Since my last entry, we have been through hell.
Two months ago Stephen turned thirteen. In the ensuing days it has become clear to all concerned that Stephen has begun going through puberty, and this “rite of passage” is a nightmare for our family. The “temper tantrums” I mentioned two months ago have escalated into brutal meltdowns – crying, screaming, stomping, pulling hair…and most heartbreaking of all, hitting his own head with his hands until he cries in pain. Unless you’ve been through this, or seen something similar, you may not understand. I can’t find the words to express how devastating it is to know that your child in such emotional pain that he is compelled to cause himself physical pain.
It is awful and horrible and it shatters our heart and souls…on those evenings when the meltdowns go full bore, the walls begin to close in, the very air is hard to breathe, and peace and hope and joy seem impossible. As I wrote in my journal recently: “Happiness is for other people; not for us.” Twice I have nearly wrestled Stephen into the car, thinking wildly that I would drive him to a hospital and storm into the ER: “TAKE THIS CHILD AND FOR GOD’S SAKE SOMEONE DO SOMETHING.” David’s calming hand on my shoulder has stopped me, and he has been able to get Stephen settled, and life goes on, after a fashion. We walk on eggshells. We consider EVERYTHING before we do it. Will this bother him? Are we ready to deal with that or this or the other thing? It's no way to live.
I have continued my decade-long quest to find help – and we are finally meeting with some success: call backs, appointments set, in-home services coming soon – and I am thankful, of course. In the end, though, there’s always the underlying pain, the knowledge that in some ways he’s never going to get better, he’ll always be a big, overgrown toddler..
Stephen also has developed severe OCD symptoms. Every little change bothers him. EVERY LITTLE CHANGE.
My idea of what goes on in Stephen's poor head:
Daddy takes his glasses off to clean them but no NO NO. Daddy WEARS his glasses and I must stand here and fret and possibly cry until he puts them back on.
Daddy is outside cutting grass? I can SEE him but he is not HERE where I can keep track of him so NO NO NOOOOOO. I will stand at the window and ask 'Is Daddy?' every ten seconds.
The paper towel is hanging down off the roll. That is not how it goes. I will stand across the room and point and grunt and squeal at Mama until she rolls it back up.
My pants are wet but they are the pants I have had on all day and I do not want to change. Wet is bad but change is worse. Mama's pictures about dirty wet clothes make sense but change is BAD and I cannot change. It hurts my head. I will hit my head because the world hurts me and my body feels different and I don't like it.
Mama walked downstairs. IS SHE GONE? I know 'be right back' but I don't like 'be right back.' I like everybody where they belong.
And I could give a hundred more examples. We've always known autism was bad. We've always had struggles. But nothing could have prepared us for this.
We have an appointment with a new doctor in a week. We hope to talk about changes/additions in meds and possibly get Stephen some help as we live through this harrowing time. In my head, I think of it as "The Dark Time." The darkest yet.
