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.
If you’re following our story, you’ll know that Chloe, age 8, is currently on a waiting list for Autistic Spectrum Disorder Assessment. It’s a long old process which I’ve covered in other posts. Her anxiety has really stepped up a gear over the last few months, with panics daily or every other day for a period of time, thankfully that seems to have settled down again but the anxiety attacks always return at some point.
We now have a second referral in place for Chloe, after a meeting with the ASD team, they were extremely concerned about Chloe’s anxiety levels and suggested a referral to CAMHS (Child and Adolescent Mental Health Service). Again, nothing happens quickly and there’s a long wait for this, so I’ve been forced to find other ideas to help us get through these panic attacks.
We’ve long been aware of how important breathing is and as soon as we (either Chloe or me) become aware of what’s coming we start with the deep breathing. A problem for us is that most of Chloe’s panics occur when she’s alone in bed, so by the we are aware there’s a problem Chloe is usually too far into a panic to come back easily.
So I came up with the idea of putting together a little kit of things that can help her to relax before we get to full on panic attack stage. I thought I was being super clever, but it turns out that such kits are already a “thing”, and are known generally as Self Soothing Boxes, because the idea is for the child to use them to calm themselves.
So putting together our kit was quite easy, I had lots of ideas, some of which I’ve not yet done, but will mention at the end of the post. The items I included for Chloe are quite specifically chosen for her, some of her needs (and indeed issues) are very sensory, so I chose sensory products to go inside our box.
So I started by buying a box, something pretty and appealing for an 8 year old girl.
I think this one was £6.99 in W.H. Smith from memory.
Inside I put two chewy bangles. Chloe gets great satisfaction sometimes from chewing, I mostly like her to have chewy jewellery because if she doesn’t have it, she chews her hair or clothes, these cute little bangles are from Gumigem.
Next I added a little Taggy. Now, parents with babies may already be familiar with Taggies as they often used for babies. I bought this one from Ebay, Chloe, does love a good skull, and I bought it for two reasons. Firstly the fleecy fabric and ribbons feel nice, and for a sensory person, touch is important, and soothing. Secondly because I also bought a bottle of Lavender Essential Oil. I really believe lavender is a relaxing scent so I had the idea to add some drops to the Taggy, so that it was scented. The Essential Oil does not live in the box permanently, but Chloe is under instruction to let me know whenever the fabric needs topping up with scent.
Next I added a Fibre Optic lamp. This little bargain was £3 in B&Q in the sale, but they had themed ones (Hello Kitty, One Direction, Moshi Monsters etc) for £6.99. These are really gorgeous, beautiful colour changing lights, and very tactile (but because it was a cheap product I can’t imagine it’ll last too long).
Next I made up some home-made stress balls. Now I can’t take the credit for the idea but I can’t for the life of me recall where I got the idea from, however, they are so simple to make, basically just stuff some balloons with play doh, that’s it. Mine need a bit more work as they are a bit small and the biro faces are just rubbing straight off, but they work and Chloe gets satisfaction from squeezing them. I have bought stress balls but they never last longer than five minutes!
The final item is a bottle of Rescue Remedy. I’m going say straight off that I think Rescue Remedy is a load of nonsense, I don’t believe it does anything. I’m not an 8 year old girl though. I had hoped that there would be a placebo effect when entering a state of high anxiety, so if I told to take some Rescue Remedy to help calm her down, then she would willingly. Again, this item doesn’t live in the box, but its part of her kit and its where she can see it but can’t reach it, she just has to ask a grown up if she wants a drop.
That’s everything in Chloe’s box right now but its a work in progress.
I’m sure I’ll get more ideas and keep adding to it. It seems to work well, sometimes she goes and gets it out herself, and sometimes I have to give her a nudge, and sometimes she’s so far gone its just too late, but I’d recommend it for anyone, even kids who don’t have anxiety. A little box of favourite things to touch and look at can be really calming when a child is a bit over excited!
I’m also expecting delivery, tomorrow hopefully, of a weighted lap pad for Chloe, I don’t really know if weighted items will work for her but I’ve heard a lot of good things about the effect of weighte blankets on children with ASD and sensory issues, so I’m optimistic, but I’ll update on that another time.
I hope this post has been helpful to someone out there anyway.