Monday, November 23, 2009

Melody's First Ponytail


She's also wearing her Geneseo University dress. :)

Saturday, November 14, 2009

Back on Dairy, So We Don't Get Scolded

We've finally decided to go to a DAN! (Defeat Autism Now!) doctor. Here's an article explaining what a DAN! doctor is;

These are the things we can expect to discuss in our 2-hour appointment:
-Nutritional supplements, including certain vitamins, minerals, amino acids, and essential fatty acids
-Special diets totally free of gluten (from wheat, barley, rye, and possibly oats) and free of dairy (milk, ice cream, yogurt, etc.)
-Testing for hidden food allergies, and avoidance of allergenic foods
-Treatment of intestinal bacterial/yeast overgrowth (with pro-biotics, supplements and other non-pharmaceutical medications)
-Detoxification of heavy metals through chelation (a potentially hazardous medical procedure)

What took us so long? The appointment costs 1,000 dollars. And that doesn't include the lab testing and the supplements we'll have to buy. Mom is helping us out (mom, you're an angel) and has asked only that we adhere to what the doc says--a fair request. We don't want to make the trip and spend the dough for nothing.

Our appointment is next Monday, the 30th. I'll keep you posted.
Here are two videos featuring Dr. Elice, the doctor we're going to. He is recommended by the Autism Research Institute and was personally recommended to me by my rescue angel, Judith. Rescue Angels are parents who have been through the drill and volunteer to counsel other parents. You find them through the Generation Rescue website.

Video 1: This resonated with me because we only heard PDD from doctors until Theo was 4.5. If they had just said "autism" in the first place I may have gotten additional services and started the diet sooner. I definitely would have gone to a DAN! doctor sooner--I hadn't even heard of one until this year.

Video 2:
Scroll down, it's the last one on the page.

As for dairy, we want to go into this appointment telling the Dr. we've been on the diet, so even though we haven't seen a change in Theo after giving him milk, butter and cheese, we'll stick to the DAN! protocol for now--since we're paying so damn much for it!

Wednesday, November 11, 2009

Bye Bye Ballet...But Run, Theo and Daddy, Run!

Sadly, "Theo Theo ballerino" is not in his future after all. We stuck it out as long as we could, but it was time to face reality that he was too silly and disruptive in class and it wasn't fair to the other girls. After observing the last class, I realized how out of his mind he really does get during ballet. At one point he randomly started shouting out the alphabet. It was very stimmy, and it's not good for him to do activities where that gets brought out in him. I cried at first, but I've come to peace with the decision. Sure, he loved it, but he loves everything. We'll find another way to channel his energy. And I'm determined to get him piano lessons to fulfill his need for creativity. And I really should do more art with him (eek, I stink with that!).

But, now, gloom aside...the story ends well. I asked Joe to take Theo running with him, and he was immediately excited. They went for their first run this morning. We told Theo they were going to go running and he kept asking "What's running?" to which we replied, "just running!" He wasn't getting that you can just go out and run, and that would have a name! It was pretty amusing.

He insisted on wearing his Batman hat. He asked Joe where it was, and Joe told him Batman took it. Theo said, "Daddy, Batman isn't in my house."

Off they ran in their sweats, a daddy and his boy. When Theo walked through the door upon his return, I was floored to see the look on his face. It was joy, it was disbelief, it was utter happiness encompassed in one big-ass grin. I said big-ass because my language was getting too flowery.

Joe said, "He loved it. When we were running, he told me 'this is so cool.' Babe, this is something I can do with him for life."

Urm, that's not a tear, it's dust....

Academically Pleasing

Theo has continued to get 100 on every single spelling test, and a 90 on his second math test! He's incredibly enthusiastic about reading, wanting to read wherever we go--signs on the street, labels in stores--everything! He's looking for words within words, identifying sounds...he's doing a lovely job. His writing has come a long way, too.

I thought he had a breakthrough this weekend when we were writing a story for school. His first two pages were about "Where the Wild Things Are" and on the third page, I asked him "Then what happened?" He smiled, "I don't know, let's see what the pencil does." And he began to write:

Theo and Mommy Reina are going to the fair see Melody. (he needed help spelling only the word "fair." I was amazed! Sure, it had nothing to do with the first two pages of the story, and sure the letters were way too big and not within the lines, but who cares? Here he was with a thought in his head, and he got it on paper!

When he drew the picture to go with it, he narrated that he was drawing people upside down and people scared. Looking at it, you'd never know that's what he drew, but I love knowing he does everything for a reason. The other day his scribbles were "the star ceiling show" (we recently visited the planetarium).

We had parent-teacher conferences last night, and Theo's behavior is often getting in the way of his schoolwork. His work is much stronger at home, even though a large percentage of his learning comes from school. He has had the same pattern since preschool--observe and absorb at school, apply at home. First that applied to using words, now it applies to academics. I'm very encouraged knowing he gets it. A year ago my biggest concern was his speech, and now we converse every day. His speech therapist agreed he has a lot of potential, if they can just keep him from getting so distracted. He has to constantly be reminded to keep his hands to himself or keep his eyes on the teacher. They take him on walks or computer breaks to calm him down. Theo seems to really like school, for which I'm grateful. It was nice to walk out of a conference yesterday and NOT break into tears. Take it slow, take it slow. Little by little, this amazing boy is growing every day.

Gluten-Free, Dairy-Free, But Never Guilt-Free

It's been about 4 1/2 months since starting Theo on a gluten-free dairy-free diet, also removing soy, corn syrup, preservatives and most other junk from his diet.

Sharon and school have complied, and most importantly, Theo has been great about it. He learned to ask if a food was gluten or dairy free before he ate it. I learned to cook and bake this way and he had no problems eating this way. I learned all about rice flours, bean flours, quinoa flours...butter and milk many ways I became a more healthful cook.

The diet has been known to have a huge impact on autistic kids, particularly ones with a leaky gut (a nice way of saying chronic diarreah). Luckily, Theo never had that issue. We did it to improve his behavior, speech, and focus.

Theo's vocabulary continued to increase, but his stimming didn't decrease. (Stimming is a word in the autism world for erratic, involuntary behaviors like spinning or random gibberish or yelling, etc). I can't attribute the improved speech and vocab to the diet, because he was improving before we started, and any infractions he's had (accidental consumption of wheat or dairy) have had no impact on his speech.

After months of spending a ton of money at health food stores, being unable to eat out or order in, and having to bring food Theo could eat wherever we went, we've decided it's not worth a diet that isn't working. Theo snuck cheese the other day and there was no change. I started giving him dairy again and he's the same kid. I'll wait a bit longer before reintroducing gluten, since I've read that gluten can take 6 months to leave the body and the gut can start healing. But frankly, most accounts of moms who have seen results have seen the results in a matter of days, and with children much younger than Theo.

There lies my guilt. I don't know if this diet would have worked if I started it when he was 2. That's something I'll have to live with. And maybe I didn't do the diet to the best of my ability. I still allowed gluten in the home, which could have contaminated his foods. I'm not the mama warrior some moms are. There, I said it.

This diet won't have been for nothing. Like I said, I've learned a healthier way of cooking for my family. I know how to cook for friends with celiac and am more aware of food allergies now when cooking for other kids. I've baked with Theo more than I ever have, since it was much cheaper to bake the stuff myself than pay $7 for a box of 12 cookies. I will continue to cook with awesome grains like quinoa and hide vegetables in sauces and pancake batters. But soon enough, we'll have our life back, and Theo won't be deprived of fitting in and eating the pizza and cupcakes his friends are eating, that Melody's eating.

When Theo is old enough, maybe he'll decide to try the diet again, when he can evaluate whether it's making a difference in his body in a way that I can't. As for me, I'll ease my guilt a little hopefully the Christmas lasagna puts a smile on that handsome face.

There's still other stuff to try--zinc and other vitamin supplements, yeast testing, other DAN doctor protocol (DAN doctor means Defeat Autism Now doctor and costs about $1,000 for a visit) and there's eep--medications--which is still unexplored territory for us. But in the end, it's going to come down to a great support system of family, therapists and friends in Theo's life. And if you're reading this--that's you!