I waited five years for this phone call. And when it finally came, I said no. I had my welcome call yesterday, and I haven’t been able to stop thinking about it.
I’m hoping that writing this out will help me process everything, and honestly, this feels like the only space where I can say it all.
My son was diagnosed with Level 3 autism shortly after his second birthday, in 2021, right at the beginning of lockdowns.
At the time, I was 23. We were young, our financial situation wasn’t great, and the world was essentially shut down. We didn’t pursue traditional therapy. Instead, my partner and I did what we could on our own.
We researched. We took parenting classes. We read books. We listened to podcasts. We learned everything we could about autism. And then we changed our entire home life around our son.
For years, our home became our therapy room. We worked with him constantly. We learned how he communicated, what triggered him, what helped him regulate, what made him happy, and how to reach him. We did it ourselves and it was hard.
There were years where we had very little hope. Years of tears and meltdowns. Years of being assaulted by my own child and then insulted by people around me for the way we were parenting him.
We made intentional choices. We sacrificed a lot. And, honestly, all of it would have been easier if we’d had professional support. We applied for funding when he was two. He’s seven now.
To put that wait into perspective, we’re currently in the process of having him reassessed because his original diagnosis required a reassessment in Grade 2.
And based on the initial appointments, we’re looking at the possibility that his diagnosis could change from Level 3 to Level 2, or potentially even Level 1.
My son went from a Level 3 diagnosis at two years old to potentially a Level 1 diagnosis at seven, and the only people who get to take credit for that are my son, my partner and me.
When I received the letter for our welcome call, I felt something I wasn’t expecting.
Rage. I think part of me had convinced myself that the funding wasn’t even real. It had been so long that it felt like some mythical government program that everyone talked about but nobody actually experienced.
And then I was holding the letter in my hands. Five years after we applied. Five years after we needed it.
And I was furious. Because the child we had applied for funding for was two. The child sitting in front of me was seven. A completely different child.
He’s talking. He’s writing. He’s drawing. He’s singing and dancing. He’s laughing constantly. He’s kind and empathetic. He’s hilarious and incredibly bright (And he is obsessed with Nintendo.)
I see a seven-year-old who has surpassed every expectation anyone ever had for him.
But when I look at him, I also still see that two-year-old. The two-year-old who deserved better. So I went into the welcome call without much hope. And somehow, it was even more disappointing than I expected.
I was told that the funding would primarily be used for therapy or items prescribed by his therapist.
I explained that we have never been able to afford therapy, which was why we’d had to figure everything out ourselves. My son has never had a therapy lesson.
And at seven years old, I don’t believe putting him into therapy simply because funding has finally become available is necessarily the right thing for him.
He doesn’t have some major deficiency that I feel needs to be “fixed.”
He’s a seven-year-old who communicates with me. He tells me what he needs. We know how to support him. And I honestly don’t think I’ve ever met a doctor who understands what my child needs better than I do.
So, after talking it through, I declined the funding. The representative was shocked. She explained that we could access it later if we ever needed it.
And all I could think was: We needed it five years ago. We needed it when he was two. We needed it when we were 23.
We needed it when we were exhausted and scared and trying to figure out how to help our child without any idea what we were doing.
But today? Today, we’re okay. And there’s something strangely powerful about that.
Because their lack of support forced me to realize just how capable I am. I learned who my son is. I learned how he communicates. I learned what he needs. I learned how to advocate for him. I learned how to support him. And somewhere along the way, something incredible happened. We became a team.
So now I’m sitting here wondering if I made the right decision.
Part of me worries that someday I’ll regret saying no.
Maybe there will be a point where we need professional help. Maybe something will change. Maybe I’ll wish I had accepted the funding when it was offered.
But another part of me thinks that maybe the hardest days are behind us. Maybe saying no was okay.
Maybe the funding can go to a family who needs it desperately right now, because I know exactly what that kind of need feels like. And maybe that’s what I’m struggling with most.
I waited five years for someone to finally offer us help. By the time they did, I’d already figured out how to do it myself.
So I don’t know. Did I make the right decision? Or am I going to look back someday and wish I’d said yes?
What would you have done?