Sometimes on this blog I have used my October posts to delve into some of the darker aspects of what a family of a loved one with significant disability-related challenges can experience. And, I thought about it this year too. I was thinking something about playing on the words of an older LeAnn Rimes song, “Can’t Fight The…” except, just a slight word change where I replaced “moonlight” with “trauma.” I was relishing the discordant feel of the music with the modified title and lyrics and how I could fit a description or two of memories or experiences that would really twist that point home how deep the emotional impact from some of these experiences can be for the family or primary caregiver.

And then I just couldn’t. Though it may be apt, it may be real, and I may live it like I feel it sometimes, my preference is to focus on something more proactive right now because it just emotionally feels less traumatizing to my right now. So, I would like to share a brief moment that broke yet another piece of my heart off and then flesh out my therapy strategies to glue it back in place and keep it there in the future.

Perhaps it has been clear from what I have written about, but I have focused a significant amount of my therapy efforts in the past couple of years on school readiness goals. Because of the pandemic, I needed to devote a significant portion of the programming for tolerance of medical materials to N95 masks. Yes, I worked on some other medical stuff and we’ve managed to get our little man to the point where he can tolerate most portions of a primary care medical exam, there wasn’t time for me to work on everything so I focused the least on dental tools.

When our son went in for his general anesthesia dental procedure earlier this month, 4 people had to hold him down for the gas mask portion while he was put to sleep. And it was just like shards of glass to my emotions to see how scared he was, to know that was necessary.

So, I decided we were going to do something about it as his therapy hours no longer need to be focused as intensely on school readiness. I ordered two types of facial masks for distributing gases. I ordered some dental xray clips. Because I don’t have enough money for actual sensors, I decided I was going to use Laffy Taffy on the clips because they are roughly the same size and already covered in a plastic casing that might approximate the sensation of a sensor cover.

For the masks, a couple of weeks ago I started out with him sitting in a chair and just touching the mask to his face and then I would pull it right back off. Then I advanced to a few seconds when he was tolerating that well. Then I asked him to lay down in a specific area before applying the mask. Once he was tolerating it for about 15 seconds, I started rubbing lavender oil in the top portion of the mask to acclimate him to the presence of smells with these masks. For the x-ray clips, because those just arrived recently, we’re at just tolerating a couple seconds in his mouth. I’ll need to work on him not moving his head with those. And I’ve increased the frequency we do dental tool work and have added a bright light above him component. And, when we go in for his next 6 month visual check up, I am going to bring my masks from home so that we can practice in the dental exam chair because I am certainly not going to expect them to dirty their own, since it will certainly be beneficial to have him practice in the dentist’s office itself.

This is often an invisible cost of trying to help an individual with profound sensory differences adjust to common medical or dental procedures, the supplies needed to practice and increase tolerance with. Insurance doesn’t pay for it. The company who makes sure I’m compliant with DDD regulations in my habilitation therapy doesn’t pay for it. So if I want to help my son (and therefore me) be less traumatized by future dental experiences involving anesthesia and maybe some day no longer need that even, we have to find a way to pay for anything that might be necessary to do so.

And then of course there’s the time spent doing this. It’s taken years for me to get our son to the point where he can sit through an electric blood pressure reading. Years. But now he can and he’s no longer terrified by it.

So, I think it’s worth it. For every little thing that no longer brings him trauma to experience, that’s one less piece of my heart that needs to be found and glued back together. One less scary memory or experience for him. And a future of medical moments that are easier for everybody involved. So I spend the time and I spend the money because I have hope next time he won’t need to be held down if I do all of this, because I have seen what hope has done and what hope can do.