Tonsillectomy 1, mom 0

When a child with autism has surgery, recovery is harder and more complicated

Special needs parenting is not something you train for or learn about it in school. It is on-the-job training.

They say that parents of children with autism have stress levels similar to those of soldiers in active combat, and may experience PTSD like war veterans.

A major contributing factor is our constant state of heightened awareness — we are always on the lookout for “threats.” Threats can present differently here, whether it’s a simple change to a routine, sensory issues or safety concerns.

Unlike soldiers, we special needs parents train in the moment, often in the middle of our own life’s war. I already carry a PTSD diagnosis from our NICU stays.

Carter got his tonsils and adenoids out this last week. The doctors prepared us for what recovery would look like for a neurotypical individual. What the doctor didn’t prepare us for was what recovery for someone with autism might be like.

This. Has. Been. A. Struggle.

We are battling middle-of-the-night panic attacks and meltdowns, and curt throat clearing, which doesn’t help recovery.

Did I mention the meltdowns?

Carter goes into this almost catatonic state where we can’t get through to him. He makes this wailing sound, cries, and works himself up into a hyperventilating state; he rocks back and forth and is clearly uncomfortable. He has induced vomiting and has a sensitive gag reflex to the scars forming back there in his throat.

There aren’t enough outlets for special needs parents to get the support they need when they need it. We’ve received some incredible coaching throughout our journey since diagnosis but we feel so very alone in this battle now.

We know — and are thankfully reminded by our supports — that this is only temporary and we won’t be stuck here forever. Hopefully I can help another family that has to experience something like this so that they won’t feel so alone.

If you have a special needs family in your life, do something extra for them today.

It’s now 3 a.m. I need to go encounter yet another oral aversion meltdown to the medication (yes, I have suppositories on hand as back up) and then pray for a few hours of sleep before the littlest one wakes up.

Lauren Martone is a blogger for ParentingNH from southern New Hampshire. You can contact her at lmart0825@gmail.com. Lauren and her family’s story were featured in the July 2015 issue of ParentingNH and in the July 2018 issue.

Categories: Carter’s Corner