It’s when we’re at home that my son, Taz, has problems. If he is not continually and directly engaged by an adult (or a television if we’re too exhausted), he starts bumping into walls, crashing into and climbing on furniture, doing headstands on the couch, running, tripping, yelling, and throwing things.
On the other hand, if we go on a three hour hike in the wilderness, he is calm and focused the whole time. He can balance on stepping stones to cross a stream without getting wet. He thinks of games to play in the dirt, and can play them for multiple minutes.
It’s when we’re at home that I have problems, too. If there’s a child who is bumping, crashing, climbing, headstanding, running, tripping, yelling, and throwing - I lose it. I need a certain sense of order, at least a little bit. I need the people around me to not be continually injuring themselves. I need occasional moments of peace and quiet.
Sometimes I fantasize about living in the wilderness, like where we hike, or maybe on a ranch. I could open the back door and nudge Taz outside anytime he started bouncing off the walls. He could wander and explore, and I could watch him from the kitchen window. All his needs (and mine) would easily be met if we lived on a ranch.
In the real world, parenting Taz is extremely hard, but I don’t know if he really has special needs. From the time he was born I suspected something was different about him. He was absolutely active alert (as described by Linda S. Budd) - he did the commando crawl after we brought him home from the NICU when he was only a week old. He was most definitely high need (as described by Dr. Sears) – he wouldn’t (and still doesn’t) tolerate being left alone even briefly. He was extremely needy, yes, but he was not... disabled. Sure, he almost never slept and was constantly injuring himself, but according to the milestone charts and the pediatrician’s evaluation he was developmentally on track.
So why was it so amazingly difficult to parent him? Why was he so unhappy? Why was I feeling like such a failure?
I tried every method in every parenting book for creating stability in our family, and yet, nothing was working. Our lives continued to feel upside-down, as they had since the moment of Taz’s birth.
I began to look inward. The other moms I knew did not seem to be struggling the way I was, and no one else seemed to think anything was unusual about my son, or if they did, they didn’t say so. Maybe it was me who had the special needs. Maybe I was the one who was disabled. Maybe I did not have the skills to be a parent at all.
I researched obsessively. I alternated between trying to find other children who sounded like my son and trying to find other parents who shared my feelings of incompetence. I considered my history. I thought about my own difficulties growing up.
One day as I was researching I stumbled upon some information about Asperger’s Syndrome. I considered the possibility that Taz had Asperger’s only briefly because, well, he was three. I figured that three year olds are generally pretty weird when compared to people with fully formed brains, and how could I really know how much was abnormal and how much was just three?
I decided not to pursue a diagnosis for him, but realized that the Asperger’s criteria applied to me. I tried it on - I proclaimed myself “a mom with Asperger’s.” It seemed to really fit and I finally had an explanation for the difficulties I had been having. It also allowed me to accept and embrace my parenting problems as my own.
I still don’t know, though. Sometimes I think maybe this is all in my head. I really don’t know what’s normal and what’s not, and even if Taz really is atypical I don’t know if I’ll ever be ready to pursue a diagnosis for him. I don’t want the experts to tell me what he should be like because even though parenting him is really hard, a part of me still believes he is perfect just the way he is. He certainly would be... if we lived on a ranch.
Wow, i found this post very interesting, i didn't expect it to go where it did. when i first read it, i was like ahhhh my daughter is the same way, and i feel much of what you feel. she is not disabled, and has not been diagnosed with anything by a doctor and she has seen one dev. ped. however she does see an OT for sensory processing disorder (not sure if you looked into this) as i learned about it, i realized i have spd as well.ReplyDelete
Nail, meet head. I could have written your post, almost word for word. Right down to "sometimes I think maybe this is all in my head".ReplyDelete
Even with a diagnosis, however, I will still think my daughter is perfect because she will still be her own version of perfect. A diagnosis will not change that for me. What it would do is help me to understand what her own brand of perfect is, so that I can be the best mother I can be for her.
And let me know if you get any leads on a ranch. Maybe we could split the property between our families.
Yes I think we're both strong candidates for SPD. We do a lot of the sensory integration exercises throughout the day, and they do seem to help, but things are still very challenging. I guess he does have "special needs" in a way - for example, he's the only child (as far as I can tell) in his gymnastics class that does MUCH better when the music is off. I feel bad about asking them to turn it off just for my son, and this is the kind of thing I struggle with. His needs are, and always have been, very nebulous.ReplyDelete
Ah ... the miracle of heredity. When I heard about Asperger's (the first time someone took a stab at evaluating my older daughter), I realized the diagnosis would've fit me like the proverbial hand in the glove, if it had been on the table back in the day. I admire your having the courage to embrace the diagnosis for yourself, but not worry about getting a label for your child.ReplyDelete
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