Welcome to Holland – NOT!
(Extract from Emily Perl Kingsley:) 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 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…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 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.
This is a sweet post, written back in the 1980s by Emily Perl Kingsley, with the benefit of hindsight from having raised a son with Down’s Syndrome in the 1970s.
Emily’s passion and commitment was also reflected in a film that she wrote, which followed a fictional couple and the struggle they had coming to terms with their child’s Down Syndrome. Emily undoubtedly did much to break down barriers – for example – it was her job as a writer on Sesame Street that enabled her to include children with Down’s Syndrome in the show.
Journalists wishing to use her analogy in explaining the effect of disability on parents often cite her ‘Welcome to Holland’ essay. It was recently tweeted – which inspired me to write this reposte.
I first heard it when I watched Emily’s film ‘Kids Like These’. The actress off ‘Cagney and Lacey’ – (the mommy one, not the blonde bombshell with relationship issues) played the part of the mum.
At the time, I thought it was heartfelt, but I couldn’t and didn’t want to relate to her sentiments. It seemed to me to be about different time, when learning disabilities were seen as a Major Big Deal. Children with severe and even mild intellectual disabilities were routinely incarcerated and excluded from society apparently to save their parents from the challenge of raising them and relieving society of the burden of ever clapping eyes on them.
I viewed the essay as coming from the culture and time it was written – in middle class, white, over-achieving America; where the parents remembered being advised by their paediatrician to give up their son after a very poor prognosis was presented to them.
The mother portrayed in the film became evangelical and campaigning – and rather pushy as I remember.
Her son was put under a lot of pressure to achieve and prove society wrong. He became a Down’s Syndrome Ambassador.
I can imagine – and have great sympathy for the family and the enormous battle that ensued, to gain services and support when they chose to raise their son and help him be the very best he could.
What irritates me (yes now we are coming down to it…) is the fact that, 25 years later, this same advice is still being given to new parents with disabled children and is on the front page as an introduction to the American National Association for Down’s Syndrome. It just makes me feel that we haven’t moved on.
It’s time we all Got Over It.
Back in the 60s and 70s perhaps being a pushy parent was all about dreaming that our children were going to be the embodiment of a cultural gap-year in Venice; all art exhibitions, handsome men and nights at the opera. Back in the real world, babies scream and poop and throw up, challenge you in every possible way and deprive you of sleep, money and time.
Eventually as they grow, kids may drop out, do drugs, get pregnant (or not) and grow up hostile and rude. And that’s just the high achievers. Modern kids sometimes don’t even bother to grow up, they just carry on sponging off ma and pa, commenting on how disappointed they are with their parents while ‘failing to launch’ their own lives. I know of no parents not having ‘issues’ with their darlings, regardless of their intellect.
The idea that having a disabled baby presented to you means all those expectations are left unfulfilled, like thinking you are going on holiday to Rome and rocking up in rotten Rotterdam – well that’s just the way it is for parents of real kids. Full Stop.
Kids are a pain. I know this, because I used to be one. They do their own thing, in their own way and probably on occasions deliberately to annoy their parents. We may dream of Italy, but as I heard once, ‘head for the stars and you may just hit the trees’. That’s life.
Having a child with a learning or intellectual disability is so not Holland compared to Italy. I know, because I have experienced four incredible and unexpected outcomes on the rocky road of motherhood that I’ve been staggering along for the last 25 years.
I’ve had sweet, compliant and delightful; rude, stroppy and willful – and mixtures of all of that too.
There have been boys and girls. They’ve been happy and helpful, (in the afternoon) and sullen and sulky (by bedtime). They’ve been born silently, poetically dead and born rudely, cutely alive; normal and bouncy and even been born abnormal and bouncy, so I feel I’m qualified to comment. I’ve been handed not a ticket to Italy and ended up in Holland, but the Round the World option. I’m still travelling, still loving it and still rocking. It’s called being a mum.
So, if you are the new parent of a disabled child, particularly with Down’s Syndrome, and you are looking for inspiration, you do not need to look further than into your child’s eyes to know the answers. You need not ever feel disappointed. Becoming a parent isn’t a holiday. It’s the moment you learn to leave your own needs and wants for quite a while ‘on hold’ and concentrate on this little person who needs you to prioritize them.
Watching my son achieving at his own level is humbling to me and the rest of the family. He cheers us all on too and makes our world warmer, sunnier and brighter.
I know how hard it is for my son to achieve things that ‘other people’ would value but I have learned to accept that. I have never for one moment considered that my son’s life is of any different value to anyone else’s, even if other people do.
What maddens me is that his challenging behaviour and limited abilities bar him from so much that he could and would like to do, not because he sees himself as a problem, but because other people do; when systems and processes and ‘rules’ exclude him.
For too many years, children born disabled have been doubly effected by the lack or limited opportunities that would perhaps have created new pathways in their brains and raised their cognitive levels, memories and experiences because brains grow by being stimulated and challenged, not protected and left dormant. Too many spend way too much time being ‘cared for’ rather than being actively engaged in the joyous process of living.
I am already too busy challenging my son to be the best version of himself possible along with keeping my family loved, stimulated, safe, fed and cared for to take on the world but I would like to ask of everyone to be kinder, offer us sensitivity and give him a chance. Listen to him! Invite him! I challenge everyone I come across to let my son be involved and included if they show willing. That’s a big job and I’m already quite overcommitted!
This is my belief: every parent wants their children to be the best version of themselves and be happy. To live, be safe, away from harm but right in the middle of fun and a future. That’s how they learn, grow and develop skills. And become part of society.
We owe it to our children as they grow up to help them become independent of us and able to take on the world with confidence. We start as the hub of their wheel, but we need to gently become just one of the spokes.
We need to stop looking for our own fulfillment during that time and be grateful for the wonderful experiences of having a child because many try and fail to become a parent in the first place and suffer way, way more pain than an unexpected transfer from Fiumicino to Schiphol.
And here’s the secret: my son, of all my children, is the only one I can ever feel 100 per cent confident that I’ve truly made happy and fulfilled. He delights in pretty much everything I can throw at him. He teaches me every single day. I feel honoured that he chose to exist in my life, despite all the odds.
I’m trying to create some independence for him as he enters his teenage years so that he can start dealing with the world without me at his elbow all the time and I need society – everyone – to help with that.
When we step out of the door and have to deal with the inflexibility and fear of the Real World (on occasions, by no means all the time) I sometimes feel, frankly, on another planet, not an interesting flat European country with excellent public transport, beautiful canals, bilingual locals and lots of bicycle lanes. If only.
The debate needs to move on. No more Holland analogies please. And a bit more action to get society kinder, safer, slower to condemn and quicker to catch on. I need society to be less hung up on ‘achievement’ and more interested in senses, how people process sensory information and stimulus and why my son may react in an unexpected way. I need society to understand that not everyone can talk fluently and that not everyone is going to conform to behavioural ‘norms’ and get over it and move on please.
Then we can all pack our suitcases and go on holiday. My family hasn’t had one for many years and I feel we really need one. Holland or Italy. Or perhaps both.