Dear Doctor ,
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 child with autism 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 you got to witness an autism meltdown in full force. I clearly remember you trying to step out . I was over it at that point so 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.
You looked me dead in the eye as you boldly proclaimed that my child was unfixable. I vividly remember the moment 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, he knows what my heart sounds like from the inside. We’re already attached forever.
The rest of your words were a blur. I heard the word autism. I took the brochures from your hands. I heard you say my child would have no quality of life. Autism had stolen him away from me. There was nothing I could do now but have another child and get on with my life. I couldn’t breathe as the tears fell freely down my face. You almost stole my hope. 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. When you have nothing to lose, 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 as well as anything autism related.
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 stopped listening to doctors who were more interested in telling us how awful our situation was 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. 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.
I won’t lie. We lost a lot during those years. One thing we never lost was hope. We remained committed to helping our child with whatever resources we had available. We lost family members, friends, as well as used all our savings. We drove clunker cars, skipped meals, and sold all of our belongings.
You’re probably wondering why we would do that for a child deemed unfixable. Sounds kinda crazy. 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.
All that effort culminated this week when that “unfixable” child graduated on time from high school. That “unfixable” child will start college in the fall albeit on a slower schedule than his peers. That “unfixable” child will get his learner’s permit this summer and begin to learn how to drive. I anticipate that “unfixable” child being able to live independently within the next 5 years.
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.
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.