Heartiversary – Also, School

I still can’t believe it has been five years. It hits differently, this year. Seeing all the memories pop up on Facebook, knowing we are nearing another heart intervention.

But I am so thankful he is here.

The last two weeks have been incredibly difficult. Life has been pulling me in millions of different directions, and my plate is overflowing with it all. There is personal stuff – loss, goodbyes, things worth grieving simply because it’s a path I never wanted to be on.

But there is also school. And this time, I don’t mean mine.

Kiran’s general education curriculum is an online curriculum not actually associated with his school district. So far, there is no real teacher interaction, no seeing other students (supposedly, story times are coming). There are just videos and online practice and lots and lots of workbook pages. As in way more workbook pages than I think any kindergartner should have to do. I get it – with everything being online, there has to be some way to assess knowledge. As you can imagine, this is not at all geared toward Kiran’s learning abilities.

And the frustrating thing is, even though I have reached out – twice now – to the appropriate people within the district to get some accommodations for Kiran, all I have been able to successfully do is opt him out of PE and Arts/Crafts. I am still waiting on direction, and the online teacher (again, not affiliated with K’s school district) just keeps telling me she can’t make any changes until she gets direction from the district.

So. I have been doing my best to get creative and make assignments more accessible to Kiran, changing how we do things so he can participate at his skill level. I think I’m pretty good at it, and I just leave notes for his online teacher every time we submit an assignment so she knows how we worked on that particular assignment. My biggest complaint isn’t that I don’t have help with this part – I feel confident I am helping Kiran learn – my biggest complaint is it’s just too much content and too much work for us. I’ll be following up a third time and making some more requests.

It doesn’t help that this is Kiran’s transition into kindergarten and many members of his IEP team are trying to do assessments virtually in order to know how to update his IEP at the end of this month. I have been inundated with forms and questionnaires and interviews and meetings – there is SO much on our calendar for September, especially since all of Kiran’s big waiver meetings happen this month as well.

AND (oh, you thought maybe that was all he had going on!?!) we just started his eye gaze communication device trial on Thursday, so that adds a whole new piece of equipment and goal we must diligently work on.

I have to say – his IEP team members have been amazing. All of the IEP supports and therapies are happening virtually, and I couldn’t be more pleased with how that is going already. Even just almost two weeks in, they are getting to know Kiran and working with me to make the virtual setting beneficial. Between everything they do and everything I am doing, Kiran IS learning. It’s amazing to see, and I am so proud of him.

I’m also exhausted.

I don’t have a lot of grace for myself, and honestly, there have been numerous times these last two weeks that I have wondered why I didn’t just send him to school. Feeling like it’s all too much, I can’t do this…and then he successfully chooses the red marker when asked. Feeling like there’s no way I can help him navigate this new communication device…and he already has success with it during our first virtual session with his school SLP.

Feeling like what if he’s not learning as much as he would have had I sent him…and then thinking what if he wasn’t here to learn at all if I had sent him? Today, on his fifth heartiversary, I got notice that he may have been exposed to Covid…had he been in the school building. And I know I would be having a much different kind of night, tonight, if we had chosen differently for our family.

It is hard. He is learning. It is exhausting. He is safe. For me, this is the path we were meant to walk right now. And this, too, shall pass.

I’ll probably miss it.


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