Break

I am terrible at giving myself a break. Even when I do, I struggle with feeling guilty, especially when it comes to being Kiran’s mom. So much pressure is placed upon me for his needs, his skill progression, his happiness, his health. And I feel it, constantly.

We took the last two weeks completely off – Kiran is on school break, so I also canceled all his private therapies.

We have watched a lot of TV. We have snuggled up and read books and sang songs. We have played with toys and I only occasionally worry specifically about incorporating therapy skills practice while doing it. We still practice walking daily, but not always with the walker and not as a focused goal. Kiran has gone to bed late on more than one occasion.

Why is all of that so hard for me? Eric and I had an entire conversation last night, because I admitted I feel like a terrible mother these past few weeks. I am so worried he will have fallen behind with his skills taking these two weeks off. I have pushed ahead with the rest, because I also feel like he needed the break (and so did his mama). But I worry. I feel intense guilt. Did I mention I worry? I worry hard.

I also don’t look forward to getting back to his intense schedule next week.

Uncertainty

Being a parent to a little boy with extra needs perpetually involves making decisions you aren’t sure are the right ones. Particularly a boy like Kiran who doesn’t have a clear developmental trajectory wrapped up in a neat diagnosis. There is no way to know when his skills will plateau and how much progress he will make. For that reason, I have always felt paralyzed in moving forward with equipment for him.

I took a step a couple months ago – finally – and filled out an application to a local organization called Children at Home, in order to get a changing table that would work better for Kiran. His physical therapist encouraged me to ask for a height adjustable table, because he is able to do pivot transfers and should always maintain that skill, even if he doesn’t progress beyond that. (A pivot transfer – because I had to ask for clarification, too, would be like Kiran can stand up from his wheelchair and support some of his weight while turning around to sit down on the changing table). A height adjustable table would allow the table to go low enough for him to sit on and then could be raised to a position comfortable (and back-safe) for an adult to change him on.

These are expensive, and I had no idea if Children at Home could or would even be able to cover the full cost of something like this. But I knew it was worth a shot, and I knew I needed a different solution for Kiran soon. Getting up and down off the floor multiple times a day to change his diaper is starting to take its toll on my body, and it’s uncomfortable for Kiran to be up on his current changing table because he’s too tall for it.

When I found out the table was actually going to be covered in its entirety and had been ordered and was on its way, I had so many doubts. Did I choose the right features? Did I really need the big table at this point? Will Kiran even need this for more than just a few more years? Will he successfully potty-train at some point? Will he be able to stand during diaper changes at some point? Did I do the right thing in asking for this type of assistance?

The table was delivered today and is in Kiran’s room now – Kiran is currently clapping in his bed instead of napping because it’s been a weird schedule day. And I have to admit the relief and joy in seeing that table was huge. It sounds a bit strange because it’s weird for me to even type it – but this changing table will literally change our daily lives.

Until you are living in this world, I don’t think you realize all the pieces of equipment and the costs involved – you certainly don’t realize how little insurance (and even the waiver!) covers. Insurance would have never agreed to a height adjustable table for Kiran, because in this instance, it isn’t so much a need for Kiran that the height adjusts – it is more a caregiver’s need, and insurance doesn’t care about that. The waiver Kiran is currently on only covers home and vehicle modifications – it is possible we could have figured out how to get some sort of built in changing table covered as a home modification, but that would have been more difficult.

I am beyond thankful that organizations like Children at Home exist, and that there are people who care about caregivers and those they care for – and who care about keeping children at home where they belong if at all possible. I am thankful my back will hurt less, Kiran will feel more comfortable during diaper changes, and this is a device that will grow with him for many years.

And if he does outgrow the need for this, in one way or another, I know I will be able to pass it on to someone else who has a need. I am so thankful today.