When Others Don’t See What You See

We are about five weeks into the school year and it’s becoming more and more apparent to me that many of the people Max comes into contact with throughout his day just don’t see in him what we see in him. We see a child who has had to scratch out a place for himself from day one. His survival, his success was never a given but rather a daily fight that Max in many aspects fought by himself every day. We could be there with him but he was the one who physically did it all, survived the surgeries, the countless tests and most importantly the doctors! There were (and are) ultimately only two people who decided Max’s future – him and God.

Because Max was not physically strong he developed other skills – he spoke his first words at 9 months yet he didn’t sit up on his own until his first birthday. He could put sentences together at 15 months yet he didn’t walk until he was 21 months old. Max has been different by necessity from the beginning, not just medically but also emotionally and I really think others sometimes have problems with these “differences”. They find it problematic that he needs to understand the why and how of things and so asks a gazillion questions. They prefer the child who takes in what you tell them and then spits it back out at you. Period. End of sentence. The child who delves deeper causes a bottleneck in the “flow” of the classroom.

Because of this I know that when we go into school in a few weeks all hell will probably break loose during Max’s IEP (Individualized Education Plan). Have I ever mentioned I detest IEPs? Without a doubt the IEP process is one of the worst aspects of parenting a child who is different in any way. Why is it that society is so wrapped up in the “norm” and anything short of that causes them problems? When we go to these meetings I usually bring a picture of Max in his early days just hours post open heart surgery, my goal is not to “gross out” the teachers, psychologist, aides, etc. but rather to drive home to them that no matter what they think Max has made more progress that the entirety of his classmates put together and then some. I want them to know that when they doubt Max and his abilities they are nothing short of dead wrong. This child is different -- he is not stupid, he is not incapable. Yes, he is strong willed and very determined but he has had to be and it is not automatically a negative to have a strong personality (he is my son after all).

During the IEP I will have to fight like crazy to make sure that Max gets only the services he needs not the ones that are easiest for the school. He doesn’t need to be pulled out three times a day to be taught down to, he reads at a middle school level why in God’s name are you pulling him out for resource reading? Oh, right it’s easier for the teacher to have one less student in the classroom. I am certain many of them find me to be “one of those mothers” who just doesn’t get that their kid isn’t perfect, as if the 35+ surgeries didn’t already teach me that, but I am not. I am not the “hysterical mother” I am merely realistic that Max is what he is, for good or for bad. Why can’t they just see the good as well as their perceived bad? Sometimes this is all so hard…….