Tuesday, 2 September 2014

Chillin in the long grass

I just want to go sit in the middle of a field.

I must think it monthly.  That’s a lie, fortnightly.  Alright, alright –  at certain times it’s weekly.   When the phone won’t stop ringing.  The appointments won’t stop coming.  The to do list keeps getting longer.  The battles for support get more complex.  I just want to pick up my boy and spend a little time together where it is quiet.  Hide out in the long grass.  Where there is no mobile signal, no ‘just be good and watch CBeebies whilst I sort this out..’, no hideous equipment with leg bruising sticky out bits, no letters starting ‘to the parents of…’.  Where we can just enjoy being together. 

..That is unless it’s during one of Little J’s ‘testing’ phases.  Then I’m well up for some field time by myself thanks (preferably with a glass of pinot grigio and a sizable straw).

But when I’m not longing for time spent sat in mud avoiding mosquitoes and the menacing gaze of livestock (oh, how my aspirations have changed…) I’m often found seeking advice from other families.  Families who understand the road we walk (ok, trip repeatedly on whilst trying to simultaneously style it out and brace for the next face plant).  Families whose advice helps us dodge those particularly nasty potholes. People who we interact with all the time, yet rarely get to spend actual time with.

And that’s why a weekend last month was particularly special.  Because we got to take a break as a family, in a supportive environment, surrounded by people who know that road all too well….and there was even a field.  We were at Camp Amazing, a camping event for children with additional needs and their families.

Now you may be thinking, so what?  You went camping with a disabled child – big whoop.  There are loads of accessible camp sites out there, places you can go.  And to a certain extent, you would be right.  But that’s not what makes Camp Amazing so special.

Camp Amazing is unique in that it is an annual event purely for disabled children and their families.  It is a place where we are free to break the conventional rules and do whatever is needed for our boy.  We got to carry Little J onto a bouncy castle and let him enjoy a space that is usually the domain of the mobile.   We got to spin him round and round a disco whilst he laughed his head off.  We got to plonk him in the middle of the dance floor whilst he stared at the flashing lights.  And he loved it.

For us too, it was an actual break.  A place where we could achieve the usually unattainable.  A place where we could be honest.  You see, in general out and about, I face a regular dilemma.  Do I explain Little J, or not?  Usually that answer is no.  Not because I am remotely concerned about delivering that explanation, but because it scares the bejesus out of people. The most common question is around what is perceived to be fatigue.  I usually get it from strangers when walking down the road, from the old lady in the news agents, at the post office counter.  ‘Ah look, he’s tired.  Look how tired he is.  Is he tired?’  I usually give little nod.  To my utter shame I have even been drawn into prolonged conversations that are devoid of truth.  Conversations based upon a fantasy of a troublesome three year old who was just ‘awake in the night.’  I have nodded along as they have told me how their child was always up at that age, asking for a glass or water or trying to sneak into their parent’s room.  I have tried to end the conversation promptly, as I watch the seconds tick by at alarming speed on the clock on the post office wall.  Because I can’t say the truth.  How can I say it?  How can I answer ‘actually, he’s right in the middle of a neurological attack which may or may not be a seizure. He can’t move at all and these happen all day.  Right now I’ve got one eye on his airways and one eye on the clock which is ticking closer to me needing to turn your post office upside down with boot stomping paramedics.  Can I get a book of second class and some envelopes?’

Yeah, better not to eh.

But at Camp Amazing we could be honest and no one flinched.  In fact, we had very little need to be honest.  I don’t know if it was the change in environment. I don’t know if it was being outside.  I don’t know if it was because daddy was subtly feeding him mouthfuls of Mr Whippy all day and his sugar levels were higher than Selena Gomez singing ‘Let it Go’ whilst downing a pint of Nesquik.  But he had hardly any of his neurological attacks and re-gained the babble he has been struggling to find since his last regression. It would seem all we need to do to get this boy to move forward is drop all his therapy and go live in a tent. 

For siblings too, Camp Amazing offers a special break.  Little J is an only child, but hearing siblings ask after the friends they made the year before, seeing them interact with their disabled brother or sister in an place where disability is normality….It all made for a fantastic environment.  I am sure there were some immensely proud parents that weekend and so they should be.

And for adults, an event like this is so very important.  I admit I was struggling a little prior to that weekend.  Not because of Little J.  He is doing remarkably well at the moment.  But because of the endless sea of bureaucracy we have to wade through just to secure basic support for our son.  Because there is only so much you can fight before your knees start to buckle and the waves start lapping over your head.  Talking to others who fight those same battles helps. Just being around people who get it, having a laugh over a glass of wine (no straws involved, promise), talking it through and getting advice.  It helped.  It really helped.

So you see I was half right before.  Sometimes you really do need to go sit in the middle of a field.

There’s just no need to do it alone.

Camp Amazing is a voluntary funded charity.  To find out more about them, see their Facebook page here.

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