Ten fingers, ten toes, seven pounds two ounces and the perfect specimen of a tiny human. William Vincent Kearney, was born on September 3rd 2011.
My darling boy nursed like a champ from day one, healthy happy and huge. We were in love, the spitting image of his father with his serious brow and mischievous grin. William crawled late and walked early. Soon after he learned to walk he was EVERYWHERE. He would climb up anything, he would case the perimeter of a room he had never been in before and unplug things, take things apart and generally wreak havoc. Typical of a boy I thought.
Shortly after Lily (our 3rd child ) was born, things changed. William was almost 2 and a half when my husband mentioned that he thought William’s speech was behind that of his peers. He’s a boy, I would say, boys develop slower. I was in newborn baby fog (sleep deprivation) and hadn’t gotten out much to notice. When I did start to get out to the park and to play dates I realized that William was severely behind in speech, but not only that, he never looked at me when he did speak. More concerns began to arise, he would have meltdowns at the park and try to bang his head on the concrete. I remembered having to ask my very pregnant friend to hold my infant daughter so I could stop William from injuring himself and hold him tightly until he calmed down. He cried, I cried, people stared. It wasn’t the first time an incident like this had occurred and I knew it wouldn’t be the last. Something was seriously wrong.
We took William to have a speech evaluation and sure enough he was a year behind where he needed to be. My heart felt heavy but determined to get my son whatever help he needed. Oddly enough, the same day my darling next-door neighbor, Loretta (a first grade teacher) asked if I had gotten William evaluated through the school district yet. You can do it through the school district? How great, I thought. Loretta told me that once a child turns three it is the school district’s responsibility to get your child ready for kindergarten and address any special needs with a specialized education plan FREE OF CHARGE. I made the necessary calls and the evaluations were scheduled. At the first evaluation, the Psychologist said the words, “Autistic like behaviors”, my heart stopped. I had a hard time hearing anything after that. But he doesn’t walk on his toes, or have ticks, and I can make him give me eye contact if I really try! I tried to make sense of it in my mind. As I watched him run crazily around the evaluation room, unable to attend to a task or follow any sort of instruction, I knew the psychologist was right. The date was set for the first IEP (individualized education program) meeting to discuss the plan for William’s education needs moving forward. It was a lot of information and I recorded the entire 90 minute meeting on my phone and listened to it more times than I’d like to admit. I was excited that William would be getting the help he needed but nervous about my little guy being away from home so much.
William started his special preschool class a month later, from 9am until 2pm William was at school, he loved it. However, little by little things began to change at home, he would scream and fight to get on the bus and when he got home he would try to run across the street instead of going into the house. He was too rough with his sisters and would constantly act out in aggression. This is getting worse I thought. Finally, I put in a call to his teacher, Miss Launa, the miracle worker. I gave her a rundown of the going ons, she said it was normal. Now that he has to follow a schedule at school he will act out at home to fight for control. Launa asked me if we had gotten a diagnosis. A diagnosis? For what? Wasn’t having an IEP enough? Launa suggested going to a neurologist to have him evaluated for Autism Spectrum Disorder. By getting that diagnosis it would open doors and allow insurance to cover ABA therapy. When I hung up the phone I made an appointment, and then googled whatever the heck ABA was. Applied Behavioral Analysis, the number one treatment therapy for Autism Spectrum disorders. I found the approach interesting and intriguing. There are only four functions of behavior? Really? The four functions of behavior are; sensory, attention seeking, gaining access to an item and avoidance. Just four, that’s it. It really opened my eyes and something suddenly clicked. It made it easier to understand why William would have a particular behavior and how to deal with it. Our beloved therapist, Miss Ashley, has worked wonders in addressing different behaviors in William. Different behaviors come and go and it’s all a part of the process, and I’ve learned to just trust the process. It has been 15 months since William has started school and he has exceeded and surpassed every goal that they have given him. It has been incredible to watch the transformation in our son, we knew he had it in him all along he just needed a little extra help.
Our neurologist, Dr. Rebecca Garfinkle, was a dream. Dr. Garfinkle evaluated William in about 10 minutes and while I thought the appointment was a disaster she said it was something she saw regularly. So most children draw on the walls and run out of the office three times, eat paper and almost break the blood pressure machine? Perfect. William’s full diagnosis report came a few weeks later, Autism Spectrum Disorder. I remember sitting on the floor of Barnes and Noble crying and eating a brownie, pouring over a pile of informational, Autism books. I had seen it coming of course, but you have to grieve. Autism, he has it, it’s real. A new facet to life, a new reality. I allowed myself to fully embrace it. Let’s do this Kearney, I thought. I will be your champion, William, I will seek to understand the essence of who you are my son, and how your brilliant mind learns. And you know what? I do. I see the road blocks in his mind, where he gets stuck and how to guide him around it. It’s not easy, some days are really hard and someday are blissfully uneventful. What this little boy has made me realize is that all you need is for one person to fully get you, to really see you and accept you. William gets to have that because I understand why God gave me William. Because grace. That boy is a glorious being, a sweet, incandescent, rambunctious human who has changed my life forever. Utterly sanctifying is the plight of a special needs mom. That is not a pity seeking statement but one of reverent privilege. According to the Centers for Disease Control and Prevention (CDC) 1 in 45 children are diagnosed with Autism Spectrum Disorder. It’s not something to be afraid of, these children are not to be avoided or ignored. Embrace them, know them, love them and you will forever be changed.