As special needs parents, we are all familiar with feeling overwhelmed and underprepared. None of us run around thinking we’ve got this nailed! There are times when discouragement and doubt are my daily companions.
Spiritually, I’ve spent a lot of time in prayer coming to find acceptance of this reality in my life. Psychologically, I’ve spent a lot of time in therapy healing traumas (special needs parenting related and not) and working on balancing my own physical needs to stay well nourished and rested. The best support I’ve ever received, however, came not from something I did but from something my daughter’s doctor said to me.
My daughter’s brain is complicated. Her neuropsychologist once described it like a brick of swiss cheese- where each slice you take has holes in different places. Every day is a new adventure as we adjust to parts that are just not working. One day she can remember complicated plots and details from stories she read or heard weeks ago, other days she can’t remember what to call the second meal of the day. This, combined with frequent and often unpredictable seizures, has made formal schooling quite difficult for us. We have tried a variety of settings, enough to make a post of its own, but the mixed time approach combined with COVID restrictions and closures was running us both ragged. While tossing the advantages and disadvantages around with her neuropsychologist I felt that old familiar sense of failure creeping into my brain. All the hours we spent trying to find the “perfect” balance wasn’t working and clearly it was my fault.
And then she said it.
“Look at me.” (She really made me look at her.) “Look how far your daughter has come in the last three years since I first met her. That did not happen in a few hours of school each week. You need to start giving yourself more credit for what is working.”
It didn’t take me long to realize this was about way more than where my child does the majority of her learning. This wasn’t just about recognizing my capabilities to know and adjust to her brain’s many moods. In fact, our neurologist said something similar when he told me I could trust my instincts about the difference between a seizure breakthrough caused by med failures, illness, or some new trigger. He went as far as to say he now trusted me on certain things better than he trusted his training because his training wasn’t specific to my child.
I’m also positive I’m not the only special needs parent who struggles to see the good that they do each and every single day. To focus on what they do know and can do instead of what they don’t or can’t. Isn’t that the way we try to present our child to the world? Why are we so quick to do the opposite when it comes to ourselves? Maybe your child’s health care providers and school teachers have been less than encouraging. Maybe your friends and family don’t seem to particularly see the value in what you do. I would not be at all surprised to hear that discouragement, doubt, and feelings of failure and inadequacy plague you. Society certainly has a low value for our contributions as special needs parents.
Here is your daily reality check- Not only do you do a lot, I think my daughter’s doctor is right. I think you need to start giving yourself more credit.