19 January 2012 ~ 18 Comments

The Divining Dragonfly: My Journey With Autism (Part 1), by Cindy Caprio

Sarah: Back in December, I announced that we are welcoming aboard a new guest columnist. This is her first column … a moving account of her personal experience with autism. I know that this is something with which several of you can identify and I’m very happy that Cindy has chosen to write about this as I feel that it is a topic that lacks understanding and about which we desperately need to raise awareness.

Birth and infancy

A mother’s intuition is one of the strongest vibes I have ever experienced. When my beautiful baby son was born he wasn’t crying; they laid him upon my chest for a few seconds as he stared at me wide-eyed with his blue eyes and then the nurses swept him away. I was so nervous that he wasn’t crying – was there something wrong? It turned out he was a very healthy 8.7 pounds. As the nurses were taking his vitals, they continued to comment on how alert a newborn he was.

The two days he spent in the nursery, the staff nicknamed him “little Houdini” since he always managed to make his way out of those nicely wrapped and snug swaddles. I also remember a comment from the pediatrician, telling me how amazed he was at how alert and inquisitive my baby was in comparison to the others in the nursery.

Breastfeeding was a nightmare for both of us. I was persistent, but he wasn’t. He was uncomfortable at every possible angle, continuing to cry and refusing to latch. I tried my best when the doctors recommended I supplement with formula as well since he wasn’t doing so well with the breastfeeding. He wasn’t interested at all in being held and fed. Every time he finished a bottle, his knees would go to his chest and he would cry in agony – his digestive system was not happy at all. The feeding problems continued for a couple of months, I pumped my breast milk and we must have changed formulas and bottles about a dozen times. We finally seemed to manage his gas pains with a soy formula and a specially designed bottle to stop gas bubbles from forming in the bottle.

We were at the hospital being dismissed, I had my baby in my arms and he was screaming so loudly – he just cried for what seemed like hours while I was waiting for my husband to get the car ready for us. I tried everything – rocking him, singing to him, walking him around, swaddling him, even feeding him a binky (pacifier/dummy). You name it, I tried it … and nothing worked.

Once he got home, he was a very cranky, colicky baby. The only thing that would stop him from crying hours on end would be those “Baby Einstein” videos. He was mesmerized by all of the funky lights, music and colors.

He chose not to co-sleep or to sleep in his cradle; he was actually turning himself onto his side and stomach. During the first few days of being home, we tried a wedge inside his bassinet and that didn’t work. After becoming afraid he would smother himself against the wedge or turn on his belly and die of SIDS, we discovered he got his best sleep during the first six months when placed in his car seat next to my bed.

When the pediatrician told us it was time for the crib, we cringed. We were unsure of how this would go, but it worked out beautifully. The only strange thing was this six-month-old baby learned how to make his way from the head of his crib to the foot of his crib during his sleep. “How did he do that?” my husband and I asked each other? After finally catching him in the act, he learned if he could bring both of his legs up and slam them down onto his mattress, he could move himself. This became a “regular” thing for a very long time. He always loved his crib, and from that point on he finally became a good sleeper.

I had always noticed “quirky” things about him, but didn’t think it was anything to be concerned about just yet. He wouldn’t play very much. He didn’t like to be held. He became fixated on spinning objects and lights. He seemed happy in his environment. However, once he was taken out of that comfort zone, that’s when things would shift.

He started the “terrible twos” at 18 months, had no words and would grunt and point if he needed something. If I couldn’t understand him, it was so difficult and frustrating for myself and for him. He would hit, bite, throw fits and cry uncontrollably due to his inability to communicate. I stayed home with him, trying to do the best I could – I knew this would give me the opportunity to get him around other children. I was also hoping that I would meet other stay-at-home moms whom I could communicate with. I felt so sheltered.

From infancy through age two, I persisted on taking him with me to several classes such as, “Mommy and Me” exercise and play centers, “Tots ’n’ Sports”, music, story time at the library. I just couldn’t get him to be interested or to interact like the other babies; he was always “different” and never wanted to participate. I would always leave with him crying and screaming at the top of his lungs. At the time I didn’t know why he was crying … all the other babies were having so much fun giggling and bonding with their moms, and here I was with an unhappy, crabby baby. I always left early, feeling like “that mom” and so isolated that other moms wouldn’t want to friend me because of my child and his social delays. I would leave crying once I left the building. I would cry all the way home, so depressed and no answers to what was going on. At the time he wasn’t diagnosed yet and I didn’t dare mention my son’s “issues” to anyone. It was something my husband and I kept to ourselves as we figured he was just colicky and would grow out of it.

 

… to be continued …

 

You can read Part 2 of this article here

 

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