Asperger’s Syndrome. Pervasive Developmental Disorder, Not Otherwise Specified. Call it what you will, but it all adds up to Autism, and my 6-year-old son, Ivan, has it. Before I understood Ivan’s behavior, it horrified me. His chubby little 3-year-old face would contort while he wailed, as huge teardrops fell down his cheeks and nose. Then there was the noise that accompanied his meltdowns. Guttural, unbearably loud–like a fire truck siren–and just as alarming. No matter what I tried, I couldn’t make it better. I simply learned to ride it out.
It took going to three different specialists to finally get a diagnosis that made sense for Ivan. He had High Functioning Autism (“HFA”). Now we had a label, but what were we to do with it? How do you parent a special needs child that, for all intents and purposes, looks perfectly normal from the outside? Sometimes I wished there were a big, neon sign that hovered above his head and flashed “Autism… Autism…” so that everyone would stop judging us when he melted down.
Everything changed for us when Ivan was invited to attend our school district’s special needs preschool. With small classes, ample trained aides, an amazing staff and speech therapist, it’s not an exaggeration to say that Gateway Preschool changed our lives. Here’s how.
The Gateway Preschool staff taught me that handling Ivan’s meltdowns wasn’t so much about discipline as it was about anticipating problems and addressing them before they made themselves known. In the early days, the biggie was learning to re-direct. If I saw Ivan getting upset about something or a situation, I needed a Plan B and then I need to get him moving in that direction, quickly.
As I grew closer to Ivan, I learned how to read him and his responses, and I learned to interpret the subtle cues that he had had enough and was ready to move on. I realized that I couldn’t just take a toy away when it was time for bed, and rather, I had to give him a heads up that bedtime was coming. Now, I call it “The Ten Minute Rule.” Ten minutes before an assigned activity is supposed to end, you have to communicate the change to your child so that they can anticipate it. Then, five minutes later, you remind them. When the time finally comes to end the given activity and begin another one, you are met with very little resistance, because they knew it was coming and have grown accustomed to the change in their mind. In the beginning, I would set a timer, but, thankfully, I was able to phase that out.
Another thing that I learned was to prepare Ivan for changes in his routine, like going to the store. I would inform him ahead of time instead of just showing up. Our life, by necessity, became deliberate, and with that deliberation and understanding I grew stronger. Life gradually got better. I cannot over emphasize how important early intervention was in my son’s development and my own re-discovery of sanity.
Without the meltdowns and the sensory issues clouding my view, I was able to see Ivan as he truly was and rediscover my sweet son. He is silly, impulsive (like his momma), and smart. Really smart. Learning how to handle Ivan’s tantrums was a complete paradigm shift. Now, when he melted down, I knew that he was overstimulated and it was time to change things up–by leaving a busy store or sitting in an empty room with him until he worked it out. Perhaps most importantly, I realized that we weren’t the ones with the problem when people would snicker or offer unwelcome advice. Ivan was not a problem child. I was not a bad parent. Simply put, Ivan processed things differently, and, as his parent, I needed to follow suit.
Thanks to a wonderful school system, I am now able to parent my special needs child. And it has definitely been a team effort. As Ivan has aged, and priorities have shifted, we added a behavioral analyst to our team of support. Now, it’s not a problem to go to the store or out to eat at a restaurant.
Ivan, and my husband, and I, all had a thing or two to learn about living with Autism. But the main thing was that underneath the façade of anguished meltdowns is a just a sweet child trying to communicate.
To those parents who are just now beginning to muddle through the first few months following a special needs diagnosis, I want to tell you not to allow yourself, your family, or your parenting to be defined by how complete outsiders and strangers view your situation. Their opinions are meaningless and, more likely than not, uneducated. At the center of your world is a child who needs you. Go out there and advocate for your child and for yourself. Get them involved in Early Intervention. If they need additional therapy, sign them up for it, but don’t forget yourself in the process. Find a support group and go to it religiously, preferably one where both you and your partner can attend.
Finally, be patient with your child, with yourself, and with your situation. As it is with parenting in general, and in particular with a special needs child, there is a learning curve, so don’t beat yourself up over trivial matters. Take it from someone who has been there: It will get better.