Monday, July 14, 2014

DS Convention, and Inspiration Porn

Sofia and I attended the National Down Syndrome Congress convention this past weekend, in Indianapolis. It was a nice to get away with my beautiful daughter (even though she was in a crabby mood some of the time). It was nice to see on-line friends in person. It was nice to see other 9 year old girls with Down syndrome exhibit many of the exact same behaviors as Miss Sofia. It was nice to learn some tricks and tips about managing challenging behaviors or how to teach her about puberty.

There were a few less-nice things, though.

1. Sofia is just not all that social. This one took me a bit by surprise.  But only a bit. On Friday, we went to lunch with friends. We had seen Amy and her daughter Emma this past summer, and I had been talking to Sofia about how excited we were. Emma was also excited to see Sofia. And we have not seen Michelle and her daughter Kayla since the Boston convention 5 years ago.

Sofia was not "into" seeing friends. We got together for a photo:
And you can see that Sofia was not going to cooperate.

She fared a little better with Kayla's brother, Lucas (who is really cute and difficult to ignore):
So we walked to lunch, on a hot day, on the wide, flat sidewalks of Indianapolis (it sort of reminded me of Washington DC). Sofia kept stopping, and eventually I had to carry her (making a mental note to ALWAYS bring the wheelchair!). She and Lucas did stop to pick dandelions (he was very sweet, handing her flowers).

We made it to our restaurant, which was very crowded, so we decided to order take-out and have a picnic (there was a nice park with tables out back). While we were waiting for the food, Sofia cooled off on the floor while Emma and Kayla chatted:

But it was nice to eat lunch with friends (and at least she did stay at the kids' table for a while):

The kids ran around while the adults finished up, and then we got a group photo:
Left-to-Right: Kayla, Emma, Amy P, Michelle, Lucas, me, Peggy, Cason, and Miss Grumpy-Pants

So much for that. She did perk up a bit after lunch, and we stopped into the Exhibit Hall to play a spot of tennis:
Mostly, however, she just wanted to check out the race cars. This being Indianapolis, there were several cool cars sitting around:



She did ok at Kids Camp, although she discarded her eyeglasses (fortunately, they had them at the check-in table), and she was hiding behind a curtain, watching traffic on the street when I came to get her.

The hotel was all-glass, and our room was on the 31st floor, with stunning views:

 What Sofia really preferred to do, of course, was stay in the room, watch TV and play with her hair/makeup toys.

Friday night she and I walked (ok, I wheeled, she rode) to dinner. David had suggested a restaurant but it was really expensive (he had been there, but for work, so he hadn't paid). Sofia and I settled for The Old Spaghetti Factory, which we'd gone to in Vancouver. Very simple, with gluten-free options, and yummy drink for mommy, and $30 including tip.

We came back, changed, and tried to go to the Dance. We got to the convention floor, walked in the door of the dance. Walked directly through the crowd to the other side of the room. Briefly got to see Amy and Emma. And then went to bed. (Ok, got Mommy a drink first). Sigh.

Of course, she woke up at 6:30 am every single morning. Despite the black-out curtains. First stop was the pool, which she had all to herself on Saturday. Then we got dressed and left the hotel to go for a walk.

Outside the first stop, we met up with another mom who was walking with her 12 year old son and a friend's 9 year old son. The 9 year old was tired and Sofia was peppy, so we gave him a ride. But when it came picture time, Sofia again would not join in:


And so we eventually said goodbye (and retrieved our wheelchair).
Sofia likes to be alone:

We walked to the Zoo, which would have been better if it wasn't 98% humidity. We did not stay too long. Walked back, and Mommy had a melt-down finding lunch, until we finally went back to the room and I called in a take-out order from the lobby restaurant.

2. Inspiration Porn and Militant Inclusion: While I was waiting for Sofia to finish lunch, I watched this excellent TedTalk by Stella Young. In it, she talks about Inspiration Porn. Porn is when you objectify another person so that you can feel good. She discusses the phrase "The only disability is a bad attitude" and points out that no amount of positive thinking is going to turn that staircase into a ramp or make closed caption magically appear on the TV.

So after Sofia finished lunch, I checked her into the Kids Camp again and I went to the General Session. First there was a militant Inclusion lady. (I'm not Militant Inclusion, especially when it comes to education. Sofia did really poorly in an Inclusion Class with 20 kids, a dozen of whom had their own learning differences. She does great in the Sub-Separate classroom; she still is attached to the Inclusion class for Art, Music, Gym and lunch, but gets her learning in small group or one-on-one, which works perfectly for her.)

So I was already kind of uncomfortable. Then, after the Inclusion lady, they showed an "Inspiring" video about a fellow with DS who is some sort of assistant coach for a football team. And, honest to gosh, someone in the video actually said, "The only disability is a bad attitude"!

As I was leaving, the football player who came on-stage to introduce the speaker started quoting John (from the New Testament), so I knew I was done. (And I did not feel particularly Included!).

3. Puberty is Gonna Happen: Ok, this session (how to explain and manage puberty to girls with DS) was worth the trip. I sat with Michelle and we took lots of notes about this terrifying topic. It figures, our kids are delayed in EVERYTHING... except Puberty.

When the session ended, I picked up Sofia (who had a better time in Camp this time), and we went up to the Concierge Lounge on our floor for hummus and chips and some wine for mama. We went back to the room to relax before dinner. And then we went down to the banquet.

4. You can't get a kosher meal in Indiana. When I signed up for the Conference, I had to pay a Conference Fee, fees for each session of Kids Camp, a fee for the Compendium (which I got in electronic form), and fees for each meal at the Saturday Evening Awards Banquet. When signing up for the banquet, there were many options: Adult, Child, Vegetarian, Gluten Free, Kosher. Yes, Kosher, for Adult and for Child. So I signed up.

We got into the banquet about 7:10, and it was already full. We waited with a nice family from Long Island and a mother and two kids from New Mexico until they could open another table for us (there were several Reserved tables that were still empty). We put our meal tickets on the table. We told the wait staff what our meal orders were (the LI family had ordered some vegetarian meals). And we waited.

I must have told the waitress 7 times "KOSHER meals". At 8:00, she took the tickets off the table and brought them into the kitchen, then came back and said "They are going to make those now." At 7:15, the manager came over and said "we've run out of kosher meals. The chef wants to know if he can make you a kosher-style meal." NO.

So we ended up with vegetarian, and since I didn't trust that they had also made Sofia's gluten free, I got the kids' meal of pasta (I could not tell if it was GF or not) and she got the adult meal of veggies and beans. But it was already 8:30 and she was ready for bed.

So we left, before the dance even began. Sigh.

But I am glad I went. Glad to meet new friends and see old friends. And glad to be home :)



2 comments:

Theresa Morgan-LaRosa said...

Francine – You know how much I enjoy your willingness to share without judgment. For this alone I cherish you, the fact that you are able to tackle so much is truly inspiring (travel, activities and balancing unique dietary needs)

1. Sofia is just not all that social. – So while Saphy & Sage are not DS they have similar struggles and behaviors. Sage is not social and Saphy is hyper social. Although she struggles with female relationships due to all of the non-verbal cues that occur with girls. She is able to play much better with boys as there are no clicks or non-verbal cues to navigate and they are more active players.
2. Inspiration Porn and Militant Inclusion – I am with you on the inclusion, while I believe it has a place. My point of view is that teachers and schools do not have a level of competence in kids with challenges AT ALL. The kids had summer school at a school in Denver that specifically for kids with learning challenges. The amount of grow they experienced was astronomical!
Having been in multiple IEPs evaluation etc with both kids starting prior to preschool, it shows me when the correct teaching method is applied to the student in an environment that is not just humoring them. They are able to acquire and applying new skills. Of course this school they attended is $19k a year. Our education system is woefully inadequate with their approach and execution in educating all children let alone kids with learning/social challenges.
We need to be able to pay for the services and support our kids need. We need a system for access and networking that is not completely dependent on the resources/education of families. This is a no win scenario for a multitude of reasons.
3. Puberty is Gonna Happen: I have some books (American girls hygiene and another one specifically around getting your period). Let me know I can send them out to you. As books are definitely not Saphy’s things. We have read them to get the content, but they are just on the shelf now.
Also Saphy struggles with sleep and while the weighted blanket, exercise and warm milk help. It has been since she has been 12 since she will sleep in, only due to her stay up later. That isn’t the best trade off although it seems to be more harmonious with our family. I also use Bach’s Rescue Remedy with her. It is a herbal tincture and I have found it to work really well (she hates it of course). The cool thing is I can use the spray on her skin and it works just as well, because she is very willful and that can get cantankerous in a hurry.
Keep on life hacking. Where there is a will, there is a way.

Becca said...

Lemme just say that Samantha was TOTALLY grumpy all weekend, too. Completely uncharacteristically rude and grumpy. That photo at the top, taken *just* when we arrived, was probably one of the only smiles we got out of her all weekend. Ugh. Sofia was not alone. The minute we got home, though, she was back to her cheery, bouncy self. Go figure.

Stinks about the lack of kosher meals! Sorry that happened. :-(