The Person I Admire Most In the World

For many parents of people with special needs, our number one fear in life is what will happen to our child when we die.  I’ve even heard some special needs parents say there are times they almost hope to outlive their child.  It seems incredibly backwards and wrong but I absolutely understand this mentality.  What will become of our vulnerable kids when they’re no longer young and we’re no longer around to protect them?  To many of us, it’s a mystery just as foreboding as death itself.  The natural coping mechanism is to take solace in the existence of our typically developing children like my daughter Alyssa.

Solace is fine but actual expectations are not.  Just because somebody like me or my wife Jen is the parent of a child with special needs doesn’t mean the world owes us anything. Our typically developing kids don’t, either. I had this epiphany roughly ten seconds into Alyssa’s life. After thanking God she was healthy, I then thanked God she was a girl. Why?  A girl, I generalized, was more likely to care for a sibling with autism like my older daughter Skylar than a boy would be. As I listened to my tiny newborn daughter cry, it suddenly struck me just how vile my previous thought was. Alyssa was a human being in her own right, not a pre-destined savior for somebody else. I made a promise to myself from thereon I would never put any pressure on her to be anything but the best person she could be.  And I’ve sincerely done my very best to keep this promise but have often felt as though I’ve failed her. Oddly enough, her general awesomeness towards her big sister and autism matters in general have been the source of my angst.

I think Alyssa’s outgoing, truthfully often loud nature makes her benevolence towards her sister and other kids with autism more effective because so many eyes are generally on her.

Two stories, in particular, stand out.  It’s because Alyssa not only displayed great compassion for people with autism but led the way for others to do so, as well.  The first was in pre-school a few years back. Alyssa, not yet four, was in a class with about a dozen other kids, including one who clearly had some issues setting him apart from everyone else.  My younger daughter, who developed radar for such things from the time she could put two words together, immediately recognized the source of these issues and expressed her concern to me. “Poor lil’ ossism boy, Daddy.  He doesn’t wanna play with anyone and nobody wants to play with him but I pat his head and say ‘it’s okay, lil’ ossism boy.’  I tell my friends they should play with him, too.”

I was blown away for a number of reasons, not all positive, but decided to assist her in her quest to befriend this child and set an example for others to do so. It wasn’t too difficult because I had the real world example of Skylar to draw from. “I don’t think it’s that he doesn’t want to play with anyone,” I replied. “I think he’s not yet comfortable playing with people he doesn’t know. Maybe you could just give him a moment of your time every day and play near him?  Maybe he’ll come to you when he’s ready if you do this enough? Maybe your friends will see this and try to do the same thing? It would probably work better than you telling them they should do it.  Also, try not to call him ‘lil ossism boy’.  He probably feels different enough already.”

“Okay, Daddy,” my younger daughter shot back.  About a week later, I arrived at her school a bit early for pickup and saw that not just Alyssa but several other kids from the class were playing near the kid she had been concerned about.   It wasn’t a stretch to assume my little girl had something to do with this welcome development. My overwhelming pride, however, was mixed with sadness.  Alyssa should just be a pre-school student, dammit, not a play therapist.  Why did I advise her like I had?  Had I put pressure on her?  I may have broken my promise to myself.

Skylar and Alyssa just hanging out

My second story is from last spring. About nine months ago, Alyssa (who attends a different public school from her big sister to better insure having her own existence) was playing with some classmates at a playground when Skylar and I arrived to pick her up.  My younger daughter, who loves to work a crowd for laughs, decided it would be funny to whisper bathroom terms into Skylar’s ear along with the command she repeat the words for her friends.  Skylar did as requested, causing everyone present to laugh hysterically.  I wasn’t happy but decided not to embarrass Alyssa on the spot.  After all, she was generally a great sister and, as a kid, had the right to screw up every now and then.  I did talk to her later, though.

“Alyssa, you know it wasn’t right to script Skylar to say those things, don’t you? She trusts you more than anyone in the world and you took advantage of that.”

Alyssa’s lip began to quiver. “I was just joking, Dad. We were just laughing at the jokes.  Skylar was laughing, too.”

“You were all laughing at her—not with her—and you made her the joke, Alyssa.  Please don’t do it again.”

Alyssa began to cry and I felt awful. I didn’t feel that I was wrong in what I’d said, mind you, but that was small comfort in the moment.  She didn’t deserve to be lectured so heavily, especially since I would have done the same thing when I was six years old. Had I again broken my promise to myself?

Early this fall, Skylar and I returned to the playground.  Once again, there was a crowd of kids. “Alyssa, tell her to say ‘poop’,” one of them bellowed, causing the other kids to laugh.

Alyssa wasn’t among them, though. “That’s making fun of her,” she snapped, getting in the offending party’s face.  “Don’t do it again!”  A few seconds later, nobody else was laughing, either.  Yet again, I was both incredibly proud and mortified.  It was wonderful for Alyssa to stick up for her sister but what had I done in making her feel she had to do so?

It’s best not to mess with Skylar when her little sister is around

A few weeks later, over thirty little girls came to our house for Alyssa’s birthday party, including the one who’d requested Skylar say “poop.”  They played like maniacs, stopping only to work on craft projects like the bags many of them were designing to take home. Skylar, as she’s apt to do, misplaced her bag and began to throw a fit.   The kids present who knew Skylar weren’t too fazed and knew to ignore her. The ones who didn’t know her, however, were understandably thrown off to see such rage over something so minor and wide-eyed whispering ensued. This was the exact reason I try to keep some separation between Skylar and Alyssa’s lives.  Why should Alyssa have to feel embarrassed?

My wallowing was interrupted by the child who requested Skylar say ‘poop’ emerging with the missing bag. “Here you go, Skylar,” she said. “I looked all around and found it.  It’s okay.” I rubbed my eyes in disbelief.  Not only had this particular young lady learned from her mistake to empathize with Skylar, my Alyssa had been the teacher!

Alyssa has shown a knack in her brief life to not only lead Skylar but others, as well, when it comes to matters of autism

When I praised my younger daughter the next day for being such a great role model, she had a response that warmed my heart/troubled me deeply. “Of course, Dad. Skylar’s my best friend and always will be.”

“Don’t say that,” I moaned.  “I mean, that’s great for her, Alyssa, but she can’t give back like you deserve. Be a good sister but you don’t have to be her best friend.”

She glared at me. “Are you saying she can’t be my best friend? That’s not up to you, Dad.”

It was time for another epiphany.  Sure, I had no right to tell her she had to feel responsible for Skylar in any way or devote part of her life to her big sister but I also had no right to tell her she couldn’t. Maybe being Skylar’s best friend/savior was just who Alyssa was and, more importantly, wanted to be.  I realized I’d better back down real fast. “You’re right, Alyssa.  You can be whoever you want.”

Note: I’m now on Facebook. Please visit and like my page at www.facebook.com/diamondisthesky

Alyssa launched “Little Lissy Loom” for a period last fall to make and sell loom bracelets then give the money to charities important to her. It has sometimes bothered me why a kid so little would feel compelled to be so giving rather than just a little kid but I’ve come to accept that’s who Alyssa is.