Written by Rafeef Samo.
When Autism crash-landed on our doorstep in late 2013, we were blindsided. We knew little about Autism and our firsthand experiences were limited to children of acquaintances. Our son did not meet the so-called “typical” definition of a child with Autism, at least we did not think so. Martin was a happy baby, quiet, yet “normal,” and had met his baby milestones. There was no indication that anything was “wrong” until he passed his second birthday. His speech was not progressing, he stared off into the distance often, and hated to be around others, preferring to play alone, or stick to his immediate family members.
When we got the diagnosis, we had no idea how we would broach the subject with family and friends. There is a stigma about Autism, that they are damaged goods and their parents were to blame. The fact that I am a first-generation Arab American did not help matters. People could not understand what I meant when I first said Autism, in English, or in Arabic.
This diagnosis changed everything, but we continue to be grateful.
The ignorant comments: “So what is he is brilliant at?” or “He won’t eat? Starve him, he will learn.”
The efforts to be optimistic: “While God takes something away, He gives you something in return. Your son is so artistic, he could make you millionaires.”
And sheer nerve of strangers: “My dog is better behaved than your son,” and, my personal favorite from an older relative, “If he will not stop screaming, I will stick a needle in his tongue.”
These comments have been astounding.
In almost four years, I have heard it all. Sure, it took a while to develop thick skin, but I could not care less. My husband and I decided that our priority was the health and well-being of all of our children. This diagnosis changed everything, but we continue to be grateful. We are blessed to live in a city where Autism services are spectacular and plentiful, in a school district that is a benchmark for others across the country, and have wonderful health care that has provided in-home and center-based therapeutic services that transformed our child.
Regardless of the “what-ifs” and “why mes,” I firmly believe in God’s plan for my family and it is this faith that has empowered me.
As scary as it was to embark on this journey — as overwhelming as it has been in over three thousand hours of home, office, and school-based behavior, speech, occupational, and physical therapy — I would do it all over again, in a heartbeat. We jumped in, headfirst, and never looked back.
I had dreams of what my future looked like, and Autism forced me to bid them all farewell. Our relationships with friends and family suffered (and probably still do), our finances took a hit with an extra $1,000 a month just in co-pays and only one breadwinner, and our health took a backseat, but all that mattered was creating a safe space for our child and a roadmap for our three children to have a fulfilling childhood and dynamic relationship. And we have thus far succeeded. Regardless of the “what-ifs” and “why mes,” I firmly believe in God’s plan for my family and it is this faith that has empowered me.
Autism is still a daily struggle, coupled with Martin’s additional diagnoses over the last year, but we keep moving ahead, even with two steps forward and one step back. We laugh a lot, we have dear friends, and we have found ways to connect with Martin that has brought him out of his shell. Our family is well on its way to thriving with Autism.
Do I wish my son did not have Autism? Absolutely. Do I want a cure? Wouldn’t you? Do I get jealous when I see kids his age doing things I wish he could? Sure, but not so much anymore. I am tremendously thankful for what I have, not in possessions, but in perspective. Autism and all, we are the lucky ones. Martin may never be like any other kid, and that is exactly how it should be.
Why fit in if you were born to stand out?