Parent Perspective: The Dyslexia Diagnosis

Something's Off

     As mentioned in this post, I knew something was off with N from the time he was very little.  His speech was delayed and he didn't walk until he was 2 years old.  When N was 3, my neighbors and I organized a preschool co-op and I was surprised to see how much N struggled to learn new things (especially letter recognition).  What was going on?  N was exposed to lots of literature, education, museums, etc.  I had done everything I had done with my older two boys, and yet N was not progressing as his big brothers had.  I knew there was something wrong...this was more than just being a "late bloomer."

Auditory Processing Disorder?

One possibility I explored was auditory processing disorder or some other type of hearing disability.  N was very slow to react to auditory sounds...I often found myself quietly calling his name to see if he could hear me.  When he was 3, we took him to an audiologist where he actually failed the hearing test they gave him.  The doctor determined that it was due to fluid build up and we had tubes put in his ears.  After this procedure, he accurately passed a second hearing test.  However, I still wasn't convinced that solved everything.  To me, it still seemed that he processed sounds differently and slowly.

Preschool

When N was 4, I carefully selected a local preschool for him to go to.  I was looking for something that used a strong curriculum especially in literacy.  I chose a preschool that I thought would really help...but it didn't.  Additionally, I signed him up for Waterford's Upstart program.  N religiously did this online literacy program for 20 minutes a day, 5 days a week.  STILL, he did not learn his letters and struggled.  I remember repeatedly calling Waterford and saying, "It's too hard for my son...he can't do it.  You need to reset him to the beginning."  We had to "reset" him in the program over and over.  The program continued to move too fast for him, and he continued to struggle in the learning process.

Kindergarten

Then N entered kindergarten.  I knew going in that it was going to be a struggle.  His kindergarten teacher was not alarmed at the amount of letter/sounds he knew but I was.  N knew about half of the letters going in...which, now that I am a kinder teacher, I realize that is actually very good going into kindergarten.  However, my mama heart KNEW that it wasn't good for N because of how much intervention and exposure he had
already had.  At our first parent teacher conference in November I asked for him to be tested for resource.  His k teacher agreed...and had by then seen many of the concerns that I had.  She was so wonderful to us, even though the process for testing took much longer than it should have.  He eventually was tested in March/April and we had our first IEP in May.  I was frustrated that it took so long, but happy that resource would be in place by the time he started 1st grade. Surely we would start to see some progress now! (If you've read my earlier post, you know that N was also diagnosed with ADHD at this time.)

I Need Answers!

First grade and half of second grade went by.  N went to resource each day, but continued to fall further and further behind.  When N was in 2nd grade, I returned to teaching after my 12 year break.  I even got a job at the same school N and my other kids went to.   As I developed relationships both as a parent and coworker to his teachers, I decided that I REALLY wanted to understand the extent of his learning disabilities.  Why exactly was he struggling?  Why wasn't he progressing? What was going on?   I needed to be his advocate, because the gap was just getting wider. Something had to be done.

Side Note

In fall of that year, N had a huge "grand-mal" seizure...first one ever.  It was a huge shock and it's a whole separate post/issue.  -But as we met with neurologists over that issue, I took the opportunity to ask them about learning disabilities.  They pointed me in the direction of seeing a neuro-psychologist for testing.  There was quite a waiting list for the doctor we chose, but finally in February we took N to get tested.

Results Are In

I was nervous, excited, and anxious as we waited for the results appointment.  When we finally got to meet with the doctor, I was stunned.  N had SEVERE dyslexia and dysgraphia.  He also had moderate dyscalculia.  His working memory was extremely poor.  I asked for clarification...just how bad was it?  What exactly did "severe" mean?  The neuro-psych told me that out of all the patients that he tests every single year, N was in the 1%.  Meaning, only 1% of the kids he sees are as low/severe as N.  This was heartbreaking to me.  But even more heartbreaking...N was also diagnosed with depression.  The doctor reported how he had asked N if he was happy.  N solemnly replied, "Not very much."  I broke down crying when he told me that.  It was excruciating to hear as a mother.  But it also rang true...his depression was apparent...and it really centered around school.  He often cried in class.  He cried when he had to do homework.  He cried when he was frustrated.  Frequent meltdowns were not uncommon.

So to sum it up: When N was only 7 years old, he was diagnosed with dyslexia, dysgraphia, dyscalculia, depression, and anxiety.  Only a couple months earlier he'd been diagnosed with epilepsy and a couple years prior to that he was diagnosed with ADHD.  In addition, only one month later, his pediatrician would diagnose him "failure to thrive" because he wasn't eating.  Quite a lot for such a little guy to handle.

Now What?

So the shock settled and I began to think.  Dyslexia?  What in the world?  Isn't that where you see things backwards? What exactly is it?  Can I do something about it? Ha, I had NO clue.  And here's something even more shocking, teachers are NOT taught about dyslexia.  Yes, it's true and it's insane. It is literally the MOST COMMON learning disability, affecting approximately 20% of the population, yet it's barely mentioned in teacher prep programs or in professional development courses.  I was a teacher and yet I KNEW NOTHING about it.  No one at my school really knew anything about it either.  What was I supposed to do?

And so the spark was lit.  And my huge learning journey began.

Please watch for upcoming posts on this topic and check out a list of dyslexia symptoms by age here.