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.
Monday, 17 June 2013
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
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| 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.
Thursday, 2 May 2013
Terrible story from Ottawa
I know how tiring it can be with two small kids with special needs. Sue, also feels quite sluggish quite a bit (which may be due to her medication). This means our spare time is usually filled with doing stuff for the kids or praying for bed.
I read a story today on CBC.ca about a family in Ottawa that just got to the breaking point of exhaustion and had to give their Autistic child away to the government.
I can't even begin to imagine the horror I would feel if that was my ONLY option left with Emily.
The article also made me start to extrapolate into the future - something I don't like to do with Emily. At the moment, she's dependent on us for everything, which children should be. As she gets older and peers become more and more independent, I'm afraid she'll remain dependent on us. In some ways I don't want her to ever grow up, so this disparity will never manifest itself.
I know every child is different and there's no guarantee how Emily will end up, but I still can't help but worry and reading articles like this only amplifies my anxiety.
I read a story today on CBC.ca about a family in Ottawa that just got to the breaking point of exhaustion and had to give their Autistic child away to the government.
I can't even begin to imagine the horror I would feel if that was my ONLY option left with Emily.
The article also made me start to extrapolate into the future - something I don't like to do with Emily. At the moment, she's dependent on us for everything, which children should be. As she gets older and peers become more and more independent, I'm afraid she'll remain dependent on us. In some ways I don't want her to ever grow up, so this disparity will never manifest itself.
I know every child is different and there's no guarantee how Emily will end up, but I still can't help but worry and reading articles like this only amplifies my anxiety.
Monday, 22 April 2013
Silver lining to the unemployment cloud
I've now been unemployed (outside the "gardening leave" state) for just over a week.
While it's utterly annoying to be without work, it came at a good time for Holly. It meant that I was able to attend her intensive therapy sessions without worry of missing work or having to take holidays. Unfortunately Sue could only attend the days she didn't work (Tuesdays and Thursdays).
We're looking at booking more intensive therapy in 4 to 6 weeks. I really hope I'm not still job hunting at that point.
While it's utterly annoying to be without work, it came at a good time for Holly. It meant that I was able to attend her intensive therapy sessions without worry of missing work or having to take holidays. Unfortunately Sue could only attend the days she didn't work (Tuesdays and Thursdays).
We're looking at booking more intensive therapy in 4 to 6 weeks. I really hope I'm not still job hunting at that point.
Friday, 19 April 2013
Intensive therapy for Holly
Over the past two weeks we've been doing intensive therapy with Holly. Given that she's only one year old, this really means doing an hour a day for four days a week (she has Wednesday as a rest day).
Sue and I were sceptical and hopeful before we began the sessions that they would aid Holly overcome her movement related issues. At the beginning of the session we had to list some goals we had for the two weeks.
Happily enough, one of the goals - Holly sitting unaided for a small amount of time - was achieved long before the end of the two week session.
Both Sue and I are really ecstatic with the progress Holly has made and we've seen how tiring it has been for her to do the work, even for the hour session. Now that the two weeks is over, Sue and I have our homework to continue what we've learned, while going back to having the one hour a week session (plus the hour a week NHS session).
Sue and I were so happy with how things progressed that we're eager to book in another two weeks. This won't be for another 4 to 6 weeks, to give Holly time to take on board everything she's gone through these past sessions.
Sue and I were sceptical and hopeful before we began the sessions that they would aid Holly overcome her movement related issues. At the beginning of the session we had to list some goals we had for the two weeks.
Happily enough, one of the goals - Holly sitting unaided for a small amount of time - was achieved long before the end of the two week session.
Both Sue and I are really ecstatic with the progress Holly has made and we've seen how tiring it has been for her to do the work, even for the hour session. Now that the two weeks is over, Sue and I have our homework to continue what we've learned, while going back to having the one hour a week session (plus the hour a week NHS session).
Sue and I were so happy with how things progressed that we're eager to book in another two weeks. This won't be for another 4 to 6 weeks, to give Holly time to take on board everything she's gone through these past sessions.
Tuesday, 9 April 2013
MMR jab for Holly
Let it be said that scare tactics do work.. sometimes.
In the case of the measles outbreak in Wales and its impact on our decision to get Holly the MMR jab, job done.
Sue and I had really been humming and hawing about whether to get the jab for Holly (it should have been administered about 3 months ago, around her first birthday), but all the horror stories of it opening the floodgates to autism were all too real for us to want to proceed any further.
It's really the lesser of two evils - the horrors that can come with infant measles (which are NOT nice) or a lifetime communication problem.
This hasn't stopped us videoing Holly in an attempt to remember the good times (and to have evidence if the worst does happen). We realise the evidence linking MMR to autism has been discredited, but when you read about people winning lawsuits, it makes you sit up and notice.
We're hoping for the best with Holly in all this, and if Emily wasn't an Autie, we probably would have no concerns. Time will only tell if we did the right thing. I'm hoping this is not yet another instance where I wished I had a suped-up Delorean.
In the case of the measles outbreak in Wales and its impact on our decision to get Holly the MMR jab, job done.
Sue and I had really been humming and hawing about whether to get the jab for Holly (it should have been administered about 3 months ago, around her first birthday), but all the horror stories of it opening the floodgates to autism were all too real for us to want to proceed any further.
It's really the lesser of two evils - the horrors that can come with infant measles (which are NOT nice) or a lifetime communication problem.
This hasn't stopped us videoing Holly in an attempt to remember the good times (and to have evidence if the worst does happen). We realise the evidence linking MMR to autism has been discredited, but when you read about people winning lawsuits, it makes you sit up and notice.
We're hoping for the best with Holly in all this, and if Emily wasn't an Autie, we probably would have no concerns. Time will only tell if we did the right thing. I'm hoping this is not yet another instance where I wished I had a suped-up Delorean.
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