Balancing Hard Work and Expectations

Joe and I walked away from our meeting with Ms. Fredericks today feeling great! She was all smiles talking about Theo, telling us we should be very proud. And we got the impression that she really likes Theo. I know it's hard to imagine anyone not liking him, but that's the sweet Theo you know. In school last year he had bad behavior issues and I could tell his teacher just plain didn't like him and didn't want him there. It's very hard for a parent to see someone feel that way about their baby.

The Report
Now, I was that kid who was unhappy with a 99 on a test. I held myself to ridiculous standards. I'm not sure why, because my parents sure didn't. They always had to tell me to ease up on myself, force me to stay home when I was sick because I wanted to go to school  (not becuase I liked it, but so I wouldn't miss something important) and sleep more and study less. It was definitely somewhat of a role reversal. I think I owe my attitude to the need to compete with my two best friends who are geniuses and scored 100s in their sleep.

All the stress I gave myself in school was unnecessary and not something I want for my children. But how can a perfectionist hold her children to lower standards than she held herself?

Maybe autism was the kick in the teeth I needed.

First graders are given standardized tests in NYC now. Makes you wanna cry, no? We received those results today. Theo was on grade level with math, and on the cusp of grade level with reading. My heart sank when I saw his below-average reading scores, but only briefly. I reminded myself this wasn't a standardized test for special needs kids--it was for all first graders. It wouldn't be fair to hold him to the same standards as everyone else.

Nor would it be fair to teach Theo that it's OK for him to expect less of himself and use autism as a crutch. We are still learning the careful balance needed between making him work hard but forgiving himself for taking longer to catch on.

But it's his mom who struggles, to tell the truth. I get frustrated during homework. I start yelling at him. Yesterday I made him cry because he wasn't telling me the right answer in math. I know that makes me sound like a monster, but he wasn't trying.  He was just naming random numbers as answers. I usually know the difference between him being uncooperative and legitimately struggling. Still, when I saw the tears I hugged him and told him this work was hard and he was doing a great job and would get it soon. I reminded myself that I had to get my act together as much as he does.

Luckily his wonderful sitter Sharon and his best friend Reina (she's 8) are the ones who help him with homework on most days, and he is much more cooperative with them.

Back to the parent-teacher conference. Ms. Fredericks has been giving him lots of prizes lately for good behavior. While he has trouble transitioning between activities, he's socializng much better with the other kids. He works beautifully with Ashley, who is calm. She keeps him with the calm kids because they bring out the best in him.

She was very impressed with his growing vocabulary, as are we. She showed us the "on demand" story the kids had to write where the kid writes a 3-page story with 3 illustrations with zero help from the teachers. His story was great! Really nicely written, most words spelled correctly--and adorable drawings of him sledding.

The principal randomly walked in the room during the meeting and gave us a big smile and thumbs up to indicate how well Theo was doing. I smiled through my teeth and repressed the urge to say "aren't you glad we didn't take him out of this school last year like you clearly hoped we would?"

Ms. Fredericks also remarked on the great change in Theo ever since we took him off the gluten-free casein-free diet. He was just so happy to eat what the rest of the kids were eating! Remember my post about the important social component often ignored when this diet is discussed? She used to buy him gluten-free cookies (which I didn't even know--so sweet!) to help make him feel like he fit in, but he always knew they weren't the same as the other kids' snacks. She says he's an overall happier kid in school now.

Heehee-- I told Theo I was proud of him because his teacher said he was doing well in math, reading, and writing. He asked, "What about lunch and snack?" as if those were subjects too!

Gluten's Back, and So Is Mama's Sanity

There's a very good reason I haven't described the visit to the DAN! doctor. We didn't go. The follow-up visit, which is just a talk with the doctor WITHOUT the child present, would have been $750. So that's $1,750 plus the cost of additional allergy testing, prescriptions, etc. We called off the visit so that I could look into getting some help from my job next year, if this kind of medical visit qualifies for the Flexible Spending Account. Autism treatments nearly never get financial support from companies because it's all considered experimental.

We decided the day before Thanksgiving that we were going to take Theo off the gluten-free/ casein-free/ soy-free/corn-free/limited-sugar/no-preservatives/no-artificial-colors diet. That was fun to type!

What followed was--and I suppose this is a dramatization, but not by much--getting our lives back. We spent two nights in New Jersey with Joe's family. Not only would I have had to prepare Theo a special meal, but all the foods his cousins, 3 boys, ate would have been off limits. When Theo is there it is common for the boys to all munch on a bag of cereal, pretzels, and other snacks. Trying to keep Theo from those food would have majorly stressed me out and made him feel left out. I know, because that's what our previous visit was like.

How wonderful it was for Theo to sit and eat the same turkey, the same creamy mashed potatoes, the same apple pie as everyone else!

And guess what--on Monday, Ms. Fredericks said Theo was particularly well-behaved that day. This was before she knew we took him off the diet. The rest of the week he continued to behave nicely. Today, he came home very excited that he won a prize for good behavior! This could all be a coincidence, but at the very least, the opposite was supposed to happen when we put gluten and dairy back into his body, so...

Recently, I had a mini revelation when telling Aunt Pia about all this. One of the major characteristics of autism is the lack of social skills. And what was I doing by making him eat different food at a birthday party? At school, on pizza Fridays? I was exacerbating his already-poor social abilities. Seems counter-productive to me.

Please don't think I'm bashing the diet. I think it's wonderful--a miracle, in fact--that so many children have recovered from autism because of it. It didn't happen for my kid, but now I can feel good knowing we tried it for five months. And unless it had been a miracle cure, it would not have been worth it to further hinder Theo's chances at normalcy in social settings. And let's face it, his mama's a foodie. My favorite sous-chef can now learn the art and importance of butter and flour to real cooking. :)

The best part is, my guilt is mostly gone and I'm at peace with this decision. That's something I didn't think would happen. There are still natural vitamins and supplements to explore. We'll see what the new year brings us. For now, time to take a break from all this Mama Warrior stuff and relax and enjoy my sweet boy. Right now he's inside eating the empanadas he helped make--think I'll go join him.

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;
http://autism.about.com/od/alternativetreatmens/f/dandoc.htm

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: http://www.autism.com/danwebcast/video-list.asp?showsession=Science&conference=SanDiego
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!

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 substitutes...in 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!