Picture this: You are placed in a pitch black room that you have never been in before and your only instruction is that you must find the light switch by yourself.
You are strangely baffled that you have been told that there is a switch and yet they didn’t tell you the location, but also sort of weirdly grateful that the person bothered to tell you there was a switch in the first place.
You know that you can find the switch if you fumble about for long enough… sure you’ll end up with a few bruises and get into all sorts of crazy mishaps, you’ll be confused, angry, determined and anxious – but you’ll get there.
You’ll find the switch and PING on comes the light... you stop to familiarise yourself with these new surroundings… it’s half what you expected but also half not – kind of like a dream when you switch between reality and outright whimsical.
Soon the light starts to fade and you are once again left in the dark; knowing all too well that you must look for another switch.
My next analogy is that you are making a patchwork blanket and you are collecting the little squares to piece together one big comforting blanket.
Your main obstacle is that the different squares are being kept in unexpected places and you never know where your next one is coming from.
You collect each one and stitch it in… you get used to that square and look forward to adding the piece; whilst remaining cautiously aware that you will soon need to be on the hunt for that next square.
I seek out these little nuggets of information and stash them away for safe keeping – there is so much to learn from so many different people and you never want to miss out.
I wish when you embarked on this journey that someone issued you with a handbook of “it’s useful to knows” such as
If you have a disabled child you will receive higher working tax credits.
* If you have a child with a disability you may qualify for some relief for your council tax.
* You may qualify for DLA/grants/respite/carers allowance.
There really is a myriad of information that needs to be collated and shared, it amazes me how most of this information comes from other parents, forums, people I bump into at the supermarket and strangers in the coffee shop.
It amazes me to think that as you scuffle around that dark room, getting cables stuck around your feet, things falling from cupboards onto your face and so on that there are other people in the rooms next to you doing the exact same thing.
Their experiences may be slightly different, they have acquired bruises in different places to you, they have been there perhaps a little longer, they have been in more of these rooms than you, but they have all had their go at this strange little game.
By being a strong advocate for my daughter and educating as many people as I can about cerebral palsy I have actually learned far more than I have taught.
The lady at the supermarket may be an expert in seizure medications, the man in the coffee shop may have a niece who works at a respite centre, the man in the local shop may know of a fantastic integrated nursery.
Sometimes it’s okay to leave that dark room and ignore looking for the switch, sometimes people will help you find it without the need to fumble.
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