In the time since I last wrote, Stephen has begun taking risperidone to try to calm his irritability and aggression. We've upped the dose per the doctor's instructions, but it doesn't seem to be helping...not really. At times he is loveable and precious, at others like a demon.
It is heartbreaking.
Here we have a child who knows how to surf the Internet by finding pages in the history, but cannot even begin to comprehend that he has to WAIT if the pages are loading slowly...a child who loves to hear Thomas stories and play with Thomas trains in an almost typical sense, yet cannot understand that he's going to his grandma's AFTER we eat instead of before...a child who loves to watch his own TV yet throws a tantrum if the OTHER TV is turned on at the "wrong" time.
There's depth there...but at the same time the smallest changes throw him into a whirlwind of screaming and crying and beating his head with his small hands.
I don't know what to do. This little boy is tearing our family to pieces, and none of it...NONE of it, is his fault. We march to the beat he devises - there is no other way. It is tiresome in the extreme to feel that autism dictates how our days and weeks and years will go. But it does. Everything must be sifted through the sieve of that detestable disease. I hate it more than I can possibly express here. I hate what it's doing to my husband - a funny and gentle man whose nerves are often left jangling after a day with Stephen. I hate what it's doing to my older son - the shining star whose bright smile and eyes make any day seem worth living...he has taken to writing in a journal, which is healthy, but still makes me sad for him. This isn't the life I had planned for him. And I hate what this is doing to me.
After a really bad afternoon, I asked my mom to take Stephen for the night, and she agreed. I feel bruised and numb, and already worried about what will happen when he comes home. It's that constant feeling of being on alert that is so exhausting.
So what does the future hold? It seems fraught with impossibilities. Put Stephen in a "home" of some sort? I cannot entertain that notion even vaguely. Medicate him more? Maybe. But we need guidance - which seems to be in scarce supply. How do we hold our family together under this kind of stress? I wish that I knew.
