"Your kid has Autism...Good luck with that"...by Kirsten

Well, I *thought* my pregnancy with JC was "normal", but looking back on it in hindsight I guess there are some things that were not. First and foremost, my father passed away when I was 6 months pregnant. It was a horrible, stressful, grief-filled time in my life. My pregnancy helped to keep me going and as upbeat as possible, but I am sure that my body was releasing a ton of stress hormones. I also got a flu shot and the Rhogam shot:( Knowing what I now know, I NEVER would have done that to myself or my baby, but I can't blame myself for that now (or I can at least TRY not to, right?). I also had high blood pressure toward the end of my pregnancy & I was bloated like a beached whale!

JC was an almost 9 pound, healthy baby who was born right on time. He seemed to be developing well, but (just like Rachel wrote) we struggled with projectile vomiting. We took him to the ER at around 7 weeks & he was diagnosed with reflux & put on Zantac. At the time I was breastfeeding & did try removing some things from my diet. I was not very knowledgeable at the time about all things biomedical, so I gave up & just figured that if the DOCTORS said that JC had reflux, then it must just be reflux. UGH!

JC was a very early developer in all ways. He rolled over at 2 months, crawled at 5, walked at 8.5 and I swear he said "hi" when he was 4 months old! He first "real" words started coming at around 7 months & he was saying things like "octopus" at 10 months! I was convinced (and still am actually!) that we had a little genius on our hands.

I can't really pinpoint a time when he regressed or when I thought that something was definitely 'wrong'....was it after his 12 month shots? Maybe. I do remember clearly that he was speaking and interacting well before that point. The summer after he turned 1, we started to notice his obsession with concrete things like letters, numbers, colors & shapes. He LOVED Baby Einstein videos. They were like baby crack for him. He probably could have watched them 24 hours a day if I let him! The first time he counted to 10 was the day before he turned 15 months old & I remember being so proud:) Little did I know at the time that my budding genius would be diagnosed with Autism 2 years later.

Right before he turned 2, he started reading. We could not believe it! It was completely self-taught & amazing to witness. We told our pediatrician about it, but he didn't really say much. Years later, while looking through medical records that I had gotten when CHANGING docs, I saw that he had written "hyperlexia". If only he had said that word to me at the time, I could have been researching and intervening at an early age. But since we can't rewind time, I try not to dwell on the past & just look toward the future. I am convinced that it will be a good one, but more on that another time.

We started Early Intervention around the age of 2.5. We noticed that JC was not interacting with other kids & we were nervous. He didn't lose language, but in hindsight we realized that he had gradually lost joint attention (no more pointing to things & looking at us to see if we had noticed...no more bringing us things just to show us...). He also wasn't responding to his name without a lot of prompting & hardly noticed that his baby sister was born. Even though my husband and myself both work in the education field (often with kids on the spectrum), we still didn't think he had Autism. I mean, he talked & had a huge vocabulary, he liked hugs and kisses, he didn't 'stim' like other ASD kids. Believe me, it was a HUGE learning experience for us. It is so true that "when you meet one kid with autism, you meet ONE kid with autism"...all of these people are so different from one another!

We finally got in to a developmental ped after JC turned 3 and got the dreaded "mild/moderate autism" diagnosis. Although we were told that he was probably very intelligent & that he could probably make progress, we weren't even given the hope of recovery at that point. We were told not to let him sit in a corner by himself, but to do SOMETHING. We were told ABA wasn't appropriate for him because he was "too verbal and too good at learning"...huh? We were also told that the GFCF diet was a load of crap & not to even bother trying it because it is too hard to implement. It was all along the lines of "your kids has autism....good luck with that".

So guess what I did??? I got a book (by Dr. Bock) and started trying the GFCF diet! I made an appointment with a local DAN! doc (who is also a general practitioner) & got some testing done. We started some therapies, school, social skills classes, OT...

Did we see results? YES! We have now been doing GFCF for 13 months. We have been to a few DAN! doctors and have tried many different supplements. About 9 months after the diagnosis, we brought JC back to the original Developmental ped & she looked at him, looked at his chart (back and forth a couple of times - I felt like it was a scene from a movie!) & said that they must have misdiagnosed him! He was "upgraded" to Aspergers Syndrome & we were told (and this is written on his paperwork) to get him tested early for gifted education.

We still have some ways to go, but I am happy with our progress so far. We just had JC's parent/teacher conference (he is in a typical preschool program/daycare 4 full days a week with 15 hours of PCA support, 1 hour of speech, 45 mins of OT)...the teacher said that he has made so much progress since last year & that his progress has been rapid these first 2 months of school. She expects it to continue this way & we agree (insert *positive thinking* here:)).

Our current & recurring issues are:
Intermittent Constipation
Low frustration tolerance
Anxiety
Obsessiveness (numbers)
Rigidity (usually related to things being in 'order')
Social interactions with peers


Our current biomed treatments are:
GFCF diet with goal toward removing SOY
MB12 nasal spray
Glutathione transdermal
Magnesium Vit C
Cod Liver Oil
CoQ10
Carnitor
MethylAid (B vits, TMG, folinic)
Biotin
P5P
Calcium
rotated Yeast tx (Ketoconazole, Diflucan, Biocidin, GSE)
Probiotics
Zinc

I agree with Rachel that this would be so much harder (and more lonely) without my ASD Moms Rock friends. I have learned so much from each of you & your little guys. I want them healed as much as I want it for my own guy. I know we can get there together.