It's carers week again and the the media is full of stories about how caring makes you sick and poor. And for many, this is true, I know. But caring is a choice, even when the alternatives look grim. And when caring gets difficult, I don't want your pity.
I want this:
Dear friends and family,
I want nothing more than the support, understanding and acceptance that you all give to me now. In spades. You are all amazing. Not everyone stays involved when special needs enters a family.
Dear children's hospital,
Carry on caring. You're the best.
Dear Irish Health Service,
I dread the day that I have to bring adult children to accident and emergency. Please look at the local children's hospitals and copy. Note that they do not tolerate drunkenness or abuse in casualty. They look after patients and their carers. They even give us food if we are hungry and a drink if we are thirsty! Why should an adult hospital be any different?
I really appreciate everything that you do for my children, but remember that I have more than one child. Until recently I had three children in three schools in different directions, with different holidays. I can't attend everything that is held in school hours, nor can I attend evening events unless I can get a babysitter. I need notice too, and a note or text would really help: children are not reliable messengers, especially when they have special needs.
Dear Service Providers,
The clue is in the description. You are meant to be providing a service. Not building shiny new headquarters. We'd rather have new wheelchairs for our children. And this service is for children and their families who all have different needs. We need a service that looks at our children as individuals. Imposing one policy or one solution does not work for everyone. We need flexibility, not rigid rules. And while you're at it, please stop piling on the bureaucracy in the name of health and safety and fairness. All we seem to get is worsening services and slower delivery.
Also remember that meetings alone do not help my child. Action does. If you are having a meeting about my child, I'd love an invitation. As a parent I should be involved in the decision-making process. And copy me on emails. Especially if they're important.
And finally please listen to parents. Especially if we're begging for help for our children: we're only doing it because they NEED it.
Carers save you millions of euros every year by looking after their loved ones at home. Stop making it so difficult. Benefits are essential for many families who cannot hold down employment due to the amount of time and effort needed to look after their loved ones, carry out therapy, fill in forms and attend appointments. Every family should have a support worker who actually KNOWS about all the benefits and services that are available and then TELLS the family. Applications should be simple and streamlined and surely one application should be sufficient for everything. And finally for all the @DCAWarriors, please remember that there is no 'cure' for autism, so stop taking their benefits away!
I don't want your pity. Not for me, and not for my children. Our life may be different to your life, but it is not a lesser life. I just need you to understand when I'm too tired to talk to you on the phone, when I have to cancel plans at the last minute, when I can't come to your meeting or event because it runs over school finishing time, or meal time or toileting time or bed time.
I want you to design buildings with lots of ramps, with HUGE disabled toilets. Believe me, we need them. Even better if they could have hoists as well.
I want more events that cater to children with special needs, especially sensory needs. Every family should be able to be part of the community.
Remember that I don't always know what I'm doing. I have tried to become an expert on my child's problems, but I don't have a degree in special needs, and sometimes I get things wrong.
I'm just trying to do the best that I can.