I don't know you, but there are moments I'm sure we're been in the exact same place - my son has complex health / sensory / developmental needs too. I've been in those situations where you feel sick, down in the very pit of your stomach, but have to plaster a smile on your face and pretend everything is okay, make conversation as if your eyes aren't burning. I've taken my son to appointments and searched the doctors face for any tiny clue as to what they are going to say the moment they enter the room. I've typed those impossible medical terms into Google, desperately trying to find out more about what they mean to my child. I've watched him struggle over and over to do something his brother and sister achieved first time. I've seen that look of pity in a strangers eye when they've caught sight of my gorgeous boy, seeing only his difficulties, not the sweet wonderful individual I know him to be.
You and I are both women; mothers; parents; carers. You and I are both lucky. We are articulate enough to ring up about a hospital appointment that has been cancelled twice and get it sorted. We understand the importance of our boys education, and we can argue to get some of what we think they need. We are able to wait around when the wheelchair clinic is running over an hour late. We have someone to wrap their arms around us when it's all too much and we need to cry, to be told it's all going to be okay.
But there are others who don't have what we have. Think of the mother who gave birth to a child with multiple disabilities when she was just seventeen, whose mother kicked her out, whose partner denied responsibility, who is scared and alone and doesn't know where to start looking for help or support. Think of the single dad with four children, trying to keep his teenagers safe while providing care to his disabled ten year old daughter. Think of the family struggling with their child's difficult behaviour, repeatedly called into school to pick her up early because she's caused a disturbance. Think of the couple with a child with intensive needs, requiring oxygen at all times, on a ventilator overnight, tube fed, with seizures and liver problems. Multiple medications, numerous appointments, repeated extended hospital stays.
Things can be tough, and while most of us are trying our best, everyone has a finite amount of energy, and there are only twenty four hours in the day. I'm pleased that you feel your son is getting what he needs at school. It's great that you've been able to find out about services that have made a difference to your family. But just because someone else is struggling, that doesn't mean they don't wish things could be different. Maybe that social worker from the disabled children's team hasn't rung back yet. Maybe they've been told that their child is 'not disabled enough' to get respite. Maybe they were turned down for DLA and don't have the energy to start over again with those forms right now.
You have the money to go to a private doctor if your NHS appointment comes in the post and you realise to your horror that your child is going to have to wait eleven months because 'he's not a priority'. You can arrange childcare for your other children if your son needs you, secure in the knowledge that they are safe. When you're ill and you need a day on the sofa with the DVD remote, you can arrange for someone to take your son to school, to make sure that there will be something for everyone to eat when they get home. When your child breaks expensive therapy equipment, you can arrange for replacements.
I'm sure you're right in that some parent carers are lazy, but you know what? Some parents are trying their best, but are not fortunate enough to be in your position financially, or have access to the newspaper front pages when they don't get what they need for their child. Before you criticise the decisions and priorities of other parent carers, perhaps you could try spending time with some - some ordinary parent carers, with limited financial resources. Or with a social worker who has to argue with a resource allocation panel for a family to receive even a couple of hours of respite a week. Or at a parent carer support organisation, who take calls from parents on the brink of crisis, who are unaware of a service that could take the pressure off simply because everyone thought they were coping, and they were afraid to say out loud that they weren't.
Perhaps by using your public profile to draw the public attention to issues faced by parent carers you could make changes, you could contribute to making systems more effective. As I said, you and I are lucky in lots of ways - there's an incredible feeling of satisfaction to be gained by knowing that you've made a difference to someone else's life. The publicity and attention your position affords you gives you a unique opportunity to do so.
For most parent carers, including both of us, there is always another phone call to make, another research paper to read, another therapy to try. And there always will be. I love my son dearly, but what his future will be like, in this age of austerity and ever increasing levels of need - I don't know. But what I do know is that by using the tools at my disposal I will do everything I can to make this world - his world - as great as I can, with as many open doors as possible, for him and for other amazing individuals like him. Maybe you could too.
Take care - of yourself and your family, and next time you give that young man of yours a squeeze, the next time you breath in his scent and feel his warm skin against yours, think of how proud you have the power to make him of you.
This letter is included in a linky hosted by the gorgeous and incredible Hayley Goleniowska (damn her) - please do pop over there and take a peek.