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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

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Friday, June 30, 2006

I feel raped, used and oh so love my son.................

Indy’s Child parenting magazine decided to use Nash and two other children from IDSF on their cover, Anthony and Mackenzie, in a nice summer pool setting, not to promote summer fun, but to use them for the “Maternity Issue” with a big tag line by their heads “Understanding the Results is Key for Prenatal Screening Tests" topped off with an article written by a woman that had prenatal testing but said “We’re fortunate. Our child was born without Down syndrome”. (ok, reluctantly acknowledging the copyright to Indy's Child)

No “other side of the story” to assist with information from a parent, who has a child with Down syndrome, no information about the Indiana Down Syndrome Foundation contacts for parents that have positive results for Down syndrome if they chose prenatal testing………nothing. Nothing to help provide accurate information to the parents who receive a prenatal diagnosis and to try and decreased the uninformed percentage that choose to abort their child that has Trisomy 21.

I am devastated. I feel our kids were used, for all the reasons we fight against. I feel all the efforts we put forth for inclusion and advocacy were just flushed down the toilet. I am devastated on a personal note, because I was led to believe this was a positive spin on our kids, and something I could cherish as something wonderful for our son and our local Ds community. Instead, Nash was used as a reason, for all pregnant moms, to do prenatal testing........like some kind of freak.

I am trying to get past the emotions but can’t- Jeff is on the phone to gather input from his buddies at our local ARC on how to respond, but it has to be in a positive way. Right now I feel anything but positive…………

More later when I can focus.

UPDATE: For those wonderful people who want to write their side of the story to Mr. Wynne, the editor, here is the information.

editor@indyschild.com

Indy's Child Magazine
Attn: Tom Wynne, Editor
1901 Broad Ripple Ave.
Indianapolis, IN 46220

Here is the article if you would like to read it. Thank god its been pulled from the Indy's Child website along with the cover picture.

7/6/ UPDATE

Received a call from the VP of Indy's Child today. The Publisher and the editor (married couple) are in London vacationing and will return July 10th. Profusely apologetic he was, they never have received a response like this, positive or negative, in their 20 year history, meeting to be scheduled asap upon their return. While its good to be acknowledged, what is sad is that he said they had NO IDEA what they did.....we have some advocating to do people.

37 comments:

Tara Marie said...

Jan, I was just about to send you a reply to your e-mail......I feel like I watched the 'rape' as I was so excited from the photograph that you shared with me and how incredible it was for promoting understanding and inclusion....and the to have that absolutely precious photograph but associated with the whole 'prenatal testing' issue without any balanced articles or even contact information for those that might get a prenatal screening test with a soft marker for T21.......I actually feel like throwing up right now.

I'm so sorry you sweet little boy was violated like this.

Tara Marie said...

On a positive note....I do believe a picture tells a thousand words and the positive image of T21 in the photograph was wonderful....I thought from the get-go how wonderful it was to show the normalacy of T21 in the waterworks shot...so the image has strength on its own.

Anonymous said...

Oh, Jan, what an awful thing! That photograph was such a joyful look at how "normal" our kids are, and to have it abused this way is unconscionable. You're showing far more restraint than I would be able to, and I only hope that there will be some way you can respond to this and counteract any damage that's been done.

Hugs to you, it sounds like you need them...along with a big ol' glass of wine.

Amy & Emma

trisomymommy said...

I agree with Tara Marie about the picture -- it speaks for itself. But even so, they DID use you and they deserve the full force of your fury.

Laura & Ryan said...

Jan, just tell me who I need to email, phone, harass, etc..... This totally gets my NEW YORK blood boiling. We will not let this happen without a fight. The bastards, how DARE they.

L

Betsy said...

I am shocked. My jaw is on the floor. Honestly, this kind of stuff HAS to stop.

Just last week, our local newpaper did an article about my friend Anne who has started a "Challengers" division of Little League Baseball for children and adults with all kinds of challenges.

Anne has done a wonderful job - she has her 18 year old "typical" son pitching, and every week, he shows up with 15 or 20 of his own friends who join the game...so its a whole mix of people...really an amazing thing to see, true integration in its most beautiful sense.

The newspaper article mentions Anne's son, Tyler, who is 15, and has T21, and is so, so smart --he goes to a regular high school, and does very well...anyway, the article says, "Anne started the group because her own son, Tyler, has to CONTEND with Down syndrome every day.

Can you believe that?!?! My goodness--I was ready to boycott their office, hold up picket signs, etc...she was much more forgiving.

Time after time, I see examples of this in the media.

Honestly, how DARE they do such a thing with a picture of your child, and not allow you input?!?!

I understand how you can't fire away with both barrels, because it makes us look like radicals (God forbid) -- but honestly, there needs to be a public acknowledgement of this HUGE oversight of theirs.

I'd feel raped too...

I'm sorry you have to deal with this.

RNP said...

Wow, I don't even know what to say. That is just awful, and I am so sorry that you were mislead this way.

Beth said...

Jan,

Ugh... I am spitting nails for you right now, too.

There was an article in the Fort Wayne Journal-Gazette this past year about three different families who had prenatal testing to determine the health of their unborn children. One of the mothers had two older sons and a daughter whose life was cut short due to the decision of the mom to terminate the pregnancy upon learning that she would have Down syndrome. She was quoted as saying that she just couldn't stand to think of her poor, sick baby having to suffer that way.

Poor? Sick? Suffering? Nash sure doesn't look like he's any of those things to me and neither does our Jude. Far from it!

I hate this kind of one-sided propoganda that does nothing to educate people about the reality of having a child with T21. Yes, there are problems inherent to the condition, but it's not the horrible tragedy that some would make it out to be, for heaven's sake. Every child, those with 46 and 47 chromosomes, has his or her own issues "to contend with"--that is part of being human. T21 is no different.


I wish a publication like Indy's Child could have shared the perspective of parents of children with Down syndrome or at least offered the support information that you mentioned.

I'm with Laura & Ryan---I'd love to
write a letter to Indy's Child and give them a piece of my mind, as positively as I can possibly muster, of course!

I agree with the others...the photo of the kids is positive on its own, and it is something that you can cherish in time after you are not feeling so angry about these circumstances.

Sorry you have been hurt by this.

Betsy said...

I can't stop thinking about this. Its as if that magazine has taken the picture of the three kids, and played that Sesame Street game... "two of these things are kind of the same...which one doesn't belong"

It makes my stomach flip every time I think of it.

Jan...please let me know what I can do to help. I am certainly willing to write to anyone that you would like me to.

I also know its up to you and Jeff about what the next step should be...

You posted the link to my letter about termination - I'm sure you are going through the same feeling I did -- just wanting to wrap your arms around Nash and hold him tight forever.

Betsy

mum2brady said...

Jan - thinking of you and sending huge hugs your way. I feel your pain.... Let me know if I can write a letter, because I totally feel it was inappropriate of them to use the photo that way - and it is such a darling photo - really capturing the spirit of our cutie pies...

I'm so sorry they did this :( Hugs!!!

Kris said...

I am just sick Jan. I can hardly speak. I am thinking and hoping though that the backlash will bring about something good. I hope anyway.
All my love,
Kris

Annette said...

oh Jan,,, I'm so furious right now. A rebuttal of some kind HAS to be done.. I think it might be good coming from the Indiana DS association. As a parent of a child with T21, I feel used too.

Mauzy said...

Thank you all.....I knew you would feel the pain as I do. Its just a big hole in my stomach right now, turning into raw anger. I am going to start drafting my letter tonight. IDSF will do all it can but it was my son on the cover....who represented all kids. But still, my son. It really burns. Write the editor if you can.

Mauzy said...

Betsy- I can't find your email. email me ok? I need your brain for a minute...

jehjms@comcast.net

Penny L. Richards said...

Hi Jan, I heard about this from Nicole's blog. I just posted about your story at the Disability Studies, Temple U. blog:

http://disstud.blogspot.com/2006/07/cute-kids-betrayed-parents.html

I hope with more attention, the editors will feel more urgency in making amends here--they should apologize to you and the other families, and they should give their readers better information in future.

Tammy and Parker said...

I am totally floored. I remember seeing this incredible picture. (You have to know that Reed and I follow Nash as we use him as kind of a role model for what we hope Parker will one day be able to do.....I hope that okay. =) Let's just say that Nash has quite a few fans out here in Utah and even my mom and dad know to whom I refer when I speak of Nash.)

Someone messed up really badly. I know in the last article that was written about Parker much more was put on his having Ds than all the medical issues he faces.

The Ds is NOTHING.

I would be happy to write to the address you gave on your blog.

Big hugs,

Betsy said...

Jan, I am emailing you right now! As soon as I have two minutes, I'll post about this on my blog too, so that others will see it...

BetsyBiskt@hotmail.com

Shelley said...

I just want to add my support to all of these others! In the article the writer says that she needed to know more about prenatal testing - quite frankly she would have been better served finding out more about the wonderful children we know who happen to have DS! No wonder I am more afraid of society and its appalling attitudes than I am of my daughter's disability! At least a picture says a thousand words - and that picture is gorgeous - full of life and fun.

Anne Eason said...

You can't undo what has already been done so I would use this as an opportunity for the magazine to run a front page story on all of the positive aspects of having a child with a disability and where families can get information.
If the magazine will not do this willingly, then consider a lawsuit. The reporter knew she was being deceptive. If she doesn't make the proper amends, sue her personally, in addition to the publication.
You can also try the case in the press, let the national newspapers and TV stations know what the magazine did, and use that press release as a forum to educate people. Use this as an opportunity to educate the entire United States. You can make something good out of this. Here is your chance to rise to the occasion.
Ask your Indiana state-wide DS organization to write a letter on your behalf, as well as our national organization. If it speeds things up, prepare a draft letter on their behalf, for them to use as a template.
By the way, the photo was SO BEAUTIFUL! I believe that the photo itself will send a positive message about a happy family and children who are valued and loved.
Anne

Beth said...

Jan,
I just put this on my blog, too.
My parents live in Indy. I will definitely get them to write a letter to the editor. I sent mine yesterday...

I'll bet Stacey W. is seeing red, too. Have you talked to her?

kim said...

First time reader saying I just sent the magazine a letter after reading the piece and your blog. I'm horrified. I'm not a parent of a child with Down Syndrome, but someone who used to work in Special Education. Following is my letter to them -- I wasn't nearly as angry as I wanted to be...:

Dear Editor,
If only you had as much reverence for the beautiful children and their families featured on your July cover as you do for the tests you discuss in your article. Only then would you realize what a horrible disservice you have done by using them the way you have done. They are gorgeous, wanted, amazing children who will grow up each to contribute to the world with no less impact than you or I. The final sentence of your piece does more to show your ignorance to this fact than it does anything else.

As someone who has spent countless hours working in the Special Education field, I have firsthand knowledge of the impact children with Down Syndrome, and a variety of other disabilities, can have on ther world. Articles like this serve only to further marginilize children and adults with disabilities by characterizing them as genetic mistakes that must be dealt with as opposed to the gifts that they are.

The families on your cover deserve not only a public apology, but a space in your magazine to educate and inform your readers about their lives and how Down Syndrome has affected them personally. I believe you and your readers would be surprised by what they have to say.

Sincerely,
Kimberley P.

Gimpy Mumpy said...

I am in shock. That is such a beautiful picture, how could they twist it for such a purpose?

Perhaps as others here have said your family photo will send it's own message, far beyond what the narrow minded editors of that magazine could have intended.

Shelley said...

I don't know how useful a letter to the editor is from Australia but I sent one anyway! Hope that you are all feeling the love and support coming your way!

Michelle said...

I finally got a piece up on my blog about this too. I hope the magazine makes amends by doing an actual article on families raising kids with Down syndrome and showing another side of the story.

Mauzy said...

thank you all! I am going to print your blog responses if that is ok, and if you also emailed or wrote a letter could you email it to me as we are getting our meeting scheduled with the editor and we want to present a folder of responses. thanks!
jehjms@comcast.net

Kari said...

Aww Jan that is so vicious and horrible! This sickens me. I am so sorry your beautiful Nash was used and violated for such sickness!

Camille said...

Jan, I know of you because of our mutual friend, Betsy. If you read my blog, you will find out about Emma, this beautiful daughter of mine who came along without any testing. I DIDN'T WANT ANY... Any regrets, never one. I also felt your rape. I shall write a letter to the magazine and, of course e-mail you a copy. You have a wonderful boy and you are riding this huge wave with dignity; the more power to you. If you need anything else from me, please, please let me know either throug my blog or through Betsy,

Jen said...

hey granted i have two fairly normal kids (my oldest was diagnosed with adhd) i chose not to go with the prescreening because i was willing to take the risk and as long as it was a "healthy" kid with ten fingers and toes that is all i cared about. in the article THEY should of been able to have given names of orginazations or e mail adresses for places that would be able to give info. or leads for people whom have downs syndrome. from the limited conntact that i have had with people with downs they are really wonderful people and that are capeable of allot of stuff with minneamal asstance.

Jeff said...

Thanks for posting all this babe....I love you and am damn proud of you!

blue said...

Jan, I found your story via Penny Richards at her Disability Studies, Temple U. blog and wrote my own blog post about what happened. http://thegimpparade.blogspot.com/2006/07/childrens-picture-used-as-worst-case.html

I hope this attention helps the editors understand their misuse of that beautiful photo and the children.

Mauzy said...

Wednesday Morning update 7/6
Indy's child pulled the cover and article from their website. Still no call to us yet...keep you posted.

thank you all again!

Michelle said...

I got quite a few responses on my blog post about this so if you want to print them please go ahead. I emailed you the letter I sent as well.

They seemed to have taken action fairly quickly considering it was a long weekend ... it's a start that they pulled the cover and article from the web; hopefully you'll hear from them soon with regards to a meeting.

Anonymous said...

I have read the article in the paper and most of the comments on this blog. I have a friend who teaches developmentally challenged children. I was asked to share my thoughts. Please allow me to share them with you.

I was given the paper BEFORE the link to this blog.

Personally, I think the photo on the cover is lovely. Everyone is so happy! I flipped thru the magazine reading the articles. I DID NOT associate the front cover picture with the article you are all talking about. Actually after reading it and then him telling me about this blog I had to go back and re-read it again. Jan - to you I would just like to say please don't feel violated. From an outsiders point of view I saw a very loving picture...and some incredibly happy children. (I wished I was there!) I didn't pick up on this notion of violation until I came to this blog. As for the article - it was what it was. I came away from my first read of the paper remembering the photo, not the content. The PICTURE is WONDERFUL and spoke volumes beyond what any words can say.

Thanks for letting me share.

Mauzy said...

thank you for your comment anonymous. I agree the picture is wonderful! As for the tag line which links the readers to the article that contains biased, and also inaccurate information (ie children with Ds are born with physical abnormalities) my reaction is quite a bit more than "it was what it was". You wouldn't happen to work at Indy's Child do you?

Anonymous said...

Hi Jan, No, don't have anything to do with the paper. I do work in insurance. I was recently in a discussion about people and their perceptions - and that is why my friend showed this to me. I cannot claim to understand and surely did not wish to minimize. Please do accept my apologies if I sounded that way. Kindest regards, Anne

Anonymous said...

Are you fucking kidding me? Their editor should be fired if he/she is so insensitive that they couldn't see, in less than 10 seconds, why that was a horrible cover. I don't blame you for being mad, I'm mad for you! I hope you get more than an apology. DS kids are beautiful angels, and to set it up like "thank God we got tested and our kid is 'normal'" isn't fair, or honest. I doubt anyone feels like their child is the "worst case scenario". Ah, my heart is just breaking for you guys, what a violation of trust.
hugs,
lauren

Anonymous said...

this is horrible, and twisted and devoid of any journalist ethics.
abusing your trust and your family like this - shows what of what kind their "concern" is.
the editor - well i can think of a word that would describe her, but well.
sorry but's all i can say about this.

but the picture indeed is beautiful. you are blessed with wonderful children.