And “Better” Means?

On our last trip to California, I was cuddling my friend Melanie’s three-month-old daughter (her first baby) when Melanie gestured toward Martin and asked, “What would you say has been your favorite age?”

Melanie knows Martin is recovering from autism, so I could answer: “It’s weird for me. My parenting journey hasn’t been traditional. Every day he can relate in ways he couldn’t before, and can communicate more, and can have more conversations, and play more games, so I would say each age he hits is my new favorite age.”

Later, reflecting, I questioned the implication of my response. If I enjoy parenting more—to be honest: if I enjoy our whole relationship more—as Martin inches toward recovery, does that mean that I value neurotypicality more than appreciating Martin wherever he is on the journey? Does my focus on his future take away from our today? If we had never discovered biomed, if Martin still lacked functional language and threw constant fits, would I resent parenting my own child?

Years ago, I described my own failure to “grieve.” Autism parents are often told to let go of the children they thought they had (i.e., the neurotypical children with standard futures) in order to embrace the child they do have (i.e., the children with autism and divergent futures). As soon as I realized that recovery is possible, I set aside the grieving process in favor of fighting. Throughout that fight, I’ve maintained that I’m not trying to change who my son is, only to dig his true nature out from under all that autism. I’ve also maintained that I love Martin fully and completely, with or without autism, whatever his future holds, however we have to parent him. All that is true.

But something else is also true, and I reckon it may be the most controversial declaration I’ve made on this blog. At least, judging from my impulse to go hide under a blanket and pretend no one will ever read this, it is my most controversial declaration. Here goes: I think it is better to have the chance to live without autism. Whatever unusual ways of seeing the world autism can bring, neurotypicality is generally preferable. We humans become fulfilled unto ourselves by relating to others, whether through physical affection, cyberspace communications, books, poems, common goals. Autism hindered Martin’s ability to relate to me, and mine to relate to him. That is why his life and mine, our common and intertwined life, is getting better as his autism fades.

To anyone living with autism and offended by this post, I apologize. This is my opinion, and based on my experience with my son. Any opinion is subject to change, and I freely admit that participating in a recovery journey may be usurping joy I would otherwise find day-to-day if I were to accept Martin’s autism as who he is, instead of what burdens him.

Maybe I’m saying I know why I’m Finding My Kid. I’m Finding My Kid to make life better.

I’ve built walls,

A fortress deep and mighty

That none may penetrate.

I have no need of friendship; friendship causes pain.

It’s laughter and it’s loving I disdain.

I am a rock,

I am an island.

—Paul Simon

8 thoughts on “And “Better” Means?

  1. I feel the same as you, I have for years and you couldn’t have said it better. Great “declaration”. Keep on fighting, there is no reason to grieve.

  2. I really enjoyed this post. I think you have the right to feel however you feel about this subject. People react different, and at least you are being honest. I think it is normal to feel this way. I am a 3rd grade SPED teacher, and I love this post. I love how raw and truthful you were. Keep on pushing and you’ll figure it out. 🙂

    • When I saw that someone had commented on this post, I was almost afraid to look. I fear (and 100% understand) the reaction of parents who don’t want to hear that their children could be “better.” I was so relieved to read you sympathetic words. Thank you.

      • No absolutely not. You have a right to feel the way you do and that’s a fact. It’s hard to deal with what your going through and no one else would understand because they aren’t you.

  3. I feel the exact same way. And this is why we fight to learn how to get the right support, the right school, the right food. Keep it up!!

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