Two Years Ago We Learned a Lesson about Down Syndrome

Two years ago, in October 2011, Dr Brian Skotko published the results of his survey of families of people with Down syndrome. It proved that the overwhelming experience of raising a child with Down syndrome is one of happiness, pride, love and transformation. Read Dr Peter Saunder's comments on the survey in the British Blog Christian Medical Comment. and on Life News.

Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% planned to remain involved in their sibling’s lives as they became adults. The vast majority of brothers and sisters described their relationship with their sibling with DS as positive and enhancing.
In the second study parents of children with Down’s syndrome (DS) were asked how they felt about their lives. Of the 2,044 respondents, 99% reported that they loved their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them.
The overwhelming majority of parents surveyed reported that they were happy with their decision to have their child with DS and indicated that their sons and daughters were great sources of love and pride.
But the third study was most interesting of all as it explored the self-perceptions of children with Down’s syndrome.
At the same time as Dr Skotko's survey was published, the new prenatal tests to detect Down syndrome were rolled out, the first being MaterniT21, which use a sample of the mother's blood and, in the 10-12th week of pregnancy can give a probability of Down syndrome approaching 99% according to the manufacturer. These are meant only to screen high risk women to send them on to have amio, however, its widely believed that many women may abort their children with Down syndrome based upon this and similar tests.
Of 284 people with Down’s syndrome (DS), ages 12 and older who were surveyed, nearly 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked.
In his first study , 822 brothers and sisters were asked about their feelings and perceptions toward their sibling with Down’s syndrome (DS).
More than 96% of brothers/sisters who responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS.

Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. A small percentage expressed sadness about their life.

Yet, at the same time, new prenatal screening tests for Down syndrome, the first being MaterniT21 were made available to the public. These tests can with high accuracy, diagnose several genetic conditions ,among them Down syndrome.  So we got good news just in time for a potential spike in abortions as more mothers avail themselves of these early tests which require only a sample of the mother's blood.

This was a cruel juxtapositon of events, especially knowing that the public would be much better informed about the prenatal tests than Dr Skotko's survey.
But I didn't take it quietly, I blogged about Dr Skokto's information, and then, I published my own testimony, "A Special Mother is Born", the very same week.

We have the information we need to make good decision, life affirming choices and avoid the ones which will destroy us and our families. But will we listen?

Scalfari Did Not Record Interview with Pope Francis, I Would!

As of this week, I have been writing for seven years. I began on this blog and quickly expanded to writing articles online and in print, and editing a book of 34 stories from parents of special needs children. I never took a journalism course, because I was an English major and avid reader. But I admit there are a few finer points of journalism I might not understand, however I understand the ethics of journalism.

Number one rule of journalism, if you are going to quote someone, QUOTE THEM ACCURATELY!

I have been honored to interview movie stars, producers and politicians. My reputation as a journalist restsupon my integrity. If I were to interview an incredibly important international figure, like, say the Pope.
I would record the interview (on multiple devices) and take notes.

Got that?

But according this report, 88 year old Italian journalist Scalfari did neither.

Respected French Vatican writer Jean-Marie Guénois confirmed with Scalfari that he didn’t tape the interview, nor did he take notes, so the text was an after-the-fact reconstruction.

I am dumbfounded and outraged as I think of all the Catholic writers who are parsing every single word in that interview without taking this into consideration. I would hate to answer to God about why I misquoted the Holy Father and misled millions of Catholics. I think Scalfari owes us and the Pope an apology. 

AND if you ever read this, Your Holiness, and want to grant me an interview, I promise to record the interview and take notes. 

HT Simcha Fisher

Read more about the interview in Catholic World Report.