#NaBloPoMo Day 29: I Really Don’t Know What I’m Doing

A few weeks ago, I asked for suggestions on topics to write on, and my friend B left this comment:

I would appreciate any insights you have on balancing (hate the word, cause it’s not a thing, but can’t think of another at the moment) raising a child with special needs alongside your typical children. I don’t even know what I’m asking. Maybe conversations you have with C and N regarding how their roles and responsibilities will always be different than what you expect of G. Or the angle you take conversation wise when C or N realize G never really “gets into trouble.” Etc.

I’ve been thinking about this since she left the comment, trying to come up with some eloquent words or great insight on this topic. And the truth is, like so many other things in parenting, I don’t know.

I don’t know how to raise two children alongside their older sibling who will never be able to play with them, have a real conversation with them, or fully participate in all our family activities.

I don’t know how to explain to my little kids why their big brother can’t walk or talk. We talk a lot about how Grayson’s brain has a boo-boo, and his brain can’t tell his legs to walk or mouth to talk. They know he’s “sick” but how do I convey to a 4 and 2 year old that Grayson’s “sick” is different than when they get sick?

I don’t know how to balance parenting kids with such vastly different needs. I think the hardest part is very rarely can I “parent” them all together, at the same time. Logistically, I have to compartmentalize them into {Grayson} and {Charlotte and Nolan}, and one of those units is usually having to wait, or be by themselves. And Charlotte and Nolan get frustrated because getting Grayson changed and ready to do anything or go anywhere takes a lot of time. And when I’m playing with the younger two, Grayson is always nearby, but by himself. It’s kind of like living with kids but also having a perpetual newborn, in respect to the time and attention he takes.

I don’t know how to truly teach my younger kids how to have empathy for Grayson. Thankfully, we aren’t having the issues we were dealing with a few years ago, but the special needs siblings who live in my house do not behave like the idealized “full of empathy and compassion” siblings I read and hear about. I cut them a lot of slack though; they are still really little, and I know Grayson isn’t as “fun” as their other sibling. Neither of them bat an eye with his retching, drooling, and spastic movements- it’s what they’ve always known. I just try to involve them in as much of his care as I can- they fetch diapers and bibs, put his glasses on his face, and help his bus driver push the button on the remote for the lift.

I don’t know how to really explain all the extra help and attention Grayson gets. Having additional caregivers in our home has always been normal for the kids; Grayson has had night nurses since before Charlotte was born. We have therapists in our house 4 afternoons a week, plus nurses almost every night. And when we don’t have extra people, it’s mom and dad taking care of his every need, because he can do nothing for himself. That’s a lot of adults giving undivided attention to a child and then his younger siblings being expected to do a lot of things on their own. And of course, there’s pushback. And I know that Charlotte especially logically understands that Grayson cannot dress himself and she can, but still, to her, the difference in expectations isn’t fair. And she’s right- there’s nothing “fair” about any of this.

So yeah, I don’t really know what I’m doing. At all. But what parent does? Most days, I feel spread thin and that I’ve failed somebody. I love all three of those kids so much, but always worry if I’ve given each of them the individual attention and love that they need for that day. I guess as parents, in whatever circumstances we are in , we just do the best we can with what we know, and hope everyone turns out all right in the end.

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One thought on “#NaBloPoMo Day 29: I Really Don’t Know What I’m Doing

  1. You’re so sweet to answer my comment. Thank you. 🙂

    You hit the nail on the head with many points in this post. I resonate with many of them, especially the comment that you tend to compartmentalize the kids. I totally get it and many times Camille is having to wait and wait as I tend to Clara and/or Clara is sitting/playing alone if I am giving Camille attention. I don’t ever feel like I can “parent” them together. Always one or the other.

    Thank you for your insight and it is refreshing to know that despite how it may seem,most likely other moms raising both a child with special needs and a typical child struggle with this very thing, yet just show up every day and do their best. 🙂

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