One day, a waitress in a café to whom I had explained that my son had an autism spectrum disorder, asked me if my child was a "mongol." Stunned into silence, I didn't know what to say. I wondered where to start, and especially if it was worth the trouble. Ignorant comments, stupid questions, and false affirmations are part of my daily life, and certainly the lives of many parents of children with special needs.
Hearing people tell me that they know an "person with autism that was cured," and endless success stories of adults with autism who became geniuses sadden me less than meeting parents who are distraught and ashamed of what is happening to them.
"It is what it is," said the mother of a child with autism with a resigned air during a parent meeting I attended last October. To that, she added that she hadn't told her family that her son had recently received an ASD (Autism Spectrum Disorder) diagnosis. She explained that since their relatives lived far away, she was hoping that everything would be sorted out by their next visit and that no one would notice anything was different. A few other parents wept silently while she told her story.
The problem is that an ASD is a permanent neurological disorder; it doesn't go away, but rather confirms itself over time. The language delay that we sensed becomes a language disorder, the little nutritional problem transforms into selective eating of certain foods, the lack of socialization turns into a lack of friends. Even if you try to deny it, or pray and hope that things were different, you have to adapt to reality. You have to accept to navigate through troubled waters and not know what's going to happen later. It is a long road with ups and downs and surprising stages.
"It's going to be alright," the banking consultant, a woman I had never seen in my life, told me kindly after I told her about our situation!
During a birthday dinner I met a sympathetic lady who told me very candidly; "I too have a disabled(!) child, an 11-year-old girl. It took me seven years to accept that that's how she was. Now she's on a Paralympic ski team and we are all very happy, but it took all those years for us to get here." Up until that point, I hadn't considered that I also had a "disabled" child by society's standards. After a lot of reflection, I concluded that this woman and I were probably living similar situations, one step at a time. Another mother I often see at the Gold Centre that my son attends in the morning summed it up well by saying that what we go through is "bittersweet" as we worry endlessly, but also rejoice in every bit of progress our children make.
As parents of children with special needs, we each have to find our path. Over time, we all find our way. For me this was, and continues to be, a lesson in acceptance and redefining my values. It begins by not lying to myself, or to others. How many times have I told parents I didn't know that my son had a language delay? This reassured them and made me feel less guilty than not saying anything when they stared at us in the park or at daycare. But people around us often have difficulty understanding what we are going through, as our child isn't sick or dying!
"How old is he?" I am often asked, as a roundabout way for others to measure the difference. However, while he may not speak much for his age, he can count in multiple languages and constantly astounds us with his incredible memory and passion for classical music, which he hums incessantly. He knows sign language although nobody taught it to him! He is the one teaching us the alphabet in Spanish, Hebrew, and even Japanese. Clearly his brain doesn't work like ours, and his intelligence astounds us. I only hope that he finds his place in life, and I am ready to do whatever it takes to open as many doors for him as possible.
Accepting that he will never be like me is an option that I hadn't considered because I was blinded by my need for normalcy; the need to be part of the community, to belong to a group, to share insight and be able to compare myself for reassurance. But, with a child with autism, all comparison is illusory. Our child can only be compared to who he was a year ago, and this allows us to observe the progress he has made. Like Antoine de Saint Exupéry said in The Little Prince, we are more concerned with what is essential and invisible to the eye. We put our faith in a few quality connections and in the good moments.
If I am sure of only one thing, it is that we, as parents of children with special needs, play a role in educating others. Instead of hiding, being embarrassed, we need to explain what is affecting our children to others. If we don't do it, who will? As time passes, I feel more comfortable with the new role I've been assigned to: whether it be with the CPE, my friends, family members, or even strangers we pass on the street. This doesn't shield me from being faced with sidelong glances from parents who don't know us. When it comes to them, I always feel the same anger that grabs me by the throat and causes my cheeks to heat up. I feel like they are judging me and think I'm a bad parent who failed to educate her child, when he is having a meltdown and I'm having difficulty containing it.
But then I remember being in their shoes, faced with a parent who, by all appearances, was letting their child get away with everything. "Another spoiled child!" I'd say to myself.
The truth is we never know what others are going through, or why they are acting the way they are.
For this awareness I can thank my son as it is he who showed me patience and tolerance, and especially because he proved that I am capable of unconditional love. So whenever I can, I take a few minutes to explain to the people around me that my son has an ASD. And when I see their reaction, whether it is one of not understanding, of fear, concern, empathy, or sorrow, I can say that my job is done.
You can find this post on the Miriam Foundation Website.
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