We are approaching nine months of self quarantine. My husband is the one who is medically fragile in our home so we pull together as a family and we all stay home. From school. From the store. From the world. Not from work, we are both stay at home special needs and typical parents. Suffice to say that we live at work, 24/7.
It is tough. But we can do hard things. And so, we do.
My son, Kai, is eight years old and has nine different diagnoses both medical and educational. He also has a smile that lights up a room, is an up-and-coming verbal communicator and has a funny sense of humor. In a pre-Covid world, he attended an all special needs campus. In the current quarantine world, he learns at home. This is mostly accomplished using a tablet with occasional virtual visits from his speech therapist. His verbal skills are blossoming, something that took hundreds of hours of therapy and was always possible, but certainly not guaranteed. We are very excited about this achievement.
At home, we limit the space that Kai spends time in. It is impossible to be always aware of what he is getting in to and so we have crafted our space so that our brains don’t have to be ever vigilant (but, of course, they are). Kai has the run of our bedroom during the day, letting himself in and out of it as he wishes. It is his room, too. And his typical ten year-old sister’s. That’s right, we all cosleep in the same room but everyone has their own bed. Yes, I am aware that you probably think I am nuts. It’s not for everyone. But it works for us.
Anyway, it is a given that Kai will rearrange the room to his liking and every evening, before bed, I put the room back together. If you think that this is crazy, I challenge you to put the room back together EVERY time it is rearranged. You will quickly learn that this is all you will do, all day long. It is like having a toddler in a bigger body. We baby proofed and let him have at it. So that we can have a bit of down time. If you are a special needs parent, I trust that you can totally relate to this. If you are not a special needs parent, you may be saying that I should train him not to do these things. With all of our challenges, we need to pick our battles. And honey, this ain’t one of them.
Last night, I walked into the room and beheld the sight that Kai had created. It looked like a linen store and Santa’s Toy Shop exploded. All three beds were stripped. Pillows, blankets, sheets, stuffed animals, electronic toys, the click-light stars and moon, socks and more were all mixed together. Some of the objects had traveled from one side of the room to the other. Chaos reigned.
But my eyes immediately went to the window. I didn’t even register anything else. And I smiled.
Kai had left the curtains up. He loves to rearrange his environment. He will pull the curtains down and then lay across my nightstand, with his head on my pillow and sun himself in the window while watching his tablet, like a cat. Every evening, when I come in to fix the room before bed, I have to put them back up. It is a simple task, but somehow, I hate doing it.
On this night, I didn’t have to do it. Surrounded by all of the destruction I breathed out a relaxed, deep breath, and feeling like I had received a wonderful Christmas present, I began to put the room back together.
What does this special needs Mom want for Christmas? The list includes living forever to be able to take care of my son, not having to fight with people to get him what he needs, being able to sleep until my body wakes up naturally (with the years of sleep deficit, it could take a LONG time), more and heavier weights so that I can continue to get stronger to not get hurt as I care for him, better access to resources for our family and the list goes on and on.
But it never would have occurred to me to add the curtains to the list. Maybe Kai knows what I need most of all. Not having to put the curtains up and hugs and kisses from him feel like the best Christmas gifts of all.
OK, and I need chocolate. Anyone? Anyone?
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