When Ruth Birnbaum approached me, I offered to write and share some of our family’s experiences on her website to offer an insight into the lives of those living with disability and how people can help become more inclusive.
My perspective is as a father of a gorgeous 7-year-old ‘Z’, who charms everyone she meets with her wit and love of life. Z was born three months premature with her twin brother; both tiny 1kg miracles. Within hours, it became apparent that she had contracted meningitis and the initial days and weeks were touch & go. We were told that due to the infection, she had Cerebral Palsy but that it would not be until she was older we would know the severity. The following few years saw a series of operations and assessments with all the anxiety that brings and now we are facing the challenge of trying to ensure that she has the support services in place to maximise her potential.
Having a daughter who is currently wheelchair bound with various additional needs leads to many challenges. I want to share three areas that impact on our family’s day-to-day life – Appointments, Access and Isolation.
Being a parent of a child with disabilities can often feel overwhelming both emotionally and practically. On the emotional side, you cannot help but worry about their future – How will they develop? Will they be able to live independently? Who will look after them? – On a practical level there are so many appointments. At our last count, we have 11 discrete teams involved with Z, which each require appointments and follow ups. That means that almost every week Z misses some school and either my wife or I have to take her to an appointment. I’m fortunate that my employer has been very understanding but I know other dads who due to work pressure cannot share the burden. We are truly grateful for this care but it becomes a treadmill taking time and energy.
Planning day trips takes care due to access issues: it’s not as straightforward as just picking somewhere you want to go. We have to ask ourselves various questions, from the obvious – is the site wheelchair-friendly? What equipment we will need to take? – to the less obvious regarding toilet facilities. A disabled toilet may provide some extra space but if the person cannot use a regular toilet, they need different changing facilitates. Z has made great progress so this is not such an issue for us, but for many parents with disabled children that have outgrown a baby changer the only option left is to change them on the floor – public toilet floors are not a place you want to lay someone down. To find out about places that have changing spaces you can visit the campaigning website www.changing-places.org.
The final area I want to highlight is isolation. As a family, having a child with disabilities can be isolating; you can feel disconnected from your community. A simple example of this is that we are fortunate that Z is in mainstream schooling (with a wonderful LSA) and that the school very kindly allows us to park on site (a dream to many a parent). However, the downside is that pick-up is away from other parents so all the playground chatter and connections are missed. There are some places that we know we just cannot easily access so we are unable to attend.
Life presents challenges for all of us. I would like to offer some advice. To any families living with disabilities, do seek out the many support networks your community offers. It provides a special opportunity where we can share experiences and help each other. As a family we have over the past seven years had support from several charities. For friends of families with disabilities, please be proactive and if you are able to help, make the offer explicit; e.g. saying: "On Monday I know you have appointments most of the day let me make your family dinner" is much better than saying "Let me know if I can help." And, of course, be aware that not all disabilities are immediately visible. Be persistent in keeping in contact with your friends. Life can be so intense that families with a child with a disability have little time for themselves and making time to catch up with friends can be difficult. So if you are reading this and have friends with children with a disability please make the time to connect with them.