Eddy in Kindergarten

I can't believe it's been ten months since I've written a post; it feels like yesterday. I've been wanting to write for several months now, but it's more nuanced to pen "normal' life than it is to write about sickness and hospital stays. Since my last post on New Years Day, Eddy has had more seizures, but they were last February, nine months ago, and he had pneumonia. So, at least there was a clear-cut reason, unlike the seizures that occurred last September. His seizures in February were similar to the ones that he had in September; they were horrible tonic-clonic (grand mal) seizures that required a rescue seizure drug to stop. An ambulance was called and we were in the ER for an evening. But luckily he improved, and thank God, he has been seizure free for the past nine months.

 Right now, Eddy is doing SO well. He started kindergarten in an inclusive classroom in September. It was a stressful spring and early summer, knowing there was a transition that had to occur now that Eddy was almost school-age (He turned 5 in July!). My Masters degree is in Inclusion (Advanced Inclusive Processes), and I know and understand the benefits of inclusion, not just for Eddy but for everyone in his class. It's so important for kids to see diversity, differences, and special needs at a young age. Kids are kind and compassionate and understanding when they're 5; this isn't the case as much, unfortunately, when they're 10. But if kids see differences at a young age, and when they learn that differences are "normal," they will be less likely to bully and more likely to include these kids when they're older. Inclusion is also hugely beneficial for the student with special needs. So much research has shown that when students are held to high standards, they will be more likely to achieve growth and success. I could go on and on about the benefits of inclusion, but suffice it to say that I was very determined to do everything I could do to get Eddy into an inclusive kindergarten class. I am very thankful for a couple of my grad professors from St. Bonaventure, whom I met with before any of the meetings with Eddy's school, and who encouraged me to push for inclusion. I was confident that Ed and I were making the right decision when we met with the principal and Director of Special Education, and later when we met with the whole CSE team (for over six hours!). So when it was finally decided that Eddy was going to be in an inclusive kindergarten, with all of the supports in place (including speech, occupational, and physical therapy, a one-on-one aide, and a pull-out resource room time at the end of the day), we felt incredibly relieved, but nervous for him to actually start school.

When September rolled around, we became more and more nervous, but on the first day of school, when we got Eddy off of the van, he had the biggest, most alert smile that I had ever seen from him. I could tell how happy he was. And he's only gotten happier. Eddy loves school. Eddy loves his one-on-one aide, Kiki. Eddy loves his teacher and his special education teacher and everyone at his school. Eddy is one of the most popular kids in his class. During our first team meeting a few weeks ago, when his teacher told us that Eddy is the best behavioral incentive because when classmates are really good, they get to sit with him during math circle time or during lunch, I started crying. When Ed and I met his class at Allegany State Park for a field trip last Friday and we were able to see first hand how much his classmates love him, and how they sing him the ABC song because they know he loves the alphabet, I started crying. It is so incredibly refreshing to see compassion and love from 5 year olds, especially when that compassion and love is directed at your nonverbal child with autism. I am 100% sure that we made the right decision by sending Eddy to our home district, in an inclusive classroom. We are so thankful that the school has been so accommodating and helpful. To see others love your child results in a happiness that is indescribable.

Before having Eddy, when I saw a mom or dad with a kid who had special needs, I would feel sorry for them. Not consciously, but subconsciously, and I think a lot of people do that. I don't know the situations of everyone else, but I can tell you with complete sincerity, you do NOT need to feel sorry for us. We are the luckiest parents on earth to be able to parent Eddy Bysiek. This kid is incredible. He is absolutely the sweetest person I have ever met, and I honestly don't know how we got so lucky.

We still pray every day that he will talk, and we want to bring him more into our world, but we are so thankful for the exact little boy that he is. I think that a lot of acceptance has occurred in the past year. Eddy has made it awfully easy, as such a happy, loving, sweet boy. Our daily life is still a lot more complicated than we ever thought it would be, from Eddy's ketogenic diet where everything is measured to the tenth of a gram, to the vast supplements that we have to make sure he gets every day to keep him healthy, but it has become our "normal," and if it means Eddy is healthy and happy, we will do it a million times over.

To say that Eddy is a joy is an understatement. Eddy is the happiest little boy I've ever seen. He is all smiles. He is all love. He is all joy. He is an incredible blessing. He's the purest definition of innocence and love that I've ever come in contact with. In a time of bitterness and strife and divisiveness, where Americans are fueding and arguing and bullying, Eddy is the definition of love and kindness and everything that is good in the world. Every morning, he wakes up with a smile, and every evening, he goes to bed with a smile. I just can't believe how lucky I am to be his mom.