The time for waiting is over. We aren't going to give up at a token effort. Barriers knocked down. We will find the real you.
Oh, 2 years ago Jaime...it was a valiant effort. I am sorry to tell you that now is the time for accepting. Those doctors don't exist, as they are limited by the bounds of curing pathology. They couldn't find any (or weren't willing to look harder to find any) treatable pathology. Just symptoms and an Autism diagnosis. Take the Daisy you have and run.
She's doing more now than then. Sure, she's still wearing the same size as 2 years ago, but the docs will never look hard at slow growth (2 inches and 2 lbs since then). She's technically growing, and they won't do further testing. Her hand x-ray will show anomalous growth plate maturity ranging from 2.5 years younger to 6 months younger, but they will always interpret that data as "well she just has more time to grow." Her growth hormone is reading low in a static test, but they won't order a dynamic diagnostic test because she gained 1 lb over the course of 18 months, which is "following her own curve." All the tests they run, they do not care about the results. They will be interpreted as a reason not to do anything. Don't worry about coming up with the perfect question to change their minds. You go have your good cry in the hospital bathroom, and get back home to the good things. The fact that her cognitive growth is linked to her physical growth, well, that's not something they are going to get involved with.
|After school naps make me happy!|
We just have to be parents to this kid. Not her healers, too.
Right now, she's stimming and vocalizing in her playpen. She's happy in this little world. It's good enough today. When people light up, talking about Special Olympics, you will smile and say "isn't it wonderful?" and walk away, knowing your daughter will not participate, because it wouldn't be appropriate for her. She has no sense of winning or losing. Or even walking forward for any reason except getting a hug when she gets to you or that a stimming toy is waiting for her. The only inclusion that matters to her is eating on time at our family dinners, getting out of her stroller and swinging the second we get to the playground, and that Miss Jenn lets her touch the teacher's instrument at circle time when the other kids are sitting.
|Dear Lord, she is so beautiful, she takes my breath away. Thank you for picking us for the poorly timed Mass-singalongs, the pinches, and the stimming. We get to see all the beauty that goes with it.|
Two years ago Jaime, you did really well. I know a lot now because of your efforts since. But, the worry about this mystery kid needs to be set down for a while. Your tears and thousands of miles driven, and countless favors of babysitting asked are appreciated. Their fruition is the peace I have saying, "it didn't work out. We are getting on with life." Sounds kind of pathetic, but it's not. Today, it's the strong thing to do--to walk away without an answer is walking away a winner.
Oh, and don't stress too much about the surprise baby, and Tug will be better after those miserable first six months. Hang in.