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. ♥️

"Nice People are Only Allowed in My White House"

I am so excited to share with you all how well Eddy is doing. As difficult as 2020 has been for so many people and for so many reasons, we will remember this as a period of time that Eddy took off and made immense gains.  And for that, we are very thankful. Although he is not speaking in the traditional sense (yet), Eddy is communicating! For the first time in his life, we can ask him what he is thinking, feeling, wanting, and a lot of the time, he tells us! 

I cannot describe how exciting this process has been. One year ago, we attended a Rapid Prompting Method (RPM) training in Buffalo. RPM is "an academic program leading towards communication, the expression of reasoning and understanding, more reliable motor skills, and greater sensory tolerance"  https://www.halo-soma.org/.  RPM uses a stenciled letter board that Eddy puts his pen or pencil through in order to spell a word. 

When we saw how alphabet-heavy RPM was, we realized that this could be something that really appeals to Eddy. Anyone who knows Eddy well will know that he has been obsessed with the alphabet since he was a toddler. He knew all of his letters and their sounds by the time he was two years old. (His wonderful ABA therapist Ms. Rae discovered this ability before his 2nd birthday.) All of Eddy's favorite things have to do with the ABCs: his alphabet bus, his alphabet train, his alphabet books, and his alphabet YouTube videos on the iPad. 

This really encouraged us to at least try RPM with Eddy. Up to this point, we were very frustrated and disheartened by his lack of progress. Eddy was not meeting his IEP goals that we knew he should be meeting. One was to recognize numbers up to 20. Eddy had been doing this for us since he was two, but he wouldn't consistently show what he knew in school. So Ed and I spent a lot of time last spring discussing the fact that a change needed to be made. Change is not easy, especially when autism is involved, but we knew Eddy was capable of so much more. We knew he was smart, and we knew that we needed to find a way for him to communicate and demonstrate his capabilities.

After the training in June, we bought a letter board, and Eddy took to it very quickly. He wanted to poke the pen through the letters as we sang the ABCs all the time. He started spelling words soon after. Getting "open communication," which is the end-goal of Eddy answering questions about how he feels, what he wants, what he's thinking, etc., is a much higher level than him spelling "mommy" or "cat," and it is much more difficult to achieve. We really wanted to communicate openly with Eddy, but everyone we had spoken to about RPM (shout out to the wonderful ladies at Buffalo RPM!) let us know that it could take years to develop open communication. But we worked with Eddy on the letter board every few days, and he seemed to enjoy it.

We heard that Soma, the creator of RPM, was coming to Buffalo in September to give a presentation and to individually work with students in private sessions. We were so lucky to secure two time slots for Eddy, and on September 20, we took Eddy to Buffalo to work with Soma. She had created the method to help her nonverbal son, Tito, back in the late 90s, and after moving from India to the US in 2001, Soma has been working here with individuals who have autism ever since.  

Because RPM requires the ability to spell words, Soma recommends that students learning the method are at least eight years old. Eddy turned eight last July, and so it was the perfect time to start learning RPM. During the first session, Soma was very complimentary and said to Eddy, "I can tell your mom has been working hard with you." I felt great to receive the compliment from Soma, but really it was just that Eddy had taken to spelling words so quickly. It definitely helped that he loved letters, and he had been watching academic (alphabet, numbers, colors, shapes, etc.) YouTube videos for years. 

At the beginning of the second session about an hour later, I asked Soma how to achieve open communication. She demonstrated how to start and gave us some helpful guidance. It was during this second session that Eddy gave his first-ever open communication. Soma asked him what his favorite time of day was, and Eddy spelled "morning." Ed and I looked at each other with tears in our eyes. Eddy really does love morning and is always so happy when he wakes up, and we saw him answer the question with our own eyes. She then asked what his favorite zoo animal was, and he spelled "monkey." It was the beginning of an incredible journey into our sweet little boy's brain.

Since September, Eddy has flourished. He started in an autism 6-1-1 classroom at a new school. Even though he had only been in his new school for a couple of weeks, his teacher and speech therapist (as well as an ABA therapist and autism specialist who worked with Eddy in our home) all took the day off of work to come to Buffalo and watch Eddy's sessions with Soma. That is dedication. We have been so blessed this past year to have people go above and beyond and express initiative to learn new methods, if it means that it will help our boy communicate. We will forever be grateful for the team that we have in place, as they love Eddy and truly want to see him succeed.

The transition to a brand new school, teacher, and environment went surprisingly smoothly. Eddy loved school this year. When I asked him in March if he was happy to be home (and I really thought he was going to spell "yes," because he had been so happy all the time), he spelled, "I miss school. I love my teacher Miss Courtney." This made me so happy because I never again had to guess if he liked going to school every day or if he was scared. He has been Zooming with his teacher and therapists every week, and he loves seeing them.

Through talking with Eddy using the letter board, we have discovered these past few months that Eddy is so funny. He has a quirky sense of humor that we had never been able to glimpse. A few examples of when Eddy has made us laugh: 

1.) We were talking last month about how Neil Armstrong spent three hours on the moon. I said, "Eddy, what would you do for three hours on the moon."
Eddy: "Next to nothing." Me: "Why would you do next to nothing?" Eddy: Because there's nothing to do."

2.) We have been working on toilet training, and he was in a very stubborn phase around Mother's Day. (He's been doing great this past week though...say a little prayer that it continues!) He went on Mother's Day, but the next day he wouldn't go. So, we said, "Why won't you go today? You went yesterday!" Eddy: "It's not Mother's Day anymore." 

3.) Sophia (a dedicated teacher who just graduated from St. Bonaventure with her Masters Degree and who works with Eddy every day in our home), was doing a lesson with Eddy and couldn't find the letter board anywhere, even though she had had it a few minutes before. Sophia: "Eddy, where is the letterboard?" Eddy: "Behind the chair. I pranked you so hard. I'm so independent. I can hide things." 

4.) Sophia: "Eddy, when will you get toilet trained?" Eddy: "Monday" Sophia: "Why Monday?" Eddy: "I have no other plans."

In addition to discovering his amazing sense of humor, we've also learned that Eddy hears and absorbs everything we say, he's insightful, and he has a photographic memory. His mathematical ability is advanced. I always knew Eddy was smart, but the level of his intelligence has blown us away.

Communicating with a letter board definitely takes practice. At first, I was the only one Eddy would openly communicate with (and this took months of trying). Then Sophia kept working with him, and they now have full-on conversations. Eddy loves having daddy read him the Bible every night and they have a Bible study using the letter board each morning over breakfast. Eddy often remembers small details from the previous night's passage, he can tell you that he is "Catholic," that "Jesus is the Son of God," and that "Gospel" means "Good News." One particularly poignant conversation recently went like this: 

Ed: "What makes heaven such a good place?"
Eddy: "Eddy can talk there."

For the first time ever, I’m going to end Eddy’s blog with words that Eddy wrote himself. On Saturday, he was communicating so well with the letter board and wanted to talk about how he was going to change the world. This is what he said. As you read it, keep in mind that the first glimpse we got into Eddy’s mind was less than nine months ago. We still pray every night that Eddy will talk, and I realized the other night that God has, in a way, begun to answer our prayers. 💖

 "All I want to see is a very happy world. Someday while I am President, I have to change the world, how about that idea?

 First, I will make racism illegal. Let people in.

 I have an idea, listen to this. Raise awareness about autism. I am so smart.
 Sometimes people that don't know me laugh at me but laugh is not nice. Have more  empathy.

Mommy dreams of a kind world. I do too.

Nice people are only allowed in my White House." 

- Eddy, June 13, 2020 💙