A’Kos Goes to Disney, Part Two: The Road There

I just left everybody hanging on our road trip, didn’t I? Life gets in the way sometimes, but I will get the whole trip posted eventually.  Here’s part two:

We’ve made road trips by camping as a family before, but that was many years ago. We’ve camped more recently as a family using a popup camper, but not our own camper. This was our first long trip with A’Kos, our first trip with our new popup, and our first long vacation in many years. Essentially, it was a shakedown cruise rolled into the real thing.

Our first day was set to be 8 hours of driving: 6 to get to the nearest Chuy’s, plus a little less than 2 more to our campground. We got up early, packed as a team, and hit the road at 9:30.

We got to Chuy’s at 7:00pm.

This became the theme of our whole trip. We hit our first traffic jam just south of Toledo, only two hours from home. The kids enjoyed the pretty mosque we got to stare at, but it didn’t outweigh the standstill traffic.

We hit traffic in Dayton. We hit traffic in Cincinnati. We hit traffic in Lexington. We hit traffic in Chattanooga. We hit traffic in Atlanta. We drove pretty hard, keeping steps to a minimum, eating lunch in the van, constantly trying to regain ground lost to traffic jams.

This is an exhausting way to travel, but there is no way around it when you have a deadline.

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We got to Chuy’s in time for dinner. If you are from the Austin, Texas, area, you know exactly what I’m talking about. If not, it is hard to explain, but I’ll try. Chuy’s is a TexMex restaurant founded in Austin in the early 80’s. For most of the next twenty years, there were only a handful of locations, mostly in Austin. The food is very much the epitome of TexMex, food that is near and dear to the heart of any Texan: chips and queso, margaritas, burritos, handmade tortillas, soft and fluffy sopapillas, all of it just about the best of its kind to be found anywhere. This combines with a funky, eclectic atmosphere that is pure Austin weirdness: ceilings covered in hubcaps, strange artwork and pictures of dogs on the walls, shrines to Elvis Presley, cheap 50’s-style tables and chairs.

Dinner wait lines at Chuy’s have always been over an hour at peak dinner time in Austin. When I was a kid, we would drive the 30 miles into town on Sundays after church, eat lunch at Chuy’s #2, then hit Sam’s before heading back home. It was a tradition, one that I sorely missed when I moved out of state. I have been watching as Chuy’s has expanded across the country in the past five or ten years, but the closest location to our home is still six hours away. It’s been several years since I last went to Texas and got to eat some Chuy’s. This visit was everything I’ve been waiting for.

Camping and the rest of our trip? Not so much. We rolled in both nights after dark. We forgot that you have to pull up the stove and sink in order to have power inside. We forgot to buy and bring a water hose. We forgot a can opener. We lost all of the milk we tried to bring along to spoilage. We didn’t pack quite enough bedding for everyone. We forgot measuring cups. We got caught in a hurricane-strength downpour not once but twice, rain and wind strong enough to get into our main storage bin and soak all our groceries. We spent our second night in the gnat capital of the world (no kidding, there was even a sign at the front desk talking about the gnats). We would roll out in the morning with storage bins unlatched, steps still out, children still needing bathrooms. We seemed to be sharing I-75 with the entire east coast, and we had to pass one army munitions caravan three times before we finally pulled ahead of them. Our second day of driving turned from six hours into ten.

We got there, though. I had some help from my new apprentice drivers, Brenden and Tamara. Tamara earned her rush hour creds in Atlanta, and Brenden discovered just how annoying it was to be on the receiving end of seat back kicking. We rolled in through the daily Florida afternoon showers, and were greeted in our clean condo by towel swans.

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Our incentive for getting in early enough on Saturday was a visit to Disney Quest, a five-story arcade where all the games are free. This was definitely an attraction high on the must-see list for the kids, and they thoroughly enjoyed it. Kender didn’t do much, since it was overwhelmingly noisy, so he and Brian spent most of the evening hanging out with milkshakes in the food floor.  The rest of the kids had a blast, running from floor to floor.  There were bumper cars with cannons, a build-your-own roller coaster, whitewater rafting, 3-D pirate battles, and more, with tons and tons of arcade games on every floor, all coin-free.

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A great week was still to come.

A’Kos Goes to Disney, Part One: The Planning

We’ve had a timeshare since before we had kids. I grew up in a traveling timeshare family and really liked it as a kid, so I pushed for the some experience for our own family. When we had triplets, and then three more kids, we constantly outgrew the units we owned, so we never used it as much as we had hoped. A couple of years ago, though, we were finally able to acquire a week in Orlando in a unit big enough for everybody, and the countdown began. This past Christmas, we announced to the kids that the time had come, and this year we would take them to Disney.

Everybody except Kender was excited, and more than okay with the saving we intended to do leading up to the trip. Kender never really paid much attention. He doesn’t watch TV or movies much, so the characters meant nothing. He also hasn’t done rides very often anywhere. As we got within a week or so of leaving, with planning and packing going on full time, he realized we were going on a trip, but that was about it.

One happy thing happened shortly before we left: Kender finally started saying things like his name and age, his dog’s name, even his parents’ names. This is a huge milestone we’ve been waiting for years to hear!!

Getting to Disney was the first obstacle. A place to stay in Orlando we had. How to get there? Flying is out, partly because of expense (Have you ever priced plane tickets for a family of eight??) and partly for political reasons. We needed to plan for at least three days travel time each way. We put planning this part off for way too long, until we happened upon a used popup trailer for sale that would sleep everybody. Problem solved: we’ll camp! Cheap, and we felt comfortable camping after borrowing a trailer from a friend for a couple of trips.

Planning our time at Disney was another step in preparation. I’m a big planner, especially with such a big family, so when a friend told me about http://touringplans.com I was in planner heaven. These folks have spent years collecting data on the Disney Parks, and you can use their computer and database to plan optimal trips through the parks based on what you want to see and do, how fast you walk, fastpass times, and predicted line times at different times of day and year. They even have an app you can use to reoptimize your plan during your visit.

Armed with our camper, our touring plans, and our A’Kos, we felt we were up to the challenge of taking our large family to the ultimate family destination.

You have triplets???

I can completely sympathize with the mom in this story. These days, I don’t have to tell anybody that I have triplets. If I mention it, it’s because I am at that moment prepared to discuss them, to answer questions and generally engage in conversation about them. When they were babies, though, it was never optional.

I took them everywhere, three babies all lined up in their triple stroller. You couldn’t miss them. They were obviously the same age. A neon sign could not be more obvious.

Having the triplets was not the first time I was in the presence of a neon sign like that. I am well aware that a blind person walking with a mobility cane attracts the same amount of attention, the ogling and the stares and the heads turning to follow us as we pass. Nor was it the last; Kender and A’Kos attract just as much attention.

The difference comes in how people treated us. With disabilities, people stare, but they generally don’t approach. It’s rude to talk about somebody’s blindness, their cane. People stare and then try to pretend they weren’t, and unless they are interacting with us for another reason, they leave us alone.

Not so when you have multiples. People will come up and admire them, touch them, and ask all kinds of questions. They get into personal issues that would never otherwise come up in conversation with a stranger, details about my health and sex life. They don’t ask if I want to talk about these things. My very existence in public was assumed to be permission enough.

Most of the time, I handled this okay. I broke down in tears once when a woman commented on how I must have so much help, because in reality I had none, and she actually enrolled me in her own church’s program for new mothers, bringing us food and cleaning my house for a while. (I still want to pay that forward someday!) But mostly, I smiled and answered questions.

Until one day at the mall. I was having a hard time that week, and I decided to go walk around the mall, to just do nothing and window shop for a while. A woman in a wheelchair came up to me and started asking those personal questions, when I was in no condition emotionally to interact with people, and I just snapped. I starting throwing the questions back at her: Why are you in a wheelchair? How do you manage it? Does it even bother you?

Rude as hell. And she was very offended.

What was the difference, really? And I said I was upset, and I was not in the mood to talk. What did I need to do, hang a sign on the stroller? Like the giant “Don’t pet me!” patches people put on their service dogs. She still was offended.

For some reason today I was thinking about that day in the mall, and then the story about the twin mom and her signs and the backlash she got showed up in my news feed.

I get it. I understand. I sympathize. I was there.

Meltdowns

I’ve been saving up blog posts for a bit, making note of things I want to say but not finding the time to write the posts. This one caught me at just the right time, though.

This video recently came across my feed. It shows an adult woman having a meltdown, and her service dog doing his job of disrupting and calming her.

Normally, we think of meltdowns in terms of children, especially autistic or ADHD children. We think about how they look like tantrums and how to convince bystanders that they are not just the result of bad parenting. We think about what causes them, fatigue and overstimulation and pain and diet, and we work to modify the environment as much as possible. We have our service dogs for calming and disruption, and as parents we are always on the lookout in new places for where we can safely take our child when the next meltdown hits.

How many of parents fully realize that these meltdowns might not be something their children outgrow? I know a few spectrum children personally who show no signs of leaving meltdowns behind even as they approach 21 and beyond. How many of us think about how the world is going to deal with our adult children when they meltdown in public?

How many adults like me, who skated under the radar as children, realize what is going on when they finally hit their breaking point as adults?

It’s not a pretty picture. Autistic adults have been shot, tazed, and otherwise assaulted as if they were dangerous criminals when all they needed was a temporary reprieve from the assault on their senses or emotions. People who are already self-harming in a meltdown can lash out instead of calming if they are approached aggressively, and when you’re talking 250-lb man instead of 50-lb child, things can get out of control in the blink of an eye.

I was lucky. My first adult, “public” meltdown resulted in a security escort and a lifetime ban on entering the medical building where it happened. But I didn’t get arrested, and since then I’ve learned to just shut down when people are around, to wait until I can run and hide before letting it out. I focus on my kids, which gives me something that needs doing, that keeps me from having to look at anybody else, that keeps others from talking to me.

What if that office had arrested me instead of giving me a room to let it out and then letting me leave?

What about those who can’t hold it in until they can hide, who don’t have an understanding companion or an ever-needful set of children?

I know I’ve done my share of railing against phony service dogs. But not every little dog accompanying sighted adults is a phony. Some of them are there do to exactly what this dog is doing, to help calm and protect their owner until they are in control of themselves again. And you may never ever ever see these dogs actually do their job in public. Often just the presence of the dog is enough to help the person hold it together long enough to flee.

And if, one day, that seemingly-normal adult finally reaches their breaking point in public, that dog and its presence could be the difference between an escort and a death.

Kender and School

It feels weird to be talking about Kender going to school.  We’ve been homeschoolers for so long.  It’s all about what’s best for the kids, though.  In Kender’s case, right now, a group learning environment seems like the best choice.

Although Kender is still making lots of progress, he still resists being directed and guided in one-on-one play and learning.  This is part of what we are working on in his therapy sessions, along with other communication skills like talking about what hurts or what happened.  This resistance, though, makes it very difficult for me to teach him at home right now.  He doesn’t tolerate sitting down and coloring, playing games, doing calendar time, or any of the other activities I’ve usually done with my kids for preschool and kindergarten.

What Kender has shown that he can do, though, is to learn by listening.  He is also beginning to show an interest in playing alongside others.  These things are what make a group environment such a good idea for him right now.  He can participate or not participate in class activities, as he feels comfortable, but he will still learn just by being in the room, by listening and watching what the other kids do.

Kindergarten and preschool are also a great time for inclusion.  Kids in these classes have not yet learned about bullying.  They haven’t learned how to be really mean.  Instead, they are still curious and inquisitive, helpful and caring.  I wouldn’t want Kender to have to go through elementary school.  But kindergarten will be perfect.  He can learn about social skills and be included without being bullied.

The trick: Finding a preschool or kindergarten willing to accept a 7-year-old and treat him like one of the 4-year-olds.  Government school was right out.  Quite aside from my complete lack of faith in the school district’s ability and willingness to accommodate Kender’s special needs for blindness and autism, I’m fairly certain that they would want to place him in first or second grade because of his age, then pull him out for resource room activities and special tutoring.  This would completely eliminate the benefits of being in a group.  My next thought was that Montessori, with their philosophy of child-led learning and multi-age classrooms, would be a great fit.  I called four different schools in our area, but none of them would take Kender; they couldn’t deal with blindness and autism, and they didn’t want a 7-year-old who hadn’t already been in Montessori for many years, regardless of his developmental level.  The preschool program at our therapy center didn’t want him because he was about to age out, again disregarding his developmental level.

I had given up…when I remembered the daycare at Jackson, where Brian works.  Sure enough, they have programs all the way through first grade, and they had a few openings in their kindergarten classes.  And they were willing to take Kender!

So today we made a visit to the classroom to see how Kender would do.

It may have looked very different to people who don’t know Kender.  But to me it looked like a great success, and made me excited to see how this fall goes.

Kender spent most of the first hour lying on A’Kos.  The room was close and crowded, and the other kids were constantly hovering around, wanting to pet A’Kos, asking questions about Kender.  Near the end of free play inside, Kender finally got up and walked around a bit, exploring around the tables and chairs.  He even helped put away a few things as the class got ready to go outside.  Outside, he was again quiet for a long time, huddling on the play structure and listening.  But eventually he got up and started exploring.  He rode on two different trikes, carried a hockey stick around and banged on the ground, and played with an empty bucket.  He interacted with one of the teachers a bit, accepted redirection and occasionally responded to questions.  When outside time was over, he helped pick up a little, and he came to wait in line with A’Kos before going inside with the class.

Anybody who knows Kender knows that was a great success!

We left at that point, with the other kids sitting down to lunch.  On the way out, I spoke with the director a bit.  They seemed very comfortable with allowing the classroom teachers to handle A’Kos (after some training from us, of course), and also with allowing me to add Braille to the classroom and train the teachers a bit on how to teach a blind child.  All-in-all, they were hugely accommodating.

Later, Kender told his dad and his sisters about his day.  He said, “I went to school.  I went to kindergarten at school.  I played with blocks.  There were bubbles.”  He said he had fun.

I haven’t asked how much this is going to cost yet, but we’ll find a way to cover it.  I think this is going to be great for Kender!