My 13-year-old son Declan is non-speaking, autistic and uses an AAC device to communicate. We haven’t moved at all yet Declan is in seventh grade and has already attended twelve different schools.
That is a lot of change for someone who doesn’t tolerate routine change well.
We love our special education co-op but the lack of a physical school or local classmates takes a giant toll. I wish we had a regular school community and I had the support of parent peers.
Overall, we are really isolated. It’s taken me years to make peace with it but we don’t do normal, everyday things like families with neurotypical kids do.
Four years ago, in Spring 2020, at the start of the pandemic, I saw my friends on social media complain that their kids couldn’t see their friends, their kids felt lonely, or their kids were unable to articulate their feelings about the stay-at-home sheltering—that was the first moment that I could relate to others’ parenting posts, more than literally any other posts I’ve ever seen.
Except that’s where I start. That’s where I was and am—before, during, and after quarantine.
I know it’s apples and oranges. I have always loved reading about everyone’s fun kid stuff. I adore seeing what everyone is doing! That’s just not my own experience with parenting, for the most part. I rarely talk about this stuff, even to other friends who are parents of autistic kids.
I feel like even if we get to rarely socialize, we like to take a break from this topic.
I often think about something Brené Brown said, paraphrasing, don’t look for disconnection because you will always find it. So I don’t go looking but I sometimes feel it.
In April, it’s Autism Awareness/Acceptance Month. The multiple autism communities are often at odds, and it feels quadruply so in April. I am flooded with all sorts of feelings. I never want to fight with anyone on the internet.
As a caregiver of a child with high support needs, I have made friends with similar caregivers on social media. I also support many self-advocates fighting for disability justice. I have learned so much from non-speakers especially.
I follow many in the AAC community, including speech language pathologists. I am eternally curious and now learning about legislative advocacy. I am so grateful for virtually befriending and supporting the work of many.
Written by Bridget Fitzgerald of Let Me Spell It Out
