dyslexia

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**It’s been soo LONG since my last blog entry, I’ve been working on a few to try to catch up. This is story I am about to share is very personal and has been such a huge part of our lives over the last year and half. Out of compassion for all the others who maybe are struggling with this currently, I hope this brings you hope and encouragement.**

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This last year I’ve felt super protester mom over the education system in Texas. It’s taken me quite some time to process everything as we have navigated the waters of new territory both literally and mentally. I felt like I needed to share our story and my personal soap box aka blog is probably the best place.

Let’s flash back about to over a year ago. We had concerns with K’s lack of progress in the reading department, we could see his school work being effected and him needing extra support in the classroom. (A little backstory… K was slow to talk and was in speech therapy as an almost but not quite 3-year-old. As he got older he struggled with the alphabet and saying them in the order, eventually getting it down but much later that anticipated. He never was into singing nursery rhymes. He still sometimes will struggle with numbers, getting tripped up on or skipping a few. Red flags started flying when practicing sight words and he is constantly forgetting the same words we just read over. (I mean to the point that he is frustrated, then I am and sadly we both end in tears.) At this point, I am feeling like worst mom ever. Why isn’t my kid learning this stuff? What am I doing wrong? Should I get a tutor? All those things right. So I spoke with my friend (home school teacher/ former elm. teacher) about our struggles and she had said she just watched a documentary during a seminar thing and felt like I would benefit from watching  The Big Picture: Rethinking Dyslexia. (It was on Netflix for a short time about a year ago but seems now it’s on HBO.) At the time I was kind of like in the boat of “well surely there isn’t anything wrong with him, he’s a normal kid he’s just stubborn and forgetful”. But immediatly after watching I jumped ship, I am now sitting on the … “hmm, ok this is a real thing and possibly our thing” boat. Now I am like, what next? I read articles, checked out books from the library, subscribed to blogs and reading blasts all still pointing towards the direction of dyslexia. This is where I start talking with his teacher mentioning that I wasn’t an expert on it by any means but I worry that there is something more than just forgetful/ stubborn behavior. When I start talking learning disability, I can already see alarms going off in her eyes. She explained that testing could be done if I requested but is only done once a year, in the spring so they would have to monitor him all year to see if he’s even qualified. (At the end of the year… seriously?) The whole year I collected samples, still seeing little progress on reading and before we knew it, it was spring. The school monitored him and came back with the conclusion that he was not a valid candidate for dyslexia testing based on his inconsistent test scores in other subjects. That was that, I felt like we were back at square one. What now? There was nothing more the school was willing to do other than tier 3 RTI support. RTI obviously wasn’t the solution because he only moved up the tiers rather than showing improvement. That summer I met a mom who had similar story about the school denying testing and she said she had submitted a package and application to the Scottish Rite Hospital for Children in the Luke Waites Center for Dyslexia. (The story how we met is so crazy, it gives me chills thinking about it because I have no doubt in my mind that The Lord sent us into this store to meet this special woman. I see this total stranger (sales lady) reading signs with K in the store. He was frustrated and she gave him confidence to push through. I was watching from a little ways and smiled at her thanking her for giving him that moment. She smiled back and said “My son is dyslexic and so am I, so I know how frustrating it can be to read even simple things.” My jaw probably hit the floor in that moment. I cried right there in the store. She shared all the details of her school denial and process at TSRHC and assured me that mommy gut feelings aren’t usually wrong.) TSRHC was something I didn’t even realize was a resource available. We submitted and we waited. We ended up getting pushed through a little faster because we were running out of time with the upcoming move to Maryland. The committee accepted his application based on his DRA test scores and RTI background. He was tested within the week. His results came back only a week later with the dyslexic diagnosis, superior IQ and combination ADHD. The issue was his IQ is so high he was able to just get by with his learning disability plus his ADHD is combination meaning inactive and hyperactive so on his “on days” he was really good and his “off days” he very poor, thus the inconsistent test scores. Sounds like a recipe for disaster, it basically made K look like a problem child in the class room. After diagnosis we were going through so many emotions but mostly glad we got an answer to be able to pin point the exact type of intervention to help build the skills he’s missing. I was validated on my gut feeling but still left with a sick feeling that we were failed by our school system. Their denial was based on inconsistent test scores. My question is… “how can a dyslexic child test well in any subject when they can’t read the question on the paper like the other students they are being rated against?” Dyslexia doesn’t only affect letters its affects numbers as well. A Houston reporter, Brian Rosenthal wrote an article around this time that further confirmed my rejected feelings called Denied that exposed TX school systems and their “cap” on special education. It all made sense why Kingston was not selected to be tested on the school district level after reading the article, but it broke my heart for all the other kids who are missing out on the support and tools they need because of a “cap”. It honestly made me want to break into a hippie protestor mom mode. I was furious. As parents we want to trust that the schools, teachers and administrators are the professionals and that they have our children in their best interest. (I realize that I can’t paint them all with a broad brush, because we have had some pretty great teachers … but some pretty eh teachers along our way.) I still keep up with the Denied article updates and saw The Houston Chronicle just posted this week saying that investigation into TX school systems is full force even under Trump administration. I hate that we missed out on almost 2 years’ worth of LD support and understanding because of this “cap”, I hate that I almost thought that the school was the last hope, but mostly I hate that some families are probably feeling hopeless because of the lack of support in TX schools right now. I hope changes are coming for the education systems in TX and more value is placed on the education and the children rather than a number and money. Moms & dads, if you’re feeling something in your gut… don’t give up, be your children’s strongest advocate and never give up. I’ll step down off my soap box now.

Since we’ve moved, K is currently on a 504 plan at his new school for his dyslexia and ADHD. We have applied for an IEP for additional services like occupational therapy for his handwriting that seems to be a part of his dyslexia, called dysgraphia. We currently utilize services like bookshare, a web based library for people with print disabilities. Although, it does sound like Stephen Hawking is reading to you, it has worked great for us. The book shows and the words are highlighted as you move along. Thankfully this is a lifelong service and even something K can utilize in college with any requested textbook. Although, technology should be so high tech by then… books will probably be reading to us right off the pages. I imagine it being like some Harry Potter kinda stuff with holograms and all. *sigh* I can’t wait!

We currently try to keep ADHD under control with diet, sometimes it’s really hard and it is still a learning process for us. I’ve spoken with moms who do the feingold diet, and I totally get the organic and food coloring restrictions. I hate food coloring and try to avoid at all costs; but sometimes you gotta get a little crazy and eat a twizzler or that crunchy cheeto or a whole bag you know what I’m sayin’. Still a work in progress. Anyone else have other diet suggestions that work for them?

We are extremely happy with the support his new school has provided and we are already seeing so much improvement in all subjects, YAY! Plus, a little tid bit, Maryland is home to IDA, the International Dyslexia Association so I feel like we ended up right where we needed to be for our situation.

 

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I took this picture the day of K’s testing, I remember feeling grateful we got this opportunity. I remember thinking about how pretty soon he’ll be too cool for playgrounds and hanging with mom. So I remember savoring the moment, snapping the pic, putting my phone away and jumping right on with him.

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** I am forever grateful for the sweet ladies at the Luke Waites Center for Dyslexia at The Scottish Rite Hospital for Children. Everyone from the cafeteria ladies, nurses walking the halls, receptionist, doctors and child phycologists were so kind and helpful. Stephanie Forbis, one of the assessment specialists was especially instrumental in getting our package reviewed by the committee so soon and getting us in so quickly, we are forever and ever grateful.

** Also, to my loving friends back in Texas and family who has been by our side through the process and given us words of encouragement and love, your kindness means the world to us.

** I do believe that God had his hands all over this situation, every step of the way and for that I am eternally thankful.

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