By: Cyndy Muchine
All I heard was PDD-NOS. Now, I know how to hyphenate it.
Who knew these letters would cripple my brain for a minute! I never once thought to track my children’s milestones. NEVER! Until this fine day when I took my son (second child) to his two-year appointment. His pediatrician quizzed me on his do’s and don’ts based on his age. I giggled through my replies thinking, okay lady, let’s get this done so I can go home before traffic. Well, she implied that his vocabulary was minimal and that I needed to sign him up for speech. Yeah, sure. Are you paying? were some of the thoughts that raced through my mind. She gave me a brochure that had beautiful blocks. I went home and did not think too much about it.
After one visit by an early childhood professional, I noticed something about my son’s eye contact. He was in his own world. Immediately, I went there! I went to the word “Autism.” I drove to the famous Barnes and Noble bookstore and read the symptoms page only! I came home replayed the symptoms over and over while watching my son’s every move. I diagnosed him. During his second therapy appointment, I nudged the therapist who continually declined to share her sentiments. This was due to legal implications. I completely understood her point. She quietly recommended I visit a clinical psychologist. I did. After two to three hours of testing, I could see the truth through the psychologist’s eyes. She delivered the news. She called it PDD-NOS (Pervasive Developmental Disorder)–now known as ASD (Autism Spectrum Disorder).
I went home in denial. He was about two years and five months at the time. After a couple days, I decided to take the bull by its horns. I accepted the diagnosis. I began reading, filling out forms and surveys, and doing tests upon tests. I became friends with every neurologist, therapist, and receptionist at The Children’s Hospital.
My breakthrough came one fine day, upon visiting the developmental pediatrician and supplying him with all documentations. He told me to delete the label PDD-NOS and teach my son how to cope with society. BOOM!
I cried in his office because he had cut off the chains, the label, words I couldn’t even write.
I knew exactly what to do. I decided to educate myself on this mystery.
I had another child to worry about but thankfully, she was older and neurotypical. I know that sounds like a “phew” she can survive, but I was worried about her. How was I going to be on the go 24/7 and handle her at the same time? She was a child and needed her mom too. I was a single mother at the time, and I literally wondered why Autism had been sent my way! Why? I don’t know how I did it, but I know the grace of God got me through every waking moment.
Potty training was staring me in the face. I decided to handle one thing at a time. This took a whole year and some but with diligence and consistency, we did it! We celebrated and had a poop party! OMG, only parents of ASD kids get this nasty-like party.
Gradually, with lots of speech therapy and occupational therapy, I began to notice changes in how he connected sentences. Things began to make sense for him and more so, for us, so I thought. One day, he decided to open the door and disappear! He could not answer to his name at that point. Of course, this nightmare seemed like a lifetime but a good Samaritan was able to locate him and bring him back to me. Talk about a narrow escape with the law? What else did I really need at that point, right? I began teaching him how to answer to his name, but this was not working properly. Leave it to the professionals and sure enough, a wonderful therapist joined us and taught him how to respond to his name.
As time elapsed, I noticed that my daughter was beginning to drift away and resent her brother because of all the “attention” he was receiving. I searched high and low for someone to watch him so I could have alone time with my daughter. He was a feisty little thing and this made babysitting rather difficult. Not even family wanted this piece of the pie. That was hard to swallow. Finally, someone recommended a thing called respite services! I was lucky to find a very understanding individual who had a background in Autism and aggression. I began spending a couple hours a day with my daughter and our relationship got stronger as I explained reasons why I was “unavailable.” She understood but she didn’t, such a mixed bag of emotions.
My kiddo will be sixteen in April and I cannot rewind the years and things we have been through. I would never want to have an aggressive child, ever! It is hard to watch your child wrestle with his emotions because he has no idea how to process them and distribute them evenly. Autism is complex. When information cannot be broken down easily, how do you expect one to communicate and socialize? Explain that! This is the battle my son goes through on a daily basis but I am very happy to report that he is now verbal, very loud, and has a very sharp brain. He is currently using all the therapy techniques he learned on us! We have clear instructions on what to touch and what not to touch. When to shush and when to speak. We laugh so hard instead of crying all night. Things have become rainbows and skittles, no longer a lingering cloud of hopelessness. Occupational therapy has paid off and he is now a pro at using Play-Doh as a calming too. I hate Autism, but I love my son with my every being!
As we come into the month of April, let us create Awareness and Acceptance and Inclusion. Let them into your world too as you learn theirs because we all need a chance at life!