After my post about arginine, we had a visit with the geneticist and nutritionist. Here is how they explained the very complicated systems involved in arginine metabolism and production: the body can make its own arginine. If Sam isn't eating enough protein, or if she over eats protein (ie has 20 grams instead of 13) her body will start making its own concoction of amino acids through the Urea cycle and some arginine will be produced. So the whole thing is a big teeter totter balancing act. The number one best way to keep the teeter totter leaning to the safe side (not making guanidino acetate from arginine and thus building up toxins) is to keep creatine and ornithine in her system. If we do this, the little bit of arginine she will eat in her 13 grams of protein a day should cause no problems. They did however admit that it's not a bad idea to do my own research and educate myself on foods that are very high in arginine. And if I know a food is high, like chocolate, peanut butter, raisins... then definitely avoid it! Basically, educate myself to make smart choices, but don't bother counting milligrams of arginine. Done. Inner geek satisfied. I will try not to bore you with this mumbo jumbo anymore, but there are other moms (three now) who are dealing with the same questions.
This year has been an amazing whirlwind in my life and by far, the most rewarding year of my life. It's such a unique perspective that I've been blessed with to notice every little tiny thing going on in Sam's life and enjoy so many celebrations along the way. It's normal human nature to hear your baby's first approximations and think "she's starting to talk! woo hoo!" and then just let most of it "happen" without noticing every critical step that she accomplishes. Who ever says "my child put on a final consonant today!!!!" and then cries with relief? Yes, it's hard, trying, exhausting, etc. but the joy I have felt watching my daughter progress this year is very hard to match. I am so thankful at this time of year for my many blessings, but I will admit that Sam's diagnosis is at the top of the list this year. I can't even explain why, but for all these years I've had faith that Sam would progress. That she wasn't simply "autistic" or in some other way unreachable- even while loved ones proposed "accepting her for how she was", I knew she hadn't reached her potential. It wasn't an angry or blind denial, it was something more. I am so thankful for that spirit of comfort that I've enjoyed over the years and I am especially thankful now for the amazing progress that Sam is making.
In the official study on GAMT that we received from our geneticist, it mentioned that out of the small initial group studied, many had made improvements in behavior but noone had progressed in speech enough to say ten words. Again, I read this and thought "whatever..." it didn't really phase me. And now I am ecstatic to say that this week Sam started putting together three word phrases such as "more apple please", "help me sock", "want bar please", "bye bye daddy", etc. I officially cannot list how many words she has.
Last week her teacher told me that the initial state of awe during class had worn off and a bit of a behavior problem has begun as she is starting to get bored. She can't do the work the other kids are doing because she's behind, so she's on the outside of things even with the materials I am sending in for her. This got my mind racing for ideas of how to help and I decided a week ago that my kids should stop watching TV. I know, I know, I've done this before. My sister-in-law agrees that it's good to de-tox your kids by taking them off TV for awhile. But this time it was more complicated. I decided that Sam now has so many skills, that it's crazy that her language component is lagging so far behind (she is recognizing numbers, colors, shapes, letters, basically meeting all her IEP goals from just six or so weeks ago). And I recognized TV as her escape from listening to the real world and from communicating with me. It was hard for about a day and now noone is asking for TV. Trey woke up to find all three kids sitting on stools lined up in a row listening to Ellie "read" a book to them. It's tons of little social and listening based things that have changed. So, what do you know, six days into it, Sam has made a huge leap forward in her progress. This is of course skipping the first change in speech which was the before mentioned final consonant. About three weeks ago? she said "booK" and pointed to the closet we keep the bedtime books in. It was the first "consonant, vowel, consonant" word she has pronounced clearly (not counting repetitive consonants like "dada", etc). Before it had been "boo" and I understood based on context and pointing, etc. It really felt like her first word when she said it. Her voice was pure and real and it was amazing to hear. Now she has moved onto two syllable combos like "buckle", two word phrases like "more please" and now three word phrases. Will someone pinch me?
So now tell me, should I "just accept her as she is" or be a crazy, granola, weird mom that puts my child through kooky activities, takes away the TV, makes her listen to therapeutic classical music listening programs, feeds her smoothies three times a day and creatine cocktails six times a day and swears she won't stop trying?
I think every parent plays a critical role in their child's progress through life and their overall potential for happiness. I'm honored to be playing that role in the life of a little angel who is, to me, as sweet and pure as a newborn fresh from heaven. Merry Christmas.
