“My Story…” Monday: A – Hyperlexia

(You can catch up on A’s story right here: The Pregnancy, The Birth, The Infancy, The Quiet Toddler, Advocating, What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks)

 

 

It was an absolute delight to watch our sweet boy’s vocabulary expand and grow.  I need to tell you that it most certainly didn’t happen overnight.  As the days passed, A. struggled– letter-by-letter– to sound out new words that had, no doubt, been trapped in his brain this entire time.  I will never forget his tentative smile as he worked his way through the word C-U-P (“cu-uh-puh”) in our Indiana kitchen.  I had endless patience for the amount of time it would take him to choke it out.  My heart was so happy to hear him talk.  It was all I had prayed for for so very long!

 

Right around Thanksgiving, I was stretched out on A’s bed beside him one evening, murmuring to him as he started to drift into a sleepy haze.  He turned to me, heavy-lidded blue eyes deep, and said, “I  l-uh-vuh  Ma  Ma.”  I sobbed.  Almost three whole years to hear those words and they were sweeter than I had even imagined.  I showered him with kisses, then called my own mama to share the happy news.

 

 

Over the next month, A. learned many, many more words.  He still did not speak nearly as clearly or fluently as a typical three-year old.  His speech was still significantly delayed.  It was fascinating to watch him learn more and more words by seeing them first on paper.  It seemed like such a round-about way of learning but, well, that was how his mind worked.  What made it even more intriguing was the fact that he rarely, if ever, sounded a word out incorrectly.  Take the word “elephant”, for example.  Since he was sounding out letters, one by one, we would have assumed he would say the “p” and “h” sounds individually.  He did not.  He seemed to have an inherent understanding of how letter sounds combined and worked.

 

I’ve mentioned before that my sister is a speech and language pathologist and she has oodles of experience with the preschool population.  During one of our chats, she mentioned a condition known as “hyperlexia” and she wondered if we knew anything about it.  We did not, but you can bet I started researching it pretty much the minute I hung up the phone.

 

I was shocked!  And when I showed my husband, he was too.  This– finally, THIS– seemed like a spot-on description of our little guy!  If you haven’t read the link yet, I encourage you to glance over it very quickly.  I chose that one because it is a very, very brief explanation of hyperlexia.  We were so very, very excited to perhaps, after all this, have an answer.

 

We called the autism department at the hospital (where he had received his PDD-NOS diagnosis) and asked for a referral to a doctor who could evaluate A. to see if  “hyperlexia” might be an appropriate diagnosis– mostly, we were seeking a good diagnosis on paper just so we could ensure he received the best and most accurate therapy/treatment when the public school system got involved on his 3rd birthday.  About a week later, I got a phone call telling me we had an appointment with a neurologist in Indianapolis.  Excellent.  My husband took the day off from work and we eagerly awaited hearing his thoughts.

 

The doctor had never heard of hyperlexia.

 

He also didn’t have any of A’s file since the autism department apparently didn’t see any need to provide him with all the background information on our child.

 

We were crushed.  We had been so eager, so optimistic, so ready to finally, finally solve a little part of this puzzle.  It wasn’t going to happen in that office.  I want to be sure to point out that Dr. Singh was wonderful, helpful, and tried so hard to help us.  He did his best to find information that might be helpful to us but, in the end, he wasn’t qualified to evaluate A. for hyperlexia.

 

He also wasn’t sure A. belonged on the autism spectrum.  Very, very careful with his words, he told us:

 

“I don’t want to question the diagnosis because I know they are professionals and I’m sure they’re basing their conclusion on the data they collected.  The thing about autism is… well, you have some children and it’s a very clear diagnosis.  It’s textbook.  You know that it fits.  And then there are some, like A. here, where clearly there’s something going on.  His development is obviously not typical.  But sometimes we just don’t have a real diagnosis for ‘not typical’.  Sometimes, there’s just NOT a label.  Sometimes… we just don’t know.”

 

I have always respected Dr. Singh for that.  While we didn’t get what we were looking for, we were impressed with his humility and willingness to acknowledge that doctors don’t always know everything.  It was refreshing.

 

 

We left with our little boy… our super late talker and precocious little word decoder.  We headed back to our tiny town and got ready to prepare for the upcoming school meeting.  A. was turning three and the public school was getting involved.

 

It was time to meet that team and form a plan…

Facebook Twitter Stumbleupon Email Tumblr

4 comments to “My Story…” Monday: A – Hyperlexia

  • It’s interesting to see how much your son’s low vocabulary made you really appreciate each word he spoke. I know I was very excited when my daughter started to talk but as the chatter, whining, and gibbering increased in volume and length, I started getting annoyed. I need to realize how blessed we have it to be assured that our daughter is on the right track and communicating with us. Not to say that your son wasn’t, it just wasn’t the classic, noticeable way – KWIM?

    • I definitely know what you mean, Miranda. My husband and I laugh- frequently- at the volume coming from the back of our minivan now that there are three chattering children back there. It really wasn’t that long ago that there were two very quiet ones filling my backseat… I think I do have a real appreciation for that noise just because of what we went through! (Which is not to say that it’s not sometimes annoying. ;))

  • YAY for your sister! (I haven’t heard of it either.)

  • [...] He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks, Hyperlexia, Your Baby Can Read, Another Evaluation, A New Kind of Special Need, Linear Algebra)     A. [...]

Leave a Reply

  

  

  

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Archives