There are a lot of voices in the Down syndrome community. They are rich and varied and they do not all speak for me. They do not speak for my family, or for Tessa.
(I think it’s important to interject here that Tessa’s life is hers, as is her voice. It is not my intention to speak for her throughout her whole life. However she manages it, she gets her own voice.)
I have found the variance in these voices surprising. I had a single story of what I thought Down syndrome looked like in a family’s life. While some have been empowering in their words, well, I did not know how difficult some of the other voices would be to hear.
Recently, I sat in a talk given by a very loud voice “for” individuals with Down syndrome. Toward the end of her speech, she said this:
“I know we talked about moms from every category, and I know they exist because unfortunately, I see every category at (the organization she runs). I’ve seen it all, every day, um, I see kids succeeding, and then I also see the kids that are failing. And I know why they’re failing. And it’s really hard to not be able to step in and help change that and sometimes they choose a lifestyle and there’s nothing I can do about it.”
^
I cannot tell you how much my heart ached when I heard those words.
If you are a mom of a child with Down syndrome… you need to hear this: Your child is not failing.
It doesn’t matter if he has no words or uses assistive technology to speak. It does not matter if she cannot walk 10,000 steps a day. It doesn’t matter if you are not ready to call someone out for using the word “retarded.” It doesn’t matter if he doesn’t write his own name on his paper. It doesn’t matter if she wears clothes from Justice until she is 65 years old. Your. Child. Is. Not. Failing.
Please hear those words and believe me. You are doing a good job, and so is your child.
If you have not heard the TED Talk about The Single Story by Chimamanda Ngozi Adiche, it is linked above. It is a really great talk, and very much worth 20 minutes of your time.
Yo soy La Lay 
Thank you so much! I really needed and appreciated what you wrote!!
So glad I was in the right place at the right time for you! ❤