beautiful truth: i wouldn’t change a thing about my child

Image is a of a pink earth.  Text reads: "I wouldn't change you for the world.  I'd change the world for you.

Image is a of a pink earth. Text reads: “I wouldn’t change you for the world. I’d change the world for you.

Yesterday, I was scrolling through my Facebook news feed and saw that my friend, Jennifer–an Autistic activist, was upset by a blog post written by a popular blogger.  Basically, the post was calling out parents like me that don’t want to change our kids.  He says we are lying.  I wouldn’t care except for the fact that my  friend Heather refers to him as the “Prom King” of parents to Autistic kids because he has such a huge following and hero worshipers.

He relied on the tired old premise that those parents that don’t want to change their children do not have the same kind of Autistic child as he has.  Meaning “too high functioning.”

People like my daughter and Amy Sequenzia are routinely written off because they don’t speak and they need support in caring for themselves.  I’m sure that Evie and Amy (both have Epilepsy) would agree that some of the medical comorbids like Epilepsy, that are often mistakenly considered part of Autism, really do suck.  If I could take away my daughter’s Epilepsy? It would be gone in a New York minute.

But.  BUT.  Loving and accepting my Autistic child is not just something I say.  I’m not trying to convince you.  Or myself.

I am repeating my beautiful truth.

And I am hoping for your child and every other Autistic child that it will be your beautiful truth someday too.

You’re confused?  Still?   Let me help.  Again.  This is worth repeating over and over again.

I wouldn’t change my child does not mean I don’t want my child to learn and grow.
I fight for my child to be given the tools that she needs to develop and learn.  Don’t confuse my fight for her to be given the tools to access education with a desire for her to be neurotypical.  Don’t confuse my fight for her acceptance with a lack of interest in her educational progress.

Autism is not comorbid medical conditions.   Autism is not Epilepsy.  Autism is not sleep disturbances.  Autism is not gastrointestinal issues.  I like the way Nick defines Autism the best.  You can read his entire “What is Autism” article on his awesome blog, “NeurorCosmopolitanism.”

“Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.”

Wanting my child to progress is not the same thing as wanting her to be “typical.”  I want my child’s ability to communicate to progress.  I don’t care if she progresses by typing.  I don’t care if she progresses by using picture icons.  I don’t care if she begins to speak.  I don’t care if she begins to write messages in the sky–except that this is not an accessible communication tool for her.  She can progress towards goals that are different than the ones you have for your child.  And it is still progress.

I’m not acting so damn strong.  I am so damn strong.  For me, strong is knowing that I am a better parent when I use antidepressants to control my anxiety and help me sleep.  Strong is knowing that I cannot do this alone and not being afraid to ask for help.  Strong is respecting my child’s privacy and reaching out privately to those that can help me with challenges.

We don’t have “horror stories” involving Autism.  We have challenges that we work through.  We have ups.  We have downs.  We have successes and failures and all of the stuff that comes with each.  We have horror stories about how my child is treated.  Oh yes.  And we have horror stories about the ways that my words are twisted and misconstrued and taken out of context when I say I don’t want to change my child.  Yep.  Yep.

I’m not fighting insurance companies for more coverage or more services.   It is mandatory that insurance cover ABA services here in Vermont.  WE DO NOT USE IT because we wouldn’t change a thing about our child.

I wouldn’t change a thing about my child.  You don’t have to believe me for it to be true.

9 thoughts on “beautiful truth: i wouldn’t change a thing about my child

  1. You are a great mom to both your children! You are right, the epilepsy and the sleep disorder could go away.
    I wouldn’t change myself either. What the “prom king” and the “mommy warriors” don’t get it is that we only know how to be who we are. They make everything about them, and forget that we are individuals, our experiences are our own and they have to matter to us only. Others can be part of these experiences but they cannot define them for us. They can help us with steps, but they cannot decide that what we experience is good or bad. They cannot decide that what they perceive as the “right” way of being is the only one, when what they perceive as “wrong” is the only experience I have of me. I cannot miss neurotypicality. I never experienced it. I live the life I have and I am pretty happy. If I change myself, it means everything I know and experience would be lost and what I know and how I experience things are important to me.

  2. I just wrote an article separating the human life perspective from the autistic life perspective, saying a lot of what you are saying here. If you would like to read it, here is the link to it:

    evolutionofexpansion.com/general/human-life-perspective-vs-autistic-life-perspective-part-i/

    I am so happy to hear from parents who do understand their autistic children, Yes, autism is a life perspective. No, I would not change it for myself. Yes, there are challenges that come with it, but I personally love being autistic. It is a way of being human, and there is nothing wrong with it itself. The problems we face, for the most part, as autistic children, and adults, come from a ununderstanding, unaccepting society.

    Improvement in society starts with us, individually. I love to have found this article! You are a wonderful parent. Thank you for understanding autism. Thank you for understanding your child. Thank you for making things better for all of us, by being you! 🙂 ❤

  3. This blog is truly remarkable. There are so few blogs on the internet that speak for people with disabilities and not just about them. What you do here is so important. Keep up the fantastic work!

  4. Yes, yes, yes! You say everything I mean for my daughter as well! Too often the fact that we don’t do therapy is seen as not caring, or not coming to terms with her being autistic. We believe in teaching her and giving her the tools to grow and progress in her way. She is now typing, and it is wonderful. That isn’t a step toward wanting her to speak or wanting her to be typical; it is her growth and her communication. I wouldn’t change her, not ever! That doesn’t mean I want her to remain six. I want her to have access and acceptance and to grow in her own way. Thank you for all you do for all our children.

  5. Love your post! I have a high needs child with autism and wouldn’t change him either. He has his own God ordained journey in life and he’s happy! How selfish would it be of me to want to change and interrupt God’s plan just to suit my shallow and immature scope on how my world ought to be. My son is happy which means I’m doing my job right as a parent. If you perceive your child as miserably being in the clutches of autism then are you sure you’re doing your job right?

  6. Wow!!! I love this post. Thank you so much for sharing and so glad I found it. I feel the same and often feel I am on an island by myself. I have two beautiful boys one who is considered high functioning one considered moderate to low and I feel the same about both of them.

  7. Amazing. ..I love to read this post.. .m a mother of high functioning daughter n I also feel the same thanks for sharing this post

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