Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, March 21, 2016

World Down Syndrome Day 2016

Monday, 3/21 is World Down Syndrome day 2016, to honor the three copies of the 21st chromosome, which is what makes Down syndrome. 

We have lots of reason to CELEBRATE our children. Down syndrome is just a small part of who they are (but it is absolutely a part of who they are!) But our world isn't all about Ds anymore. Its about living, learning, and joining in society even when the world deemed our kids as worthless and of no benefit to the community which some of them were born. Down syndrome is our normal here, and I forget about it most of the time. The purpose of World Down Syndrome Day is to bring awareness to the fact people with Ds, our children included, are people with worth and are valuable members of society.

Angela: If she just had Down syndrome, life would be so much less complicated. Now that we know the medical secrets hiding in her body, we know that NONE of her health issues have ANYTHING to do with Down syndrome. Just getting rid of the high ammonia level has affected her ability level in drastic ways. Suddenly she can write much better. Her speech has changed for the better - even with her hearing loss! She has impulse control like she has never had before, and her ability to reason has also improved. She's even reading better. She is a completely different person than she was just six months ago. Down syndrome is not her issue, it is everyone else's problem.

Axel: Such an amazing kid. A true caretaker who would make an amazing dad someday. He frequently goes behind the people in the house, putting away things we've left out because we were going to use them again in 2 seconds because we are apparently not capable of cleaning up after ourselves. Axel's speech was profoundly affected by his years in the institution. Years of nobody talking to him, or caring for him on a daily basis, left him unable to make the words he needs. Axel has a lot to say though, he just has a tough time getting it out. It is amazing to me how much Axel has recovered since becoming part of our family. No, Down syndrome is not his issue. It was everyone else's problem which is why he is left without a voice.

Abel: Number two without a voice. Sadly Abel is probably the most institutionally damaged child of all our adopted kids. Home 3 years, he is still very much a feral child. I don't talk about him much here because, to be very frank, sometimes it is hard for me to find positive things to say. He *IS* making huge progress thanks to the amazing staff at his school. Everyone from the office staff, to his teachers and support staff, to the phy. ed. teacher have helped him to make great leaps in his ability to function in the world. But I won't sugar coat things here. Abel will never live independently. He will always need extremely close supervision to keep him and others safe. Down syndrome isn't his issue. It was everyone else's problem which is why he was left to develop such primal survival skills in order to have his most basic needs met. Imagine having to threaten his institution caregivers with physical harm just to get a drink of water or an extra bite of food.

Asher: A third child without a voice, stolen because of one culture's fear of those who are different. A problem solver with an amazing sense of humor. Asher will never talk more than a (modified) word here and there, and yet he is an amazing communicator. There is never a question what he wants or needs, or of what he's interested in. Down syndrome isn't Asher's issue. It was a problem for everyone else and it is the fault of a society that he has no voice.

Audrey: Our fourth child without a voice. Our fourth child who has to learn to function in a world after 8 1/2 years locked away, severely neglected, because she has Down syndrome. A child so smart, so capable, who now appears to others to be severely autistic and ambivalent to the rest of the world. But those who know her well? They can see who she really is inside there. A strong, opinionated young lady who knows what she wants. Down syndrome isn't her issue. It was a problem for everyone else, and is they who hid her away from the world, preventing her from becoming the capable young lady she was meant to be.

Amos: Child number 5 without a voice. who will probably be forever a toddler because the world in which he was born didn't feel he was worthy of life. So smart and cunning with amazing problem solving skills. The child who, because he had no exposure to LIFE, spends much of his time with anxiety so high he laughs maniacally while staring at the ceiling. Down syndrome is not his issue, it was the problem of everyone else who didn't want to be responsible for a child "like that".

Our kids have Down syndrome. No, they cannot do "anything they set their minds to". Two, at least, would like to drive a car but never will. All want to talk but for at least three of them its unlikely to happen. All want to cook for themselves, but for at least two it will never happen. All want to have purpose in life, and for two of them that will likely never happen. But all the limitations facing them are not because of Down syndrome itself, but due to society setting limits upon them at birth, forever changing the course of their lives.


Tamara said...

I think that has to be your best post ever. Bravo. and Amen.

Adelaide Dupont said...

Thank you for "It was everyone else's problem", Leah.

And for the "everyone else" who thinks / "knows" about this unworthiness on the spot.

Those are the limits that were set on "everyone else" at birth.

Humbled + humiliated!

Ellen said...

Simple and yet profound.