Tuesday, February 3, 2009

She's Famous ... and Changing Lives

My baby girl {Payton} ... she made the cover!

Our local Down syndrome group put together this brochure for new parents. I was contacted and asked if Payton's picture could be used on the cover ... how sweet is that?! It makes me so happy that her little face is among the first that will be seen by new parents.

I may be biased ... in fact, I know I'm biased ... but how could you see her little smiling face on the cover of this brochure and not have a teeny tiny sense of relief that maybe, just maybe ... your baby will be okay.

As you open the brochure, it has a special message for new parents. The message essentially lets them know that although their baby has an extra chromosome, that their baby is still just a baby ... he/she sleeps, poops, cries and eats just like any other baby. The message lets them know that individuals with Down syndrome share more characteristics with their families than they do with each other. The message lets them know that individuals with Down syndrome can lead very normal lives.

On the back side of the brochure, there is a listing of contacts for our local Down syndrome group, as well as contacts for local resources ... such as Early Intervention services by county ... and national resources ... such as the National Down Syndrome Society.

So what does any of this really have to do with anything?

Well, I'm glad you asked!

I have been following the blog of a family that recently received news that their unborn baby boy has Down syndrome. Today, Adrienne {the mother} was talking about the lack of information that she received after suspicions arose that her son may have Down syndrome.

This is very common and it needs to stop.

It is called Changing Lives ... a program designed to educate physicians, nurses, genetic counselors and other health care professionals on the clinical and developmental needs of people with Down syndrome. The Changing Lives Program was developed by the National Down Syndrome Society for local groups to present to the professionals in their area.

Ideally, a Changing Lives Program will …

  • Educate professionals on the medical and developmental needs of people with Down syndrome and the best-care practices to address them.
  • Prepare professionals to deliver diagnoses and other sensitive information.
  • Provide information on local and national resources.
  • Supply materials and information for new and expectant parents.
  • Foster on-going relationships between professionals and parents.
But the problem is not enough local groups are embracing Changing Lives and running with it. My local group has this program, but I'm not sure how much has been done yet. {Note to self: email the person that is heading it up and get involved.} This program means so much to me because of exactly what Adrienne ... and the rest of us ... experienced.

After Payton was born, I was handed a brochure that was titled ... "Breastfeeding the Down syndrome child." Hello ... I think it was published in 1942! Not to mention the fact that reading this title seems to infer that THE Down syndrome child is not even a child at all and that his/her life has no value. How about A child with Down syndrome? The information was outdated and that is the purpose of Changing Lives.

So what are you doing to support Changing Lives? If you work in the health care field, have you heard of such a program? What can you do to help?

Let's brainstorm people. We can do this. We can help parents who receive a new diagnosis ... be it prenatally or after birth ... to have the information that they need.


  1. that picture is one of my favorites

  2. What a fantastic brochure (and beautiful cover!)

    Do you think I could get a copy of it? I'd love to take it to our local groups as an example. The material here could use a facelift, too...

  3. That brochure is exactly what I think is needed and yes, if I saw your little Payton I would definitley think wow maybe it will be okay because honestly I don't know if I had ever seen a baby with DS and I'll admit I was a little concerned- like, will he look really different. I guess I should check to see if my center is involved in any way with Changing Lives. Just putting a brouchure would be a start. Why would doctor's offices have a problem with that? I do know a girl that lives in my area that made up a "business" card with her info. and her little boy's picture on it and gave some to her ob office to give out to anyone that receieves a prenatal diagnosis in the area. I think that's a great idea. Why would anyone not agree to do that-it's just- would they remember to hand it out?

  4. Wonderful. I want a copy lol
    The brochure I was given had cute kids (of cause) but they were old picks from years back there hair cut in that short bob look, that yelled Down syndrome. I couldn’t stand to loo, I know that sounds bad and I feel so bad for saying it, but I bet no-one will turn away from Payton’s smiling face.

    I told you over a year ago possible two (as if you needed to be told Hahahah) I knew this child would change the world.
    WTG sweet girl. Keep going forward Bethany! this is the stuff that counts, those first impression. the first words your read, the first bits of information. and that first photo you see all matters.
    Weather we like it or not it’s a fact, kids like ours are losing their lives because people cant deal with many things including the way they look. It’s sad and I hate talking/thinking about it, but just look at Nika and others like her. How cool if Nika could be on the cover, in her home country

  5. Wow!
    I am impressed Bethany!
    God has a plan for you in the DS realm.
    You are so positive and your kids so adorable!
    I can not wait to see where God takes you and your family!!

  6. Great stuff Bethany, and Payton - Feel free to refer people to our Flickr group site - Down Syndrome in the Family - we have some great discussions going on there. It helped me in the beginning - tremendously.

    My Flickr friend, Jennie, created a great pamphlet too about her daughter Zoe. It's on her website: http://lopsidepress.com/zoe/

  7. She was so cute (and still is of course!) We actually have a Turner Syndrome brochure/book that is being put together as well by our parents group. Alana is not in it because the deadline to send in photos and info was while we were moving at the end of September and I just didn't have the time or even know where the stuff was they needed etc. I think its awesome, I too was handed a brochure (prenatally) that looked like it was designed in the 50's lol. At least the title was better then yours it was "goog things come in small packages" (Turner Syndrome girls have height issues). But the pictures were naked girls with blacked out eyes and body parts.. obviously made by the medical society. So not what you want to see :-P. It's actually still with her mountains of baby and doctor memorabilia. It was the first thing I had ever read concerning turner syndrome.

  8. Well of course she should be on the cover! She's gorgeous, just like her Auntie Carmen... :)

  9. Bethany! You have got to be the best blogger out there! You know exactly whay to say and how to say it! I wish I had been given a brochure with that precious picture of Payton on it. I would have looked at my husband and said right away "I think we are going to be A-okay :)" P.S. are you going to the Valentines Dance on Saturday?

  10. Hi Bethany,
    I found your blog through Adrienne's. Congrats on your daughter's picture being chosen for the cover!! She is gorgeous!!
    I love the business card idea that Adrienne mentioned in her comment. I am going to call my ob's office and see if I may be able to do something like this.
    Thank you for this post.

  11. I can relate to all of this post. I got the same 1942 brochure that you did on breastfeeding.
    I am working on my local hospital and ARC group to get our message heard! I did get the book "GIFTS" bought by our auxillary to give to new parents in clinic or at the hospital. MN has a whole brochure called the "Down Comforter" that is wonderful and full of great information with a couple of free books and soft blanket to boot but my social worker on my unit (Family Birthing and NICU) doesn't hand it out all the time because she believes you have to wait until the "official" diagnosis. Oh stop it! So these poor parents have to wonder WTH until the lab comes back? Ridiculous if you ask me but she is the professional. Ugh!
    BTW--I do love that picture of Payton...

  12. 1942......hahahahaahhahah....omg....I can't stop laughing about that!!!!
    ps: I KNOW I would have been relieved to see sweet Payton!!!!

  13. I love this idea and I'm going to look into starting a changing lives program in our community. Our only source of support is a 'lame' support group for parents. We went once and didn't find it to be "supportive", but depressing - not a good resource for new or expecting parents.

    Our community seems to be a quiet supporter of termination. I wasn't aware of this until my own pregnancy, and even after Charlie was born. Now that I'm expecting our third child I will be visiting a different OB - one that will be supportive of our decision to keep our baby - no matter what.

    Last fall I was inspired to raise awareness about DS in our community and spoke with the genetic counselor in our county (she sees ALL of the women who receive a diagnosis or deliver a baby with Down syndrome) and told her that I would love to give each mom a copy of Road Map to Holland or Gifts -free, no strings attached. I did this because of our negative experience. She declined my offer on the basis that she couldn't be "biased." Never the less, I've been giving the books away through my blog, but I was blown away by the attitude of the ONE woman in our community that will be speaking to pregnant moms who will be facing the most difficult decision of their lives. Talk about biased!

    OK, I've written a small book here, but I've been re-inspired to get back out there! Thanks ladies!


  14. Hi Bethany!

    I would LOVE to get a copy of your brochure! I know our local DS support group would love to see it so they can create one too!!

    Payton is SO darling!!

    I could send you a SASE (self-addresses stamped envelope)!!

    Thank you very much


  15. Bethany,

    I am currently in the process of creating a support group in my area and plan on approaching the NICU and Maternity ward and OB's in the area eventually. I would LOVE a pamphlet as reference or example of something I could put together here on my own.

    I too would send you a SASE.

  16. Cameron's pic is also in the pamphlet for one of our local support groups and it really does feel so good to have his face be seen by so many new (and likely scared) parents of children with Ds and (hopefully) think it will all be okay.

    Oh, and thanks Bethany - now I have ANOTHER blog to read.

  17. This is an awesome thing and its awesome to see beautiful Payton on the cover! :)

  18. I LOVE that picture of Payton. I saw it in the DSANV calendar the year Matty was born and fell in love:)

  19. Hey Bethany !

    Thanks for posting about this issue

    We have the same trouble in Canada. Over 90% of mothers who are Prenatally diagnosed with a Baby with DS terminate their pregnancy. Can you imagine life with out Payton and Addison... /cry

    here is a link to my post for a petition in Canada that hopes to do that same thing. We want Doctors, Nurses and health care practitioners to properly inform parents about DS so that people can make an informed decision as opposed to a decision out of fear of the unknown.


  20. How cool to have Payton on the cover and they couldn't have picked a cuter kiddo....well I have a cute one too ha-ha. Anyway, I would love a copy and if there is any way I could get some help. I have been wanting to do this same thing for the past few years. Email me with info if you would like or get a chance...narrettog@yahoo.com

    A brochure????
    WOW I didn't even get that....just the "pity look" oh well what did those stupid doctors know? I think it is so important for these moms to realize what potential our kids have and what they can do, and what a joy they bring to our lives most importantly