When my son was 10 months old and I was staring off a proverbial cliff into the unknown world of "special needs," I didn't have the emotional bandwidth to do much more than take one step at a time. I would panic if I thought too far into my sweet-cheeked faced son's future because I didn't know much more than that I really didn't know anything.
So I leaned on our doctors and therapists and eventually the early childhood teachers to tell me what to do. They wrote out our roadmap. Hit this target. Then hit this target. One step at a time. And that felt okay to me as a mother because they knew what they were talking about and I trusted them.
But the thing about roadmaps is that for the rest of the world, a child's life doesn't remotely resemble a roadmap. Most children have the luxury (and in my limited hindsight, I can also say dignity) to change their interests, change their moods and even regress here and there. They can express interest in a sport or music or art, and their parents will pivot to give them that enrichment. The winding path is the way forward, not a cut and dry roadmap.
For children living with a disability, the journey is usually preset and filled with measurable goals, written to be safe and attainable, and almost always based on a child's deficits as judged by a list of milestones. There is no luxury to drop a skill they don't seem to excel at in order to cultivate another they might have natural aptitude for.
But at the time, I couldn't see any of this. And even if I could have, there was no one there to tell me. There was no one there to whisper "why don't you ask HIM to tell/show you what he likes" or "this bubble isn't helping him learn to live in a world outside a bubble...and there isn't always going to be a bubble to keep him safe."
In my personal journey parenting three children, all with unique strengths and living with various disabilities, over the years I've found that one of the single most important voices I can listen to are self-advocates....young adults and adults living with disabilities who can share what worked and didn't work from a perspective that gets closer to my sons' perspective than I can ever hope to. Each story is different, but every self-advocate I've spoken with has left me with something that rooted into my brain or heart and helped me see the world I am helping my sons build in a new way.
This blog will feature self-advocates who are willing to share their perspectives on their childhoods. I hope their perspectives will give you a new way to view things in your family, and will encourage you to continue to seek out perspectives and relationships with self advocates in your community. - Cori, creator of Dreams Form Goals
If you are a self-advocate and are interested in submitting a post for this blog, please contact me using this link: https://www.dreamsformgoals.com/contact-me