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A parent's view--get an actual diagnosis!

Submitted by an LD OnLine user on

Hi,

To the parents out there who are worried or suspecting their child may have a learning disability; Don’t let the school tell you that you are over reacting. If you are unsatisfied with the school’s opinion, go with your gut and pursue this on your own. It is expensive to have an outside evaluation done, but it is very worth it.

I am a mom whose 9 year old son was just diagnosed with dyslexia this year. We had to pursue this on our own as he did not meet the school’s criteria for any kind of evaluation or assistance. He has always tested slightly below the reading fluency benchmark and was placed into RTI level 1 for reading fluency in second grade. He has been able to “hide” his dyslexia somewhat and has managed to be on the 3rd grade honor roll all year. This has required a lot of effort to acheive. Reading is exhausting, spelling is bad, writing is hard, and math facts don’t stick easily. I just had a gut feeling that there had to be a reason that this kid was not reading, spelling or writing well. He was smart, had lots of exposure to books and stories at home, (more so than a lot of other kids), and should have just “picked up reading” easily my husband and I thought. When that didn’t quite happen, I decided that he wouldn’t just “grow out of it” as was implied by staff at the school. I am so glad my husband and I had the good sense to go further and had him officially evaluated by a psychologist.

On a whim one day, I researched dyslexia and started to realize that this description seemed to fit our son’s problems. His teachers felt like he was very well behaved, but slightly inattentive at times, and that he seemed to occassionally “zone out” and seemed somewhat unmotivated. They implied he probably had ADHD, and I knew from my experience with ADHD in our family, that this just didn’t feel like the right diagnosis. I told his teachers I thought he was dyslexic and requested a meeting with the school evaluating staff. They basically said that they saw strengths and weakenesses, but since his lowest grade this year was a 93 and his highest was a 99 and he was making the honor roll, why in the world did we think he had a learning disability?

We had him tested and it turns out he did not have ADHD, was extremely intellegent and gifted, but definately dyslexic. I took my report back to the school and showed them that he indeed received that diagnosis and is considered to have a learning disability in reading and writing. We requested a 504 plan over and IEP at this time since he is able to function well enough in the class this year without one. We decided that for him it would be better to keep him out of having to go to a special class and have sought outside tutoring instead. The 504 plan basically just gives him some more time on tests, and note taking assistance since his tracking and copying ability is poor. We may need an IEP in the future, but this year we are starting with the 504 since his grades are still good.

Tyring to explain to the school that my child is gifted and dyslexia was rather amusing. The Guidance Counselor just basically rolled her eyes in the 504 meeting as if to say, “why are we even bothering with this kid.” UGH.

My point is that if you think your child has an LD and doesn’t meet the school criteria for an evaluation, get an outside opinion. It is worth it. Now our son will not have to go through life wondering why some things are hard. Having an answer for him is great, even if he doesn’t really understand it now. There are so many smart kids like my son whose gifts and disabilities are both missed by the school. Spend the money, get the right answers for your kid.

My 2 cents.
[Modified by: Elle76 on March 16, 2013 08:22 PM]

Submitted by Garrett's mom on Sat, 05/04/2013 - 7:43 PM

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Your story is very similar to mine. My third child never seemed to learn as quickly using flash cards and pre-school learning sheets as his two older siblings, although his intelligence level seemed pretty high. He loved to be read to, but wasn’t able to pick up alphabet sounds or phonics. I tried for 3 years to get the school to intervene and evaluate him, but it wasn’t until his reading level fell so far behind his peers that they finally did tests in fourth grade and found that he did indeed had “a learning disability” which they never labeled, but I believe is dyslexia. He had always learned very well with visual (or hands on) teaching but struggled with sounding out words, reading, and writing. He often got the b and d mixed up as well as other letters and numbers. He was very well behaved in class, but would get “lost” in his own thoughts and was inattentive. He was diagnosed with ADD in kindergarten and treated medically, but the four or five different medicines we tried made him sad and depressed with no real positive results, so we ended up taking him off them. I now think it was the reading disability and not ADD that was causing his inattentiveness.
Public schools seem reluctant to do testing, but as parents it is our job to be our child’s advocate. My son is now entering high school next year and even though he is still not reading as well as most of his peers, he has come far. He has chosen engineering as his field and loves inventions, so that is probably the area(s) he will pursue.

Submitted by Elle76 on Wed, 05/22/2013 - 12:18 AM

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Your welcome. I think our stories are not that unusual. I know of several others in my son’s school who were diagnosed with ADHD (inattentive type) early on, and have now been re-diagnosed with dyslexia instead. It is my understanding that there is some good potential for misdiagnosis with ADHD and dyslexia because the two do share some similar symptoms (loss of focus, executive function challenges). A good clinician who spends hours looking long and hard at both possibilities should have a good shot at distinguishing between the two. It really depends on who is doing the evaluation. However, compounding the problem, is the fact that a person can have both which can make it extra tricky to figure out. It is important to recognize I think that while there are some overlapping symptoms, the CAUSE is not the same. Current understanding of ADHD leans toward more of a basis in the neurochemical processes of the brain which is why some medications can be effective in alleviating the symptoms by altering the neurotransmitter function in the brain. Dyslexia as we understand it now is more of a structural, biological, anatomical road map you are born with. To “fix” dyslexia would be more akin to digging up a highway and moving the lanes to a different location. I view it as sort of a normal variant in the population as there is nothing wrong with a person who has dyslexia, you just don’t completely fit the narrow definition of the “correct way to learn” in our school system. I understand there is some interesting research going on at a university (Yale I think) that is looking at a medication for dyslexia, but I think it is experimental and I don’t know what the medication’s goal is, or what it targets specifically.

Submitted by dhfl143 on Fri, 05/24/2013 - 5:18 AM

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You are right, but the more people who share their stories the better informed parents can become and the better chance that children will actually be met at their need.

I would also suggest you research twice exceptional resources such as this:

http://m.facebook.com/l.php?u=http%3A%2F%2Fwww.nea.org%2Fassets%2Fdocs%2Ftwiceexceptional.pdf&h=pAQEh3iri&s=1

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