My friend Ellen Stumbo recently wrote this excellent post, which unfortunately captures so much of our experience. I strongly recommend you read the whole post. But here’s a taste:
Over time, as my two children with disabilities have become older, the isolation has continued to grow. It’s in the offers for help that stopped coming. It’s in the lack of birthday party invitations. It’s in the lack of considering the needs of our family when invited to attend certain events. It’s in the lack of being included to a girl’s night out because my life has changed so much from that of my former friends that we have little left in common, so they stopped asking. Maybe they stopped asking because I said no too many times… but I wish they kept asking.
We’ve felt this kind of isolation for a long time. But it’s significantly worse for us here in west Michigan. We’ve been here nearly 5 years now and I don’t think our son has been invited to a birthday party or for a sleepover. (One friend has invited him on multiple play dates, and I want to recognize that. We love you K. But it’s one friend.) And all of this is obviously magnified by the pandemic.
I confess, I often isolate myself, too.
Sometimes I am too exhausted, mentally or physically, to say “yes.” Or perhaps I really wanted to go, but I am home and tired.
In the past 2 months, we’ve spent at least 20+ hours pushing back on our son’s public school district’s attempt to cut his services: writing emails, talking on the phone with folks in the state department of education, working on the paperwork for a state complaint, etc… Because of work and parenting demands, most of this has happened on the weekends or at night after the kids go to bed.
We’re tired. Worn down. Frustrated.
And we feel just as isolated as ever. Perhaps even more.