Autism: The Only Cure I Want

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I am sure this will not be politically correct.

Lately it seems I often am not.   I simply speak openly and don’t measure my words or revise very diligently.  Honestly, there are moments when I hear the autism elite speaking and I am not even quite sure what they are talking about.  Those upper realms where the roar from fighting is so loud that children are eclipsed, is not a place I travel to.  I am the grassroots.  I am in the trenches. I am quietly fighting the good fight with my boy…one teacher at a time, one classroom at a time, one therapist at a time, one principal at a time, one superintendent at a time, one director of special services at a time, one school district at a time, one IEP meeting at a time, and one friend at a time.  There are no armies behind me, no troops rallying beside me.

It’s just me and my boy.

My boy is thirteen.  Many of you already know that but I repeat this for the newcomers.  They need to know I am not talking about a five year old because when we were five, I could never have imagined we’d be in middle school, on the honor roll and in regular education full time.  I could not imagine, in the days of two hour scream fests when he was slinging snot on his sweet kindergarten teacher, that we would go anywhere that was positive or good.  He is thirteen now and we have been in this fight with autism for eleven years.

It’s just me and my boy…and we’re alone but we are winning.

In a crazy way, I am thankful we have remained independent.  I am thankful we have not traveled the main roads or fallen into the popular trends.  Mostly, I am thankful my son was diagnosed back in the later stages of the darker ages of autism.  I am thankful we no longer live in the pre 70’s days of institutionalizing kiddos or the 80’s of pretty much still riding the fence and using the let’s-put-our-heads-in-the-sand philosophy.  I worked in the group homes in 80’s and I know what autism and institutions felt like and I am thankful my boy was not born in those days.  In the day of my son’s diagnosis, 2001, it was the dawning of awareness and the beginning of brighter days.  The dawn was thankfully breaking but, even still, not many knew enough to be helpful.

And, NO, that was not a typo.  I AM thankful my boy was diagnosed in those early days of autism awareness when nothing was really in stone.  It was perhaps the wild west days of autism awareness when risks could still be taken.  When envelopes could be pushed.  When teachers and parents were willing to step up and say no to the recommendations of school corporations and the corporations were still fumbling enough so they turned a blind eye to the cowboys that we were.  It was a time when seasoned teachers and principals named Kim and Cora were still in power and were skilled enough to say we’ll just go out on that  limb and we’ll give the different approach a try.  So many doctors and educators today sit in boxes.  They sit in books, they think they understand a six letter word and don’t even yet realize the striations involved, the complexities, or the layers of texture and skill behind that six letter word that they are not yet privy to after graduating with their teacher’s degree.  So many have not yet discovered that autism’s complexities and brilliance cannot be captured in a textbook and are more than words on a page.  Autism has to be lived to be understood.

I am thankful we had a maverick of a teacher named Kim who said yes and stepped up at a time when the rest of the world walked away and said what we wanted was impossible.   I am thankful we could plan his education without putting too much weight on dismal reports.  I am thankful we had a principal with enough seasoning to say, I’m here, I will help, I’m not sure exactly how this goes but let’s see how this boy can grow if we all stand together.  I am thankful that I did not immerse myself into the reports filled with “can’t” that relegated my boy to a life of nothing much.  I am thankful that somewhere in my softness a backbone grew strong and I learned to say no and to walk away from the ones who had formerly been my guideposts.  I am thankful for a family who saw the same glimpse of brilliance I saw, the sparkle that helped us see the light within the boy who was lost momentarily inside himself.

I don’t believe in curing autism.  I don’t believe that a refrigerator mom, or a number on a scale, or the flu, or a food, or an aging parent are the causes for autism.  I think there are a lot of different kinds of autism and I believe the causes are both genetic and environmental and as varied as the children who fill the spectrum. I don’t think there is a magic bullet or vaccine that will make it go away.  I think healthy eating will do us all a lot of good but I don’t expect any diet will make his quirks fall away nor do I want them to.  His quirks are home to me because I don’t believe he’s sick or wrong or broken.

I believe my boy is this glimpse of magic that has great strength and still holds marked weaknesses.  I believe he is in my life so that I can help him grow those weaknesses into strengths.  I believe I am the lucky one.  I believe, no matter how politically incorrect it may or may not be, that God gave him to me on purpose.  I believe God blessed me with this gift.  Yes, indeed, I do and I view my boy as a gift and a blessing every single day.

Yeah, I guess you can say autism is hard but that’s relative too, right?

  • I mean, honestly, being a young girl in India or Pakistan or Afghanistan or a lot of other places is hard.
  • Being a 17 year old boy sent to fight in the trenches of WWI was hard.
  • Landing on the beaches of Normandy in WWII was hard.
  • Being a Jew in the Holocaust was hard.
  • Being a parent to a child who has endured three rounds of chemo and is dying, well, that’s some hard stuff right there.
  • Watching your spouse die is hard.
  • Being a soldier and coming  home from Vietnam in the 60’s and 70’s was hard.

Yeah, autism is not always a cake walk but it’s not that hard.  Not really if you look at the big picture.  Pity is a pit that is only as deep as you let it be and I try not to let myself step too close to it.  It’s a slippery slope, you know?  There are lots of harder things to deal with than autism and I wouldn’t trade autism for any of them.  Yeah, there’s rough moments but, in the end, when the sparkles rise up, he’s worth it.  Autism is worth it.  Navigating the spectrum is worth it.

I don’t believe in magic pills or miracle cures.  I believe in hard work every day.  I don’t believe in breaks because now is the time to work for my boy and there will be plenty of time for rest when he’s older, when he doesn’t need me so much anymore.  I believe in magic children who have the ability to refocus our attention on the good stuff, the important stuff, the back to basics stuff.  I am better for having walked on this journey with him and I feel like I am the lucky one.  I certainly believe the autism community could come together better but that’s a whole other subject.  I don’t play in the circles with the autism elite.  I stay in the trenches with my boy and work in the here and now, every single day, because half way or half hearted is not good enough for me.

It’s just me and my boy and yet we’re enough.

I take my place with the other families who get that, who are on the battle lines, and we find our cure every day with each other…having faith, keeping the hope and sparkle alive and being fearless as we fiercely hold the brilliance of autism up to the medical and educational establishment in an effort to help them SEE our spectrum kiddos for the radiant children they are.  Don’t ever stop being that cowboy, that rebel that stands up.  Don’t ever stop being fearless and fighting the good fight for kiddos who can’t fight for themselves because, in the end, that is the only thing that really matters.  Because, truly, if we fail our children…nothing else matters.  And, on the day when the fight is done and our kiddos can stand up for themselves, that’s the day we will all take that tropical vacation.  On that day, we’ll sit peacefully in the sand and we will reflect on the goodness that comes from faith as we finally experience the decadence of watching our children from a distance as they live their lives.  That is the only cure I want.  I want to keep faith, hope and fearlessness alive in this battle against autism.  Sparkle On, my friends, and thank you for your camaraderie!

20 thoughts on “Autism: The Only Cure I Want

  1. I love you and wish that we were sisters. You inspire me. Thank you for writing this! As our 4 year old, non-verbal son is getting closer and closer to school age, I will be reading and re-reading your posts for encouragement, especially during those times where his dad and I will find ourselves face down in the trenches trying to get up, dust ourselves off and get back to fighting for our son’s life of independence.

    • Heather, that is the only reason I write. I wish I knew then what I know now. I wish I had fretted less and relaxed more. You will be great and you and your husband will work together to make beautiful things happen. You keep reading and I will keep writing <3! Oh..and you can be my sister because I never had one and always wanted one :).

  2. Another beautiful post. You speak from a heart that so many of us share. I wish for the same cure as you. Not for the Autism to “go away,” because what would my son look like then? Would he still be the same beautiful, creative, bright, silly, amazing boy? But for him to achieve all he can, be happy and live a life that HE finds fulfilling.

  3. Thank you for not editing or revising! You are on to something…My son is almost 18 and I am stunned at the fact that he has made his accomplishments in spite of those who were considered experts. He is on his way to college, two hours away, so keep up the good work mama!
    ~Melissa~

    • Melissa…that is AMAZING and perhaps the best story I have heard in a long time. I want to be in your shoes in a few years!! We have a university in town and I would be thrilled if he would go there :). It is so true about the so called “experts” and that is why I caution younger parents to relax, be patient, work hard and just let the kiddos become who they are. Every time I look back I think, my goodness, no one thought we’d ever be standing here but…look at us! Thank you SO MUCH. Congrats to you and your son for some truly great sparkle!!

  4. YOU ARE A BLESSING TO SO MANY LIVING WITH AUTISM…YOUR FAITH HAS CARRIED YOU AND THE LOVE OF YOUR CHILD…GOD BLESS YOU….YOU……. YOURSELF…ARE VERY SPECIAL….

  5. Hot damn!! I’ve only just discovered you, this is the first post I’ve read, and I can’t believe there is someone out there on nearly the exact same page that I’m on!!! I got goosebumps when I saw the date you posted, because just a day later, I posted a blog about some of the same thoughts. What a relief!! I’d love for you to come over and give mine a read, if you find the time. (“It never rains in California” at: dinee-d.blogspot.com) ❤

  6. This was beautifully written, and I agree with some of your sentiments, but for my personal situation I could not disagree more. How I wish autism gave me a quirky, bright, and silly boy. Instead it left me with a boy, who is now a man, and is tormented on a daily basis by his inability to communicate, participate in life, be productive, or have friends and a social life. I’ve never had a conversation with my son and he is 22 yrs. old. I just want people to know that Autism and Aspergers are two very different disorders, despite the fact that they are often lumped together. Cures? I would cut off both arms and legs for a cure. Autism robbed my son of his life.

  7. Caryn…I do understand how you feel and I know there are different forms of autism despite us all being lumped together on the spectrum. One of my dearest friends’ daughters, just a day difference in age from my boy, has a completely different experience. To me it feels as though there are in fact different autisms. If I were in your shoes or hers, I am sure I would feel differently. This is simply my boy’s autism and how I feel. I never claim to speak for anyone else. I just tire of the miracle cures people speak of. I always promote useful insight to the actual genetic or environmental triggers that may play a part in autism. Kudos to you, girlie.

  8. Can I get an Amen?! I am another mom who has no desire to ‘fix’ my autistic son. I just want him to have the tools to decode the world he lives in, which he is getting. When I allow myself into the land of Ifonly my regrets are that he wasn’t diagnosed sooner (he was 12), and that I couldn’t smooth out the rough spots a little better. But when my son tells me he wouldn’t change a thing, that he likes who he is and wouldn’t be that person if his life was different, well I guess everything is going according to plan then.

  9. I loved reading every word of this post! My son is 5 years old, sparkly and gorgeous, and about to start school in 10 days. I am excited and anxious for him but mostly I am looking forward to stepping into this new world and beginning the process of helping him function and learn in a mainstream environment with me advocating for him at every opportunity. I recently gave up work to ensure that my energy and time are focused solely on my boy during this time. After a few months once I am sure he is settled I will return to some part time work during school hours and am enrolling to study special ed part time. I’m going to be one of those fringe, maverick special ed teachers! Thanks for your inspiring words!

  10. Thank you for your wonderful posts. My son is 7 and we have days I wanna cry and others I can’t believe how far we have come. I love your posts, they are great encouragement for all of us whom are still growing in this. Thanks again :).

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