Okay, it isn’t really a critique of the panel discussion today as much as a critique of me. And, more honestly, it’s mostly about what it means to Thorin to know people talk about Down syndrome.
After the HuffPost Live discussion panel today— I was fortunate enough to participate in–I picked Thorin up from the sitter– Trish-the-Amazing-Human– and found they watched the show. I was a little surprised because I don’t know if it would have occurred to me to have him watch.
Aside here: Thorin did watch the Ink Master episode with the client/artists who had Down syndrome. We watched because we — Thorin, Ward and I–are all fans of the show (don’t judge me). Thorin screamed when he heard the words ‘Down syndrome’ come out of Dave Navarro’s mouth. He loved the episode.
He has also seen the first two episodes of Born This Way the A&E reality show about twenty-somethings who have Down syndrome (again don’t judge me). Both episodes were previewed by my sister before we watched. He liked when the young people with Down syndrome talked and got bored (and upset once) with the parents. I have already been told he probably shouldn’t watch the remaining episodes. The ones he saw he loved.
I thought of Oprah describing as a child calling neighbors and sharing: “Colored people are on TV! Colored people are on!”
It is clear Thorin wants to see himself — his Down syndrome self — on TV.
Okay, back to today. I did a test run earlier in the day with the executive producer of the program, Kara Ramonetti. Thorin walked in as I signed off with her.
“Who’s that?” he asked.
“A woman named Kara.”
“What she want?”
“She wants me to talk about Down syndrome and probably you.”
“Oh!” he said, “Good!”
“Really?”
“Yeah. Good.”
Later at Trish’s I asked what he thought:
“Did I do a good job?”
“Yes.”
His friend Ella (of the Totally Normal series) was also there and had seen the show. Both liked the photo that had been shown with them together.
Trish told me Thorin yelled: “Mommy! Mommy! Mommy!” when I wasn’t on screen.
In the car on the way home I asked:
“Is it okay I talked about you and school?”
A little hesitation, “Yes, okay.”
“I told the the truth, right?”
“Yeah.”
“Can you tell me what you liked that I said?”
Silence.
“Is there anything you liked?”
“Yes.”
“What?”
“Thorin.”
“You liked that I talked about you?”
Mommy
“I did. Yes.”
“Good. That’s why I did it.”
Thorin drew a picture of me during the program. I think I look a little like a Mother Hen. I am totally cool with that.
a typical son 
The only word I have for this is: Awesomesauce.
(don’t judge me)
He is usually such a ball buster. I was quite relieved:)
Good eye, Mother Hen!!
insert-smiley-face. I love whatever it is.
hahaha…That is fantastic!
I can totally *hear* that conversation taking place between you and Thorin as I read it!
I now have to find those episodes you mentioned, sounds like something I would enjoy. I don’t watch a lot of television, so need good recommendations.
Say “Hi!” to Thorin for me!
Pam
He says “Hi!” back:) He also said this but I didn’t put it in post: “Should be more Daddy, too.” We pointed out Ward’s photo was included:)
Fantastic!
Kari – Bravo for participating on this panel. Thanks, Thorin for supporting your mom.
I commented on HuffPost and here’s what I said:
Thank you for airing this discussion.
I think it’s important to note that we can’t generalize about disabilities and bunch everyone will every type of disability in one big group. My daughter had multiple disabilities. Maybe David Perry’s son doesn’t struggle, but my child did throughout her short life. Only the Democrats talk about paid sick leave and increasing the minimum wage. When a disabled child is sick, the parent must forfeit wages to stay home and care for the child. When a person with disabilities needs assistance 24/7, a higher minimum wage would encourage the hiring and retention of quality aides. This is very much an issue about funding. I know of no Republicans who are in favor of these critical measures.
Sorry for delay! I love and agree with your comment. I wished there had been more opportunity in the discussion to address need.
It’s important to open the discussion. That’s what you did. It took courage to do that.
Thanks, Harriet:)