Thursday, 19 April 2018

Ben and Finlay's European Motorcycle Adventure - The Tour Continues!



Intrepid motorcyclist Steven Mackay is heading off on his annual European adventure and once again he has kindly volunteered to undertake a fundraiser to guess his overall mileage in support of Ben and Finlay's program.

This year's trip will depart Steven's home in West Wemyss, Fife on 11 June 2018 and travel all the way to Sarajevo in Bosnia Herzegovina. Steven will return to Fife on 29 June 2018.

The trip sponsor sheets have an overview of his intended route and also a hint as to the total mileage he will cover.

Funds will be raised by requesting friends, family and colleagues estimate the total mileage that will be covered during the trip from Fife to Bosnia and back again. Those guessing the closest to the final total, to be disclosed on Steven's return home, will win one of the following fabulous prizes -

£100 John Lewis Voucher

£50 Amazon Voucher

A bottle of Moet et Chandon Champagne
 
Friends, family and colleagues are encouraged to take a 'guesstimate' sheet and share it with their friends, family and colleagues. Each sheet has 25 spaces for a guess. Each guess costs £2 or you can have three guesses for £5 or lucky seven guesses for £10. You don't have to fill the sheet though and for those only wanting to make one or two guesses, we will retain a master sheet that you can add to.

Please get in touch if you can help by taking a sheet, this fundraiser has had great support in the past and Steven's daily blogs, which we'll share to the boys' Twintastic Adventures Facebook page, are really enjoyable and informative, rich in culture, history and good fun as well as containing some excellent pictures of his travels and encounters.



 
All the monies raised are administered and retained by Ben and Finlay for the purposes of their ABA program. No monies will be redirected to pay for fuel, accommodation, food or any other costs associated with the trip.

Big thanks are due once again to Steven for helping Ben and Finlay to a better future, please help and share his European adventure and perhaps win one of these excellent prizes.

 

Wednesday, 18 April 2018

JDB Transforming Homes and Lives

A few months ago, JDB Decorating and Property Services posted a competition on Facebook asking folks to nominate someone who needed a smile put back on their face and they pledged to do this for the winner by transforming a room within their home.

We have used JDB several times previously and they do a first class job so I decided to nominate the boys' Mum never of course expecting to win. It's been a tough start to the year in terms of things going on in the background in respect of various service providers and the constant invasive scrutiny, assessment and review has had a telling impact on our wellbeing.

We were delighted that a few of our 'lobbyists', ha ha, added great support to our nomination through their helpful comments on the competition page - thanks for your help folks!

You can only imagine our surprise when Johnny got in touch to tell us that we were winners! As you all know, the boys undergo their program in our home so at times it's akin to Piccadily Circus and the wear and tear is greater than in most homes. We asked for Johnny and his team to tackle the paintwork in the hall, staircase and landing as the walls and ceiling were looking tired and a bit shabby.

The JDB A-team arrived within a few weeks and did just what the competition promised to do - they transformed our hall and landing and in so doing put a big smile on Mum's face! We are so pleased at the outcome and so pleased that we were selected to benefit from this competition. Big thanks to JDB and to those who supported our entry! We would certainly recommend them to anyone looking for painting work to be done.

Here's a bit aboutt JDB -

JDB Decorating and Property Services cover all aspects of interior and exterior decoration for Commercial, Domestic and Specialist projects.   Everything from prep work, painting, glossing, wallpaper hanging, spraying and restoration work no matter the size of the project is delivered with total professionalism.

With extensive experience in the Dunfermline, Fife area, Central Belt and across Scotland, we are a family run business that pride ourselves on our reputation and commitment to excellence. For all your decoration requirements, contact us today.

Our aim is to make sure all work is carried out with the minimum of hassle but that the standard of work will exceed your expectations. We are always here to answer any questions and we make communicating with our clients a top priority.

Although Painting and Decorating is our core business we also have staff that specialise in:

  • Joinery
  • Plastering
  • Plumbing
  • Ames Taping
  • Landscaping
  • Electrical services
  • Roofing
We undertake projects from a living room ceiling to an extension or complete refurbishments to both Commercial or Domestic properties.

Cash for Kids helping our Superheroes!

As part of world #AutismAwarenessWeek we are delighted to report that Cash for Kids have once again given their support to Ben and Finlay's ABA program by providing us with a grant for our annual intensive week at Skybound Therapies in Wales. They posted the following message of thanks from us on their Facebook page - 

"The journey we are on with our boys is life changing for us as a family, without the support of the fantastic Cash for Kids charity we would not be able to continue with Ben and Finlay's ABA program. This program has transformed our lives and enabled the boys to do and achieve things we were told would not be possible when they were diagnosed. With your help, we look forward to continuing to give them every opportunity of reaching their potential, thank you so much again!"
 
Here's a bit about this marvellous charity and the great work they do.
 
Radio Forth’s Cash for Kids consists of Emma, their Charity Manager, Ian their Corporate Fundraising Manager and Alice their Charity Executive.
 
They work tirelessly all year round to ensure children living in poverty, with additional support needs and suffering from life limiting illnesses in Edinburgh, the Lothians and Fife get the opportunity to live their lives to their full potential. Their biggest campaign, which you’ve probably heard of, is Mission Christmas. In 2017 they ensured that over 20,000 local children who would otherwise go without woke up to a gift on Christmas morning.
 
Throughout the rest of the year the charity grants out funds quarterly. Local community groups, projects, families and schools can apply to them for funding via their website @ www.forth1.com/charity.
 
In order to support the number of children that they do the charity relies heavily on their fundraisers.
 
They have numerous events throughout the year to fund raise such as Superhero Day, Ladies Day, the Sparkle Ball, and Tour de Forth. If you would like any more information on these events then please visit their website @ www.forth1.com/charity.
 
If you want to get involved they have a fabulous new fundraising initiative called 1000 faces. They are currently working to recruit 1000 faces in Edinburgh, the Lothians and Fife to each raise £100 by the end of 2018. For more info and if you would like to sign up to support the 1000 faces campaign please go to www.forth1.com/faces.
 
Last year Cash for Kids raised over 1.5 million pounds, helping over 54,000 local children. They couldn’t do that without the amazing support network they have in their local area and for that they are eternally grateful as are we for their continued support.

Blogging drought...change the channel but keep this as a favourite...

Visitors to this blog may notice that we haven't posted much recently, apologies if we've disappointed you. Time is a precious commodity especially when you have a dynamic duo like ours whose Duracell batteries only run out at about 10pm each night. That doesn't leave a lot of time to do everything that needs done about the house and to commit to posting stories on here.

We have been making more use of social media in posting about life with the boys. It's more spontaneous and means we can quickly share photos and videos to reach our global audience, ha ha, far easier than cranking up this site.

We've added all our cyber friends to the boys' Twintastic Adventures page on Facebook and are delighted that so many have shown an interest and taken time to like and comment on all we get up to. Your support really is valued and often keeps us going during occasional difficult times.

We will also retain this blog and post when we can, usually those longer tales that are too lengthy for social media and also to keep asking for your support in fundraising ventures to allow us to continue our boys' development and give them a chance later in life when we are no longer around to care for them.

We hope you all understand and thank you again for your support!

Wednesday, 14 February 2018

What's in a name? That which we call a rose by any other name would smell as sweet?


Please read this searing, moving essay from Prof Mickey Keenan about the 20 years of hurdles put in front of parents and professionals choosing ABA, which helps kids learn skills for a better quality of life and which is considered mainstream and top-of-the-evidence tree in much of the rest of the world. 


"Just before Christmas 2017, a parent-led charity I established for educating parents of children with autism in evidence-based practice celebrated its 20th anniversary. Today I learned that the first little boy in N. Ireland who benefited from what I started all those years ago passed his driving test. To be honest, that really touched me deeply, more in fact than when he was awarded his Masters degree in American History. He had been a child destined for an institution because psychologists at the time could offer no practical solutions to his parents that would help him acquire even some of the most basic skills. Without labouring the point, I was aghast at the situation in which the parents found themselves. At best, most parents of children with autism in my community at the time were offered a medley of bereavement counselling combined with tea and sympathy. It seemed that well-meaning professionals, or sugar-coated prophets of doom as I have heard them described by parents, were not prepared to regard these children as kids who could learn. Furthermore, they did not believe it was possible to acquire skills that would help the children acquire skills.

During the 20 years that PEAT has been in existence it has helped hundreds of parents approach the education of their children in ways they did not think was possible. Along the way, PEAT accomplished some significant milestones. They produced the first book in Europe on educating parents in evidence-based practice and they produced the only multilingual online multimedia platform for educating parents, one that has now been translated into nine languages (German, Spanish, Dutch, Italian, Swedish, Icelandic, Norwegian, Czech, Portuguese, and Canadian French in progress). This is a remarkable achievement for a small charity in a community torn apart by conflict over the years. Yet, with these achievements their story continues to be one of struggle for we live in a culture where repression and censorship are standard fare. I have seen dedicated professionals who work for PEAT, professionals with Masters level training, standing on street corners with buckets collecting money to help fund the work they are doing. Despite the practical support it provides to families, PEAT has never received any government support in all these years. By contrast, other autism organisations have no problem obtaining government support, even though these same organisations make referrals to PEAT. The unfairness is simply staggering.

The underlying motivation for marginalising parents who opt for evidence-based practice when educating their children is something that extends across Europe. In this essay I will outline what I consider to be the main reasons for this shameful state of affairs.

Let’s start with the title of this essay. It comes directly from Shakespeare’s Romeo and Juliet. Juliet laments Romeo’s name because their families are mutual enemies and she is not allowed to associate with him nor mention his name. Up until now I felt that I too had to hide the name I wanted to mention because I wanted to avoid hostility directed towards me.

However, to continue hiding would be disingenuous. It would not honour the love that is channeled through the actions of PEAT professionals, a love that has touched so many hearts in very practical ways, but as I have said, a love that has been censured in such a callous way. The way they share their love is by embracing a science that has perfected ways for helping others in need. Parents on the receiving end of love guided by this science feel the effects of the meticulous attention to detail that is its hallmark. And the name of this science, Applied Behaviour Analysis (ABA). There, I have said it, I have uttered a vile word, the name of a contemptible discipline.

I have seen professionals who have never studied ABA unashamedly dismiss it without even the slightest concern about falling prey to the most base form of prejudice. Often ABA is regarded simply as one of a number of interventions for autism instead of correctly being viewed as an applied science. Those who make this mistake also claim to be trained in ABA to the same extent as those who are trained to internationals standards. They use ABA ‘techniques’ without being interested in the scientific heritage that spurred their development. I’ve never understood that position. And when misrepresentation is pointed out by those who have studied it, I simply am amazed at the arrogance in retorts I have heard over the years. As a child who grew up in N. Ireland, I am familiar with many facets of prejudice by those in the ascendancy. Raised by a Protestant mother and a Catholic father, I experienced at first hand the damaging effects of misguided conclusions conceived in the shadow of myths. When visiting both sets of grandparents, it was at times a surreal experience to cross from one perspective tainted by prejudice to the other perspective similarly tainted by its own but different version of prejudice. Never did I imagine, though, that professionals in the UK would replay those scenes from my childhood. I should have known better.

The families of my own parents, and the families described by Shakespeare, were not able to break free from the chains controlling their beliefs in order to accommodate an alternative perspective. However, many parents of children with autism have broken free from the myths about ABA. Unfortunately, I have seen them pushed to the point of exhaustion in defence of ABA in Tribunals. Where else would this be allowed to happen? Where are the investigative journalists who want a human interest story about professional psychologists peddling misinformation about a science in which they are not trained while parents do what they can to defend a science in which they are not trained? The ethical drama is simply staggering and at the same time diabolical. It’s almost as if the parents are put on trial for being witches, inhuman creatures whose raison d’etre is to harm their children. The truth is that these parents are heroes, mustering all of their love to defend the opportunity for their children to acquire skills that others believed they were unable to acquire, and using skills they were taught for collecting evidence of their successes. So much for equality of opportunity. So much for the rights of their children to be regarded as people deserving of the opportunity to be guided by the scientific method at the heart of ABA.

With so many parents across the UK now championing ABA in Tribunals, and winning, it is clear that something is amiss. Clearly, the anti-ABA brigade are not the only bastions of love for others. Nevertheless, ABA professionals who guide parents in increasing awareness of the consequences of their actions when educating their children continue to be maligned for doing so. Over the years I have been teaching ABA I have identified a few concerns that repeat themselves in every class. If not handled sensitively, these concerns poison the understanding of ABA and then it is completely understandable that anyone would want to protect parents and children from such evil. Such is the power of consequences! I can’t possibly address all these concerns in a few words, but here is an inkling of what I discuss in class.

Behaviour analysts view the term ‘education’ as a term that addresses ways of designing experiences for a person in such a way that the experiences help him/her achieve a goal ... . ... The educational goal may be selected by the individual doing the learning, or it may be selected by others in his/her social world if it is considered appropriate to do so. All parents arrange experiences for their children, and often we arrange experiences for others without any awareness of the principles of behaviour change we are using. In fact, when you interact with another person you cannot NOT [use the laws of learning] during the spontaneous flow of the social interaction. Those who perpetuate myths about behaviour analysis miss this point. On one hand they dismiss the science because they object to the very idea of ‘deliberately doing something to change a person’. In the very next breath they engage socially with a person ... in applied settings in the hope that the person has been educated/empowered (i.e., changed) by what they have done during the social interaction. However, the additional layer of awareness provided by the science of Behaviour Analysis in relation to the effects of [laws of learning] is considered anathema. This is unfortunate for it impacts directly on the benefits to be derived from the value of how awareness of the influence of [laws of learning] contributes to the outcomes of education.

Misinformed objections to the use of behaviour analysis in the field of autism imply that we should not be aware of the role of [the laws of learning] when we interact with children. But increasing our awareness is an important goal to be achieved by any science and by any person. To adopt an alternative position would imply that all parents owe their children an apology if they seek to improve their awareness of how best to educate them. Are they meant to say, “We didn’t know that by educating you, by preparing you for life we were inadvertently ‘not accepting you as you are’?” Or maybe we are supposed to say “Please forgive us for designing experiences for you, for toilet-training you, for helping you manage tantrums, for teaching you language, for expressing our love in numerous practical ways!” (Keenan, 2016)

Currently, 45 States in the USA (as well as the District of Columbia and the US Virgin Islands) have introduced laws that mandate insurance coverage for implementing an ABA program if parents choose to do so. That means on 47 separate occasions it was concluded that there was sufficient evidence to warrant the justification of a new law. This is a phenomenal endorsement of ABA and indicative of a major social movement in the country where ABA emerged as a new scientific discipline. A recent article in the Autism-Europe Newsletter (LINK; Howlin, 2013; 70 years of research on autism: How far have we come?) made no mention of this social movement. This should ring alarm bells for parents because it means something is being hidden from them. To make matters worse, for many in Europe there is precious little written on ABA in their native languages. The concept of Fake News is very topical at the moment in political spheres. Parents need to remain alert to the damaging effects of fake news in relation to ABA. Of course, it may be too late already. They might believe that all those states in the USA who enacted new laws have been victims of fake news."



Prof Mickey Keenan is a Fellow of the British Psychological Society and a Board Certified Behaviour Analyst. He has received numerous awards for his community work in helping parents of children with autism including the Award for Promoting Equality of Opportunity (British Psychological Society), the Distinguished Community Fellowship (Ulster University), the Personal Achievement Award (New York State Association for Behavior Analysis), Award for Public Service in Behavior Analysis (Society for Advancement of Behavior Analysis), the Michael Hemmingway Award (Behavior Analysts Certification Board), Award for International Dissemination of Behavior Analysis (Society for the Advancement of Behavior Analysis), and the first International Advocacy Award from Autism Speaks. He is the founder of the registered charity Parent’s Education as Autism Therapists (PEAT; www.peatni.org), and is a Trustee of the Cambridge Center for Behavioral Studies (www.behavior.org).