What I Wish You Knew About Dyslexia – One mom’s journey

Our identical twin boys, now 15, were diagnosed with Dyslexia in the first grade.

Man, I love these kids!
We were very lucky that they were diagnosed so young and we were able to immediately work alongside their elementary school to get them the help they needed.
After one year of public school intervention, we realized they would need more, so we enrolled them in The Fairhill School for their second grade year. This was  a GREAT idea, and although we couldn’t afford to leave them there (both because of the finances and because it was 40 minutes from our home), in that one year they had a 3 grade level improvement in their reading and were able to get back on track.
I’m not an expert on Dyslexia from an academic standpoint (here’s a great article if you’re looking for that) But I am an expert in what it’s like to be Matt and Wil’s mom. Here’s what I wish others knew:

People with dyslexia are, in fact, very smart. We would have frequent comments from well-meaning friends and relatives that went something like this “I can’t believe how smart they seem even though they have dyslexia!” OK, let’s be clear, I don’t believe IQ is some sort of test of worthiness, but in order to have a learning difference diagnoses, you’re looking for the gap between their cognitive ability and (in our case) their reading ability. The gap for the twins was huge. Meaning, they ARE very smart. Their brains just work differently.

Sometimes dyslexia looks a lot like ADHD. But it’s NOT ADHD. More than once over the years we have had teachers forget that their 504 (special education) status is for Dyslexia and assume it was for ADHD. This is a DANGEROUS assumption. One of my sons, in particular, would much rather be called out for being disruptive then for having trouble with an assignment. Want to know if he’s struggling? If he’s acting out and being disruptive, he’s struggling. They’ve both been tested for ADHD and they don’t have it. It just presents like that sometimes. We were once half way through a 504 meeting before I realized that one of the teachers in the room had been giving them ADHD accommodations, not Dyslexia ones. That’s really not OK.

At the end of the day, my boys are exhausted. The school day is long for any child, so imagine what it’s like when you have to work 3 times harder than everybody else to achieve the same level of work? My boys are very high energy, but when they get home at the end of a long school day, they are WIPED OUT. Moms and dads of kiddos with learning differences, I officially give you a huge pass when it comes to giving them extra time to chill after school. I used to try and do homework right when they got home because that’s how I was raised (get your homework done and then you can relax) but if I tried that with my boys, we would all be a mess. They need down time desperately. The homework can come later.

Foreign language is very difficult. My boys are both struggling to fulfill the foreign language credit in high school. Some districts allow exceptions from foreign language for kids with dyslexia. I truly wish ours did. It actually seems a tad torturous. Next year, they are both switching to American Sign Language and we’re hoping that’s a great experience for them. Trying to learn French and Spanish when you struggle with your own language is a very tough thing to do.

Standardized tests are hell. Even with accommodations, these tests are really tough on my guys. There’s got to be a better way to measure what they’re learning. I seriously get sick to my stomach every time these tests come around, especially since now it determines if they can move up to the next grade level. I watch them get rashes and lose sleep and worry excessively. It’s not right.

We don’t interfere much anymore in the classroom now that the twins are in high school. We’ve worked hard to instill in them a sense of self-advocacy because we won’t always be around. Their public school years have not been easy, not by a long shot, but they’re young men of great character and we’re so proud of all they’ve achieved.

And to all the moms and dads out there dealing with a newly diagnosed learning difference, hang in there. There will be good years with good teachers who get it, and there will be bad years with teachers who either don’t or won’t understand. But hang in there with those kids and make sure they know you’re on their side. And reach out to other moms and dads in your same boat – because we need each other. OR, as we say around here (with our tongues planted firmly in our cheeks)
DYSLEXICS OF THE WORLD – UNTIE!
Happy running. And parenting.
Jen

11 thoughts on “What I Wish You Knew About Dyslexia – One mom’s journey

  1. Reading this Im in tears at how much I can relate. My sister is a member of IBC and shared this with me…. I have 3 kiddos and 2 out of 3 have dyslexia and the other one has other learning disabilities…. this year has been HELL dealing with the public school system and having to fight them on everything….. Thank you for sharing your story and your encouraging words. God bless you and all parents that can relate to this!!!

    1. Amy – I’m so glad my words encouraged you! I was so overwhelmed in the beginning and it seemed so hard to find other moms in the same boat. So glad you found the blog – thanks for reading!!

  2. This gives me anxiety as my 8th grader preps for high school. I have written many suggestions for parents with younger kids with dyslexia. The high school years will be new territory! My son is a competitive tennis player and I will say sports has been an amazing outlet for the mental fatigue! laura

    1. Totally agree about the sports! One of the twins is a wrestler on our high school team and it’s a great outlet for him. The other one is a creative so he uses his drawing as an outlet. Thanks so much for reading! The transition to high school has been a little rough but I think they’re figuring it out! Good luck!

  3. I have been avoiding reading this because Gideon’s first ever standardized tests are fast approaching, and with it, his level of tiredness has increased. I know he’s stressed and it just hurts my heart for him. He even cried several times last summer because he was so anxious about starting 3rd grade and STAAR (STARR?) testing. Thank you for the encouragement! I think I’m going to put together a few “test relief” bags for the teachers for those days. After reading the comments, maybe I should start running with him outside of his running club days….or doing my best to run with him 😉

    1. I think that’s a great idea! the physical outlet will definitely help him. I would love to say it will get easier, but the standardized test portion is just to be endured. We’ve had years where one or both boys had to retake and the truth is, it’s not the end of the world. Hang in there!! God made you his mom for a reason! He’ll get where he needs to go and so will you!

  4. I am so excited I found your page. I am also a runner with a running blog :). My daughter is 12 and severely dyslexic. I home school her and she does Barton tutoring and NILD. We found out when she was in kindergarten and she has been tutored since. She is in 7th grade and reads at about a 2nd maybe 3rd grade level. Some days are just hard and I agree with all of your points above :)!

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