Sunday, February 7, 2010

Early Concerns to Autism Spectrum Diagnosis, the First Year

Our oldest son was diagnosed with Asperger Syndrome at the age of 5 years. For me, it was in many ways, a relief. An explanation for what was from the start, a difficult transition into parenting a child. A reason for the problem behaviors that were so hard to work through with our son. An answer to some of the puzzling questions about J.

While the timeline begins to fade from view, there are still many memories that come to mind when thinking back to the first days and months with J., now nearly 8 years of age. He was our first child, and despite my experiences working as a pediatric nurse, often in the Newborn Special Care Unit, the beginning of motherhood was rocky and unfamiliar. My recovery from his birth was painful and it was accompanied by insomnia, anxiety, and difficulties with breastfeeding.

We brought our son home from the hospital about 36 hours after his birth. We could have stayed another night, but I requested an early discharge, thinking that I would be able to sleep better and be more comfortable at home. Sleep problems continued, and breastfeeding was difficult and painful. My doctor prescribed Ambien to help me sleep for the first couple of weeks. I was put on antibiotics about 10 days after J.'s birth for a urinary tract infection. Though my postpartum symptoms gradually improved, the antibiotics I was taking seemed to make my son very irritable. At 2 weeks, my son was still below his birthweight, but only by an ounce. He received his first vaccination at this time, for Hepatitis B. I went to see a lactation consultant to work on breastfeeding, which continued to be painful. The irritability continued, but we were hopeful that things would improve once I had finished the course of antibiotics.

The lactation consultant, a pediatrician whose practice focused solely on breastfeeding medicine, diagnosed thrush as the cause of painful breastfeeding. We supplemented my son with about one bottle of formula per day to help him catch up a little with weight gain, but she was not overly concerned. I pumped while his father fed him the bottle every evening. My son began gaining more quickly, but I noticed that the formula seemed to make him more irritable at night, so we stopped it quickly. Through reading internet sources and speaking with the IBCLC, I quickly became aware that I had far more milk than I needed for my baby. Though my son wanted to nurse constantly and for hours on end, he choked with every letdown, clamped his jaws, pulled and tugged, and had some serious diaper blowouts. He grew rapidly in both length and weight. He continued to be very colicky for the first 4 months or so.

The IBCLC referred to my son as a "Zero to 60 baby." He could go from asleep to screaming bloody murder in about 3 seconds flat. We tried Mylicon. We tried gripe water. Nothing seemed to help much. He also earned the description of "one of those babies that swears." We wanted to practice attachment parenting, but this high need baby was a serious challenge.

There were a few concerns in the early months that, in retrospect, were probably sensory in nature. While my son did seem to have a great enjoyment for music, he certainly seemed to hate the mobile that I had chosen for him, at least at first. When I placed him under the mobile he would scream and look away. When the mobile was detached and he only heard the music, he was more likely to be calm and listen briefly. We also had a "Kick and Play" type gym that he seemed to enjoy occasionally, but he would kick it with so much force that it would quickly slide away from him. One he had teeth, he chewed his toys more like a puppy than a baby. I could not believe the deep gouges that J. could put into a teething toy. I shudder to think of what types of plastic he probably ingested.

As the months passed, J. began to meet some developmental milestones, seemingly in timely fashion. But something didn't seem quite right. He rolled over maybe once or twice by the time he was 6 months old. Generally when placed on the floor, he would flail helplessly like a beetle that was turned onto its back. He would scream until I picked him up. Tummy time seemed like a wonderful way to make him very angry, very fast. But he continued to meet gross and fine motor milestones on target. Sort of. For example, he did go through the motions of crawling, briefly. But what he mainly did was drag himself around on his butt. When he learned to pull himself up and cruise, that was pretty much the end of any attempt at crawling. At 12 1/2 months, he began to walk.

However, speech was a different story. Our son made a lot of sounds very early on. When he was a few months old, a nurse who helped run a mother's group I attended pointed out how my son was very attentive to the conversation. I looked at J., and saw that he was following the conversation around the room, turning his head and fixing his gaze directly on whoever was speaking. I recall taking him for his 4 month checkup. He was babbling away, having a wonderful conversation in baby-talk. The nurse said "He's going to talk early." And she was right. At 7 months, J. uttered his first word. My husband noticed it before I did, but I didn't believe him. Then I saw J. look up at a photograph on the wall of our dog. He said "Kay-ee." My 7 month old son had just said the name of our dog, Katie. And he knew exactly what he was talking about. By 9 months, my son had a half dozen words under his belt, and his speech was quite intelligible.

During the second half of his first year, my son continued to nurse very frequently, though the marathon sessions were slightly less frequent. I started him on some solid foods, mainly preparing my own baby food in batches. We used some organic jarred food occasionally. I tried to introduce a variety of vegetables and fruits. We also made a homemade porridge from brown rice and later added a few types of beans. He liked sweet foods but introducing new foods was very difficult. Being anxious to see him cut back a little on the constant nursing, and not realizing the importance of developing a taste for a variety of foods, I simply mixed the new foods with banana or sweet potato. Things that he already liked hid the new foods. By the time he was a toddler, mealtime was beginning to become a battle. But even with his preferred foods, we noticed some difficulties. As a toddler, J. began to eat preferred foods very rapidly without chewing. Sometimes he would overeat, vomit his entire meal, and then ask for more food.

Speaking of battles, somehow J. missed the memo on naps for babies. While my son slept very well between feedings at night by about 6 months of age, daytime was a whole different matter. In the early months, it was difficult to move him at all once he was asleep. I would nurse him to sleep, then slide him from our bed into his cosleeper, at which point he would immediately awaken. He would scream until I nursed him, yet again. He slept in our bed for a while, and when I caught up on my own sleep, I tried moving him to the cosleeper again. Eventually we worked that out, and we all rested better at night. But I still found the lack of a clear napping pattern to be quite frustrating. He would sleep, but wanted to remain latched on the entire time he was asleep. By the time he was approaching one year, I managed to work in an afternoon nap for J. through a combination of cry-it-out and using a pacifier. Eventually he could be transitioned from breast, to pacifier, to crib. It wasn't an easy feat to accomplish, though. For the record, I no longer believe that crying it out is an answer to sleep problems. At the time, I felt desperate for just a little time to myself, a brief reprieve from the very intense 24-7 of parenting J.

To be continued...


  1. Thank you for sharing this journey, I am learning so much.

    You are such a strong woman!

  2. I really enjoy you sharing this part of your life. Very enlightening and heart-warming. BTW, my DS will nurse all night too if I let him. We are making progress with sleeping in the crib though (minus CIO).