So many of you asked how you can get more involved in the Down syndrome community when you don’t have a loved one in your life who has Down syndrome.
Gosh I love ya for thinking this way!
Before I answer the question with some practical ideas, I want to challenge our thinking a bit:
The words “Down syndrome community” are used A LOT! Because, well, it is a thing. And in my opinion, it is a magical, privileged “thing” to get to live in day in and day out. However, I think a lot of us in this Down syndrome community would love for there to just be a…community. I would love for Macy and August to wake up, eat their oatmeal, go outside and be a part of their community…or our community.
The fact still remains; it is not that simple. We continue to live in a world in which Down syndrome is so very “other” the need for a “Down syndrome community” is pronounced and therefore exists.
Don’t get me wrong here, I love this community, and I spend a heck of a lot of time in it. But in all fairness to the rest of the world who do not have the honor of spending your days with a person with Down syndrome, I could see how you’d begin to feel left out. I can see the richness and the depth of character and the stamina and the joy and the grit and the adoration which we are knee deep in as members of this “Down syndrome community” and it leads me to believe the rest of the world needs what we’ve got. I also happen to be a gatherer and an includer, and the thought of people missing out on Down syndrome, frankly, it bums me out. I hope and pray our “Down syndrome community” morphs and stretches, into, simply, “community.”
That being said, an answer to the question:
The first step towards this “community” will always be closer relationship to the people in it. So for those of you who desire to make that happen…blessing from above my friends!
Let’s start here: The greatest impact Down syndrome can have on a person is direct contact in a loving and mutual relationship. If you do not know a single person with Down syndrome, (apart from Macy and Augie as squares on your phone) then you will need to get creative and strategic. Remember, developing a friendship or relationship with a person with Down syndrome will be just like if you were to develop a friendship with any complete stranger. So make sure anything you do that seems creative and strategic is something you would do with the cool guy or girl who sits in the coffee shop who you’ve always wanted to be friends with. If your plans for friendship wouldn’t work with that person, then they won’t work with a person who has Down syndrome. And remember to always go into it with the attitude of learner, knowing, like any healthy relationship, this should be mutually beneficial.
Okay, some practical’s: I suggest visiting http://www.ndss.org and searching for local organizations. Then, head to your local schools. Parents, if you have a child in school I can almost guarantee you there is a child with Down syndrome at your child’s school. Find that parent, ask her/him if they need help advocating for their child at school and if the answer is yes, advocate for that child! If all the children with Down syndrome are in a separate class in the corner of the school, walk into your principal’s office and throw a fit about it! I cannot tell you what this means to me as a parent. I feel loneliest at school. Then, make a playdate for your child and the student who has Down syndrome. Then do it all again.
If you are not an extrovert like me, then there are somegreat organizations you can team with by donating to them and/or helping them get the word out. I will recommend the following:
All of these organizations are working so hard for “community” for all. Because of their hard work I can more clearly see a world where this questions would not even need to be addressed. I cannot say enough good things about them.
I hope this information was helpful. Please, if you have any further suggestions leave a comment.
I love you all…I really do!