Autism and Happily Ever After – in Two Parts… Part 1

Once upon a time, there was a rather old princess who, despite repeated attempts to become with child, was left without.  She wanted, more than anything in the world, to have a baby.  She hoped and she cried.  She wondered if she was meant to be without the laughter of a tiny little one running around the kingdom.  Then, one day, with much fanfare, she was blessed with the news of a child on the way.

The road was treacherous, fraught with danger and a scary illness called preeclampsia.  The old princess did everything in her power to protect the tiny baby.  She ate right.  She rested.  She had regular, prenatal care visits.  She took her vitamins.  She read and sang to the little one.

The old princess became very, very ill.  She and the baby were in danger.  At the last minute, a fairy doctor came in and brought the baby into the world crying and screaming by a magic c-section.

There was no sleep in the castle.  Day and night (and every two hours through the night) there was screaming and crying from the little royal.  The old princess and the duke (her husband) were exhausted and confused.  Why was the little prince so beastly?  Why was he so beautiful and so upset?  Was his tummy hurting?  Was he hungry?  Did he have problems breathing?  Pain?  What could it be?

Then, when the prince was nearly four years old, the faithful pediatrician finally said the feared words to the old princess – “I want to test him for autism.”  What?  The fairy tale life she had envisioned shattered in that moment.

Slowly, the old girl, picked up the pieces.  She swept many of them aside.  She called many experts.  First there was the expert from the Regional Center who coordinated an official diagnosis from the finest establishment known as UC Davis MIND Institute.  Autism?  Confirmed.

Once a confirmed diagnosis was achieved, the experts, satisified with their work, simply backed away.  They left the old princess and her child deeply inside the dark, dense and thickly wooded forest with no provisions, save access to the internet.  The old princess Googled and Mapquest’ed and took path after path to find a way out into the light.

The experts and doctors had left her with only two magic words, “speech therapy”.  The rang hollow in her ears.  He had no difficulty with articulation.  He could speak.  Whatever were they talking about?  Where would she find someone trustworthy of the little prince?

She traveled many worn dirt pathways and found a kind little couple who took in the princess and the boy and examined him.  The woman was a speech therapist.  She was surprised at the level of difficulty of testing the little boy, not yet four years could surpass.  She took out testing for ages 5, 6, and 7.  The boy continued to pass all the tests.  At it’s completion, the woman looked to the old princess and said, “You are lucky.”  He will make much progress.  You will see.

The woman helped the boy.  She placed him with other boys with similar disabilities in a class once a week.  As the old princess made her way through the thick woods to her place, the speech therapist left the old princess with other princesses who bestowed their experience upon her and gave her more magic words, “ABA” means “Applied Behavioral Analysis” and it will make the little prince strong.

The old princess went deep into the woods with the small boy looking for the elusive ABA.  She met many odd characters along the way.  Eventually, through many adventures with Google, she found a wise old man who had studied and become an expert in ABA.  He too, tested the boy and found him clever and sneaky.  He said the boy would be a challenge but he had promise and he began long and devoted work with the boy.

The boy grew and prospered under the wise old man who had many working under him.  The boy learned new words.  The boy learned to use words and respond to instruction.  The boy learned to use the toilet.  The boy learned discipline and it was good.

Interspersed in the speech, she found two additional magic words called “occupational therapy” or OT.  The OT was used to help the boy learn where his body was in space.  It helped to regulate his constant need for movement and to use the large muscles in his body.  It helped him to find focus, strength and concentration.

But the old princess had become spoiled by the ABA, OT and the speech.  She became greedy, dissatisfied – everything looked like a frog to her.  She sought more and better treatment for the boy who was growing and learning by leaps and bounds.  She had begun writing.

She wrote about alternative treatments like oxygen treatment tent, about vitamins and transcranial magnetic stimulation.  Others with children with autism listened to the stories of the old princess, some with interest, others with skepticism and others with distrust and warning.

Saving herself from becoming lost deep in the forest once again, the old princess went to see the trusted pediatrician again.  The trusted pediatrician who was oblivious to the old princess’ plight in delving repeatedly into the dark and twisted woods, told the old princess of a sage, one wise with years and scientific understanding.  She said the path to the wise scientist would be a long, long journey of many months of waiting.  The old princess put all the alternatives on hold and for the prince… she waited.  And waited.  Until the day came that she traveled on a long and winding road to the wise old sage who was not deep in the woods but high on the hill.

(To be continued…)

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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19 Responses to Autism and Happily Ever After – in Two Parts… Part 1

  1. C... says:

    Your story sounds familiar 🙂 … it does feel like that much like that… I feel like half the time I am locked in a tower awaiting my fate.

  2. J says:

    The tale has been told here as well, except our little prince and the wise old man’s paths cross nary a day since our IEP. Don’t think he would even recognize him in public. Relying on the troops only..awaiting our happy ending:)

  3. Kelly Hafer says:

    You have no idea how appropriate this post is today. First, off, I have a meeting with some local newspaper publishers to pitch an idea. More on that later. Keep your fingers crossed. So, your post made me cry before I could even finish printing up my presentation – what a heartfelt story. It could equally be my story. Except there are no f-bombs or typos. 🙂

    Second. YES. This is the problem. You get the diagnosis. In our case, we had to fight tooth and nail to get referrals to even be evaluated. But, you get the dx, and then you are left floundering. Lost at sea. So we Google. We buy out Barnes and Noble. We try things – and fail – and THEN we find the blogging community. Thank GOD for this community and all that we do to support and inspire each other. Point each other in the right direction. The more experienced moms (RHONDA – you are my hero!) guiding the newbies.

    The after-diagnosis process needs a major overhaul.

    • solodialogue says:

      Pitching an idea sounds so exciting!! Now, I’m hella curious, girl! Why do you leave us in suspense? Our community is solid and amazing. Yes, the Google and the dusty books… And – of course -Rhonda does rock, doesn’t she?

    • LOL… “no f-bombs or typos” 🙂

      You guys are BOTH nailing it here and I wanna put like, SIX exclamation points on Kelly’s comment:

      and THEN we find the blogging community. Thank GOD for this community and all that we do to support and inspire each other!!!!!!!!!!!!!!!!!!!!!!!

      Seriously. Thank GOD for all of you!

  4. Jackie says:

    After-diagnosis needs an overhaul even for the adults diagnosed too. 🙂

  5. Lizbeth says:

    Forget being an attorney, you should be a writer. Not that you aren’t already but you know what I’m saying. Well done and your story could be ours. This old lady had found peace and happiness but not without much angst and turmoil along the way.

  6. Rhonda Logan says:

    awww Kelly!! THANKS!! ❤

    Our Dr's weren't as nice :/ We got the "he'll never talk, probably won't be able to take care of himself, will probably be in diapers for the rest of his life. Just take him home, and love him." Yeah.. THAT was from the Director of Pediatric Neurology. Scary huh? He's nothing like that. NOTHING! If I'm ever in Southern CA again, I will most certainly be looking that Doc up. I'd like him to MEET Tommy.. and give ME the apology i believe I deserve. He created TERROR inside me.

    • Teresa says:

      Gosh, I wonder if you ran into our doctor… Best advice for parents is to remember that doctors are not God. They know a lot but they don’t know all. Moms know their child better.
      To other parents, take the words of your doctors, therapists, teachers, etc. Then start researching yourself. The Internet is a terrific tool. You have your child’s best interest at heart. You will be the one willing to work through tantrums and know when your child can do a task or when he is “faking it”. You are your child’s best advocate.

      • solodialogue says:

        Wouldn’t it be a wonderful world if the doctor would give us the appropriate referrals at the earliest possible time and if we moms knew how to sort the real from the fantasy?

    • solodialogue says:

      Gawd – that is just awful Rhonda! Our “sage” is also a Director of Pediatric Neurology – I sure hope we’re talking about two different guys – I’m pretty sure we are – We are in Northern California and my director has been amazing. I can’t image someone with such a title telling any mother such nonsense!! Girl, send that asshat an email and demand that apology!! You are one of the strongest mamas I follow! Obviously – that terror is gone and you and Tommy have done a great job together! 🙂

  7. After our diagnosis, the doctors recommended we read books about autism and gave us the websites of a few autism organizations. Nothing a really basic internet search wouldn’t have turned up. It makes me so angry to think about.

    So yeah, thank god for the blogging community!!

    @ Rhonda, wow, that’s horrible. I’m so glad you could do that and I hope one day you do cross paths with the doctor so he can see how wrong he was. I had some people say similar type of stuff “he’ll never…” and it’s just infuriating to hear!

  8. I am LOVING this story, Karen — you seriously need to save it under your tabs — like up by that “Home” and “About” link area. I can’t wait to see what you found out!

  9. ElizOF says:

    I love, love love this… So rich and funny and bittersweet. It has been a journey and you have been a champion all the way. Kudos! 🙂

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