Preventing Autism 102

Quinn is about to turn 2. By the time his big brother Kai was 2 we were starting on our journey into autism. We can't help compare. Autism is too serious not to.


Quinn's c-section started off perfectly, somehow, he was lodged in so deep they had to use a vacuum to assist his exit. That is, a vacuum assisted c-section. He did not cry right away. All You have when you are laying there is waiting to hear the baby's cry. I waited, waited, waited and there it was WAAAAAAAAA WAAAAAAAAA WAAAAAAAAAAA. What an incredible feeling! And just like that my bubble was popped. The neuro on call stuck her face too close to mine to tell me "mom, we are going to take him for some testing and observation" huh? What is going on? Of course, I was half drugged and out of it. My obgyn was finishing my surgery as I stayed there helpless. The hubby had instructions to follow Quinn at all costs.


I was never able to enjoy the pregnancy in fear it would be a third miscarriage. All I wanted was to hear him cry and know he was ok. Now this. In the recovery room I stayed with one of my friends. We did not talk about the birth in detail.She was not saying much and I was this drunken woman trying to slur my words and make sense. When was this woozy feeling going to leave? My husband finally appeared after what seemed like hours. He promised they would bring the baby soon. I asked him what had happened. He said, "something is wrong, we don't know what" I asked " down syndrome?" (because my BIL has DS) he said " don't know". Speechless. I still felt drugged from the surgery but I knew this sucked.


To fast forward through the drama that was the delivery, here is the shorter version. When he was born they felt his head was too big, his ears too low ,has an undescended testicle, and because he has a patch of blond hair on one side something could be wrong. They took precautions and did a sonogram and drew blood for genetic testing. All eventually came back normal. He had a little bit of jaundice and had to go home with a bili blanket which he kept for about a week during which he had to keep going in to get blood tested etc. I was anxious for this to be over to finally enjoy my baby! Well, he is going to be 2 and I still have not been able to rest and enjoy him like a normal mom.


He has always been below the percentile. Steadily growing but way low on height and weight. It felt like it took forever for him to reach 10lbs. Trying to join programs like My Gym or Gymboree was useless because he was never in his age group and could never participate.


He did not sit until he was about 11 months, babbling started at 12 months, pulled to knees at 21 months and just now at 22 months started to crawl. It has beem a long year of OT, PT and ST. He has been to the 3 pediatricians, an orthopedic surgeon, a hematologist,urologist and a neurologist. All testing comes back normal and the only explanation is that he was hypotonic: low muscle toned. In my research obsession, while reading on autism for Kai I found an article that most kids with autism have a MTHFR mutation. I had Quinn tested for it and it was positive. Took it to the neuro who was more insulted that I had found that before he did than worried about what it could mean. Ultimately, the hematologist said most people have a mutation and don't know it, was not concerned and sent me on my way.


We live day in and out watching for autism clues. Worried that he doesn't point, his occupational and physical therapists both assure me that he could not possibly point because that entails isolating his finger and he is not there yet ...physically. It seems that he is delayed in all areas equally. He is not a cuddler who lays his head on your shoulder or chest often. The only other thing of concern is crossing of his legs when on the high chair and mounting his middle finger on his index finger on occassion. Subtle. Does it mean anything? who the heck knows. Maybe I am looking too much into every single thing.


Here is what we know. He is awesome! He is a very social baby. He loves to smile at everyone, wave hello and goodbye, sign for 'all done' and 'more' , loves hugs, kisses and has amazing eye contact. Does not cry at sudden sounds, is ok with change, eats pretty much anything, loves getting messy and textures, notices small sounds and is always happy. The best part of my day is going into his room in the morning. He always has a huge smile for me and is so genuinely happy to just be. Yet, we cannot sleep at night because we are afraid his delay might be autism. We won't know for at least another year.


Right now he got accepted into an intensive early intervention program. It meets for 4 hours, twice a week. It s a baby bootcamp to get him up to par with his peers in the hopes he can start a typical preschool at 3. The rest of the days are filled with two 1/2 hour PT sessions, two 1/2 hour OT sessions and one 1/2 of speech.


He eats a mostly organic diet free of gluten, casein,sugars or anything processed, takes nutritional yeast supplements, on probiotics, vitamin D, folate, cod liver oil and flax seed oil. Other than his delay he is very healthy. He has never had an ear infection in these first 2 years and he has been sick perhaps 5 times total. By sick I mean 2 days of sneezing or coughing and maybe a runny nose. He almost had a fever one time when it reached 100 but it went away as soon as it came.


As parents of 8 year old Kai (ASD) we cannot help but micromanage Quinn's everything. We are doing everything and anything to prevent autism. Dodging the autism bullet is not easy when it seems you are genetically predisposed to it. At this point we are still running. We are exhausted!