Being a parent of an individual with disabilities, modifications are a way of life for our family. We’re always mindful of our son’s disability (and both our boys’ allergies) before we plan anything. We do this without even thinking.
Everyone in our family knows there are activities we can’t do and restaurants we can’t eat at. This is how our family does life. It’s our normal and we are good with it.
But as the kids have gotten older, we’re faced with a new dilemma. We have one child who’s stuck in time forever as a five-year-old while his siblings have grown up. Maybe his interests would’ve progressed if his fine and gross motor skills were better, but who knows. All I know is, it’s affecting family time.
Family time
In our family, family time means spending time together. We take a break from all our routines, enjoy each other’s company and do an activity together. When the kids were little, this was as easy as rounding everyone up and playing Candy Land. Or everyone cuddling up on the sofa, eating snacks and watching a movie.
Nowadays, we spend a lot of time figuring out what activities to do. It’s difficult because two of the kids have interests that are vastly different than their brother’s. On opposite ends of the spectrum in fact. Making it very hard to find an activity everyone enjoys. More often than not, my son will like the activity while his siblings tolerate it or vice a versa. It’s very difficult to find something they ALL enjoy.
Granted, there are some activities we’ve successfully modified such as board games. We were able to adapt some to my son’s level so he can play with us. If we can’t modify it, we assign him a job, like being the designated dice thrower (which he loves doing). This way, he still participates even though he can’t actually play the game.
Unfortunately, we’ve discovered there are some activities we can’t modify, like movies. My son likes G and PG-rated movies. He can’t watch anything with a higher rating because it stresses him out. Which in turn causes him to loudly vocalize his agitation (this is how he relieves stress). This stresses everyone else out.
We really tried to make movie time work because everyone likes watching movies. Naturally, we tried modifying movies for my son. We thought maybe a smaller screen would help. So we watched it at home and it was a tiny bit better. Then we thought of turning the volume down during intense action scenes, again this helped a little but not much. None of our modifications were 100% effective. To be clear, my son liked the concept of these movies (he loves superhero’s) and wanted to watch them. He just couldn’t. Even with all the modifications.
On the other end of the spectrum, there aren’t many G or PG-rated movies which my other two like to watch, except maybe Pixar movies. As a whole, modifying movies didn’t work for our family, as much as I really, really wanted it to.
What am I learning?
I’m learning family time has to be adaptive, not modified. Some activities can’t be modified and it’s no good pursuing them. Because, in the end, it stresses everyone out. As much as I like to do family time together, sometimes we need to find other solutions. This may mean splitting the family up. Half will do an activity together while my son and someone else stays at home. It’s not ideal but it is the best solution for everyone.
These are the realities of living with a uniquely abled individual. I don’t regret it but I do wish there was a better solution.
I would love to hear what activities you all still love doing together as a family. What activities did you have to modify and what (if any) needed to be adaptive?