Tuesday, 29 October 2013

Disease, affliction or evolution?

I was watching the trailer for the forthcoming X-Men film Days of Future Past and a strange notion hit me - as mutants in the Marvel universe are the evolutionary future of humanity, could autism be the evolutionary future of real life humanity?

It's of course a rather crack pot assumption on the surface. However, I started doing some research on Google and there's quite a few posts, articles and blogs about the subject. The usual suspects are trotted out as evidence that humanity has benefited from autism - whether it's evolutionary or a life long affliction. Names like Einstein, Newton, Gates, etc. - the ones who pushed human knowledge further than their counterparts and aided our evolution to where we are now.

Personally, I think the concept is a crock, but it does make for a good research session on the internet. There's a lot of stuff out there to at least make you consider it.

Have a look at this video before you go:

"We're the future, Charles, not them" - Magneto to Professor X in the original X-Men film.

Monday, 28 October 2013

Growing realisation of issues with Emily

Sue picked Em up from Helen's tonight utterly dismayed. Apparently Helen had to dry Emily's clothes in the dryer as they were wet from her weeing herself. The obvious question - how often did you take her to the toilet? - was met with a response akin to "I was too busy" (apparently she's got a full house with it being half term).

This incident just really hit home that Em isn't getting the right "experience" (if that's the right term) going to Helen's. She doesn't need an obviously over-stretched childminder neglecting her bladder needs resulting in a heavy nappy and wet clothes.

Sue and I are seriously having to rethink our strategy with regards to Emily. I don't really know if a childminder who specialises in special needs kids is available in our area. Given the issues with someone like Em, I can imagine if there was they'd have a very low child to childminder ratio, thus increasing the cost exponentially.

Emily is special needs - there's no getting around that - and we need to address this with increased special needs-related services for her. A one childminder fits all approach obviously isn't working and I really don't know what the solution is - logistically, personally, financially.

Even taking a full time position to look after Em wouldn't be the best solution as we aren't trained or equipped to facilitate her needs fully.

The mind continues to boggle.

Sunday, 27 October 2013

Verbal Behaviour course for Em.

I went along to the verbal behaviour seminar yesterday and while a lot of it was quite out of my grasp, it was a very interesting day.Although parents and grandparents and other relatives were free to take part, it REALLY was geared towards professionals.

The two things I really took away from this session were a) we really need to try VB and ABA with Emily and it's data and results driven (as opposed to whatEVER they're doing at school. The second thing I took away was I really HATE autism. I hate what it's done to Emily, I hate that we HAVE to have seminars like this to even start the journey to understand our kids, I hate what it's potentially going to limit her life to be like.

It makes me feel even worse with all the people posting on Facebook about how they love their child as they are and wouldn't change them. I have to say, if Em was neuro-normal, I can't imagine she'd be as energetic as she was. I'd take a slower child any day, if it meant she was neuro-normal.

I digress.

I didn't know anything about VB or ABA until I went to this class - and that was probably not a good thing, as a lot of stuff went over my head - not being a professional and all. What I did learn was the entire field is based on research by B.F. Skinner and, while his tome is quite difficult to read, the last 50 years or so have produced some good literature and some good protocols to combat autism.

I know I shouldn't get my hopes up, but I did come away from the day thinking that we might be able to reach Em a little more than we currently do. I guess that's what keeps you going in the end - hope.

Friday, 25 October 2013

Doctor's notes about Holly

Sue went to see Holly's paediatrician earlier this month, and we received the notes from that meeting in the post today. It still floors me that the letter was sent out to 11 different people/departments - all for one little girl!

As Holly is progressing and showing noticeable signs of improvement, we still think she's doing well. Reading through the notes, I realise that I may be deluding myself. There's a lot of development delay which isn't all that apparent to me, because the only yardstick I have to compare to is Autism. Also, seeing the phrase "Diagnosis: Cerebral Palsy" really makes it a lot more real.

Apparently various things that Holly is doing are at 15 month levels or 18 month levels. She's behind, but only by a few months (as she's only 22 months old tomorrow). This is really why this early intervention is key. I can only imagine how far she'd be behind if we DIDN'T have 11 departments/people working on our team.

The notes did point out that she's a happy little girl, which is very true (apart from when she's tired cranky or teething) and that good progress is being made.

Regardless of where she is on the months development scale, I'm still proud of my little girl and happy to have her here at all.

As I type this, she's happily sitting next to me playing peekaboo by herself and saying "oh dear" while I make dinner. I guess it's time I sign off and ask (to noone in particular) "Where's Holly?"

Until next time.

VB with ABA for Emily!

I'm off to an all day workshop tomorrow to find out more about VB (Verbal Behaviour) and ABA (Applied Behavioural Analysis). It's theories for therapy to aid with Autism run by ABA Tutor Finder.

There's three workshops and the first one is tomorrow from 10-4.30 in Holborn. I can imagine it's going to be pretty full on, but I hope I can get some practical takeaways to apply to Emily.

According to the website, "The course is suitable for both families and therapists wishing to further their understanding of ABA as an intervention for children on the autism spectrum and is an excellent opportunity to meet and network with fellow families and/or therapists."

Sue and I are both wracked with guilt that while Holly is the more pressing need ("the first two years are the more important") we're doing things for her at the expense of Emily. This is part of our effort to balance those scales.

Fingers crossed.

Charity for Holly

Sue brought Holly home from Busy Bees on Wednesday and let me know that they've nominated Holly as the recipient for their autumn fate fund raising event at the end of November.

I'm quite chuffed and also slightly embarrassed at having Holly singled out like this, but at the end of the day if the money raised can help her even a little, it's something I can get over.

The next step, from what Sue told me, is we need to piggyback on a proper charity who will receive the money and then allocate it in some way to Holly - either for hardware for her or further 1on1 support or even to pay some of the way for us to go to the Bobarth Centre in North London.

Really nice gesture at the end of the day.

Sunday, 20 October 2013

Emily continues to prove me wrong

A few weeks back, Sue was adamant we get a trail gator contraption, to hook her bike up to Emily's. While I was hopeful this wouldn't end on the scrapheap of aids for Emily like so much other good intentioned purchases did, I wasn't so sure.

Emily had shown no interest in her bike (as it's not a book) and the few times we had her on it were short lived to say the least. The outcome, as I could tell would be one of three scenarios - she'd stay on her bike and love it; she'd get bored and try to get off and end up grazing/bruising/hurting herself; she'd end up not enjoying it and let everybody know. I, personally, was expecting the second result as she's quite akin to leaving tasks she bores of without much thought for anything - let alone her well being.

Well, I'm glad to say she's proved me wrong. She stayed attached to Sue for the entire duration of our ride to the nearby park and back. She was happy to hop on the bike and be pulled around. I think most of the time was spent in her little world taking everything in, apart from the actual ride, but this is a really great stepping stone to doing more rides and getting her more accepting of it.