Guest Post: Beth Craver
Six years ago I was a Down syndrome rookie. I was learning the ropes from people I met through social media and my new BFFs over at GiGi’s Playhouse. Their mission screamed acceptance and I was completely on board. My bags were packed and ready for advocacy and enlightenment.
My message would not bully. Instead, it would meet people where they were. I would keep in mind my relationship with Down syndrome before Judah. I would gently educate, with a smile on my face and cute yellow and blue ribbons twisted at the end of my pigtails. I was ready and I would change the world.
It was easy…..Convincing people to love our baby was a piece of cake.
In actuality, back then, I think acceptance meant accepting ME. Accept that I have a child with Down syndrome now. If you love me you will join us on Down syndrome walks now. You will buy your own cute yellow and blue ribbons, you will post pictures of Judah on your page, stop using the R-word, purchase his calendars and open your eyes to the world of disabilities.
Honestly, folks, my people exceeded all of that. They still do. Nobody wavered. No-one turned away from us. (But also, how sad that I thought they might) and today Judah’s army continues to hold strong and grow. They have an arsenal prepared to love bomb the world with what gift Judah is. And my God how I love them for it.
But (why does there always have to be a but?) my vision of acceptance has morphed. It’s changed because it has had to. Acceptance is no longer convincing my friends and family that Judah is worthy. They always thought he was. And I know that now.
Before this year, I had been mostly exposed to kindness. I’ve seen hundreds of people come together to raise money for people like Judah. He had teachers that showed up for him more than they ever had to. His doctors collaborated tirelessly to help him be successful. And strangers would smile and laugh at his antics.
But this year I have been tested. I have had more teacher/doctor/dentist/people battles than I have in all his years before this. I have had to fight. I have had to investigate, rally his advocates, call managers, and demystify preconceived notions. I have shake-your-head stories this year that would take you hours to read. Some of the more notable: when I brought 8 of my own people to his IEP meeting and when I taught the head of a medical building how to do better for kids with cognitive delays. Look, there is no more rewarding purpose than helping others understand the inner workings of someone you love …but it is also exhausting. And just being aware of Judah’s existence is NOT acceptance.
Acceptance is accepting that he needs more and giving it to him: more time, more patience, more directions, more understanding, more tools.
It is understanding he also needs less and giving that to him too: fewer words, less stimulation, less clutter, less hasty transitions.
Acceptance is actually changing your world a little bit to make sure everyone fits into it. True acceptance may actually inconvenience you.
I read an analogy the other day that really struck me. It involved being stuck in traffic. We all know that feeling of having to wait when we are in a hurry. Now imagine how you feel when you see that one car ride the shoulder and cut up to the front while you remain in line. Well, that’s how our most vulnerable feel. They feel stuck in line as we zoom past.
The very least we can do is not budge them. However, when we accept, we actually let them go ahead. We happily wave them on as we stay just a little bit inconvenienced.
Acceptance isn’t hard. In fact, it’s a lot easier than living in a world that doesn’t really get you. Acceptance is: fair, equitable, and the right thing to do.
We invite you to join, support, and cheer on Team Joys of Judah! Can you help them reach the $321 goal by 3.21.22 and earn their custom yard signs shouting all our pride in who Judah is?! Visit HERE to help!
Local friends, we hope to see you on April 30th, at Willow Bay Park! Learn more and get involved today!