The Chronic, Unremitting Stress of Caregiving for Child with a Disability

I'd like to acknowledge the unremitting stress of caretakers for chronically ill and/or disabled children:

We, the caretakers, inhabit a strange world, which is virtually impenetrable to outsiders. Every child's issues pose unique challenges to the families, but we all share one thing in common: abnormally high stress levels.

Sure, raising normal children can be stressful at times. I have experience with both, and after comparing the two, have concluded that they don't exist in the same universe. I've plotted the stress levels for those of you who like visual aids:

Chart of my experience with Stress as a Parent

The chart shows the parent stress level of a normal child on the dark black line.  As you can see, the stress starts between "moderate" and "low," peaks at the terrible twos and threes, dips again through the wonder years, before I predict a spike for the teen years. By contrast, the disabled child, shown in the white line, starts at "high," quickly proceeds to "insanely high," and hits "mental breakdown" before finding equilibrium between "high" and "insanely high."

To put the scale in perspective: "insanely high" is equivalent to the white-knuckle part of a roller coaster... if you hate roller coasters.

I often feel like a stranger among people from the outside world. I frequently find it hard to relate to them, and the effort to do so can be exhausting and stressful in and of itself.

Sometimes this stress gets the better of me. It can lie dormant for long periods of time, only to be triggered by a particularly frustrating episode. It explodes in the oddest places at people who's only crime is being in the wrong place at the wrong time.

Stress is the chronic caretaker's constant companion. It gnaws at our lives. It steals years from us (as the following video explains). According to a study of mother's of children with significant disabilities, caretakers can age at up to six times the normal rate.

This blog is dedicated to the caretakers.

You do the best you can with the incredible strength you muster daily. Though no one around you understands your turmoil and your pain, it is real. I get it. I understand your profound exhaustion, but I can offer you no more than recognition and solidarity.

I wish you peace and I wish you well...

#disability #parenting #specialneeds #stress #chronicstress #chronicillness #caretaker #longtermcare