Disabilities Archives - The Sensory Seeker

Personalisation in Practice – Supporting Young People with Disabilities through the Transition to Adulthood

Personalisation in Practice is a book that describes how the right support into adulthood made the difference to Jennie, a young person with Autism and learning difficulties. Personalisation in Practice tells of the benefits of person-centred planning which ultimately led to Jennie making the transition from living with parents to living in her own flat. The author, Suzie Franklin who is Jennie’s mother, describes the early years, and the struggles to come to a diagnosis, before explaining exactly what person-centred planning is. Suzie Franklin talks us through Person-Centred Reviews, Circle of support and other steps that were made to ensure Jennie had an easy transition into adulthood.

Personalisation in Practice really provides insights and questions to think about in how people can help guide the journey of someone with disabilities into adulthood. It reassured me about some of the things that I have already done (for both my teen and youngest son).

What my sons with disabilities futures are going to be like, and how they are going to cope, have always been things I think about. Any help on what things can be done to help this transition into adulthood are always welcome, and Personalisation in Practice provides this. Our oldest son has Asperger’s Syndrome and is seventeen years old. He is doing very well academically, he has a part time job (in a familiar place) and is even beginning to socialise with friends. The biggest breakthrough for us is that his hygiene standards have improved, and a lot of his behaviours we are more and more attributing to his age as opposed to his disability. It provides us with so much hope for the future of our youngest and we hope that he is on the same path. Personalisation in Practice also has a lot of resources for advice for families, schools, providers and local authorities at the end of the book.

Disabilities and the transition into adulthood

There are lot of personal touches to the book as Suzie Franklin lets us into their lives in order to help support others. I think that parents with children like Jennie will nod understandingly throughout the book. Such as Jennie being “honest” and saying what she thinks, not worrying what other people think. Some parts will touch their pain, their fears, and other parts will make them smile and give them hope for the future. I loved how positively Jennie was described, loving life despite any difficulties she may face.

ISBN: 9781849054430

Jessica Kingsley Publishers

I received a free copy of Personalisation in Practice for purposes of review. All words and opinions are my own.

Many people do not like themselves, or their children, being labelled in terms of disabilities. I often hear people say that they prefer to say that my child has Autism as opposed to they are Autistic. But when faced with the question as to whether they would “cure” ( I prefer remove) the disability or not, the answer in my experience is often no. It seems that there is some kind of acceptance that the disabilities are part of who the person is, and if you were to remove the disabilities it would be like removing a part of that person.

People with Disabilities are special in their own right

I have to admit I can see how my children’s disabilities make them special, in a different kind of way to my children that do not have disabilities. They can bring so much warmth and happiness to the World, teaching us a thing or two. With my own son’s developmental delay he really has taught me the beauty of the small things in life (for example he is just zipping up his own coat and pulling the Velcro across on his trainers).

In many respects I can see how my oldest son having Asperger’s Syndrome has many advantages. I do not think the nastiness of some people is as obvious to him, which is beneficial to him as he’s not as easily hurt. As a parent I find that once we established the routines, the boundaries and the wants, that he is a pretty dam perfect teen. He is doing well and so very focused academically – it’s all very black and white, he is meant to try hard to get where he wants so he does. I am lucky in that I do not to have to worry about him doing things like NekNomination, because it is not a safe kind of behaviour.

Also my children without disabilities have to be aware of the additional needs of their siblings makes them special too– more tolerant, patient, kind, caring and understanding. So I can see the argument for not taking away the disabilities.

Reasons for taking away the Disabilities

Having to anticipate seeing again some of what my oldest son has been through, when he was younger, with the fresh eyes of his youngest brother makes me think I’d rather not have to go through it again (for me or for him). From the very basics of feeling I have to justify my parenting choices, to wondering whether he will ever properly be able to communicate his wants and needs to others.

If the disabilities could be removed then the fear for the future would be less (I mean every parent worries about something, don’t they?). Just wanting to know that he stands a good chance of happiness when he is older? Will he be able to learn enough, will he ever be able to take care of his basic needs (diet/toileting, keeping himself safe), it would mean him not being vulnerable and misunderstood by people. Not wanting him to be excluded and different (even at this basic level of not being able to access the curriculum without support). These are the very reasons I fight for every bit of support to help him find as normal way as possible through life’s pathway.

Hope for the future with Disabilities

My sons’ disabilities are not going to go away, I just want to add that I am hopeful for the future. Seeing how far my oldest son has come, with the right support is amazing. My youngest has even more support than my oldest did and is coming on in leaps and bounds. But if I could make it so that they did not need that help then I would. I guess it also depends on what the disability is, but to me taking away the disability does not take away the person – you would let your child have their tonsils taken out if they kept on having tonsillitis – wouldn’t you?

So do you think that disabilities make the person or would you remove them if you could?