Home » Dyslexia » Did you have to battle to get a diagnosis?

Did you have to battle to get a diagnosis?

Yes and no.  It was a very VERY V-E-R-Y long journey.  As I said in the previous post we had known something was going on with #2 when he was in preschool.  I spent 4 years trying to figure out why he was having such a difficult time in so many areas of his life.  He had a kindergarten teacher that I love and trust and she supported all of my concerns.  The kindergarten teacher said that red flags for a learning disability went off for her when she was working with a small group on letters.  Everyone was getting the letters and #2 was still stuck on learning one letter, just one!  Suddenly he put his head down and said, “This is perhaps the most exasperating thing I’ve ever encountered in my life.” His vocabulary was intact (although he had major articulation issues), letter identity was definitely not happening.

We went to the U of M for a test with the pediatric neuropsychology clinic the summer between 1st and 2nd grade (after an 8 month wait).  They tested him for 7 hours and 3 weeks later I received the results.  They put his IQ incredibly low and said he was having a hard time reading because he did not have the cognitive ability to read.  I was furious and heartbroken….not because I believed them, but because I didn’t.  We had wasted almost a year and I was starting to panic.

I had been reading Overcoming Dyslexia and was convinced he was dyslexic.  #2 fit all the signs of someone who is dyslexic.

Ian

According to The Yale Center for Dyslexia and Creativity the signs in kindergarten and first grade:

Reading

  • Reading errors that show no connection to the sounds of the letters on the page — will say “puppy” instead of the written word “dog” in an illustrated page with a dog shown
  • Does not understand that words come apart
  • Complains about how hard reading is, or “disappearing” when it is time to read
  • A history of reading problems in parents or siblings.
  • Speaking
  • Cannot sound out even simple words like cat, map, nap
  • Does no associate letters with sounds, such as the letter b with the “b” sound

Strengths

  • Curiosity
  • A great imagination
  • The ability to figure things out
  • Eager embrace of new ideas
  • Getting the gist of things
  • A good understanding of new concepts
  • Surprising maturity
  • A larger vocabulary for the age group
  • Enjoyment in solving puzzles
  • Talent at building models
  • Excellent comprehension of stories read or told to him

My pediatrician found an educational psychologist and she tested #2 a couple weeks later.  She spent about 4 hours with him and then gave him a phonics test.  She discovered he had absolutely NO phonemic awareness. After a couple more tests to figure out strengths, it was obvious to her that he was profoundly dyslexic.

Henry

With #1 we had also had questions for a long time.  He was a later talker, which is probably because he is dyslexic.  He didn’t read much until the end of second grade and by 4th grade he was far behind his peers in reading, although he had been given ever opportunity to be a good reader.  He avoided it at all cost.  And writing…..what writing?!?  His notebooks were blank.  Afew weeks after #2 was diagnosed we brought #1 to the same educational psychologist and he also had no phonemic awareness and showed many of the strengths of a dyslexic child.

Eddie

We have not gotten #3 tested.  He is in kindergarten.  And, while he struggles with all things having to do with letters, his personality is much different than our older two children.  Life is a party for #3.  He loves everything about school.  He is getting the support he needs at this point and I know how to support him at home (something I didn’t know much about 4+ years ago).  I don’t see any point in having him tested at this point (not to mention the obscene cost of the testing!).  Perhaps the time will come when we need a label to get more services, but at this point I’m just following the path of the party and enjoying watching him still be full of wonder and joy.

My advice to parents is always….trust your gut.  Don’t let teachers or other people say that the reading will come.  If you think there is a problem, start digging, and ask a lot of questions.  If a diagnosis doesn’t seem to fit the child you know, get a second opinion.

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2 thoughts on “Did you have to battle to get a diagnosis?

    • I’ll be posting a lot more about the strengths of dyslexia as time goes on. Its really fascinating to me. In my opinion, children with dyslexia need to have these gifts intentionally nurtured by caring adults. Of course all children need their gifts nurtured, but I think its particularly critical for children who have such difficulties with tasks that appear easy for many of their peers.

      And yes, it is an amazing challenge….it goes well with my endurance athlete mentality. Thanks for your thoughts.

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