The Summer Begins

You may or may not have noticed that I’ve been a little quiet for the past couple of weeks. I’d like to have a pretty cool reason but it’s because I was really, really struggling. 

A large reason is that we were trying to get funding approved for Penny to attend summer camp. Penny is a flight risk among other things, so we needed to get a worker funded to stay with her during the day. It’s the first time I’ve ever tried to apply for this program, and let me tell you, it was not a fun time.

I can’t even say it wasn’t easy because everyone I dealt with was competent and quick once I reached them, but you’d think you were at the end and then there’d be like 3 other steps and someone else on holidays. I had to spend a long couple of weeks purely talking about my daughter negatively and it was really emotionally taxing. In that, I also unfortunately had my first experience where Penny was upset when she overheard me talking to a new Social Worker about her. She’s never seemed to pay attention before so I naively thought she wasn’t listening. Turns out, she was.

When I’m doing these things and advocating for my child(ren) I find it absolutely exhausting. I’m a person who tends to be pretty easy going. I don’t really rock the boat if I can help it. I’m a yes person. But when it comes to this, “the squeaky wheel gets the grease”. I have to be annoying, persistent, and constantly following-up. I have to sound competent when I want to cower. It goes against my nature and it makes me really uncomfortable (which in turn makes me literally just fall asleep).

By some miracle, the funding was approved on a Friday at 3:30pm when Penny and her Respite Worker were to begin on Monday at 8:30am. I also didn’t have to go through the process of finding a respite worker because one fell onto our lap after my last blog post which absolutely resulted in a celebratory dance from me.

Two things kept running through my head during this experience: 

Firstly, it is very upsetting that we’re likely going to be going through these processes for their whole lives and it is entirely unfair to have to fight this hard just for my kids to exist in the world. I try not to be bitter that other parents get to register their kids for things like camp and then just get to send them. They don’t have to have several anxiety attacks and public meltdowns and fill out countless pages of paperwork highlighting all of their child’s deficits before they can attend. They just get to go.

And secondly, I’m incredibly grateful for the people who I am surrounded by. I think everyone we know cheered when everything was approved and Penny started camp on Monday. When I got incredibly overwhelmed trying to contact people, I messaged my Senior Therapist and Social Worker and they worked some miracles to get shit done. It really is a team effort.

I hate complaining because I don’t really have a solution (and I dislike complaining without offering a way to fix it) but maybe they could streamline the services. Not make you have to rehash all of your child’s needs to everyone you talk to. Maybe leave it to the people who are hired to deal with Autism Services instead of sticking a parent in the middle. (I hesitate to say that though because I definitely need to feel like I have some portion of control over the situation). So, I guess this is more of a rant than anything helpful. It just sucks that not a lot comes easy for the kids. 

My gift to them (like most every parent) is to bear the weight of the hard stuff and let them have as normal a childhood as they can. They’re already doing the hardest work by living in a world that’s not always built for them and still continuing to thrive beyond measure.

Some positives this week:

Penny adores summer camp and her respite worker. The only day she struggled to leave the house was Monday, and after that she killed it. Totally worth the shit show to get her there. Apparently one day this week, she got out of the car and said, “amazing!” Side note: in all of my stress, I forgot to account for how she was actually going to get to camp, so shout out to my sister for figuring that shit out. 

We found a pool for the kids this week and they were the most excited. We were also able to attend a “bubble swim” at the Summit Centre where we had the entire pool to ourselves. I really hope that is a thing we can do post-covid too, because it was the most relaxing swim ever.

We went for a drive to St. Shotts to pick up Shamus’ dad’s truck and the kids were in their glee to be able to run around. It wasn’t even foggy – a miracle!

The best thing happened on the way back. We stopped to eat at a restaurant that only later we learned was on the side of an embankment. So, we told the kids they could eat in the pan of poppy’s truck instead of risking injury. As I tried to put Penny in the truck she yelled, “No!!! Poppy’s garbage truck!!!!” (which is in reference to the large garbage truck MY dad drives in Corner Brook – 7 hours away). So I asked, “you mean Poppy Froud?” “Yes. Poppy Froud’s garbage truck!” 

She hasn’t been in that truck in at least 2 years and hasn’t even been to Corner Brook to see it in over a year. A reminder that even if she appears to be in her own world, she is definitely paying attention!

Also, I’d like to know why when she saw Shamus was driving Poppy Hewitt’s pick up truck when we left St. Shotts, she somehow thought that Poppy Froud’s garbage truck was going to show up? The logic of a 6 year old, I guess.