Wednesday, May 4, 2011

The letters bother me

Do you ever get overwhelmed by the muck? I feel like I'm trudging through a quagmire. And its nothing in particular, the last few days, Chris has been extra temperamental. It's been so rough. I am having trouble finding the words. We've become one of those families, that cancels stuff at the last minute because the kid is misbehaving. And that's new for me. Chris used to behave better when we were out, I was a better parent when we were out. Lately the process of going out is so exhausting, that if he's in a snit, it's just not worth it. And that's a really strange place for me to be. Has he been like this the whole time? Was I better able to handle it when he was younger, when there was only 1 kid? Am I just as big a hot mess as he is?
I got overwhelmed this weekend, because I feel like I'm battling with him all the time, and it occurred to me, that with him being put on The Autism spectrum (see I said child is on The Spectrum) suddenly it occurs to me to be sad, to mourn the loss. Suddenly I worry if he's ever going to live on his own, and if he's going to ever move out of our house, if he'll ever be socially continent, and its paralyzing. I need to just not think about it, and yet I think about it all the time. At the end of January, he was diagnosed with PDD-NOS, ADHD, and ODD, which stand for Attention Deficit Disorder, Oppositional Defiant Disorder, and Pervasive Development Disorder-Not otherwise specified, which is what puts him on the spectrum. I thought it was a bit much, since we only filled out a survey, talked with a social worker for an hour, and didn't even see a real MD. I don't consider myself a therapy vs. med school snob normally, but it bothers me that a real doctor didn't diagnose Chris. I'm saying it now, because it has been eating at me. I can't decide if I want to admit aloud that my baby is 'On The Spectrum'. It chokes me up. It hurts.
On the other hand, this hot mess of diagnoses seems to be slowly opening doors for Help. We're getting Therapy, but I'm not feeling like its helping much. Then again, I'm not doing every single thing they say to do. I'm in a funk, the Riley therapist tells me to get all artsy and make charts, and all I can think of is, the MINUTE that I dig out all that crafty crap to do that, I'm going to get a phone call for a house showing. And it frustrates me. Now finally someone from the schools come out last week and Observe him in preparation for Kindergarten. And she instantly recognizes problems. He's cognitively ready for kindergarten, but not socially ready. And we're waiting for a follow up meeting. It's such a slow process, I'm frustrated.
Chris was in developmental preschool for a year and a half, and he was doing so well they graduated, but that was before recent health problems that have escalated his bad behavior, prompting the meetings and diagnoses. And now, NOW, they're like, Oh, he has problems. He's a Sensory Mess. Duh. I didn't want him to graduate the first time. Remember?
In this particular instance, I want to shout, do you see? I was right? On the other hand, being right kind of sucks.
Suddenly it occurs to me, that for the rest of my life I'm going to be a parent of a Special Needs kid. All this time, I've been one, but everything felt so fixable, temporary. I've said all his life, "he got off to a bumpy start" or "we're working out the kinks with his digestive tract". But these letters? This stuff is not fixable. And I'm not dealing with it very well, it hurts my heart, that I can't fix it, and I can't find someone who can.
Yeah, and We're also trying to build a house and move, so I'm all kinds of stressed out. His surgery is less than 3 weeks away, and just the thought of it causes the bottom to drop out of my stomach.
I was sitting with a friend yesterday, finally able to verbalize some of my thoughts, and asking for help, she's got a special needs kid too, and I said, what do you do, how do you stop thinking about fighting with them until they are 30? She didn't really answer, but we changed the subject talking about different worries, and how they change over time. First you worry if they'll survive the surgery, then you worry if they'll every walk, or talk. Once you hit those big milestones, the worries change. My friend told me to just try to just face each day as it comes. God created Chris, in this way, and He never said we were guaranteed an explanation. So true. She didn't mean to hammer home how much it changes, but oddly enough, it's those changes that began to comfort me. I'm not going to be fighting these same fights, sure it may be all new fights, and I can't predict that, or maybe different ways of the same fight, or maybe I'll be better prepared. But what I got was This is temporary, this crazy phase where I just want to crawl in a hole is Temporary. My Crazy, his Crazy, whatever it is, It's Temporary. And I can deal with it, knowing it's a limited time offer.


Unknown said...

i'm not there with you physically, but know that my heart is with yours. (they're hugging.)

Andrea said...

Sorry to hear things have been so rough. I pray that the school comes through quickly and you are able to get help for him. If it makes you feel better to get a second opinion from a medical doctor, I think you should.

As medical technology advances, hopefully help for Christopher will advance as well. Good luck!

Suellen said...

Cathy - I've been meaning to comment on your blog for a long time, but I mostly read at school and for some reason I can't comment there. Anyway - I just want you to know that I know we don't see each other much, but I love you and your family and although things are hard, you are incredible mother with amazing children (letters and all). Miss you ALL!

Kathy said...

Prayers to your family as you work through this! (I agree with Andrea.)