Seeking support in difficult times
As a special needs parent, I feel like I'm damned if I do and damned if I don't
Special needs parenting is hard stuff.
Most days I am able to glide through, fit in, and seamlessly smooth over the rough surfaces.
Other days I am reminded just how alone I am, how my community of friends empathizes, but not one of them truly understands. They aren’t able to fully comprehend and process how their actions can send my child into a downward spiral, a meltdown that may take me hours to extinguish.
The loneliness and exclusion falls solely on me. I haven’t spent enough time building a community around myself of people who understand. I feel guilty when I have to open up and express how someone’s actions may impact Carter, and it puts a burden on them.
I don’t expect anyone to know off-hand what might trigger him, but I do find myself thinking more and more that I need to start surrounding us with some families who are in our circumstances.
I think Carter sees his own differences and lately seems down almost all of the time. My once extremely happy-go-lucky kid is monotone and absent at times. I feel like I need to get him more into a group that he can identify with and in return I also can identify with.
The pandemic is adding to the isolation. The few peer social interactions he received through his pediatric therapies have halted, social skills groups are basically non-existent in this area and there doesn’t seem to be a lot of options to help us put ourselves out there.
Now the plans for opening schools in the fall won’t rid us of this social isolation either. I have never felt more lost in my life; any choice is a bad one and there is no winning either way.
Lauren Martone is a blogger for ParentingNH from southern New Hampshire. You can contact her at email@example.com. Lauren and her family’s story were featured in the July 2015 issue of ParentingNH and in the July 2018 issue.