Wednesday, September 24, 2014
One Year from the Diagnosis
I was in the kitchen when the phone finally rang and I practically jumped across the room trying to get to it and after answering heard those words that she qualified for services and after asking exactly what that meant was told that she was officially autistic.
I didn't burst into tears right away. Later that week, a few times, the overwhelmingness of all that I didn't know and understand would rear it's head and I would burst into tears in my room, but those days were also an odd mixture of relief, tempered with large amounts of worry because I had no idea what came next. I'd begun to gain a tiny understanding that the stereotypes of autism that I'd seen portrayed here and there on TV were just that, stereotypes, but I still had no idea what to expect from the future.
Suddenly our calendar was full of meetings and doctor's appointments and tests that I was jamming into the moments when Paul wasn't at the law school in class so that someone could watch Sadie and Patch.
Before that day I hardly glanced at my calendar. These days my calendar feels like an extension of my body that I bring with me everywhere, because if I don't a doctor's office that I've been waiting for months to hear from will finally call me and tell me that we're at the top of the waiting list and I absolutely must be able to schedule that appointment (which will still likely be two months out) at that moment, because there is no way I am even allowing the possibility of giving up a spot that we've been waiting for for a full calendar year.
So we're busier than we were when we first started out. Our lives look different than they did a year ago... and I am so grateful for that fact. The daily meltdowns at 4 pm are gone as are the three hours of waking and yelling and jumping from 1 to 4 am.
We've learned so much about Mae in the past twelve months. We've learned how important her diet is and what a huge impact it has on her behavior. We've learned that she's smart as a whip and that the local university is happy to have her come in to help train grad student's because she keeps everyone on their toes, thinking ahead of what they're doing to what they're about to ask and giggling as she tries to trick them into doing what she wants to do instead. And I'm thrilled to take her in because she has so much fun doing it.
The other day as we walked out to the car I let go of her hand to open the door and she glanced around, surveying the street we live on. Then she put her little hand out flat and thrust it at the world as if to say "stop" before turning and climbing into the car and walking to her seat. I'd known from the second she looked around that she was thinking about running and I'd quickly put down the folder I was carrying with me in case I had to chase after her, but this time she didn't take off at a sprint. It was a first. A year ago 10 out of 10 times she would have sprinted just to feel her legs pumping as she propelled herself away as quickly as she could.
Every week she does something to amaze me, something that seemed unimaginable a year ago. Between drawing pictures, making up signs and using words, and also through her many varied expressions, the world of communication has expanded in the last year far more than I could have imagined that morning when I was wondering what the future held. And while this roller coaster has had it's share of tumbles as well as climbs, the general direction is evident by her joyful smile as she races past me while I type this, stopping to show her sister how to blow a kiss.
I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!
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I can really see the blossoming via her photos! So pleased for all of you. :)ReplyDelete
I remember when you first posted about Mae's diagnosis. I had just recently found your blog, and was expecting you to have post after post about how freaked out you were. I expected you would share the emotional side, your crying, any sense of despair, your disappointment, your sadness. But no, you didn't. At first I thought that it was a bit unreal, then I guess I began to understand that you probably felt all those things, but just didn't use your blog as a vent for them. You would occasionally allude to them, but not dwell on them.ReplyDelete
But I am so glad she was diagnosed so you could begin to deal with what was actually happening to her. And it is wonderful that as she is growing she has some help to develop her greatest potential.
I think it's so great you were at the right place (near the University) where there was a program that could help her, and she was accepted. That may make all the difference in her life.
So glad the climbing is less, but she is growing up too, and will change as she does so, just like any little girl does. She's a blessing, and who knows what her life will come to be. I pray for her often, and hope she is able to eventually manage independence as an adult. That would be the best possible outcome.
God Bless. ~ Bonnie
(Had to use Anonymous today: OpenID gave me an error)
What an incredible - and life altering - year this has been for Mae, and for all of you.ReplyDelete
How providential that you made the move from Florida to Michigan!