GETTING A DIAGNOSIS OF DYSLEXIA 

Link to the video Dyslexia Diagnosis and How We Got there

The road to a diagnosis of dyslexia is usually a bumpy one. If you have a strong family history of dyslexia and know what to be looking for in the preschool years, such as difficulty developing speech or inability to rhyme, then maybe you can get a diagnosis by around age 5. But for most kids, the diagnosis usually is not made until a child has struggled in school for a few years.

**Let's pause right here to address the word diagnosis. Dyslexia is considered a medical diagnosis, however, we need to be cautious about framing this as some type of disease. Dyslexia is not a disease. It is more a description about the way a brain is connected and networked for doing certain tasks, such as reading.  Depending on the source you read between one in five, and one in 20 people have a dyslexic brain.  Having a dyslexic brain is simply an attribute like being left-handed or having green eyes, but it is not a flaw. Thinking about it in this way will be key to how you will explain it to your child. More to come on that is a future blog.** 

OK so back to getting a diagnosis or as they say in the education world, “getting labeled”. I will share our story because I think it’s a pretty typical one.  Well, typical in most ways, except it involved a global pandemic. 

OUR JOURNEY TO A DIAGNOSIS

Three years ago, thanks to COVID-19, my 7 year old daughter spent the better part of 2nd grade learning from home. She was born with a heart condition (Go CHD warriors💔), and we were super cautious about protecting her in those early days of the pandemic.  Every day we watched her struggle with online learning, but what kid wasn’t?!?  She would fight us on doing any kind of reading or writing. The few times she would read to us she was guessing at words based on clues like the story plot or the pictures, but she struggled to “sound out” a word. She would often wiggle around and have trouble following the words unless I was pointing to them. By the end of 2nd grade, it was clear to me that the problem wasn’t only online learning..  Honestly, though, I thought it was ADHD (Attention Deficit Hyperactivity Disorder). My daughter NEVER stops moving.  Often one of our struggles with getting her to read was getting her to sit still long enough or not be upside down. There is also a family history of ADHD, so I figured we were on the road to Ritalin to solve this issue. 

THE STRUGGLE TO GET ANSWERS

We knew that school was offering her some extra support with reading and math, but didn’t have any real grasp on where she was in relation to her peers. When I asked the school to perform an evaluation for a reading disability, I learned that the school was not willing to do an evaluation unless my daughter failed to make progress with multiple different attempts at intervention.  Every place does it a little differently, but in our district she would need to go through months of small group intervention and, if she continued to not make progress with these interventions, THEN they would consider doing an evaluation.

Here are the ways to get an evaluation for dyslexia.

1. The school psychologist can do an evaluation - most parents try to start with this because it’s no cost to you as parents.
2. You can seek testing privately with a psychologist in your community. When searching for a person who does this you should look for these key terms::

• -psychoeducational testing
• -neuropsychological testing
• -academic testing

This testing can be very expensive and is rarely covered by health insurance.  

  We decided we didn’t want to wait for her to get further behind, and we have the privilege of enough savings to afford it,  so we pursued an evaluation privately.  The testing took place over multiple sessions. The evaluation revealed Dyslexia and ADHD.  It’s pretty common that these two things run together. We brought this evaluation back to the school system in a PPT meeting, but before the school agrees to services they usually want to do their own evaluation.  Remember, providing appropriate services can be costly to a school system so they need to be diligent in verifying a “label” like dyslexia.

WHAT CAN A PARENT DO IN A FLAWED SYSTEM?

The “failure before testing” system that most school districts use is a very flawed one, and it honestly makes me angry and sad.  Often by the time kids have gone through several rounds of “extra help” or interventions without making progress their self-esteem has plummeted and they’ve identified themselves as the “dumb kids”.  This is wholly unacceptable.

The Individuals with Disabilities Education Act has a section in it called the Child Find mandate that says “The State must have in effect policies and procedures to ensure that…children in need of special education and related services are identified, located and evaluated.” In other words, they are legally required to seek out and find kids with learning disabilities. In reality, there just aren’t enough resources for this.  The interventions can help to sort through the struggling learners to try to figure out who just needs a little boost to catch up and who truly needs special education.  

This broken system is why parent involvement is so important. The teachers may be doing their best, but it may not be enough for your child.  

Here’s some questions to ask:

• -What type of interventions is my child getting?
• Are there different tiers or levels of intervention?  If so, what tier or level is my child in.
• -How long does my child have to spend in interventions before an evaluation will be done?

Keep asking questions, keep advocating!

You got this, parents.