What were you doing in 2010?
What was going on in your life?
I was asked these questions at the weekend whilst on a training course for work. They asked you to look back to 2010 and write down a brief description of where you were in your life and then compare it to where you are now.
Was I doing what I thought I’d be doing?
What plans had I made for my future?
Was I now where I thought I’d be?
Whilst the point of the weekend was to focus on your goals, particularly in your career and aspirations, I couldn’t separate them from what was happening with my family. Once I started thinking about 2010 it was tough to regain focus after that. For about 20 minutes my mind was lost in a fog of the early days of autism. I was busy trying to figure out what had happened, where had the last 6 years gone?
Jude was diagnosed with autism at the very end of 2009, at 18 months old. What was he like back then? What was I hoping for, what was I expecting? Had I done enough for him since then, and could I have done more to help him overcome his challenges?
For some reason my mind kept flashing me images of my wife and I attending the “Good Beginnings” course shortly after Jude’s diagnosis, a course that is offered in our local area for parents of children with autism.
There were around 12 other parents who attended, all at various stages of the diagnosis process. From what I remember those weeks I spent there were pretty tough. I didn’t really share much with the group. I was struggling to make sense of my feelings, and sharing with a group of strangers was not something I was interested in. (How times have changed!)
As I listened to the other stories it felt like everyone was comparing everything they heard to their own child. I know I was. Trying to understand their own child better, searching for a glimmer of hope or familiarity in the challenges their child was going through.
The people in that room were the first autism parents I had met. How I wish I had been more outgoing and made more contact with them. There was only one other dad in the room, but even with him, I never got much past a shared smile and an “alright.”
I remember him well though because he had twins, both of whom were on the spectrum. What struck me was how different their 2 boys were. Different interests, different challenges, they were so different.
I remember one of the twins was an escape artist. They would tell stories of how he could scale over the garden fence, climbing anything everything, apparently using his toes just as well as his fingers for extra grip. He was only 4, but they were struggling to keep him safe.
Another lady’s child had an obsession with Top Gear. He just wanted to watch it over and over again. She wasn’t sure whether it was the cars or Jeremy Clarkson, but Top Gear was what made him happy. Not the usual viewing habits of a typical 5-year-old.
As my wife told stories about Jude, and I added the odd titbit, we soon realised Jude had been diagnosed much earlier than any of the other children. Whilst the course leaders tried to reassure us that early intervention would really help him, I couldn’t help but think it also meant his autism was much more severe. For it to be diagnosed without debate at 18 months old meant it was very obvious for the professionals to see.
Over the 10-12 weeks we were there we covered various topics such as communication, sleep problems, toilet training, sensory issues, etc, but one thing that stands out clearly in my mind was when the course leader read out a poem called ‘Welcome to Holland’. I’d later find out that this poem is very popular within the special needs community, written nearly 30 years ago, by Emily Perl Kingsley, a mum expressing how she felt about raising her son with downs syndrome.
When I got home from the course I was on this weekend I looked the poem up again and re-read it. Here it is below
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books 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.
The poem ended positively, but back in 2010 I couldn’t see it.
The fact we wouldn’t be going to Italy felt soul destroying. I couldn’t see how our lives would ever make sense. We were at the beginning of an impossible journey, why were we the ones who had to go to Holland?
For years I had been dreaming about Italy. I understood Italy, I knew what I was letting myself in for. I knew I’d be really happy in Italy. Why me, why did I have to go to Holland.
The thought of Holland was scary. I didn’t know anyone who had ever been there. I didn’t know where to go when I got there. I didn’t know whether I’d ever understand the language.
My first few years living in Holland were harder than I could ever have imagined. I just couldn’t get my head around the language and the culture. As hard as I tried I just couldn’t find a way to communicate with Jude. He didn’t understand me, and I didn’t understand him either.
I felt disconnected from all of my friends who were busy having fun in Italy. I was jealous of the good times they were having, and jealous of the future lives they were about to embark on. I lost touch with a lot of people when I moved to Holland. I felt like I couldn’t leave Holland, anytime I did I felt guilty about being away, or frustrated that we couldn’t stay. For some reason a lot of my friends who lived in Italy never dared to venture into Holland to come and see me either. Holland was outside of their comfort zone, they didn’t seem to understand why we just couldn’t come to Italy to see them instead.
Then something magical happened. Slowly, over the next 2 or 3 years, Holland became less scary.
I got to know some of the people who live there. In fact, I brought someone else to live there with me too.
I made some really good friends, friends who understand what it’s like to live in Holland. Friends who understand the challenges, and celebrate the be
I began to understand the language. I’m not quite fluent yet, but I’m getting better every day.
I studied the culture, immersed myself in it, and now I love it here. The culture has become an integral part of who I am.Now I can happily say that I truly appreciate just how beautiful Holland really is.
It’s not perfect, and it can still be scary when I end up somewhere new in Holland that I’ve never been before. Some days living in Holland can drive me crazy, but I’m sure living in Italy would drive me crazy too.
Holland hasn’t changed in the last 6 years. It’s still the same place. The people and the culture are the same. What’s changed is me, my attitude towards living in Holland, my ability to discover acceptance and realise what unconditional love really means.
So to those of you out there who are discovering Holland for the first time, welcome. If you see me come and say hello, it’s not that scary here.
Holland might not be where you thought you were going in your life, but believe me, it can still be an amazing place to live.