Highly Functioning Autistic Kid

Let me begin by re iterating that I do not write for sympathy or help, but to provide clarity and space for my tumultuous mind. Its a wild, frenetic land in the recesses of my medulla.

This week has been a mountain of a climb, “no rest for the wicked”, so they say and as a child I was pretty wicked, to all who cared for me, from parents, family and hospital staff. But I digress, remember its a frenetic place I am reaching out from to even verbalize the shit that goes on in my head.

I write today from my perspective, my families perspective and the perspective of Kid 1 (K1). K1 as you may remember or not even care, was diagnosed a year ago with high functioning autism or Asperger’s. Although he is not severely affected, he definitely has traits and tendencies that smack him on that imaginary line of whatever it is..

Sometimes I wonder whether its a good thing we know or not? Yet, it is a very bumpy road, one I often want to get off, to take a smoother path and I am sure he does also. A path where he does his homework without screaming daily (he is now 8),  a path where he does not constantly harass his brothers and scream at them, a path that is not always black and white, a path that is not literal but has some bend, a place where he can sit still, or make wild noise, where he can cope with activities, changes in routine, school parties and holidays without imploding and losing all control of his behavior and screaming he hates us.

It is because he gets over stimulated and I have learnt his brain scrambles and he cannot calm it down. Life would be calmer, less noisy and explosive, I would not internally dread every time we go out, or go places as I am never sure which kid I will have? The sullen monotone, willful, stubborn, unresponsive child, or the wild hyperactive kid who bounces all over the place shouting in faces and using baby voices, or I may get K1 where I can see him through the forest of his mind, that amazingly brave, strong, powerful kid who really will take over the world.

My greatest fear is that I parent him incorrectly, as my strategies to help him are very different to K2 and K3. Sometimes I cannot even get to parenting the other two as I am spending all my time managing and helping my eldest. Am I failing, I feel like I am , but I remember that I love them so much and I too am a mentally flawed human, who too deals with her own issues on a daily basis, so I am truly doing the very best I can , all the time. Yes I openly cry a lot, but I think its good for them to understand emotion and that I too need help and love. I have always tried to parent with love, transparency, kindness and honesty.

The hardest thing we deal with as a family is the fact that K1 does not seem different or have this alternative way of learning, unless you are with him 24/7. It is like being beaten over the head with a sledgehammer, it never leaves or goes away it is always there to be dealt with. Learning that people do not want to be touched in the face and that homework needs to be done, that running around at school, because you feel like it, is not what the teacher requires. That he forgets his work every day and we have to drive back to school everyday to get it. Yes he genuinely does not remember, repeatedly, its traits of his HFA. People think he is naughty, insolent, he is always at the Principals office, I get letters home, phone calls about behavior, (its him coping with the demands of his day, its busy and loud and full of stimulus, of course he implodes).

This week, we have had one meeting with the school, I have driven back 3 times to school to get home work, he actually forgot it a total of 4 times, he decided that he would not do hockey (there is never any convincing) he got out of the pool during his swimming lesson as he had had enough, he lost recess for two days at school for something that was not his fault , as the school seems to like to jump to the conclusion, that it must be he who is responsible, he was banned from the school garden because he decided that running and jumping over a bench was a far more exciting thing to do rather than listen to the teacher ( I may have to mildly agree with him here). This has all happened in a mere 5 days and this does not include all the little things that happen. Thank Fuck for the weekend ..

The thing is I totally understand everything he does, yes homework sucks and I forget things, listening to a teacher is not the most exciting thing about a day, yes a kid is a “ass hole” if they trip you over and sometimes you really do not want to play games or swim, so why should you? As adults we do not?!

I am not articulate enough to fully describe what our home life is like, its explosive, we wade through parent hood rather than skip. The little two are frequently waiting for their turn to be seen or heard. It is tough and wondrous and I will not lie, sometimes I do wish he were different and easier, but that is my selfishness and desire for a calmer life. Truly, though I am in awe of him, his drive, passion and ability, he is 100 x smarter than I could ever dream to be. I am exhausted by him and I am scared I will never be the parent he needs me to be. I am reaching out for guidance and help and reading as much as I can. We are looking for groups of parents for support. Its harder because he is high functioning, we are not given help or advice, because he is gifted the school fail to recognize his Asperger traits and coping mechanisms, our medical insurance will not pay for therapy, because he is not fully autistic, but he still needs some degree of Applied Behavior Analysis therapy, to help him cope with the demands, routines and sociability of life.

It saddens me, that with the rigorous, normalcy of life, that is peddled to our kids, we fail to see the wondrous differences. K1 is a beautiful artist, a natural with music, his physicality for sport is limitless, he can add huge numbers in his head and he sees beyond the regular. He is quick to see the beauty in nature and to care for the weakness in others. He is articulate and dexterous, he can build Lego like no other, with patience and tenacity. But school fails to see the way we can use these skills in a multitude of arenas and to nurture them. They see him as a thorn in their side, he slows them down. Maybe I should move him to a smaller, private school, but he loves his school and his friends and he knows the routine.

I am not really sure what I am trying to share here, and I am sure no one really gives a shit. But we do, I do, if any part of this helps another realize,  others struggle too, that we all need help and no one is perfect, but what the fuck is perfect? who wrote that manual ? Clearly not me and my family. But if you need to share anything I am here. I am also looking for help and advice if you have any to share?

I will continue to love and learn from my son, I clearly will fuck him up, as I feel all of us were a little fucked up by our parents and in the words of Dr House ” No parent is perfect, we all, ultimately fuck our children up “. Me, I just started early with my genetics.


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