Plinth Blog Special Needs Parenting

13Aug/174

Having a Child with Down Syndrome, Part CXXX: Comic Con Success

One day recently when I was in my local Comic Book Store, Modern Myths, I saw a flyer for Boston Comic Con. I knew that E and Stuart would be out of town on that week, but I thought it might be a good end of week event for Alice and me. I bought tickets and started to make plans for how to best manage this with Alice. There's a lot to unpack here, so bear with me.

First, if you're looking for how to do this with your child with disabilities, then your best guide is is how well you know your child. Alice is a very social child with a deep love of fantasy and movies. She also has only so much stamina and can get easily overwhelmed from excess stimuli and can have difficulty overriding her desire to touch things and people. A week before the con, I talked to her about what we were going to do and when and what we would see there. A day before, I reminded her of it and we talked about what we would be likely to see: artists, their pictures, people in costumes, sessions and so on. We talked about how it was OK to look, but if we wanted to take pictures we had to ask. We practiced a simple script for asking politely. We talked about not walking off. We talked about listening. We talked about using words. We talked about that the event was going to be crowded and noisy.

The next morning, we got up and had breakfast and got ready to go. First parenting trick, I took from E, have sharpie, will travel:

I wrote my phone number on her arm just in case we got separated. Next, packing. Con food can be problematic and expensive, so I packed a snack, a bottle of water, and some gluten-free hamburger buns. Alice decided that she wanted to bring some magazines with her in the car, so she grabbed a stack and we headed off. In the car, we reiterated the talk we had the night before. Alice remembered a lot of it.

When we got there, we talked about lines and waiting, and patience. We looked at the schedule and talked about what we would do. I wanted to meet with some of the artists, Alice wanted to go to a cosplay makeup session, and we had a photo op scheduled around midday. I titrated the snacks into Alice so she would make it after the photo op and we enjoyed seeing all the people in costumes.

Alice was terrific. She told me when she wanted to look at something or someone in costume. When she wanted a picture, she asked and the cosplayers were very kind in that regard. Most of them were very taken with her like Aquaman:

He gave her his trident to hold. And then there was Thor:

This man was huge - probably 6'5" and we took a couple pictures and when I suggested that Alice might be worthy to wield Mjolnir, he acted completely surprised that she was.

We scheduled down time. We went to some sessions about makeup and cosplay body image. Alice listened, but probably didn't get much out of them other than the opportunity to be in a much quieter room and to sit for a while and quite honestly, that's not nothing.

We also did a meet and greet with Felicia Day. I explained what would happen. I showed Alice pictures of her. Alice said, "She's so pretty and she's smart and she likes to wear costumes."  Felicia Day, who is an actress, runs Geek and Sundry, which is an online presence for entertainment productions for and by geeks. One thing that stands out in her organization is the large number of women in prominent roles. While I'm sure I don't know all the detail, what I see is someone who actively opens doors for women who are more likely than not to have had doors shut. This is a great thing.

When it was our turn, Alice ran in and went for a hug. I stepped to the other side of her and expressed my thanks and the reasoning that when she opens doors for other women, she is likely indirectly opening doors for people like Alice. Think about it, if someone creates an opportunity for you where culturally and historically you've had them taken away, wouldn't you be more likely to pass that on? Alice started to bolt off, but Ms. Day said, "Oh my God! That's so nice!" as I was catching up with Alice. As I caught her, I turned around Ms. Day was setting up for the next group, but she caught my eye and we exchanged brief smiles of, I think understanding.

(Mental note, Steve, when you put your arm behind your back it makes your stomach pooch out)

As the day went into afternoon, Alice was clearly tired and I suggested we go. She agreed and we started our long walk back to the car. We stopped for water and looking ahead at the distance (it was about 1/4 mile), I set landmarks for places where we could stop. At one point Alice said, "I need to take a break. I sit down and drink water and enjoy the air." She told me one foot was bothering her, I took off her shoe, orthotic and sock. The sock had bunched up a little bit, but her foot looked pretty good, so I had her put her sock back on and after some water, we moved on.

During the day, I applied near-constant specific praise to Alice: good using words, good big voice, good following directions, and so on. Lots of high-fives and fist bumps. Lots of hugs. I let her pick where we went and what we looked at. I gave her a fair amount of leeway while still setting appropriate bounds.

I don't know your child, but you do. With that knowledge, planning, consideration and understanding you can have a successful trip.

Filed under: Uncategorized 4 Comments
10Aug/171

Having a Child with Down Syndrome, Part CXXIX: Tiered Rewards

This week, E and Stuart are away on a vacation visiting the Florida grandparents. We did this because as Alice and Stuart get older, what they want to do and what they can do has become more divergent. In addition, we know that Stuart can often get the short end of the stick because of his sister's disabilities. To address that, some time with his grandparents without his sister will make a difference. Alice and I are together and we needed a way to give Alice some more incentive to be better behaved. I won't say well-behaved because quite honestly, her baseline is pretty good.

These days, Alice very often thinks with her stomach. So for her a big reward is going to a restaurant. So we picked Friday for that as a possible reward. The problem is that you don't want something like that to be a go/no go situation. That makes it high stakes and that ends up being hard on everyone. E has used tiered rewards in the past and that has worked well. I'm doing a variant on that. I made a set of cards for Alice, each acting as a rubric for the day:

Her 6 goals per day are:

  1. Not yours? No touch.
  2. No baby TV
  3. Shower - no playing
  4. No bickering
  5. No sneaking
  6. Follow directions

Now, I don't really like this list. Typically you want these goals to be written in the positive not a negative, but I was tired and Alice is OK with it. Most of these goals are a challenge for her, but she's capable of all of them. No sneaking sounds odd, but it's not. It means no sneaking food and no sneaking downstairs to watch TV. I've tiered it so that she needs to get at least 4 checks on a card. If she does, then I put a check on our menu list. If she gets 4 checks, on Friday she can pick a restaurant and we'll go eat dinner there. If she gets 3 checks, I'll pick the restaurant. If she gets 2 checks, we get take out. If she gets 1 or fewer, just a regular meal at home.

If you do this with your kids, you should expect that either the first day or the second day will be a total bust. I don't know why this is. Maybe on day one, the kids are just acting on novelty and on day two they decide to screw the boundary just to make sure it's really there and then when they see that it's their choice to make things succeed, they turn around.

Day 1 was great. Day 2? Not so much. In fact, Alice botched almost all of them. When we finished the review, and she was very honest about it, she said "It's OK, I do better tomorrow." And honestly, this was one of the most wonderful things she could say. She didn't dwell on not getting the checks, she turned to what she needed to do in the future. A younger Alice would have tried to check the boxes when I wasn't looking.

Of course, she started today by trying to sneak TV while I was showering, but she owned up to it and we went over the rules again. We'll see how it turns out.

Epilogue

Reward earned and enjoyed.

Filed under: Uncategorized 1 Comment
7Aug/171

A Very Quick Parenting Tidbit

When I was a kid, we had a copy of the Whole Earth Catalog in the bathroom, which I paged through with eagerness. There was one section about parenting and there was an excerpt from a parenting book that talked about avoiding blame or questioning for blame and instead to speak to consequences. The example in the excerpt was instead of saying "who left out the milk?" (which encourages blame) to instead say, "if you leave the milk out, it will go bad." (which encourages responsibility). There were before/after cartoons of kids finger pointing (blame) and kids rushing to put the milk away (responsibility).

I've been at this for more than a decade.

"Wet towels left on the floor get stinky."

"Leaving lights on wastes power."

"Sitting that way will break the chair."

And the end result in this house is: stinky towels, lights I end up turning off, and broken chairs.

I don't know whose kids were in the cartoon, but they clearly care a hell of lot more than mine.

Maybe it will pay off in the future, but in the meantime I think both approaches are horseshit for actual results.

Filed under: Uncategorized 1 Comment
6Aug/170

Having a Child with Down Syndrome, Part CXXVIII: Building Appropriate Independence

Independence is a scary thing with Alice. Ideally we'd like her to be able to do as much as she can on her own, but the problem is that she doesn't always have particularly good judgement. For example, if she wakes up at 4 in the morning, she thinks it's a good idea to get up, grab some ice cream and then go watch Pee Wee's Play House. Independent? Yes. Wise? No.

Alice has been on a cereal kick recently (gluten free rice chex). E started teaching her to do most of this on her own. She puts out a bowl of dry cereal, a cup of milk, a cutting board, a banana, a knife and a spoon. At this point, Alice grabs her own napkin, sits down, puts milk on the cereal, peels the banana, cuts it up, puts it on the cereal and eats it. This is totally awesome and is a good life skill. Pouring her own milk into the glass? We're not there yet. Pour her own cereal, not quite.

So when, at 6:00AM this morning, I heard the cupboard open, I interrupted my conversation with E and darted downstairs. Alice had gotten out the cereal and a bowl and was getting ready to start pouring. I interrupted her and got her to  a point where she could take over. Phew. Dodged that.

Today we did our usual shopping regime, but when I sat down to make the list with Alice, I had her pick some of the meals and think about what we would need. At appropriate times when I asked her a question she thought about it and replied, "I don't know." This is really hard for her since over the years the pattern has been "an adult asks you a question then you answer it no matter what." Saying 'I don't know' is new. After picking meals, we talked about what we needed to get for those meals and she typed them in. While in the store, she was naturally picking out what we should get next and was making good choices most of the time. When we got about 2/3 of the way through, she was listing off everything remaining on the list. Excellent process!

Our days are not without issues. Before we headed out she went on a crying jag and was lying on the floor weeping. For no apparent reason. I led her out of the house, tears running her down her face and got her in the car while her personal storm passed. On the drive to the store, she told me "I'm not crying any more daddy. I just happy." I told her that it was OK to be sad and that she could be sad without crying if she wanted to. I've also gotten my share of bald-faced lies followed by "but mommy told you".

And while I don't know if the judgement will ever get here, I'm certainly grateful for today's oasis of excellent behavior.

Filed under: Uncategorized No Comments