I recently got accepted into the Social Entrepreneurs Social Impact Program and, as a result I was invited to join the finalists at a Residential Workshop in Louisburgh County Mayo.
I actually wrote: “Good Coffee, Wine and Chocolate” on my "Dietary Requirements" form for the weekend.
And it made me realise why I do what I do.
You see Social Entrepreneurs do not wake up and jump out of bed one day shouting:
“I’m going to be a Social Entrepreneur!” and then start looking for a Social Issue to Entrep about.
Nope, most of them just find themselves noticing or often personally facing a social issue and instead of complaining - they come up with an idea to solve it.
But it is not just an idea - it is usually a niggling itch that just won’t go away until they sit down and come up with a plan and start scratching it.
Well, that was my experience anyway. I’m a fussy person, I like to have what I like in the way I like it - so I particularly identified with my daughter Grace and frustration at not being able to get what she wanted, in the way that she wanted, when she wanted.
My own experience is that it is best to be clear about your preferences and not be out of sorts when you are only offered things you don't particularly like. And I realise that being autistic must feel like that all the time. With limited communication and understanding of social cues, it can be difficult to get people to understand your preferences, which must be very frustrating.
When I am presented with instant coffee for example, I feel very uncomfortable about drinking it. (I can barely type the words instant coff-ee without making a face, GAH!)
However, in most social situations it is considered very rude to refuse it - so I just leave it to go cold in the cup (and suffer caffeine withdrawal) or discreetly make my way to the kitchen and tip it down the sink while furtively making a cup of tea.
In other words, rejection, then helping myself to find what I really wanted would be the option.
Remind you of anyone?
In order to attend this residential workshop I was given the opportunity to choose what I really wanted in writing - making it clear. Yes I realise that the organisers were expecting us to notify them about Peanut Allergies or a decision not to eat anything that used to be gamboling around the hillsides before being arranged in a convenient rack on our plates.
But good coffee is important to me. I don’t function well without it.
I was delighted when I got to the wonderful house where we were doing the workshop, to find strong sensory cues that I would be getting an excellent brew of freshly ground coffee: An empty packet, a good smell and the tell-tale plunger pot. I relaxed and accepted and was able to concentrate on the task ahead.
It was a different story at the B&B. I don't know if you have ever been to an Irish Bed & Breakfast but they are run by families who live on the premises and offer exactly what they say; A bed, a shared bathroom and in the morning, breakfast.
You are totally dependent on the Irish Landlady; a kind of substitute Mammy who offers you tea and cupcakes on arrival, 15 different kinds of cereal in the morning, a full Irish breakfast with fried everything and when you get in at midnight, she will be there behind the door with more tea and some freshly baked scones.
There is no chance to make a visual request. No access to the kitchen to help yourself and if you are nervous about coffee quality; no way of making sure it will be okay. So I meekly accepted tea while refusing the 27 different versions of breakfast (I only eat chocolate and fruit before 11am) and went on my way.
I'm pretty sure the landlady didn't like me much. She probably thought I was rude for not accepting her hospitality and piling up the toast, bacon and eggs while letting her pour me more tea. I could easily have become isolated and withdrawn in that environment. But she would have seen a much more relaxed and sociable me over in the Big House at 10 am with my coffee, some chocolate and a keen mind ready to learn.
Again, does this remind you of anyone?
Given the opportunity to access my preferred choices I found it easier to relax and integrate with my surroundings. Denied of access and independence I preferred my own space.
Because I needed this:
I'm not being critical of the Landlady - she is an Irish Mammy after all and probably believes that if she wasn't there the world come to halt as everyone stared at the empty tea cups and unplugged kettles in dismay.
And I was amused to see members of our party were very comfortable with it - but I am sure they were still capable of looking after themselves if need be. (Being Social Entrepreneurs and all)
So that is why I came to create The Grace App. I know how it feels when you can’t get what you want, and I wanted to make sure my daughter Grace was always able to express her wants. Being able to share it with other kids and adults is a bonus. Being able to convince the world that all people with a communication disability deserve the right to express what they want as a priority would be even better.
If that makes me a Social Entrepreneur or as I like to say it
“A Snum-preneur” (Special Needs Mum Entrepreneur) - well I’m proud to be it.
Everybody deserves the right to say what they want. My Aim is for them to get it.
© Lisa Domican July 2011