Our Voices event 26 June 2014 flyer-1We’re really excited about next week’s event at CHANGE: Our Voices, Our Choices, Our Freedom.
It’s a chance for people with learning disabilities to come together and say what we want to happen about closing institutions.
People with learning disabilities are sick and tired of not being listened to. We want to be a force for change.
Too many conferences are run by professionals. This one is different because it is run for and by people with learning disabilities. People who don’t have learning disabilities are making all the decisions, and they’re not getting it right. We are the experts on our lives- so ask us!
We want to be involved as equals in decisions about services. We believe that people with learning disabilities should live in the community like everybody else. People need support to move out of institutions, and they can learn from other people with learning disabilities who have been through it and live independently.
We want to see the government taking more action, and we’d like to be involved in this. We’d like people with learning disabilities to be represented in the House of Commons! MP’s should spend more time with people with learning disabilities and get to know about our lives. They might be surprised. Come and see the work that we do at CHANGE, where people are involved and work as equals.
This is what it should be like for all services. Come and ask US how to do it!    Shaun Webster and Joanne Kennedy – a paid member of staff and a Trustee of CHANGE

My Son Jack


I have recently joined CHANGE as the new Partnerships Manager.  Seeing the way that my learning disabled co-workers and the volunteers I work alongside have been empowered by being with the organisation inspired me to ask Philipa if I could write this blog.

I am the Mum of Jack. Jack is 22 years old and has Asperger’s syndrome and a learning disability. Jack is not his real name- I have deliberately changed it as he is a modest man and would not like to know his Mum was making a fuss of him!

He was my first child and to be honest I never really bothered with babies before him preferring instead to go out and have fun!

For the first two weeks after he was born, life was packed with incident- people visiting, midwives, health visitor, phone calls, learning the art of nappy changing, feeding etc. After this, most people went away, my husband went back to work and then it was just me and Jack alone in the house for probably the first time. I remember being in a mild panic about this but then we both got into a routine which suited us, and when he was three months old, I went back to work part time with Jack spending the time when I wasn’t there with his devoted grandparents.

The first 18 months of Jack’s life were relatively normal. He did most of the things he was supposed to do at the right times- feeding, crawling, walking etc. He was a pretty baby with a very chubby face and had long blonde ringlets which, unfortunately, never grew back when he had to eventually have his first haircut.

After that first year and half of his life, we began to feel very concerned about his speech. We felt it was not developing as it should be and we noticed that he seemed to be repeating things he had heard without really understanding them. I told my GP and Health Visitor about my concerns, but other than giving him a hearing test, which he passed, nothing else was suggested and we did not we were really being listened to.

At the age of three, Jack went to his local preschool nursery for half days. By this time I had another baby to look after, my second child, a lively daughter called Alice who was to be shortly followed by another son called Ethan. Within a couple of weeks of Jack starting at nursery, his teacher asked to see me and expressed her concerns about Jack’s lack of speech and general language comprehension. She felt this needed further investigation. We were worried by this but also relieved as we felt finally something would be done to help both us and Jack.

After a few tests carried out by our local specialist paediatrics health service, we were told that Jack had a speech and language disorder as well as a developmental delay. His tendency, we had noticed to repeat things he heard other people say straight after he heard them was known as ‘echolalia’. The outlook the professionals seemed to have for him for him and the life he could lead as he grew up seemed very uncertain, although we were told that many children with his condition had a ‘wacky’ sense of humour which is certainly true!

When we were told the news about Jack and, although not totally unexpected, it was still a shock. I remember starting to tell people about it and then beginning to cry. I can only explain it as being a bit like being in mourning because, as a parent, you have to adjust to things not quite working out as you had planned for your child in the ideal world part of your brain. We had to come to terms with the fact that, over the coming years, there were going to be plenty of challenges ahead both for our family and for Jack himself.

At this point and, speaking for myself, I could have gone down on two opposing paths.  One could have been littered with disappointment and negativity thinking of all the things that Jack would not be able to do and how we would be life time carers. The other and, the one we chose to take, was to fight for and with him to make sure he led the best possible life. Failure was not an option and nor was the label ‘learning disability’ going to stop him. Sure, realistically, we knew there would be some things he could not do but we felt sure there were still plenty of positive opportunities out there; we just had to find them.

Jack eventually went to mainstream primary school on special educational needs statement. At eleven we opted to send him to a special needs high school for pupils with mild to moderate learning difficulties where we felt he would benefit from the smaller class sizes and one to one attention. He learned to read and write eventually managing to gain a GCSE in Art- a brilliant result for a boy that still found the world a difficult place to understand and a testament to the support of his teachers and classroom assistants. His echolalia more or less disappeared the older he became. He even managed to go on school residential, as long as he had support- again something we thought he would never be able to do. During this time we involved no one from any statutory organisation, other than the Education authority. We did contact one of the big charities once for advice and support but after being told by their call centre that they were too busy to immediately talk to us, would ring us back and then never did, we felt that we could probably manage to sort things out ourselves.

At 18 and, after a traumatic and distressing period in our lives after Jack hit puberty very late and started disappearing for hours at a time from home, we eventually did have to get in touch with Children’s and Adolescent Mental Health Services. Jack was then diagnosed as being on the Autistic Spectrum. In particular his behaviour showed the classic traits of Asperger’s syndrome and this diagnosis was now coupled along with his learning disability. This time we were quite pleased with the result. I have to say the difficult truth is that having a ‘label’ such as Asperger’s makes it so much easier when you are talking to other people about Jack rather than just the general term of learning disability.

Since then, and after Jack left school, he has been at college on various courses and is doing some volunteering. He is a very tall lad 6 ft. 5 inches to be precise and towers over me and his Dad. He independently travels and in facts collects bus timetables. He loves libraries, churches, art galleries and classical music. He always knows when there is a local free music concert going on and takes himself off with his trusty sandwich bag to go and listen. Those people, who spend the time to get to know him, like him because he is very chatty and polite. He loves wearing good clothes and in a particular nice shirts and smart trousers.

Last week, we found out that Jack had managed to secure a part time job. With the support of his college tutor and through gaining work experience by his volunteering, he had built up the confidence in himself to be able to go along to an interview. His tutor, who works with other learning disabled students, is absolutely thrilled, largely because Jack is a relatively rare success story. For our family and having listened to the professionals being so negative all those years ago about what Jack would not be able to do; we feel this is a real cause for celebration.

In 2010/11 only 6.6% of adults with a learning disability were in employment. This is a shocking statistic when you think of the positive effect it can have on someone’s health and wellbeing to have a job. In addition, being in work and feeling valued for their skills  should enable people with a learning disability to no longer be as reliant on having to access high cost Health and Adult Social Care Services. Whilst working at CHANGE, I have seen for myself the impressive results of people with learning disabilities being employed on an equal salary to non-disabled colleagues. If only more employers like CHANGE and the organisation employing Jack, could adopt this approach, wouldn’t our country be a more equal and fairer place to live in?

I hope that any parent who may read this and whose child has been diagnosed with a learning disability can take some heart from our story and from Jack’s ability and the skills he has gained through the years to be able to lead his own life. I hope Jack’s story-so far-  inspires other people with a learning disability We and the rest of our family continue to support  him to make his own choices and to meet the daily challenges that life throws at him.

I want to thank Philipa for giving me the chance to write this blog.at_computer