The up side of Down

Elizabeth, Marie and CatherineI am always bemused, as the adoptive mother of two girls with Down syndrome, when people assume that my husband and I did something particularly praiseworthy and saintly. No one seems to regard birth parents who keep children with disabilities, as Governor Sarah Palin did, so highly. Birth parents who choose to give up a child with Down syndrome can be subjected to criticism. However, if the baby is diagnosed with a disability before birth, the most desirable action for the benefit of all (including the child) appears to be abortion. Indeed, the quickest way to find “Down syndrome” in most pregnancy books is to look up “abortion”; what message does that send to pregnant women?

We were especially lucky to be able to adopt twice in a country where babies available for “stranger” adoption are increasingly rare. Our adopted daughters, whom I will call Elizabeth (19 years) and Marie (14 years), are gifts twice over, being gifted to us by God via their respective birth parents. We have two birth daughters, one born with spina bifida who died a week after birth and another, “Catherine” (18 years), who is only fourteen months younger than our oldest adopted daughter.

Even children who are both severely physically and intellectually
disabled have lessons to teach us if we are willing to learn. The
lessons may well reach us through the example of love shown by their
We didn't set out to adopt children with Down syndrome and when we did, we had no way of knowing how each baby would develop, because every child is different. Elizabeth, who was adopted at a month old, was a perfect baby to care for, very placid and loving. We adopted Marie at nine months old and she had an horrendously loud cry and was difficult to feed. If love were just a feeling I’d have returned her! However, love is also an act of the will, so we persevered and gave her the love that she obviously had missed out on in her first nine months. Recently I asked Elizabeth if she knew what “adopted” means, and discovered that to her it means “I am loved.”

Despite similarities in appearance and certain behaviours that many share, each child with Down syndrome is unique. Elizabeth and Marie look very different, Elizabeth having a more typical Down syndrome appearance and body shape: slanted eyes, straight brown hair, short arms and legs, comparatively large hips, and small hands and feet. Marie is also small for her age, but has a slim body with long arms and legs and blond hair. They also have very different personalities.

Elizabeth is very much a tom-boy, is very good at ball games but has a sensitive nature and is inclined to sulk if upset. She also is very sociable and generally well behaved. When she was twelve she identified with boys so strongly she underwent what (we realised later) she regarded as a sex change operation: having her hair cut very short – a big deal for someone who hated hair cuts. However, since puberty she has embraced being a woman, has crushes on a variety of “boyfriends”, both real and fictional (including Harry Potter) but is still a big rugby fan. As a consequence of our experience I am horrified when I hear “experts” talk about deliberately delaying puberty so children can have “gender reassignment” operations later.

Marie loves wearing pink, and actually has a good dress sense; she particularly likes singing, dancing, concerts, fireworks and food. She is a huge fan of  High School Musical, as is Elizabeth. When upset, she gets angry and slams doors. Even though Marie is very outgoing, her behaviour is often unsociable, rude and sometimes dangerous, partly because she likes acting out the less desirable scenes of the children’s videos she watches. Unfortunately, the children she enlists as fellow actors are unaware they have been assigned a role from a movie. Marie is a prime example of why censorship is valuable, as what we see and listen to does influence our actions. Marie also loves attention, even if it is negative, so trying to correct problem behaviour is an ongoing issue. She can, however, be very polite, loving and helpful and is delightful to watch when excited.

Both girls can be very stubborn (“persistent” is Marie’s middle name); both have wandered off at separate times and we have had to call the police to help find one or the other. Both are also very good at operating electronic equipment such as computers, video and DVD players. They also like watching DVDs with the subtitles on, which I think has helped both their reading and spoken language; their speech is reasonably clear, although we still misinterpret some of what they say. Elizabeth has a mobile phone and sends texts that we can usually decipher.

Both girls have kept reasonably good health despite being born with minor heart defects which resolved naturally. They visited the doctor frequently in their early years, largely because of chest and ear infections; Marie was hospitalised several times with croup. When she was eight years old Elizabeth was diagnosed with coeliac disease, a genetic autoimmune condition that damages the small intestine, so she is on a gluten-free diet. We discovered that Marie also benefited from a gluten free diet, especially in terms of increased concentration and improved behaviour.

Both girls attended local Catholic primary schools, and currently attend a Catholic high school with teacher aide help. Academically they are at a similar level (largely 6-8 years old) but with differing strengths, Marie being better at maths and spelling and Elizabeth better at reading and general knowledge. One of the most stressful things about having children with special needs is the ongoing battle to obtain and keep appropriate help and funding for their educational needs. While in some ways it may have been easier to have our girls in a special school, or special satellite classes within a mainstream school, we felt that they would benefit from the higher academic and behavioural expectations and the positive role models among other children particularly in regard to speech and behaviour found in an ordinary school. Admittedly now they are older their lessons are often adapted to their level and they spend more time in the “learning support centre,” but they do have opportunities to take part in such events as school sports days, camps, concerts and religious ceremonies as part of the wider school community. Elizabeth has been class captain several times and last year attended her first senior school ball. She also took dance as a subject and was in two public performances with the rest of her class.

At our local church, Elizabeth has been an altar server for several years and knows all the Mass prayers; Marie likes to hand out the church newsletter and help take up the collection. Both girls have been members of Girls’ Brigade since they were six years old, and also take part in Special Olympics activities. They both attended horse riding for the disabled (RDA) although only Marie still goes. Marie also attends music therapy which she enjoys. In order to make all this happen a lot of parental input is needed, so I have opted to be a stay-at-home Mum.

And in case anyone is under the impression that it is a big disadvantage to grow up with two intellectually disabled siblings, I can assure you that their sister, Catherine, is not only doing well academically, but was a school prefect and generally is a lovely, responsible young woman who had a very busy last year of school in 2008, including attending World Youth Day in Sydney. She will be going to university this year. I remember years ago reading about a couple who aborted a baby with Down syndrome because they didn’t want the older sibling growing up with a “vegetable”! I’ve found the siblings of children with disabilities are usually very caring, as are the children who take the time to befriend a child with a disability.

I have been involved as a volunteer for sixteen years with an organisation called Parent to Parent that provides support and information for parents of children with special needs, and it has been a privilege to get to know so many wonderful families. I think meeting other parents who have children with a wide variety of needs helps put one’s own children in perspective. To me my children are not “severely” disabled, though obviously in need of extra help, and I find it hard to comprehend why some people would think their lives are not worth living. Even children who are both severely physically and intellectually disabled have lessons to teach us if we are willing to learn. The lessons may well reach us through the example of love shown by their parents.

When I was growing up, most children my age with disabilities were institutionalised. I never knew anyone with Down syndrome until my late teens when, as an occupational therapy student, I volunteered in a community home for adults with intellectual disabilities. I think most people who choose to abort a child because of disability do so out of fear and ignorance, sadly fuelled by the ignorance and prejudice of the medical profession. I hope that the future doctors, teachers and legislators who currently attend school with my daughters will remember that children with Down syndrome, and other disabilities, are first and foremost human beings.

Monica Regnal is the pseudonym of a New Zealand mother. Her daughters' names have also been changed to protect their privacy.


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