The story of CJ6 and TR2 by Sue

It was 20months ago that CJ6 received an official diagnosis of autism from the developmental pediatrician. He was 3 1/2 years old at the time, but we had suspected something was just not right a year before the diagnosis. CJ6 is now 5 years old and we are seeing gradual improvements due to aggressive biomedical interventions, and ABA therapy. My mantra is that in the race of life, CJ6 is the turtle rather than the hare. Of course, we all know who wins the race in the end! Putting my son's autism in this perspective allows me to hold onto hope because I don't expect miracles everyday. When the miracles do occur, I appreciate every little milestone!



I also have a 2 year old son, TR2. CJ6's younger brother has great joint attention and social skills for now, but has many worrisome red flags. TR2 has a complex medical history and his lab results suggest that he should be on the spectrum, but we are doing our utmost to prevent that from happening!



I will begin my story back in August of 2003, when CJ6 was born. We were anxiously awaiting the birth of our firstborn son. The pregnancy was uneventful, even though I had gained 56 lbs. A few days before the due date, the obstetrician measured my belly and was concerned that the child might be 11 lbs. Despite having been a 10lb 9 oz baby myself, I was horrified by the prospect of delivering a football player. The OB suggested that we do an induction the day before the actual due date. At that point in the pregnancy, I was sooooo uncomfortable that I was totally psyched to have it end! When I arrived at the hospital at the scheduled time, I was already having mild contractions and I was dilated 4cm. Theoretically, I could have waited a little longer, but they began me on a pitocin drip at 6am. Since this was my first child, I had no reference, but I thought that the contractions were very strong and asked for an epidural at 7:45am. Epidural can slow down labor, but I did not care because the pitocin was speeding it up. At some point, the fetal heart monitor began to drop, and the nurses rushed into the room. They turned me on my side and rocked me violently. CJ6's heartrate jumped backup. I was stunned and inquired about the incident. I was told that the baby sometimes grabs the umbilical cord. What? Are you serious! There is something inherently wrong if the child is choking themselves in utero. Survival of the fittest came to mind and I thought that if a child is grabbing their own lifeline, then maybe they were never intended to survive. At noon, I was fully dilated and began pushing. The contractions were happening so quickly that it did not give Cj6's head a chance to turn, so he presented "sunnyside up". By 12:45pm, CJ6 had arrived into this world. He scored a 9-9 on his apgar test and after he was swaddled, he immediately latched on. Both my husband and I were amazed that the delivery went so smoothly since our childbirth class informed us of so many horror stories. 30minutes after CJ6 was born, his face turned blue. I panicked, since we had a family history of heart defects. Once we unwrapped him from the swaddle, we realized that the rest of his body was pink therefore his heart was fine. His face turned blue because it had been bruised by my pelvis during the strong pitocin contractions. For the next 2 weeks, his face remained swollen and we could not see his eyes.

I exclusively breastfed CJ6 but at 2 weeks old, I gave him a bottle of Similac. My milk production did not seem to be keeping up with his demands. Occasionally, I would give a supplemental bottle, but it became more frequent around 4 weeks of age, when he broke out in a rash. I was told it was eczema and to treat it with Dove soap. There was no mention that eczema might be related to food allergies. At 6 weeks of age, he had such a severe case of cradle cap that we were sent to the dermatologist because CJ6's eyes were shut closed for 2 days. The dermatologist did mention that cradle cap is caused by the body's hyper response to yeast. This information was somewhat interesting since I was a biology teacher, but in reality, I only cared that my son was getting better when we used the topical steroid oil! For the next 2 months, CJ6 was colicky. The pediatrician placated me, a first time mom, and claimed that 3-4 hours of ear curling screams was typical. Only in retrospect did I figure out that it was occurring during the supplemental feedings. We tried all brands and types of formulas. I tried eliminating gassy vegetables such as broccoli and cauliflower from my diet. We even tried gas drops, but nothing seemed to help. After Halloween, CJ6 broke out in bumps. The pediatrician thought that it might be from eating the chocolate and to eliminate it from my diet. Recently, we discovered that CJ6 is IgE allergic to peanuts. Thinking back to that Halloween, I realized that I ate a lot of the coveted Reese's peanut butter cups.

At first glance, all developmental milestones seemed to be met. CJ6 sat and rolled over at the right times. He started to sleep through the night at 4 months old. He began army man crawling at 7 months, but never achieved the hand over hand method before he began to walk at 10 months. By 11 months, he was running and he never looked back. Crawling was so inefficient, and I didn't dwell on it because I was doing my earnest to keep pace with his running.

It was at this same time, that we moved to NY state. I needed to find a new pediatrician as well as a daycare provider because I needed to go back to work for financial reasons. I was terrified to leave my child with a person I did not know well, and focused on interviewing childcare personnel. Since I quickly needed to make a 12 month well visit, I randomly picked a pediatrician from a large practice because they offered late night and weekend hours. I had obtained a copy of CJ6's medical records from the previous pediatrician and I brought them with me to the 12 month well visit (2 days after his first birthday). I took a picture of him eating cake at his birthday party, but after this well visit we started to see feeding issues arise. Only now, have I realized that the new pediatrician gave CJ6 an extra 4th dose of Hep B which he should never have gotten. Another interesting point to make is that CJ6 does not make Hep B antibodies even after the extra shot. During my pregnancy, the OB checked my titers, and I don't make antibodies to Hep B either. I had a series of 3 Hep B shots when I was in college. Even TR2 does not make Hep B antibodies after having had 3 booster shots.

At 14 months, I recorded that CJ6 said his first word. It was "tickle". We used to tickle him into fits of giggles, holding back until he said the word. Now, I know that this is actually an ABA technique. Individual words followed, and at the 18month well baby visit, I was asked if he knew 50 words. Of course he knew 50 words, he could count to 20 , so that was at least 20 words right there and he could state every letter of the alphabet, so that was another 26 words. I was not asked if he was using words in a meaningful purposeful way. I was not asked if he pointed or would drag me to an interesting object. I was not asked if he would spontaneous hug me. I was not asked the right questions !! I was also back at work, and by moving, we had lost contact with other children that were the same age as CJ6. I was isolated in my own little world with no one to compare CJ6 against. This existence was short lived bliss. No one had applied the word "autism" to our family.

CJ6's feeding issues were not little issues in my mind. He would not feed himself, but was fine with me scooping up baby food. He would only pick up certain dry foods. He would forcibly gag and puke on both of us if he did not want to eat. Feeding would end with both of us taking baths! At first, I thought that this child was stubborn and I had met my match. Then I began to think of metabolic reasons for not eating certain foods. As a biology teacher, I was constantly lecturing about metabolic and genetic diseases such as PKU and fragile X. At the 2 year well visit, we met with another pediatrician in the same practice, and I mentioned my concerns. I was afraid that we missed a metabolic disease in the newborn screen when we moved states. PA only required 10 tests and NY had just mandated a new law with 41 different tests. I also suggested the possibility of food allergies, but was told that he was growing so I should not be concerned about the picky eating habits.

6 months later, my mother was watching television, and an excerpt about autism came on. My mother listened and started to say, wow CJ6 does this and CJ6 does that. She mentioned it to me, and I quickly slammed down the phone. How could she think that there was something wrong with my perfect beautiful baby boy!? On another day, and another phone conversation, my mother claimed that she could not make eye contact with CJ6. I retorted back that she needed to get down on the ground and play with him. Of course, my mother was 74 at the time and had severe back issues. Getting down on the ground was out of the question. Little did I know that I had been doing Floortime technique with CJ6. I was now becoming angry and hurt. I agreed that CJ6 had feeding issues and was able to accept the idea of a sensory processing issue. My mother suggested that I have Early Intervention check him out and let them decide if he had a delay or not. I agreed since the evaluations were free of charge.
Since we lived in NY, Early Intervention only runs up to age 3 and after age 3, the school district is responsible for the evaluations. Since CJ6 was 4 months shy of 3, a representative from early intervention told me to wait until he turned 3 and have the district evaluate him since they would be doing all their own evaluations anyways. Can you believe that!!! This women wanted me to wait during the child's most critical window of recovery!!!
I also needed CJ6 to have a doctor's referral. Since he was not yet 3 and had not been sick, we did not have a reason to see the doctor. I was told that I would need to pay $300 to have my son's paperwork filled out. This was incredulous! Persistence is the name of the game, so I called back, and got a different secretary, who very nicely filled out the paperwork free of charge. This is was the beginning of being a squeaky wheel!
In the meantime, as the 6 month window of Early Intervention evaluations took place, my mother talked to a friend who happened to be an OT and she suggested that I read "The Out-of-Sync Child" by Carol Kranowitz. This book made sense to me. Charlie had oral hypersensitivity, as well as tactile sensitivities. I had never realized that when he tripped at the beach or on the playground or at the Easter egg hunt, that his skydiving posture of immobilization was due to a hyperprocessing of tactile sensations. Wow, this lady made sense, so I googled her and found out that she was presenting in NY. I immediately signed up for the conference. I still did not believe that were dealing with autism. Sensory processing was a much nicer way to ease into it!

I need to take my sons on another medical roadtrip tomorrow, so I will continue my sons' history later in the week.