Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Thursday, December 1, 2011

She said what?!

First of all, I just want to clarify that this is not aimed at anybody in particular. A lot of friends and family have been asking about the "right" things to say.

What is the correct way to refer to a baby/child/adult with Down syndrome? How about by their name ;) It's seen as hurtful by a lot of parents to have their kids referred to as a "Downs baby". The "correct" way to say it would be "a baby with Down syndrome". The same language, referred to as people first language, actually applies to people with autism as well! Also, you probably don't want to say "She's downs". Because really, she's a person, not a syndrome. Abnormal, retarded, etc... are also not correct, for obvious reasons.

Some parents also get offended by comments like, "They're always so sweet!". Referring to all people with Down syndrome as "they" is kind of stereotypical. So is saying that "they" are always sweet! First of all, no kid is always sweet. Kids are kids. Second of all, it can take away something that a parent might assign as a personality trait and make it into something that is a trait of Down syndrome. Maybe their kid is really sweet because they're doing an awesome job parenting!

Maybe God will give you a miracle! Lauren is our miracle. She truly is. The vast majority of early miscarriages are caused by chromosomal abnormalities, which includes Down syndrome (trisomy 21 is the medical term). We are being given a miracle baby that beat the odds. Truly, I feel that way. A lot of parents with kids with special needs feel that way. Down syndrome is our miracle.

You can't really know for sure until she's here. Sure we can. An amniocentesis is over 99.9% accurate. False positives are because of human error, aka switching up of samples somehow. Lots of people claim to know someone or that they themselves have had false positives and their baby was "normal". Generally, they had screening tests, not diagnostic testing done. Screening tests such as the nuchal translucency test, quad screen, anatomy scan, etc.. can give odds and anything over baseline for age is considered a "positive screen". A CVS test or an amnio are the only way to get a positive diagnosis. Our odds based on age alone for having a baby with Down syndrome were 1:1250. Once we had the anatomy scan and lots of things were seen on the ultrasound our risk was 80% or more. That would be considered a postive screen. We chose to have the amnio and got a positive diagnosis.

So, you're done having kids now, right? Maybe. We'll re-evaluate when Lauren's a little older, which has been our plan before we even got pregnant. Our odds of having another baby with Down syndrome after Lauren are 1:100.That's 1%. Maybe those are odds we'll be willing to take. Maybe they won't be. I'm not sure yet! We want to be able to provide financially, emotionally and spiritually for any children we choose to have. The good thing is that we don't have to decide right now.

Maybe she won't need open heart surgery, you can't know that! The awesome thing about having a baby in this day and age is that there are so many medical advances out there at our disposal! The other wonderful thing is that we're conveniently located about 30 minutes away from The University of Michigan Hospital. We are being closely monitored and very special attention is being paid to Lauren's heart. Believe me, I'd give anything for my baby not to need open heart surgery. But we're accepting this diagnosis and instead of praying for her heart defect to go away, we're praying for wise and skilled doctors and nurses to take the best care of Lauren as possible.

My hope is that I haven't offended anyone by writing this. None of this applies to anyone in particular. Nobody can always know the "right" thing to say! I'm sure I've said a lot of this stuff to or about people because before we jumped head-first into the "world of Down syndrome" we had no idea about anything. So thanks for reading and feel free to ask any questions, either here or in person. I mean that! If I don't know the answer, chances are I should and I WILL find out for you!

5 comments:

  1. Lauren is so lucky to be blessed with the love and support of her amazing family. :)

    ReplyDelete
  2. I say this is a great post. It's better to get this out there now. I still deal with family member's calling my daughter a Down baby. Finally my husband told his dad what we'd prefer. Even if it hurt him for a second, it's been somewhat hurtful listening to people that love Cora call her by terms we think are offensive. And congratulations on your little girl. I can't wait until we get to hear about her in person.

    As a side note: our baby had OHS at 11 weeks old. It was scary and stressful leading up to it, but now it's like it never happened. It's all worth it!

    ReplyDelete
  3. Thanks for the encouragement Leah!!

    ReplyDelete
  4. Hi Jackie,
    I work with Anita at NorthRidge and get to hear how highly she speaks of her family...of Ryan especially and now Lauren! I'm majoring in special education right now and I just wanted to tell you that your blog is an inspiration to me. Lauren is going to be an amazing little girl :)

    ReplyDelete