Joey's Story

People sometimes ask me, "Why is Joey like that?" "Whats wrong with him?"

There is noting WRONG with him. To him though, the world around him does not feel right.

Some people have told me, without saying so directly, that he just needs more discipline. They have told me, he seems like a normal 3 year old to them, he just isn't talking. I have tried to explain to them what I am writing here, but I can sense they don't understand.

Once when trying to explain what a sensory processing disorder was to somebody, they told me "of course you think he's a good kid. he's your son" as if they thought I was just making excuses for him. I wish there was just one other person besides me who could see what an amazing and sweet child he is despite these struggles. Some days I get frustrated too.. it would be nice if there was someone my son could turn to when my patience was not strong enough to overcome my frustration. Maybe then I wouldn't feel so guilty when I have a bad day.

As for it being normal toddler behavior - they are right. He's a toddler after all, so he responds to frustration the way a toddler would. What people don't seem to understand is that what is frustrating him doesn't frustrate most children. This causes more frequent tantrums.

So what does the world feel like to Joey?

Stanley Greenspan, the author of "The Challenging Child" (1995) has an insightful analogy to help us understand what people experience when they can not effectively process, or interpret, sensory input.

He describes it this way:

"Imagine driving a car that isn't working well. When you step on the gas the car sometimes lurches forward and sometimes doesn't respond. When you blow the horn it sounds blaring. The brakes sometimes slow the car, but not always. The blinkers work occasionally, the steering is erratic, and the speedometer is inaccurate. You are engaged in a constant struggle to keep the car on the road, and it is difficult to concentrate on anything else."

Children learn through their senses. There are 7 senses. You learned about 5 of them in school - sight, sound, taste, feel, and smell. There is also the vestibular (balance) and proprioceptive senses (feeling where you are in relation to space - such as feeling your arm over your head when you raise your hand). When one or some of these senses are not working properly it affects learning and behavior.

Joey has proprioceptive dysfunction. This would be why he was banging his head when he was 15 months old against the wall or floor. This would be why he intentionally crashed into people or pushes his body against them. Why he will spin in circles for long periods of time. He is seeking that proprioceptive input. Then there are things he avoids too, he gets scared. He has gotten past a lot of his tactile defensiveness though - such as grass, sand, and water (which he now loves) and playdoh. He is still sensitive to touch though. I guess you could say he's very ticklish, and doenst like to be tickled. you cant go anywhere near his ears or mouth, or cut or brush his hair. We finally got him to be okay with diaper changes, and that was a huge step for us, and have found a solution for brushing his teeth. Before that we had to pin him down. That goes against my nature as a parent, but it would be unhealthy not to brush his teeth so we worked hard to find another solution and did what we had to do in the meantime.

Joey's speech is improving more lately as well. Sign language has helped a lot. His therapists have been wonderful. For a long time I held onto the hope that he would outgrow this. His therapists say he is learning very quickly for kids with the same diagnosis. However, I watch his developmental age and real age grow further and further apart. When it began we had a 15 month old that was more like a 12 month old. Then a 2 year old that was like a 15 month old. Now we have a 3 year old that is like an 18 month old. It's like the gap just gets bigger and bigger even though he is making progress. I am working on dealing with the fact that I have to stop expecting him to outgrow this. I need to accept it for what it is and be ready to commit to the fact that this may be something he struggles with his whole life. This is hard for me. I don't want to do this anymore. I just want him to be like other kids his age. Those are real feelings. As terrible as it sounds, I'm just being honest.

My son though is one of the sweetest children you will ever meet - but you have to give him a chance and look past all of what he is up against. Sadly, I don't think many people have given him that chance. That's where my real guilt come from. There is no one to be there for him when I fail.

If you want to understand more, try visiting this informative website:
http://www.sensory-processing-disorder.com