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The Not-So-Secret Word That Led to an Advocacy Breakthrough
Every parent wants to do what is best for their neurodivergent kid. Regardless of our kid’s age, we continue to advocate with and for them. And the list of things we should… be doing, considering, and researching… well, it feels endless.
When our youngest son (if you are new here, I refer to him as “C”) received his autism diagnosis, we did EVERYTHING they told us we should do.
We had health insurance, and yet, we still paid close to $30,000 out of pocket 👀🤢🤮
Each time we visited a doctor, any doctor, they referred us to a new doctor, specialist, or therapist.
What is the price of supporting our neurodivergent kids?
We had a high deductible. We went to out of network providers just to be seen faster and had appointments 2 to 3 times a week.
Between testing, evaluations, and follow-up appointments, we spent hours in the car, hours in waiting rooms, hours doing evaluations.
We lost days, wages, and so much time. We were exhausted and still didn’t really understand any of it.
And C’s meltdowns turned more frequent and lasted longer. My meltdowns turned more frequent and lasted longer. My oldest son withdrew, my middle son developed his own medical issues, and my husband and I were just barely holding on.
Looking back, it was just too much.
“Make happiness a priority and be gentle with yourself in the process.”
Bronnie Ware
As the referrals poured in from our doctor, I finally gathered the courage to say, “no”.
We didn’t need to do it all, all at once. Some of it we didn’t need to do at all. But we didn’t know that was an option.
And no wonder the meltdowns occurred more often. We were exhausted, overstimulated, dysregulated, frustrated, and confused.
That year we travelled hours in the car weekly, looked at sterile walls more than the walls of our home, and I knew in my heart it wasn’t sustainable, but how do you defy the “experts”?
I became really vocal towards the end of the year. I started connecting with other families raising neurodivergent kids, and they connected me to more families.
And I realized… I need to be a better advocate for my son. I need to model how advocacy works, so he can learn how to speak up for himself.
“No,” is a complete sentence. Saying, “no” is sometimes the word that we need most when advocating.
We believe the medical professionals when they tell us what is right for our child.
But there is a huge gap between what we know about our kids and what they know about our kids.
13 years later, and I still get calls weekly from people trying to figure it out. They want to honor their and their child’s limitations while not limiting their child’s potential. And now, in retrospect, I can say:
“You don’t have to do it all today.”
“You won’t figure it all out today.”
“You can say no.”
And the relief I hear is palpable.
Join the Community for Parents and Caregivers Raising Neurodivergent Kids
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