Special Needs Kids & Medical Procedures: Tell or Wait?

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After enduring two years of braces, our son’s smile lit up the x-ray machine the day he got his braces off. To our disbelief, four teeth that were not part of his smile on the surface illuminated the tech’s screen like a hurricane headed perfectly for the teeth we had just spent a small fortune, 24 months without Skittles or caramel, countless brackets and wires, and miniature rubber bands fixing. Needless to say, next week our son is having his wisdom teeth pulled. Today is Friday, the procedure is on Wednesday, we have not told him, nor do we plan to tell him until Tuesday.

Am I crazy? Heartless? Or perhaps, just maybe, am I on to something?

Our son is incredibly complex. He has been tested and tested, and although he checks most of the “boxes” labeled ADHD, ADD, ID/DD, anxiety disorder, Autism, he doesn’t fit exactly into any of these categories specifically – so about 10 years ago we just quit labeling him at all. We continue with the recommended therapy and medication regime, but we’ve basically given up on how to describe him. He is simply Dylan.

Any mom raising a child with an exceptionality will tell you there is freedom in letting go of the label. However, some of the challenges we face by not having these labels are the processes in which to prepare our kids and the professionals who will work with them, with things such as medical procedures. Many times we are simply “winging it” as are the medical staff along for the ride—granted, they are usually fabulously trained and educated but not always well-versed in our child’s particular ticks.

Four years ago, our son’s doctors requested an MRI of his brain. It had been a couple years since I had dealt with any type of hospitalization, so I was a little rusty on protocol and was shocked when a “Child Life Specialist” came into the room with a doll and accessories to describe in detail to Dylan what the procedure would consist of…including an IV for sedation. Although this was meant to be helpful, it was anything but that. Dylan panicked and what should have taken 2 minutes to insert the IV, took about 2 hours of the specialist negotiating with our highly trained adolescent negotiator. When it felt as though we were holding up the entire hospital’s schedule for this procedure I finally demanded an “old school nurse”. Thankfully, the hospital staff abided and found us the oldest and crankiest nurse who walked in, took one less than impressed look at Dylan, ordered everyone out of the room except Dylan, me and my husband and said, “Your dad is going to hug you, you are going to look at your mom, and I promise, if this hurts, you can kick me.”

Voilà, IV inserted. Crisis handled.

Fast forward to yesterday: the phone rang. It was the surgeon for Dylan’s wisdom teeth (who has already had the pleasure of meeting our son and determined almost immediately that Dylan fits the criteria for complete medical sedation—with IV) ready to schedule the procedure. I stepped outside, scheduled it, and came back inside already prepared to answer, “Who was that?”

Upon learning of the need for this procedure, my husband and I agreed that we would share with our son what has to be done, it will be matter of fact, non-negotiable, and we will wait until the night before to tell him. We feel like the more we minimize the event, the less anxiety he will build up. As much time as I spend preparing a positive environment for Dylan, I can’t protect him from everything. The unexpected for his curious mind can be overwhelming so the best I can do is try to be prepared myself.

I know he is going to be anxious. I also know that through therapies, he has the tools for self calming. So, am I doing the right thing? Ignorance is bliss, right? We will find out on Wednesday.

 


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