I remember it being an almost mild and rather calm winter day when we got the word from our son’s school. This was two days before the Mayor of Chicago would shutdown the city due to Covid-19. There was a lot of talks about Illinois postponing the elections after hearing that Louisiana had just shut their election down. Europe was going into lockdown and there were reports that the Louvre museum in Paris was closing until further notice.
We were concerned about all the recent events that were going on, but were also wondering about the findings in our son’s behavioral evaluation. My son had displayed some development issues around 6 months old and they had carried over to the time he was about 18 months. My wife had her suspicions early on, but I just believed he needed a little more time. When he was going on about 2 years old and he still wasn’t speaking more than a few words (probably less than 20 words), I yielded my hopes and started looking for answers. I came across a yelp review for Chicago Speech Therapy and it was positive and along the lines of the signs we were noticing. I read a few more reviews as well as their website and gave them a call. My wife and I met with their team that next week and we had him enrolled and attending the following month. Through their work with him for about 2 hours Monday through Friday, they were able to notice signs that he might be on the spectrum.
Which, if I’m being honest, was a hard one to hear. I don’t believe I got irate or anything like that — I was just numb to news like this and I just didn’t want to believe it.
That afternoon, we were expecting to hear the results of his evaluation and whether or not he was on the spectrum of autism.
Shortly before noon that day, we received word that our son was indeed on the spectrum for Autism.
I actually thought I was prepared for the moment, but it probably took a few months for me to fully understand the gravity of the diagnosis. After all, we had long suspected our young boy was not following the traditional path. While at the age of two, he was affectionate, happy-go-lucky and extremely bright — he was also struggling to speak beyond two or three word phrases and would happen upon a word or a song and get stuck there with a seemingly endless ‘repeat’ button — replaying the song or the word over and over again. He also had some small fine motor skill difficulties, highly anti-social, and some other challenges that we would later learn are all associated with autism spectrum disorder (ASD).
It seemed ironic that our son would lack what the rest of his immediate family had in abundance. I worked in the public sector and unsuccessfully ran for public office a couple times and had no problem speaking with people or getting to know someone. His mother leads a 15K membership group and often speaks in front of large audiences. To say that we weren’t social was inconceivable.
That would all change.
You see, what other kids naturally develop over time — grammar, innuendo, body language — my son would have to study as if it was learning a new language, except it would be the one he would have to learn, because the only one who understands his language is ‘him’.
So the lessons began in earnest — for all of us, really. I took him to a speech therapist there twice a week for one hour and she taught us the building blocks of what we had been taking for granted. Piece by piece, she laid out the connecting fragments that we hoped would one day be the means through which our beautiful little boy could both find and express himself.
After about a month or so, we began getting some comfort and the routine became a little less overwhelming. My son’s schedule became a little more consuming with medical appointments and assessments and therapy sessions magically squeezed into my calendar. However, I also realized that my boy was starting to find his voice. It started with a couple words, then I noticed he was focusing on what I was saying a little longer, then he started responding… It was amazing to see the turnaround.
Watching my son’s trajectory has often been fascinating. Hearing hard-earned words, phrases or constructs pop out of his mouth, after months and months of methodical teaching, coaching, and practice gets HUGE rounds of applause from his therapists and his family! You should see the triumphant grin on his face. He knows he just nailed it! I never thought I would be throwing a parade for a correctly selected pronoun or a subject-verb-object composition, but that is the way it is with autism: words are like gems dropping from your child’s mouth — every one of them, a graduation ceremony.
It’s pretty clear that developmental milestones with my son will never be mapped in a slow, steady upward arc of achievement, as with most kids. His development lags and sprints in abrupt and unpredictable bursts. For example, while my son struggles to answer simple yes or no questions, like: ‘Did you have fun today?’ he can easily count to 100 and even count to 1000 by 100s. He also knows how to spell and write his name.
Never would I have predicted this path. And, I often say it to friends and anyone who asks me about my career resume and personal journey. However, its my road and I walk it willfully and with sincere gratitude. You see, when your eyes are opened to the plight of others — and there are so many — you never see your walk the same again. You throw away concepts like ‘normal’ or ‘the way it is’ and you embrace possibility like a religion.
No one works harder than a child who is challenged to walk or talk or eat, yet still they engage the world playfully and lovingly and with this since of belonging. Its been amazing to witness.
I may have placed my aspirations to the side for a while, but that need is slowly giving my spirit broader range, more depth and strength, in a stoical like manner. That being said, I’ll continue to embrace these days.