Dear doctor who discarded my autistic son,
Remember us? I was the frazzled young mom who waited 2 hours to see you that afternoon. I had only slept for an hour and a half the previous night as that’s all my autistic child would sleep on any given night. I robotically tried to keep that same child busy while you took your time getting to the exam room.
When you did grace us with your presence, you hit my kid in the head with the door. Lucky for you, Logan demonstrated what an autism meltdown looks like in full force. I vividly remember you trying to step out until he had calmed down. I was over it at that point as I refused to budge from the door.
Yes, I did tell you to talk over the screaming. I was ready to get this day from hell over with as quick as possible. The look on your face when I wouldn’t move should have prepared me for the words about to come out of your mouth. I never have imagined hearing a doctor discard my autistic child.
You looked me dead in the eye as you boldly proclaimed that my child was unfixable. I can still remember every word you said as you told me to find a group home for him immediately before I got attached.
What? Who tells a mom to do something before they get attached to their child? Newsflash doctor, at that time, he was the only person who knew what my heart sounded like from the inside. We were already irrevocably attached.
The rest of your words were a blur. I heard you say the word autism over and over again. I took the brochures from your hands. You kept saying how my child would have no quality of life.
Autism had stolen him away from me. He would never recognize me as his mother. There was nothing I could do now but put him a group home and get on with my life. I couldn’t breathe as the tears fell freely down my face. You almost stole my hope, doctor, as you casually discarded my autistic son. Almost.
No one does better research than a mother whose child is suffering. My young family was in the seventh circle of hell at that point. It couldn’t get any worse. When you have nothing to lose, you find that you are able to do hard things.
I spent every available hour at the library checking out books. In a time when Google was new to the scene, I commissioned my husband to find out everything we could about autism. We poured over therapies, costs, diet, anything autism related. We attended conferences all over the country. If it had the word autism in it, we learned about it.
We took stock of our financial situation. We literally listed every problem Logan had that we needed to address then prioritized what to work on first. We spent hours upon hours filling out applications for services. All while caring for this child stuck in autism.
Our family was in survival mode but that was about to change. We learned how to do ABA therapy at home, how to do occupational therapy at home, speech therapy at home, feeding therapy at home. You name the therapy and we probably learned how to do it at home. Insurance didn’t cover it and we couldn’t afford to pay privately on one salary. We learned how to do it ourselves.
We stopped listening to doctors who were more interested in discarding our autistic son and turned to others who were interested in helping. We discovered that we were smart as well as capable enough to know how to help him. We knew his needs like no one else.
We researched ways to help him both conventionally and unconventionally. We started caring less about what other people thought and more about what helped our child. We lost a lot of friends and family in the process who agreed with that doctor that our autistic child should be discarded and we should get on with our lives.
I won’t sugarcoat it. It was not all rainbows and unicorns. It was hard. Like I don’t know how we did it hard. We got discouraged but we never lost hope. We remained committed as a couple to helping our child with whatever resources we had available.
We lost more family members and friends who thought we were crazy to cash in our 401k and use up all our savings. We bought term life insurance and set up special needs trusts so he would be cared for if the unimaginable happened.
We drove clunker cars, skipped meals, and sold everything we owned. Everything. Our bed, our wedding rings, our appliances, our clothes, our furniture, everything.
As Dave Ramsey so eloquently says “Sell so much stuff the kids think they’re next.” Every time there was a free meal at church, we were there. We would get up early to be first in line at the food pantry. We counted every penny.
You’re probably wondering why we would do that for a child deemed unfixable. Sounds kinda crazy when you think about it. Let me tell you a secret. I was already “attached” and he wasn’t broken.
He legitimately needed help navigating this crazy world due to his autism. He needed intensive interventions to make life bearable. He approached life from a different angle. His brain was wired differently.
We had to be creative in teaching life skills as well as academics. We weren’t trying to fix him but to let him live his best life possible.
All that effort culminated when that “unfixable” child graduated on time from high school. That “unfixable” child may go to college albeit on a slower schedule than his peers.
He may start his own herpetology business. That “unfixable” child got his driver’s permit after practicing for 2 solid years every single day. I anticipate that “unfixable” child being able to live independently sometime in the future.
He will need supports to make him successful. Needing help doesn’t make you a failure. It makes you successful.
Instead of telling parents who obviously know there is something wrong that their child is “unfixable” perhaps you could tell them there is hope. Their child may look different than they envisioned. Their future may seem uncertain.
They will want to quit on more than one occasion. What they need to hear from you is that no matter what happens there is hope for their child. It’s the same child who walked in with them but now they know a course of action to help them.
I still pray for you after all these years. I have long since forgiven you. I am grateful that you felt it was your job to make me aware of how “unfixable” my child was as well as what you deemed the correct course of action. Eventually, I would accept the challenge to prove you wrong. Challenge accepted and accomplished.
