Updates, info, and rambling.
After Little Green was suspended, the year got better. We changed her medication – took her off clonodine, kept her on ritalin – and despite what I thought would happen, it worked. The clonodine didn’t seem to make a difference in her sleep anyway (it was supposed to be a downer to counteract the upper, in a nutshell – I had read promising studies on kids with LG’s specific type of CP and clonodine making a difference but for now….no). Her tantrums at school calmed and/or were at least easily manageable.
Also she charmed the nutrition staff so much that they showered her with gifts at both Halloween and Christmas.
Everyone loves my baby.
They don’t see the tantrums the way we see them, which just sometimes makes it even harder. On Christmas day we made our annual trip to the giant Asian supermarket that’s open. LG was great throughout the shopping trip, though we still rushed (I always feel like I can’t catch my breath when we’re out with her – like I can’t think/plan/reason, I just have to grab/run/go). I got on the line to check out while Mr. Green took LG to get a treat at the food court. Of course I and everyone else heard the ear-piercing shrieks. I called out “Yep, that’s my kid!” as I paid for our noodles and tofu and seaweed and beer. By the time I got to the car, she was in full-on panic mode. Mr. Green and I started loading the food into the trunk and then he turned and started SCREAMING “STOP IT STOP IT!” She had reached up and behind her head and put her fingers under the fabric that covers the car ceiling (by the way, we have a brand new car – our lease was up, so we got a new car and a new lease) and started prying it off. And wouldn’t stop. We caught her before she could do significant damage – but then I had to sit in the back seat on the way home (I hate doing that) keeping her hands from doing that, from undoing her seatbelt, and from pinching the everloving fuck out of my arms.
When we got home she declared “I’m not sad anymore” and was mostly fine.
The tantrum trigger? My husband offered her a pastry at the food court.
She can’t handle choices – more than A or B and she flips out. She did it again yesterday at the bookstore, where we were spending her gift card from Hanukkah, and my husband had to drag her away while I simply chose some books and told her that’s what she was getting.
She can’t handle us telling her to stop doing something. She clatters her jaw at us and pinches.
We are definitely out of our league and not sure what to do next. Mr. Green pulled her out of OT and speech a few months ago because they were agitating her – the location, the therapists (we had been going to this particular location because of an OT we loved, but they left the practice and moved away, and we were at this location for speech by default – no great loss for either). But she needs therapy still. She’s about to graduate from PT too – she walks around the house without a walker and mostly without falling now. And as the dominoes fall, she also could in theory lose her Medicaid by having too few therapies. (I’m hoping we have a few years to sort that out but I’ll let you know in a month when the renewal should – probably – start.)
The neurologist doesn’t have time for us. Literally. And switching again is overwhelming. I have to wait it out.
We probably should see the dev. ped. but they have odd office hours and don’t take insurance at all. Maybe I can get that going though.
She’s smart and charming and making progress. She’s also draining and exhausting. We can’t go anywhere anymore. We can’t travel more than a 5-ish mile radius from the house. Even a trip to the grocery store is hard. I was home for the holiday week and we didn’t DO anything because we couldn’t.
And that’s the LG update.
Read this far? The me update is that I have a full-time job. Not only that, but my boss brought me on as a manager (instead of an associate) and gave me more money than I asked for. I have all the benefits – health, life, dental, vision, short term, long term, I don’t even know – I said yes to it all. I’m fucking terrified as I am about to walk into a crazy January full of high expectations that I don’t know how to meet. But I’m also proud and positive and trying to reframe my thinking. I can do this. I’m learning so much. I can step out of office drama. The co-worker that has the most drama with others is OK with me, I can just focus on that. The other upcoming drama….I can handle it. I can.
This year we got 100% out of debt.
We got a new car, a new mattress, a new bed, a new toaster oven (an expensive one!). I got an entire new wardrobe and developed a little bit of an Amazon addiction. I met with a financial advisor and look forward to doing some actual investing in the new year. I have enough in savings to get us through about six months if neither of us works, I am aiming for more. The idea of owning a home isn’t as impossible as it once was.
The state of the world has me in tears or screams most of the time.
But the state of me in my tiny bubble? It’s not so bad.
I just need to find a therapist.
See you in 2018.