The day you learn that your child has special needs can be a difficult one. Your mind immediately begins painting scenarios of things that you assume will never be. From realistic worries like school graduations to ridiculous ones like “I guess he can’t be an astronaut now”, you focus on the percieved impossibilities rather than the alternatives.
I spent a lot of those early months wishing for something I didn’t have. Still new to the diagnosis, I had no idea what to expect or what the future could have in store. The uncertainty of it all fed into hope and despair all at once. Every morning, I’d wake up wishing that the previous weeks had been a dream and he’d suddenly start speaking to me. It leaves you in a bit of a haze.
My son’s clapping or shouting can be shocking to someone unfamiliar with his special needs. Because of this, people would come to our home and, for the most part, he’d be invisible. Aside from an occasional “hello” or remark about how cute he was, guests had little reason to interact with him. It’s not that we hid him or didn’t allow him to be a part of the group. It was the exact opposite actually. We always included him in our group. He didn’t always include us in his.
Another major issue that new parents face is that others expect them to have answers for questions that they’re still searching for yourself.
When did they say he’ll start talking?
Does he know it’s his birthday?
Oh, he doesn’t like high fives?
You never realize how often people want a high five until you have a kid who won’t give them one. He dissed you. Deal with it.
Sadly, these confused guests or ignored social gatherings magnify the issue for newly confused caregivers, leaving us with a true sense of hopelessness. We were aware of all of his struggles and limitations. We were living them every day and learning what they were with each passing moment. Combine that with persistent questions about his lack of progress and the entire thing can be downright depressing.
So, you wish. You wish things were different or that he’ll wake up one morning and all of these seemingly insurmountable challenges will go away. You dream about it. Your brain swirls with insane pictures of you kid graduating high school in an astronaut suit. Your life becomes a series of “if-onlys”.
If you’re a new parent dealing with this hopeless hope, don’t feel bad. We all go through it….for a while. But, I can tell you something now, as the father of a non-verbal six year old, that I never thought would be real.
I wouldn’t change him at all if I could.
That’s not to say that if he started talking or dancing or doing vaudeville comedy, I wouldn’t be happy. I would be. But only if it was a natural progression of his own personality. I no longer wish he my son was anyone other than the person I know him to be. All of his quirks – good and bad – are his and I love him.
Having Autism or any special needs doesn’t mean the absence of personality or humor. When your child is still a baby or toddler, it’s hard to see that. Babies don’t have much personality or tell many jokes. All they do is walk and talk. If your child isn’t doing that at the level the other Mommy-and-Me babies are, you create a false image that, as they grow, they won’t be doing anything.
Oh, but they can and they will. Just like his amazing sister, Lucas has TV shows and songs that he loves. There are toys he will drop anything to play with and iPad apps that he can navigate through like a pro. There’s a huge personality in there and it shines more each and every day. He also demonstrates a level of humor that reminds me of, well, me.
There are countless examples, but one of my favorites happened right after we brought home our new couch. It was just him and me sitting on opposite ends. Suddenly he stood up on it and I, as the dad, got all dad-like.
Lucas! No standing on the couch. Sit down.
He sat…and smirked at me. Within seconds, he was standing again.
Lucus! I said to sit.
He again sat back down. Of course, it caused me to question whether he understood the rules. I began to wonder if I had overestimated his comprehension and anticipated a couch covered in little footprints forever.
As I was lamenting my imagined couch issues, I didn’t see that he had already started to stand up again. However, he wasn’t doing it due to lack of understanding. In fact, he wasn’t just standing at all.
Nope. Almost sloth-like, Lucas had begun to inch his way to his feet. His eyes fixated on me with a mischievous look, he began a slow motion stand as if simulating the evolution of man. With each passing centimeter, his grin grew bigger as if to say, “Ha ha. Screw you.” By the time he had fully stood up again, he was in hysterics.
Through laughter, I exclaimed.
He collapsed back down with a chorus of giggles. I scooped him up, tickled him, and he hasn’t stood on the couch since.
I don’t wish things were different anymore. Sure, they’re challenging at times, but my son is the perfect son for me. Just like his sister is the perfect daughter. He shares my humor and many of my quirks. While I strive each day to help him improve in areas he might be behind in, I can honestly tell you that if I woke up one morning and found out all of this was just a dream, I would be devastated.
I know that the world will try to put labels on him. It makes it easier for them. There’s only one label that I have for him, though. He’s my boy. Along with his sister, he’s one of the two greatest things I’ve ever done and I love him – not for what he does or doesn’t do. I love him for who he is.