36 days of 24/7 with Riley and I feel like maybe all that progress I thought had happened didn't really happen at all. Maybe it was just that she was at school from 9-3 each day and I was getting a break, so my outlook was better.
I am in a serious funk and yes I feel sorry for myself and I feel sorry for my kid. And my other kid. And my husband.
All my friends can send their kids off to day camp to keep them occupied and happy for at least some of the summer. Riley can't function independently at day camp, and I don't trust the 20 year old counselors to know anything about dealing with her for an extended period of time. We've tried these things and we get kids that assume she's being willful or bratty. Tell me counselors, what kind of training have you had to work with a child specifically like Riley? Not much, let me tell you.
The "autism" camps would seem like a better fit, but they really aren't. Riley does not do that well with her own kind. The autistic behaviors of her high functioning peers, the unpredictability, the loudness (oy if somene else screams) she comes home looking shell-shocked and terrorized. And for anyone who thinks I'm being over-protective, do you know what it's like to pick up a child at school with blood vessels broken in her eyes from crying so hard all day? Fuck that.
We did a week of sculpting class. It's drop-off for an hour and a half. She did beautiful work, but I had to stay. She could not handle it.
Last night left me nit-picking Todd. "Why have you never even once read a research study on autism. Why have you not studied every treatment? Why is every decision for this child on my shoulders?"
"I feel like you are always ten books ahead of me, no way I can keep up," was his reply.
Earlier, I'd brought Riley to Seth's second karate class. Todd is working evenings so there are some nights I'll have to bring her. She plugged her ears but it wasn't enough, and the loud yells rattled her nervous system to the point of her crying loudy, disrupting the class. A teacher came over to ask about her. Seth, stood on the line, trying to be brave, checking my face for reassurance. I rocked her, soothing her, running my hand over her hair, telling Seth with my eyes, "It's okay buddy, keep going, you're doing great."
Riley's body did the big heavy jags that go with crying, and she whispered, "It's not fair. It doesn't bother anyone else."
Usually I tell her it's just one of her challenges and remind her of all her gifts but last night I just agreed with her,
"You're right baby, it isn't fair. I'm so sorry."
Later, after the fight, it was me with my head in Todd's lap. This time it was my body with the big heavy jags. Todd's fingers through my hair.
My child suffers and I can't figure it out.
She is so vulnerable and I can't protect her.
I can't take away her pain.
~
Click here for amounts of thimerisol currently in childhood vaccines. Print it off and take it to your pediatrician and check labels together for any vaccines you are planning to allow. No amount of mercury has ever been proven safe for living tissue.
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17 comments:
(((((Michelle))))) I wish there was something I could say except that I understand. It's not fair.
I'm so with you on this...every single word. We're stuck here at home and can't do the simple summer pleasures with 3 boys with autism. We tried autism camp once....once. And I can't think about the thimerisol too long without my blood boiling. My precious triplets were perfectly normal until their 18 mo. vaccinations. And yes, I do all the research in our family, too. But I'm a sahm, so it only seems to make sense. Best wishes to you and your sweet Riley today...
I understand the "serious funk" because I was way down in it the other day. It's hard to know what to do with the pain. Sending you love.
Sometimes I think the best response is just to agree.
My now 12 year old was there (Riley is 6?), and this summer did 5 days of over night camp!! Keep the faith!
Michelle, you made me cry - for you, for me, for all of us. Everything you wrote hit home. So unfair.
fighting back tears . we all know the moments so well ... sometimes we all need to let it out. it's NOT fair and it's hard . sometimes it's just unbearably hard. and we have to give ourselves those moments. the moments when we shut it all down and give in to the sadness or the anger or the helplessness .. or all of them.
we owe it to ourselves, hell, we owe it to our children, to allow ourselves to FEEL it, to live it, to let it out.
i remember ages ago hearing about the oxygen mask theory. the gist is that when you are on a plane and they are showing you what to do in the event that the oxygen masks are deployed, the first thing they tell you is that if you are travelling with small children or those who need your assistance, it is essential that you DON YOUR OWN MASK FIRST. the point is, you can' t take care of all of the people that need you unless you see to yourself first.
and sometimes - just sometimes - taking care of yourself means curling up in a ball and crying.
you are blessed that you have your wonderful husband to see you through those times. so many in this boat don't.
i wish you peace and strength and above all the knowledge that you are NOT alone.
www.jesswilson.wordpress.com
love.
Gosh Michelle. Your writing is absolutely awesome. You had me busting out laughing on the first paragraph and totally crying by the last one.
One day, your Riley will understand just how incredibly special she is -- so special that her Mom devoted her time and talent to record her every achievement, pain and struggle.
In my book, it doesn't get any better than that.
Best,
Kelli
It isn't fair at all. Much grace to you sweet woman.
Only love, Michelle.
So sorry Michelle.
love.
I'm so sorry. I love you both.
Here's to school starting again.
I'm sending a wish out into the universe that you will soon find a lovely person in your area who needs extra money during the summer - a special ed teacher or someone who IS trained to work with kids like her and wants to spend time doing fun things with her and give you a break...
Love.
Not fair to any of you. I hate not fair.
((((((you and baby girl))))))
It isn't fair. It isn't right.
;(
I've given up trying to get mine into any kind of mainstream summer camp as the counsellors just can't cope.
We tried special needs summer camps last year. The staff were fabulous but.......
This year we're going cold turkey but I'm sending my daughter away for two weeks camp with her sister as camp counsellor! Woo hoo, go girls!
I'll miss her [them both] but I figure she needs some down time and the opportunity to feel 'special' for a while even if it's not with me.
I certainly agree that sometimes, just saying, 'yes it isn't fair' is the only thing to do.
Best wishes
Nothing about anything in this is fair. Still Thimerosol? I cannot believe it!
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