Baby Steps

It was a fantastic day in February, not long after Amie's 3rd birthday, when we got the 'official' news that she was not autistic. The official/non-official "diagnosis" is "Rule Out PDD". In two years, Santa Barbara's Tri County Regional Center has recommended that we have her re-tested. Until then, her problems are deemed not severe enough to warrant state assistance.

So, ok ok I know I'm supposed to be happy about this...and I am. But I find myself obsessively wanting a "real" diagnosis. Something tangible that we can attack with full force. It's like we've come to the end of this marathon of testing and worrying and planning only to be told to wait for 2 years to run it again and then maybe they'll tell us our time.

This points to the larger issue at hand which is less about Amie and more about me. The thing is, no matter what she "has"- she is Amie and we will do the best we can for her because we love her. And we will teach her, using whatever methods we can employ, how to take care of her little self in this big big world.

We have hired Julie Diangeles, a fabulous speech teacher, and we continue to learn every day from Donna at Child's Play. We are still on the diet and it's getting easier. At this point it feels like we are all working as a team. Amelie is carrying her own weight, and she not only acknowledges it, but is very very proud of it.

Yesterday, she was fumbling with the buckles on her shoe. I reached down as I've done so many times in the past to help and, instead of the usual screaming and outrage, she just shooed my hand away and said, "This time, it's my turn."

Baby steps...literally.

The Charger and the Thinker

I am a charger. If a problem arises, I'm one of the first people to identify it and (putting ego aside) work to correct it.

Tim is a thinker. He is more comfortable calmly pondering the information and possible solutions..." sit on it and let life take it's course" ... "watch and wait".

When our daughter- the most important thing in both of our lives - became "afflicted" with this unknown diagnosis, we each did what came naturally...

I went running from the building, straight to a computer. I cried through the most touching videos - parents describing the journey's they have taken, watching their children degenerate. I began to get anxious. I spoke to my mom, who not only is an amazing mom, but has also been trained to care for autistic children. I spoke to my sister, Melissa, a special-ed grade school teacher. She confirmed that Amelie did indeed show signs of Aspergers Syndrome- particularly in her frequent shows of resistance. I read articles, books and interviews. I stayed up all night long and read Jenny McCarthy's "Louder Than Words". (A great and empowering book which gave me strength through some dark days. I heart you Jenny)- then I put the whole family on the GF/CF diet. I paced. I fretted. I talked and reached out.

Tim, on the other hand, retreated. He lay horizontal, catanoic, staring at the TV screen. His voice was quieter, his hugs were longer, his eyes were tired. He became frustrated at my buzzing energy and boundless "solutions". I became irritated with his seeming lack of caring.

One morning I called Melissa with this problem. She laughed and said that it was normal for the father to experience more "denial" or at least to deal with it differently. Her casual demeanor regarding what I thought was going to be a major issue somehow gave me comfort. "It's very common." she said. "Try not push him. He needs his space right now to handle it in his own way."
"Besides," she added, "You don't even know what this is yet..."

The difference in parenting and living styles is something I'm sure all parents and partners struggle with. Dealing with a child with 'special needs' just puts those struggles under a microscope. So many times I've screamed to myself, "It would be SO much easier if I could just do this on my own...make my own choices and solutions with nobody fighting me!!"

But, time has shown me that is not the case. He is the only one who can comfort me when tantruming just won't end. He's the only one that secretly chuckles with me when she says something that sounds absurd because she can't find the words yet. He's the only one that loves her as much as I do. Maybe we don't always agree on the methods, but I could never, ever do this without him.