After you have unwittingly signed up to be a family that includes a somebody with DS and you have gone through the meat grinder of understanding, or getting a basic grip or accepting or whatever the process was that brought you through the doorstep to your new life, you find that you are a member of a "club". You are, like it or not, part of a community that includes a vastly diverse group of people who all count a microscopic chromosome as the common thread that runs through them.
The best story I've heard about this was from a friend who recounted a couple, who had, only months earlier, a little boy with DS. They received an invitation to the local DS Christmas party. It gave the location, date and time, bring an appetizer to share! They wracked their brains for days trying to figure out just who this invitation was from. DS? DS? They considered work associates, distant relatives, neighbourhood associations, their personal acquaintances, but could not figure out what the heck the "DS" meant. It dawned on mom a few days later, the "club" they were now in and had not even realized, was the Down Syndrome club.
So, here we are, all together with that tiniest of reasons for commonality. We all share similar experiences and usually enjoy the fact that someone else has gone through what we are experiencing. It's so nice to be able to have the first hand resource of another parent and I think that being part of this club and having access to other families is what ultimately made things seem so manageable for me.
Of course, the Internet is another great source of knowledge and I enjoy the virtual visits to other family homes where I can see, almost first-hand, lives that include "a little extra". I understand that some families have more on their plates, different obstacles and just a different world view from mine, but their management skills, their tenacity, creativity, devotion, resilience and endless love, even in the face of sadness or disappointment, is so encouraging and strengthening.
So when I read about a supposed "rose-colored glasses" conspiracy, that the DS community as a whole, is trying to manipulate the truth about DS, I am really left to wonder. I have seen the accusations at various locations on the internet, that there is a rigid party line that means to convey Down syndrome only as a "It's a Wonderful Life" scenario. I have never felt that I was ever having the rosy-wool pulled over my eyes. I have met children with DS who were newborn right through to adults and I have never seen or experienced anything that made me feel scared or uncomfortable. I have seen parents write detailed descriptions of very hard days and I felt compassion and understanding, but never fear or anger that they were not "sticking to the party line that it's all pearls and rainbows".
I think that there are families out there that are living a "DS fairy tale", a very regular life that includes Down syndrome, a clear example of an average family going along in an average family way. I am also aware that there are families who have more challenges, strains and different ways of coping. The DS experience includes all of these, but I think that there are innuendos out there that the "happy family" is a myth. I think that does a great disservice to the families who are committed to normalizing their lives and carrying on. I have to believe someone when they say that their lives are a joy, full of happiness and complete the same as I trust the person who finds life to be difficult and stressful. Back in our "pre-DS" days we were fully aware that typical families are massively varied, from the smooth running orchestrations, to the train wrecks. Why would anyone think that would change with the addition of an extra chromosome? A DS fingerprint does not a family style make, and all types of families welcome kids with DS.
The DS "family" is like any family, with challenges and rewards, with hardships and achievements and I think we have to embrace one another for the unique angles we all bring to the collective story of family hood "with a little extra". I, for one, do not think that there is an upper echelon of Down syndrome associations that are trying to pull the wool over any one's eyes. Anyone can Google DS and find a hundred personal stories that range from giddy-with-happiness to a misery.
What is important for people to understand that DS is a very personal experience, and that we can all learn from each other's experiences and knowledge, to not discount either the joy or the sorrow that are both parts in our collective story.
5 comments:
Yeah, and we don't even 'have' it.
:)
A thought provoking post. I try to keep it real and talk about the good with the bad.
In the last 12 months since my child with DS has been born, I've been apparently living a fairy tale. But I was living one before I had this child. Everyone deals with things in their lives in their own way. There are people who always seem to have a dark cloud over their heads. If those folks have a child with DS, I'm guess in it doesn't just rain-it pours sadness. Every day of my life has been pretty sunny so far. My child with DS has added a beautiful rainbow to my sunny days that I wouldn't have seen if she hadn't come into it...no lies in my life - it's all good so far.
When we got our diagnosis, I thought there was a rosy glasses thing going happening with the parents I came across via the internet. I couldn't believe that they were really happy- I thought they were maybe in denial.
Now that I have a mostly 'typical' life, even with DS, I understand that the days are more like 'typical' days than they are like 'down syndrome' days. It's not denial, it's acceptance, I think. But from the outside looking in, I can see how it would seem otherwise.
Maybe you have to go through it to get it? I don't know.
Love this post...I am planning to write on the topic on Bridget's blog. There is as much of a range of experiences in DS individals/families as there are in any individual or family. If you Google any condition, you will find the same range of stories and perspectives--some ultra-positive, some downright depressing, and everything in between. I think what people are sensing is an increase in loving families trying to show that DS is not something to fear. I write and share (1) to help parents with a new DS diagnosis, and (2) because I know that every positive and realistic image of DS will ultimately benefit my daughter. Every mind/heart changed is a door left open for her instead of one closing in front of her--and keeping her from realizing her own hopes, dreams and aspirations. No one should be denied the chance to make their own distinct mark on the world. DS stereotypes are harmful and not always accurate. Things have changed in recent decades for people with DS. With greater understanding comes greater opportunity...
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