There’s myself and my husband, William. We have 3 children, Will who is 14, Joseph who is 9 and Anna who is 5. After a traumatic birth, in which we nearly lost Anna, the brain injury has resulted in quadriplegic Cerebral Palsy. So whilst Anna is a very happy and healthy 5 year old, she is unable to do anything for herself. She uses a wheelchair with fully supportive seat, needs all her food blending and uses a communication book as she is unable to speak.
In some ways our family life is quite normal, we do all the usual ‘family’ things: school journeys, homework, days out, holidays, housework, watching tv, having friends over, going to the park etc. But, because Anna needs one to one assistance to do everything, it means that someone always has to act as her carer. She needs help to play, to eat, to drink, to go to the toilet, to get dressed, to move from one room to another, to choose what to put on the tv, to get ready for bed, to brush her teeth, to communicate, to do her homework, etc.
This means that whatever is happening in our family, someone always needs to help Anna do whatever it is she wants to do. For example, if she wakes early at the weekend and wants to watch tv, or play on the Xbox with her brothers, she needs to wake us up, then we need to get her out of bed, take her to the toilet and take her downstairs. She has recently got a switch adapted controller for the Xbox, which means she can participate in this, but it still needs someone to get her into her supportive seating, set the game up and operate the other controls.
Another example is when Anna gets in from school, most children would happily play while mum/dad got the dinner ready, but because Anna can’t do this, either myself or dad (whoever is there) help her with her reading homework, any playing she wants to do, then make sure she has had her evening tea and get her ready for bed. Only then can we make dinner for the boys, which means we rarely all eat together (Dad works several evenings a week so leaves 6.30pm-ish) and the boys frequently end up eating quite late.
Socially, we don’t tend to have friends over for Anna, just because of the difficulties around play. Our house has very little play space due to the various pieces of Anna’s equipment such as her chair and standing frame. There are limits to the places we can go as a family, due to the access. A theme park is no good as Anna cannot go on any of the rides, and even a trip to the beach is difficult as wheelchairs and beaches don’t really mix. Even if we go out for a meal, we have to take Anna’s food with us, and someone will have to feed her whilst everyone else eats.
Personally, everything is physically very hard work. You cannot ‘just pop to the shops’ as it requires taking Anna to the toilet, getting her dressed/shoes on, getting the wheelchair out, and getting her into the wheelchair. Even the shop part is an added strain when you have to manoeuvre Anna’s chair around it and juggle a basket or bags. It can be very emotionally draining at times simply because you realise how hard everything is for her, and will continue to be. For all the world she would love to be independent, choosing her own games, running around the playground and nattering away. It must be even more frustrating for her than it can be for us.
It is also very time consuming, so there is never time to do anything other than the absolute essentials for ourselves, and we frequently go to bed late just to get everything done. This is aside from the paperwork such as claim forms, medical appointments and school review meetings that we attend for Anna. Also dealing with questions from her therapists, co-ordinating and chasing equipment requests. We also do the usual parent meetings and so on for the other children, though most of the time they really do just have to get on with things themselves. We both work, so this can take some juggling to co-ordinate everything.
When we first heard about Challengers I really wasn’t sure how Anna would like it. She was just 4, so quite small compared to many of the children. Although she was at 2 nurseries at the time (a special nursery and a mainstream) she knew her carers there very well and they are very structured environments. Anna can feel quite vulnerable because of her physical difficulties and her inability to communicate easily with someone she doesn’t know. I only booked her in for half days to begin with so we didn’t have to deal with the eating issue. However, I now really look forward to her days at Challengers and the first full day that she was there we took the boys to see the new Star Wars film and had lunch in town – amazing!
Anna LOVES coming to Challengers!
Anna likes playing role play games – so tea sets, shops etc. She can’t quite believe her luck that she has a whole person for a whole day whose sole purpose is to play with her! She also likes anything messy like paint, sand and water play, and loves the swings.
If Challengers wasn’t there I honestly don’t think we could manage. The holidays would be very long for Anna, if she was just at home with mum and/or dad. She’s really social and bright and we just cannot provide that fantastic stimulating play environment at home. It also gives myself and dad a day of not having to do mealtimes, toilet trips, lifting into/out of equipment, means we can go shopping really easily and means we can do something that our other children like to do.
It gives us all something to really look forward to.
When I think about Challengers I just feel very very happy!