A Long Overdue Eddy Update

I can't believe it's been three and a half years since I've updated this. Looking at the pictures from my last post, eight-year-old Eddy looks like a baby. Eddy is now twelve, and he is in the throes of puberty. He was just eating lunch, and we were talking on his letter board, and I noticed chin hair. Like quite a bit of chin hair. 🥹 He has grown seven inches since last year. We had to buy all new clothes for him. He is taller than some grown ups now. My little teeny guy, who was the same size as his little sisters for years, is now a big pre-teen. Even though he is still not verbal, you can tell from the sounds he makes that his voice has changed. His giggle is so deep. It's adorable. I miss my little sweet guy that I could pick up and hold easily, but I'm really enjoying my big, funny, clever little man. (And I can still pick him up, which I do about once a day, when he stands up on my bed and falls into my arms, just so I can hear that deep giggle. 😊)

A lot has changed in the past three and a half years. Eddy aged out of the autism classroom in Cuba after the 2019-2020 school year. Then we kept him home for the majority of the 2020-2021 school year due to Covid. The 2021-2022 school year was an absolute nightmare. Even though I fought as hard as I could against it, Eddy was placed into a 12:1:1 classroom in our district that was just not appropriate for him. He actually regressed that year. He was not included in circle time the entire year, but was kept in his chair in the corner. There was massive turnaround of teachers and aides. I was not allowed into school due to Covid restrictions. All of this added up to the unfortunate reality that my happy boy was just not happy in school. He was still doing well at home, but he made no progress the entire year in school.

Thankfully, around this time, we found out about RISE Academy, a special needs BOCES school in Olean. Eddy has been in a 12:1:1 class there since September of 2022, and he absolutely loves it. RISE, which stands for Restorative, Innovative, Supportive, Exceptional, is all of those things. Everyone knows Eddy. Everyone accepts Eddy. He is not treated as though he has significant special needs, like he was at some previous schools. He's treated as a human being. When I went into the school last year to help demonstrate the letter board to his teachers and therapists, I had several people that I didn't know, including a cleaner and someone who worked in the cafeteria, tell me that they loved Eddy, and that seeing his smile every day brought them joy. That was all I needed to hear to know that my son was in the right place. A place of Acceptance. Anyone who has a child with special needs understands how rare, yet how desperately important, that word is.

Even though we love Eddy's school, he is still not where we would like him to be regarding academics and the letter board, mostly because Eddy is still a stubborn (while simultaneously being brilliant, sweet, and clever) boy. At home, he generally does very well for me and for a few other people who work with him. (Rosa, our nanny, gets a lot out of him; Lia and Mary Kate, who are both Bona students, can get Eddy to talk on the letter board when he's not being extra stubborn.) A consistent theme with Eddy for his entire life (one I've probably discussed in previous blog entries) is that, even when he's making great gains at home, he has difficulties generalizing his abilities to a school setting. He has basically always done much better academic work at home than at school. At home, he is years and grades ahead of where he is at school. At home, he is learning high school and college-level academics; at school, he isn't demonstrating proficiency at many elementary-age topics. I have a lot of theories as to why this is happening - he's bored at school, he is stubborn, he thinks that showing what he's capable of will result in him having to do more work...I think all of these are partly true, but the biggest reason is that he has not been able to effectively communicate with any one person in the school (partly due to an incredibly high turnover rate of teachers and aides, partly due to the fact that it just takes a lot of time and patience to become proficient with the letter board), and without the ability to communicate, Eddy can't show what he truly knows. For example, at home, Eddy has taken my entire college business math class, spelling his answers on the letter board and pointing to the correct numbers on the number board. He loves calculus, especially derivatives. In school, Eddy doesn't consistently demonstrate that he can add and subtract. So you may be asking, "Why even send Eddy to school?" For years, I wanted to homeschool him, but Ed didn't think that was feasible or truly beneficial to our already-crazy schedules, or to Eddy. And I agree with him now that we've found such a supportive school that Eddy loves. The therapies that he receives every day, from amazing educators who really want to help Eddy reach his full potential, are a huge benefit and necessity of Eddy being in a school setting. Also, Eddy really needs the socialization. Just like three years ago, and six years ago, and ten years ago, Eddy still does not have much interest in his peers. He still prefers adults, and although it's great that he loves basically all grownups, we really want him to start making friends (something, I'm happy to say, is transpiring this school year!)

So we are not sure exactly where school will take Eddy; but we do know that he is currently happy and excited to go. Best case scenario is that we can find someone who is able to effectively communicate with Eddy, who can go class to class, year to year with him, and allow him to demonstrate his brilliance. If this happens, Eddy could definitely take all classes, no matter the level. I have no doubt of his intelligence academically. 

We have been very encouraged by a fellow RPM family in Buffalo who helped their daughter with nonverbal autism graduate with a Regents Diploma by following this process. Parents who have come before us have paved a hopeful way, and that is what we wish to do for other autism parents. It's definitely not one-size-fits-all, especially when it comes to autism, but there is SO much potential, SO much hope, SO much future for these kids. We can't ever give up on them, and we have to keep striving to help them reach their full potential. (And if you haven't watched the movie "The Spellers" yet, I highly recommend that you do!)

Something that I've discovered in the past few years, by working with Eddy on the letter board, is that he has a photographic memory (like his dad). If he sees something once, it sticks. He recently asked to do some optimization problems in calculus, and he remembered everything, including all of the formulas, that I taught him last year. I asked him how he remembered and he spelled, "Mommy I am really smart." I said, "That's obvious buddy but a lot of smart people can't remember as much as you can remember," and he said, "I have a photographic memory." I figured this for awhile but it was nice to hear him say it. (Or watch him spell it, I suppose.)

In addition to loving calculus, Eddy also loves to write poetry. I'd like to share with you some of Eddy's poems. He's written probably 50 at this point, but here are a couple of my favorites:

"Hi World"

By Eddy Bysiek

Packed

Really packed

So totally busy

Going places right now

So fast

Too fast

Time to live, really live

Slow down

"Souls"

By Eddy Bysiek

Hidden inside of a heart

Souls lie motionless

Searching for a reality

All beating together

We have also discovered over the past two years that Eddy loves to travel, and his absolute favorite place is the beach. As I mentioned in my last blog post, when we had traveled with Eddy for the first time to Disney, it is incredibly daunting to consider and execute the logistics involved. Eddy is still on the ketogenic diet for epilepsy (ten years now, but he's doing so well we won't consider changing it), and so we have to bring his food with us every time we go anywhere. This past Christmas break, and the previous one, we traveled for 18 days. We left right after Christmas and didn't get back home until the day before classes started at St. Bonaventure. Last year, we stayed in the Bahamas for the entirety; this year, we went to the Bahamas for 11 days and Orlando (Universal) for 7. I have to admit, before we attempted travel with Eddy, it seemed impossible. The thought of bringing his breakfast, lunch, dinner, and snack with us for 18 days seemed insane. It was easier to just stay home. But traveling for 7 days also seemed crazy; by the time we arrived, we'd have to leave. Last year, though, when we saw how happy, how truly joyful, Eddy was on the beach in the Bahamas, we realized that we needed to make this happen every year. This year, we had some very difficult travel experiences - on the way to the Bahamas, we missed our flight by minutes and had to stay overnight in Miami. On the way home, there was a huge snowstorm in Buffalo and we were forced to reroute to Toronto and drive home from there. Suffice it to say that we now know Eddy, and all of us, can handle just about anything when it comes to flying. Eddy is an excellent traveler, and he has really encouraged us to just continue to make it happen. 

 

Regarding seizures, my least favorite topic on the planet...Eddy continues to have seizures once or twice a year. We are thankful it isn't any more than this, but when it happens, it absolutely drains and depresses me. It is what I worry about more than anything else. It generally happens now when Eddy is overly anxious or excited about something. We still haven't given Eddy a bath since October of 2018, when he had seizures after the attempt, but baths are not the only trigger. The last time Eddy had seizures was May of 2023. I had a major surgery, and although I tried not to make a big deal about it, Eddy was definitely aware. Five minutes after I got home in the evening, gave Eddy a hug, and said, "Mommy's ok buddy," I saw him stare off into space, and I just thought, "Oh no." Sure enough, he started having seizures a minute later, and they didn't stop for 36 hours. Eddy generally has between 30 and 50 seizures during the 24-36 hours that they occur. At this point, we know his pattern, have rescue meds in-house, and just buckle up and deal with them until they're over. Like I said, it's my least favorite thing in the world, it causes more anxiety than anything else for me, but it's a part of life that we have just learned to deal with. 

Most of the time, though, Eddy is doing great. He's happy. He's fun. He can communicate with me. Three and a half years ago, when I last wrote a blog update, Eddy was on Journal #1. Everything we talk about with his letter board, all academics we do, all poems, all communication goes into his journal. We are now on Journal #16! Here's a picture of his journals!

These are worth more to me than gold, as it's an incredible glimpse into Eddy's brain. The gift of communication was one I wasn't sure we were going to ever receive with Eddy, and I will never take the letter board or RPM for granted. It has allowed me to truly know my son. It allowed Eddy to demonstrate, in 2021 during the pandemic, that he understood the theology of the Eucharist (and a lot more! This kid loves theology and religion), and he received his First Communion at Mt. Irenaeus from our dear friend Father Dan Riley. As you can imagine, there were a lot of happy tears that day, as we didn't know if it was something we would ever see. The gift of communication has opened up the world for Eddy, and for us as a family. We still pray every day that he will someday talk, but we are thankful that we are able to have this pathway into Eddy's world.

Eddy's favorite word to spell on the letter board is "great," and that's exactly how he's doing. He's growing like a weed. He's getting stronger. He can run now, albeit slowly. He is clever and funny and kind and sweet and an absolute joy. He is happy virtually all the time. He is the purest soul I know. This kid truly has made the world a better place. We are so so lucky he is ours. ♥️