I was honoured to be invited to speak at a super conference in Birmingham on 2nd November hosted by the UK’s National Autistic Society and the Sensory Integration Network. We know that many people who have autism and an intellectual disability also have sensory integration difficulties. The conference was an in-depth look at all aspects including; the latest scientific research, the biology and brain imaging now available, and practical ideas and approaches to help with learning and everyday life.

Sensory integration disorder or sensory processing disorder is where the senses (touch, feel, taste, smell, hearing, movement and balance) of your body do not work together as they should. Here is a simple video to explain it.

As well as communication, sensory integration disorder is thing that affects our son Stephen’s life and our family’s life the most. Over the years (Stephen is now 13) I have found it essential to try to understand Stephen and where he is coming from. And I am learning everyday.

The organisers of this conference are top class. The National Autistic Society is the leading UK charity for people with autism and their families. They provide information, support and services and campaign for a better world for people with autism. I especially like their logo of Accept difference. Not indifference.

Sensory Integration Network UK and Ireland is a voluntary organisation of professionals working together to promote education, good practice and research into the theory and practice of sensory integration, specifically the work of A. Jean Ayres who was the first occupational therapist to research and come up with specific therapies.

All the speakers were excellent and some of the conference is available at this link.

Two of my favourites are the presentations by Steve McGuinness , NAS Trustee, Councillor and Autism Consultant and Julia Dyer Physiotherapist and Lecturer.

Steve has autism and gave a fascinating insight into how senses are different than ours. I was interested in his suggestion around the words 'challenging behaviour'. Our son Stephen has this label attached to him. Steve suggested we change the order of the words to ‘behaviour that challenges’. In other words, there is a reason for the behaviour and 'we' (society) are challenged to understand it. We need to listen, learn and understand. He used this video to explain sensory integration difficulties.

Julia talked about movement difficulties and the affect it can have on social skills, self esteem and friendship building. She brought three members of the audience to the front and asked them to button a man’s shirt. Two of them had gloves on to demonstrate what it is like when you have fine motor difficulties. (This is the case for many people with autism and intellectual disability) and one had no gloves on. The two with gloves on (ski gloves and woolly gloves) struggled to complete task. Julia was trying to illustrate that you need all your senses to carry out everyday coordination tasks. Later she spoke about how the audience member felt after failing. It was very powerful to put ourselves in the shoes of someone with a disability and to appreciate the impact it has on your self esteem.

Videos of Steve and Julia’s presentations are available here.

The other presenter I have to mention is Ian Jordan. He showed how sight/visual processing is vital for the other parts of our sensory systems. I heard about synaesthesia and metamorphopsia for the first time. Ian connected with me because at home, we would often say that our Stephen definitely sees things differently than we do. Ian showed videos and explained how timing and mapping of vision helps the overall functioning of all senses. We saw how when vision is corrected, things like co-ordination and speech improve – I found it really interesting. For more information see www.jordanseyes.com

Well done to all those involved in organising this event. It would be brilliant if we could have a similar event in Ireland to raise awareness about sensory integration disorder and that it is good to be different!

Best wishes always,
Avril

Our Facing the Future: Individualisation event last week went really well. Kathryn, Emer and I were nervous as we don’t organise events like this on regular basis! We were delighted with the attendance of more than 230 people.

Minister of State Kathleen Lynch introduced our evening, giving us the government’s perspective on how things will change in the disability sector. We then had a very interesting presentation from Bairbre Nic Aongusa Director of the Office of Disability and Mental Health, outlining planned reform of disability services. The stars of our evening were family members, Seamus Greene, Nora Johnston, Catherine Finneran, Thecla Farrell and our self advocate Lisa McNabb, accompanied by her key worker Theresa Nolan. They shared their stories and inspired us of how they have ‘individualised’ the services they receive.

I am delighted to be working with my two friends Emer and Kathryn to organise another information evening for people with disabilities, their families and for professionals working in the disability sector. This time it is on ‘Individualisation’, venue: the Radisson Blu Hotel, Limerick on 17 October 7:30pm.

The Minister of State for Disability, Kathleen Lynch will do the opening address. She will be followed by Bairbre Nic Aongusa. Bairbre is the Director of the Office of Disability and Mental Health. The key note speakers are family members and a self advocate, who share their stories on how they are doing things differently.

The reason it is important to know about this, is that the Irish government is changing its policy in the disability sector towards this new model of ‘individualisation’. At the moment, the government takes tax payers money and gives funding to agencies called service providers to provide services and supports to people with disabilities and families. e.g. our son Stephen (Stephen has a rare chromosomal disorder and autism) needs therapy services (physiotherapy to help him walk, occupational therapy to help with how he uses his hands and to identify what equipment he needs, as well as speech and language therapy to help him communicate). Also our family receives respite services, this means Stephen is taken care of for a few days per month to give us a break. The money needed to provide these respite and therapy services is given to our local service provider. We have no influence over how much it is or who gets it. We do not know if Stephen’s care represents €1,000, €10,000 or €100,000 of the service providers’ overall budget. In line with international best practice, our government is planning to change to a system of ‘individualisation’ where families and people with disabilities will have a say in where funding goes.

However, there is much more to this than just money. As a result of the system and of our culture, traditionally, people with disabilities and their families took what was offered to them by the state and felt grateful for it. As a Mum, I know this feeling very well.

As part of the organising of this event we have met some truly inspirational people. It has been a journey of learning for me, a growing awareness of how in many ways I was letting the words ‘disability’ define my son Stephen’s life. Stephen is not ‘lesser than’, he is different.  This is also about accepting the individual as themselves, and as a member of their community. That people with disabilities are individuals with gifts, hopes and dreams like everyone else.

Stephen is part of a community and his daily life should reflect this. Stephen has lots to give and I need to let this happen. I am very protective of Stephen (actually over-protective is more correct!) and I have to allow people into Stephen’s life. This is not easy, as I am used to people being paid to spend time with Stephen. This is a mindset change for me and also for our community. We need our community to welcome Stephen, for who he is and make him part of community life.

Click here for more info and to register for the event. Please register early as our previous event booked out over 2 weeks in advance.

Please could you spread the word about our event, we look forward to welcoming you on the night!

Best wishes as always,
Avril

I recently attended this excellent conference in Maynooth Co Kildare. It was organised and run by the National Federation of Voluntary Bodies (a national umbrella organisation for voluntary/non-statutory agencies who provide direct services to people with intellectual disability in Ireland) The two key things that struck me are in the title of the conference. Firstly, people with disabilities want ‘ordinary lives’ and surely our society can provide this? Secondly, the word ‘values’, sometimes we become disconnected with what is really important. It is essential that underlying everything is a common set of beliefs about doing what is right.

The theme of the conference was how in a time of economic crisis can service providers deliver better quality services to people with intellectual disabilities. The keynote speakers were Carl Dunst, John O’Brien and Gerard Quinn, all renowned international experts in the field of disability. You can see their presentations at http://www.fedvol.ie/Conferences_and_Presentations/Default.1689.html

One of the best speakers of the day for me was Kathleen Gittens. Kathleen has an intellectual disability and is Chairperson of Seasamh. This is a group from the South East area of Ireland run by and for people with intellectual disabilities. Kathleen told us about how with training she and her colleagues in Seasamh now have the confidence to have their say in decision making by service providers. ‘Nothing about us, without us’ were her key words as she explained how people with intellectual disabilities want ‘ordinary lives’ (nice home, friends, work, social life, education, play sport etc).

John O’Brien is an inspirational speaker. He spoke about with financial resources reducing, how we need to look to families, communities and people with disabilities and what they can all contribute. He uses the word ‘allies’ to describe the role of services providers. Service providers are not about buildings, but instead about becoming ‘allies’ to the family and links to community and services. He did not underestimate the challenge we have ahead of us and said it is important to understand that change is difficult. I liked his analogy of going across a bridge together, not knowing exactly what is on the other side but families, services providers, people with disabilities and community, doing it together.

One of the other major discussion points of the day was how can service providers provide better quality services. Our government here in Ireland has stated that they are going to change how funding is given to the disability sector. At the moment, all funding is given to the service providers and they decide how it is spent. In the future, funding will be allocated based on individualised basis and the person with a disability and their family will have influence over how it is spent. The Genio Trust is helping make this happen and we heard inspirational stories of examples of people with intellectual disabilities moving out of institution settings and becoming active members of their local communities.

On a personal level, I learnt a lot and I believe this change in policy towards individualised budgets gives me confidence for better services in the future for our son Stephen. There are huge challenges to implementing this, but I have no doubt that it is going to happen, not because it costs less but because it is the right thing to do. Values are important and all services ensure equal rights and ordinary lives for people with intellectual disabilities. Supplying services in the disability sector is not about walls and buildings; it is about providing supports where members of staff become allies for people with intellectual disabilities and their families.

Best wishes as always,
Avril