When it came to realizing my child was disabled, it was a slow burn. I assumed our most difficult challenges ended the day we left the special infant care unit. I assumed we had finished the marathon and we were on our way to “normalcy”. After discharge there were a couple doctor referrals to follow up on, but by the time Asher* was one, he was getting occupational, vision, physical, and speech therapy weekly, along with regular doctor visits and chiropractic care. We had coasted to 4-6 appointments per week. Therapists and professionals told me that I needed to continue therapies at home even after the sessions ended. So, I obsessed over performing the tasks of each therapist. I thought I was doing what I needed to do to make things better and to get him where he needed to be. But the more of his therapist I became, the more I lost my motherhood. I forgot how to be his mom and the emotional support I provided for my typical child didn’t translate the same way to Asher. Eventually, all he was learning from me was that he couldn’t perform the tasks I needed him to perform. He was learning helplessness. The inability to meet impossible standards because the milestones we set for him were light years out of reach.
Asher was disabled from birth. I didn’t know it at the time, no one did, although there were some physical signs of a genetic abnormality. He was born disabled and there was nothing any of us could do to change that fact. Had I known this, I would have approached his care differently in every way. But everything is in hindsight and it’s a complete improbability. No one has a crystal ball, and you would never want to put a ceiling on a child from birth. But it wouldn’t have been a ceiling, it would have been my own expectations that I would have adjusted. The knowledge would have opened the door for more love and less frustration.
Instead of desperately attempting to breastfeed him every day, instead of trying to get him to look at me, or roll over, or turn pages, or say words he couldn’t say. I would have given him time and space. I would have relaxed, taken a breath, watched my child play in his own way without the hidden desire for him to do something more. I would have watched him like I watched my daughter, with awe instead of desperation. I would have STILL gotten him therapy, but it would have been a gentler approach. I wouldn’t have let the therapists come in and force play on him, force his body to move in ways that he wasn’t ready for. I would have stopped begging him to perform constantly for my own relief, to feel like we were making progress. Progress towards milestones he wasn’t developmentally ready to reach yet.
The power in acceptance
As Asher grew, he did begin to meet some milestones while others drifted further away or remained stagnant, but it was an endless battle to move forward in imperceptible increments. It wasn’t until he had his first seizure that I realized it, finally admitted it to myself. My child is disabled. MY CHILD IS DISABLED.
It would take another year or two to go from knowing my child was disabled to understanding and accepting what that meant. And that’s when I acquired my power. Knowing and accepting and understanding that my child was disabled gave me the confidence to advocate for his rights. It gave me the voice to say “no” for him when people ignored his non-verbal attempts do it himself. It gave me the power to tell his teachers and therapists how I want them to engage with him. It gave me the power to prioritize my child’s well-being and consent above any other goals. My child’s disability became my argument for accommodation. What I finally understood was that it was not his responsibility to accommodate me or anyone else by performing impossible tasks. It was never supposed to be his job to accommodate me or to meet society’s impossible standards for him. It’s supposed to be my job as his mother and our job as a society, to accommodate him so he can participate in the typical world as best as possible.
What would you do now?
Let me ask you this. If you’re a parent of a child currently facing a multitude of doctor and therapy visits, what would you do right now with that knowledge? Most kids aren’t diagnosed with disabilities like Autism or ADHD until two or three or even much later, but have clear differences in development before then. What would change for you if you knew they were disabled or at the very least might be disabled? How would you use your power? What is the one thing you would request? How should you, your child, your family be accommodated? Not just in therapy, but in life.
If you’re a teacher or a doctor or therapist, what would you do for that child or family right now to accommodate them?
*Name changed to protect privacy
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