My son at 20, autism, and being “normal”

Bear with me because I know moms always say this, but I can’t believe my little boy is 20. In picture 1 you will see my smiling, clear-eyed, normally developing and verbal 11 and a half month old. Picture 2, taken shortly after 1 year immunizations, shows my son Karl beginning to drift off in his own world. Unable to tolerate and disturbed by the light of a camera flash, a happy shot of him became difficult to get. His skin became irritated; cheeks constantly red and rough with eczema. His diapers beared witness to the hell that was going on inside of his gut with the onset of his autism;  mucus-filled diarrhea bowel movements became the norm for him. I think it’s a pretty safe bet that he hurt all over. It’s not a wonder all verbal communication from him ceased and he did everything he could to attempt to escape into his own world. But then we come to picture 3, with my bright-eyed boy once again. This is a picture of a boy that put in 40 hours a week of ABA therapy with caring and tenacious therapists, took vitamins and supplements with a resigned, compliant attitude, assumed a gluten and casein-free (no wheat or milk proteins) diet with good temperament and calmly endured a port being inserted in his chest when infection had sent him to the hospital for 5 days and this was the only way they would send him home, enabling us to continue his I.V. meds at home.  He sat bravely while having injections done or blood taken or his belly poked at, wires attached all over his head, his spine and other areas manipulated, his behavior monitored and dissected, all for the small promise of a large order of McDonald fries when he was finished.  That’s it. That’s all he wanted back. McDonald’s french fries.  And this, we could do. 

But naturally, what the rest of us wanted was a much taller order than french fries and much harder to obtain. We wanted him back. We wanted him “normal”.  Normal is such a ridiculous word when you think about it. What is normal anyway?  What exactly were we looking for?  I’ve had the past 18 years to ponder that and I can sincerely tell you that I was barking up the wrong tree. There is no normal, or at least, no “one size fits all and THIS ONE WAY is the way everybody should be” normal. Being a person who rarely thinks in a conventional manner myself, I should have been the first to note that being like everybody else should never be a goal of any body’s. But what did we know? We just didn’t want him hurt. Period. So at the time, normalcy seemed our surest bet.

So, are we there yet? Is Karl “normal”? Did he ever become “indistinguishable from his peers” as we actually once recorded as a goal during his yearly IEP meeting at the beginning of this autism journey? Well, I can proudly tell you that Karl graduated from high school 4th in his class in 2016 and is now in his second year at Community College. He’s a healthy avid runner, gets a kick out of Sponge Bob Square Pants and has a love of scratch-off lottery tickets and as he puts it, “games of chance”. He has a delightful sense of humor and goes about most of his days in a state of contentedness. So, normal?

I guess you could say that somewhere on my way to trying to get him “normal”, normalcy stopped being the goal as he succeeded in waking me up and enlightening me to the fact that perhaps I was looking for a son to fulfill in me something that I could only fill for myself. Perhaps the issues that trouble me as a mother, such as his lack of friends and social circle and his overall alone-ness are not his issues and often the things I desire he have in his life are not desires shared by him. But I’m gradually learning that if I can let go of thoughts of what I once believed should have been, or what might have been or what MY plans had been and focus on what IS, my eyes are opened to the brilliance that is and always has been right in front of me, who will blessedly always be distinguishable as the light that shines on our family. Happy Birthday Karl. You are a gift.