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!

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. 

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.

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.