Wednesday, January 5, 2011

This can't be happening to her.

My daughter isn’t talking. Well, she isn’t talking much. Warning bells have been ringing in the back of my head for months, but I ignored them because her older brother was a late talker too and now is significantly above average at just a little over three. Whenever I would express my concerns to other people, they’d just say that she was fine. She obviously understands everything said around her and her brother turned out fine, didn’t he? So I waited, and waited. I just wanted it to “kick in” so I wouldn’t have to worry any more.

The funny thing is that I’m a speech-language pathologist. I know how normal speech development works. I knew this was different. But I still procrastinated convincing myself that I could wait because everything turned out fine with Michael.

Finally I just couldn’t wait any more. I started making phone calls about a month ago. I called her pediatrician. She told me to start with a hearing evaluation. It’s scheduled for the end of January. Two months to confirm what I’m pretty sure I know – she can hear. Found out that our insurance doesn’t cover speech therapy for children unless they had it and lost it (like with a head injury). Started her with a private therapist who agrees that things aren’t right. Twice a week for 30 minutes. Seems like so little time to try to fix so much.

Called Missouri’s First Steps program. This is the program in Missouri that serves the birth to three population. They scheduled an evaluation, but doubted she’d qualify. In order to qualify, she’d have to score as low as a child half her age – 11 months on a language subtest that combines how she understands language as well as how she speaks language. Well, she understands just fine which was bound to bring the score up. I scheduled the evaluation anyway. At the very least she’d be evaluated by someone with a lot of experience with little ones who could confirm my concerns even if she didn’t qualify. I called the local university’s speech clinic and investigated the possibility of her being seen there. Anyway, I made a lot of phone calls and set up a lot of appointments. Then it was the holiday season and things were so busy I escaped for a while.

What I can’t seem to do is think about the situation on an emotional level. Every time I try to think about the fact that my baby has a severe speech delay I just completely break down. Which is completely useless and unproductive. I’m a speech pathologist. Who better to try to help a child with a speech delay? And I just can’t seem to do it yet. I need a clear head to research and plan goals. I need a clear head to sit down with her and work with her like a professional rather than an extremely upset mom. And I just can’t. And I feel incredibly guilty about it. Ever since making the phone calls I’ve been trying to just tune out. Try not to think about it. At least it keeps me functional as a parent who’s the primary caretaker of two small children.

Today was her first steps evaluation. Good news is that in every single area except expressive language (speech) she’s above average. Tests at 2 years of age or older. Bad news is that she scores like a 6 month old on the language portion of the test. 6 months old!! That’s nearly a two year gap between her ability to talk to people and everything else. She’s not even two years old yet.

And unofficially, it looks a lot like childhood apraxia of speech. Which I knew. I’m a speech pathologist, of course I knew. But it sucks to have someone else agree. No one would officially diagnose her at this age. But she’s normal everywhere else. No sensory issues. No social issues. So few consonants (only two). So few vowels. No imitation. No vocal play. I suppose I should just be grateful she’s going to qualify for services. And I am. Really, I am.

But I’m mostly just incredibly sad. Not for me. Just for her. I’m terrified of a future in which my bright, cheerful, independent, sweet girl cannot express her thoughts and feelings to the people most important to her. Of how peers and school will treat a little one who continues to be silent when all around her are talking. She’s so smart and no one will know. How will she continue to keep up when she doesn’t get to participate in conversation with her family? She can’t ask questions about things that interest her. She can’t comment on things she thinks are funny. She can’t ask for help. She can’t tell us why she’s sad.

And I have to help her. I have to. It’s my job. I’m her mommy. And I can’t yet because my emotions won’t cooperate. When does it get better? When does this stupid diagnosis stop being the only thing I think about all day? It’s there when I get up. It’s there when I’m trying to go to sleep. It sneaks up on me during every quiet moment of the day.

I’d love to come up with some succinct summary of this mess, but I simply don’t have anything else to say right now.