I know most parents, perhaps especially special needs parents, are breathing a sigh of relief this week as their little cherubs are heading back to school after the long summer break. Certainly Facebook is full of photos showing beaming little faces sporting new uniforms.
Secretly however (or perhaps not so secretly now I’m blogging about it) I’m a bit sad that my daughter is going back, as we’ve had wonderful adventures these past few weeks and we have both grown and developed from spending so much time together. Over the holidays we went to some special needs events with other special needs families which were great.
At a ‘Rainforest Party’ Lucy stroked a snake, or more accurately she tried to strangle it and it had to be rescued which was an experience for both of them. We also joined a ‘mainstream’ group – a risk perhaps but pre summer hols I had become determined that she should be able to access the same kind of things her non disabled peers do. So I enrolled her on a week of swimming lessons.
The teachers were amazing and very adaptable, being that Lucy did not understand their instructions. However, she loves water and smiley happy people so the two combined well. The other kids were only concerned about what they were doing and their parents didn’t notice us either as most of them were glued to their phones and tablets, missing all their children’s fun.
We also took Lucy on holiday to North Yorkshire.
We paddled in the sea and built sandcastles, ate sticky ice-creams, played putting (with a little help from Daddy) and rode a donkey.
The Donkey owner did something that caught me off guard. After the ride he pressed the two pound coin I’d given him back into my palm and said, “No charge for you” he looked shy as he did this and I admit I had mixed feelings.
However as our holiday went on I began to notice the acknowledging smiles strangers gave us realising that we were getting on with it just like everyone else, even if our access, feeding and toileting needs were very different to theirs.
This didn’t happen all the time however.
We celebrated Lucy’s first ever meal from a restaurant menu (fish pie at the world famous Magpie Cafe in Whitby) but this milestone had entailed scaling many steep steps outside, packing away her buggy, ignoring an old man’s tuts and glares as Lucy made some happy noises and carrying her through a crowded restaurant of unhelpful people to get to a lift and the only disabled access toilet –on the first floor!
This, like other times, was a strain. The difference we bring with us in terms of need and perhaps behaviour can be a bit square peg in a round hole, but it was worth the effort and with a bit of planning, mostly achievable. It was probably the last year we could rent a cottage on two floors but God willing it won’t be the last ever holiday we have.
When you have a child with complex medical needs you never know what the future holds, so all memories are worth the effort to get them.
One thing is for sure, we are as a family determined to make the most of all opportunities to make happy memories and not just wait for the annual holiday to bring them.
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