The device has proven to be a great communication tool for Eddy. He tells us when he needs to use the bathroom. He let's us know when he wants to read a book and when he wants to sing a song. One time this summer, my husband and I were talking about going to a new coffee shop in town (it's called Rocket Cup and it's a wonderful cafe and coffee shop in Olean - check it out)! Eddy was working with Marissa, and he somehow navigated through four pages of the Proloquo Device and found "coffee shop." He was communicating that he wanted us to wait to go until he was done with speech therapy, and he came with us to the coffee shop! When we dim the "I want to sing" button and make it so he cannot touch it because he requests it so much (the boy loves to sing his favorite songs), he creatively finds new ways to tell us what song he wants to sing on the device. (For example, he found the shape page and touched "star" when he wanted to sing "Twinkle Twinkle Little Star," and he navigated to "bus" when he wanted to sing his favorite, "Wheels on the Bus.")
Moving on to my least favorite topic - seizures. Last year was the best year regarding seizures in many years. Eddy went 14 months with no seizures - from May 2023 to July 2024. Since July, though, Eddy's seizures have been the worst they have been since he was a baby. He had over 50 seizures over the course of 36 hours a few days before his birthday in July. Then in September, he had one (very bad) seizure. In October, he had over 50 seizures in 48 hours. Then at the end of November, he had over 30 seizures over the course of 36 hours. These were all very scary and there seemed to be no trigger (although Eddy's barber commented that they all happened right after he got his haircut, which is an interesting coincidence. Perhaps haircuts are a new trigger?) You will see in all of my Bahamas pictures now that Eddy's hair is longer - I did not want to chance it right before we left with a haircut if it is, in fact, a trigger. Anxiety is definitely a seizure trigger and maybe haircuts now produce anxiety. We just don't know.
The oddest and arguably scariest seizure actually happened a few days ago. One of my biggest fears was realized when Eddy had a seizure in the Bahamas. I brought a lot of rescue meds and extra seizure meds if it happened, so I thought I was prepared, but he had a seizure when we were on a very remote beach over an hour away from our condo. Eddy was SO happy right before it happened. He was running on the beach with his daddy (who is the only person who can get him to run).
He independently let us know he had to use the bathroom by walking up to trees in a remote area and going by himself. He earned his iPad by doing this, so I put the towel down that I had brought, cuddled him up to me, gave him is iPad, and enjoyed being with him on the beach. Ed, Eddy's sisters, his Uncle Matt, and his grandma and grandpa continued to walk up the beach. It was during Eddy's nap time so I told them to go ahead, and I would rest with him because I knew he was tired. We were having a beautiful moment when, all of a sudden, Eddy started having a grand mal seizure out of the blue. I was terrified because 1.) the seizure was bad, 2.) we were alone on a secluded beach a mile from the car, where his rescue meds were, 3.) there was little cell service, and 4.) my phone was at 3%. I called my father-in-law, who luckily answered, and I said that Eddy was having a bad seizure and Ed needed to get to me fast. He yelled to Ed, who was up ahead on some rocks with the girls, and Ed sprinted almost a mile to us on the beach. At this point, the seizure luckily stopped on its own. (It lasted 2 minutes, but it felt like 20 minutes. I just kept thinking, "I don't have his rescue meds. What if this doesn't stop?") Eddy passed out after the seizure, and we had to carry him a mile on the beach back to our car. I can't even describe how difficult this was, even with Matt, me, Ed, and my father-in-law. Eddy is 110 pounds now and it was basically carrying dead weight. Thank God, he only had that one seizure. I don't know why his seizures have increased, but it most likely has to do with puberty. We have increased his seizure meds twice in the past year, but he has gotten so much bigger, so maybe we need to increase them again. Watching him have seizures completely drains me. I had so much PTSD after he had over 50 seizures in two days back in October. If you pray, please pray for no more seizures.
These photos were taken ten minutes and two minutes before Eddy had a horrible seizure on the beach. 🥹Now back to something positive😊… Eddy is the happiest kid in the world in the Bahamas. He bounced back from his seizure in less than 24 hours. He is so smiley, content, joyful, clever, and witty here. He has been communicating with me so well on the letter board in the past couple of weeks. He loves golf cart rides and beach walks and lying out by the pool. Just look at this picture:
I asked Eddy what he thought about the trip after we were here for a few days. He spelled, "Mommy, I am happy, great, and I believe that I should live here. Really on top of the world. Quote me, I finally feel so totally relaxed." I asked him what it was about the Bahamas that made him feel so good, and he spelled, "I am just happy here." I love seeing him so much in his element.
Now moving on to the school front. Eddy is still attending the same special needs school that he has been attending for the past two and a half years. The overall vibe and feeling of acceptance at this school is great. Eddy is happy there, and that is the most important thing to me. One frustrating constant that is true as a special needs parent (every special needs parent that I have talked to will agree) is that we need to fight for everything. And it's exhausting. We have to fight with insurance companies to get things we need. We have to fight with schools to get basic and necessary therapy. I just want Eddy to be given the things that he needs and not have to fight for them. I'm sick of fighting for everything.
Specifically, Eddy needs more Occupational Therapy. He is 13 years old, and he cannot dress himself. He can't put a shirt on or take a shirt off. He can't independently put his pants on. These are basic life skills that he needs to be able to do. He was learning how to dress himself when he was receiving more OT in the past. Eddy has very weak hands, and fine motor skills are difficult for him. This is why in June, Ed and I called an emergency CSE meeting to request an increase in his OT at school. I tried getting OT at home through his Self Direction Budget, but I was told that they assume Eddy is getting all the therapy he needs in school, and therefore we cannot use his budget for it. The only problem is, he isn’t getting all the therapy he needs in school. At the meeting in June, Eddy was given one more 30 minute OT session per week. Not a significant amount, but better than nothing. During his yearly CSE meeting (Committee on Special Education) right before Christmas, they tried taking away this one 30 minute OT session, despite the fact that Eddy’s triennial OT assessment demonstrated that he has regressed in fine motor skills in the past three years. Typically when a child regresses, he or she is given MORE therapy, not less. It was a very contentious two and a half hour meeting, and honestly I’m just so tired of having to fight for everything that Eddy needs. Being a parent of a child with special needs is exhausting, emotionally, physically, and mentally. But I will never ever stop fighting for that boy. Not until the day I die. (And then I’ll probably continue fighting from the after life, knowing myself. 😅)
All things considered, Eddy is doing great, especially here in the Bahamas. Just seeing him so incredibly happy makes me want to come here more often. There is something about the beach and the ocean and the outdoors that makes this boy (and his mommy) thrive. We’re blessed to be able to enjoy this time together.
Being a special needs parent continues to be a rollercoaster ride. But I am so grateful to have a happy, normally healthy, incredibly sweet boy. We have such an amazing support system; thank you to each of you who have shown empathy, love, and support for Eddy. We couldn’t do it without you. 🩷