2018 was not a great year for seizures for Eddy. It definitely could've been worse, (as is typical for most things in life), but I do miss the years we could declare that Eddy was "1 year seizure free" and "2 years seizure free." The good news is, we're coming up on six months seizures free next week. So the last six months have been good, but the seizure episodes before that were terrifying. So terrifying that I couldn't even bring myself to write an update, because that would've required me to think about it. I still don't want to think about it now, but it's been almost six months since the last so it's not quite so raw.
In my last blog update, I talked about how terrible Eddy's seizure episode the previous January had been. His first seizure started in the bath tub, and it triggered a lot more. After that episode, he was doing well for about five months, then he had another seizure in June while taking a bath. We had previously thought that Eddy's seizures were triggered by water being poured over his head, but we stopped washing his hair in the bath, and he still had a seizure. So we stopped giving him baths at all for the rest of the summer. He was sponge-bathed and just never set foot in a bathtub.
Then, on October 6, when I was celebrating my birthday with my friends, Ed tried to give Eddy a bath. He thought that if he was very gentle and didn't pour water on his head, he would be ok. I mean, a bath is pretty important for kids, and it would be great if we could go back to bathing Eddy. He thought maybe it was just a fluke the previous couple of times. But, sure enough, Eddy had a seizure while in the bath tub, and I got a phone call to come home. As soon as I saw my husband's name on my phone, at 9 am when I was with my friends, and one had just flown in from Texas for the weekend, I knew. I knew Eddy had had a seizure. I threw my stuff in my bag, got in my car, and drove home as fast as I could, crying the entire time. I knew what was coming.
The really scary thing about the last three seizure episodes, is that the bathtub triggers one seizure, but they don't stop. For 36-48 hours. They just keep happening. So Eddy went from having no seizures for months, to the bathtub triggering THIRTY seizures in a two-day span in June and THIRTY-THREE seizures in a day and a half span in October. And both times we gave him rescue medication (which we had increased the dosage of after last January) twice, and they still didn't stop. I can't even begin to describe how terrifying, disheartening, and exhausting it is to watch your non-verbal child have that many seizures in the course of such a small amount of time and not know if or when they will stop.
In June, when his seizures wouldn't stop after the second dose of rescue-meds, we drove Eddy to the ER, and they transported him by ambulance to Rochester, where he stayed overnight for two nights. It was just an absolutely horrible few days. I remember sitting in the ambulance with him in the middle of the night, holding his hand and looking at his poor, exhausted, sleeping face and thinking, "I was so hopeful that we would never be riding in an ambulance together again." After celebrating two years of seizure freedom when he was four, I really thought that we had gotten through the worst of the seizures.
In October, when Eddy's seizures wouldn't stop with two doses of rescue meds and an extra dose of Keppra, and he was having tonic seizures every three minutes in the middle of the night, we also took him to the ER. Ironically, and thankfully, his body decided that it was done seizing, and after 33 seizures, the 33rd of which was in the car on the way to the ER, he didn't have any more. We spent four hours watching him sleep in the ER and drove home in the morning. Eddy had a neurology appointment already scheduled for two days later, so we drove to Rochester for that and stayed in a hotel with the kids. Eddy spent the rest of the week resting, getting all the meds out of his system, and trying to get back to himself. He went back to school the following week, but it definitely takes several weeks after an episode like that for Eddy to get back to where he was previously.
The really terrifying thing about Eddy's apparent "new normal" with seizures is that he has at least thirty seizures. That's insane. Before last January, we only had to give rescue meds a couple of times, but it always stopped his seizures immediately. Now it's like it doesn't even touch them. These new seizure experiences have been worse than any of the other ones in the "beginning," when Eddy was a baby and we were in and out of the hospital for months trying to figure out what was going on. Even though they aren't happening as frequently (which is certainly a huge blessing), when they do happen, we can't get them to stop.
And this is why I have a lot of difficulty writing about it, or even thinking about it. Before right now, I haven't even thought about seizures in months. I push it out of my mind because when I think about it, I get a pit in my stomach and can't breathe and I finally understand what people who have anxiety feel like. I've been very fortunate to not have previously experienced anxiety in my life, but when it comes to Eddy's seizures, I definitely have it. And it doesn't leave immediately after I know Eddy is ok. I feel anxious and on edge for at least a month after these seizure episodes. And now that we have the girls, and they are old enough to know what is going on, it's that much more difficult. Having a brother with seizures and autism has definitely introduced them to experiences and emotions that many other five year olds have not had. I think seeing differences and learning empathy and compassion is so important for them (and for everyone), but I really wish I could put them in a bubble when Eddy has these episodes so that they don't have to see him or see how it tears me up. Luckily, as usual, my parents were there every step of the way with us and took the girls overnight both times. I honestly don't know what I'd do without them in these situations.
So that's the deal with the seizures. The good news is, if we don't bathe Eddy, he seems to be ok! So we are basically never bathing him again. Haha. No really. Never again. I will never ever put Eddy in a bath again. When we went to Paris and Sardinia last August to celebrate our ten-year anniversary, and our awesome babysitter Tayler was here with the kids, I'm sure I annoyed her with the number of times I said, "Just make sure you don't give him a bath!" I'm sure she was thinking, "Um I know, that's the last thing I will ever do," but I still felt the need to say it...a lot of times.
It's the weirdest thing, and I've never heard of another situation where a person could not take a bath because it causes seizures, but as Eddy's neurologist said, everyone has a different trigger and epilepsy is a strange thing. So Eddy's trigger now is the bath tub. Ed took him swimming in Grandma and Grandpa Bysiek's swimming pool a few times last summer, and he was ok (I was not there because I was way too nervous at the thought of Eddy being in water), but he can't take a bath. I don't understand it and I never will understand it, but I will just keep doing my best to protect Eddy and keep him safe and happy.
And he really is happy. He's the sweetest, happiest little guy in the world. He wakes up with a smile every day. He still loves singing his favorite songs, his train, ABCs, cuddling, reading books, and his iPad. He wasn't getting ABA therapy for months with the agency we used for a year and a half, so we ended our relationship with the agency in January, and thanks to some really awesome people, we started a home-based independent ABA program for Eddy. We just got it off the ground a couple of weeks ago, and we have three women who come every week and work with him after school. One is the Autism Specialist in our area district, and she is a BCBA, certified in ABA. Karen is doing us a huge favor to get this program off the ground, get the goals in place, and train the other two ladies on how to track the data and do the ABA therapy, and she is actually working with Eddy twice a week. We appreciate your help more than you know Karen! We also have Lexie, an amazing teacher who has worked with Eddy a lot in the past when she was in college. Eddy works so well for her and we are so fortunate to have her work with him again. We just added a student from St. Bonaventure who is excited to learn ABA and work with Eddy. It's a great team, and I'm glad that Eddy is getting home therapy again. He makes so much more progress when he is getting a lot of ABA therapy. It was tough with him not getting any therapy for months, but I can already see a difference in just a couple of weeks of starting the new ABA program.
The biggest goal right now for Eddy is the same thing it was a year ago, and the year before that, and the year before that. We need an effective communication system. I still pray every day that he will talk, but at 7.5 years old, it's seeming to be less and less probable. But still, with God everything is possible, and so Eddy and I pray together every night, that he will start talking soon. But even if he doesn't speak, we need a better way to get him to communicate. The picture card system worked to show us he understands the concept of communication. He effectively can hand us a picture card and tell us what he wants. What he can't do is tell is what's wrong when he's crying. It's so rare that Eddy cries that when he does I know something is very wrong. At this point, if it's not obvious, I have to tear off his clothes and try to see what is wrong. When there's nothing obvious, it's scary and frustrating because he can't tell me. Last summer, we were hanging out in his room reading books, and all of a sudden he went from smiling to screaming and crying. I freaked out and took off his shirt, and when I moved him I saw a hornet on his carpet, and he had a huge red spot on his back. The poor kid was stung in his own room! And if I hadn't seen the hornet, I would've had no idea what was wrong. It's just so incredibly tough to not know what he's thinking and feeling and what's bothering him. My dad bought Eddy an adaptive keyboard for Christmas, and one of the goals in therapy is to get him to start typing consistently on it. We're really hoping we can get him to effectively communicate his wants and needs in the near future, whether by typing or finding an effective assistive technology device. He's SO smart and there is so much in that brain, but we have to figure out how to get it out of his brain. I'm constantly telling Eddy that I know he's always thinking and I wish he could tell me what he's thinking about, and he'll just look me in the eyes and smile. He knows that I know how smart he is. Too many people assume that because he can't speak, he doesn't understand and he's not intelligent, but that is just completely incorrect. Please try to never make assumptions with people with special needs. Or if you must, assume that they understand you, treat them like you would anyone else, and show them respect and kindness.
This world really needs so much more kindness. I've been pretty disheartened lately by social media and the rudeness of so many people. The problem with social media is that people can hide behind their computer and act like tough guys and gals and just say inconsiderate things to others. I'm always asking myself if that person would have the courage to say that same comment if they were face to face with the person, looking him or her in the eye. Our country is so divided right now, and I think that the anonymity and impersonal nature of social media makes it easy for people to have lots of opinions and not a lot of compassion. I love the positive aspects of social media (babies, smiles, friends, kindness, interesting news articles, puppies, etc.), but it seems like the negative aspects (ignorant opinions, black-or-white statements when there's a lot of gray area, being unwilling to discuss anything civilly) are starting to take over. So I guess I just hope that this changes, and people can go back to sharing cute pictures of babies and puppies and being willing to have civil discourse regarding important topics. To provide one example, as a mom of a child with autism, the statement, "I would rather my kid have autism than measles" is extremely inconsiderate and hurtful. I don't normally unfriend people on Facebook, but this comment will get an immediate "unfriend" from me. Would I rather have my kid get an illness that my parents' generation all got, where you have a rash and a fever for less than a week, OR a life-long disorder where my child can't speak to me, struggles with gut problems, and has seizures, which 40% of people with autism have? It's not even a question. So before you share comments like that, please consider how it might make someone else feel. Consider that your opinion might be incorrect. Share love, compassion, and kindness. Let's see how we can build each other up and come together instead of furthering the continued division that is all around us.
I just needed to throw that in there because it's been on my mind a lot lately. I really pray that our world can become more united, and that we can regard each other as humans with legitimate feelings, opinions, and histories.
I am so thankful for the family that I have and the life I've been given. I am so blessed to have a husband who walks through this journey every step of the way with me. Parents of special needs children have a divorce rate at over 80%, and I think it's because it's so easy to get on different tracks with so much to deal with. Spouses often have very different ways of dealing with special needs, and as a result, they lose track of the essence of their relationship. My husband has shown me a side of him that I didn't even know he had, an emotional toughness that allows him to grind through the challenging times. When Eddy has seizures, Ed is a rock. He calms me down and helps me know it will be ok.
Having a child with autism has opened my eyes up to so much and has been the single greatest teacher for me. I've learned more about myself by going through these experiences with Eddy in the past seven years than I had in my 28 previous years combined. Eddy has taught me so much about love, compassion, empathy, faith and understanding. There is a lot I still don't understand, but I am trusting in God and thanking Him for giving me this little boy. I'm praying that this year will be a great one for his communication, and we can all finally see what's in that adorable head of his very soon. I know he's going to have a lot to say.
So that's the deal with the seizures. The good news is, if we don't bathe Eddy, he seems to be ok! So we are basically never bathing him again. Haha. No really. Never again. I will never ever put Eddy in a bath again. When we went to Paris and Sardinia last August to celebrate our ten-year anniversary, and our awesome babysitter Tayler was here with the kids, I'm sure I annoyed her with the number of times I said, "Just make sure you don't give him a bath!" I'm sure she was thinking, "Um I know, that's the last thing I will ever do," but I still felt the need to say it...a lot of times.
It's the weirdest thing, and I've never heard of another situation where a person could not take a bath because it causes seizures, but as Eddy's neurologist said, everyone has a different trigger and epilepsy is a strange thing. So Eddy's trigger now is the bath tub. Ed took him swimming in Grandma and Grandpa Bysiek's swimming pool a few times last summer, and he was ok (I was not there because I was way too nervous at the thought of Eddy being in water), but he can't take a bath. I don't understand it and I never will understand it, but I will just keep doing my best to protect Eddy and keep him safe and happy.
And he really is happy. He's the sweetest, happiest little guy in the world. He wakes up with a smile every day. He still loves singing his favorite songs, his train, ABCs, cuddling, reading books, and his iPad. He wasn't getting ABA therapy for months with the agency we used for a year and a half, so we ended our relationship with the agency in January, and thanks to some really awesome people, we started a home-based independent ABA program for Eddy. We just got it off the ground a couple of weeks ago, and we have three women who come every week and work with him after school. One is the Autism Specialist in our area district, and she is a BCBA, certified in ABA. Karen is doing us a huge favor to get this program off the ground, get the goals in place, and train the other two ladies on how to track the data and do the ABA therapy, and she is actually working with Eddy twice a week. We appreciate your help more than you know Karen! We also have Lexie, an amazing teacher who has worked with Eddy a lot in the past when she was in college. Eddy works so well for her and we are so fortunate to have her work with him again. We just added a student from St. Bonaventure who is excited to learn ABA and work with Eddy. It's a great team, and I'm glad that Eddy is getting home therapy again. He makes so much more progress when he is getting a lot of ABA therapy. It was tough with him not getting any therapy for months, but I can already see a difference in just a couple of weeks of starting the new ABA program.
The biggest goal right now for Eddy is the same thing it was a year ago, and the year before that, and the year before that. We need an effective communication system. I still pray every day that he will talk, but at 7.5 years old, it's seeming to be less and less probable. But still, with God everything is possible, and so Eddy and I pray together every night, that he will start talking soon. But even if he doesn't speak, we need a better way to get him to communicate. The picture card system worked to show us he understands the concept of communication. He effectively can hand us a picture card and tell us what he wants. What he can't do is tell is what's wrong when he's crying. It's so rare that Eddy cries that when he does I know something is very wrong. At this point, if it's not obvious, I have to tear off his clothes and try to see what is wrong. When there's nothing obvious, it's scary and frustrating because he can't tell me. Last summer, we were hanging out in his room reading books, and all of a sudden he went from smiling to screaming and crying. I freaked out and took off his shirt, and when I moved him I saw a hornet on his carpet, and he had a huge red spot on his back. The poor kid was stung in his own room! And if I hadn't seen the hornet, I would've had no idea what was wrong. It's just so incredibly tough to not know what he's thinking and feeling and what's bothering him. My dad bought Eddy an adaptive keyboard for Christmas, and one of the goals in therapy is to get him to start typing consistently on it. We're really hoping we can get him to effectively communicate his wants and needs in the near future, whether by typing or finding an effective assistive technology device. He's SO smart and there is so much in that brain, but we have to figure out how to get it out of his brain. I'm constantly telling Eddy that I know he's always thinking and I wish he could tell me what he's thinking about, and he'll just look me in the eyes and smile. He knows that I know how smart he is. Too many people assume that because he can't speak, he doesn't understand and he's not intelligent, but that is just completely incorrect. Please try to never make assumptions with people with special needs. Or if you must, assume that they understand you, treat them like you would anyone else, and show them respect and kindness.
This world really needs so much more kindness. I've been pretty disheartened lately by social media and the rudeness of so many people. The problem with social media is that people can hide behind their computer and act like tough guys and gals and just say inconsiderate things to others. I'm always asking myself if that person would have the courage to say that same comment if they were face to face with the person, looking him or her in the eye. Our country is so divided right now, and I think that the anonymity and impersonal nature of social media makes it easy for people to have lots of opinions and not a lot of compassion. I love the positive aspects of social media (babies, smiles, friends, kindness, interesting news articles, puppies, etc.), but it seems like the negative aspects (ignorant opinions, black-or-white statements when there's a lot of gray area, being unwilling to discuss anything civilly) are starting to take over. So I guess I just hope that this changes, and people can go back to sharing cute pictures of babies and puppies and being willing to have civil discourse regarding important topics. To provide one example, as a mom of a child with autism, the statement, "I would rather my kid have autism than measles" is extremely inconsiderate and hurtful. I don't normally unfriend people on Facebook, but this comment will get an immediate "unfriend" from me. Would I rather have my kid get an illness that my parents' generation all got, where you have a rash and a fever for less than a week, OR a life-long disorder where my child can't speak to me, struggles with gut problems, and has seizures, which 40% of people with autism have? It's not even a question. So before you share comments like that, please consider how it might make someone else feel. Consider that your opinion might be incorrect. Share love, compassion, and kindness. Let's see how we can build each other up and come together instead of furthering the continued division that is all around us.
I just needed to throw that in there because it's been on my mind a lot lately. I really pray that our world can become more united, and that we can regard each other as humans with legitimate feelings, opinions, and histories.
I am so thankful for the family that I have and the life I've been given. I am so blessed to have a husband who walks through this journey every step of the way with me. Parents of special needs children have a divorce rate at over 80%, and I think it's because it's so easy to get on different tracks with so much to deal with. Spouses often have very different ways of dealing with special needs, and as a result, they lose track of the essence of their relationship. My husband has shown me a side of him that I didn't even know he had, an emotional toughness that allows him to grind through the challenging times. When Eddy has seizures, Ed is a rock. He calms me down and helps me know it will be ok.
Having a child with autism has opened my eyes up to so much and has been the single greatest teacher for me. I've learned more about myself by going through these experiences with Eddy in the past seven years than I had in my 28 previous years combined. Eddy has taught me so much about love, compassion, empathy, faith and understanding. There is a lot I still don't understand, but I am trusting in God and thanking Him for giving me this little boy. I'm praying that this year will be a great one for his communication, and we can all finally see what's in that adorable head of his very soon. I know he's going to have a lot to say.
