ASD and Hyperlexia

Our life and Autism - PART ONE

For us it all started when C was 17 mos (July, 2002). Well actually it started before that. C was a hard, hard baby. He was our first baby and was birthed naturally with the assistance of our midwife at the Medical Center at Princeton four weeks early (when my water broke at work). I had one incident of spotting and was anemic (very anemic post-partum) but that was it as far as complications went. 5 days after he was born he went under bili lights for jaundice, high bili levels. WE nursed and nursed and nursed. At 4 weeks he started vomiting... everywhere. And he had colic. I suspected GERD, my pedi thought it was stomach virus. At 4 weeks he aspirated while nursing. Two days later, during a Barium swallow, he clearly had GERD/Reflux. Pretty bad in fact. The pedi didn't encourage me to keep nursing and encouraged thickening a hypoallergenic baby formula. By 10 weeks we had stopped nursing completely and started f/t on thickened Alimentum and Zantac. But still he never really slept well. He went from having to sleep in a his infant car seat strapped in (which we kept between us in bed those first few nights post-aspiration) to sleeping in a bouncer to sleeping with the head of his crib mattress elevated. C was never a sleeper. Period.

By 14 months he was still sleeping poorly. Developmentally he was a slow crawler (10 mos but we atttributed that to the reflux, well the vomiting as soon as he was prone actually) but everything else seemed OK. His first words were at about 10 months, walked at 13 months. He wasn't talking a ton but did have about 15 words at 15 months. Our pediatric gastroenterologist ordered an Upper GI to rule out casein (milk protein allergy) at 15 mos. We had to give him whole milk for 2 weeks prior to the study (a total change from the enriched soy and rice milks we gave him). By day 10 he had diarrhea so profusely I thought he had Rotavirus. I pleaded with the GI doc to just call it a + protein allergy and let me stop the whole milk but he insisted on sticking it out for the sake of the test. The day of the scope was pretty intense because he was a bit on the dry side and was a difficult I.V. stick (finally done on 5th attempt by anesthesia by the way ,to my horror, as an I.V. nurses). The scope was + for casein allergy and reflux. (Gee. Really?)

At 17 mos things were much better so we saw our pedi for our routine check up/shots/etc. En route to the visit my dh called me on the cell and pleaded with me NOT to have any shots during that visit, that C had been through enough. I poo poo'd him with an "Oh Johhhnnnn." See, John was upset that C would be receiving the "controversial" MMR during this visit.

During the visit the APN wanted to "catch him up" on his shots so he rec'd his missed 15 mo and future 18 mo shots. And it was on this day that we saw a major change in C. He lost what speech he had (speech cessation), became more "disconnected" if a 17 mo can do so and actually developed full blown measles 5 days after his shots (his shots were Thursday. Monday he woke covered in Measles). Not a few measles spots. His measles covered him head-to-toe anteriorly and posteriorly. The pediatrician said it was fine, it wasn't real measles or he'd be REALLY sick. I asked about reporting it as an adverse reaction, he was said it was not. He was sick for about two week with Measles. Two weeks. But it wasn't real measles, said the pediatrician. It was when he started to perk up a bit that we noticed he had lost what little speech he had. Now he had NO words.

By 19 months I requested intervention and he started in Early Intervention in NJ for speech therapy. At 23 months he spoke his first word...again. It was "hi." That was his only word for a while. At 2 years + we saw a developmental pediatrician who felt he had some delays but would not diagnosis him at that age, preferring to wait for diagnosis until he was at least 3 years old. At about 27-28 months we found out he could read words. Shortly after his sister was born, when he was 26 months, I sat in his room playing on the floor and drawing on the chalkboard. Being in full-on speech therapy mode I was working on speech with him. I would draw a picture on the chalkboard and write beside what the object was. To my shock, he was reading most of the words I wrote.

Initially we thought these were just words he recognized from the repetition of me writing these words OR he had actually retained some of the information we fed to him early in his infancy. See I have to confess, we were typical new, neurotic parents. We were full aware given my husband's IQ/giftedness that C may lean toward the gifted side. And I was bored. I worked up until the minute my water broke so being a SAHM was shocking. I filled some time of our wonderful, amazing baby days doing the Doman Method with C and if I played a video for him it was one of the Your Baby Can Read videos or Baby Bumblebee videos. Infant education was huge for me.

I was also the type of parent that only fed my child organics and natural foods (starting him on avocado as his first food per Ruth Yaron's recommendations in Super Baby Food). Yet medically we followed the traditional route (why wouldn't we? I was an RN). My biggest disappointment to this day is that I listened and stopped breastfeeding him.

We moved to Florida when C was 2 years 9 months. At 37 months he was dx'd by the psychologist with Early Intervention here with Pdd-nos/hyperlexic trait. Pdd-nos means he was at the high functioning end of the Autistic Spectrum. Hyperlexia is the "precocious ability to read." However at 3 yo he no longer qualified for ANY services because he "scored too high."

And that's when we began to realize everyone was AS confused about Autism and its'
spectrum as we were.

I'll be back with more ........