Three years later...

 Well, today is the first of many milestone birthdays for the kids. 

Emily turns 13 today, so is no longer a "kid", she's a fully fledged teenager. 

Truth be told, she's been moody and "teenish" for the last few months, so it was only a matter of time for her age to catch up.

Holly, who will jump on any occasion with both hands, has been harassing Sue and I about Emily's birthday for weeks - can we have a party?, what decorations are we going to have?, need to get presents, etc. 

It got to the point that Mother's Day yesterday was more of a Mother's Morning, where Sue had pressies and breakfast in bed, then it was - we need to blow up balloons, have we got the bunting?, we need to go and buy party food. 

I'm glad the kids are growing up, but really lamenting, like most parents, that small kid phase where you're the centre of their world. I realise I wasn't the best teenager, and I'm hoping that our kids won't take after me, but time will tell. 

13 today for Emily. Still can't believe it.  

Four years on

So the last post was February 2014, and it's now February 2018 as I type this.

A lot has happened in the space of four years. Shortly after we discovered the joys of ABA, we started a home program - at great cost. Sue left her job around April 2014 (due to her role being relocated to Birmingham) and she was able to become Emily's full time ABA tutor. We still needed a consultant to create a program and let us know if we were doing it correctly. That's the costly bit.

After a year or so of doing an ABA program, we were able to collect enough data to demonstrate that Emily was making progress and, in her case, ABA worked. We then went to local authority to get them to change Emily's school from a general Austism school, to an ABA-specific one. We found a great school called Rainbow in Wandsworth and they had a place they could offer her.

Unfortunately, the local authority said no (assuming due to cost) so we took them to tribunal. We plead our case, with a raft of experts pleading our case, and the local authority and Emily's existing school plead their case. You can't argue with science (which is what ABA is backed by).

Emily eventually started at Rainbow and it was all good. She's still there and getting on very well. I believe ABA has really helped her. She's still a quiet, reserved child and you can tell she is "different", but I believe the change in both school and teaching methods have been very beneficial to her.

We've accepted, quite begrudgingly, over the last 9 years that Emily is who and what she is. There's no magic cure. You deal with the cards you are dealt and find the silver lining in the cloud. Emily is a lovely, loving child who loves her hobbies -books, puzzles, etc. She can ask for motivators like rice cakes and she can alert you to problems (like needing the toilet, or the fact that she has a bloody nose).

I do wish I could snap my fingers and have an actual conversation with her, but I need to focus on the good things, not the "wish I could haves".

Emily turns 10 next month and it's been quite the decade of ups and downs.

As I write this, Sue if trying to finalise Emily's EHCP (Educational and Health Care Plan). As usual the local authority are trying to downplay the effect that ABA has had on Emily in the last couple of years. Something we have fought so hard for. It's a shame that we still have to fight.

Oh well, nothing worth doing ever happened easily did it.

Over and out!

Updates

It's been a while since a post has happened, so here you go.

Over the last couple of months, we've celebrated Christmas in Australia, I've spent a week in hospital in Australia recovering from a minor stroke (fully recovered thanks, and on meds for the foreseeable), the girls have gone back to school and Sue's come down with bronchitis (on meds and getting over it slowly).

Late last year, I went on 3 parts of a 4 part ABA course to try and understand what it is and whether it would be of benefit to Emily.

While there I got the name of a consultant from one of the guys running the workshop. I'm happy to say we've made contact and agreements have been made to do ABA for Emily. The consultant is coming next Tuesday for an initial assessment and we can see where things progress from there.

While Em's not the most severely disabled autistic person there is, she is still not as high functioning as we'd like her to be, and we're hoping the ABA treatment will "bring her out of her shell" if that's possible. A bit more focus and more attention to tasks at hand (which don't involve Wiggles or PlaySchool DVDs) would be a good start.

With Holly, we have been provided a new SMALLER walking frame for her to get around. She's still amazing every professional she sees. When we got back from Australia her therapists, and nursery we all amazed at how well she was doing and progressed. It's great that some things can go so well. We just need her standing and doing independent steps and we'll be well on our way.

Walking...ish.

What some people would call taking a couple of steps, stumbling and falling over, we're considering a triumph.

Holly has begun to take independent steps, which can only mean proper "walking" is on it's way. By proper steps, I mean she puts one foot in front of the other without being aided to stand and then (if we're lucky) we get the second foot moving in a walking motion followed (if we're REALLY lucky) by a third footstep. Then, there's the invariable wobble and drop.

When I picked her up from nursery today they were so excited to tell me of this. Apparently Holly was quite self congratulatory as well (in that hiccup laugh that she does so well).

The downside of this (if there is one) is that she's getting quite impatient with people carrying her. She's squirms out of your arms (if you're not lucky) and wants to walk with you holding her arms.

She is hands down the most determined small child I have ever come across (and a number of her key workers have said the same thing).

Rather curious how the flight to Australia is going to pan out later this month.

Second ABA workshop

On Saturday I went to the second of three workshops on ABA. This day covered "10 tactics and procedures for effective behaviour change".

The main one covered was DTT - Discrete Trial Training. A lot of people, when they hear ABA actually assume it's only DTT. However, as I discovered on Saturday DTT is only one of hundreds of tactics and procedures you can use with ABA. In fact, you need data and feedback from other tactics in order to do DTT correctly, which was interesting.

There were various glimmers of hope during the day as a few suggestions and tactics were actually things we did with Emily already. A couple of new ideas - including trying to get WH questions (who, what, where, when, why and how) into her repertoire - may prove a bit out of reach at this point.

It was a tiring day, compounded by a late night Friday evening, but well worth it. Just need to organise some ABA tutoring for Emily now.

ABA show on BBC Four gets me thinking of where we're at with Emily

Having started the slow road to researching ABA and VB, it was happenstance that there was a show on BBC Four the other night about ABA.

It seemed to really dig into the more unsavory aspects of the treatment and there was actually an American woman from a Uni in Sheffield that said ABA can strip away all the behaviours that make an autistic person unique. 

This person CANNOT have lived with an autistic person. While there's a lot about Emily I love, there are some of her behaviours that are just downright annoying. The hands on the ears, the spinning, singing, jumping around - these are fine. It's the incessant random noise generation and constant lack of attention that are annoying regardless of condition.

Sometimes, I do feel we are living in the dark ages, and watching this show really brought it home. Are we living through an epidemic that needs to fought tooth and nail, or are Autistic people the natural evolution of our species - one that we're ignorantly trying to repress and stay normal, according to our pre-evolved standards of what normality means. 

I'm constantly reminded of the scene in Star Trek IV where modern doctors are about the hack Chekov's head open to try and save him and Bones simply tells them to put away their butcher knifes and let him save them. I can't help but think that in years to come historians could potentially point to this point in the past as the tipping point where we tried to suppress something we don't understand. 

I'm still of the belief that we need to at least curtail the most outrageous behaviours in an attempt to bring a certain level of normalcy (or at least suppress Emily's lack of attention and focus) because whether we like it or not - we live in a society that has a certain level of normalcy that we need to adhere to - we can't just poop in the street or knife whoever we want. Likewise, a food fight in a fancy restaurant really isn't tolerated. 

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.

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.

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.

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.