Many things have happened in my life that I would have never imagined. From surgeries to loss, I have experienced surprises across a wide spectrum. Having a non-verbal son with a pronounced form of autism can be added to that list.
Today, saying that I have a special needs child is something I can verbalize easily. Knowing that Lucas is in my life and, for eleven years, he has been one of the brightest parts of it fills me with happiness. That, however, is now.
Back then, when I was first preparing to welcome a son into the world, I probably would have lost my mind over the prospect of this. Before I was aware of the boy who’s here now, I was afraid of who that boy would be. Today, I know he’s my son and he’s perfect. Back then, it was all a mystery. What is raising a special needs child like?
I was afraid and confused. There were no concrete answers. I had no idea what raising a child with a “severe disability” would entail. No one who hasn’t experienced it does. My worries were based on the very little information that I had gleaned in life.
Out at a supermarket or store, I’d occasionally hear a child with special needs melting down, shouting out, or causing difficulties for the exhausted parents. I would go out of my way not to look and go about my business. The whole scene sounded so difficult from the corner of my eye, and, at that moment, I would arrogantly remind myself of how “lucky” I was.
The irony? I am ten times luckier to have my son in my life than I ever was without him.
What I didn’t realize then was that the meltdowns I was witnessing were only a part of a person’s overall day. I noticed them because they were loud and called for attention. That’s what meltdowns do. Because of that, my only real third-party view of special needs parenting was from across the produce aisle during a random child’s most difficult moment.
The other 23 hours and 57 minutes of the day, I wasn’t privy to. Well, actually, I was. We all are. We go through life and enter many places where special needs children could be. Is there just endless screaming everywhere? No. That’s because there are not constant issues of overstimulation, agitation, or a melting down. The calm and familiar moments are invisible to the outside world, but they greatly outnumber the loud ones that command our attention.
Overall, we only notice other people, not just kids like my son, when they are causing a commotion. When that happens, it shapes a warped view of who that person and the people you are grouping them with are.
No one looks over at Lucas if we’re sitting quietly at a restaurant. They don’t stare if we’re just walking hand in hand or he’s showing me his iPad. There are no side-eyes if he kisses my cheek or gives one of us a hug. People don’t see him unless he does something jarring. For those tuning the world out until that moment, it could be seen as his main personality trait. It’s not.
I wish I had known that back when my son was first being brought to specialists who would offer vague “anything can happen” advice. I didn’t know anything about children like him besides the sporadic outbursts from others that I would notice.
Watching a child with autism having a meltdown can be upsetting to strangers, not just because of the chaotic scene. It’s because of the perceived lack of understanding. They watch this disconnection between the child and their parent, and it causes a visceral reaction. How frustrating must that be?
Truth? Very. In the beginning, we both struggled. There were times when he wanted something and couldn’t express it. There were times I would try to get him to follow a direction and he couldn’t. It was an issue for both of us. We knew early on that we needed to figure it out.
Communication devices and hand signals quickly came into play. There were pictures to point to and handholding at the refrigerator door. We knew what we had to do and we did it. In many ways, we have been incredibly successful. In others, we have a slew of work still before us.
The meltdown moment a stranger might see is one that is difficult for me and my child. However, just because they don’t understand why my child is upset, that doesn’t mean I don’t understand why my child is upset. I do.
Well, that’s a lie. Sometimes I do. Sometimes I don’t. Either way, I handle it the same way. Unless he’s facedown and blocking a walkway (happens a lot), I will sit down beside him. I’ll try to hug him and rub his head. I’ll whisper in his ear “Shhhh”, but then “you’re killing me, dude.”
Most times, it works. Others, I am forced to take his hands, throw my bodyweight back, and slingshot him up like I’m Ricky “The Dragon” Steamboat. Either way, we got this. He’s my son. I know him.
And that’s the biggest difference of all. The stranger’s kid melting down in the produce? Never met him. The kid I imagined my son becoming when he was diagnosed as a baby? Never met him either. There’s only one Lucas I know. Raising a special needs child can be tough but can also be pretty fantastic. I would have never known. As I mentioned earlier, though, no one who hasn’t experienced it does.