“It is our considered opinion that Hannah is autistic.”
Spoken out loud for the first time, these words reverberated around my head as though a gong had been struck – its resonations both physically and emotionally shattering. It wasn’t that this diagnosis was unexpected. While I had tried to avoid researching the “signs and symptoms” so as not to make a self-diagnosis, I knew in my heart of hearts that this was the most likely outcome of my daughter’s assessment. What I was not prepared for was the darkness that engulfed me as the words were said.
Up until that point there had always been hope. Hope that it was nothing really. Hope that she was just a little slower in her development and that she would catch up given a bit of time. Hope that I was a paranoid Mother who just needed to be more patient! But not now. Hope was extinguished as “autistic” was said and the reality of Hannah’s life-long learning disability had to be faced.
Of course, lots of other words were spoken in the next half an hour or so. Words stressing Hannah’s strengths and abilities. Words offering support and outlining the services available to us as a family. Words to reassure us that everything possible would be done to ensure that Hannah was given the best opportunity to reach her full potential. But while I heard those words being said in the room they were inaudible to me because the gong was resounding so loudly through my mind.
We were handed some information books about autism, given dates for follow-up appointments and gently escorted from the building. Once outside, the coolness of that late September morning shocked me back into reality and the tears that I had been fighting since hearing the “A” word began to flow. I couldn’t scream or shout as I wanted to. New words filled my head. Why her? Why us? It’s not fair! What now? As we made our way silently back to the car my cries of pain and anguish were heard only by One.
I hadn’t expected to react like this. I thought I was prepared for this outcome. I was sure that my faith was ready to face this because I had already been on a journey of acceptance that this was the likely diagnosis. Yet in that moment, likely and actually proved poles apart and faith floundered as acceptance drowned in despair.
As we journeyed towards home waves of tears continued to silently flow as the next unanswerable question resounded through my mind. How do we tell people? What do we tell them? How can we help them understand when we don’t understand ourselves? What does this mean for today? What does it mean for tomorrow? However will we cope?
“Mummy” – a little voice in the back of the car spoke above the reverberating gong of my mind. I turned to look at Hannah and she smiled – a smile so beautiful that in an instant the darkness shattered and the light of her face stilled the turmoil of my mind. Here was the reason for my heartbreak. A little girl, happy, healthy, beautiful – for whom nothing had changed that morning! Her need of me was no greater now than it had been a few hours ago. I was the same “Mummy” and she was the same “Hannah” – so what was I crying for?
Hadn’t my journey of acceptance already seen me grieve enough over the child I thought I had? God had shown me how I needed to let go of what never was and to take up what actually is – I’d done it hadn’t I? Hadn’t I embraced that she was Heaven’s special child and that God had seen something special in me that deemed me worthy to look after this treasure for Him? Yes I had been on that long, painful, emotionally exhausting journey and yet now that word had been said it was as though I was right back at the beginning.
The only analogy I could find that sort of explained how I felt was that it must be something like when people know that a loved one has a terminal illness but even though they are expecting death it does not take away the grief they feel at the time they actually die – does that make sense? Now having travelled that journey too – after my Dad was diagnosed, and later died of, pancreatic cancer – I can say with assurance that the similarity is very true. Yes I knew on that day there was a very real possibility that this group of specialists would diagnose my daughter as having autism but that didn’t stop the pain as the gong was struck.
Arriving home, I knew that family and friends would want to hear how we had got on and before long I was thrown into telephone conversations where the gong just kept reverberating. I think that having a child with a disability is one of those life experiences that you can only fully understand if you have been there and so while people received the news sympathetically, it was beyond most of their understanding to grasp exactly how this felt. I think it helped when I used my analogy about a loved one dying – especially for those for whom this was already a personal experience.
With each conversation the gong seemed to resound louder until I got to a point when I was emotionally and physically rung out! There were still people I wanted to speak to but just could not and once the immediate family had been informed I called it a day. I sent a brief text message to close friends saying that we were okay but that the drain of the day had taken its toll and that we would be in touch later.
I had previously come across a wonderful piece of writing by Emily Perl Kingsley in which she tries to help people understand how it feels to raise a child with a disability. While I had wept buckets on first reading this article, it had become a source of inspiration and as I lay in bed waiting for sleep to enfold this life-changing day, the gong was at last stilled and I began to wonder what Holland had in store for me…………
“Welcome to Holland”
Emily Perl Kingsley
“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 are 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 has 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. 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 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, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they are 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.”
The pain of that will never, ever go away because the loss of that dream is a 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 gong still reverberates when recalling memories of the day of diagnosis and tears easily flow when recounting the experience. However, almost 10 years on, I can happily say that Holland may be a different destination to that intended but it is a place of many blessings.