Tomorrow we are off for a week in a tent, given the weather so far this year I'll be taking plenty of jumpers, raincoats and umbrellas too! Every year several families meet up via Special Kids in the UK, a charity that supports families of children with special needs. I have two, one with Di George Syndrome and another with ADHD and autism.
The annual week in our field is bliss, our little bit of paradise no matter what the weather does. Many members have profoundly disabled children, others, like mine, are active but often still hard work. The rest of the year we are surrounded by people who think their normal is the correct one and those of us who have kids who look different or behave different are somehow to be pitied, pointed at or condemned at parents who can't control their kids.
That week in our field for many of us is the only break from that judging from people who have no idea what its like to live day to day with a disabled child. In any one day there could be one or two autistic kids having a meltdown, screaming, shouting, hitting or swearing and no one worries, they're left to calm down and join in with everyone else once the dust settles. Others may be laid in bed, ventilated while they sleep. Others being watched carefully by parents and carers while they are having a seizure or recovering from one. Often that means another adult will pop in and chat, bring a cuppa or just help entertain siblings,
A child who is in a wheelchair and unable to move isn't just left to sit and watch, Many of the able kids spend much of their holiday pushing those children around the field, making sure they are as much a part of the community as anyone else. I know that within a few minutes of arriving my kids will get out of helping with the unpacking and putting up the tent by finding a child to zoom around with and go and say hello to everyone else in the field.
For that one week we have a special family, our annual commune, where we all have a different normal and where that's just normal for us.
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