An Update on My Boy...

It has been well over a month since I have updated about Remi. After my last post, I had several people reach out offering prayers and encouragement- which means people are reading about our journey. This means Remi's story is reaching people beyond our immediate family and that means the awareness I am trying to spread about Dyslexia is being spread- even if on a very minute scale. 

I am going to be very real, in this post. I want to be fully exposed in this, because that is the only way for people to fully understand what dyslexics face, day in and day out, and the only way for true change to happen for these kiddos.

Around the time I posted my last entry, we were days from pulling Remi from the public school system. Days later, I would go on to meet with a homeschooler to get the run down on what the logistics looked like. My sister created a daily schedule that would work for us, I researched curriculum, I read article after article and I barely slept. The only thing keeping us from actually pulling him, was his hesitance. He didn't want to be home all day away from his friends. 

Things were bad. At only 5 weeks into school, we hit what I will call our current rockbottom in this journey. At only 5 weeks into 5th grade, we had our first 504 meeting of the year- at this point, Remi had done beginning of year testing, which put him on a 1st grade reading level. At only 5 weeks in, Remi was still getting his footing, figuring out the transition into 5th grade, hadn't even had the chance to show his capabilities. 

Yet, at only 5 weeks into his 5th grade year, he was referred to get tested for Special Ed.

He 'wasn't making progress', wasn't where the program 'said' he should be. 

Micah and I were completely caught off guard, blown away, broken hearted, and that was when it all started to crumble. 

We refused testing. Anyone who knows Remi, and I mean on a very personal level, knows that kid is absolutely brilliant. He can work with his hands and create like no child I have ever know. Remi was coming home daily, overwhelmed, feeling stupid, hating school, ashamed of himself. We were not only crumbling, but we were watching him also crumble before our eyes. Change had to happen and it had to be fast. 

As a last ditch effort, to make the 5th grade in the public school system a reality for him, we decided to put him on medication and ordered a smart pen. We were giving him 2 weeks, and then we would pull him if there weren't big changes happening. 

This is where we hit road block number one. We started him on a medication called Focalin. He took this for a week and the side effects were not good. Around the time his medicine started wearing off was about the time he got home from school. He was an emotional mess, even worse than before. That Friday, he actually got into a fight at school, which is 100% out of character for him. I gave it to him one more day on that Saturday so that I could see him on this medication. I saw no positive effects, only negative, so we pulled him off. It was scary to see what that tiny little pill did to him.

I spoke with the doctor later that day and we had another choice to make. We could increase the dosage to see if it made a more positive impact, change medications all together, or get off the medication train. I hesitated, almost said no more, but decided we would try one more time with a different medication. If this proved to be another disaster, this was not our answer. 

This was when we hit road block number two. Before we could even try the new medicine, we were told the smart pen was going to be a no-go. It was believed to enable Remi. So, I got in touch with one of my best resources- my sister. She is a junior high teacher and has completely changed the way she runs her entire classroom because of Remi. She is also pretty awesome at having all her little ducks in a row. She immediately started reaching out to her resources and we all started researching.

This is what I think of as 'The Day The Dominoes Fell'. These were some very dark days. Remi was in limbo with medication, still struggling to the point of hating himself, the school wasn't seeming to understand him at all and now we were being denied the very tool we were counting on to be the magic key. I felt helpless and neither Micah or I knew the right move to make. That is when Whitnee sent me her research. It was research on the actual TEA website stating how technology can be an extremely effective accommodation for dyslexics. From here, I showed one of my dearest friends who happens to be the new co-dyslexia teacher at Remi's school. Bless her a million times over. She took that research, showed and convinced Remi's dyslexia teacher to get on board and together, they went to the principals as a united front, for Remi. It wasn't an immediate change of heart, but at the end of the day, it's  pretty hard to argue with TEA. 

These dominoes, my sister, Elizabeth, Mrs. Keeton, straight to the top... this is my why. This is why I will never stop spreading awareness. Had I kept my mouth shut, we would still be at that initial 'no', that door closed in our face. This day I cried tears of joy. It was our first win in a very long time, and it felt so good and it felt big!

From here, our journey got better and better. Remi is doing amazingly well on a medication called Vyvanse. On the lowest dose, the changes were immediate. That first day at school, I was getting positive feedback from every single teacher. I had one teacher reach out to me 3 different times!

What does Remi look like on medicine? He is less impulsive, he is a bit more quiet, I find him thinking more. Homework has been one of the biggest changes. He comes home, gets it done and there are no tears, no complaining- this is huge for us! One day, he took his work upstairs to his desk and did his math independently- this has NEVER happened. Just this week, he did all his Reading homework at school independently. Last week he made a 100 on his Social Studies test. He also just made a 97 on his math test. He is flying through Gary Paulsen books and acing the tests. Now, he is listening to these books on Audible, but he is comprehending and successfully testing on books levels and levels above his reading level.  Remi is hitting in baseball like never before and in one game he caught 5 fly balls- his focus is laser sharp! Remi sits down and plays the piano on a level I've never seen from him- it is incredible. He has started drawing elaborate and impressive drawings. He told me the other day that he felt like the medicine opened up another level in his brain. 

Remi just made the UIL Chess team and for the first time ever decided to check out Number Sense. His initial intentions were to attend practices for tricks on mental math- he wasn't counting on making the team. Well, he just made that team too. His handwriting changed overnight. It went from frustrated, strokes to legible letters. His confidence is trickling back in and he is finally believing that he may just be as incredible as I know he is.

Remi doesn't use his pen at school everyday. He is still a bit embarrassed, but we are getting there. He prefers using it in math more than any other class and when he does use it, he says it is very helpful. As of today, I would say Remi is thriving and has found his own version of success as a 5th Grader in the public school system. 

How is Remi's dyslexia on medication. I will be honest and say it is really about the same. He took a reading benchmark a few weeks ago on the computer and made a 48. He retook it on paper (his request) and made a 58. What this tells me, is that we were right in believing there is nothing going on besides severe dyslexia. His medication has unveiled and brought to light what his struggles actually are. They aren't learning, they aren't math, they aren't comprehension, they are just dyslexia. 

I am not surprised that Remi failed his reading benchmark, nor am I upset. Testing has already shown he reads at a 1st grade level, so him failing a 5th grade reading test, makes perfect sense. Had that test been read to him, he would have aced it, no doubt. 

So, where do we go from here in terms of his dyslexia? Current intervention is proving to be less effective than what most dyslexics experience. In effort to further help him, he is doing extra dyslexia tutoring three mornings a week and is starting completely over with his dyslexia program at school. 

Remi is being successful, aside his actual independent reading. Even failing his reading tests, he pulled a high B. I am ok with where we sit right now. He is having enough successes elsewhere that he is able to have a good self perception. 

I continue to do research, in hopes of finding that magic key, because please know, I will never throw in the towel. In the past few weeks, I have stumbled upon something I believe to be a possible new method of intervention. It is a completely different way of approaching and understanding dyslexics like Remi. I am still doing some pretty intense reading on this, but it has me intrigued. I will update on this if and when it comes to fruition. 

Remi is fighting with everything he has, he is showing up at school everyday facing his biggest struggle head on, he prays fervently for peace and compassion from his teachers, he has found his second wind, and slowly but surely he is conquering this mountain.... and it is the most beautiful thing I have ever witnessed. 

Off Medication

On Medication

On Medication