I’m sure that most parents of kids with special needs can identify with this – that feeling of guilty, or responsibility for the problems your child has.
I am no different. I have tendencies that are somewhat obsessive and compulsive but I wouldn’t exactly say I’m OCD. I do have attention deficit issues of my own.
What I see in K-Oz, though, riddles me with a guilt that I try to push away and tamp down into the dark recesses of my own thoughts. It is as though he has taken those mild OCD tendencies I have, and the attention decificit issues I deal with and ramped them up to warp speed. He has multiplied them into the beasts that plague him constantly.
I feel guilty. I see some of my own characteristics – magnified – in him and realize that it is probably my gene pool that has brought these things to him.
When K-Oz first started exhibiting his TS symptoms, I did research about it and discovered that stuttering is a form of TS – a cousin of sorts. My father and brother both stutter – so the realization hit me that what was happening to my child probably came from me.
As I watched him, I saw my own eccentricities visited upon him. I have a difficult time getting rid of things. My brain tells me I might need that item, so it must be saved for the possibility it might be needed. That’s why I am buried in clutter. I look at things and my brain can’t sort them or understand what must be done with them (as in put them away, pick them up, get rid of them), instead my mind goes into an endless loop of “what to do? that makes no sense, it’s easier to not do it than try to figure it out” which leaves me unable to complete that particular task.
The obsessive/compulsive side of me will roll something around in my head and work it over in my mind until I’ve exhausted it and am ready to let it go. The compulsive side will tell me that when I get an idea, I must run with it at that exact moment. Now these OCD issues are mild for me – I easily overcome them, but they exist.
For K-Oz – mild on any of these counts is not the case.
What I see in my son is this: Hoarding (“all of these things – even the pieces of trash – may be important and necessary – I can’t let them go”), distraction (“I forgot what I was supposed to be doing”), obsession and compulsion (“there is a flying bug somewhere here – I must watch for it,” and “I cannot pass the couch without rubbing my hands x number of times on the couch, shuffling my feet x number of times on the floor, rinse and repeat until my brain is satisfied and will allow me to pass”) and many other issues.
I feel guilty. I feel as though the struggles my son is dealing with – the things that plague him – are indeed, my fault.
How does a parent deal with that sense of guilt? How does the parent of a child with a severe disability – one that might even be life-threatening – deal with the knowledge or belief that they are responsible for that which hurts their child?
I wish I knew the answer, but all that I can offer is my own experience – I deal with it one day, one event, one incident at a time. That’s my only option. I can’t beat myself up – as much as I would like to. I can’t change things. I can only help my son work through all of this and try to find solutions and ways to deal with all of it.
That’s all I know to do.