This is a place I didn’t expect to be - but the view is extraordinary view is extraordinary
Published on: 28 Mar 2016
Saturday April 2 is National Autism Awareness Day and at Blackhorse Primary School (which has a Resource Base for autistic pupils) the children celebrated this before the Easter Holiday with ‘Onesie Wednesday’ – underlining the key autism awareness message that we’re all different and have different ways of seeing the world.
Here Jo-Marie Shanks, parent of Resource Base child Ethan, explains what it’s like parenting a child with Autism
Welcome to Holland!
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . about Holland.
Welcome to Holland sums up beautifully the initial challenges of being an Autism parent. With time and the ebb and flow of life, things do feel easier and we all settle into our own version of ‘normal’ whatever that is and the laughter returns and the blessings and beauty become ever more apparent amongst the difficulties. With a sense of humour the quirks are even very entertaining. Of course as parents we will all think and feel differently but I am almost certain that most autism parents would agree that the most challenging aspect of having a child with Autism is not the Autism.
The most challenging trials are external to the child such as a struggle to access appropriate support and services, or the disapproving glares and comments from members of the public who see a child unable to cope and think ‘naughty’ and ‘poor parenting’. Or a world not designed with their needs in mind, too loud, too confusing, too over stimulating. There are also the commonly held misconceptions resulting from prevalent autism myths about what is a very wide spectrum (No he isn’t like rain man, no they don’t all have savant skills, no his autism doesn’t mean he isn’t clever, no his autism is not the result of our choice to vaccinate).
Particularly painful is the reactions of others as my child attempts to be social and make friends, whose efforts are often to be met with confusion or a lack of willingness to try to understand, engage and include. We all have a duty to teach our children to be inclusive, that we all need friends; it’s just that some of us may need a little more support and understanding. We are all different and that is ok, truly ok.
Thankfully with the work of writers such as Steve Silberman and other high profile Autistic speakers such as Temple Grandin the view is growing that Autists are “different not less” and are just a natural variation of the human experience who have always been there, a ‘Neuro tribe’ of folk whose brains just happened to be wired differently, and thank goodness they are! What would the world be like without the likes of Allan Turing? Stephen Jobs? Bill Gates or Einstein? The list of Autists who have changed the world goes on…
Further information and support can be found at:
South Glos Parent Carers forum www.sglospc.org.uk
Bristol Autism Support www.bristolautismsupport.com