Weekend Reading

Are you familiar with an ivy leaf-shaped punctuation mark called a hedera? How about the virgule? The pilcrow? Ever see the 16th century point d’ ironie? Henry Hitchings’ Wall Street Journal article takes an enjoyable look at punctuation’s fluid history and future. One interesting point is his assertion that today’s punctuation is marked by  “…an increasing tendency to punctuate for rhetorical rather than grammatical effect. Instead of presenting syntactical and logical relationships, punctuation reproduces the patterns of speech.”

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Read about the prenatal test for depression resistance here. Made me smile.

My teenage cousin Karl is outgoing and joyful and loving. He’s a voracious reader. He has a wicked sense of humor. Lane is a happy-go-lucky little boy I used to nanny. Lane plays the piano, downhill skis, loves puzzles, and is both ridiculously cute and stubborn as a mule. They both embrace life whole-heartedly. They both bring joy to all around them. They both have Down Syndrome. They both deserve to live,

Do you see a lot of people with Down Syndrome window-shopping at the mall, walking in your neighborhood, or browsing at the library? If you don’t, it’s not because they were never conceived. It’s because more than eight out of ten babies with Down Syndrome in the United States are killed before birth. Statistically, it was safer to be a Jew in Nazi territory during the Holocaust (roughly 64% died) than a child with Down Syndrome conceived in our country today. That quiet grocery store aisle or empty park bench should be a ghostly reminder of lives we stopped short. Lives that the article’s author points out are statistically happier than average for all concerned.

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On a less sobering note, here’s a little help for those of us who are fashion-challenged: How to tie a scarf six different ways 

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These Baked Eggs in Spicy Tomato Sauce look delicious. I’d try them today if we weren’t about out of eggs. And cheese. And tomatoes. And milk. And cream. And fruit. And…and…it might be time to hit the grocery store.

 

 

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8 thoughts on “Weekend Reading

    • I know, it’s the punctuation mark made just for me! Little did I know it had been waiting for me these 500 years…

  1. Wow, eggs and tomatoes were on our mind too. DH made a morrocan omelette for lunch which was basically a tomato stew with an omelette on top. It was really good.

    Regards your article on depression : I read the ‘enjoying the small things’ blog where Kelly writes about Nella. I think that her story has changed my view on downs syndrome in terms of what outcomes can be achieved for a child born with downs. My only personal experience prior to that was with a downs child my aunt has fostered for years (she would adopt but the way Australian law works she would lose any government support for him if she did) – his parents gave him up at birth. He has so many health complications and is constantly in and out of hospital for surgeries (mainly heart) and at 12 is still unable to communicate in any way. So, my understanding was that a positive outcome was unlikely – until I read Kelly’s blog.

    Honestly, though, on a personal note I am just grateful for 12 week scans, both for Ginger and our current little one, that have meant we don’t have to make a decision. I can’t imagine the heartbreak parents go through when their probability of downs come back high. I personally don’t think I could abort – but then I haven’t been forced to make that decision. I only feel sympathy for those that do.

  2. It’s important, as you point out, not to trivialize the extra work a Down Syndrome child requires and the challenges they may face. Mostly I appreciated Elizabeth taking a humorous, positive look at something that is often only portrayed in a negative way to expectant mothers receiving test results. She herself is currently fighting breast cancer, and several of her five children struggle with disabilities including being legally blind, having Down Syndrome, and having Cerebral Palsy. Women like her and your Aunt are amazing people.

    While therapies and understandings of interventions have come a long way in the last decade (my aunt and uncle were told my cousin might never walk…someone forgot to tell that to him!) the degree of severity of Down Syndrome varies. Lane, the little boy I used to nanny, also had heart surgery as a baby. I can only imagine the shock and heartache any parent faces when they hear their child is ill or will struggle with disabilities. At the same time, once conceived, I cannot imagine telling a child they don’t deserve a chance at life based purely on challenges they may face (which is why I appreciate Elizabeth linking to the scientific studies showing that 99% of Down Syndrome kids report as happy and liking themselves). My prayer is that parents who feel unable to raise a child with disabilities (because there is no doubt it IS a big challenge) would chose adoption rather than abortion. As sites like Reece’s Rainbow show, there are many many families (like your Aunt) waiting to adopt these unique kids, often halted only by fund-raising for adoption fees.

    Goodness, that turned into a whole extra blog post (and/or novel) in itself! Thanks for your comment.

    • Yes, some people have an amazing ability to overcome personal challenges don’t they.

      I think I should clarify that my Aunt’s objection to adoption is not the cost of the adoption itself but, if she did adopt, she would lose medical cover for the child (Australia has a public system called medicare but it does not cover all the costs; actually far from it – eg. my 20 week a private Ob in Darwin is $2200 – medicare will give me back $400 but my private health cover will not pay anything because in Australia private health cover is only for hospital and auxiliary – not medical specialists ) and assistance like respite care. It sad that in Australia (and probably worldwide) not enough support is given to parents who have children with disabilities. I think (hope) that many more would go ahead with pregnancies if they knew their would be assistance to care for the child long term.

      You are right though – we need to show what positive lives these children can lead. Otherwise you end up with comments like my Ob in Melbourne made regarding the neo-natal testing for Downs at 12 weeks, I forget the specifics, but it was along the lines of if you come back with a high downs risk you should abort because it is only one day, and otherwise you have to care for the child for the rest of its life. I was shocked not only at the callous statement – but the fact that it completely disregarded (a) the child’s rights (b) that a high probability is not a certainty and (c) the fact that the parents would have to live with their decision for the rest of their lives.

      Sorry, got on a hobby horse – thanks for your response to my previous comment though.

      • Sorry, should have mentioned the obs comments was not to me specifically but at a presentation at the local private hospital for newly pregnant couples. The midwife that was also attending jumped in once he had left to explain that she did not agree with what he had said.

  3. Wow, what a statement from the Ob! As a doctor who is supposed to present the whole picture, it’s unethical to present only the “positives” without negatives and side effects. So many parents deal with grief, guilt and depression afterward. I’m glad the midwife chimed in.

    You’re very right about families with special needs needing all the support they can get. It’s come a long way from when my parents were children and kids with Down Syndrome were often automatically institutionalized, but there’s a long way to go yet on care, support and social acceptance.

    Interesting what you said about losing medical coverage for the child if adopted. I wonder what would happen to adoption rates if kids with severe special needs were left their medical plan. It must be cheaper for the state then paying the medical costs AND paying to move a child from home to home and foster care stipends. Not sure what the policy here is since every state has a different one.

  4. Re – medical care and adoption: I totally agree! Also, what upsets my Aunt most is that despite having had this little boy since birth and ergo being the only parent figure he has known, because he is only fostered the State can step in at any time and take him away (without explanation).

    Before having this little boy she used to foster newborns until an adoptive family or next of kin that would care for them could be found. She would often get a phone call of a morning to say have so and so ready we have found a home for them. She would receive no explanation of where they were going or updates as to their progress; this despite the fact she had often had them in her care for months and, obviously, formed an attachment.

    In Australia adoption at all is uncommon (http://en.wikipedia.org/wiki/Adoption_in_Australia), I think this article cites total adoptions Australia wide (pop 20 million) as 441 (269 intercountry) for 2008-09. Outside extended family or race adoption is rare and, in actuality, discouraged (ie. the 2008-09 figure gives 104 ‘known-child adoptions’ compared to 68 local – out of family – adoptions). This is largely a legacy of the public backlash to the ‘aboriginal stolen generation’ (http://en.wikipedia.org/wiki/Stolen_Generations) and child migrant schemes (http://www.naa.gov.au/naaresources/Publications/research_guides/guides/childmig/chapter2.htm) of early to late 20th century. The sad thing is that many of the children in the foster system these days come from Aboriginal or Torres Strait islander communities and disadvantage is so entrenched in those communities that it is very hard to find families within them able to adopt – so the poor children end up floating through the foster system for their childhoods.

    But, you are right about support for severely disabled children. I read another blog (based in the UK) Little Cotton Rabbits (http://littlecottonrabbits.typepad.co.uk/my_weblog/autism/) where the woman knits the most amazing cotton animals and also cares for a severely autistic son. Her stories of trying to get some respite care for their son (who at 10 is still up most of the night and often spends several hours of it screaming) are horrifying. Imagine going to the authorities and saying you simply can’t cope anymore and you need some sleep and being told they will monitor your situation for several months and see if any respite care is appropriate!

    In my view, parents of special-needs children should not be left to get to the point where they can’t cope; we as a society have an obligation to assist. Support provided from the start would ensure much better outcomes for the parents, the children with special needs and the siblings (who are often the forgotten party in these debates).

    On a more positive note, I don’t know if it exists in the US (though I imagine if not there is something similar) but a group called Not Born Yet has had a big advertising campaign here in Toowoomba with billboards and tv adverts showing families with disabled children who are very much part of their family and mother’s who have still gone to university despite having a child before they planned to etc. What a positive message to provide the community with.

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