Live your life to the full, get out there!

6. Do not hide away but try to give your child as rich a life experience as you can. It can be difficult at first to take your child out, given all the special equipment that you might need to take but it is well worth persevering. As once you have had a few days out, you will develop a bag of essentials that you can leave packed up. If your child has mobility problems , then the Blue Badge for free disabled parking is invaluable as it not only saves you parking fees but also enables you to park close by to facilities.
We have always taken Joshua out : he went swimming from after his first baby innoculations and we went to Holland for a holiday when he was just 2 months old, with his pram loaded up with baby milk and nappies! If you make the effort, and it is an effort I accept, you will be rewarded with family days out.
However, you do have to be prepared for the reactions of the general public to your child, which can be cruel and uncaring : you do get used to the staring over the years, but it can feel intimidating at first. On one outing when Joshua was able to walk better than he does now, he kicked a little dog as we were walking into a craft fair. The dog owner shouted at Joshua calling him a rude name, at which point my husband became protective, even though Joshua had been in the wrong, and told the dog owner about Joshua’s disability, at which point of course he apologised and backed down.
I have certainly got thicker skinned over the years of being Joshua’s mum. Now I take real pleasure when he is on good form as he is a sociable boy, as he is greeting everyone in a café. He tries to catch people’s eye with his magic smile and sometimes has to resort to poking them to get their attention. Joshua adores music and he often attracts a crowd around a busker as he dances to their playing. Joshua’s joy of music shines out of him and is infectious, earning the busker larger donations I am sure.
Joshua is well travelled, flying to Florida several times in his life, Canada once and also to Holland, Italy and Germany. When travelling by air, you need to be organised but the airlines and ground staff are a great help, especially if they know to expect you. It is always worth listing your child’s disability when making any bookings as you will be surprised how often there sre perks to be gained: free entrance to events for the carer and fast track check-in and security at airports for instance. you have nothing to lose in asking if there are any concessions!

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