New Sensory Ball Pool

We took possession of a wonderful sensory ball pool today and Laura decided to dive right in before most of the balls were cleaned and put it. She LOVES it and hopefully when the playroom is finished we will spend some time each day in there. It used to be my study but since I finished teaching I decided to clear it out and make a playroom/sensory room for Laura. The room has wide patio doors onto her garden so will be great for me (or our carers) to sit in there whilst she's playing inside or outside.

Great summer

Laura had a great summer off school! She loved the Glenfield playscheme and also a few activity days at Rainbows and the Red Cross centre.

Half way through the summer her Make-a-Wish garden equipment arrived and it's fab although so far she has mainly used the water play tray but she has sat on the swing and the trampoline.

CAMHS Assessments

The CAMHS team continue assessing Laura's behaviour. They have produced a raft of reports which are proving useful in understanding why Laura behaves the way she does. Mostly it's down to lack of communication as Laura doesn't talk, doesn't sign and doesn't use PECs. She mainly uses gestures and shouting, although will use objects of reference if they're to hand (eg pass me a plate for toast, a cup for water, a wellie boot for garden...

Laura's school are responding positively to the assessments and reports too, which is great news as we can all work together to help Laura communicate more effectively and reduce her problem behaviour (shouting, dropping to the floor, general refusal).

The Vineland Report that the CAMHS team produced was a bit of a shocker:

Receptive Language: 11 months
Expressive Language: 14 months
Social/Interpersonal skills: 4-8 months
Motor skills: 24 months average

But it does make you realise the level she is functioning at and how easy it is to assume she can do more and understand more than she can. Even the outdoor water play, which she tends to be obsessive about, is down to her having very few other self-occupying skills (she is at infant level for this area as well as her coping skills). A sad dose of reality but I did ask for it to be done.

Laura's doing pretty well at the moment, averaging one bigish seizure a month and a few eye flutters daily. We've increased her clobazam to help with the big seizures but it has made her a bit more floppy and clumsy. She's happy though and enjoying the warmer sunny weather. Here's some recent pics...

People's comments sometimes hit home

I went to buy Laura some new clothes today as she has grown a lot in the past year and I know a lot of her spring and summer clothes won't fit her this year.

I'd really enjoyed choosing her lots of trendy outfits, always having to be careful to choose trousers without low waists as she is still wearing nappies. I really like her to wear lovely age-typical clothes as she is 10 now and the current fashions of leggings and ra ra skirts with trendy tops are good to disguise that she is wearing a nappy.

But my enjoyment was dashed by the comments of the checkout lady. It wasn't intentional but it was pretty ignorant and made me feel a little sad. She started off by commenting on how lucky my daughter was getting so many lovely clothes but then remarked that I was very daring choosing so many clothes without her being there as 10 year olds like to choose their own clothes. I said that she was happy in whatever I chose. Then she advised me to enjoy it whilst it lasted as she'd soon want to buy her own clothes and wouldn't be seen wearing anything her mum chose. I smiled and let it go, as sadly this won't be the case

I think one comment would have been OK but she did go on and on and I wondered if I should say something but decided not to bother. Now I wish I had done as she shouldn't be making these assumptions and generalisations.

Long time no blog

Laura's favourite things...

Apologies for being away for so long! I finally signed up for Facebook and that seems to replace the blog in some respects, although I will try and update regularly here too.

The Dravet conference in Verona went really well, my presentations were very well received, learned a lot from the world Dravet experts and made lots of good contacts.

Laura is doing relatively well at the moment. She had a bad sz at school on the last day of term and we ended up in hospital for the night but has been ok since.

CAMHS (psychiatrists) are doing an assessment for her behaviour and communication, and that is proving worthwhile but long-winded. Some of her screaming was definitely linked to constipation which with movicol, lactulose and coming off Topamax, has reduced a lot.

Since I last blogged, Laura has become obsessed with being outside in the back garden, playing with water. This has been great for her and for us, as before that she spent most of the time watching DVDs. Even through the winter, clad in her snowsuit, hat and wellies, she has spent long periods slopping with water and soapsuds.

The simple things

Laura has at last been back out into the back garden.

She spent over an hour just playing with blades of grass, pulling leaves off trees and trying to post them over the tall fence, and picking up twigs off the lawn.

It's cooler than the past few days and there's a bit of a breeze which she likes. No expensive toys needed for Laura, just nature!