Raising a boy with autism these past years has been a challenging and daunting task. Initial expectations have been replaced by new ones. Skills that parents of "typical" children take for granted are met with over ecstatic zeal. Some fears that I had after the diagnosis have subsided, while new ones arise and I find myself with new trials to face and new triumphs to celebrate.
To parents like me these statements are just me beating the proverbial autistic dead horse. I just hope I can provide some insight and help you see what I see.
A picture is worth a thousand words is an adage that holds true, especially when it comes to photos of The Boy.
If you didn't know anything about The Boy you would think I coached him to pose for this shot and asked him to pretend he is running from the Evil Emperor Zorg while dodging his ping pong ball gun. When I look at this picture, I like to pretend this is the case. And that we are enjoying a fun family moment. The reality is that The Boy is stimming (hand flapping) because he's overstimulated and is in fact at a loss for control. This is one of my sons. This is the son that brings on the stares. The kind that say, "what is wrong with that kid?" The only thing wrong is a lack of understanding of his condition.
I have many shots of The Boy stimming. They used to sadden me but no longer. They remind me of that famous Neil Leifer photo of Ali standing over Liston seemingly beating his chest. The fact is that he just tapped his chest for a split second and that moment was frozen in time. That is how I learned to deal with these photos. As just moments in time that do not tell the entire story.
Below, we see The Boy in another solitary moment. Looking off, contemplating, his little mind processing all to see in Downtown Disney. Accompanied by Pooh, Piglet and Tigger, he seems disengaged and detached. This is probably the biggest stereotype regarding children on the spectrum. That they live their everyday in some type of inner solitary confinement. There was an instance when a childcare provider told The Old Lady that she thought The Boy would just sit in a corner while at her center. Now this was a woman who has run an after school/day care program for over thirty years. So if she can be ill informed, imagine people who have little interaction with children. There are times when The Boy becomes detached and super focused but it's really when he is reading or trying to figure out some game. This is the son that can't be bothered.
I don't see his detachment as something negative. I see it as The Boy's problem solving and introspection time. We all become detached at times, and with children on the spectrum it seems to me an area that gets a great deal of attention. Maybe because it's common character trait that everyone shares, and the condition exacerbates this. Sometimes I can be a little overbearing in my attempts to "snap him out of it." And more often than not, The Boy will push me away or respond almost like he is telling me "I got this" or "You sir, are annoying me." And it's still okay because we all need our time.
The Boy now on the Speeder bike looks like he is racing through the forests of Endor. Looking like he is engaged in the shot, participating in make believe. Just having fun the way any other 5 year old should. This is the son like any other. The interests he finds to be fun and entertaining make him smile. He generally cracks up at any kind of slapstick mayhem. He cracks up when contestants try to cross the big balls on Wipe Out. Sometimes he pretends to surf space when watching the Silver Surfer cartoon. He takes on the role of Little Critter and recites line from one his favorite book "Just me and my Dad"
All three of my sons have traits that appear from time to time. I embrace every solitary moment captured. I know the story behind every photograph. And I am happy and proud to share them. I love my three sons equally. They all need different attention at different times. But I make equal time for each of them because my three sons make up My Boy."There comes a time when the jewels cease to sparkle. When the gold loses its luster. When the throne room becomes a prison. And all that is left is a father's love for his child." Conan the Barbarian
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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.