Focus Surrey Chairperson, Sue Archdall shares her story of how Focus Surrey came about.
“As a parent of a child with special needs you don't want to leave a stone unturned to help them reach their potential. If you don't go into battle for your child, no one else will. Being a mum who chooses ABA as the teaching method for your child in the UK is not an easy choice. It was not a widely known approach in the UK when we started six years ago, and there were many misconceptions being spread by people who didn't understand the science.
While ABA is widespread in the US and funded through health insurance, in the UK it is only funded for education for children with the most severe needs or those whose parents have battled the court system to prove it is the teaching method that met their child's needs.
We started a home ABA programme in 2014, with myself being trained as the parent tutor. I saw immediate results and became an instant advocate. I couldn't see why it wasn’t widely available and why the principles of play-based therapy weren’t taught at my daughter's school.
The First Focus Surrey Team in 2016
Having made the decision that we felt our daughter's needs would be best met in a specialist ABA school, we had to go to SEN tribunal to get her moved out of the eclectic approach special unit she was currently in. We were able to prove that she had made significant progress in her home ABA programme in one year, far more than she had made in 3 years of her existing school. The tribunal process is incredibly stressful. It is not fun being the parent who raises their hand to say the well-meaning local school is not meeting your child's needs, but still having to send your child there day after day, until the court eventually agrees with you.
I went to the first London Focus club in 2015 and felt so blessed to finally find my tribe. People who were willing to challenge the system and to say the education my child was receiving wasn't good enough. Focus South London based in London Waterloo was inspired by Focus Liverpool which was founded by Liverpool mums in 2015. Together we are Focus Autism UK. I knew there was a need for a similar club in Surrey and with my background in graduate training and co-ordination, I knew I had the skills to make it happen.
I wanted to introduce families to ABA in an affordable, non-pressurised way, where they could make up their own minds if this therapy suited their child's needs. I wanted to be able to empower parents so they too could challenge the education their child was receiving and feel confident to question why they weren’t making progress. I also knew that for many families, a home ABA programme was not financially viable and wanted to support parents to teach their child with what they had learnt at Focus Surrey.
What I didn't expect to learn along the way is how much other parents would benefit from us sharing the principles of ABA with them. I didn't expect to hear of a child signing his first words in many years, or others developing new play skills or friendships while at the club. I was pleased to meet parents and siblings who made support networks and friendships and who applied the principles taught at the guest speaker series we provided. The professionals who all came to speak to the families for free, gave advice on how to motivate a child to learn and to develop language skills. The safe space we created had become valuable to many families, who finally had a club or a social outlet for their child where they felt welcome regardless of their child's behaviour.
I also realised our club, which eventually went on to become a charity, was shaping the attitudes and beliefs of our volunteers - many of whom were learning about autism for the first time - and helping them decide future study and career choices.
It's been a long journey since we started planning Focus Surrey in October 2015 and it was a massive team effort to get this far. Along with other co-founder parents including Sarah Kaikini and Krisha Ahmed we had to find a venue, raise funds and recruit ABA professionals. A few advertisements later we found our committed Board Certified Behaviour Analysts Tracey Tibbals and Karolina Gburczyk who have been on this wonderful journey with us since 2016. Behaviour Consultant Kelly Taylor-Saunders was also part of the original team and a big help getting the club up and running.
Since the first term in September 2016 we have had more than 220 volunteers give up their Saturdays over 8 terms; including Tom Rasey who has volunteered for an impressive 7 terms. Other supporters have included Focus Surrey trustees Amanda West, June Goh and Lisa Masarati, ABA super mum Jane McCready, the many ABA, OT and SLT professionals who have given their time for free to be a part of our guest speaker series; and all the parents and supporters who help raise vital funds for us to provide subsidised places for families. It is wonderful to reflect on how we have built an inclusive community of like-minded people who have shared the benefits of ABA to children, families, other professionals and volunteers.
We look forward to the next chapter as the charity continues to grow and support more families."
Sue Archdall, Chairperson of Focus Surrey
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