Monday, October 15, 2012

Day 15: Q&A Part III: About Healthcare Professionals and Friends

Saturday afternoon, preparing to ride a pony at the DSANV pumpkin pick
Today is very exciting for me!  I just discovered, through a random commenter on another post, that my post, Advocate, is now up on Mamapedia for the next 3 days!  Hooray!!  And thank you to the folks at Mamapedia for giving me this opportunity.

I realized that I had a lot more questions from my Q&A than I'd originally thought, and, being a fairly long-winded person, I have long-winded answers.  Here are two more questions I've got answers for, with more to come in the upcoming days! 

Q:  As a student midwife, I always wonder how the attitudes and reactions of healthcare professionals impact parents of children with special needs, particularly in the early days.  Is there anything you would change about your postnatal experiences if you could?  Is there anything that could have been done better to support you?

A.  I hear way, way too often, horror stories of people's immediate post-natal experiences when having a baby with Down syndrome and no prenatal diagnosis.  I've heard of bleak outlooks being spewed by uninformed healthcare professionals, proclamations of "I'm so sorry," coupled with a here's your baby, have a nice life kind of attitude, devoid of any useful information or resources to help new parents on their way.  This always makes me so sad, makes me realize that there are still no many unenlightened, stuck-in-the-dark-ages doctors and nurses out there, who just need someone to show them the real truth.  Not that Down syndrome doesn't come with its challenges or health issues, because it certainly does, but to give a new and emotionally vulnerable parent so much negativity, without so much as a hearty Congratulations on your new baby! or a link to a local Down syndrome association as a reference is unconscionable. 

Our situation was what I recall to be a little unusual at the beginning.  When Samantha was born, I was actively looking for markers, asked, while still in the delivery room, how long before we'd know if she had Down syndrome.  I don't know why, but it was just a feeling, before I even saw her.  The doctor, not expecting to hear that, took a closer look at my baby, said "Hmmm..." and walked out of the room.  Steve cornered the L&D nurse outside a little bit later, asked her if she thought Sammi had Down syndrome.  Slightly nervous at delivering that kind of news, as it's not her position to do so, she nodded. 

I don't actually recall any doctor coming to formally tell us.  Once Steve let it be known that we knew, the ball began to roll, the visits from cardiologists, social workers and who-remembers-else began.  While I am, in retrospect, a little bit disappointed that nobody came to sit with me and tell me outright in a professional capacity, we still felt supported by the hospital and its staff.  They all gave us congratulations, the packet we received from the social worker was packed full of useful new parent information and resources, and the nursery staff all bickered over who would get to cuddle and rock my baby when she was away from us.  They, too, felt a need to protect her.

While my experience was good, many hospitals and healthcare professionals still have a lot to learn about this kind of thing.  I hope their eyes can be opened by other parents and advocates...

Q.  Does Sammi have any friends?  Does she have DS and non DS friends?  Always curious what other moms do... 

A.  Ooh, this is a tough one.  And one I kind of ignore, mentally, to myself, avoiding the honest truth of the matter.  And the honest truth of the matter is that Sammi does have two types of "friends."  She has the real friends, or, rather, the ones I know to be "real" friends, who do have Down syndrome.  We have playdates, she talks about them when they're not around, and she gets so excited to get to play with them.  I don't know if it is an instinctive connection, or if it's just because I seek those kinds of friendships out for her.  They're easier to maintain, easier to understand, and I don't have to worry about what the other child thinks about her, if they're wondering why she doesn't talk like they do, play like they do, etc.  And I, myself, feel a stronger connection to their parents.  The other type of friends she has are the ones at school, the typical friends.  But because I'm not at school with her, I really can't attest to the nature of those friendships.  Her aides and teachers all tell me that she sits with them at lunch, and that they're all very good with her, but I think it may be more of a protective, older/younger kind of relationship structure.  We don't get invited to their birthday parties, or for playdates, and, to be honest yet again, I don't know how well either would go anyway.  I am not sure if I'm protecting her, or protecting me.  I'm happy they look out for her.  I'm happy they're kind to her.  I'm happy they humor her.  But what else do I want?  I want fulfilling friendships, ones that she can relate to, ones that I can trust.  And that leaves me...where?  I'm not sure.  I think Samantha will have to pave the way with her peers at school, to determine for herself what the nature of those friendships will be. 

7 comments:

Chromosomally Enhanced said...

Oooh love these questions and answers...I think changing the way we are told is the most important factor in taking the first steps to educating yourself about parenting a child with Ds...it is having hope and not feeling world is against you...and friends are tough...i am so glad this question was answered! Great insight! Smiles

Leah said...

What a great response about the friendships. I have friends who really emphasize having their children interact with a lot of typically-developing kids. And that's great. But I do want Cora to have friends with Ds too. I feel that she may appreciate that interaction and might enjoy not feeling different, even if that is not considered the most ideal thing to say. And in truth, I too relate to other parents of children with Ds so much more easily too. It's nice to hear you reflect some of my thoughts but that they are real to you and Sammi. And I love that you expect her to develop her friendships and interactions as HERSELF.

Anna said...

So most of her real friendships presently are with children that have Down syndrome and her acquaintances are her classmates? I wonder if as the school year progresses if she will start to be invited to parties? Maybe as the years pass they too with become friends. Some things take time. Yes?

JaybirdNWA said...

Becca, I agree with you that Doctors could do a better job when it comes to delivering the news of a child with Ds and educating parents. It is my experience that it really makes Doctors feel awkward. My wife used to not be very good at it and was probably not very compassionate about it. But we had John and she has a new perspective on the subject. There are not too many Doctors that have children with Ds and it is sometimes difficult being one of the few that has a child with Ds.

Heather said...

I don't have many expectations about friends. So is much more different then alike, then even hers peers with DS, that I really have no idea what lies ahead. I do know that in her classroom,the peer models adore her. I mean literally fight over her. Although they are younger then her, they think she is younger then they are. So in many ways, they baby her.They play with her hair and dress her up and for now, that is okay. She is loved and accepted for who she is. They, the other children, do not see different, they she just Zoey.

Love your posts lately. Well, I always love them but you are rocking these '31 for 21'

Kristi said...

Thank you for answering my question:) Right now Avery dont really know or hang out with anyone that is her age that has Ds..but i think it would really benenfit her to find some:) But at school she is in a regular classrrom and all the children love her and just accept her for her..to them she is just Avery and that is ok for now too but in the future we will see...

Melissa said...

Ah, the friends thing... I've got a post started that sort of touches on it too. I need to get back to it, but haven't got all my feeling sorted out quite yet.

On delivering the news, we had a similar-ish experience. We mostly knew prenatally that Claire had Ds. We knew about her heart defect. We had people in place to watch her health right after she was born. We told the nurses that we didn't want to hear I'm sorry. But...until she was born, we didn't KNOW. And no one told us either. I guess they figured that we knew because of the markers, the heart defect, whatever. But our official news came as we asked our nurse daily if the blood work was back. No, we weren't shocked, or even surprised, to find out that she officially had Ds, but it would have been nice for the doctor to take 5 minutes and deliver the news.