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.