Jackie O’Kelly has been a Scope Information and Support worker in the midlands for the last 20 years, supporting thousands of disabled people and families with advice and information.
Christmas can be an especially hard time for disabled children and their families. Here, Jackie tells us how her invaluable advice made a life-changing difference to Jenny and her son Harry, who was diagnosed with cerebral palsy just weeks before Christmas.
Thousands of families are expected to turn to Scope for support this Christmas. You can help make sure every family who contacts us receives the support they need by donating the Light up Christmas Appeal.
Obviously this was a worrying time for Jenny and her family. They had not been given any information to help them understand cerebral palsy, which is hugely complex, or how Harry might be affected in the future.
Jenny had a lot of questions and no idea what help the family might need to support Harry at home and at school, or how to go about getting this.
Jenny was finding it quite hard to explain Harry’s difficulties to other people and make them aware of the help that he needed.
How I worked with the family
I explained to Jenny about Harry’s cerebral palsy in the simplest of terms. I also sent her some information so she could keep re-reading it until she got a better understanding of his difficulties.
I also thought she could show this information to other people if they too were struggling to understand his cerebral palsy, such as teachers at his school and other family members.
We ended up talking about all sorts of other things that might be helpful to Harry, for example information on useful events that were coming up local to her.
The difficulties parents face
It is so difficult for parents of children like Harry to get this type of information, especially if their child goes to a mainstream school.
As a result many parents like Jenny end up feeling isolated and unsupported. Often they miss out on vital sources of help and support that could have made their lives and their child’s life so much easier.
If ever I now see something that might be of help to Harry or his family I always try to send it Jenny’s way. As with most other parents their journey is ongoing and different needs and issues will undoubtedly crop up along the way.
My work continues
Because of all of the recent changes to social care that have affected disabled people, I am receiving more and more requests from people who are often quite desperate about their situations.
They simply do not know where to go for help, as many local advice agencies who have been badly hit by the cuts have been closed.
I am currently supporting around 30 disabled people and families, with the numbers increasing all the time.
Christmas for disabled families
Christmas can be one of the most difficult times of year for disabled people and their families.
There is the sheer expense of it all as bills are at their highest. Also a lot of services quite simply shut down over this period, or run services that are so thin on the ground that all but the most urgent of cases can be dealt with.
I have seen this happen year on year and the stress it can create in families is enormous.
Thousands of families are expected to turn to Scope for support this Christmas, which is why we’re asking you to donate to our Light up Christmas appeal. With your help we can be there for every family who contacts us.