Hello, I’m Josh’s mother, Carol. Perhaps, one of the most common questions I get asked is: How do you know what Josh wants?
Josh and I interact in an almost invisible manner. Body language can be remarkably effective. It can be, literally, as quick as the blink of an eye.
The Walk With Me blog tells Josh’s story from birth to artist, but artist is only a small part of who he is. Under this page, I want to talk about communication.
When a child has a learning disability, at least here in Illinois, the child enters into a program that, at least at that time, was called Zero to Three Early Intervention. For Josh, that program came through Easter Seals.
The first three years, an occupational therapist came to the house. Josh, to this day, considers her one of his closest friends. I can guarantee if she walked up to him unexpectedly, he would get so emotional over seeing her, he would cry. He truly adores her. Her name is Chris.
Chris would play with him. She would devise items to help him. She would give me ideas in what was needed at whatever stage of development he was at. She kept me grounded.
Through her, I learned that muscle patterning is powerful. I don’t know how many hours I spent putting Josh on his hands and knees and helping him go through the motion of crawling. I don’t know exactly what that does to the brain, but helping Josh do the things that most babies do normally, helped develop pathways in Josh’s brain.
At the park, I would hold him on my lap so he could feel what the merry-go-round felt like. As much as I hate being up high, I would put him over my shoulder and take him to the top of the slipper slide. I would put him on my lap and down we’d go. Hearing him laugh made the whole ordeal worth it.
When you have a child with a disability, it changes the way you think. I don’t spend a lot of time, or energy, worrying about not being able to do something. I think of ways we can.
Josh can’t talk. Let me re-define that. He’s extremely vocal. But very seldom is he able to make the sounds resemble the words he’s trying to say. At odd times, when you least expect it, he’ll say something so crystal clear, the word stops you in your tracks. You turn to him and ask him: What did you say? And he looks at you with those beautiful, clear eyes, and there isn’t a prayer of getting him to repeat the sound.
Sometimes, he takes that in good humor. Most often he gives you a look that lets you know you missed it and too bad. That’s all he’s got.
Anything that we could do to help Josh experience the normal development patterns, we did. I would be happy to answer specific questions or explain anything I say here in more depth. You only have to ask.
When Josh turned three, the Zero to Three program stopped, and Josh was then expected to go to school. Again, we got his early education from Easter Seals. Easter Seals is an organization that is dear to my heart. I would drive Josh to school, a one-way trip of about thirty miles, wheel him into the classroom, and feel like I had a warm blanket wrapped around my soul.
I was so alone during those years. Isolated in so many ways. The Walk With Me blog details Josh’s early years far better than I can address on this one. But I was physically, emotionally, and mentally stressed. I have no word to show how hard those years were to somebody who hasn’t gone through it.
Josh didn’t want to go to Easter Seals. He would start screaming (I’m sure most people would define what he did as crying, but it was louder, and longer than a normal tantrum.) the minute we left the house he would still be crying when we got to Easter Seals.
I’d say hello to everybody as I wheeled him through the reception area. I greeted the teacher and aide as I wheeled Josh into the classroom. I’d watch as the aide wheeled Josh into the bathroom for time out. And then I’d leave.
Leaving a child as upset as Josh was may rank in the top five hardest things I’ve had to do with Josh. He was my child. He was disabled. And, he was non-verbal. Only my trust of the people working at Easter Seals allowed me to do what I needed to do. And that was let my son go through the program.
A funny thing happened. Once Josh learned that crying and screaming wouldn’t get him what he wanted, which was to stay at home, he started to cooperate with the teacher. (Her name is Debbie, and he puts her right next to Chris in his heart. He adores them both)
I remember, very clearly, when he stopped crying when he went to school. It was the day he was empowered with a very important tool. He learned how to say: yes and no.
Communication. It’s such a powerful tool. The simple ability to answer questions with a yes and no response gave Josh the confidence he needed. He could be heard. And our search for a voice began.