I knew something wasn’t right from very early on. My son Vincent was barely a year old but he wouldn’t look at you in the eyes. He wouldn’t respond to his name and he wouldn’t look where you pointed. I had a gut feeling that something was wrong.
Could these be early signs of Autism? I told myself I was overreacting and that he would soon grow out of whatever was going on.
When he started falling behind with speech milestones and stopped babbling altogether I started to worry more. Friends and family told me that boys often started speaking later and not to worry.
He would repeat the word, yeah, over and over and over again refusing to say anything else. He would pace and walk laps around the house every night. When watching TV he would rock from side to side endlessly, completely zoned out to the rest of the world. That feeling in my gut grew heavier and heavier.
Whenever I worked up the nerve to talk about autism with my family they would reassure me nothing was wrong. They would remind me how loving he was and how he loved to play with other children. Surely such a social kid couldn’t have autism. Sure he wasn’t talking but he must just be a late bloomer, I was overreacting.
The more research I did the more I became sure I wasn’t overreacting. He wasn’t hitting his developmental milestones like his peers were, I knew it was time to talk to his pediatrician.
I brought up all my concerns to his pediatrician during his 15-month check up. I filled out an autism questionnaire while the doctor examined him. Once she was finished his exam and reviewed the finished questionnaire there was no doubt.
Her look said it all, she said she wanted us to see a specialist. She had concerns about his development. When pressed she said he was displaying clear signs of Autism. I fell apart.
I was overwhelmed with guilt and fear. All the guilt I had about being a working mom came rushing to the forefront. Surely if I had been home with him this wouldn’t be happening. I was scared he would never be able to properly communicate. Scared about what his future looked like. I couldn’t even say the word Autism without breaking down into a flood of tears. I was convinced that I failed my child.
The process to see a specialist who could diagnosis him with autism was a long one. But lucky not as long as it is for many people. Within a week, we enrolled him in speech therapy where they told us he had a severe express and receptive speech delay. They said he couldn’t understand what we were saying to him and he could express himself to us.
The speech therapists told us that he may never overcome these delays. I became even more scared for my son’s future but I was determined to do whatever was needed to help him. We started weekly speech therapy while waiting to see a development psychologist who could make the official diagnosis of Autism.
Within two weeks of Vincent starting speech therapy my husband and I had to go to Louisiana for a month long Army Training exercise. We were very restricted on contact with home due to the intensity and type of training. I could barely focus on work. All I could think about was my baby. While I was in Louisiana my mom sent me a video of Vinny using the sign, more, to ask for more french fries. I was so happy I couldn’t stop crying. It was small, but it was something. It was a small bit of light in a very dark room, it was hope.
We had an appointment with a developmental psychologist at Vanderbilt within days of returning from Louisiana. They were enrolling children from military families into a study on the effects of very early intervention therapy on children with Autism.
After speaking with us and observing Vincent the doctor gave us her findings. Autism. It hurt to hear those words, to know that it was official. That my perfect baby boy had this hurdle that would affect him in unknown ways for the rest of his life.
They wanted to enroll him in their study where he would receive one on one ABA therapy for 20 hours a week. But there was a catch. The study required the therapy take place in our home. A month prior would this would not have been an issue. My mom had been living with us and acting a full-time nanny. But we decided to try a different arrangement and enroll Vincent in daycare.
We thought that it would be better for him to be enrolled in daycare where he could be around his peers. We hoped it would help his speech and communication skills. By the time we were seen at Vanderbilt my mom moved out and was already working another job. We didn’t have the money to hire a full-time nanny. We weren’t able to work out an arrangement with Vanderbilt and lost the opportunity to participate in the study.
Losing that opportunity was difficult but we had to move on and find another alternative. After much research, I found a wonderful ABA clinic in town.
About three months after his official diagnosis Vincent started attending ABA therapy. He was only able to attend 3 sessions week lasting 2 1/2 hours each. This was less than clinic recommendation of about 20 hours a week. But with our work, negotiating the ability for my husband and me to leave to drop him off and pick up three days a week was a monumental task in itself.
Between attending speech therapy and daycare Vincent had already shown massive improvements by the time he started ABA therapy. He continued to improve at a rapid pace. Going from using a hand full of baby sign language signs to communicate to sentences in a year. He can now point at objects and follow your point, he answers to his name so many other things.
In a year he has gone from being considered low functioning to being considered high functioning. He’s a completely different child. He’s engaged with the world around him and most importantly he’s so happy. He still has a lot of work to do. And he may always have challenges that he will need to overcome. But I no longer worry about his future like I did a year ago.
We still have difficult days. Those are the days I feel the guilt and the fear begin to creep back into my mind. But now I am able to tell myself that being a working mom did not cause this. It’s not my fault, its no ones fault. I’m hopefully that he will be able to live independently and live as close to a “normal” life as possible.
A year ago I couldn’t even say the words, My son has Autism, without breaking down. Today I realize that autism is not some death sentence, it’s not some scary monster that wants to take my baby away from me. I now look at it as another way of being and of thinking. It’s not wrong or right, it’s just another way.
My son is still perfect to me. Despite the fact that he still has trouble looking people in the eye, flaps his hands when he’s excited and shows other typical autism symptoms. Autism does not define who he is and he is not his diagnosis. He has autism, it’s a part of what makes up who he is. It is not what he is, and that is an important distinction for me.
My intent in sharing this story is to help any other parents who find themselves where our family was a year ago. As well as share how important early intervention is when it comes to autism. Research has shown that children who receive early autism intervention show greater improvement in their communication abilities and social skills, as well as an overall reduction in autism symptoms.
It’s difficult to admit that something could be “wrong” with your child. It’s easy to play the wait and see game. Or just deny it completely until it’s impossible to ignore. It never hurts to bring up any concerns you have to your child’s doctor. It’s not a black mark against your parenting and it doesn’t mean that your perfect little baby is no longer perfect.
Below I have listed some resources that discuss the early signs of Autism. I highly encourage parents to become familiar with these signs;
Autism Speaks has an online version of the Modified Checklist of Autism in Toddler available on their website at: