05 September 2013

She's Amazing

Despite the fact that I way, way, way in advance tried to set up Abigail's therapy, Michigan's therapy program is awful and she won't even start receiving regular sessions until OCTOBER. I'm pissed about it. So anyway, right about now we're meeting with therapists to have initial evaluations, then they'll all write a report. Then another one. Then we'll start services. But anyway.

Five minutes into a session, the therapists are all saying the same thing.
She's doing amazing.
I've got another little boy on my case load her age with Down syndrome and she's really doing well.
I can't believe how well she's doing.
She is really high functioning.

It turns out that gross motor, fine motor, speech, and social emotional-communication/engagement are all her strengths. It turns out everything is her strength. She's doing great. There are even some categories in which she is within a typically developing child's delay timeframe. In English: there are some skills she has that are at the same level you'd expect from any other 2-year, 3.5-month old.

Disclaimer: High function Down syndrome still does not mean "normal." I had a very painful, life-changing moment a little over a year ago when a psychologist informed us that even high function Down syndrome is still technically below the medically defined "retarded" line on the IQ charts. It took me a long time to get here, but I'm finally okay with that fact. I learned how to accept the fact that she'll probably always be delayed significantly compared to a typically-developing person but not let it stop me from pushing her.

I feel incredibly blessed. I don't pretend for one second that any of her high functioning can be attributed to me. It isn't thanks to me that she has high muscle tone for someone with low muscle tone. Muscle tone is something you're born with, not something you can influence by doing diligent physical therapy. It isn't thanks to me that she doesn't have Autism or a seizure disorder or any other debilitating complication that goes hand-in-hand with Down syndrome. I know people in the community whose child has a dual diagnosis of Down syndrome and Autism and it isn't for lack of love, patience, or effort that their child's skill set isn't as high as a similiarly-aged child with Down syndrome.

I try to foster her strengths and build up her weaknesses, but I'm blessed to be in an ideal position to do so. It isn't thanks to me that Matt and I come from stabile families and don't struggle with drugs or addictions. It isn't thanks to me that Matt found a great job that allows me to be a stay-at-home mom. It isn't thanks to me that I don't have some medical issue that would prevent me from being fully attentive to my daughter. I'm very, very aware of how blessed we are, and I make it my goal to never waste an opportunity to help improve the chances of a good quality of life for my daughter.

She's amazing.


Cam Wollner said...

And she's so, so cute. I love that picture of her pushing the shopping cart!

I can relate on the difficulties of getting therapy set up in Michigan. We've been trying to get Maggie seen by someone since June (she has 100% of the indicators of being a "sensory seeker"). While she's started saying one and sometimes two word phrases once in a while, she'll go up to a month being totally non-verbal too... And back in June I was told they'd contact us in September to set something up... And it is so, so hard to wait. I got a book and try to do stuff at home toe encourage her speech but yeah... waiting for therapy (or testing in this case) in Michigan seems to take a long, long time these days... (Sorry for all the rambling... I'm not going to blog about it until we've actually been seen and so it's building up like "somebody please call me!!!").

Amelia said...

Don't sell yourself short. Abigail is amazing..but so are YOU Really! You put so much effort and love into her. It really, really shows and you are an amazing mother. Granted, there are things beyond a person's control that affect their abilities, such as genetics and other disorders. But your love and care and attention is helping Abigail to reach HER full genetic potential.