Thursday, August 30, 2012

Good Stereotypes are Still Stereotypes

It doesn't sit easy with me how little we hear from those with older kids with Down syndrome. There are a few, but not nearly as many speaking out as those with children 6 and under, or even 2 and under. It raises my alarm that things are hard in the later years- things that most people just don't want to talk or write about. Sad things. I know a lot of why newer moms are blogging/advocating just has to do with the times... it is kind of the it thing to do, a bandwagon per say (heck yes I jumped on it), to blog if you have a child with Down syndrome in this day and age. Its' biggest lure is the healing that writing brings. I recently experienced the closure age 2 brings of the diagnosis pain, but really, the hardest things to come are what happens from here on out.

I have a friend who is older then me. Actually, she is my moms age. I have found her friendship to be something that I crave, not only because she is a sweet, kind hearted person, but because she knows someone who is 29 and has Down syndrome. Her best friends daughter. And she has been close with this girl from a very young age.

I hear the stereotype all the time that people with Down syndrome are happy. And I always note that it is a stereotype. Like all stereotypes, they come from a source of truth, but at best are just generalizations. Brian Skotko, leading voice of research for the Down syndrome community, did a study a year or so ago showing statistics that 99% of people with Down syndrome love themselves and their lives. I mention that study a lot because it provides information on things I cannot yet answer from a personal experience with Fiona- she simply is too young to communicate if she loves her life or embraces that she was made different with an extra 21st chromosome. And while we are trying to break down old stereotypes of Down syndrome, you know, the negative ones, new ones are rising. Things like all people with Down syndrome love their lives. This 29 year old, she does not.

She hates Down syndrome. Actually, if you say Down syndrome around her, it infuriates her. She prefers it to be referred to as Up syndrome. She does not like that she looks different. She does not want to associate with other people with Up syndrome because it reminds her of herself. She so badly wants a boyfriend, but does not want him to be someone with Up syndrome. I know without a doubt that if she was asked if they could remove her extra chromosome, she would say yes. It breaks my heart.

I am dying to hang out with this girl. Because that is something else that is really hard for me to hear. Although everybody "loves" her and speaks highly of her, she does not have very many friends out side of her family. See, I have never really feared Fiona being ridiculed or bullied or people not liking her- talk to anyone who knows someone with Down syndrome- they always say how much they LOVE them, how they are so nice, so happy, so caring, so helpful. But do they include them? Do they invite them to girls night, or sit with them at the football games, or do a spa day with them? Maybe, maybe a little bit in the school years, but what about college? What about in their twenties, or thirties? Some of the fact why this girl doesn't have a whole lot of friends is because she shys away from the special needs community and activities- but why should only those with learning handicaps or almond eyes hang out with her? How guilty of this am I myself! No wonder she doesn't feel confident or embrace her beauty in her Down syndrome features- she feels excluded because of them.

I have had my moments of wanting to keeping Fiona around completely "normal" kids. Of wondering if doing Down syndrome play groups or special needs preschool is a good idea. Above all else, I want Fiona to be treated as a normal child is, and for her to feel "normal" or accepted and included with everyone. But I am also seeing a great importance of making sure she grows to fully embrace every aspect of who she is. Down syndrome included.

But when it comes to how people will befriend her... that is completely out of my hands. And that is scary. Really scary. I don't want Fiona to ever feel like this girl. To feel ashamed or hatred towards the way she was created. I want for not only people to like her, but to include her. One older mom, of a daughter with Ds who is in her 30s, on one of the Down syndrome organizations I am involved with said "Its after the IEPs that things get really hard.".This is why I crave to hear from older generations. I don't think us moms of toddlers make a full impact with our advocating about Down syndrome because we don't know. We are just repeating stereotypes, good ones, but stereotypes non-the-less when it comes to the later years. Because when a parent is faced with making a choice of life or aborting... its not the baby years they are fearing... its the adult. I can tell you that I love my daughter. I can tell you that it truly does not bother me that she is delayed at this point. I can tell you that I think she is beautiful. And I can also tell you that once you allow yourself to meet your little and fall in love, no problem complication or delay will break that love. But I do not doubt life gets harder in the up coming years... greatly due to others ignorance, cruelty, and low expectations. Life with a daughter with Down syndrome can be wonderful. It is, right now, at 2. And if it does get harder, that still doesn't change my love for Fiona nor will it make me regret her life. I guess I am just saying, I am being more careful with generalizations. And I am going to try to make a new friend. The best way to get what I want for Fiona is to lead by example. And hopefully help this girl see the beauty in Down syndrome, the beauty in herself.

I keep meaning to share this here, but for those who have not seen IDSC(International Down Syndrome Coalition) for Lifes photo campaign, well first of all, you have to google it/them and see all these amazing photos they have been sharing, highlighting the value of life of those with Down syndrome. I love love love this organization who is actually not a pro-life group, just pro-accurate information. They are ones that are trying to help break stereotypes from all sides so that when a mother is faced with the unfortunate problem of being asked whether or not they want to continue a Down syndrome pregnancy, they will at least know the positive, beauty and blessings that come with the extra chromosome, not just the out dated doom and gloom view point most doctors give.

But more importantly, I have been helping IMDSA (International Mosaic Down Syndrome Association) launch their own photo campaign regarding awareness about the rare forms of mosaic and translocation mosaic Down syndrome. Such little is known about these conditions, Fiona has mosaic Down syndrome, and so few in the medical and therapy worlds have heard of them, they can go undiagnosed or under treated. I love being a part of both of these organizations and am having so much fun with IMDSAs photos. We launched it on Fiona's birthday two weeks ago, with Fiona's picture.

Since then we have also released photos of Treston, Emma and Grace, and Natalia. 

Please check out both of these groups on Facebook at  International Mosaic Down Syndrome Association and IDSC for Life. You won't be able to share these photos from my blog because I have photo protection up for my family photos, but please share them from the Facebook pages. The more that are exposed to these photo campaigns the more education and awareness will be achieved. 


  1. I have those fears...more times than I wish. I can't go to a basketball game, shopping, an amusement park, a school function, or a concert without worrying if Hailey will be included. Will someone be forced to include her or will they love her and want to be with her. I hope we get the answer of "yes" she will be included because I know how deeply our hearts wish for that. All we can do is pray and have faith that society is changing their opinions about Down syndrome and it will be a brighter place for them to live when they get older.

  2. Those pictures are great. I will have to look for them on facebook.

    I think the absence of blogs of parents with older kids is something to talk about. One thing I have observed is that as kids get older (46 or 47 chromosomes), parents are more protective of their children's privacy online. I have several blogs that I follow who told stories about their kids until the child(ren) reached a certain age, and then the stories kind of stopped. Many moms talk about needing to have their child's permission to share about them online. Privacy becomes a concern. Honestly, I'm already feeling this with my 7 year old, and I'm not sure how this would be different with Ben. Thoughts?

    In regards to the rest of your post, you are right on. I find myself looking at the other babies in the church nursery and wondering who is going to be Ben's friend in elementary, middle and high school. I wonder what that might look like and how I can foster relationship now and then.

    1. I think that is a completely valid point about privacy once the child reaches a certain age. That probably has a great deal to do with it. But there are a few people with Ds that blog like Sarah... I dont know I just think there should be more :) I feel like they make a much bigger impact when they speak up. Us newer moms, our views and opinions in the medical and survival of the fittest world, really, they get laughed at.

    2. Yes! It would be great to have those voices. But Sarah's voice is different than her mother's voice, right? And from my perspective, I'd appreciate hearing from both people - the mom and the child. But as a mom, there are limits to what I would feel comfortable disclosing about my teen/adult son or daughter. Did you read this post? It really struck a chord with me; I have so much to learn. Thanks for your post - I'm finding so much food for thought here.

  3. I agree, I wish there were more people out there - who have older kids with Down Syndrome - would blog. I would like to find them to share stories, to bounce stuff off them and to find out if we're the only ones going through this or that. I think one reason many more don't blog is technology. We didn't grow up with computers or the need to upload photos. Sitting down at a computer can be intimidating. I'm not saying everyone in my age range doesn't blog for that reason, I've just wondered if that was why some don't.

  4. Several things:

    1. This is an excellent, thought provoking post. You bring up a lot of good points in a very articulate manner.

    2. I think the older generation with older children with Down syndrome aren't on blogs because it wasn't the fad when their kids were younger so why start now? You're right- it's kind of the "thing to do" for our generation- although once we turn past the healing aspect of writing our blogs can turn into so much more than just describing how we feel about Down syndrome. I know several older individuals with Down syndrome, and I love hearing about their lives, but Deborah is right- these parents are VERY careful to protect their child's privacy so unless I see them IRL, it's hard to really get the full picture. Also, I can't help but wonder as the older and older their child gets, the more it is just their normal so the parents feel no need to write about it to the world because the conflict is lessened from that of just learning about the diagnosis. I also know a 25 year old who is JUST like you described. Hates her life- hates that she doesn't have a boyfriend- is very depressed- has severe physical problems (with no end in sight)- lives with her parents and has no friends- who does NOT have a diagnosis of any kind. It's easy to get caught up in the horror of what we "think" a diagnosis will bring in the future, but it's important to realize that ANY child can end up with an unhappy future based on the tools that we give them as they grow.

    3. I disagree with what you said about parents of toddlers having their opinions laughed at. Should we push our children into the future and talk about what that will be like? No- that's foolish for so many reasons. But should we share what we are experiencing RIGHT NOW in a way to help people understand the process and journey to becoming a parent to an adult with a disability? I think that is important and shouldn't be discounted.

    1. Deanna, we DO get laughed at. Not by everyone, but I have heard it, seen the rolled eyes, read the dis's. But highly educated minds that think of our children as less then perfect, not capable, they laugh at us beaming about our babies. Its the adults they want to point fingers at. They want proof that the majority of those who grow up into adulthood with Down syndrome are capable, beautiful people... and with only a handful of people showcasing that, they still will not take it seriously until they see a true majority. This is not my opinion nor am I am saying this is how every person feels, it is what I have personally come across. From personal experience I know me as a mother of a two year old cannot change the minds of this particular kind of person. But parents of 30 year olds? Or better the 30 year olds with Ds themselves speaking up, that would be heard by this group of skeptics. You are right, we should not stop advocating or blogging or speaking out because it is important. I know neither you nor I will stop :) But I see the impact the articles about older kids have on my friends who still put Fiona in a box. Even though I tell them Fionas possibilities are endless, its not till they read or see someone with Down syndrome attending college or getting married or driving a car that their eyes are opened to those with Ds full potential. Oh, and I didn't mean to imply that just because this 29 year old is not happy about her having Ds that Fiona most likely will. Just pointing out that this was a stereotype of those with DS loving there life that I fed into and I want to be aware to not let ANY stereotype shape how I raise Fiona. That I want to make sure she loves her self and her life not because she has Down syndrome nor to hate it because she has Down syndrome, but to love her self because she is Fiona. Period. As someone who struggled majorly with self image and eating disorders, I stereo-typically thought I dodge that bullet with Fiona. But I need to stop thinking that way. That she may deal with those issues, even if statistics say most likely she wont, its still possible... same as statistics say most likely she wont drive a car, its still possible. I enjoy your blog, your advocating and your adorable kiddos. No dis to you personally, no dis to any young mom blogger/advocate. Just hoping to encourage some of those further down this journey to speak up, to get their kids with Ds involved in advocating. Big dreams here because I do understand the privacy issue (as someone who shares everything this concept is sometimes hard for me to grasp :) I will be doing a follow up post highlight those with older kids that I do know, and what a blessing those blogs and books are.

  5. I guess I stopped thinking about those medical critics a long time ago, so I didn't notice that they were laughing. Your explanation here makes a lot of sense about the older moms making a bigger impact in that world. I agree with you, and it would be awesome to see more of them writing in the blog world because certainly they have a lot of wisdom to share and important things to say. I also agree with what you're saying about people positively stereotyping the future to counteract the negative stereotyping. I don't know what the future holds for Addison. But then again I don't know what the future holds for Carter either (I guess that's why I brought up the girl that I know with all the issues who doesn't hold a diagnosis). The longer I do this mother thing, the more I realize the gift is in the moment- in today. If I spend too much time worrying about the problems twenty years down the road, today falls apart. I guess I'm very thankful for the busyness of two kids two and under because it really helps me focus on where my energies are needed right now. But then again, I am SO NEW to the whole mothering thing as well as the Down syndrome thing, that no doubt people read my blog and laugh at my naiveté all the way around.(-: I look forward to your post on older kids that you know with Down syndrome. Sounds excellent!

  6. When when Kamdyn was a baby, we met Karen Gaffney. The only thing I could think at the time was that Kamdyn would be miserable and depressed when she grew up, because she has down syndrome. So I asked Karen what her feeli gs were about having DS. I wanted to cry when she said it wasn't a big deal to her, she could do anything she wanted, and she was happy. I realized that happiness wouldn't be about the challenges DS brought, but how she was raised and having confidence in herself. I love the new study that dr Skotko did where they found that almost 100% of people with DS are happy with their lives and like who they are. I believe that Kamdyn won't be any different. Love the pictures. They look great. I look forward to seeing them on Facebook.

  7. argghhh I just wrote an incredibly long comment and it got lost! Can anyone help me retrieve it?

    1. unfortunately I do not know how to help with that, nothing came through my inbox except this comment. Who is this?

    2. My name is Laurie and I have a son named Alex who is 16 years old and he has Down syndrome. I found your blog on Brandy's facebook page and this is my first time reading it. I just wanted to let you all know that I agree probably the reason us mom's of older kids don't blog is because it wasn't the thing to do when our kids were younger--we didn't even have email when Alex was born!!! I actually have a blog set up, but never wrote a post because since I didn't start at the beginning, I didn't know where to start!

      I wrote a long post the other day and because I have 3 google accounts set up I couldn't figure out what profile to use when selecting below so I lost the whole post! Now I know another reason why I don't blog!!

      I am pretty good at Facebook and use it very regularly, so if any of you would like to friend me, I would love to keep in touch that way and I would be happy to answer any questions that you have about Alex now and in earlier years. I have asked one of my very good friends and blogger, Jen (Cowgirl Up)to "tutor" me in blogging, so maybe someday I will start!! I do have lots of stories that I think may be helpful and now that I know that you all would like to hear things like that, I am happy to share.
      I am going to sign this as anonymous so it posts, but my name is Laurie Kowalski from Cleveland OH

  8. My 16 y.o. son Alex is a very happy person overall, but he is not always happy just like most people--he certainly has good moments and bad ones, but the good definitely outweigh the bad. I do think that he is happy with his life. He knows he has Down syndrome and he is ok with that. We never made it a negative thing with him or his siblings. When we had "the talk" with him about it I told him it was cool to have it and he just went with that. He has no reason to think that it is anything less than that.

    I feel that inclusion has been a big part of his success. We were not and are not all or nothing kind of parents...he has always been included in school and the community but he does have friends that have special needs as well. Some parents are very opposed to that but I have seen adults with Ds and MDs that grew up that way and they don't really feel they fit in with any group. That is sad to me. I have come to this realization recently---we have the freedom to choose who we want to be friends with, don't we? So why shouldn't our kids? I choose to be friends with people that I have things in common with. Most of my good friends have a child with special needs. That is who I feel most comfortable with. That doesn't mean I don't like other people or hang out with them to. This is how Alex is. He has lots of friends and everyone likes him a lot. We call him "Norm" from Cheers (you all may be too young to remember that show)but everyone knew Norm and called his name when he walked into the room. That is how Alex is--complete strangers to me know him wherever we go!

    Hope this helps...


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