In an informative and clear article, one that I would commend to every reader of the Cardiff Times, the activist and mother of two kids with Down Syndrome, Renate Lindeman, writes “…while governments (rightly) ban gender selection, selective abortion continues to be encouraged for children with Down Syndrome. In the United States and abroad, screenings are a routine part of health-care programs, and the result is the near-elimination of these children“(1). I should declare an interest. The Boss and I are parents of a nine year old who has Down Syndrome (DS): The Girl.
Last month I wrote a frothy piece about how The Boss and I met and dated. Today I wish to raise with you all something more existential. When we got pregnant there were signs (‘markers’) that our baby might have DS. The majority of clinicians – including nursing, midwifery and medical, hospital and community-based staff – advised us to consider an abortion. They did more than tell us it was our legal right. We were told that kids with DS were cute but could not expect to get much out of, or give much to, life. Our child would be an economic and academic albatross around our necks and upon the state. We knew little about the condition and were not given many positive pieces of information. No clinician pointed us towards groups for families of those with DS. No take-away material was given to us to pointing us away from the negative future that was being held out for our child. Luckily, we live in the Internet age and soon were able to know more than an average GP about DS. We learned too about the educational and career prospects of kids and adults with DS. Since The Girl’s birth we’ve played our small part in helping create and publicise resources for expectant parents and done our bit to influence professionals and public alike. I also run a blog/Facebook page dedicated to our wonderful Girl and to all matters DS (https://www.facebook.com/BeatingDownsBarriers/?fref=ts). So while it is absolutely true to write that there has never been a better time to be alive with DS, that society has never before been as able to offer to and get back from those with DS positive worth and added value. Yet it is also true to say that, without any public debate at all, policy-makers, scientists, and clinicians are readying the way for an end to all DS.
The Copenhagen Post reported in 2011 that Denmark “could be a country without a single citizen with Down syndrome in the not too distant future”(2). The mechanisms facilitating this apocalyptic outcome are screening and Non-Invasive Prenatal Testing programmes, and fear of the unknown. These programmes are not going to go away. But the assumption that they should inevitably lead to an abortion must surely be questioned. We can do so much more to show the value, the contribution, the love of those with DS. We can integrate our society fully, offering positive role-models and prospects to prospective parents who are told that their much wanted child may have DS. Let’s not make out that something so life-affirming is instead a life-sentence. So for the rest of this article I am going to share just a few entries from the Facebook page which I linked to earlier. They represent a small part of the fun and wit and love that The Girl brings to those around her.
Chess and music, words and ideas are my thing. The Girl loves that I play chess but has not yet asked me to teach her. Instead, we play imaginary chess each and every time we go to a restaurant or cafe (this started when she was about five years old)… We shift our imaginary pieces across an imaginary board, taking it in turn to move. I’ll praise a particularly good or daring gambit of hers and she’ll laugh and say “thanks dad!” Well, recently she’s started cheating. Knowing she is out of line, she will still take two of my pieces with one move (a bit like draughts). Or she will take a piece of mine off the board on EVERY move then grin at me, challenging me with a “what are you going to do about THAT?!” look. Smiling, I asked her today did she know that she was cheating; and also WHY was she cheating. The Girl: “Yes I DO know [big grin]; because it’s fun daddy!” Little rotter!
We three met a bit of a heroine of The Boss and mine recently. Many thanks to SP and her family for the welcome and the conversation. May it be the first of many. [SP is an adult with DS who has achieved so much including addressing the United Nations.] On the way back from this visit I played a CD of Frank Sinatra’s Capitol label recordings. When he sang “I get a kick out of you” The Girl said “that’s a bad thing to do, he’s naughty”, so we explained that getting a kick out of something/someone is not the same as actually kicking someone, and she’s been riffing with the idea ever since. As well as enjoying SP’s company The Girl also entertained us by doing a little drawing and presenting it to the other five of us. She showed us a drawing consisting of a sledge, a star, her boots, a house, and two blank spaces. When asked what the blanks were she answered “they’re my invisible friends!”, which I thought was very witty!
`Take a Break 1: a beautiful compliment`
As I was walking to school this afternoon to collect The Girl, the school’s Lollipop Lady (US: Crossing Guard), W, waved me over. She’d been hoping to catch me for a while she said. Here is what she told me: “I’ve wanted to thank you for that article you published in the magazine [Take a Break, at the end of 2015]. The love just jumped off the page. You and your wife do such a good job. [Your daughter] is such a wonderful girl. I used to live next door to a little boy with Down Syndrome. His mother never let him out of the house because she didn’t want anyone to see him. I used to say to her ‘that’s no way to treat him’ but she would reply that it was in no one’s interests to see him. He’s 32 now… and he’s such a gentle man; he shakes everyone by the hand and says hello. Everything that Angharad does… it’s so wonderful. You don’t know the good you are doing, thank you, thank you!” I hope that you’ll forgive me posting something that seems to big-up The Boss and me (though I am really pleased and moved). But I think it applies to all us mums and dads of our special kids. We are so proud of our kids and will do everything to give them a role and a voice in our world – that benefits our kids. But, as W. implies, it is also good for the world that our kids are in it too. Here’s to our kids and us parents.
`Take a Break (take two!)`
This week’s TAB magazine had another letter from a reader commenting on the article that came out at the end of 2015. One of the mums in school cut it out and gave it to me in the yard. You’ll recall that our lollipop lady/crossing guard, W, stopped me in the street last week and said kind things too. “The story ‘Me and my girl’ brought a tear to my eye. [The Girl] is an amazing and beautiful person and her bond with her dad is touching. I work with a woman with Down’s syndrome and she’s a star. Stories like this mean so much to the community. It put a smile on my face.” Our thanks to KP, of PM, Haverfordwest, Pembs xx)
Getting The Girl to ballet tonight was a chore. Because I encouraged her to eat up her cottage pie more quickly (so that she would have time to change and get there on time) she gave me the silent treatment; allied to the prison stare (a hard glare). After the ‘n’th request she just got more recalcitrant. The Boss and I usually make a game or a race out of things when she behaves in this way and she soon joins in and all is well. This evening I felt cross at her behaviour and didn’t use this sensible psychology. Eventually, with just 15 minutes left to ablute, change, and drive over I shouted at her and told her she had a choice – bed or ballet. Cue mega sulk and huge stomp. She sat on the toilet and tried to will herself into crying but was unable to. I backtracked and said I was sorry for shouting if she was sorry for behaving like a little girl. She grunted a sort-of ‘sorry’ and things looked up and we got there with one minute to spare. As we were getting out of the car Angharad said “Dad, I’ve got to tell you something”. Fully expecting her to play up again, my heart sank. But, instead, she smiled and said “I’m sorry my behave was like a little girl. I love you Dad” and gave me a kiss and high-five.
If you are reading this and expecting a child we wish you well. If you are reading this and expecting a child with DS or other special needs, buckle up – you’re in for the ride of your lives!