T 21 Traveling Afghan

Doing a blog search on Down Syndrome the other day I cam across the Little Miss E blog. It is like many other blogs that I've come across the past few months, a personal one started by a parent, usually the mother, to share with the world what life with DS really is about. I often wonder if most parents who have children with various developmental issues become instant advocates as it seems to be within the DS community.

I have learned quickly that I must become an advocate for Umar simply because the services aren't really here. I will have to fight schools to accept him, if he is up for it, and have already planned out a course of action. If it works will be a whole other issue. I became not only an aware parent but one that is willing to swim against the tide when it comes to the benefit of Umar in a country and culture that isn't in his favor. I do it because I must, but I question if it is something that I would do if I lived in the US where so many services are available.

I think the older kids are having a tough time understanding what DS really is. They ask, we talk, I explain but Hannah is stuck with fears which leave here constantly saying "I wish Umar didn't have DS" to which my reply is "Than he wouldn't be Umar". Jihad thinks that anyone who looks a bit different to him has DS but hasn't grasped that it is the nature of Umar that will be different. He insists that Umar will grow up to kick butt like him (let's all thank Mr. Man) and simply doesn't grasp that it won't be in his nature, his core being, to be mean and seek to kick butt to those that offend him.

I'm finding from talking to a few other moms that our children will have a lonely walk in these countries (Saudi and Bahrain). That they will find themselves the odd ones out and when they look around it is hard to find someone else like them. It is difficult because there is a lack of proper organizations that seek to bring families together, because schools don't mainstream even if children can make the grade, there still a large social taboo, governments have failed to service individuals and families with special needs, and those that can, leave to seek services in other countries those that can't tend to find themselves alone.

So as an instant advocate how does one share with their children that Umar isn't alone, that there are so many in the world just like him? How do I get my children to accept what DS is when I find a hard time putting other faces to the term? How can I, in a very lonely place when it comes to DS support find myself surrounded by so many other families like us? With an idea of a traveling afghan is how.

Quite simple, an afghan is going to travel the globe to families who have a member with DS. It will stay with one family for a bit, an entry in an accompanied journal will be made and it will be shipped off to the next family. Each new family does the same and gets to see the growing entries in the journal. We are on this list and hopefully the journal will have quite a few entries in it before we receive it. This way my kids will see there are many other individuals who have DS in the world and it will no longer feel like it is something so strange and unknown. They can put real faces to a term and figure out things are O.K.

Interested in joining? Simply click the image above.