You Say You Don't Want a Cure? Well I DO!

You Say You Don't Want a Cure? Well I DO!

You say you don’t want a cure.  Well I do.

I get why you don’t… this is a part of your child, an imperfect piece perfectly imbedded, merged, marinated, simmered and fused within every nuance of your child.  You can not separate autism, or epilepsy, or down syndrome, or whatever it is from your child without removing what makes him… him.  I completely respect that.  I get it.  But will you get me?

I want a cure.

I want a cure for J’s epilepsy that claimed half his brain, leaving him with only his right hemisphere to take the load of his development.

I want him to be without his sensory processing disorder that makes events that he would otherwise love impossible for him to attend.

I want him to function without his cerebral palsy that refuses to allow him the dignity and independence of buttoning his own jeans.

I want a cure for J’s autism that keeps him from connecting the way he so desperately wants with his peers.

I’ve yearned to write this post for some time.  Tonight made it happen.

Tonight he took a break from his iPad reward for a good day at school.  Having decided to accommodate my pleas for him to grab a fresh breath of air, move his limbs, interact with kids, he reluctantly ventured outside to negotiate relationships.

J is 9.  He looks like a 11 year old.  He emotionally is / feels like a 4 year old.  He thirsts to connect with peers… though I’m not certain what ‘age’ his peers really are.  To him, younger kids are less… dangerous.  They’re more likely to join in his games without sideways glances of disapproval and, quite frankly, looks of repulsiveness and rejection that older children can give.

One of the friends he wants so badly to interact with belongs to that ‘younger’ class.  As much as he tries, for as much as we’ve attempted to teach appropriate interactions with her, his attempts to engage her with his favorite pastime play of “Roar” and “run from the dinosaur / monster” is met with shrieks of fear and a panicked run for the safety of her home.  Tonight was no different with the exception of the added concern of fleeing while safely wheeling her stroller of babies in an effort to free them from their proposed captor.

She did nothing wrong.  She has a large child, 3xs her size roaring at her.  It’s altogether unpredictable.  Fear may be the only appropriate reaction.

He knew what happened.  He tried to make it right; to share care and concern for this so badly needed / sought after relationship and for her “babies”.  But damage is done for this evening… as it has been in the past… as it has been since the day their interactions began.  He knew this effort was a failure and returned his attentions to the security and predictability of his own home… he returns to his iPad.

And that was enough for me.

It was at this moment, during this interaction that it hit me and I finally allowed the flood of acceptance in my feeling that I’ve tried to deny for so long; I want so much to be different for him.  I want him to be able to manage the relationships he so desperately desires.  I want him to make the friendships he seeks.  To play like every other child.  To learn new games, climb a tree, have a fair shake at learning what is needed to make it in life independently.  I want him to be able to dress himself, bathe himself, make his own meal, get a job, to hang out with a best friend (without supervision)… one day.

I want his relationships with his siblings to be free from the constant “lambs ear” of resentment, teasing, arguing, hitting and more.  Their relationships likely are damaged, my denial hopes beyond repair.  The nibbles of reality tell me something needs to change – fast.  The normal course of sibling issues are welcome; what he partakes in is beyond “normal”.  That’s not fair for him… or them.

Most of this is never going to happen.

Just as you love your child, I love my J.  My J *is* special.  He touches others.  He teaches.  He reshapes your perceptions; perceptions of the world, of what’s big and small, what’s important.  He refreshes your curiosity of all things we now take for granted.  He reinforces what is good in this quickly sinking world.

Many days – most day, I see him as an angel sent to our earth to touch someone who, influences another, who then changes what choices they make in their life.  I see him as a teacher, a guide, a leader of our lives.  I see his shine, the aura, the inspiration for more than I will ever know.

But, while I’m proud of his spirit for making the sacrifice he has, I am sad that the sacrifice was made.  Because I would like him to be able to connect with that little girl who cries, terrified, running from him in sheer horror for the big boy that comes at her roaring.

Because I would like his siblings to feel the love I know he has for them.  To have conversations, arguments, secrets, and laughter that lasts longer than the few seconds before someone gets hurt… or that is followed by an on-slot of teasing.

Because I would like him to have every opportunity any child has, all the potential any child has; to be able to make independent choices and navigate his own destiny.

Prayer Candles by Ronan C via FlickrSo while I will never subject him to faulty claims of magical healing – that’s not the type of ‘cure’ I desire – I do wish to help him always be the best he can be; and yet, this sadly doesn’t feel as though it will be enough…as for us, for J, for me, it just feels that the cards are stacked against him.

And he will never know these things.

And many other children will never know these things.

Without a cure…


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About the Author:

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate.

11 Comments

  1. jontybabe November 12, 2012 at 7:41 am - Reply

    Well, what can I say about your post but Fantastic! It is so refreshing to read something so honest. I feel exactly the same as you. Whilst I love my daughter with all my heart, if I had a cure for her autism I would take it! In a heartbeat! I think parents of special needs kids don’t like to admit they would change things. Well, I’m with you. I would! Thanks for sharing. x

  2. Leslie November 12, 2012 at 9:22 am - Reply

    Gina,
    Wow! What an honest and heartfelt post. I literally got tingles up my spine. My heart just reaches out to you and prays for you and your family.

  3. Melissa November 12, 2012 at 10:04 am - Reply

    FINALLY!! I feel like I’m the only person on the planet who feels this way. I’m going to take it a step further and also say that I feel like the parents who say they don’t want a cure for their children are acting selfishly. I know that is controversial but here’s why I feel this way. Some of these parents like that their children stay young mentally so that they will always feel needed. They like having a cuddly person who will always love them and not go through the teen angst then eventually grow up and out on their own.
    I also find it selfish because not wanting a cure or for them to be different is the same as wanting them to go through a life that is very difficult and isolating. Yes, it’s true that not being disabled does not guarantee an easy life but anyone has a better chance if they are physically and mentally unchallenged. I know for a fact my daughter would make friends (HAVE friends I think is even more fitting in this instance), play sports, play an instrument, be in spelling bees, etc. if her CP was not a factor in her life.
    Me wishing her to be cured is not me saying she isn’t good enough the way she is; it’s me wanting her to have every opportunity to succeed and not be locked into limitations because of her injuries.

  4. Donal November 12, 2012 at 10:29 am - Reply

    I guess the autistic need to be the dissenting voice here.

    I really feel for you and your struggles, remembering so much similar that happened in my own childhood, but your logic does not follow to one who has lived inside the child. Seems to me that autism is the symptom in this particular anecdote rather than the disease. Sure, cure CP. Most of my childhood friends died from it, it’s not a happy thing. SPD and epilepsy I strongly suspect will be tamed as we cure the bigger neurological disorders, let’s say we want a cure for that too just because epilepsy was so annoying to me when I was younger. But autism is a different sort of thing.
    I think you’re giving autism a bad rap for being the final catalyst of the described social bombshell rather than the core problem of his physical/mental/emotional/chronological age disparities. Most of the bad stuff in your article comes from the behaviors of others toward your child, including that of his siblings. Think on that for a bit before deciding who needs to be cured of something, please. Yes, your son has had some bad stuff go down caused by more than just his autism, but symptomatically to blame. I feel bad for your son, that’s a really confusing thing to have happen for an autie. Autism definitely makes life quirky for those who it makes prefer structure and stability, but it is important not to group it in with seriously debilitating or dangerous neurological (or behavioral) issues such as CP, ADHD, SPD and epilepsy the way they used to do with homosexuality. They didn’t want a cure either.

    • Editor
      Editor November 12, 2012 at 10:59 am - Reply

      Thank you Donal!

      I would never want to “cure” homosexuality. I see how you get this connected, but that’s not what I’m saying. In the same light, your wonderful dissent has shown exactly what I mean…

      You are able to write this incredible dissent. You are able to express yourself in the written word. My son is not. My son will likely not ever be able to write more than a paragraph, when he’s 50, if he’s lucky. I can’t imagine that he would prefer to be unable to communicate, think clearly or concisely or interact with another in a way that grows. A conversation that stays on topic for more than 10 seconds is a miracle.

      What I mean is, there’s different levels of autism. There are varying severities that make it so that someone like yourself who would voice the beauty that can also be found in autism and would NOT like a cure for autism can say as such. The child who finds daily distraction in feces is another level… I don’t believe that child would make that his / her preference.

      We each speak from our experiences. If my son were showing any signs of being able to do what you have just done, I likely would not have included autism in this post.

      • Donal November 12, 2012 at 11:48 am - Reply

        Daily distraction in feces… That was a hard one to overcome, potty training took even longer. But I did it and I’m a better and more disciplined person for having done it.

        I’m just saying don’t blame autism for deeper issues like you have in the article, it is not the worst of your troubles by far and in many ways is made worse by needing to treat the more serious issues ahead of it.
        Autism is like being tone deaf in a society which communicates by music, or dyslexic while living in a library (my childhood in a nutshell right there). It is being an amazing person with so much to share and not having an outlet for it. Don’t cure autism, just help autistics find the right outlet and then let them shine.

        • Editor
          Editor November 12, 2012 at 12:09 pm - Reply

          Donal,

          You’re inspiring.

          You *have* overcome a great deal and have given me a lot to think about. I’m certain I’ll return to your comments and re-read them for some time to come.

          Thank you.

        • Daria @ Mom in Management November 12, 2012 at 1:19 pm - Reply

          Donal – I love your perspective. Your words of “like a dyslexic living in a library” and “tone deaf in a society that communicates by music” are beautiful. And for me, someone without personal experience with autism, helps me more clearly understand.

          My first thought when I read those lines was how clearly they helped me visualize what it’s like to have autism. At the same time, it paints a lonely picture to me. To me. I understand that’s just my feeling/projection.

          My feeling isn’t constrained to just special needs – it’s similar to the loneliness I would think the artistic child in a family of athletes feels or the brainy child in a family of extroverts. Obviously different levels of exclusion may be involved, but that’s what I feel when I think of these – different, lonely, unable to connect at the base level the others enjoy.

          As someone that’s always felt a bit “out of step” with those around me I wouldn’t wish that on my child. I want them to have the best social skills, the greatest sense of humor, the talent of turning bullies into friends.

          Unfortunately I see in one of my children a sensitivity that causes him to take things very personally, to shut down when confronted with teasing from peers, to withdraw and be sad. I WISH he could receive things differently – have that gregarious personality that makes a joke out of insults and lets things roll off his back like rainwater. But he may not then have the empathy he shows toward those around him either. If he were able to discount the teasing, then maybe he wouldn’t recognize when someone needed a hug. I don’t know.

          If I were presented with a “cure” for his sensitivity – would I take it? I’d have to think pretty hard about how much of this is my own baggage that I’ve projected onto him and how much of it is something that will affect his happiness. Because for me, that’s what it boils down to – can my son reach his full potential for happiness? If not, then I think I’d want a cure.

          It is really difficult to make these decisions for our children, because as you point out, we are not the ones living their lives. But as parents it is our responsibility and obligation to make the choices we believe are best for them – and those choices are of course influenced by what we have experienced in our own lives. We won’t always be right – but we have to keep moving forward the best we know how and I think it’s natural to want our children to have every advantage possible.

          Beautiful post by Gina and wonderful reply Donal. Thank you so much for responding!!

  5. autistic mom November 12, 2012 at 6:36 pm - Reply

    Being an autistic mom of an autistic child, I view things differently. I would love a cure for me, something that allows me to make and keep friends, something that keeps my panic at bay when I have to do social interactions. I am sorry but I am high functioning and so is my son, but our quality of life would be so much better without autism. I am in my late 30’s and have lived a very lonely unfullfilling life do to this disease! I love my son and where I wouldn’t change him, I would love to increase his quality of life. I would like him to be the child he was suppose to be…not the one the disease created!

  6. Mary Tormey December 5, 2012 at 2:17 pm - Reply

    I think this is really a communications issue. What exactly dose the word cure mean? More importantly when you pay someone to look for a cure what do you actually get? In 2002, 4 years before Risperdal was approved for children J&J was using Cure Autism Now and Joseph Beidermen of Harvard to market Risperdal as a cure. Doctors where paid huge amounts of money to cover up the obvious problems with the drug, including the fact that it causes Autistic like symptoms. Now they have joined with Autism $peaks to cure Autistic mice. Autism is not cancer and mice are not people. Demand better when you ask for a cure, if parents pay for research they should be allowed to benefit without having J&J price gouge them on the next drug.

  7. Robin November 8, 2014 at 7:51 pm - Reply

    I know this is an old post but it came to my attention at a good time. We finally have my son on a good (meaning adequate, not perfect) combination of medications and supplements and dietary restrictions. I mentioned to an acquaintance something about the prescription supplement he’s on (we’ve had to titrate it very carefully because a whiff makes a positive difference everyone notices and a hint more turns him into a screaming, destructive, compulsive bundle of misery) and she said, “Well at least it’s just a supplement and you aren’t drugging him up with Adderall and Prozac.”

    Um, well, to be totally correct we’re using Adderall and Zoloft. And we had all sorts of fears about “drugging him up” before we started medication. But it turns out that I’m seeing more of his personality peeking out as we get his conditions controlled. It’s the person I thought I could see but wasn’t quite sure. He’s so much happier and able to enjoy life.

    I would not hesitate for a moment to cure his OCD in particular. It helps that he himself has sobbed: “Just make it go away, Mama! Make that stupid OCD trickster go away, I’m so tired.” A close family member has epilepsy and OCD and I know for a fact she would be happy to never deal with them again.

    At the same time, I would never “give back” the experience of my strokes. So much good has come of them. But I would gladly leave behind the residual symptoms and just keep the lessons!

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