the way things are

I know people have strong feelings about a lot of things right now. I have chosen to keep quiet about my strong feelings about things, because I have run out of capacity, lately. My philosophy has just been to keep to myself and take care of my family.

We have sacrificed a lot in the last year and a half, in order to keep Kiran safe. A lot of people haven’t understood the level of sacrifice we chose, and that’s okay, mostly. The whole point is that he’s still here. I cannot – and do not wish to – fathom a reality where that is not so.

Making the decision to keep Kiran home this fall and start his kindergarten year online/virtually was one that I have been grieving, deeply, ever since we made it. There is no doubt in my mind or heart that it was the right decision to make, but I really didn’t want this for him. If I’m being honest, I didn’t really want it for ME, either. I am not a teacher, certainly not a special education teacher, nor am I a physical therapist, occupational therapist, speech-language pathologist (Yet!)…and I just really didn’t want to be in this position again.

There is a lot going on with health mitigation in the political and legal world in Iowa right now, especially as it relates to public education. I doubt I have to explain it here, but basically, this week, our school district could once again legally make the decision on whether or not to put a universal mask mandate in place. And our superintendent and school board members came through for kids like Kiran, who absolutely deserve – and need – to have a safe environment where they can learn in person. The vote was unanimous – masks will once again be required in all buildings by all people.

Again, I know people have strong feelings. But hear me when I say this: This is LIFE-CHANGING for Kiran and my family. We have quietly sacrificed and gone about our business and done our best educating him from home since March 2020. I could continue to do so, with success. I already see how much he is learning, especially with his virtual learning groups in the special education classroom. But, the screen fatigue and frustration behaviors I started to see toward the end of the school year last year, I am already seeing this week – week 4 of school.

So. It is time. His dad and I discussed quite a bit today about how we move forward and navigate the transition to in-person school for Kiran. With masking in place and good news about the vaccine on the horizon for kids his age, the benefits outweigh the risk. Monday, we officially start the process.

It will be a process. I am not sure what all it will take, but we anticipate a couple weeks before everything is lined up and ready. Because this was the kindergarten transition and Kiran is starting in a new school building, a lot of the in-person transition stuff wasn’t taken care of at the beginning of the year. Health documents need updated and g-tube education needs to take place. I don’t know what the associate situation will be, if they have someone or will need to hire someone to be one-on-one with him. I just know I plan to do everything I can to make the transition go smoothly.

Also, thinking about the possibility of this the other night, I cried. I cried a lot. This is no ordinary transition into kindergarten, not in any sense. Kiran has been home with me all day, most days, for a year and a half. As hard as it’s been…as many days as I have just wished for ten minutes to be alone…as overwhelmed and exhausted as I have been trying to wear alllllll the many hats to help Kiran thrive…

I am going to miss it. I am going to miss HIM. I have never forgotten to stop and take the time to appreciate how lucky I have been, to get this front row seat to his education. I have watched so many tiny steps of progress and seen so many concepts click for him after so much work…it has been such an amazing experience. Like it or not, I am going to miss a lot of those moments now. They will happen all day every day at school, and I may or may not hear about them later. And even though it was never “supposed to be this way”, this past year and a half, it was. It was this way. And it makes me sad knowing it must now go to the way it “should have” been.

It is absolutely what Kiran needs, wants, deserves. I am thrilled for him, and I know that he will grow so much learning alongside his peers. There are just some things, like true real life social interactions with others, we can’t replicate at home. He will be so excited. He loves his people.

But one of these soon here days…whenever it is time, and I drop him off for his first day of in-person kindergarten….

I am going to be a puddle. A giant, weeping mess of a woman. And it will be so, SO hard to let go.

It’s a long road ahead, but we journey together. This part of our journey is coming to an end, and it is time to navigate a new path. I’d like to say I’m ready – I’m not – but I do know, without a doubt in my head or my heart, it is time.


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.