Plinth Blog Special Needs Parenting

27Mar/160

What Does Inclusion Look Like?

Inclusion is in education and in community is not simply being present. It is being allowed to participate to the best of your abilities. It means being able to access things in a meaningful way. It is being appreciated for what you can do and not being made to feel bad about your limitations.

Last night, I went to see Zootopia with Stuart. It is a movie that depicts a culture made up of all kinds of mammals doing their jobs. It's very much like a giant Richard Scarry world.

What's notable is that the culture is built around inclusion.

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This scene that shows a juice shop that has a vertical pneumatic pipe for lifting cups up to giraffe level in addition to a counter.

This is a view of the train which has 3 separate doors for animals of different sizes. Although the small animals could use the full-size door, they have appropriate access to the train.

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Check out the teeny car in a small-sized lane. The driver has access to the road without being at risk from larger vehicles.

And these details are all just that: little bits that are there to give breadth to the world, but are taken totally for granted by the animals in the world, which is how it should be.

Studies have shown that classroom inclusion is beneficial for everyone in the classroom when done well. Unfortunately inclusion isn't always done well and the best predictor for how well inclusion will be implemented is your zip code. If you live in a better neighborhood, the schools will have better inclusion.

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26Mar/160

The Dad Look

Alice and I got back to the car after shopping.

"Alice, would you get in the car please?"

"Seriously?"

I used my +3 stare of You're Pulling This On Me?

Alice muttered very quietly, "he's serious".

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20Mar/160

2016 MDSC Conference Wrap Up

This year, I took Alice with me to the MDSC annual conference in Worcester. Alice hasn't been since she was an infant because the conference doesn't really cater to younger kids, and that's OK. This is the first year that Alice was eligible to attend the teens and adults track and since I think that the MDSC will be playing a larger role in her life in the future, I wanted to get her involved in the conferences as much as possible.

My biggest issue, I think, was that I didn't know what to expect for her nor did I know how to fully prepare her for being with a room full of strangers. Multiple times before we left and before we arrived, I spoke to her in broad terms of what to expect for the day. I knew, even as I was speaking with her, that this was not going to be enough. Maybe I can work with the MDSC to help improve the process for everyone.

At any rate, we checked in - thanks to her experience with ballet, she is an expert at checking in. We walked up to the registration and introduced herself and me to the people working registration and we got my badge. Then we went to the youth table and she checked herself in there too. I brought her to her table, did some introductions and told her that I would be back to check on her later.

Sure enough, just as the first session was ending, Alice saw some parents stopping by and she bolted from the room and I got a call from a volunteer. *sigh* I went to pick her up and we walked around some of the exhibits and I gave her a snack and tried to set her expectations for the next session. I would take her back the junior ballroom (Alice loved that it was a ballroom), and she would be in the next session until lunch and then I would come get her.

Again, as the second session was close to ending (and unfortunately when it was getting to a good part), I got another call. I went over and they had Alice outside the ballroom working the sign-in/sign-out sheet. Fair enough. We walked over to the luncheon and got some great seats.

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The keynote speaker was Tim Harris, who owns Tim's Place. He gave a nice talk about the things he believes are important in life. Alice enjoyed it very much.

After lunch, I took Alice up to meet Tim.

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Alice got a good hug from Tim and I did too because, why not?

After lunch, we walked a bit and Alice signed us up on the mailing list for D.A.D.S. No, really. She picked up the pen and wrote her name and tried to write 'Northampton'. Then she signed me up as 'daddy'.

I gave her the choice of going to the session with me to listen to a bunch of boring medical researchers or going back to the junior ballroom where they were going to have a dance party. Oddly enough, she picked the medical researchers with me. It was indeed horribly boring for her, so I had to employ all means of redirections and distractions until Alice just plain fell asleep on my lap.

A few interesting things that I learned - as an alternative to CPAP, there is an implant which is a hyoglossal nerve stimulator which jiggles your tongue with electricity and makes it protrude, clearing your airway. It's FDA approved for adults and in clinical trials for children. Alice hates her CPAP.

I got some good advance advice about transition planning.

And I heard a very interesting factoid about what is the best predictor of whether or not a child with Down syndrome will be included in a general classroom: zip code. It is wear you live, not your needs or capabilities that determines if you are included. Scary.

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8Mar/160

Having a Child with Down Syndrome, Part XCVII: Growth Spurt Maybe?

Copyright © 2016 Stephen Hawley, all rights reserved.

If you have Down syndrome, you are likely not going to be tall. Women average 4'6" and men average 5'2".  Alice is starting to approach that average, and although my family is generally tall, I don't expect her to be a whole lot taller than that.

Still, we're seeing some evidence that she has a bit of a growth spurt on the horizon.

Alice chunked out a bit last year and I've been trying to monitor Alice's food intake and cut it back just a tiny bit. It's been working, she's thinned out a little bit. It's trick with a gluten free diet because most of the so-called substitutes for common staples are about double the calories.

This past weekend, Alice woke up at 4:00 in the morning and Evie found her in front of the TV with a box of popsicles and a pair of scissors to open up the wrapping (and if that isn't pre-planning, I don't know what is). The past couple meals and snacks, Alice has inhaled everything put in front of her and asked for more. Evie and I have been calling it "Alice eating the entire world." Sunday, she had a decent breakfast and we went to a birthday party and I could not believe how much she ate. I couldn't eat that much. This continued today.

Growth spurt. That's what I'm thinking.

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