Last week our family went skiing in the mountains. While K & I were waiting in line to buy a lift pass the lady standing next to us asked me a question that I hear often.
"How old is she?"
I am often asked this. The people inquiring recognize her extra chromosome. I'm sure they are genuinely kind & well meaning. I know that they look at my sweet K & think she's adorable & just want to start a conversation. What bothers me is that it is very rare that they ask the question of K herself. My daughter is judged on her ability to have that conversation before she has even opened up her mouth to speak. If she had 46 chromosomes would virtually everyone address that question to me? I don't think so. My other kids got asked this same question & proudly answered while holding up the appropriate number of fingers
My response?
"K, this lady would like to know how old you are."
As always K proudly held up 5 fingers & announced " I'm five." ......................& as always, the conversation continued. As we waited for our turn they talked about skiing, school & lots of other things that five year old girls enjoy. I hope she was able to change that lady's perspective that day.
Later that day as K negotiated a curve on the ski hill bundled up with her face obscured by her balaclava & helmet, a snowboarder went by & called out "Great skiing!" to which K responded with a thumbs up. Later, a ski patroler passed us on the hill & applauded her efforts & told her she was doing a great job. With her face covered, neither had any idea that K has trisomy 21. They spoke to her, not to me, but to K herself.
This is just a small example of how K is sometimes treated differently because she has trisomy 21. While no one is intentionally trying to segregate K, that is what is happening.
There is a man with Down syndrome living here in Canada who did a neurodevelopmental program just like we are doing with K. He excelled in school & went on the college where he graduated with his typical peers in his field of choice. He can't get a job. He even successfully completed an internship but although he did well he has not been able to get a job in his field of choice. It is assumed that he can't do the job well because he has trisomy 21 so time after time he is passed over.
Amongst our local community of family & friends K is treated just like the other kids & I am glad for that. I think my little girl is changing a lot of the perceptions about trisomy 21 locally & I am thrilled but it needs to happen on a larger scale.
Awareness is important but I wonder if there isn't a better way to go about it. If people with Down syndrome were treated with fairly & with the respect that they deserve then would we need to have awareness campaigns?
One national Down syndrome organization announced that they were celebrating World Down syndrome day by wearing "odd socks".Thankfully they have changed that to Lots of socks which is an improvement but is that really they message that we want to be sending? Really, what message are they sending? I haven't quite figured that out yet.
The other thing that crosses my mind often is that the other half of the problem is that most parents of children with trisomy 21 probably aren't even aware that we don't have to "wait for our kids to accomplish milestones in their own time". There are things that can be done. The progress my daughter has made due to her neurodevelopmental program is phenomenal! I know of other kids who are seeing fabulous results through a targeted nutritional intervention. This information that needs to be shared! We need to create awareness of the possibilities for our kids with trisomy 21.
Right now, life is sometimes overwhelming with K's intensive neurodevelopmental program, farm life, my part time business & our older girls sports activities. Besides my blog & the Unlimited Potential forum I don't have much extra time to devote to this so for the time being a lot of my advocacy work will be done like I described above. Eventually I hope to have more time to devote to this but for now, one person at a time I will let my daughter speak for herself.
The International Down Syndrome Coalition has created a video for World Down Syndrome day. The theme is "I Am". I chose today not to do an "I am" post created for K but if we ever meet in person I will allow her the oportunity to tell you for herself:
" I am Five!........................& whatever else ends up being the topic of interest in a five year old's conversation that day.
Enjoy the video
You're right saying that we need to change perceptions about down's syndrome, but I think awareness campaigns can help.
ReplyDeleteI liked the idea of Lots of socks, in my opinion the message was: even if different (because they are different, we can't deny it), we're all human beings, we function the same way, we can be useful the same way. A sock, even if in a different color or material, it's still a sock, it keeps foot worm. A person, even with an extra chromosome, it's still a person and has the same rights and obligations towards society, if only we let them express their potential.
Of course when all the society will see diversity like part of being human, we won’t need awareness days anymore (for down’s syndrome, for women rights, for any other diversity…), but since then I think these campaigns, even if sometimes the message is not "perfect", can reach a lot of people and show them children and adults with down syndrome and what they can do.
In the other end, it’s very important to make parents or future parents know that there is a lot they can do to help their kids, but that’s another job and I think you’re doing a good one with your blog!
I enjoyed your post Laura, thank you. I too have mixed feelings about any kind of so-called awareness days or events for anything actually and even though I support events like International Women's Day and Doctor's Without Borders events, etc. I too wish that they didn't have to exist. Knowing that the intent of all of these groups are honourable and intended for good, as a collective we seem to have to band together in order to make the changes that need to be made and once those are made we can dissipate and stand alone not seen as same or different but just as is...
ReplyDelete~ Ellyn
Way to go, K! And Laura, I have to say that your advocacy work here and on UP trickles down! You have been a big help to me and others in helping our little ones so that they can "speak for themselves" one day too. Thank you!
ReplyDeleteJust found your blog and started following. Have a wonderful day.
ReplyDeleteThanks for your thoughts everyone & welcome Wendy!
ReplyDeleteLuna - I think part of my problem with this particular campaign is that I just can't get over the fact that they started the campaign as "odd socks"' It just seemed to me that they were unknowingly telling the world that people with T21 are odd or different. Then when they changed it to Lots of Socks it just seemed pretty meaningless to me. If we are going to promote awareness I would like it to be more meaningful. I think awareness needs to involve some sort of action not just talk. I'm sure we agree on lots of other things so I think we'll just have to agree to disagree on this one:)
I just discovered your blog, and it looks awesome! Looking forward to following your journey a little more!
ReplyDeleteAlso, it looks like you live in Canada (and close to a ski hill!) Whereabouts are you folks? We are in Calgary, that is why I ask!! Nice to "meet" you!!
Hi Karen
ReplyDeleteIt's nice to meet you too! I messages you on your blog but if that didn't work please email me at jtkkmom@gmail.com
Laura