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.
Thursday, 18 July 2013
Wednesday, 17 July 2013
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.
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.
Tuesday, 9 July 2013
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.
Ouch.
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.
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.
Thursday, 4 July 2013
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.
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.
Monday, 17 June 2013
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.
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.
Saturday, 8 June 2013
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.
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.
Tuesday, 4 June 2013
New homeopathic course
We finished Em's first homeopathic treatment a couple of weeks ago. Sue met the homeopath last week and got a load of new tablets and potions, etc. for us to give Em.
Day one of the new regime was yesterday, so here's hoping we get some good results from this round.
Sue and Em are also getting fully into their gluten-free diet. It's stupid expensive, but if we can bring Em around - even slightly - it will be worth it. Sue's also toying with taking Em off milk (lactose or casein or something) to see if that provides any more impact.
All signs point to getting the gut sorted out being the first milestone on the road to a better life, so it's worth a shot doing all this.
Day one of the new regime was yesterday, so here's hoping we get some good results from this round.
Sue and Em are also getting fully into their gluten-free diet. It's stupid expensive, but if we can bring Em around - even slightly - it will be worth it. Sue's also toying with taking Em off milk (lactose or casein or something) to see if that provides any more impact.
All signs point to getting the gut sorted out being the first milestone on the road to a better life, so it's worth a shot doing all this.
Emily swimming
 |
| A shot of Emily in A pool. |
Em's had a mixed history with pools. We took her to aquatots when she was small, but since then her and pools don't get on very well... at first. Trips to Canada and Spain have been met with trepidation at first and then reluctant acceptance.
I'm happy to say that from where I sat... behind glass, with Holly on my lap, Em looked relaxed and really into the session.
As I wasn't allowed to take photos (something to do with perverts snapping children in pools), I've attached a photo from last June when we went to Spain, to show that Em DOES like pools eventually.
Em's going along to Westcroft next Monday for another taster session, but all signs are full steam ahead for swimming lessons for her. Of course, it didn't hurt that last night was one-on-one and consisted more of playing than lessons, but you have to start somewhere!
Friday, 17 May 2013
Emily's adult future with autism
While all children need help with things like bum wipes and having their meals cooked for them, I do worry about Emily will interact with the world as she gets older. I assume she'll be able to dress, bathe, cook for herself, etc. but I'm not guaranteeing it.
I've just found an infographic from NAS (copied below) that outlines what adults with Autism currently need compared to what they receive in way of aid. It's not really all that optimistic reading at the moment.
Have a look for yourself below and if you feel compelled to get your MP on the case, you can add your name at the National Autism Society website.
I've just found an infographic from NAS (copied below) that outlines what adults with Autism currently need compared to what they receive in way of aid. It's not really all that optimistic reading at the moment.
Have a look for yourself below and if you feel compelled to get your MP on the case, you can add your name at the National Autism Society website.
Tuesday, 7 May 2013
Random words. Could it be communication?
Emily has just come to be and said this seemingly random list of words:
Baby.
Swim.
Painting.
Sitting.
Planting.
Drawing.
Smartboard.
I'm just wondering if there's any connection here to what she did at work today. As I'm repeating the words to her in an effort to communicate with her and to string the words together ("drawing on the smartboard?"), Emily's becoming more animated and smiling quite a bit.
It would be nice if ANY of this was tied into her school day as communicating with her about what she's experienced would be a lovely thing.
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