Championing change

Written by mum, Kate

Kate

Kate

I have three children. My youngest boy is 6, a middle girl who is 10 and my eldest Alfie who is 13. All my children have one-page profiles and all for different reasons but it was because of Alfie, who has Down’s Syndrome and is on the Autistic Spectrum that I first heard about them and their powerful ability to communicate, advocate, and direct support.

I live with my family in rural east Suffolk by the coast. It is beautifully scenic and there are some wonderful things about our community that I wouldn’t change a bit.  However, and I don’t feel too bad in saying this, we are not exactly cutting edge in the learning disability and autism support world.  I go elsewhere in the country and person-centred practices have been high on the agenda for some time. Where I am, people still frown and squint slightly the first time they hear the term. Not to say that they are not open to it or indeed all-embracing of the opportunities that come from person-centred tools, they just don’t know about it. I’m hoping that I can help change this and therefore change the community that Alfie will live in so that he has a happy and fulfilled life and a future that we can all look forward to.

Up until Alfie was 9 years old he attended a mainstream School. It had felt important that Alfie was given the same opportunities as everyone else and at the time we thought that sending him to the same place as everyone else would ensure this. It didn’t. The school were not equipped to support Alfie well. Out of the 5 teachers he had during his time there only 2 tailored their lessons for Alfie’s Support Assistant to teach him one-to-one. Because of their lack of understanding of who Alfie was and what he needed, rather than being included, we found that he was being excluded and gradually becoming more and more isolated from his peers. It reached a point where he wasn’t allowed to touch or play with anyone –  Hardly the best thing for a young boy’s confidence and social skills.

We felt that our only other option was a special school for children with moderate learning disabilities. We knew at least here that Alfie would be with people who understood about his specific needs and would encourage and teach the social aspect of school as well as support him in his learning. In many ways this new environment has been better for Alfie.  Now that he is older, his lessons are just 45 minutes long and then he gets to walk to the next class – this type of structure, scheduling and activity is very good for him. Sadly though, despite this being a school designed for children with different support needs I still feel they are lacking in their approach and certainly not at the point where they could be described as personalising the support or the education they offer their pupils.

Alfie is fluent in Makaton but chooses not to use it. He communicates mainly through behaviour and for the school ‘behaviour’ seems to equal ‘bad behaviour’. I regularly get notes about ‘incidents’ that Alfie is involved in – usually relating to him being over familiar with another pupil, hugging them too tightly, or holding on to their earlobes (he gets a great deal of comfort from earlobes). I never hear about the why? What led up to the behaviour? How he was in himself immediately before or after? What can be understood about what he might need from how he has acted?  I just hear about the what. To me this shows a real lack of understanding about Alfie, who he is, what is important to him and what good support looks like (all the things that are recorded on a one-page profile).

I’ve recently started to co-facilitate the ‘Better Life Programme’ – an 8 session  training course for families to introduce them to person-centred thinking tools, what personalisation actually means and how to access things like personal budgets and support from Local Authorities. It is a course that I myself attended and it changed my world. Alfie’s school has given us permission to use their building to deliver this to parents. It is my hope that the learning will spill out into the corridors and become absorbed by the foundations of the school (or maybe that the head teacher will sit in on a session and take something away from it) and this will lead to change.

When Alfie was younger I thought we had to fit him into the world that already exists. I now know that it is the world, our communities, schools, places or work, people’s perceptions that need to change to fit in with him and all the rest of our children. I give Alfie’s one-page profile to people because I know that if they read it they will understand him better, be able to make  a few small adjustments and this will automatically improve their experience and time with him. Alfie’s school were very positive about his profile when I first introduced it and I strongly believe that if they learnt more about this approach and adopted it for more of their pupils it would change the way they support and teach because they would see and understand each child for the unique individual that they are.

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