My Quirky Boy

A year ago we had Fin evaluated to see if he was eligible to participate in a study of kids on the spectrum. It is a minimum 5 year study, and the focus of it is mutli part. They follow the child, their development, therapy, and diagnosis. From what we understand quite a few participants in the study have had their diagnosis changed. They also interview the families and follow their experiences, struggles, and successes with having a child that is on the spectrum. It is yet to be determined, but there potentially is also going to be a genetic part that could involve some medical testing. Besides feeling that it will benefit the Autism community as a whole, Fin gets a complete assessment annually.

Last weekend we took him for the assessment. A year ago he was unbelievable, 6 hours he went at 2 years old. There was some question of his diagnosis until they did the home visit. This year we were unsure if it was going to be the same, or different. He remember the place, and also the girl who did the assessment. It is incredible to watch.

It is hard work, and I am exhausted after it is all over. It is a situation where he is at his peak. He is one one one with an adult who understands him. They won’t touch, or infringe upon him in any other way that he find overwhelming. Plus it is work for his noggin. He seems almost tireless in going through all of it. Eventually he does shut down to make it end, but I wonder if it is because he gets a little bored, or if he really does get tired. The team there was trying to decide if they were going to give him the assessments for a child 5 years old, but in the end they decided against it.

The second part of the participation is a home visit to see the family, and the child in their own space to see their functionality, and challenges. That was yesterday. It is the same person from last year, we really like her. She sees a lot of families with spectrum kids, and through conversation I truly feel like her understanding and knowledge base of Autism in general is pretty generous.

I sometimes think that maybe he isn’t a spectrum kid. Not because of denial, but because he is just our reality. We live day in and day out with who he is, and what he does. That is just our life. I know it is harder than the average household. But I bet we also laugh a little more, and see some things he does that are in our mind cooler than the average kid. It swings in the other direction, we deal with some behavior that is certainly left of center, but it kind of fits who we are as parents.

After yesterday when an outsider comes here who is not a person who loves Fin, (which is not often), it represents to us how different he is. No matter how subtle he tries to make it. Fin understands he is different. He does not care that he is different, but he knows that other people care. He has become a master at hiding his repetitive, and OCD behavior under the guise of something else. He knows that certain things ore not okay, the persistent and uncontrollable nose picking, the fact that he is almost 4 and still drools like an infant, when he is in a heightened state of agitation he wrings his hands over and over, and that he is hypo sensitive with physical input and will jump over and over and over on a hard floor to get the sensory stimulation.

Yesterday he was walking around in circles over, and over, and over around a toy. The visitor sees this, and talks to us about it. She is is also well versed enough to see the smoke screens he puts up in his much more controlled play. In the end she tells us what everyone else does. He is spectrum, and highly intelligent. Intelligent enough to know he is different, and to try in his own way to mask his behavior that we will try to curb. We talk about school, how the school system in general has no idea how to handle a child like Fin, how no one takes notice because he is never a “problem”.

How do you parent a child like him? How do I foster his great thirst for learning past the point where I am capable of teaching him? Now it is easy, I can teach him to read, count, add and subtract. I can teach him about the planets, how to measure, the different kinds of fire trucks and dinosaurs. Soon I can see where what he needs to learn is far beyond where I can take him. Already his school is ill equip to help him.

His teacher came to me and said, “I didn’t know Fin could read”. She goes on to explain that Fin hands out the milk at snack time. She shows him the list of kids names, and he passes out the milk, correctly every time, even though the list changes. In one half second I knew exactly what was happening. He knows every cubbie in his classroom, and who belongs to each one. Every cubbie has a name plate, and he has memorized the letters. All he has to do is look at the list and he knows by the order of the letters who the name belongs to. They have no idea at his school, a class of SPED kids, and supposedly other spectrum kids, that this is what is happening.

Will we ever find the place for him that will understand, and take the time to KNOW him to be able to teach him? The older he gets, the more I believe that it is going to take the schools at LEAST 20 years to get it, and by then kids like Fin will be such a huge percentage of their population. The idea of what to do about his education eats at me, I lie in bed at night thinking about it. It is SO FRUSTRATING, it should be so simple. But nothing about our journey with him has been simple. That in itself is just so FIN.