It’s been a long time since I’ve done a post about our assessment journey with Chloe and life at home.
In truth, nothing has changed much. We are still awaiting two assessments with Camhs and the ASC team. We have a wonderful support worker who has been fighting our corner really hard and Camhs have now said Chloe is near the top of the list and our wait shouldn’t be much longer. But that was a few weeks ago now, so any hopes that things would move quickly have disappeared and I’m pessimistic again.
Chloe has taken a huge down turn with her anxiety, and things have been difficult. She struggles to go anywhere now that isn’t extremely familiar (Supermarket, park, school), and she won’t entertain any journey that is outside of our town, so we are unable to visit relatives or take a trip to the local forest, or beach. Basically we can’t go anywhere. She recently had to miss a school residential trip, which was so sad, as she so wanted to go, she just couldn’t. That said, we’ve had some big successes lately, and Chloe has managed to do a few things that she previously couldn’t. The behaviour issues are all still there, along with the hyperactivity. The residential bought things to a head a little more and the school have been more helpful since, I don’t think they realised quite how bad things are until then.
The other thing that seems successful is that Chloe now sees a Counsellor weekly, she enjoys it.
I’ve had cause recently to reflect on just how much extra care Chloe requires, I won’t go into why I’ve had to do this but to see it written down is really eye opening and a little upsetting. As a parent you just get on and do, and the really bad days are the ones that stand out, but actually each day is pretty hard going for various reasons. Starting with just the simple task of getting ready for school in the morning… taking up to 45 minutes to get dressed, not brushing her teeth properly, if at all. Tantrums and screaming matches if you dare to ask her to hurry. That’s a standard morning and actually features nowhere on the list of bad days. That’s just standard. It’s just one small example and I know that lots of parents will related to the not getting out of the house easily in the mornings. But imagine every single step of the day being the same. And then add a load of extra stuff on top for extra fun. I think I’ve talked about the details quite a lot so I’ll resist going into it all again.
I’m increasingly frustrated at the system, but again, I’ve moaned about that before, and I’m always wary when moaning about the assessment waits, after all, its not the fault of Camhs, the cuts have been crippling, and although life seems too much for us sometimes, actually there are so many far worse of its natural that we are lower on the priority list, but even so, as time passes, our priorities are changing as we become more housebound!
In other news, Chloe was 9 last month. Nine Years! Where has that time gone! As she’s growing and defining her tastes its becoming clear that she’s a little fashionista. She absolutely loves clothes, so long as they are black 🙂
So there we have it, not much has changed, we’re still waiting. Nothing much to report, other than increased anxiety, but it has to be said, that while that aspect of Chloe’s life has deteriorated (and therefore ours) Chloe has been incredible when overcoming some of her fears lately!
If this is something you are going through and you are interested to read more about our journey, you can find all my related posts here.