New School Year!

It's hard to believe that Emily is entering her third year of structured school activity.

Emily on day one of school.

She was in Dragonflies from 2011-2012, Red Squirrels at Rainbows from 2012-2013 and now she's an Orange Tiger at Rainbows for the 2013-2014 school year.

She arrived home today and gave me a massive hug and cuddle, before running off to her trampoline.

Not really sure what this year will have in store for her, or what advances / breakthroughs there will be (if any).

Her class has the addition of another girl (of the three girls in the school, two are Orange Tigers) so it will be interesting to see if there's any female bonding at all.

Watch this space.

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.

NAS campaign

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.

It's not the pox

Having had to take Holly out of nursery early yesterday due to suspected chickenpox, Sue has clarified - via a doctor's appointment this morning - that it is not actually the pox. The doctor confirmed what Sue and I THOUGHT it was - heat rash. The bumps apparently don't conform to what the pox would resemble and they weren't all over her body.

This is good news for all involved - but does emphasise how this heat wave is taking it's toll on poor Holly. Even though she's not "poxy", she's still listless, grumpy, has a upset stomach and seems to break out grizzling for no reason. All, apparently, symptoms of being stinking hot.

At the behest of my mum, it really does sound like a good time to invest in an A/C unit for the house.

Chickenpox for Holly

Got a call today from Busy Bees that Holly potentially has chickenpox.

She's been quite moody and crabby the last couple of days, and this would explain her foul mood. I had to race home to pick her up before my call today at 2pm.

I still swear she's had chickenpox before, but I was told that depending on how mild she had it the previous time, she could get it again.

Wonderful.

She's currently quite placid and sleeping, so a little better off than she was the last couple of days.

New report shows US 18 times ahead of UK in Autism research

If you're keeping score of UK autism research investment vs US autism research investment, you might as well quit now. The US wins. And wins again.

A new report, undertaken on behalf of Research Autism, found that the US spends an average of 18 times the amount the UK does on autism research in accordance with population size. The US spent the equivalent of £75.79 per person with autism in 2010, while the UK spent just £4.26.

Ouch.

Still, I feel as this is a global epidemic and not constrained to national borders, ANY research being done is of benefit.

I would assume though, that with the budgets what they are, each region needs to be quite selective in what their aim their research at. I feel (without any basis apart from hunches) that the deeper work into the gut / autism relationship is being spearheaded quite deeply in the US. A lot of the specialists we've seen in the UK refuse to acknowledge any relationship and believe a change in diet to be purely a matter of choice.

Just the other day there was a hyperbolic report from the US of a change in diet "curing" a child's autism. It's a little extreme, but I believe the principles to be sound and this seem to be coming from the US.

The difference in research spending is fine; I'm just concerned with the sharing and being able to apply the best results to the afflicted. If the research becomes an "us" vs. "them", we will lose every time. 

Further proof regarding the gut - brain connection with autism

Read an article today about a boy in the US who seems to have been "cured" of autism by going on a gluten/dairy free diet. I read this with massive scepticism, but feel positive about the overall message.

Here's a clip from YouTube, but I have to warn you, the interviewer is really really REALLY annoying.

Sue and I have been in two minds whether any of the "hokey science" stuff we're doing with Emily is actually of any benefit. This includes cutting out gluten and dairy and also the homeopathic remedies she's been on. They say that dairy effects will be noticeable in 3 days but gluten effects can take 3 months to see.

We haven't really seen any dairy-related changes yet, but are hopeful that all the research does point to a gluten-free gut paving the way to a healthier gut and a lessening of the autistic behaviours we've come to tolerate.

Autism Show

This past weekend we traipsed out to Excel in the middle of East London to attend the Autism Show, put on by the NAS.

We weren't really sure what to expect, but knew that discussion around diet would not be on the table. When we go there, Sue sussed out the seminars (really just 20 minute powerpoint presentations) that she wanted to attend. My role was really to ensure that Emily didn't wander too far off or make too much of a nuisance of herself.
The stands were quite a mixed bag - there were sensory toy vendors, furniture vendors and a LOT of schools. I mean A LOT! Most of them were private and looking to score around £50,000 / year to educate our young. Nice if you have the money I guess.

The main area of the event was the stage area where a number of events were taking place, including Autism’s Got Talent - showcasing the talents of those in the spectrum. Apart from it being crazy loud, it was enjoyable hearing the event from ANYWHERE in the show.

It was a long day, and the seminars I attended didn't tell me anything new, but it was nice to be around like minded people and in a place where we didn't have to explain or apologise for Emily.

Emily's Detox Fever

The last 24 hours has seen Emily flush, quite lethargic and very feverish (and not for the flavour of a Pringle!) - to the point where she's asleep again right now ... at 4pm.

We've had her on her second round of homeopathic cleansing (part of the CEASE therapy that is recommended for Autistic people - depending on who you talk to) to rid her of the effects of vaccinations.

The first round of the CEASE therapy, to repair the effects of any antibiotics Sue might have taken while preggers with Ems didn't really garner any results (apart from loose poops from too much vitamin C) and we were really not convinced this latest round would produce any either.

Personally, I'm taking the fever as a good sign that this therapy is working. I just hope for Em's sake it subsides soon as you really don't wanna be burning up any longer than you need to. We have Calpol at the ready and are administering that and water as needed.

Em's also well into her gluten-free diet now, so I don't know if any of this is a result from that. I'd hate to think so as it's really not a terrific advertisement for going gluten-free: a raging fever.