What Not to Say About Rosie – March 2015

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YOU will be your child’s greatest handicap.” Those words were spoken to me by Pandora Summerfield 12 months ago, after I’d written an essay about the shock journey my wife and I took following the birth of our daughter Rosie, who has Down’s Syndrome. Summerfield is chief executive of Down’s Syndrome Scotland, and her prophecy is bearing out to be true.

Yesterday was World Down’s Syndrome Day, and Rosie is now two years old. And for me and my wife Victoria, it becomes clearer with each day that passes exactly what Summerfield meant, as we find ourselves becoming increasingly over-protective towards our daughter.
Another handicap she faces is societal prejudice, the scale of which was highlighted last summer, following remarks made by Oxford University professor Richard Dawkins. Dawkins was responding to a Twitter user’s observation that if she became pregnant with a baby with Down’s Syndrome, she’d face an ethical dilemma. “Abort it and try again. It would be immoral to bring it into the world if you have the choice,” tweeted the professor. It seems that Rosie has three handicaps for the price of one.

As I wrote in this newspaper last year, coming to terms with the news of our daughter’s condition was extremely tough for Victoria and me. We felt depressed, disappointed, mournful even. Since we already had a two-year-old daughter, Abigail, this was also our first experience of managing the logistics of two children instead of one, and we sometimes wondered if Down’s Syndrome might not be the sole cause of our feelings. Caring for more than one young child is, in itself, mentally and physically exhausting – as was confirmed for us last December, when our third baby, Gregor, was born.

One of my clearest memories of those dark early days with Rosie was giving her a late-night feed: just her and me in a dimly lit room. She looked perfect and vulnerable. It was such a normal bonding moment, and it was probably the first time since Rosie’s birth that Down’s Syndrome had left my mind. I remember feeling changed and talking out loud to her; saying that I was sorry for how I had felt, and promising her there and then that I wouldn’t allow myself to feel that way again. It was a beautiful moment that will stay with me forever.
Unfortunately, I awoke the following morning to discover that I wasn’t in a Hollywood movie and you can’t just will your feelings to turn on and off like that. In the world’s greatest -ever anti-climax, I felt largely the same again. It was naive to think that anything other than time would get us there and that there wouldn’t continue to be setbacks.

I firmly believe that if we never left our house, there would never be an issue. But the outside world provides periodic reminders that Rosie is “different”. Every time we have to attend a hospital consultation, investigate nurseries or witness our daughter’s peers hitting milestones, it sets us back a little bit.

The societal challenges Rosie will face as she grows up were apparent from the instant she was born. Some people reacted with horror, saying things like: “Did you not have the test?” Just think what such a remark says to a new parent about that person’s thoughts on their baby. Take Down’s Syndrome off the table for a second. Imagine your beloved three-week-old child was a tad ugly but you loved him anyway and someone implies that if only you could have known well enough in advance you would obviously have terminated there and then.

At the other end of the reaction spectrum are people who are utterly nonchalant, and unaffected by the news of your child’s condition. These are the ones you like to hear. They say things like: “Ahh. Anyway, what’s her name?” My closest friend’s response stood out when he informed me that I’d still be the fourth best footballer in our house.
My own pet hates are comments which imply that Down’s Syndrome was intended for us. “You’re not given things you can’t handle”; “God has gifted you with one of his special little angels because you are such great parents.” Of course, we recognise that every response is well intended and remind ourselves to accept them as such.

I’d love to advise people to be comfortable to freely pass comment, so long as it is well intentioned; that you should be unafraid to say something rather than nothing. It would, however, be disingenuous of me to give that advice, as I’ve seen a great deal of vitriol poured on people by “offended”, parents on social media when someone in public says the “wrong thing”. However well intentioned, a stranger catching you off-guard in a shopping centre, remarking that “You have my sympathy” is not likely to be met with the best of responses.

It is understandably a touchy subject and you can probably guess that, the younger the child, the touchier it is, simply because new parents haven’t had time yet to develop the thick skin required to deal with these situations in order to avoid saying the “wrong thing” back.
People worry greatly about what to say and what not to say to parents whose child is born with a disability, and that is not a good thing because it often leads them to stay away altogether. But the answer is actually quite simple. Say exactly what you would normally say. “She’s beautiful.” “She has your eyes.” “She’s like her sister.” All fine.

As for parents, we need to guard against being too defensive. As predicted we will indeed become Rosie’s greatest handicap if, by wrapping her in cotton wool, we hold her back from reaching her full potential.

That notion of a child’s “potential” bears some scrutiny. Living with a child who has some limited potential at a genetic level forces a mindset change in your relative expectations. Since Rosie arrived, I have found myself asking some profound questions. What, for example, is a “worthwhile” or “successful” life?

I have been freed from linking the notion of success purely with the traditional big buckets of academic attainment, careers and money – and that has made me think about what my aspirations should be for all of our children. No matter what way I think about it, all roads lead to happiness and contentment being what ultimately matter, and I know that Rosie will have those in abundance. First and foremost I’ll want all our three children to be happy in whatever path they choose to take. Of course, you can feel free to remind me I said that come exam time.

I wrote in my previous piece about the exponential progress that’s been made in recent years, in terms of the education, opportunities, social integration and independent lives of people with this condition.
Society’s attitude, however, is failing to keep up. As the intellectual capability of people with Down’s Syndrome is unlocked through education, and as those individuals put it to good use as contributing members of society, it is society itself that starts to resist – and effectively people who would benefit from a helping hand, are actually being hampered rather than supported by society.

Pandora Summerfield made a second observation that has remained with me. She likened society’s attitude to this condition to prejudice of any kind. Specifically, the xenophobia that was prolific in the UK in the years before we became accustomed to immigration. “People are fearful of that which they don’t understand,” she said. In these last two years, I have come to realise how true that really is.

The responsibility of breaking down barriers must be shared. It is just as much our duty as parents of children with learning needs to educate others as it is others’ responsibility to learn. More, in fact. Whether we like it or not, people who aren’t in our shoes needn’t learn a damn thing. They can sail through life without needing to become more aware or inclusive. If Rosie hadn’t come along, I’d probably have done the same.

Familiarity appears to be the crucial factor in determining reactions to people with Down’s Syndrome. We’ve noticed that young people are consistently more accepting, which shows that the commonplace integration of special needs learning into mainstream schooling is having a marked effect on the students. Diversity of all kinds is critical for healthy social development. It’s curing the second handicap.

I notice this knock-on effect, as I continue to be taken aback by the effect of Rosie on others. It would be glib to say that her arrival has changed us, but if only I had a pound for every time someone had said, “Rosie is teaching us all”. And given that she’s only two, I think that’s pretty impressive.

Many in society believe that Down’s Syndrome should be eradicated through screening and termination. Typically they justify this using a moral argument about the need to increase happiness and reduce suffering.

But that mindset implies that the arrival of an individual with Down’s Syndrome will inevitably lead to unhappiness or suffering – either for them, those around them or the society which will bear the supposed burden of hosting them.

We have witnessed first-hand the benefits of having Rosie on those around her. I have seen the positive effects on society from integration of those with Down’s Syndrome. Is Rosie suffering? Thankfully, no. Down’s Syndrome isn’t painful. The aforementioned mindset is based on a stereotype predicated on factors which are improving on a daily basis.

A typical adult with Down’s Syndrome in decades gone by is no indication of the adults we are seeing nowadays. And those are no indication of what today’s newborn children with Down’s Syndrome are likely to be like as adults. The rate-of-change on the efficacy of special needs education is a factor that should not be ignored.

If this moral justification about increasing happiness and reducing suffering were applied elsewhere, then I cannot help but think that it would have left us without the films and charity work of Angelina Jolie, had the gene that indicated an 87% chance of developing breast cancer been spotted during her mother’s pre-natal scanning.

It is true that Down’s Syndrome produces higher levels of susceptibility to some medical conditions. However, predisposition is not predetermination, and those medical concerns are becoming less of an issue. Life expectancy among people with Down’s Syndrome has risen from 25 in the 1980s to 60 in the present day, and the trend is gravitating towards aligning with the rest of society.

So if a successful life is a contented life, and if you can earn the right to life without having to prove an immortal immunity to major illnesses, then it certainly appears to me that Rosie is already living successfully.

As Rosie’s character continues to develop I can’t help but feel that she’s come pre-packed with the resilience she will need to deal with the challenges she will face during her life. She is becoming one of the cheekiest, most mischievous and stubborn children I think I’ve ever seen.

Rosie was born with a learning disability and there’s nothing we can do about that. It’s ingrained in her DNA. We just have to accept it. What we don’t have to accept are the handicaps that are being imposed upon her by Victoria and I as parents, and by society as a whole. I believe we all have a collective responsibility to change that.

But having witnessed Rosie’s effect on those around her over the last two years I know that when that happens it’s not the world’s Rosies who will feel enriched. Rosie, and others like her, will have enriched the world.

1 thought on “What Not to Say About Rosie – March 2015

  • Have you ever seen the American TV show, “Life Goes On”? I can’t remember the young actor’s name, but it was a show about a family with a teen boy or boy in his 20’s with Down Syndrome. (Would the show perhaps be available on DVD)? This same actor was also in an episode of “Touched By An Angel” with Roma Downey. (I know, you’re Scottish and she’s Irish, but hopefully that’s not an issue)! This man in the story has a medical crisis, and the Downs boy tells him to raise his feet and legs above the level of his heart, and puts a pillow under his head as he lies on the floor. The boy then tells the man he’s an angel. The man, in shock, says, “God sent me a retarded angel???!” The boy replies, “No; God sent you me,” and continues right on caring for the man. My mom’s sister did not have Down’s, but she was mentally retarded. She lived to be almost 93. I think the church loved and cared for her a lot more than our family did. She had to go to a special school, as Special Ed had not yet been mixed in with regular K-12 schools yet. She loved kids and dogs. She was forced to labor in a battery factory in the heat and humidity until her baby was born in August of that year. They told her the baby had died. The daughter later found her. It’s no easy life for people with academic difficulties. But hey – Joseph P. Kennedy’s daughter, Rosemary, was the reason that another daughter, Eunice Kennedy Shriver, invented the Special Olympics in her own backyard in 1968. Joe Kennedy rejected Rosemary, against the wishes of his wife and the other kids. Speaking of unhelpful remarks, I found one on Pinterest that helped me through, as I have a disability. It said, “People say God never gives you more than you can handle. God must think I’m a badass!” Some days I think, “Just how much more of this can I take?” Evidently God thinks at least another day’s worth, every day! I typed for a medical office at one time in a small town, so everyone knew everyone else. One beastly hot day, I was walking out of the post office and wondered, “Who is that girl that is singing, in this 105-degree heat and humidity? Who could possibly be so happy??!” I realized then that it was Jenny, the Down Syndrome daughter of the mayor and his wife, just singing happily away while I was just so grouchy! One doctor in our practice just loved going out to see people at the county home, adults with disabilities with nobody else to care for them, because he said they were always so much happier and polite to him than most of his normal patients, who whined and complained about temporary illnesses they had that would not affect them for life. I’ve met practitioners who get sick of caring for what they call “The Worried Well.” The Rosies of the world have an inner joy and drive that nobody can take from them. So, you go, guys!! This young lady has cheerleader parents in her corner. My own father picked me up out of the crib and smacked my head from side to side because I cried for hours with colic. He also let me suffer from a 105-degree Farenheit temperature all night long when I caught scarlet fever. My mom could not drive, and he refused to get out of bed to take me to the Emergency Room. Mom could only bathe me down in cool water all night long for hours. The beating has affected the small and fragile blood vessels in a baby’s brain. Once a child’s temp hits 102F and above, they should’ve been taken to ER immediately. That is something you as parents will NEVER do, so she will never suffer in that way; so God Bless her and bless you too.

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