I love putting Lucas to bed. It’s full of laughing and running around. I read from a select few books, which have been retold so many times that he’s come to anticipate the funny parts. As I lay him down on the pillow, I ask who Daddy loves. While’s unable to say it verbally, he taps his chest twice to signify “me”.
I then pull the blanket up to tuck him in and start to leave the room.
Almost immediately, he kicks the cover off and gets up to follow me out the door. I point back to the bed.
No, no. Go back. Sleepy.
Aside from the occasional rendition of Raffi’s “Brush Your Teeth” or a bath, that’s pretty much the highlights of the whole thing.
Of course, it wasn’t always like that. Early on, bedtime seemed pointless. I would try to sit him down to read and he’d be so busy looking around the room that I’d have to hold his head still or physically trap him on my lap. I’d struggle to tuck him in to bed while he’d be pushing back with all his might in an attempt to get back up. The second I left, he would stand at the door or run around his room until he tired himself out.
As time went on, though, that changed. This pointless bedtime ritual slowly seemed to click for him. Suddenly, he understood that calling out “bed” meant it was time to go upstairs. He even sits by my side and listens as I read his stories in my insanely animated way. If he does any ignoring of the books now, it’s usually purposeful.
I guess I’m saying this because I know how frustrating it can be to do so many routines and rituals with someone who you believe might not even understand any of it. The younger days of my son’s life were confusing. You don’t know what’s getting through and what isn’t. There’s a desire to do everything you possibly can but also a worry that none of it matters.
I can attest to that. Sure, people tell you that when your child is young. Experts will give you grim and clinical futures on one hand while telling you that you should carry on with business as usual with the other. You’re assured that “everything matters”. In many cases, you go through the motions of Music Together and Gymboree classes, watching all the other babies advance. Your mind is wrapped up in a million different knots and, throughout it all, you’re reading Little Golden Books to someone who might not even notice.
The scariest thing about being a newly diagnosed special needs parent is that you’re a newly diagnosed special needs parent. So much of the road to this moment has been grim. You haven’t had the chance to fully appreciate your child without the underlying anxiety that’s been simmering beneath the surface. So far, almost every positive moment in their lives has been clouded with shades of concern.
You also haven’t had time to see the things that make a difference. You haven’t watched them go from running around in circles during story time to turning the pages of the book for you. You’re still planting the seeds. The garden doesn’t grow for a while. When it does, it changes everything.
I remember those early days and the foggy vision that came with it. I was miserable with guilt and doubt. At his young age, my son had few victories. At every turn, we were weathering storms and taking hits. it seemed like things would never get better.
Things get better.
I can honestly say they get much better. Your child will have many victories. They might not be the victories you think they will be – both in a good way and a bad way – but they will be victories. It will be cause for celebration and pride. Those things will happen and those things take time.
They also take patience and understanding. If you don’t understand who your child is, you won’t understand what their victories will be. While I’m speaking about children who may be on the Autism spectrum, this advice holds true for all our kids. Know who they are and you’ll know when to be proud. The world has many award winning artists with fathers who are ashamed that they didn’t come work at the tire store.
The best part? The breakthrough moments can come from nowhere and never stop. Just a few weeks ago, our bedtimes took another turn.
After putting on his pajamas and reading a story, I walked Lucas to his bed. He put his head on the pillow and I began to stand back up to leave. When I did, he put his hand on my arm to stop me.
Then, with both fists, he grasped his blanket and, while looking up at me, motioned it up and down as if to gesture that he wanted to be tucked in. Amazed, I pushed the blanket all around him as tightly as I could and gave him a kiss goodnight. When I walked out of the room, he didn’t follow me out. Instead, he stayed in bed and fell asleep.
It’s fine to have self-doubt about whether what we are doing, as parents, is effective. It’s OK to think that we might have no real consequence on the lives of our children. It’s understandable to wonder if any of it matters.
But after your done worrying, thinking, and wondering about all of that, pick yourself up and get back at it. Because it is effective, we have a real consequence, and all of it matters. That’s the truth. You might not have seen it yet, but you will. When that day comes, you’ll be happy you put the time in when you did.
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