Extras

Autism parenting comes with a lot of extras.

Extra advocating, extra professionals, extra appointments, extra understanding.

Currently I’m advocating with the Department of Education about a bus issue for September. Well, not at this particular moment, I suppose. I told them on Wednesday that I’ll leave them alone until this coming week. You know, trying to keep the peace and all that.

I think I finally have everything set up for Penny to head to camp. Getting her into camp this year was much, much easier than last year because we went specifically with a special needs camp, but we still had to hire a worker, set up payroll, get approved for funding for said worker, etc etc. Luckily, we seem to have had great luck with the people we’ve hired before and this worker seems lovely as well. 

Before school ended there was a meeting we had about Rory’s start in September that really upset me. It all got resolved after I sent a (probably too harshly worded) e-mail to the school. In that meeting I heard that my kids are both very “high needs” and I’ve never thought that before.

Now, I know my kids can be a lot of work when it comes to watching them run or climb, but that’s the first time I think that someone ever said specifically high needs and it struck me for some reason. 

As the kids get older, some of their needs are (you guessed it!) extra.

(The irony is, I am writing this in my office while Rory runs around, and I had to stop after that last sentence for a few minutes because he opened a pile of paint on my chair. High needs? I have no idea to what they refer…)

It’s hard knowing that they’re getting older and some of the things they could get away with as a baby and toddler are no longer “socially acceptable”.

We have bi-weekly meetings about toileting issues for one kid. We’re working on getting one out of the house without a meltdown (because she really, really, really loves it once she’s out and active).We’re working on getting one home without a meltdown (because he really, really, really loves to be out and about).

They’re getting stronger and it’s harder to catch them when they run – it was worrisome that they’d get far away from us when they were younger now it’s more the fear that we won’t catch them even when they’re right next to us. Waiting in line is famously hard for toddlers and babies, but not always for 5.5 year olds. Not speaking or speaking later than most is common in toddlers, not when you’re almost 8. Like, I get it. 

But along with those extra worries and stresses, you know what else is extra?

Extra cuddles, because Rory loves to cuddle up with me all of the time. Exhibit A below (holiday naps for the win).

Extra excitement. Not only because it’s hard not to be excited when the kids get so excited for the littlest things, but the littlest things make us so excited too. Rory told me to “go away” yesterday and it was great. Penny “participated” in a water balloon fight the other day and I was delighted.

Extra time spent with my kiddos because well, 1. We don’t want to tire out our babysitters – we don’t trust everyone with our kids and 2. Because we go to so many appointments (usually during work hours) I often get to see the kids in the middle of the day which is nice.

The extra support is also super nice. I like when I have an issue that I can find the person I need to help me resolve it (even if it’s my own therapist!).

And to be honest, I’m often at my best when I’m mildly stressed. As long as I get to relax or sleep afterwards I like being constantly moving and solving issues. And when I’m not moving, I like to be cuddled by Rory. So the extras aren’t always so bad.