5 Year Anniversary

It was five years ago that Jake had his stroke (and almost a year since I posted an update - yikes)...time really does fly by. In some ways it doesn't seem like it was that long ago and in others it seems like a lifetime ago.

Jake has come SO far since then...he was just a little boy dealing with a horrible medical situation and very dependent on Todd and I. Looking back, I don't know how much of that was our need to want to protect him and run interference vs. his need to be taken care of. Starting shortly after we got home from the hospital, he was resistant to being treated differently from everyone else. He didn't want accommodations being made for him and just wanted to "be normal," but that wasn't always possible. As he's getting older, he's accepting some things need to be different for him, but pushing back where he feels they don't. He's becoming a much more independent, capable young man learning to navigate things on his own.

Since it's been awhile. I'll catch you up a little on what's happened the past year.

Jake started high school in August. He goes to a huge school with over 3000 students. If you asked him how school was going those first few months, he was quick to tell you that it was a 1/4 mile from one end of the school to the other and he had classes at both ends. I'd be lying if I said I wasn't a bit apprehensive about how his transition to high school was going to go. There were so many kids and so much distance to cover, especially for a kid with ambulatory issues. He was given extra time to get between classes and able to pass when there were fewer kids in the halls which really helped (one of the things he realized was a beneficial accommodation for him). He was often wiped out at the end of the day, but he persevered. Jake was in regular grade level classes for all of his core subjects. In 3 of the 4, he was in a co-taught class which meant there was a second teacher who was there to modify classwork as needed. Jake consistently declined any of the modifications that were offered (things such as outlines for taking notes, or spreading questions out on a test to allow for easier visual processing). In fact he not only got through 9th grade, he excelled and in a big way.  He got straight A's all year, was recognized for achievements in Math and Science, invited to join Honors Chemistry next year, and was told he no longer needed to be in co-taught classes. More important than the academics, Jake became more self sufficient and stayed on top of his homework and assignments with almost no input from me. Todd and I could not be more proud of him. 

Jake got his driving permit in December and as you can tell from the picture he was pretty excited. Getting a permit is a big deal for any kid, but with all of his post stroke issues it was a huge milestone for him. He took the initiative to do the 30 hours of classwork study for his permit on his own and passed the test on his first try.  

The first time we took him out driving didn't go well at all.  We unintentionally threw way too much at him and he ended up in tears of frustration. "This stroke has ruined my life!" I was almost in tears because I didn't want his first exposure to driving to go this way. Driving is one of those rights of passage for kids and once again, Jake had added challenges due to his stroke. We calmed him down by telling him driving is complex and we didn't plan his first outing well. We've  broken driving lessons down into smaller steps and it made all the difference. We also got him a turning knob for the steering wheel which eliminates the hand over hand needed for turning (a challenge due to his left hand weakness). His confidence has really improved and he's getting better every time he goes out. We're balancing getting him out on the main roads more with making sure he's safe due to his vision issues.

He's been in vision therapy for the past 8 months working on a number of driving related issues. He's improving how his eyes work together, reaction time, scanning everything around him, and adjusting for his lack of left side peripheral vision. It's a slow and exhausting process but I do think it's helping. This summer he'll have some OT driving sessions to continue helping him figure out what accommodations he needs.

After the success last year, we got Jake snowboarding more this past winter. Eldora's adaptive ski program has been amazing. The instructors are so good at helping where they need to and allowing the students the opportunity to do things on their own in a safe way. They often mirrored Jake and were there to guide or help with a turn if he needed it, but let him do it on his own when he could. We all were really pleased with his progress this season and are looking forward to next winter.

With summer now here, that means time for intensive therapy. As Jake is getting older, we're involving him more in decisions around his therapies. He is definitely sick of spending summers in appointments, so we try to find the balance of fitting things in and free time. Some things he simply has to do, but he does have say in what that schedule looks like in terms of number of appointments in a day and which areas he wants to work on. This summer he's focusing almost all of his therapy attention on his left arm/hand and has chosen to do his PT as a home exercise program instead. He's been really frustrated with how tight his hand is and how that affects his drumming, so that's his goal. We excited to see what improvements can be made with the schedule he's got planned. 

Well this ended up being a much longer post than intended...I guess that's what happens when you don't give updates in several months. 😉