When 15-year-old Henry suffered a traumatic head injury as a baby, his family’s life changed forever. His mum Sam tells us why Short Breaks are so important to everyone in the family, and how scary it is that these services are under threat.
This is their Secret Life
When our 15-year-old, Henry, was just 6 weeks old, he suffered a traumatic head injury and as a result of that our lives changed forever. We are very lucky that he is with us today, he is a joy to us, a happy, engaging boy who makes us laugh, a lot!
He is also incredibly hard work. He climbs and runs, but has no sense of danger. He has epilepsy, which requires constant supervision and daily medication. He has behavioural issues, and a developmental delay. He has a poor attention span, unless he is watching Mr Tumble, which he can and does do, all day. He is somewhere on the autistic spectrum – the list goes on. He needs help to brush his teeth and wash and dress every day. He does not fit any single diagnosis, every day is a challenge for him and us, but we all do our best.
In order to cater for Henry and his needs, we have to turn down or cut short many events, invitations and activities that most families take for granted such as BBQs with friends, trips to the cinema or picnics in the park. And, over the years we have certainly found out who our real friends are. Many people found him too difficult to be around as his behaviour can be unconventional at times. It is like being with a permanent, but very large and strong toddler. A very charming one at that, but challenging. I can’t just ask a friend to look after him for a couple of hours. I can’t pop to the shops and leave him on his own at home for 5 minutes when I’ve run out of milk.
One of the most important things in our lives is access to a fantastic Short Breaks provider that we are fortunate to have near us.
Henry has been able to access Challengers since he was 4 and since that day, all our lives have been a little bit brighter and easier to bear. Short Breaks enable Henry to play freely, enjoy time away from us, his parents, which is especially important now he is a teenager. No teenager wants to spend any or all of their time with their parents and it is no different for him. Short Breaks mean he is able to develop a sense of independence, his own life.
Henry has never been able to access the usual after school activities that other children do, and like most other disabled children, he doesn’t get invited to sleepovers or birthday parties. Short Breaks are the only opportunity he has to socialise with people his own age.
For us, Short Breaks are a break from Henry and his challenges. They give us a break from Mr Tumble, Peppa Pig, and Thomas the Tank Engine. They give us a chance to re-charge, briefly, and a chance to spend time with our other son, who has so often missed out on our time and attention. They give us a chance to go shopping, watch television, catch up on jobs at home, and so many more things that other parents take for granted.
Opportunities for Short Breaks are limited and services like ours are under continuous threat despite already being stretched and oversubscribed. Without them, we would not be able to cope and nor would so many other families of children with additional needs. Short Breaks mean that we can cope, just about.
Short Breaks are vital to the mental health and well-being of the whole family. Without them, many families would break up and/or the child would require placement in an expensive residential setting. This would mean a bigger and more expensive burden on the State. This is not what families want. We want the same opportunities for our children, we want to cope, to be independent, to be well. We all know that budgets are under pressure, but it is frustrating to see individual budgets being decided and cut with short term goals in mind, without a thought of the cost elsewhere in the system and society, both financially and emotionally.
We want departments to work together, co-produce and consider children and young people with disabilities and their needs as a whole not in little pieces.
This is the part of our life that most people simply do not see.
This is the Secret Life of Us.