Early Ignorance

My son was diagnosed with autism in April of 2010.  He was almost four years old when we received this news.  It was not the shocking blow that I’ve heard other parents describe.  For me, that blow came at Christmas 2009.

To me, my son was always a “sensitive” child.  I never baby sat and, literally, had no experience with children.  I knew no one with autism.  I knew no one with children with autism.  I was, truly, the epitome of autism ignorance.

For the first three (nearly four) years of my son’s life, I had rearranged my own.  Previously, a trial lawyer working 45-60 hours a week, I cut back my hours to 9-12 hours a week.  I thought this was “normal” for new mothers.

Around my son 24/7, I learned not to say certain words to avoid a very nasty reaction. This was okay.  At least he was communicating his dislikes, I reasoned.  My son was obsessed with space.  I bought every book on the planets.  I ritualistically pointed to Mercury, Venus, Earth…. at my son’s urging so he could recite them.   I cringed when newer books left out Pluto because it was part of our “routine”.  That was how we “played”.

I could not make sounds of animals, horns, sirens or count numbers.  Pretend play was non-existent.  I was required to keep both lights in our bedroom, either “on” together or “off” together.  I rode escalators over and over and over again.  I rode elevators four to six times in a row, apologizing to those who got in my son’s way when he insisted on pushing the buttons.  All the while, I never thought these behaviors were indicative of something.  Something big, something important.

My son spoke, but not in sentences.  He repeated lines from TV.  I counted how many words were in his vocabulary, as requested by my pediatrician.  It was within the low end range.  I introduced new words.  I fudged the numbers  to fall within “normal.”  I was fooling myself.  Clueless.

About two weeks before Christmas 2009, my son had an ear infection.  We went to the doctor.  Oftentimes, our regular pediatrician would not be available.  We saw many different doctors.  It was never pleasant.  There were always tears and loud crying.  But this was not Disneyland.  This was the doctor’s office.  That was normal?

On this occasion, my son was particularly fussy.  As usual, I intervened. “Oh, Dr. B, please don’t use the word ‘moo’, or he will get upset,” I said, while she tried to scope his ear.   Too late.  He was upset.  He started to spell.

One of the paths to a “meltdown” for us was always to spell.  “T-R-U-C-K!!” His inflection and volume would rise.  He was spelling by the time he was 2.  Now, here in Dr. B’s office,  spelling escalated to crying, screaming and a full-fledged meltdown.

That’s when Dr. B sat me down and suggested an evaluation.  She did it as gently and kindly as she could.  She told me that UC Davis Mind Institute, nearby, was one of the best facilities in the country.  She would make a recommendation.  She kept using the words “quirky behavior”.  She tried to soothe me.  She told me that his autism was “mild” and “borderline”.  She told me about other children with autism and how they were in “regular schools”.

But by this time, my head was reeling.  I was panicked.  I only half heard her words.  Something was “wrong” with my precious, beautiful baby boy?  My joy, my life.  How dare she suggest my son might not attend “regular” school?!  And, profoundly, to the forefront, the question, what is autism?

At the time, I had heard that children could “get autism” from vaccinations.  I heard that Jenny McCarthy had “cured” her son of autism by some diet.  I knew nothing.   I had absorbed only bits of myths.  I was mad!  At Dr. B, at my husband for not being there when I was given this news, mad at the world.  The reality was I was mad at my ignorance.

After Christmas, I filled out paperwork for an evaluation with UC Davis.  I mailed it in. Every day, I was researching, looking for treatments and answers.  I found private speech therapy for autistic children nearby.  I obtained referrals.  First, a hearing evaluation.  Then speech.

Looking back now, if I’d only understood what autism was from the very beginning, maybe I could have started intervention earlier.  I wish I had not been so profoundly ignorant.  I wish I had known more.  I still have so much to learn, to accept, and to understand.

Now, my son has therapy five days a week. He has made significant progress.  Meltdowns are few and far between and almost (knock on wood) a distant memory.  He is phenomenally smart but we have our daily struggles.  I am grateful that I was blessed with all the right pieces falling into place.

A lot of parents who blog and tweet make a point of telling the world that autism does not have their child- their child has autism.  It’s almost as if, in using the word autism, in defining our children, we envelope them with a blanket of fog to others.  Instead of recognizing our children as individuals, our kids are cast into a stereotypical bin and avoided by those too ignorant to understand.

The word “autism” in my limited experience, remains a mystery to the general public.  Unless your life has been affected, you simply don’t know.  There is nothing to motivate a person to know.

That’s where each of us who do know come in.  Each of our voices is a weapon against ignorance.  With each blog, each story, we announce to the world that our children are diverse, varied, multifaceted, individuals with interests, talents, and personalities just like any person.

I want everyone to know, to understand, to recognize.  Because, ironically, it is the power of communication – – the very power our children lack – -that can, and will, save them in the end.  Save them from prejudice, bullying, discrimination and isolation.  Knowledge is power and communication is the key.

Welcome to my blog…

As a new blogger, my intent is to post often.  I don’t know how this will work out.  My eyes have been opened to this special community of parents of autistic children, adults with autism, and other special needs that are an incredible group of supportive people.  I hope to be accepted by each of you.  The details of each of our stories are clearly unique but together, we make a difference.  Thanks for dropping by.

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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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23 Responses to Early Ignorance

  1. Meg says:

    What a grand huge fat loving message to read. So intelligent and so personal. I love the fact that you were so innocent. I love the fact that you admit all the love your child brings you. This will be a blog that grows…autism has increased. Perhaps the world needs more and more autistic kids. Who knows. I’m just very pleased to be the first to be able to say “Thumbs up here.” Hoping the best to you and looking forward to more information. My take on it is that autistic kids are here to teach us something – innocence – focus – acceptance. Can’t wait to figure it all out. love, Meg

    • solodialogue says:

      Meg, I love that you are here for me! There is a great community of parents I have found through Twitter whose posts are so over my head right now. I’m just a new recruit. I have not waged the battles many mothers & dads out there have. I’m learning and sharing each day!! Thank you so much for your warm response!! It means a lot to me.

  2. Birgitta says:

    Nu skriver jag på svenska,hoppas att datorn översätter riktigt. Jennys son Marcus fick en tidig diagnos redan i 1-2årsåldern.Jag har tyvärr inte träffat honom så ofta eftersom vi bor så långt ifrån varandra.Men jag tror att Jenny skulle kunna berätta,hon och hennes man jobbar väldigt mycket med Marcus.Du skriver så fint i din blog,visserligen översätter datorn lite konstigt ibland men det mesta gick bra. Jenny finns på min vänlista, så du kan kontakta henne. Pratade med min bror för en stund sen och berättade för honom om din son.

    • solodialogue says:

      JAG kunde inte förstå all av din kommentera. JAG auktoriserat inte få så pass Marschen var diagnos på ålder 1-2. Tay var senare emedan han var härdar till upptäcka. Tack själv för läsande och kommenterat. Tay har har en masse terapien och den har gjord en stor skillnad. Behaga hålla läsande. Där de/vi/du/ni är mer rolig historia till komme!

  3. Erika says:

    Reading this post made me feel and think about many, many things, including how I always loved proof-reading your work when I was your loyal secretary. Keep writing, and especially keep writing about your awesome kid. It’s a world that is totally unknown to me. Love to you.

    • solodialogue says:

      Thanks, Miss E! The idea is to open my world to others who have no reason to know. It would be great if there were public service announcements to bombard the public so others could understand what the world of an autistic child is like. But there aren’t. So, many, many parents blog about their autistic children in this forum. More, funny stuff to come. Please keep reading and commenting!! I truly appreciate it. Love right back to ya! And I -ahem- miss those proof-reading days as well..;)

  4. Caryn says:

    Truly, one of the most honest, brass tacks “intro to autism” stories I have ever read. I LOvE it! This blog is gonna be amazing.

    • solodialogue says:

      I love you Caryn!! Thanks for the feedback! I’ve been so nervous all day. I have read so many of your posts and you are always so awesome and funny! I did not know if I was saying something that’s been oversaid in the community already. I said it from my heart. Funnier posts will come. Please keep reading!

  5. Casdok says:

    Heres to the power of communication.

    • solodialogue says:

      Jen, wouldn’t it be great if the message was in the old time public service announcements (maybe you’re too young to know what I’m talking about)- what happened to those? Anyway, we have to communicate however we can!! Thanks for the feedback!

  6. Lisa Ashmore says:

    Thank you for sharing an amazing story. I truly admire your patience and compassion.

  7. Welcome to the wonderful world of blogging. That was a beautiful first post.

  8. jonathon Ashmore says:

    You are truly gifted. The greatest gift you have been given is your son. Second is your ability to express your love of your son in such an articulate, beautiful, honest and heartfelt way. Lisa and I are honored to be your friends. Please keep writing. Your words will give comfort, inspire, and bring hope to all who read. I couldn’t help but notice that most, if not all who have responded are Moms. While most of the Dads out there may be hesitant to respond, I assure you that they are benefiting tremendously from your insight and appreciate your story.

    • solodialogue says:

      Thank you, Jonathon! I don’t think I’m worthy of such high review. As a mama, I’m just doing what I can for the boy that I love. Just like any parent. Only difference is that I am telling my story in written form. I will be writing more. Next post will come out on Monday! Please keep reading!

  9. Lynn says:

    Welcome to the blogosphere! You have a great story to share…I think that your stories of how you were in denial and how you rationalized the little “quirks” is a great service to others out there who might be doing the same. It’s a really tough reality to face, but it has to be done so that we can give our kiddos all of the support that they need and deserve. Great post!

    • solodialogue says:

      Thanks, Lynn! Coming from you, this comment means a lot to me! I was scared to post how little I knew. I felt like I was in a fog. I think I’m still struggling with the depth of it every day. Thank goodness, my son is getting services that he needs. I hope as time passes we can all get the word out so the signs are common knowledge and intervention can happen as early as possible.

  10. Jennifer says:

    Our sons were diagnosed around the same time (us: 2/2010) – our little guy was diagnosed with PDD-NOS and is now 4. I admire you for putting it out there and I’m anxious to follow your progress. Us mamas have to stick together.

  11. Stefano says:

    My son was diagnosed with autism in April of 2010 and is now 4.
    I live in Rome (Italy). I follow with interest. Welcome to the blogosphere.

  12. Wow, this is an incredible first post.

    We received the news that our son was “behind” at a regular checkup with the pediatrician too. I was mad and upset at first, but now realize that autism isn’t what I thought it was (thank goodness!)

    Looking forward to following your blog! Thanks for stopping by mine too.

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