Monday, September 29, 2008

We're all over the spectrum!

The other day, my husband said something that really made me think. It was something a parent should never have to say about his child, and something that most of us would not say aloud even if we felt it. The fact that I know he's being entirely honest, and not malicious in saying it makes it even worse. it's like he's resigned himself to living like this with jaymes... Anyway, what he said...

"At this point, I have nothing left in me for Jaymes. I don't know how you are still doing it, how you can stand the tantrums and feel anything for him. I love him, but I am just so over this Jaymes and i can't take it anymore."

You know, there was a time I'd have gotten all indignant and really tore him up for saying it. I rarely stop to think that I am not the only one affected by Jaymes' behavioral issues, and that it might have some impact on Jason as well. No, I'm not perfect, and these thoughts have to be helped along by comments such as the above.

It's like a switch in Jaymes' brain just got flipped, like something in there just broke. He's so different. he's not himself anymore at all. He screams and cries all day long, but he no longer tells us what he wants. I can no longer understand much of his talking. He doesn't give kisses, tell me where his body parts are, talk to his horsie. It's a huge fight to get Jaymes strapped into a car seat. I can no longer get him in a stroller or the cart at Walmart. He about broke my hand at Walmart the other day, it still hurts. He's getting bigger, and it's only going to get worse if we can't get this under control. He used to be fine- he liked the stroller/carseat/cart. Now it's "carry me or I'll kick my own butt right here on the floor."

He doesn't eat, he's losing weight... When you're only 28 pounds at almost 5 years old, you cannot afford to lose any more weight. I don't know why the docs are not concerned, he doesn't even look well. He's not sleeping anymore either, and he has NEVER had a problem.

It's scary, he literally is like a different person. We need to figure this out, or in the end, Jaymes will have no one who can stand him but me... And I hope I can do it. You can see it in people's faces, though they would never admit it (maybe they don't even realize it?). Therapists, friends, relatives. People are starting to just be over it. Yesterday at my mom's house, Jaymes threw a fit because she went inside. He tried to throw himself down the stairs, then did a sort of backflip over and landed on his back and head on the hard concrete floor. The only thing that kept us from a hospital visit was the fact that his head landed HARD on Jason's foot. Jason about fell over, he hit it so hard. If that had been the concrete.. Well...

But on the other side of this... We went to the Children's Museum yesterday after all that. Jaymes actually was amazing. He played with everything, rather than running straight to the trains and getting fixated. He didn't seem very happy for a lot of it, and cried incessently at times and tried to run to the trains... But we sucessfully got him to every other activity before letting him go to the trains, and we did not have another all out screaming/biting/kicking hysterical meltdown. for the first time, he walked out of the museum on his own, not carried kicking and screaming. We just kind of ignored the quiet crying and made him participate in things, and he did have some fun. I was really proud of him.

So no, it's not all bad... But it still scares me. Jaymes isn't jaymes anymore, and I don't know why.


all-canadian said...

Has the change only been recently? The one thing that sticks out as different to me is you put him on medicine while he is at school... could that be making it worse when he is not on it?

I don't know how it works, just a thought.

-Panda :)

all-canadian said...

Just read in the post below this that he's off meds now... whoops.

Never mind lol.

Anonymous said...

So sad---I hear stories of regression all the time due to the fact the child is not getting the intense intervention they require. A child like Jaymes would need 40 hours per week of high quality ABA in order to move forward and not regress. It is just a crime that districts can screw a kid over and call the crap they do appropriate intervention. And districts wonder why kids eventually end up in residential. It need not be that way but they are too freakin' cheap to care---and they don't care. Trust me. These special educators are crap at districts. They should NOT be trying to teach kids who need intensive intervention from highly qualified behavior analysts.

Kristine said...

Oh wow, I love your honesty!

And I've been there, and from what little I've read of your blog (I will be reading more!) you are dealing with so much more than we are here. And I've thought things just as harsh about dealing with Noah.

I'm sitting here thinking how much scarier it must be for you and your family watching your son regress. Noah has just always been this difficult.

Amber DBTD said...

Well, it is what it is. I try not to wallow in self pity too often, as it really does none of us any good.

I wish we could do the 40 hours a week ABA, but unfortunately where autism treatment is concerned, only the people with the money can get the right care for their kids. We siply cannot do it. We do our best, and always will, and I continue to try and get CAP so that he can start a home therapy program.