30 September 2013

Fighting for Her

A few thoughts today, my friends. I have something big and exciting coming tomorrow, but I thought I'd try to squeeze one more post in since I haven't been too diligent about updating lately. I'm having some small health problems, nothing too serious, but now that we have health insurance, I've been catching up on long-lost doctor visits. It turns out your kidneys aren't supposed to hurt on a daily basis. Heh heh, who'd-a thought?

Anyway, we finally had the last testing/paperwork meeting and can finally begin Abigail's therapy services. Only two months after I made the initial call. Ugh, anyway, Michigan is much different than both Illinois and Florida in the way they structure their program. At most, kids in Michigan can only receive 50% of the services we were getting in Chicago. Because Abigail is doing so well, no one wants her "taking up" that many resources when "they could be going to a kid who really needs them." Now this is when I launch into an epic rant to my poor husband, but I'll spare you, dear readers. Suffice to say, we haven't worked our asses off for Abigail to succeed only to get her resources chopped 66%. So I went to battle. And while I did get Abigail the maximum number of hours/week permitted, I had to compromise on which services she'll be getting. And I'm a little disgruntled.

You see, all doctors, nurses, therapists, well-meaning friends say, "You know your daughter best!" But so few actually mean it in reality. "You know Abigail so well!" I hear at the beginning of a meeting only to find myself defending my decision not to send her to preschool half-way through the same meeting. They all stare at me kind of shocked. Like I'm refusing heart surgery for her or something.

I have nothing against preschool. I'm not ruling it out for all of my children. Lots of kids benefit from a little pre-kindergarden school and I might have one of those kids some day. But I know Abigail. And I know she would not thrive in preschool.
"I understand, she's your baby," someone tries to sympathetically reply. But that's not it. I mean, yes, she's my baby and watching her growing up is hard, but that's not why she won't thrive.
"No," I stated, getting passionate. "A complete stranger is going to be wiping her butt. She is going to be fully dependent on someone else to carry her up and down stairs." I realize now, after the pressure is off, what I was saying then.

Abigail is too vulnerable.

1. Abigail does not have any words. None. So she can't tell other kids to leave her alone. She can't tell the teacher if she needs help. She can't tell me if something went wrong at school that day. In fact, if her preschool teacher doesn't know sign language, Abigail can't even tell her if she's thirsty.

2. Abigail isn't an aggressive kid around other kids. Even just during play dates I keep an eye on her - she doesn't do a thing if someone else pushes her down, takes her toy, or even puts a pillow over her head. I know that teachers can't give 100% of attention to every student.

3. Abigail is still an unsteady walker. And while this will probably change by next fall (the local school system and I finally came to the agreement that January is too early for Abigail), she'll still be an entire year behind the other kids in practice. That leaves her really open to be left behind if they kids near unsteady footing or staircases.

4. Abigail has no interest in potty training. She doesn't even complain when she's wet. A complete stranger in my daughter's diaper region? No way.

5. During our last few weeks in Chicago, I bowed out of her therapy sessions so I could pack and every. single. therapist. reported that Abigail was significantly more "checked out" when I wasn't present. She wouldn't participate as much, she wasn't as vocal, and periodically she would leave the sessions to be alone. These are people she'd seen every week for a year. The people she was closest to other than Matt and I.

If I sent Abigail to preschool, I would be banishing my mommy-instincts to the basement and doing what a governmental organization recommends. A few therapists who've seen Abigail twice. In Chicago, no one ever brought up preschool to me. In Michigan, they discussed it the first time we met.

I thought I was the Chica expert?

And that brings me back to her therapy. Because Abigail doesn't vocalize any words, only signs them, she does not get credit in speech therapy in Michigan. She understands the word "kitty" if I say it, she can sign "kitty," she tells me (via sign language) about kitties in other people's windows, she tells Dad (via sign language) about the kitties if they did something bad during the day. But she gets no credit for the word/concept of "kitty" being insider her little head because her lips and tongue won't cooperate. So they're registering her at a 10-month-old level! Both her Chicago speech therapist, her pediatrician, and her geneticist all say that she uses signs like most two-year-olds use words. I consider communication to be one of Abigail's strong suits. But Michigan doesn't. So, considering the huge gap, they insist that if I want two hours/week of therapy, one of those hours must be speech therapy.

And to add insult to injury, I know more about speech therapy than her speech therapist. She asked me on our first session what techniques we use with Abigail. She hadn't heard of any of the ones I named. And she doesn't even know sign language.

They promise that we can change things without another epic paperwork meeting later if they aren't working. Fine. Let's play that game. Let's do things the government organizational way for a month or two. I'll be doing twice as much work with her at home to be sure she doesn't fall behind. And I'll be keeping track of what I do. And in two months we'll talk again. And I know this because I know this kid.

Down syndrome may affect everything else about her life. But it doesn't change the way her mama feels about her.


Cam Wollner said...

I'm so glad that you are here Momma so that you can fight for her (although I'm sorry that it's such a hard fight!)!

I know in the coming weeks we're going to be beginning having the same discussions. The intake worker was really nice when we discussed homeschooling and I really, really hope everyone else stays that way. I'm pretty committed to homeschooling anyway, but the idea of sending my non-verbal child away all day makes me feel a little sick too...

And I need to email you!

Amelia said...

Sounds like you are doing a great job advocated for Abigail. I hate how "they" push preschool SO EARLY...it's crazy.