A place for parents of special needs kids

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Living with someone with autism is not always easy. Heck, living with anyone is not always easy. My son has many limitations. Some he has placed on himself; some are placed on him because of how his brain and body function.

It is often difficult for those around him to know which of those limitations are a mere result of his mind taking over the matter, or if he is not really capable.

J has physical limitations. He has low muscle tone which make it hard for him to be a really physically active kid. Other kids don’t get this. They think he is lazy. Combine this with his communication struggles and it makes for very few friendships. We live in a very sports oriented town which is going to be hard for J, as he gets older. A lot of the kids pay J very little attention because they don’t see him the way we do. They see him as more of an outsider, which he really is, but it is not his fault. They don’t see him at soccer practice, or little league practice, or swim team practice. Out of sight, out of mind. And their parents don’t either so he is easily disregarded for group activities outside of school. It breaks my heart. Like, on a daily basis.

A few years ago, we tried t-ball. Not good. J didn’t want to go. He is not a fan of the heat and he was hot and sweaty within minutes of getting out on the sun soaked field. He would lay down on the ground. All he wanted to do was be the kid to catch the ball but he couldn’t be the ONLY kid who got to retrieve the ball so he would get so frustrated. This, as usual, caused the other kids and parents to look at him differently. Something I am hyper-sensitive to (if you couldn’t already tell this about me).

I have been told that team sports generally don’t go over too well with kids like J, which is why he now does Tae Kwon Do twice a week. He started in September and received his orange belt recently. He also did (on his request) gymnastics again this year. Heck, if he asks for some kind of physical activity, you better believe we will try to make it happen for him.

At Tae Kwon Do, the Masters test his limits every class! Sometimes it breaks my heart watching them push him but they do it with such love and with a ton of positive reinforcement, that he keeps pushing himself. I am so proud of how hard he works when he is there!

Of course, sometimes he can be lazy, because it is so much EASIER for him. Sometimes we let him be lazy because it is easier for us. If J doesn’t want to do something, it can be hard to make him do it. You can’t just coax him into it. Trying to talk your way into getting him to do something can be a real struggle. And, in the end, you would have wasted a ton of his energy, and your own, and he STILL won’t do it. If he sees other kids doing something, he may give it a try. As a matter of fact, that is how we got him to ride his bike a few years ago. Now, he is a pro. But, he won’t try a bike with no training wheels. He knows his limitations. We push, he pulls away and we get absolutely nowhere.

A person with sensory integration issues is very aware of how much they can take of certain environments. J is sensory seeking, but he can also avoid certain situations. This year was the first year he actually wanted to go see the fireworks. We were so proud of him that he tested his limits. It was rough for the first few minutes, but, we had brought headphones and, once he realized he was safe and it was just noise, he was so happy to watch the show. A big win for all of us. We were so proud of him and could tell that he was proud of himself too.

There are times though, where, as his parents, we HAVE to push his limits. Right now, we are going through a struggle. J is enrolled in a camp, Harbor Haven, which is for high functioning special needs kids. We thought J would absolutely love this! Well, he doesn’t. Or, at least he doesn’t seem to. He cries when I drop him off, something that hasn’t happened for years! But, this is the first new place he has gone for years. He has been in his school for two years now so he is comfortable going there. Any extra curricular activities he does, I do not leave while he is in class. Also, they are for much shorter periods of time. This is from 8:45 until 3:45. A long day. But he is getting so much out of it. He gets social skills four times a week; he gets speech once a week; he gets OT once a week. He also gets a lot of activities: tennis, arts & crafts, karate, drama, swim every day, soccer, ping pong…and lots more. So, why isn’t he enjoying it?

Watching him cry as they take him away from me every morning is pushing my limits as to how much my heart can take.

I can say though, that I have seen J’s limits grow broader and broader as he matures. My hope, as his mom, is that he continues to push his limits because that is how we learn and gain new experiences and insights. Everything with Spectrum kids is very black and white, but life is not that way. In order to excel, he must be able to adapt to certain situations. He must push his boundaries to see all that he is capable of. He must do this not only for himself, but for the world to see his true potential. I know there will be so many bumps in his road. It’s the self-imposed bumps that I hope he can get through. I hope he can see them coming a mile away and navigate his way through them. Whether it be through self-regulation or by just plain old common sense. After all, isn’t it my job to prepare him for as much of that as possible. Isn’t it my honor to play that role? You bet it is.



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