Aspies For Freedom

Discovering a world of hope
The Toronto Star
Nov 08, 2007 04:30 AM
Renate Lindeman

I had a wonderful, uneventful, textbook pregnancy when I was pregnant with April, my oldest daughter.

Even though I was often tired, it was a pleasant and exciting period in my life during which I reflected on my past and prepared myself for the future. I was 35 years old and would be 36 years at the estimated time of delivery. This meant I was offered the full "older-woman-equals-high-risk" blood screen, ultrasound and amniocentesis that could predict if our baby would have a chromosomal anomaly.

But my husband and I had our minds made up long before I even became pregnant that we would keep and love this baby, no matter what test results would indicate. We declined both the blood screen and the amniocentesis but did want to have "a peek" at the baby and agreed to have the ultrasound at 13 weeks. Everything looked fine, and brimming with self-confidence we enjoyed the remaining period of my pregnancy. It was a shock to discover a few weeks after our little baby girl was born that she had Down syndrome.

We quickly recovered from the shock once we familiarized ourselves with the diagnosis. Turned out our old, patterned expectations of Down syndrome needed some serious updating. People with Down syndrome are included in communities, schools, have jobs and get married!

Just over a year after our first daughter was born, I became pregnant again. By now I was 37 years old and was offered the "older-woman-plus-one-child-with-Down-syndrome-equals-extra-high-risk" blood screen, ultrasound and amniocentesis. This time we decided to go through the screening process. My blood screen and ultrasound, combined with my age, indicated an elevated chance of carrying a fetus with a chromosomal anomaly. After an agonizing week of weighing the pros (knowledge) and cons (risk of miscarriage) of having an amniocentesis, I came to a decision. I just had to know for sure and agreed to have an amniocentesis.

Turned out our second child would also be a girl and, oh yes, she had Down syndrome, too.

Even though we felt supported by medical staff throughout the testing process, the remainder of my pregnancy was unpleasant and stressful. On top of the usual hormonal mood swings, I was now dealing with feelings of guilt. Society doesn't always embrace people with special needs. Was it fair to bring my baby into this society with the challenges associated with Down syndrome?

With a kicking baby growing inside of me, I was asked: "Did you consider abortion?" ... "Are you sure you know what you're doing?"

Prospective parents who dream of having a perfect child suddenly face agonizing psychological, social and ethical dilemmas for which there seems to be no "right choice." With only a physician's view of a prenatal diagnosed condition as guidance, is it surprising that more than 90 per cent of parents choose termination?

The only advice I can give parents is that there is light at the end of the tunnel. Whatever you decide, make sure you know the true facts about your baby's diagnosed condition so you can make a well-informed decision.

Know there is a world of hope, resources and support out there. We – families with special needs – might seem invisible to the general public, but we are many and we are a resilient, supportive and joyful bunch.

Renate Lindeman is president of the Nova Scotia Down Syndrome Society.

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The same people who "don't always embrace us", don't have the balls to shoot us, do they?  Just make our lives miserable instead?

Our special needs are rather laughable..... we are gifted people.... we are just a little clumsy in their social world.   But we have gifts and are not shy to share them.  Colleague wanted to know how to make an é like in San José, I gave her a 20-second introduction to Character Map in Windows XP.  

It is too bad I can't simply ask her a question she would be good at, like how to attract some female stranger's heart.  It is not a relevant question in the world of Federal contracting.

I don't even think in terms of Asperger much any more.  I think it is even simpler than that.  
I am gifted, I am not sure how much the social challenge matters.  I know I am different because I am gifted.  I know I am gifted.  I know I have a challenge.

Well, GuessWho, you words are the words of an adult autistic who knows he is gifted. But when one sees a baby and knows that it is autistic, one doesn't know if this baby has/will have a "compensation" for his social problems (which are inevitable in autism)... Imagine you would have to convince parents/future parents of an autistic child to keep the child - and the parents are afraid that their child has "no future" or that he will "suffer" under his social handicap. What your argumentation would be?

Everybody has a future and will suffer in life. We don't really know what the future will hold but parents generally want the best for their children. Instead of simply killing off foetuses that "might" be defective, the better thing to do is lobby for acceptance of people who are "different" in some way.

I agree wholeheartedly - well said pakrat - also - while we are lobbying for acceptance for people of "difference" (beliefs, value systems, neurodiversity, faith or whatever) - we need to treat those with difference with respect - don't just chant the words - we need to make it a practice within our everyday lives.
We need to practice what we preach, otherwise it is just words.
Words mean nothing unless we are prepared to put into practice what we preach.

What precisely are you saying here, GuessWho?

If someone had mild retardation, it would be discovered by the time they went to high school.

Why would you think otherwise?

Mental retardation is quite a wide subject. Even mentally there are different fields, and being "retarded" in some of them doesn't imply being good or even excellent in some others. I always wondered why peple dubbed mentally retarded recieve physical support only - after the motto, mentally they are retarded anyway. I think, one also has to try to "force" them to use as much of their brain as they are capable to - their may be some hidden talent under the mantle of many disabilities. Maybe someday scientists realize it, maybe reserching f.x. life of people with Down's who managed to complete university brings some hints about how to make their (people's with Down's) brains do their best.

So also with different kind of MR. I simply cannot believe threre are mentally incapable people - I think many of those mentally retarded just couldn't find out what they can because some of their disabilities were generalized into one big disability....

The author of the article is a mother comparing her first pregancy where she did not get a prenatal test for Down's or her second pregancy when she did get a positive test for Down's.   She was treated differently by people when they found out she was pregnant with a Down's baby.

"Parents who choose not to bring a disabled child into this world don't make the decision because they don't value mentally handicapped people or don't want to be around a child or adult who is not "normal". They do it because they think the pain will be overwhelming and they are afraid they won't be able to bear it."

How do you know what a parent is feeling about being pregnant with a "disabled" child?  You don't.  This is a huge lie and spin you are putting on us.  What is the purpose of the prenatal test anyway unless the baby will need medication or treatment in vitro -- it is for abortion because people are not valued.  The same will happen when a prenatal test is made for autism.

"They do it cause think the pain will be overwhelming, and are afraid THEY won't be able to bear it." When did being the most selfish person on Earth, qualify someone for parenthood more than someone who is giving? For the 100th time, when you have a child it comes with responsibilities. They're not little dolls to show off to your parent friends, they're people. If it's too much to bear, get a pet. Although, in some situations I think that might be too much for those selfish kind of people to handle.

What's interesting is people who think that parents who decide not to have children, are somehow selfish in not bringing someone into the world. I feel knowing you are not able to raise children, and therfore not having children is just as responsible as having children and taking care of them properly. It's alot different than these parents who have a disabled child and go, "Oh no, my dreams of having a little Barbie or Ken doll to take around to all my mom friends, and brag about them as a reflection of myself are over!"

If someone has a perfectly "normal" child and they have an illness or accident that turns them into a "diaper wearing drouling idiot" or a "disfigured monster" and the parents reject that child because of those events --- the parents are considered bad.  If the parents have a prenatal test showing their child has some "defect" such as possible retardation, physical abnormalities or even just a cleft palate, it is fine for them to abort.  

Diversity, no matter the cause, should be accepted.

I agree, one problem with those tests is that there's a lot of false positives, so otherwise healthy pregancies were aborted because of the test. Even if the child turns out to have Downs syndrome or other genetic "defect," it doesn't mean that they shouldn't have been born.

I was not told until recently, but my mother was told to abort me when she was pregnant with me, because of her age, combined with her first pregnancy almost killing both her and my oldest brother (and they thought back then that the difficult birth was why he was "different", different being the word they used because autism wasn't well-known).  Obviously she didn't go through with it.

Well, what's your opinion on the hard-birth theory?  I realize you are up to date on the latest autism news; however, I am not.  Pardon the naivety.

So, does a problematic birth "trigger" autism?  Is it a cause?  A contributor?  Or none of the above?

I'm sure it could.  Or it could be because of some attribute of an autistic baby.  It's not known and it's probably both at different times and often neither.  I do know however that in my family there's a long history of autism whether the person's birth was difficult or not.