When you have a baby, the first thing you do is start to prepare yourself for all the firsts. From the second that little person arrives, you have him or her on their belly and you wait for the head to go in the air.
It’s called tummy time and the sounds my daughter would make were like audible sunshine. Valiant shouts of energy accompanied every teeny pushup until her noggin was airborne and we all would cheer. It was the first of many moments like it.
Walking, talking, feeding themselves, and other milestones were the top priorities. People asked about it. We took videos of it. We bragged about it. Our baby was doing all the important things. How wonderful.
So, what happens when those moments don’t occur? What happens when, like my son who was born a few years later, your baby isn’t raising his head when he should or sitting unaided by the “right” age? What changes?
People still ask about it. You still make the effort to do it. There’s still encouragement and baby books with earmarked pages reminding you of upcoming expectations. You have tons of video footage. All of those things remain constant. The only thing that really changes is a parent’s reaction.
Internally, you freak out.
I did. My kid wasn’t doing all the stuff I knew he should be. What was happening? Experts didn’t know. Some said he was fine. Some said he would never do anything. All of them were sure to tell me it wasn’t my fault, even though I never asked. The one thing I knew for sure was that it was our responsibility to make sure he learns all the skills that would help him reach his goals.
Priority number one was teaching. My boy had to walk. My boy had to talk. My boy had to learn the building blocks of what it is to be a kid. In my mind, every moment of every day had to be spent showing him how to advance to the next level. Every moment that he wasn’t trying to reach a milestone felt like a wasted moment. It was like putting your feet up and drinking a Diet Sprite as your living room burned to the ground around you.
The educators were all on board with this. We loaded his days up with physical therapy, special education, occupational therapy, and speech. He went to a special preschool and came home to more in-home services. So much of Lucas’s day was spent with someone pushing him to be the best he could be.
Years later, I am proud of all he has learned. He can walk and handle a number of life skills I never thought possible during those days of worry. The person he is today is a testament to his hard work and the people we made sure to have in his life.
Still, though, he doesn’t have verbal language. He also lacks some pretty important life skills and his understanding, while amazing considering where we thought he would be at this point, could still pose a problem if he was on his own tomorrow.
Even though he goes to school for seven hours a day, he still gets home services after school. The people who come to see him are tremendous. They help him and they show him the right way to do things. He has fun, for the most part, but like any kid, he appeases us. He knows we want him to do these things so he does them. He’s cool like that. He always has been.
With so many more milestones left unreached by my ten-year-old, the idea would be that his work is never done. More hours. More lessons. More time spent at the breakfast nook sorting shapes and identifying pictures. These things are important. It should be all his time, right?
Don’t get me wrong. He needs these things. They are important, but this is his life. He’s a ten-year-old boy first and a ten-year-old boy with autism second. As the years ticked by, I started to feel guilty. Sure, there were times – even a few years ago- that these intense lessons were imperative. Issues at school and noticeable regression all played a role. Today, though, he’s on track and doing great. They aren’t as pressing as they once were.
I want Lucas to learn these skills so that he has a better quality of life. Yet, what about the quality of his life now? What about getting to come home and kick back with TV or an iPad for a while? What about going out with his friend or driving around to watch Christmas lights from the car? What about being a kid?
It makes me sad to realize that a commonsense approach that I would take with his neurotypical sister has to be an epiphany when it relates to him. I would never force my daughter to do constant lessons to make her a math expert or singing star. I would know better because at some point, she would say, “I don’t want to do this right now.”
But he can’t. He doesn’t have those words, even with his communication device. It’s up to me to spot it and make sure I give him the time to be a child. That’s not so easy to do.
Do these skills still feel like pressing issues that he needs to achieve? Sure. But it no longer feels like my living room is on fire. If anything, it feels like he deserves time to sit back and smell the roses now and then. There will always be things for him to learn. His whole life shouldn’t be spent in a furious rush to get to them. In some cases, he might never learn them, no matter how hard we try. I accept that. I accept him.
I will do everything I can to make sure he is always on the right path of education and will never stop trying to teach him. Quality of life, however, includes today. He’s a person and every person deserves happiness. Every person deserves a break. He’s more than earned it.
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