It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome

I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.
It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.
It’s not like that anymore. Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.

We know that so we don’t do it anymore.

In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.

We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.

When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…

….so why are we still doing it with Down syndrome?

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When parents are told prenatally their child has or may have Down syndrome, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.

When parents get their results they are told all about the physical, developmental and health conditions that MAY come with the extra chromosome. They are given the worst case scenario even though it probably won’t be their reality…just in case it is. It is important that doctors tell parents about the increased chance of medical conditions and the likelihood of intellectual disability. It would be negligent not to. Parents need to know what may over the horizon for their child medically and be best placed to intervene or treat it.

The problem is, health professionals are not giving the other side too. I have heard people in the medical world describe how it is considered to be ‘painting too rosy a picture’ or ‘romanticising’ Down syndrome if they tell parents about the potential positives or about the support services available before they have decided whether to continue with the pregnancy.

As though it is ‘for the best’ if people don’t get their hopes up about what their child may be capable of before they make a decision.

Potential difficulty and heartache?….think long and hard about it even if it might not happen.

Potential happiness?…..best not to think about it in case it doesn’t happen.

If it is prudent to give parents the worst case scenario about health and development, it should be equally prudent to give the information about what help and support they can access. It’s not biased to give positivity and hope as well.

Why do parents have to wait until after they have decided to keep their baby before they are allowed to discover that the vast majority of families love and cherish their kids and wouldn’t change them for the world. To learn that early intervention principles, health advances and inclusion means that the kids born today will have longer and healthier lives than those born 50 years ago? To learn that different doesn’t necessarily mean bad and people with Down syndrome can and do live happy, meaningful lives.

The positive and negative information should go hand in hand…not handed out separately after parents have chosen their path.

Yes, by all means, tell parents that if their child has Down syndrome, it may take longer to reach developmental milestones and speech may be difficult….but also tell them that there is early intervention available and with regular physio and speech therapy, their child will develop and learn. Tell them about the state based Down syndrome organisations that are there to support them. Tell them about funding packages, respite, support groups, therapies and help lines.

Yes, tell parents that Down syndrome brings a higher chance of congenital heart problems….but also tell them that many issues resolve themselves or the surgery has an extremely high success rate with kids going on to flourish afterwards.

Tell them that some children have many complex health issues….but also tell them that many have no health problems at all. Tell them that everyone with Down syndrome is different and unique and not everything on the long list of ‘maybes’ will apply to them.

Yes, tell parents that their child will have some degree of intellectual disability and may face challenges….but also tell them about how much we are learning about how the brain can learn and make new connections. Tell them that there is a new family of incredibly supportive parents out there who can help them see how amazing our kids are and show them what is possible. Tell them that Down syndrome won’t define who their child is.

Yes, tell them that their child has Down syndrome….but don’t use the stereotypes from the 1960s as examples. Parents need current up-to-date information to understand what Down syndrome is today. Tell them about the army of pioneering parents who fought to keep their children at home and out of institutions.
Tell them about the parents who demanded their children be taught in mainstream schools or receive therapies that would improve their development.
Tell them that in the 1980s, the life expectancy for people with Down syndrome was 25. Today it is over 60.
Tell them how much has changed since the 60s and is continuing to change.

But tell them before they have made a decision….not after.

Don’t withhold this equally important aspect in a sealed envelope only to be handed over once a parent has decided to proceed. It’s not up to health professionals or the media or anyone else to decide what information is ‘for the best’. Parents should be respected enough to have all the facts in order to make decisions for themselves.

It’s not the 60s anymore.

It’s not ok to tell parents that their child will never walk, talk or learn anything. Mainly because we know it is not true for the vast majority of people with Down syndrome but also because it’s not ok to set parents on this path with dangerously low expectations of what their kids are capable of. No one can guarantee any child’s future but they have a much better shot at a bright one if people invest in and nurture their talents instead of expecting absolutely nothing from them from the day they are born.

A lovely couple came over to chat with Wade and I recently and tell me about their son who is 26 and has Down syndrome too. The man said the most beautiful thing to me…

“People always talk about how bad the world has become. They’re wrong. The world is a much better place for the kids now, much better than when my son was a child.”

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22 thoughts on “It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome

  1. There is still such a long way to go. My son was given a post birth diagnosis when he was two months old. Those healthcare professionals who celebrated with me when he was born were now commiserating and feeding me ‘information’ about my son’s future which was mainly negative. He has proved them wrong time and time again. But the main thing I think parents need to know, is that Down’s Syndrome or not when you have a child you never know what that child is going to be. Everyone is different and there is an element of surprise for all parents which is the wonderful thing about it.

  2. Very good point you make in the article, I agree a 100%! it´s time to make that change as a society and embrace all the positive sides, qualities and wonderful traits people with down syndrome have and also all the wonderful advances in medicine and therapy this days.

  3. I’m pretty new to your blog, but really wanted to leave you a message. Three weeks ago my nephew was born with Down syndrome. He has a pretty major heart defect which will need open heart surgery in the next few months. My sister in laws pregnancy was greatly overshadowed by this diagnosis as I think there was a lot of unnecessary worry about what could go wrong rather than what WILL go right. Thank you for sharing your thoughts which really mirror what I have been thinking these past few months. I know your blog has been a great source of information and support for my wider family. Keep up the good work 🙂

    • Thank you so much! I am so glad I have been some comfort and support to your family. It fills me up to hear messages like this. It’s such a shame we have struggle through our pregnancies this way! Congratulations on being an Aunty (again?)
      Are you in Victoria?

  4. When my first granddaughter was born the nurse told my daughter her baby had Downs, the doctor kept contradicting the diagnosis until they did the test. It was devastating for us at the time, but now I realize the devastation was because of the ignorance, the unknown and because all you hear is negative things about having a child with Downs…The doctor told her ALL the things her child was NEVER going to do, even being able to sit down (She switched doctors). She has proven ALL OF THEM so wrong! Had open heart surgery when she weighed only 14 lbs. and left the hospital two days later. She is four years old, she sat, walked at the same expected time as any other child, goes to school, takes good care of her little sister, hugs everyone around her, and she is the light of my eyes. People fall in love with her the minute they see her beautiful and loving personality. I am so thankful I was given this chance in life, I wouldn’t change anything on her…For me, she’s my PERFECT grandchild!

  5. Love this… and so very true. We had a birth diagnosis & thankfully our nurse had a nephew with DS… it was her voice I chose to hear over the grim picture painted by the other “professionals” and that made all the difference. Thank you for writing this!

  6. Recently on EWTN with Dr Ray many people called in about children with Down’s and touched my heart with how much those children have contributed to the families and what a blessing they are. They were encouraging a couple to keep their child and continue their pregnancy. I wish everyone thinking of their choice could have heard Dr Ray. I will never forget this show.

    • Thanks Sue. While I think it’s important not to direct a parent either way on their pregnancy it is so important that they know what raising a child with Down syndrome is really like! Sounds like that show had a huge impact! Wonderful.

  7. I agree that health care providers should present a more balanced picture of life for children with DS. But I’m sad by the comparison with teenage parents. This author is clearly ignorant of the stigma, biased research studies and social realities for teen moms and their kids today. Both groups fight parallel struggles- and we’d be better suited as allies. Teen parents are less likely to have their children taken from them than in the 60’s… just like DS parents are less likely to be forced to send their children to homes- but that doesn’t mean parenting in either situation is suddenly easy! Both groups of parents still struggle with biased public perception, lack of up-to-date and unbiased information from health providers, and difficulty locating appropriate support.

    More info on teen parents:
    http://www.girl-mom.com/
    http://www.amazon.com/Dubious-Conceptions-Politics-Teenage-Pregnancy/dp/0674217039
    http://feministing.com/2013/03/13/hate-those-terrible-nyc-teen-pregnancy-ads-no-stigma-no-shame-campaign-is-your-chance-to-do-something-about-it/

    • Thanks for your comment. By using this analogy I don’t intend in to suggest that parenting is suddenly easy for teenage mums. I’m sure it still has its challenges but today a lot has changed since the days of forced removal of babies. It’s not perfect and I’m sure there’s still a long way to go but the point of the analogy is to show that no one gives such outdated advice to pregnant mums anymore because it is so obviously wrong and outdated. Yet it is still common place for doctors to advise parents of the stereotypes from the 60s when they are given a dx of DS for their child.
      We are both allies because we both know that when we receive the support, respect and understanding we deserve as parents, us and our kids have better outcomes.
      Sorry if you misinterpreted my message.

  8. I think part of the problem is health care practitioners face very real consequences of being sued if they give families “false hope”, so they swing to the very negative. Which is ridiculous. Additionally, they may be pressured by insurance companies to encourage people to end pregnancies because of additional costs associated with kids with somewhat higher needs. Also terrible.

    • Yes, I agree these are real dilemmas facing medical professionals. If only they were just as frightened of being sued for spreading false worry too!
      I just hope that the idea of good/bad news is removed from the equation and health professionals just give ‘news’ or ‘information’ and let parents decide if it’s good or bad….

  9. Pingback: Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome | Embracing Wade

  10. Pingback: National Down Syndrome Congress – Ya no estamos en los años 60…

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