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Barbara Follows

Barbara Follows, M.Ed

"My philosophy is that every child is unique and, whatever their differences, every single child matters."

ADHD Awareness Week, 19th–25th September 2010
Did you blink and miss it?

The 19th-25th September 2010 was heralded as the BBC's school season, showing such dramas as Excluded and documentaries that included Gareth Malone's Extraordinary School for Boys, John Humphrys presenting Unequal Opportunities, plus The Big School Lottery and Britain's Youngest Boarders. All captivating, thought-provoking and emotive. Resulting in a perfect lead for the following week, when the University of Cardiff published their findings on genetics and ADHD (www.cardiff.ac.uk). But how many of you reading this article were also aware that the week of the 19th September 2010 was Europe's ADHD Awareness Week? Certainly not the prominent members of the research faculty at Cardiff, nor the programmers at the BBC. On this occasion newspaper journalists did not seem to have their ears to the ground, and even the National Attention Deficit Disorder Information and Support Service (ADDISS), as far as I am aware, only put a mention on its website, www.addiss.co.uk.

Why?

In the current recession smaller organisations that specialise cannot always keep up with the demand so, in a way, it looks like the need isn't there. It is, but there are fewer opportunities to promote or publicise the lack of support and resources as budgets are cut at all educational levels. So even ADDISS is overwhelmed and underfunded and, therefore, was unable to promote the Awareness Week.

In the long term this will have significant effects both financially and on society as a whole, because if the profile for ADHD nationally isn't raised, then resources won't ever increase.

In 2006 the UK National ADHD Alliance folded through lack of funding. This was a representative body for ADHD organisations and support groups. ADDISS is the London-based information service which provides books, information and conferences, but it is equally understaffed.

The Studio ADHD Centre

Since my return from working with VSO in Namibia I have kept my grand title of Education Adviser but am now working with an ADHD charity based near Dorking in Surrey (see photo above). The Studio ADHD Centre (www.studioadhdcentre.org.uk) is, as far as we know, unique in the UK for its therapeutic, holistic approach to preventative work with young people with ADHD. This is not an advert, as we have more than enough work and clients to keep the small staff occupied many more hours of the day than they are paid for. It is merely a sharing of what we perceive as good practice, motivated by the abysmal lack of awareness of the Awareness Week!

The Studio is finding that educational professionals cannot see the big picture and is, therefore, constantly hassling for funds to provide learners with alternative programmes, which are proven to work and, in the long term, save the LEA a lot of money. But persuading the LEA and schools to invest now for the future is an almost impossible task. Maybe through the media and such avenues we could help people involved in education to understand the rationale behind these programmes and, more importantly, enable learners and teacher's access and funding, so that they can use them.

The Studio is a charity providing specialist services to children and families who have Attention Deficit Disorder and Asperger's and special needs. It has been operating in Surrey for the past ten years and provides excellent services to a high standard. Its difficulty is a high, though not exclusive, dependency on the local county council for funding. This support service can, and has, saved thousands and thousands of pounds for the County through preventative work, but the County continues to say that it has no long-term money to fund the service. We say that it cannot afford not to fund it!

I hasten to add that this article is not attempting to "bite the hand that feeds it". County councils are under enormous pressures and strains and, in such a climate, being proactive whilst dealing with the here and now can seem to take on Herculean proportions. But let's raise awareness, even if we are a few months too late!

Finding funding for working with young people in and out of mainstream education, their families and the schools is doubly difficult in the highly competitive areas of Trusts and Foundations, who often won't fund areas that are meant to be statutory obligations.

The Studio is proud to be part of the voluntary and charitable sector, but specialist services cannot survive on volunteers alone, especially when meeting complex needs and having to fulfill all the requirements of the Charity Commission. We are struggling to continue to deliver services under increasing demand as the NHS, Social Services and Youth Justice Services are cut back. Parents are desperate for help:

Case study 1

One of our "saviours" has been a charity called The Studio run by a woman called Nancy Williams, who is an NLP practioner and Cognitive Therapist. She has worked with ADHD and mixed-syndrome teenagers for well over 15 years and at any one time she's got about 100 kids on her books. We found it nigh on impossible to get any form of useful help from the NHS Mental Health services. The Studio supported and advised us, counselled us and our daughter and persuaded her from a path of refusing school. The charity liaises with schools and education authorities as advocates for the children. It organises events and stimulating activities for these children who are adrenalin junkies! These children when left unhelped, unchecked, can end up as tomorrow's criminals. They are much more likely to get into alcohol and drug abuse and begin a life of crime. The cost of a place in a Pupil Referral Unit is absolutely enormous – and when the kids drop out of school, they often end up in these. The Studio has worked with many youngsters to keep them in mainstream education. And it works!

If only the people who supply its funding or lack of, would take off their blinkers!

 

The Studio is increasingly concerned about the large number of referrals that we are receiving from parents, schools and NHS pediatricians, countywide. These referrals are for children and families who have complex needs and circumstances and who have often been failed by the numerous agencies that have been involved with them. We are also shocked by the apparent lack of communication between agencies, the limited understanding about the condition of ADHD and the frequent absence of co-ordination and continuity in their care. It requires an enormous amount of work on our part to sort out what has gone on previously, and to plan and implement a suitable programme to get the youngsters back on track and to help their families to cope.

The Studio defines, develops and implements Alternative Learning Programmes for young people who have been excluded or are at risk of this happening. We help young people to find appropriate educational provision and support them and their families to maintain that placement by providing parental support, including home visits, telephone contact, family meetings and 24-hour crisis intervention. We also offer school support, such as putting manageable packages forward that may include work experience placements, statement reviews, reduced timetables, telephone interventions within school hours, managed moves, classroom support, or contacting and advising appropriate provisions. The Studio also advises and assesses the need for medication when appropriate and liaises with GPs and pediatricians.

In addition, we run activity programmes, which range from fishing to assault courses and the Duke of Edinburgh Award scheme. The purpose of this intervention has been to stop the cycle of failure that can take hold of these young people and their families and prevent negative social implications that are both far-reaching and extremely costly to local authorities.

A case study of one young person in our care who did not receive early intervention cost the taxpayer in excess of £700,000 as we tracked his descent through various different agencies and, regretfully, finally to prison.

Case study 2

My son has had a really hard life and at 10 was in a care home. In that time he got a criminal record. I managed to find the ADHD Studio which helped me to get him diagnosed as having ADHD and returned back home to me. Since that time he has been doing well but has seriously been struggling at school.

Over a year ago the school asked for a restorative justice meeting due to his behaviour and the way the staff felt, as many of them wanted to press charges against him and didn't want him to return to the school. The meeting didn't work, but in January this year I went to school with my son daily to help get him back into education. All was going well and at the start of May he starting going alone.

It all went wrong again. In July he assaulted a female member of staff (there's a long story behind it) and she has pressed charges. He had an interview at the police station in early September and that was left with them phoning the teacher again to see what she wanted to do. I have not sent my son back to school as we do not know what is happening.

Today I had a visit from the EWO, who is saying my son has to return to school even though this matter isn't dealt with. Again I've refused and am asking for an emergency annual review, as I don't believe he should return there, knowing that some staff don't want him.

When I asked why he hadn't been permanently excluded from the school I was told, "because it is too expensive to find him other educational provision". So as far as I can see they are happy to have him back, even if that means him being arrested and charged and potentially ending up in a detention centre.

The ADHD Studio have supported me through all this and have put a plan forward to the school, which is three days' worth of education whilst an alternative school is found, but his present school are refusing to help fund it. I don't know what else to do or who to turn to. I'm scared that at the age of, now, 13 my son will be forced down the criminal route, and I'm just as scared that the Studio will not be able to afford to work with us anymore.

 

The alternative programme that the Studio was offering to this young person consisted of an angling project on Wednesdays, a motor project on Tuesdays and individual mentoring, library for academic work, and climbing on Thursdays. The groups taking part would consist of no more than four young people and all the activities had educational outcomes, as well as confidence and self-esteem building.

For instance, at the climbing sessions the young people are encouraged to overcome their fears and are led to believe that they can achieve something that initially they find so daunting that they think it beyond their capabilities.

The professionalism and communication of all the people involved help them to achieve way beyond their comfort zone and they begin to feel proud of their achievements. However, this feeling can be difficult for the young people to accept and they often want to go straight back to their previous comfort zone of failure.

This particular programme has a method to cater to that response. The library session takes place before the climbing session. This is the point when the young people are encouraged to start building a portfolio of their achievements, and they also learn to study in an environment with an expectation of calm, quiet and participation. Although we are not a teaching provision, they take part in online certificates, such as first aid, food hygiene, basic maths and English.

Then, after the climbing, the young people engage in a walk for about 20 minutes. This is beneficial because after having experienced a sense of worth, the aftermath can include feelings of anger and defiance, which can result in them acting out. We help them through this process.

The setting of the river, the walking and the new-found confidence often gives these young people the ability to discuss issues that were previously hidden. They seem to be able to open up and talk honestly about the issues that they have or are affecting them in their development. The environment and the physical activity act as a facilitator, where offices and classrooms do not.

Keeping one child in mainstream school for three years saves approximately £30,000 per year over an alternative specialist placement. That £30,000 saving would provide a full-time staff member at the Studio to keep 30 children in mainstream school and also:

  • develop their future potential, which might include natural leadership and entrepreneurial characteristics;
  • support teaching staff;
  • prevent family breakdown;
  • guide them away from drug and alcohol abuse; and
  • keep them out of the youth justice system.

At the moment, without assured income it is almost impossible to train and sustain staff. The Studio relies on an enormous amount of goodwill from its small, dedicated, professional and highly experienced personnel. But there is so much more that could be done and achieved with adequate reliable funding.

Case study 3

To try and cut a long story short, my eldest son is 13 and has ADHD he is impulsive and gets frustrated at everything and lacks the "normal" inhibitions that other kids have. School was really difficult, to say the least!! He was expelled and put into a Pupil Referral Unit, where he has learned how to be even more challenging! We hit rock bottom big time, with literally nowhere left to turn, and my family were offering no support!

I came across the Studio ADHD Centre near Dorking, which we were so lucky to get a place in. It is a charity, relying on donations, run by an amazing, feisty, quirky and very hard-working lady called Nancy.

Boy fishingThe Studio only has four part-time staff who support almost 200 young people aged 10-18 and their parents, and regularly work weekends and evenings. They offer us encouragement, acceptance, guidance and positivity but, most important of all, hope for the future. My son is doing the D of E Award at rock climbing, which he's already broken records at, so he's buzzing from it all, as he never has people say "well done" to him. He is also taking part in a 12-week fishing course at a beautiful lake. It is so calming for him. He has made new friends. They help and encourage each other but, most importantly, aren't judged!! They are very intelligent, clued-up kids who thrive on learning about the fishing, etc., but who have been labelled and punished their whole lives for not being able to sit still or focus. Hence they have pretty low self-esteem. For the first time ever he was trusted to go night fishing with the group. He had a fantastic time and caught a 9lb 10oz fully scaled mirror carp and was very proud of himself. It's lovely to see. These kids are strong-willed, and Nancy says they are either "leaders of a gang" or "captains of a team". The Studio promotes good leadership qualities of social skills, respect, following instructions, self-control, self-discipline, self-respect, to name but a few, through fishing and outdoor adventures.

They take ten crazy ADHD kids at a time paintballing and never have a problem with them because Nancy uses the "Ferrari Theory", which explains to these kids that their brains are like high-performance racing cars and need extra skills and careful maintenance to keep them ticking over. I'm not so good at explaining this; my son or Nancy is better at that! The Ferrari symbol of the stallion is also used, as she says you can't break their spirits as they rear up and run – which is true - you have to treat them with respect.

Basically, I feel like it's a real blessing that my son and family are allowed to be a part of the Studio, and hopefully he will be able to mentor kids in his position in years to come and try to change the negative image of ADHD. The Studio is majorly understaffed and has more referrals than they can cope with. As Nancy says: "Which crying mum do you say 'No' to?" I'm glad she said "yes" to me and my son.

 

I hope that this article has raised awareness of ADHD and shown how successful alternative programmes based on therapeutic interventions can be. At the risk of exposing passion and commitment, it would be a dream come true if the Studio's blueprint could be replicated in other counties across the UK. Plus, if enough organisations through adequate funding were able to be proactive, we could, maybe, during next year's ADHD Awareness Week, highlight the benefits and successes of young people and adults with ADHD rather than the negative and sceptical stigma and inertia that seem to surround it at the moment.

(Published in SEBDA News, issue 23, spring 2012)