I Want

Reconciling the tears of happiness and tears of grief caused by these two little words

When I met Joe, I told him we would raise our kids to be little Charlies. As in, the little boy from Charlie and the Chocolate Factory by Roald Dahl. Charlie's family was so poor that they saved  up all year to buy him a chocolate bar for his birthday. Bursting with gratitude, he begged his parents to share it with him. Of course, they refused. Instead, he made the chocolate bar last for weeks by unwrapping it every night and allowing himself only the smallest taste. He never wanted anything, as long as he had the love of his family.

My plan to have a Charlie of my own went out the window when Theo was diagnosed with PDD (Pervasive Developmental Disorder) at 2. He didn't speak yet, so therapists came to my apartment 4 days a week to pry words out of him. The main focus was to get him to voice his needs with the words "I want."

After months of work, Theo eventually learned to say "I want ___" before his therapists would hand him the toy or puzzle piece he asked for. But outside of therapy, he never asked for anything. In school, he would sit there until someone offered him milk, even if the rest of the kids had already lined up for theirs. His cousins would beg for toys they saw in commercials or demand flashy cars in the toy store. Theo asked for nothing, content with whatever we gave him.

Forget about my notions of the selfless Charlie. I wanted Theo to want. If he'd asked me for every toy in the darn store, I'd have given them to him.

Now, at almost 7 years old, Theo has no problem voicing his desires. And his requests are usually so simple and sweet, I'm happy to honor them. A new kitchen stepstool for Christmas so he and Melody would no longer have to share one. A pack of Uno cards. A lollipop. If I do get the rare big request, like going ice skating, you can bet we're going ice skating.


And now I switch gears to discuss kid number two. I always dreamed of having a boy and a girl. When I learned I was having a girl, already having had my boy, I only had one more wish -- for her to be neurotypical (a crummy word, but that's what we say in the special needs world). I thought if I could have that, I wouldn't complain or ask for anything else. Wish granted. When Melody started talking, out poured our tears of joy and relief -- particularly when she began to say "I want."

And boy, does this terrible two-year-old want.

From the moment she rolls out of her bed (currently a mattress on the floor because she wants...to not be trapped in the crib) she climbs on top of me, grabs my face, and starts hurling demands. "Hey, mommy. I want milk. I want juice. I want water." (Yes, she really does want all three. At the same. time.) Sometimes, if I'm lucky, she'll throw in a "Good morning."  Then it's all whining, all the time, for the rest of the day, 'til she loses the fight against sleep.

I spend my precious little time with my daughter either giving in to her demands (after squeezing out a "please") or ignoring her while I let the tantrum run its course.

And I think about Charlie. Where is my Charlie?

I want candy!
I want ice cream!
I want to go that way. No, thaaaaat waaaaaaaay!

I want. I want. I want. Melody's sense of entitlement grates on me. At the height of my grogginess, and therefore my flair for drama, it makes me fear for her future. What if she becomes one of those obnoxious spoiled brats who make my single friends not want kids? What if such a monster is spawned from me? Me, to whom good manners, gratitude and humility are so important!

Then I remember the promise I made. I'd never take it for granted if Theo would just talk to me, or if Melody could just be a regular kid. He does, and she is. She really, really is. And I pull them in close -- my special boy and my beautiful brat -- to make a demand of my own.

"I want a hug."

"Please."

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!

Ice, Ice, My Baby

When Theo's friend Logan invited him to his birthday party, I tried to think of other birthday parties Theo had been invited to. I could probably count them on one hand. Theo went from 0 to 2 friends last year. Both of the friends he found, Logan and Reina (who will get a blog post of her own) seemed to need him, too. No kid ever needed Theo before. So here he was, invited to a party--not because a kid was inviting everyone in his class or a cousin was obligated to include him--Logan genuinely liked Theo and wanted him at his party! And the best part--it was an ice skating party.

Do you recall our first and only attempt at ice skating last year? We had incredible fun, but Theo was unable to hold his own on the ice. I was curious to see how he'd do--a year later, his vocabulary and verbal comprehension were stronger--skills that seemed like they would matter to skating. One thing NOT better was Theo's balance. And so we would see. But I knew either way, we'd have a great time.

When we walked in, Logan's enthusiastic "Hi, Theo!" was music to my ears. His mom, Jenn, was good enough to pay for the kids to all have a 30 min coaching session. The kids learned how to fall properly, and then they hit the ice. I liked this rink because it provided helmets, something that Theo really needed! I'm pretty sure he took a couple of headers.

I automatically went into apologetic mode with the coaches when Theo did not get it right away. In fact, he was downright uncooperative at first and wouldn't stop giggling as he fell over and over. But pretty soon he was moving little distances on his own and two of the coaches were actually impressed! Coaches who teach beginners every day, impressed with Theo's progress on the ice? I felt great, and Theo felt great.


As the day went on, his confidence grew. A couple of times he went from one wall to the other entirely on his own! As many times as he fell, he never stopped smiling. I think both of us could have skated all day! Unfortunately, the rink closed early for hockey.


He never really skated skated--more like skillfully walked across the ice. But that's what kids are taught to do at first--hold their knees and march. We're going back this weekend and I plan to keep taking him, because I had as much fun as he did! I love skating! (But oops, one of the coaches corrected ME, telling me to bend my knees.) I really think he'll get it if we keep at it, and this will be wonderful therapy for his balance issues.

As far as the party went, thankfully gluten wasn't an issue. Theo gleefully chowed down on pizza and birthday cake, and loved singing to Logan. He didn't socialize with the other kids much, but he was clearly happy to be part of the festivities.

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!

CPSC Evaluation

Here's a play by play of yesterday's events.

Luckily, the morning started with a chipper little dude who had a good night's sleep.

He helped me make eggs, and he ate mounds of them. Joe said it felt like Sunday...it was nice to get a chance to have breakfast together on a week day.

Off we went to Birch, the evaluation site/school. It was happily close to home, the Vernon Jackson stop on the 7, and then right off the train. Knowing that, it became an instant contender for the school he ends up attending. But one thing at a time; we were here for the evaluation to determine if he needed the school in the first place, although we of course knew what the answer would be.

We went to a waiting area where a little girl, exactly Theo's age, was waiting with her anxious mother. I was instantly comforted, knowing we weren't alone. The kids' situations were practically identical. They both didn't talk, but were both very aware and very affectionate. Theo and Cristal, the little girl, were instant friends. They ran around together, and Theo took on the role of leader. Their communication was entirely non verbal, just smiles and sound effects. He would shake his head and jump. She'd imitate, laughing. Watching our children, Cristal's mother and I shared an unspoken, unnerving feeling of, "this is why we're here." For the moment, all that mattered was that the kids were having fun. And while I couldn't help but think of how other kids their age would be relating to each other, it also felt good, that for once we were in a room where Theo was not the least advanced child.

Our first stop was the social worker's office. Theo happily played with legos while she asked me a series of questions that I would answer many more times throughout the day, and that I had already answered a million times throughout the past year. How was your pregancy (perfect) what kind of delivery (vaginal, full term), family history, yadda yadda yadda.

Next stop was the best stop, the psychologist's office. Lillian had been doing this for 30 years, and she clearly loved it. She thought Theo was just the cutest thing and that he was a pleasure to work with. It was still early, Theo was still well-satiated from breakfast, and so he was at his best. When Lillian tested him, I realized just how much Theresa and Lorena, his therapists, had done in preparing him for this day. I tried to hold back tears as he successfully matched objects to corresponding shapes and colors.

Then there were the questions Theo couldn't answer, and I tried to remain calm and remind myself that that's why we were there. For example, she'd show him a group of pictures and ask, what do you wear when it's cold? Where do you go when you're sleepy? He didn't score on any of the function questions. But he did great on his body parts.

I felt good about myself as a mother, knowing my son as well as I did. I knew what he was capable of answering or doing and what he wasn't. Of course, he surprised me a couple of times and knew things I thought he wouldn't, which was even better. And I had feared that he would know more that he would let on, but that only happened a few times throughout the day.

After Lillian evaluated Theo she let him play with the cash register he was desperate to play with for the past hour, while we talked. I told her about the PDD assessment from a year back. She said she had been doing this forever, and that he is NOT NOT NOT autistic. The more Theo flirted with her, or ran out of the room and mischieveously peeked in to see if we were looking, or kissed me, etc... the more she repeated it with certainty. She had no doubt in her mind that he would need special services, and a lot of them. But it was just because of developmental delay, not autism. She recommended a full speech, OT, and PT evaluation, which we had later in the day.

I told Lillian I had an appointment with a neurologist next week with the hopes of them removing the PDD label. I asked if I should even bother going based on our conversation. She recommended going instead to a pediatric development specialist. Aunt Pia had said the same thing, you were right, auntie! This would be a person who would get to know Theo over the next few years and could better determine where he is. I still plan to keep exploring all those other thus-far dead end avenues, ear-fluid, tonsils, etc. The speech pathologist said he had swollen tonsils. But while I'm not ruling any of that out, I am starting to believe that he's overall pretty healthy and simply delayed. That there doesn't need to be a reason for it, he's just got catching up to do. But back to yesterday...

Next stop was classroom observation. Theo joined Grace's classroom. The kids were just finishing up their outside play. Theo went up the ladder, down the slide, up the ladder, down the slide, not paying attention to anyone. Even though I had just assured the psychologist that he loves playing with others at the playground. And he does...when he feels like it.

Grace's class went back to their classroom and were given drinks of water, and took turns going to the bathroom and washing up for lunch. The kids were all introduced to Theo as a visitor, and they were so cute saying hello to him and offering him water. He was very happy to sit with them, drink with them, and even throw his cup away as they did.

The classroom, and the school even, was a very normal place...nothing out of the ordinary. If I didn't know beforehand, I'd never have known the place, or even the children I observed, were different. Again, I was comforted. That's Theo. Normal kid, just slower to develop in language and motor skills.

Theo ate lunch with the kids. I loved seeing their mom's prepared meals layed out. Egg rolls here, rice and beans there, pasta and sauce there...it was an ethnic smorgasboard. Quite lovely to see. As long as all communication is in English, which it is. As they ate Grace walked through a typical day there with me...again, very normal preschool stuff. The only difference being the extra work done with speech, OT and PT.

Went back upstairs to meet with Anthea, the speech pathologist. At this point Theo was exhausted, having skipped his nap and working so hard, and so he gave very lazy, sleepy answers, if any. We decided to hold off and go to the physical therapy portion, where he would wake up again through playing basketball, going on a swing, jumping on a trampoline, etc.

I thought Theo would shine and have no problems at all with PT. But they even found things there that were not up to speed. Jumping, ball throwing, ball kicking...all needed work. The PT was followed by OT, occupational therapy. Michael, the OT teacher, had also observed the PT, and thinks that Theo has low muscle tone. It's why he slaps his feet when he runs, grips with flat fingers and not curved, and locks his limbs. At the time it was all tough stuff to hear, but as I sit here writing this, I realize this is all stuff I worried about being autism related. I can deal with words like low muscle tone, or developmental delays...those words were already pretty much a given anyway. The idea is to work on those delays and get caught up for school. This is the most important developmental time in Theo's life. I feel good that we're taking action now and not when it's too late.

Back to the speech pathology office. Theo was still tired. He refused to label items that I knew he could identify. Luckily, Anthea came with me to watch Theo do the PT and OT, and she learned a lot by observing him there. And so she understood he was just tired. After all, what else can they expect? We got there at 8:30 AM and it was now 3:30 PM. A full day of work for Theo.

From this last series of tests Theo did fairly well in using items properly. He fed a teddy bear with a spoon, gave him a drink with a cup, and made appropriate sound effects. However, he didn't do those things on command, just on his schedule. The exhausting part is, for every single little thing he does, it requires the analysis: Is it because he's 2? Is it because he's tired? Is it something more?" But no matter the reasons, one thing is clear - and this was a unanimous vote - Theo will need to go to one of these schools. Possibly this one.

I liked this school, and hopefully can reserve a spot for them there. Last night, Lorena came over. She spoke very highly of this school, Birch. I told her what an emotional, exhausting day it was for me...she's on the other side, she does evaluations. She told me they are required to take a seminar to deal with what parents are going through. She said some break down, some get angry, some cry.

As for me, I know I cried through happy moments and unhappy moments yesterday. Someone took away the PDD label. Hooray! At times I felt like I was in a separate universe, but then we'd see Cristal and her mommy walk into a room that we just left. And I imagined all the mommies at home making those lunches the way I will be for Theo. I realized how alone we'd been with this up until now. Having the support of loving family and friends has been invaluable, but I'm really looking forward to the new support system for my son and for me that will come in a few months.

Everyone was wonderful. The staff, the kids..especially Theo. He worked so hard yesterday. They all commented on what a good boy he is. Last night, he walked in from the kitchen carrying a whole cake and a fork. I let him go at it.