Thursday, April 7, 2016

Nobody's Ray of Sunshine

We began our journey in 2000. My daughter was born May 20th, three weeks early. I had no idea that a difficult pregnancy, super high blood pressure, borderline gestational diabetes, and an emergency c-section would be the easiest part of having my daughter. I did everything I was supposed to. I even gave up freaking caffeine while I was trying to get pregnant and throughout the pregnancy. I didn't take meds I wasn't supposed to. I didn't drink. I've never smoked. I followed all of those baby book rules on how to give your baby the best possible start.

We noticed she wasn't making any of those baby milestones. We pushed for an early referral and didn't settle for - maybe she's just a late talker. Oh, we did early intervention. We had our first evaluation at 18 months. We did home therapy. We did special schools. We took classes on how to communicate. Here it is and she’s going to be 16 next month. She’s been at four different schools in two years. We failed at high school general ed with support. We failed at high school special ed with more supports. We failed at in school computer based classes with many supports. We failed at day treatment school number one. We failed at the autism school that takes kids that can’t succeed at other schools. And now we’re at day treatment school number two. She’s still physically aggressive. She’s still defiant. But, by god they’ve had her doing the first actual academic work she’s done in two years.  `

When we first started on this journey when she was young, there were more experienced parents that gave us advice and encouragement. You’d think I’d pay it forward, but I don’t. I can’t. How can I offer hope and encouragement to a parent just starting this journey? My well of hope is a damp puddle at best. I don’t see a light at the end of my tunnel – not even an oncoming train. Maybe I will rediscover hope. Maybe this school will be the magic we’ve needed. Maybe we will finally get the right dose of med. I don’t know.

I hate when people tell me they’re sorry about her. I hate when they act like I’m a fucking saint. I’m not. They tell me, ‘God’ chose me to be her mom, and ‘God’ doesn’t give you more than you can handle. Fuck you! I deal with this because I have to deal with it. I soldier on because there’s no alternative to me. Yes, I love her. It may not sound like that, but I do. She’s smart and funny and so creative – and drives me up the fucking wall. She’s frustrating, maddening, obstinate, difficult – in fact difficult doesn’t even begin to cover how difficult she can be. But it is what it is. You know what would be like winning the lottery? Telling her "I love you" at bedtime, and just once her saying it back to me.

I don’t have a blog of sweetness and light. I don’t want sympathy. I don’t want accolades. I just want a fucking ray of hope. Maybe I don’t deserve it, but damn it, I need it.

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