We took Emily to music therapy today at Nordoff Robbins. The venue is a building next to the BRIT school in Croydon, which is kinda cool.
It was a half hour session with an Irish guy called Jimmy and he said afterwards that he could tell she was quite musical (nursery rhymes aside). When he changed key, she changed with him for instance. Apparently she also plinked away on the piano a little as well.
Afterwards, we were in Toys R Us and I felt like putting this to the test. I went over to the keyboards with Em and turned one on, playing a few notes. Em managed to plunk out a random tune as well. Not the Mozart I was hoping for, but she didn't shy away like she does when I approach her with my guitar in hand.
All in all, it seemed like a very positive experience and I'm looking forward to Em exploring music more and more over the coming sessions.
Saturday, 28 September 2013
Monday, 9 September 2013
Weekend with Emily (and attempts at dressing)
A slight snafu with a passport meant that Sue and Holly headed off on holiday to the Netherlands without Emily and I on Friday.
This actually worked out quite well, as I think Emily was feeling a little neglected and in Holly's shadow. Being away from her might be good (even if only for a few days) as she would have my attention 100%.
I've not been so hugged or interacted with by her in such a long time. We did a few errands together over the weekend, went to a couple of parks and even had Sunday morning "coffee" together at Costa.
One thing I'd been trying to get Emily to do over the weekend was to put her own nappy and trousers on. She can do shoes and (to some extent) tops over the head. She managed her trousers by herself on a couple of occasions. These successes were met with smiles, thumbs up and high fives. On at least one successful attempt, I actually got a smile and eye contact from an elated Emily.
It wasn't all fun though. There were a number of attempts where she started but go distracted by ... anything. If it wasn't so tragic, it would be comic watching someone try to clothe themselves with absolutely no interest in it, to the point of staring aimlessly out the window.
Not only do I have to pick my battles, I have to pick where I play them out.
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| Emily enjoying a babyccino at Costa. |
This actually worked out quite well, as I think Emily was feeling a little neglected and in Holly's shadow. Being away from her might be good (even if only for a few days) as she would have my attention 100%.
I've not been so hugged or interacted with by her in such a long time. We did a few errands together over the weekend, went to a couple of parks and even had Sunday morning "coffee" together at Costa.
One thing I'd been trying to get Emily to do over the weekend was to put her own nappy and trousers on. She can do shoes and (to some extent) tops over the head. She managed her trousers by herself on a couple of occasions. These successes were met with smiles, thumbs up and high fives. On at least one successful attempt, I actually got a smile and eye contact from an elated Emily.
It wasn't all fun though. There were a number of attempts where she started but go distracted by ... anything. If it wasn't so tragic, it would be comic watching someone try to clothe themselves with absolutely no interest in it, to the point of staring aimlessly out the window.
Not only do I have to pick my battles, I have to pick where I play them out.
Tuesday, 3 September 2013
New School Year!
It's hard to believe that Emily is entering her third year of structured school activity.
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.
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| 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.
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.
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.
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.
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| Emily having a sensory time on the beach. |
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
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.
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.
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| 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.
Thursday, 18 July 2013
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.
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.
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.
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