The Divining Dragonfly: My Journey with Autism (Part 3), by Cindy Caprio

You can read Part 2 of this article here

I began and completed part 3 of my five-part column in April, Autism Awareness month. This is about my son and our ups and downs with him having autism.

My boy turned three in February. It was during this time he was making the transition from Early Intervention Services into a Special Needs and Inclusive Pre-School. This is a school that is mostly made up of children with delayed development, but also accepts a certain number of kids without development problems to act as role models to the children with special needs.

Although TLC was diagnosed with PDD-NOS (Pervasive developmental disorder not otherwise specified, one of the three Autism Spectrum Disorders) it still took a lot of perseverance to get him into this school. More tests, observations, meetings with the staff at this school and having to gather all the information needed from the pediatrician, his behavioral therapist, and Early Intervention.

Having all the facts and recommendations in writing was crucial in helping us to get him enrolled in this school. The wording and professional jargon was very difficult to understand, but luckily for us his EIS (Early Intervention Services) Coordinator came with my husband and myself to support us.

An IEP (Individualized Education Plan) meeting, particularly your first one, can be quite intimidating. Make sure you do your homework and prepare to become an advocate for your child. I was confident TLC would qualify and get services from the school, but all the stress leading up to the meeting sometimes led to self-doubt. Luckily for us, the meeting went a lot smoother than anticipated and they offered us several services.

TLC had a lot of things that needed to be addressed: speech (receptive and expressive – i.e. what he understands versus what he says); self-regulation (i.e. the ability to control environment or state of mind); low tone (due to his weak core and weak muscles, as well as a very “flippy/floppy” left side that is related to the low tone); possibly neurological anxiety; frustration; upset in changes to his environment and transitions; sensitivity to sound, light, crowded places and general sensory overload. TLC has poor Gross Motor Skills (i.e. the abilities usually acquired during infancy and early childhood as part of a child’s motor development); his body posture is weak due to his low tone; he walks on tip toes, which is common with kids on the Autism Spectrum, as is walking stairs one step at a time instead of a regular stair-walking motion which he still does. His play skills were at a very immature level and he did not know how to socialize with his peers and instead tended to play with grown-ups.

Entering school that winter, TLC knew some words but they were sporadic and unintelligible and communication was still difficult. I was so nervous sending my little man off to a school; we had such a bond with us staying at home together and with the second year of him and I attending all the EIS (Early Intervention Services) it was something the two of us had gotten very used to. This was it. He was off to the hands of strangers, the small white public school van came and picked him up and off he went. Everything seemed out of my hands. I cried – they were tears of happiness because I knew this was the beginning of a fabulous journey for him and our family.

He adapted to school quite well, most likely because he thrived on routine and structure. Routine and structure seems to be a common thread amongst kids and adults with an ASD (Autism Spectrum Disorder).

From February to June, we saw so many amazing things happening before our eyes – not so amazing to people with “typical” kids, but for us they were leaps and bounds! It made us realize how lucky we were to have gotten TLC into Early Intervention Services and transitioned him into this school when we did.

For the first time at the age of 3½, we heard him say “mommy” and “daddy” clearly without mumbling. He was struggling to say his own name; he was responding to his name but just couldn’t say it, so they taught him some sign language which helped. They started working with him by putting his hand on his chest and saying “me”. Then eventually, with a lot of therapy, it turned into “me TLC”, and finally they helped him drop the “me” and the hand to the chest so he was able to say his own name – that to me was the most amazing thing because he had struggled so hard to do this. Imagine being a child or an adult and someone asks your name and you can’t get the words out. How frustrating that must feel! Frustration and agitation is another part of autism and I think it’s because of the emotions these children and adults are unable to express verbally and sometimes on an emotional level. Again, I am not an expert, just a mom talking about my own experiences and the knowledge I have gained along the way in my journey with my son and his struggles.

Springtime was coming and one of the most awesome things happened – TLC went on a swing in the playground and LOVED it. That was thanks to the Sensory Integration they did with him during his therapy. Sensory Integration helps children get used to certain sounds and movements that bother them. They did it! Those therapists helped him adapt to the swinging motion! He had hated swinging since he was a baby; didn’t like to be rocked, going in a bouncy chair or even the baby swing. I had tears streaming down my face as I watched him giggle way up high, trying to reach the sky with his little feet. He was also learning to roll a ball back and forth due to his work in Physical Therapy. He never even knew what to do with a ball before attending this school.

At the end of the school year, we were really pleased with his progress. Although most of his words were still unintelligible, he also had a lot of words that we could understand. He had made progress with his Sensory Processing Disorders, but he still had a lot more to work on. We were pleased with his Occupational and Physical Therapy, but he was still about two years delayed in these areas. We had another IEP (Individualized Education Plan) meeting in June, and the team of specialists and teachers agreed that my son TLC qualified for a part-time morning summer program with the school system and that he could return in the fall. This was music to our ears!

Sending your child with an Autism Spectrum Disorder to a special summer program with the school (if it’s available to you) is so important for many reasons. First of all, it keeps them in a routine, structured environment. It helps them not to regress regarding speech, socialization, gross motor, and fine motor skills. It’s also good for helping them to learn independence and confidence.

This was a busy summer for both of us. At this time I chose to start working as a pre-school teacher in a corporate, highly structured and academically strong day care/learning center. My main reason for taking this position was for the love of children, and to get my son enrolled into the same center with me. My goal was to get him as involved as possible in between both summer school and the learning center. I took a huge pay cut and most of my money went towards his tuition at the center I worked at since we didn’t get much of a discount. But I made a sacrifice to help him become the best TLC he could be. I was so excited for both of us. I in a position I loved to work; my son enjoying his experiences at both school and the center.

I also had him in Physical Therapy and Speech Therapy two to three times a week after work. He did not like going and would fight me every time, which was so hard for me to deal with, but I got it into my mind that he had to do this. After all, if I didn’t help him now, the “three-year window of opportunity” would be over.