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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Taking Rachel to the mall.

by Jennifer Dyer

The other day, hubby and I decided to go to the maul mall. In a stunning move, Eldest opted out, but we knew Rachel would love it, especially the escalators and indoor fountains. (The trick would be keeping her from jumping into the water.)

Rachel didn’t always like going out. When she was three, an outing to any store would end in her screaming and stripping naked. And Mom would end up in tears. The sensory overload to her system must have been horrible, all the smells, sounds, people, noise…everything unpredictable and random from her point of view.

If she wasn’t screaming, she was darting away from me like in this story. I couldn’t go anywhere in shoes that did not get traction. Through years of therapy, we slowly worked on her staying beside us. (For more on how we decreased her darting behaviors, see here.)

We also learned to plan shorter outings, and did all kinds of sensory therapies to help her nervous system calm.

So, off we went to the maul (I keep doing that) mall, armed with her iPad, a packed lunch, and a bag of activities.

Our first destination was Fuddruckers. (It’s by the mall and has GF buns for their burgers. Yum-o. Plus, it’s kid friendly.) This, however, presented our first challenge. Rachel has very narrow food preferences, so what to do?

First, we examined our goals.

We wanted Rachel to sit in the restaurant and behave appropriately. So, the food was secondary. I brought her packed lunch, but ordered food I could share with her.

While ordering, though, Rachel wasn’t focused on the food. She made the sign for potty and yelled “Pah!” so many times it was amazing I didn’t order my cheeseburger with a side of toilet.

Hubby went off to find us a table, and I took Rachel to the restroom.

Which lead to our next challenge.

My anxiety level amped at the thought of traipsing through a public restroom, even though we do it all the time. As I mentioned in my last blog Walking with Rachel, I did the deep breath routine. Keep calm. It’s about the time with Rachel, not getting something huge done.

Rachel and I entered the stall together. When she FINALLY finished, I had to remind myself again that I had a goal in sight. This was about helping her grow more appropriate and independent, not rushing. So, I watched to see how she would do with the slide lock on the stall door. I had to watch her fail (agonizing) a few times and then walk through it step-by-step, but she learns best through visual and tactile methods.

We were ten minutes into our outing and hadn’t left the bathroom.

After we escaped, Rachel wanted to see the arcade games. I froze. I can’t recall how many times I’ve told her no in public and been rewarded with a huge tantrum. Sometimes I feel like the rat in the maze that’s been zapped so many times its fearful of making any sudden moves.

I had to remember the purpose: Appropriate behavior in a restaurant.

If this went south, we could get our food to go. I took a deep breath. “Later.” I grabbed our drinks and showed her to the super high tech drink machines. Whew. Redirection successful. Crisis averted.

We only spilled our drink once, so another success. I pointed to Hubby and asked her to walk with me to the table. I was afraid she would dart, but she stayed beside me. Yay.

We sat in the booth for an entire ten seconds before she started asking about the games again, but in the midst of her barrage, she passed me napkins and pressed her hands together to pray. I brought in her iPad to keep her entertained, if need be, but she actually ate some of her lunch with a fork.

Did the people in the restaurant stare at us? Yes. But did Rachel have a meltdown and strip naked? Nope. Woohoo. I’ll call it a success.

We managed the rest of the ten minute meal without major issues, and Rach was rewarded with some time in the arcade area where she played with the steering wheel on a game that wasn’t plugged in. Even better.

The mall was next.

Again, we kept clear goals in mind.

Yes, we were there to buy Rach some dresses, but I could always order them online. The goal was to have Rachel stay by us and not throw a fit when told no or waiting for short amounts of time.

Here is how we managed:

We alternated fun activities for her with each short shopping goal.

I grabbed some dresses for her and pointed out the escalator. As soon as I purchased our item, we rode the escalator.

We walked around the upstairs and took an escalator down. We looked in one store and went to the play ground. We stopped at a fountain before glancing around another store.

There were a few moments she had to wait, and without two of us it might not have been nearly as easy, but I kept everything to a minimum. If I didn’t find something within five minutes, we moved on. I tried on one pair of shoes off a sale rack, but nothing else. We kept moving as much as possible.

The trip was more about success for Rachel than getting stuff.

And we only stayed about an hour. That way none of us got too tired and lost our patience.

Mission accomplished.

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Walking together and autism. How we got one piece of our life back.

by Jennifer Dyer

Rachel was a darter. If we went out, I had to keep a grip on her hand or hold her. In fact, I carried her and an arsenal of blankets around until she was seven.

It was good for my biceps, but not helping us move toward a safe and independent future.

So, with the help of our Relationship Development Intervention (RDI) therapist, we went to work.

The goals:

Rachel would stay with us in public, not darting away from us.

Rachel would respond to nonverbal cues to remain with us.

Where we began:

We started as a family moving together. Hubby and I flanked Rachel, holding her hands. We would take between one to five steps at a time and stop, sort of like red light green light. The number of steps needed to be random–if we established routine, we would have more problems. The goal was for her to watch us, not count steps.

At first, we didn’t talk, either. She needed to learn to read visual and physical cues.

How it played out in real life:

Everywhere we went, we played this “game” of start and stop. The best places were those with tiles or segmented sidewalks because it gave her a sense of boundaries. But we had to do it everywhere in order to avoid establishing a rigid routine of only stopping on a sidewalk.

Walking into school or therapy or in the house, we would take a few steps and stop. Red light. Green light. Head shake or standing still meant “stop.” Head nod or moving forward meant “go.”

We generalized the start and stop to other activities:

We played with cars. Go. Stop.

We did it with balls. We would take turns throwing balls down the stairs, nodding at her when she could go.

On the swings. Wait for it… Go. Stop.

The whole routine reminded me of training our late Labrador to walk on a leash. With Missy, we learned that she was supposed to watch us for visual cues. If she looked to us as her leaders, she would be successful and not dart in front of cars. She was supposed to sit when I stopped and move when my left foot moved to walk forward. It took hours and months of training and practice, but Missy actually became a good leash walker.

Missy

I had to make the same commitment with Rachel.

Changing my mental state:

In addition to teaching Rachel in small steps to stay with us, we also had to learn a new way of being in public. Before, with her in danger of darting away, I tensed my muscles, clenched my jaw, my thoughts scrambled, and my heart pounded. “Just get in and get out,” was my M.O. Fear owned me.

In order to keep Rachel calm, though, I had to learn to be calm too. If I wanted her to take visual cues from me, I had to cue her to be focused and at ease. If I wanted to reach Rachel, I had to release fear’s grip on me.

Anxiety, in my opinion, is one of the compounding factors in autism. Rachel seemed anxious about everything. She feared the next bark of a dog, the next screech of tires, the next movement of someone nearby… At the same time, Mom feared the next bark of a dog because it would set Rachel off. Mom feared the next movement of a person because it might set Rachel off.

My focus was fear. Her focus was fear. But maybe she was getting some of her fear cues from Mom…

So, how could I expect her to watch me for cues when she was watching everything else? How could I expect her to be calm if I wasn’t modeling it myself?

I learned to take deep breaths and focus on enjoying the moment being with Rachel, not on getting some big task done. That meant a grocery store trip had to be about time with Rachel, not groceries.

I learned to focus on building my relationship with Rachel and to keep the goal in sight.

Since I mentioned Missy and dog training…

I also learned to watch the Dog Whisperer. I say this with a grin, but I have a deeper understanding of the importance of my own mental state after watching Ceasar’s patient, calm, assertive demeanor. Those same techniques he used to rehabilitate fearful or aggressive dogs–and the fearful, unbalanced humans in their lives–helped me to see the things I needed to change in myself in order to help Rachel.

For more interactive, therapeutic activities, see here for a preposition lesson and here for our lesson in bus etiquette.

Coming up next: Taking Rachel to the mall.

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Preposition lessons with Rachel.

by Jennifer Dyer

One of the many goals Rachel is working toward in speech therapy is understanding prepositions. For years, I’ve yearned to assist her with language, to use my career experience as a speech-language pathologist to help her, but I usually feel as useful as an empty tube of lipstick.

Today, though, I was able to do something that felt like speech therapy (to me) with her! Or at least I thought I was helping.

As always, things don’t turn out quite “normal” around here.

Since Rachel is highly visual, I thought I would pair the preposition word concepts with a picture card and model the correct usage for her using toys. I was trying to hit all the learning styles I could in one go: visual, tactile, auditory, verbal, and a 3-D representation (that last one is a term I’ve heard used by Kay Giesecke M.S. CCC-SLP).

Sounds like a great idea, yes?

In theory and when done correctly, yes.

But…

I used 1″ square cards from the Boardmaker program that featured a written word along with a simple picture representing each preposition. (See them in the pictures below.) Using some doll house furniture and a Mickey Mouse toy, we labeled one preposition at a time.

On was the easiest for her, so we started there. (See picture below.) I first modeled on by placing the card on the couch and Mickey on the “on” card. “On. Mickey is on the couch.”

I handed Mickey to Rachel. “Put Mickey on.” If she didn’t place Mickey in the right spot, I modeled it again and handed her Mickey to try again.

Rachel wasn’t happy, but she smacked Mickey onto the couch, so I thought … since, the on part went all right, I should keep going!

Yeah, y’all can probably hear the horror film music in the background and at least one of you might be screaming, “Don’t go there!”

But I did.

I threw all the prepositions I had in my arsenal at her. In, on, under, between, in front of, behind…

Rachel grabbed the couch and sat on it.

Then she sat on Mickey too.

And the word cards.

That should have clued me into her emotional state. She was telling me, “Too much, woman!”

But I didn’t listen. I grabbed the couch out from under her and trumped that by adding the doll house bunk beds. She sat on those too. And then hid in the closet, only peeking out so that she could make sure I would notice when she slammed the door shut again.

Yay … score one for mom.

My problem is I sometimes try to accomplish so much at once that I forget to notice the little things. I should have jumped for joy when Rachel got the concept of on. And I should have stopped there, at least for the moment. Perhaps I could have added one more concept, but sometimes it’s best to end earlier than planned with a positive result than to end up with her screaming in the closet.

Just in case you were wondering:

A few days later, we tried again with this set of tiny bears I bought at a dollar store 15 years ago and have used in therapy dozens of times.

But, I’d learned my lesson. I quit trying to be the fabled hare who wins the race with speed. Instead, I followed the path of the tortoise and used only the three prepositions assigned to me by Rachel’s behavioral therapist.

We worked for just 10 minutes. I incorporated only the toys pictured above plus a few more bears. I used the same methods, but much slower, on a small scale, and with much more success. Rachel did hide in the ball pit afterwards, but it she wasn’t upset, just tired.

I started with in only. I put the bear into the house. “The bear is in.” Then I handed her a bear of her own. “Put the bear in the house.” I pointed to cue her for the first few times. After she put the bear in twice, I stopped pointing.

I added on after a few more trials, using the same method. I worked with her using on by itself then added in. Then I randomly asked her to: “Put the bear on.” “Put the bear in.”

I added under, working on it by itself at first. Then I mixed in the other two. Since she had already worked on the concepts with her therapist, I was able to move quickly. If she hadn’t worked on the words, I would have drilled the concepts one at a time in different ways, perhaps using different props, but keeping with only one preposition in a mini session.

If you need picture cards like the ones I made above, I used PicMonkey.

 

 

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