March 26, 2010

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.

March 12, 2010

"The Diet" (Part Two)


The real test of "The Diet" was going home to Oregon for the holidays. We decided it would be impossible to limit her exposure to the "bad foods" so we just let up completely. By the end of the three day period, my sister and I witnessed Amie running around in a tight circle flapping her arms around like a severly autistic child. It was like she was on drugs. As our eyes locked across the room she said, "It's amazing...the difference between the kid that arrived here 3 days ago, and this one..."

It wasn't scientific, but I felt it was a sign.

We went back on the diet immediately and I've been documenting that and other successes and failures ever since. I have started a few free-standing pages here with kid-friendly GF/CF foods and recipies and tricks for making foods, snacks and going out to eat Gluten and Dairy free. I'm not making any claims here...this is just the Cliff notes from a kitchen and parenting novice who spent a lot of time and waaay too much money learning...

I figure, if you can get a toddler to like it, then it's probably pretty tasty...and, as we are teaching Amie, it's nice to share.


P.S. All of the stuff posted here is only if it's worth trying.
The foods we have that haven't worked are not posted.
The things that she particularly loves or responds to, I've marked "Amie Approved".

March 5, 2010

"The Diet" (Part One)


In the beginning days of facing the fact that Amelie might have Autism, there were some tortured and sleepless nights. What did I do wrong? Was it the red wine I drank at my baby shower? What about the time I wasn't paying attention and she cut her forehead so deep she had to get stitches? And what about those vaccinations...??
Jenny McCarthy's book "Louder than Words" had me up reading half the night- bundled up on my couch with blankets and a box of kleenex. I laughed until I cried- and I cried a lot. I knew that if Jenny could be as brave as she clearly was, then I could too. She claims to have "pulled (her son) out of autism" by following the Gluten Free / Caesin free diet.

Deep down, I was feeling a very real lack of control with this situation. A diet is something I could tackle with wild abandon and possibly get results from quickly. I did my research (online and by talking to people I knew who also follow it). I started attracting these people like fly paper! At the grocery store, at the cross walk... All of the sudden, it seemed like everyone in the world knew about the benefits of living Gluten and Dairy Free.

I knew this was not going to be easy. Let's be honest- it's hard enough to quit cheese and bread as an adult. Turning the train around with a string-cheese-obsessed toddler is a whole different story. What? Frozen chicken nuggets and pasta are made with wheat? Mama was going to learn how to cook--really cook-- and fast.

I'll never forget the first time I came home from the grocery store, $200 receipt in hand, after having spent hours reading labels. Tim just rolled his eyes at me- which caused mine to tear up with anger. But I persevered. To make things easier, I separated all of the "safe for Amie" foods. Then I began to research websites and recipies and pre-made foods and condiments. The tastes were wide ranging- but we found some winners.

Eventually, after 3 months of learning my lessons the hard way, things have gotten easier, and less expensive. I finally even have Timmy on board too! The key has been preparation- which is good for us on every level...

March 3, 2010

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.