I am often asked to describe the experience of raising a child with a disability - to try to help
people who have not shared that unique experience to understand it, to imagine how it would
feel. It's like this…
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.
Many parents who have a child with additional needs or a disability will know this piece of writing and be able to relate to it in some way.
When we first started on our autism journey, the day that autism was first mentioned to us as a possible explanation for Isaacs difficulties a friend shared this with me. I remember thinking what lovely piece of writing it was and how I could cope with being in Holland rather than Italy. The reality however was very different for us. From the first time that Autism was mentioned as a possibitity to the actual diagnosis was 18 months, and even after that it was still unclear where this road would lead us. The lack of support and available services to help both Isaac and us was incredibly frustrating.
There were times when I would read through this piece and in particular the last few sentences telling me that Holland was a beautiful place, Holland has windmills, Holland has tulips (one of my favourite flowers) and Holland has Rembrants. Holland, it appears is a beautiful place, Holland has many incredible things that other places do not. This didn't really fit with what we were experiencing though. Watching your child having a major meltdown, and by meltdown I do not mean a mere toddler tantrum. By meltdown what I mean is extreme screaming and refusing to move, either that or running off at a speed you never thought possible from such a young child with no awareness of his owns safety, I mean hitting, biting, spitting swearing, the whole works, all with an audience of onlookers who would have their own opinions about how we should deal with this obstinate behaviour. I would often be told that he needed a good slap or that I clearly had no control over him (to be fair at that point I really didn't) I would hear the comments about what a spoilt brat he was and my heart would break. There were occasions when I would try to explain to people that he has autism and he wasn't actually misbehaving, he wasn't coping with the noise, the crowds etc but couldn't communicate that. Other times, I would just try my hardest to ignore them. The reality was, I felt like I was in a foreign country, maybe Holland but instead of enjoying the beautiful sights and the amazing culture here I was stuck in the back alleys without a guidebook to help me, I was lost and frightened and there was no one available who either could help or who wanted to.
As time went on we fought and argued with different service providers and eventually found our own support groups and networks. We managed to navigate our way out of the back alleys, we moved away from the scary back streets and started to find our way into the more beautiful parts of Holland. We saw the Tulips in all their amazing beauty and splendour and were amazed by the windmills and how the mechanics made them work. We could finally see what an amazing place Holland was. We are still in a foreign country to all intents and purpose and just as we think we are finding our way around we find yet another new area to explore, sometimes is is beautiful and others not so much. We have discovered that although there is not always an experienced guide to help us find our way, we can still do it, we can navigate our way around, sometimes we take a bit of a wrong turn and end up back in unknown territory but we know that if we keep walking we will find our way.
Life is a journey and it doesn't always take the path we want or would choose, never in a million years did I think that we would have a child with complex needs but we have. Would I have chosen it? No definitely not, but am I glad we are here? Absolutely yes!! It is hard some days but oh my goodness the rewards are amazing and I can honestly say that Isaac has blessed us more than we can put into words, he is the most amazing, crazy funny little man we know. There are days when I wonder what it would be like to be back in Italy but Holland is our home and I love living here.
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