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Managing Expectations of a Special Needs Child

We all have grandiose expectations for ourselves and those around us. When you have a special needs child, you slowly learn to adjust those expectations quite a bit. The upside to this is that when your child meets your expectation, it is considered a big win. If he or she EXCEEDS it, well, that’s a triumph!

When you have a child who looks typical, dresses typically, people’s expectations are set higher. The thing with PDD-NOS is that it is the gray area of ASD. Which is funny because anyone who knows anyone with ASD knows that there IS no gray area.

J is in a regular classroom, albeit an inclusion classroom. BUT, he has his own aide which immediately polarizes him from his typical peers.

His teachers had their own set of expectations for him and they were kind enough to be patient with him, and with us. They made modifications throughout the school year. But even his report card has a category of “Exceeds expectations”. Fortunately, J is a smart kid. He is an above average reader; loves math and science; enjoys music; and a whiz at any kind of technology. The thing with ADHD though, is that he lacks focus in areas that are not of interest to him but HYPER-focuses on things that he really enjoys and then you can’t break him away from it. I am sure a lot of you are familiar with this cycle.

It is the expectations of his peers and their parents that can be trying. J’s main issue at present are his social skills. And that is a big one. Kids cannot understand why he is the way he is or why he can’t express himself, or why he expresses himself so strangely. They think he is very funny. When I asked some of his classmates once why they thought he was funny, a few of them told me that it’s because sometimes he makes funny noises and that he hops up and down and “does this” [insert flapping hands here]. I wanted to cry when they did this. Sure, it’s funny to them now but at some point they are going to wonder why he does that all the time, or worse, ridicule him for it. We already had an instance this school year where I watched three 5th grade boys mock him. Unfortunately, the way the situations was handled by the powers-that-be was less than stellar. On the plus side, I never saw any behavior like that again. But, I am not always with J and he is unaware of when he is being made fun of. Bullying is a BIG issue and I don’t want my son to be the victim of it. So, I expect his school to look out for these situations, which is a little bit easier because J’s aide is with him in class and at lunch and at recess. My expectation is that the school be mindful of the possibilities for ridicule and that they take the precautionary steps to ensure J is not in harm’s way. I also expected that the behaviorist and the speech therapist explain bullying to J in a way he can understand and absorb. I was lucky that they were receptive of this but to what end. Are my expectations too high?

How do you tell a young child why his peer is so very different? Is this something the professionals should explain to them? Should I be explaining it?

As far as other parents, notably moms go, I am all about full disclosure so I make a point to tell some of the parents more about J, hoping that they will explain it to their own kids. Have they done this? I can’t be sure because certain kids still avoid him or look at him funny when he reacts a certain way or if he doesn’t respond to them. This is one of those times where I wish I knew what to do. For J’s sake, and for my own because it pains me so much when J approaches another child, seeks him or her out, only to be ignored. Which is considered completely acceptable, for some unknown reason. Maybe the other parents don’t know what to say? Maybe I should write a “How to Deal with J” handbook!! What I do ask of these moms, is to teach their children compassion. I have to tell you this does not seem like an unreasonable request, yet, I have seen many moms turn a blind eye when their child ignores J. J is unaware most of the time, but I am not. J will now more persistently approach a child who is trying to ignore him but he does not know when to quit. He does not know that child is deliberately avoiding him so he keeps going which only annoys the child more, which J will not pick up on. Watching him navigate this learning curve, this very steep learning curve as he has so much ground to cover that these other kids have already known for a few years, is difficult to watch. My job, as his mom and his advocate, is to let him fall, support him along the way, and pick up the pieces when is through. I cannot make other people do what I want them to do. All I can do is teach my children to be compassionate people.

J’s peers also have an expectation of him. They expect him to be kind, to be part of their classroom group dynamic and they expect him to communicate what he needs and to communicate back to them when they speak to him. For most typical kids, this is not an unreasonable expectation. But, for J, this is asking a lot. And why should he not be expected to do the same things all the other kids are expected to do? I know the reason why, and so do J’s teachers, but how do you explain it to other children?

I find that the girls are much more patient and kind to J. I have been told by parents of older PDD kids that the girls seem to like these boys as they grow older. Who knows? Maybe it’s inherent in us women to always look for a guy with communication problems!!

I have seen a ton of growth from J this school year. He is now really seeking out relationships with other kids. He still is struggling with maintaining conversation, staying on topic and making eye contact consistently. But he is so much closer to that now than he has ever been before. I cannot thank Jackson’s speech teacher and his aide enough for all the hard work they have put in on this skill with J.

I have learned that my expectations do not always have a place in J’s world and that they need to be adjusted along the way. Like J, I have a steep learning curve too.



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