Blog #111~ Constant Child
Last Saturday morning, Nick watched the same DVD over and over. It was a continuous loop of Thomas the Tank Engine’s, “A Big Day for Thomas”.
Twenty years later I didn’t see myself listening to the dialog, and able to recite every line. At this rate, there will be no break between Nick watching Thomas and my grandchildren following suit. I can see it now, Hank Jr. saying, Hey Uncle Nick want to watch Thomas the Tank Engine with me?” I also didn’t imagine stumbling over plush toys that my son dropped from the second floor.
I didn’t picture myself scrubbing red marker stains off his clothes at age twenty.
Note to school staff: Markers + Nick = Skin, and Clothes…….
This got me thinking, having Nick is like caring for a constant child. Nick is twenty years old and he has Down syndrome and autism. He can’t stay at home by himself and requires continuous supervision. Don’t get me wrong, he has made strides doing much more independently (like unloading the dishwasher, putting away groceries, recycling, vacuuming, etc.). And he does watch age-appropriate movies and listens to grown-up music on his iPod.
But at the end of the day, I’m still wiping snot off the flat screen TV and microwave. Out in public, he can never be more than arm’s length for fear he may take off running, or to pull a fire alarm.
30 Fire Alarm pulls since 3rd grade. Is there a bumper sticker for that?
I’m not writing this to get sympathy. I’m simply putting a lens on what the world looks like having a young adult with Down syndrome and autism. It’s not the end of the world. But it is a very different world, then I expected. The stimming, banging, tapping, yelling, dumping, phone intercom and microwave button pushing is constant and mind-numbing at times. And you never know what he’s going to drop off the top of the staircase. All I can do is continue working with him to foster independence. I’ll keep redirecting his inappropriate attention seeking behaviors and have him clean up his messes.
I’ll take Stuart Little and Dora the Explorer over shaving cream any day……
I will remind myself that the laughter, silliness, sweet kisses and unconditional love of this constant child helps to offset the rest.
That’s what is in my noggin this week. Now back to operation red marker removal. 🙂
~Teresa
Down Syndrome with a Slice of Autism 
Don’t they all look like angels when they are sleeping? Good luck with the marker and Happy Holidays to you & your family. May God continue to bless you.
The picture of Nick sleeping just melts my heart! He is such a beautiful young man. It is good to always find the balance of pros along with cons of raising our children. Thank you for your blog, I love your stories!
I love your honesty, and I so get it. I’m laughing and crying right there with you.
Your comment about the bumper sticker made me laugh… keep writing so we both keep laughing!
Happy Holidays Teresa! I hope Santa brings Nick quiet I breakable toys that can be tossed down the stairs:)
Thanks for sharing your thoughts. It helps others to know they are not alone. I deal with some similar issues but not to your extent and I sometimes forget all the unconditional love our children bring us. Keep up the blogging. 😉
Teresa,
This is the BEST! I LOVE this post!!!! You are teaching me so very much in these words. I will have to re-read it a hundred times to glimpse the many lessons in your words.
I love you, Mary Ruth
You really need that bumper sticker!
Love this, Teresa. So helpful to see the perspective of someone a bit farther down the road from us. Thanks for writing!
Don’t rush down that road, you’ve got a way to go. That was the worst case scenario. I suggest you dive into the archives to the “Fun side of Nick” category. It’s not all so bad, and in fact quite humorous. 😉