Some reflections from Toby's mother, Jackie:
Jackie had never considered working in the caring profession and so she was totally unprepared for her 24/7 family caring role. Toby is now 17 and her whole perspective on life changed when he was a few months old and delays in his development were investigated and diagnosed. Jackie never thought 'poor me' but just got on with the tasks ahead with the whole family working together. At the time Kez was just 3 and Tim had to work away from home quite a bit.
Every day must be carefully planned, and extra time must be allocated for every task such as getting Toby dressed and parking the car. It is so difficult finding adequate parking as there needs to be space to set up a ramp to get Toby in and out of the rear of the car in his wheelchair. Jackie doesn't patronise any shops or restaurants where Toby isn't made welcome, "if Toby is not welcome, the Spencer’s do not go there"!
It is not possible to pop out of the house even for 20 minutes on a whim, or just pop next door to see a neighbour as Toby cannot be left alone. Toby needs suitable food at fixed times and so any trip out must cater for these absolute requirements.
More respite care is now available for Toby, but this is still only 3 consecutive overnight stays and 2 other nights per month. Toby is taken out after school by a teaching assistant until 7pm one evening per week. In the school holidays there is help from the charity Diverse Abilities who take Toby out for 4 hours per week to activities which he loves, such as a trip on the Swanage Railway, a visit to Farmer Palmers, or bowling. This gives Jackie the opportunities to go out shopping and have valuable time with Kez.
Jackie and husband Tim are happy when Toby is happy and healthy and never stop thinking about him, they even check in his room when he is away on respite thinking he is there.
They wouldn't change anything for their sake but would for Toby's sake, for example, for him to be able to play football. Jackie explains how priorities change - "you don't compare children and their achievements, and you don't look for milestones to be reached but there are amazing moments such as Toby taking off his own coat." "Happiness is the number one priority and Toby certainly communicates when he is not happy!"
Some reflections from Toby's sister, Keziah:
"People often ask me what life is like as a sibling carer. They say my life must be hard, but I don't see it that way because to me it's just life as normal. Toby comes first - there's no way round it. My social life is catered around him and his needs, and even my college life is complicated. I have to be careful who to trust when telling my friends about Toby, because people can be a bit funny about it. They give me sympathy, which is strange to me because as I said earlier - to me it's just life as normal - or they are being nosy. If Toby gets upset, I feel I must drop everything and help mum find out what is wrong."
"I know you must think, on reading this, my goodness, the poor girl - but when Toby's happy, he is an absolute joy to be around. I play with him, and he loves being tickled, and he likes my pet bird, Claude, as well. I am very close with my parents - we're a team, to help take care of Toby and his needs. I won't go so far as to say we never argue - we are human after all, but as most girls my age aren't close with their parents, I am the opposite to them in this case. We are a close family, and Toby is why."