On difficult days a few simple words really can make a huge difference.
Cornwall Accessible Activities Program (CAAP) is a relatively small charity which organises activities for disabled children during school holidays. It has just one part time employee who does an enormous amount of work to enable as many children as possible to take part in fun activities.
They receive no council funding and rely on grants, kindness and a few keen volunteers to enable them to keep the cost to families at a reasonable level.
Between March 2008 and March 2011 Cornwall had been part of a pilot scheme to provide access to activities for disabled children. The idea of Aiming Higher for Disabled Children was a fantastic one as it enabled many disabled children to take part in physical activities which are often difficult for families to arrange due to care or equipment needs. But when the scheme stopped, disabled children were once again left unable to take part in things.
One of the people who had been involved was deeply affected when the project ended. Because now she knew just how many disabled children were going to be missing out on activities during school holidays.
So she took the knowledge gained from that project and set up Cornwall Accessible Activities Program (CAAP) in her own time with a small group of others. And they made it magnificent!
This group does so much for so many. If a child needs extra support, they provide it. If specialist equipment is needed, they hire it. This enables many children to take part in activity without their mum having to assist, and, lets face it, there comes a time when our children no longer think we are cool enough to hang around with!
The team at CAAP have made huge efforts to make activities as accessible as possible and they have enabled my son to enjoy some fun activities in the past, including a zip wire! But as children get bigger it can get harder to manage physical care needs.
And it gets harder to take part in fun activities and, for some, it becomes impossible.
After the people at CAAP read our story of being unable to attend a Christmas party for disabled children (run by a different organisation) they got in touch to say that they wanted to get involved in raising awareness of the facilities needed and that they are determined to make this year better for Adam and for all the children who need a Changing Places toilet.
They told me that they know that even more needs to be done to ensure that every single disabled child, whatever their needs, can join in and have fun just like all other typically developing children.
Hearing a charity say that they are committed to helping is a massive boost!
Not just to me, but to families across the country who will have a little bit of hope that organisations in their area might fully embrace their children too. So many parents from across the country have told me that they feel like their children are invisible. Too many responded to my post about the Christmas party telling me that they have had similar experiences. And far too many told me that they no longer even ask if their children can attend activities for disabled children in their area.
CAAP wants to help make businesses aware but they also want to make sure all disabled children can be included, as soon as possible. After all, something as basic as needing the toilet shouldn’t stop a child from having fun.
I put them in touch with a company which hires mobile Changing Places toilet facilities and which is prepared to bring one to Cornwall. The lovely people at CAAP are now trying hard to obtain the funding necessary to hire one so that as many of their activities as possible can be enjoyed by as many disabled children as possible!
It isn’t cheap to hire these facilities, even just for a day or two at a time, and they will not be able to do it at all events but I am thankful to them for wanting to.
Not being able to stand doesn’t mean that you can’t have a great life and it certainly doesn’t mean that you can’t offer great things to the world.
But we do need people who are kind, caring and compassionate in order for that life to be as full as possible and I am thankful to have so many people who believe in my son’s right to live a full life, and who support me in my efforts to make sure that he does.
So thank you to Cornwall Accessible Activities Program for not just getting behind me, but for standing beside me.