Monthly Archives: October 2017
Hey friends! It’s been awhile, I know…we closed out the summer having a lot of fun as a family before the fall rolled around. This fall season, though, brings with it a very exciting time for Nolan: SCHOOL!
Yes, Nolan is finally getting back into school. After his Fontan surgery last year, preschool was a struggle for Nolan: his recovery was fairly slow-going and it was tough for him and his teachers too – and I’m absolutely not speaking ill of them at all. I think they wanted to do the best for Nolan and Nolan was trying his best, too, but we often got calls worried about Nolan looking too tired or too lethargic. So in order to let him have a restful Fontan recovery, we decided to pull him out of preschool and let him do his thing at home. Sure enough, things started to turn around for our little man and now he’s our jumping, silly little boy once again.
We decided to apply for an early-childhood preschool program through our local public school system. Our oldest – Hudson – was in the same program when he was in pre-k and they did a fantastic job of preparing him for what school would be like when he started kindergarten, and we wanted the same experience for Nolan. Nolan did get accepted to the program and we were super happy, but this was the easy part…the next part would by trying to work with the school to create the best atmosphere for Nolan: there are a few minor physical things they’d need to be aware of (taking time going up stairs, not going too hard on the playground) and medical things too (his g-tube and any oral feeding we’d like to have done at the school).
I have to admit, I was really nervous at first because I didn’t know whether the school system had the knowledge or capability or willingness to work with a kid like Nolan. He’s not difficult by any stretch, but as you can imagine you always want your heart warrior looked-after in the best way possible. This is where my wife showed her absolute awesomeness: she reached out to them and started the process going: they asked for all sorts of records and names of his care providers and sent him for several different evaluations, including PT/OT and neuro. They were very thorough and held a call with their entire team present where they discussed how they evaluated Nolan, what they felt his needs were, and how they would be meeting those needs in school by developing an Individual Education Plan (IEP) for him. I was so impressed…no lie…it was like they knew Nolan for his whole life and were completely confident that Nolan was going to get everything he needed in the school setting. He’d get his PT and OT right there in the school and the staff will work on whatever feeding schedule we wanted him on. WOW. The next meeting was with the school nurse to go over his needs and care, The school basically let us drive the ship, if you will…we could decide how long he could go to school, what he does and doesn’t do, etc. I was really, really impressed.
So while the school day is something like 6 hours long, we decided to start him at 3 hours per day, Tuesday-Friday, just to see how he does. All the while we were completely hyping up school to Nolan…he was getting really excited because , after all, his brothers go to school so why not him? One day my wife took him to the school to go meet his teacher and while I couldn’t be there, it went in normal, hilarious Nolan fashion. First they stopped in the office and apparently Nolan thought this was supposed to be the super-cool class we were talking about. He had other thoughts. He looked around and said to my wife, “Well this is disappointing.” LOL This kid!
His teacher was excited to meet him and was prepared to have him in the class, which consisted of about 13 kids, half of which were on some form of IEP like Nolan. The teacher would also have an assistant in the classroom. We took Nolan to open house and he was so happy to explore his room and to discover that the class had a coconut tree toy from Chicka Chicka Boom Boom, which is his favorite book of ALL TIME. ]
So finally we were all ready to go: we had a feeding schedule down for the staff, the hours he’d be attending school, we already saw everyone there was to see….all we needed next was the first day of school…….UNTIL.
Yes…in true Nolan fashion, he caught a cold the weekend before the start of school. I was like:
So since colds last a really long time in Nolan’s world, he naturally missed his first days of school…and second…and third. And then finally, the Friday of his first week of school….he was feeling way better and the big day arrived!
I took the morning off work so that I could be there for this special day (I always want to take all my kids to their first day of school)…and man it was just awesome:
Look at that happy little Whiz Kid! He was so happy to be going to “big boy school” and it was just such a special moment to pull up and walk him in with that ginormous backpack:
For me it was such a big, moving moment. I was brought back to that time many years ago, where I’d walk into an ICU room and look at my little baby in the fight for his life. And I would hope he’d make it….then I’d hope he’d sit up….then I’d hope he would walk…and now…here he was a strong 4 year old walking into pre-k like a big boy. And I couldn’t be more proud of my superhero.
We walked him to the class and he greeted his teachers with a hug and was immediately enthralled with the goings-on in the room. There was playing! And he didn’t want to miss out, so he gave us a kind-of “go away now” wave and then he was off with his teacher to wash hands and go explore.
In this life we live, we’re used to all kinds of handoffs: handing your child over to the surgery team – multiple times – in order to save their lives, sitting awake at 7am as your night nurse hands off to the day nurse and you hope this one’s just as good as all the others. This handoff, though, was special: handing him off to his teacher is one more accomplishment in his short life that has been marked by all the battles he’s had to fight. This handoff signified that Nolan is beating the odds!
He’s been doing really well in school: he loves it and comes home singing all sorts of songs he learns there. He’s also been more of a chatterbox since starting school, which I really like. And – as always – Nolan is super silly! We’re looking to lengthen his days there soon and I’m confident he will do an amazing job!
For those of you who are reading this and your kids are getting into school age, I definitely understand how nerve-wracking it can be. Heck just thinking about kindergarten next year gets me a little nervous and he just started pre-k. I’m not pretending to have all the answers (I never do), but all I can say is to explore all your options and know that what works best for other heart kids may not work for yours…and that’s ok! They’re all different in their own awesome ways, so embrace it. But what I will encourage you to remember is that you are your child’s #1 advocate! When it comes to all things – healthcare, education – you’re it…so do that until you feel completely satisfied. Ask questions…LOTS of questions. And then ask them again if you need to. Get your child’s doctors involved. Develop a good IEP plan with your child’s school so that you have all possible bases covered. Finally, be excited for your heart warrior as he or she goes off to school…make it a celebration because it truly is something to celebrate!