least I didn’t have to wrestle her at all.

What’s my point?

With autism, and kids in general, sometimes the long way around works. I told the coach I was looking at this with a long-term perspective. We might not compete for several more years, but by going at a slow pace, Rachel learns to think of track positively and is forging friendships I hope she can cherish in the future.

At this point, she does little more than smile and give high fives, but I think of each experience as a tiny brick. Put enough together and you have a sky scraper.

May you build sky scrapers with each smile, each hug, each cherished moment.

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