Friday, 30 August 2013

Camping in Dorset

We got back today from camping in Dorset with two other families.

I really had no qualms about taking Emily as she's always going on about "tent" and wanting us to cover her with an afghan, duvet, etc. and Holly is at that easy going age where she's not all that arsed where she goes as long as there's food and a clean nappy.

Sue managed to cram everything we needed to into the car - including tent, sleeping bags, clothing, pushchair AND Holly's monstrous walker. We managed to push her around the campsite a few times, much to her (short lived) delight.

The biggest pain was Emily unfortunately. While she was happy to dance around and explore, she really had no about dancing and exploring in the middle of the road, or running off to another part of the camp ground and doing her thing there. While she was awake, Sue and I had to keep one eye on her and one eye on what we were doing - which never really resulting in us relaxing, until after she was asleep.

Emily having a sensory time on the beach.
Holly was the star of the show with her vast appetite. No one could believe that a child that size could eat FOUR breakfasts (banana, cereal, toast, custard/yoghurt) and still be up for whatever ANYONE else was eating. I'm thinking/hoping she's just going through a growth spurt and that we're not going to have a Clifford the Big Red Dog on our hands ("he eats and drinks A LOT").

We capped the holiday off by spending the day on the beach near Sandbanks (near Poole). Apart from getting sand EVERYWHERE, it was a nice relaxing way to spend the day. Emily decided that the feel of the sand was really nice and proceeded to bury her face in it, as well as run her feet and arms in it. The shower that evening was FILLED with sand.

We also got her to eventually accept the water and have a bit of a dip. Small steps, even though she likes swimming (in a pool).

Glad we could get away and it was a good relaxing time (apart from chasing Emily) for everyone involved.

Saturday, 3 August 2013

NAS campaign

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I've just signed an NAS campaign, and so should you.

If you go over to Put autism on the NHS agenda you can fill in a campaign aimed at the NHS. As the campaign page states:

"A brand new health body called a Health and Wellbeing board is being set up in your area. It will have a crucial role in deciding what areas of health and social care should be prioritised, and checking if your council and the NHS are being transparent about the support they’re providing adults with autism.

To effectively do their job, they need to understand autism and the current challenges in your area. Otherwise, their role in helping adults with autism will be wasted.

You can help by sending them our message using this online form. That way we can put autism at the top of their agenda from the start."

It does worry me about how Emily will be treated, live, etc. as she enters older stages of her life. Hopefully getting the NHS to think about it and sort things out now will make sure she's well cared for in 10, 15, 20 years' time.

Intense therapy for Holly

At this week's physio session for Sue, it was decided that due to Holly's progress no further intense sessions were required.
Holly in her special high chair.

This was wonderful news, as not only does it mean Holly's progress is going well, we also get to reclaim some holiday time and have a break together! Whether this means we try and steal some of the fading embers of the summer and go away or book a couple of weeks at Christmas, we've now been given a get out of jail free card.

The only caveat we were given was to take Holly's walker contraption wherever we go, so we can keep up with her walking therapy. This thing is a massive thing and could potentially limit any holidays to staycations, but that's not really a problem.

This also means we don't have to wait and see about the Bobarth Centre therapy sessions in North London.

In case you were wondering, Holly IS making wonderful progress. She hates lying down and if you pick her up to sit up, she will throw a strop if you don't pick her up to let her walk around. She's still really weak in her trunk but the dedication and strong-mindedness is there to want to do it. More home therapy around trunk strengthening is really needed and hopefully she will eventually walk unaided.

We've been told she may never be able to do a trek, but instead may either need a cane or walking stick or only be able to walk small distances before needing to sit down again. I'm hoping small distances equates to around 4-5 miles, because I'm there with her on that. Somehow, I assume it's much shorter than that.