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!

Transformation and Perspective

One day last week, while hiding in the coat closet, Kender discovered our old vacuum cleaner.  It’s been hiding there for many years, gathering coats instead of dust.  He decided this was going to be his new toy, and he pulled it out, hauled it to the hallway, and plugged it in.  Our first response was to take it away and try to hide it in the basement.  That did no good.  Every day, Kender goes down and finds wherever we’ve hidden the vacuum, pulls it out, and tries to haul it up the stairs, spilling the cord behind him.  Step by step, he heaves and tugs and eventually lugs the hefty machine to the top of the stairs.

Usually somebody stops him somewhere in this process, tells him no, and returns the vacuum cleaner to hiding.  Today, though, he made it all the way to the living room and found an outlet to plug it in.  I came out of the shower to find him happily sitting on the exercise bike, turning the vacuum on and off.

So I let him have it.  A couple of times today I went over and tried to show him how to vacuum properly, putting the beater bar against the floor and moving it back and forth, picking up extension cords and large pieces of trash that might be in its way.  Who knows? I thought, we could end up with a cleaner house.  He went along for a little bit, but always went back to just holding the handle sideways, finger on the trigger.

Did I mention that it is an incredibly LOUD vacuum?  This did nothing for the terrible headache that left me whimpering for a chunk of today, in pain the whole day.  I didn’t want to do anything today, nothing at all.  But I would settle for knitting in front of the TV.  So I turned that into an opportunity, challenged the kids to finish morning chores, and rented a documentary for us to watch.  Obstacle successfully converted!

Watching TV did require getting Kender away from the vacuum.  This meant our movie was continually punctuated by alternating screeching and very quiet and polite request to vacuum more.  We got a brief respite from that when Kender found the blueberries in the fridge.  As soon as the movie was over, Kender was back at the vacuum, happily making lots of non-screaming noise.

While dinner was cooking, we tried to pry Kender away from the vacuum again.  I got out a loop loom that came with our last Oak Meadow shipment and never got used, wondering if I could interest Kender in stretching the loops across the frame.  I netted a Jarod instead, while Kender huddled in a chair and fussed.  Once Jarod was off and running with the loom, I made Kender a deal: First we would read a book, then he could vacuum.  He screamed about that a few times, but then he did go get a book to read.  He screamed when I sat down to read it, but then he listened to the rest of the story.

And then he got to go vacuum.  He didn’t even want to come back into the dining room for dinner, and once we did get him to sit down, he had to take a couple of vacuuming breaks during the meal.  He’d get up and run into the living room, we’d hear the vacuum turn on for a few seconds, then he’d be back at the table, saying, “Thank you, Dad, this is a good dinner.”

When we announced bedtime, Kender went with a minimum of fussing, only asking me to please put the vacuum away for him.

I got to the end of the day feeling a little useless because of the headache and accompanying listlessness, but what did I really accomplish today? I took a shower and got dressed, I got everybody to watch some educational TV that actually sparked some good discussions, I used one of Kender’s obsessions to get some reading into him, I got Jarod started on a new craft, I got new tires for the van, and I saw Brenden’s last wrestling match of the season.  Not bad, really.

The Miracle of Birth

There was always that moment after having a new baby when I first took that baby out in public, a few days after birth or coming home.  Whether it was one baby or three, whether it was the first or the sixth, those moments share some things.  I was always a wreck.  Trying to cope with suddenly having multiple babies at home, recovering from a c-section, or just beat up and feeling like I was swimming in blood, I was always tired.  We might go to Wal-Mart or Sams or the Babies-R-Us store, or maybe to Brian’s office to show off.  Wherever we went, I always felt like I had a neon arrow pointing down at my head from above as I walked through crowds.  I had a miracle strapped to my chest or in this stroller.  A baby! A new baby! They still smelled sweet, and they made little grunting and cooing sounds in my sling.  A whole new person, right here, the existence of the baby outside my body became an enormous thing that filled my whole experience.  It was huge, it was magical, how was it that I could walk through the crowd and nobody noticed anything?  It’s a newborn baby!  I grew this baby, and now it’s here and we can touch it and cuddle it and talk to it.

Sometimes I miss breeding.

The Kender Report

It’s been a while, so I figured it was past time for another post on Kender.  October was a busy time for us, with so many birthdays to celebrate.  A’Kos also has made some new friends.  He is just as happy to calm my friend’s autistic children as he is to work with Kender.  He will lie on top of Rebecca when she’s feeling down, and he will let Thomas lie on him when he needs a nap…although Thomas doesn’t leave much room for Kender when that happens!

Probably the biggest thing that has happened in the past month is that Kender has started receiving therapy.  We found the Children’s Therapy Corner in late September, and it was like the perfect answer to what I was seeking.  They are not connected with the schools, they file with our insurance, and they provide speech therapy, occupational therapy, and even music therapy.

As soon as I found them I called to get Kender in, and he started therapy on Halloween.  Since our insurance allows 60 visits per year, none of which he has used, he’s going three times a week until the end of the year, giving him a good head start with it.  Kender is getting speech therapy and occupational therapy, both therapists working together so that we only get billed for one visit for both services.

Speech therapy is working to improve Kender’s interactive communication.  In the evaluation, he was only able to maintain 2-3 circles of communication at a time.  They want him to be up to at least 20-30.  Not only will this make him better able to play with other kids and otherwise interact with the world, it will make it much easier for us to teach him more advanced skills as he moves toward preschool and kindergarten.

Occupational therapy is focused on changing Kender’s posture and getting those fingers out of his mouth.  Kender has a tendency to lie down when he wants to play with something, to curl into a ball and hide his face, and to lean on furniture when he is standing.  The goal is to get him to sit upright to play with things, as well as forcing him to use both hands together and to cross his midline when reaching.  The midline issue is something that I hadn’t even realized was a problem until the evaluation and results.  Mostly I had blamed it on having his fingers in him mouth too much, and that may be part of it but it could also be a symptom.

The music therapist came in for one session last week to observe Kender.  She sang a song and played a drum with him for a bit, and everybody was very impressed to see how engaged Kender was when she was there.  Since he has always loved to sing and showed a great talent for remembering and reproducing music, we thought music would be a good adjunct to his therapy.  So even though our insurance doesn’t cover it, we’re going to find a way to work her in as well.

One of the new toys that Kender has discovered at the therapy center is their lycra swing.  I call it the body bag swing, which I think annoys the therapists a bit, but come on, just look at it:

Kender in the body bag swingThat is definitely a body bag!  The swing completely encases Kender, and the strong, stretchy Lycra gives him a whole-body hug as he swings or spins.  He’s been spending 5-10 minutes in this swing at the beginning of every session.  The therapists say it helps to get him more alert and engaged.  Since I’m already planning to build Kender (and all of his siblings!) a loft bed, I may just get something like this to hang underneath it so Kender can have some swing sling action at home.

I’m really excited about getting these therapy services going.  It makes the roundtable meeting feel much less urgent, as I want to see where we are after a couple of months of therapy first.  Also, the Center folks said they would be happy to attend such a roundtable when I get it put together, and might even be able to provide a conference room for us!

That’s it for today’s Kender Report.  Come back later to find out whether A’Kos eats the Thanksgiving turkey, or whether we can finally get Santa pictures with Kender!

 

A’Kos Visits the Renaissance

The Michigan Renaissance Festival is open for only one Friday each year. It is School Day, an opportunity for area schools to organize field trips in the name of history. Tickets are half price for groups that purchase in bulk ahead of time, coupon books provide a little food discount, and the actors tone down the bawdiness a little to keep it more child-friendly.

For the past few years I’ve taken advantage of this to head up a Lansing Homeschoolers field trip, bringing the price within reason for our large family. The kids (and I!) look forward to this trip all year. Allowance and spending money is squirreled away, costumes are put together, and attack plans are often made to strategize all the things to do and eat.

For me, the attraction lies in people-watching, a day free from chores and school, and a rare purchase of something difficult to find elsewhere. Sometimes I eyeball the clothing shops for ideas of things I could make for myself. Otherwise, I generally drift with Jarod and Kender, mostly happy to do what they want. This year, we had A’Kos along for the ride, which put the finishing touch on my day off, as the frustrations of Kender screaming, fussing, running, etc., were virtually nonexistent.

Most of the kids run off on their own, in twos and threes. The girls had a couple of friends along, and they spent the day getting pretty and buying clothes.

Liam also had a friend along. They bought weapons, ate constantly, and delighted in sending each other and others to jail.

A rare shot of Kender showing his face!

A rare shot of Kender showing his face!

Kender was very good about wearing his tethering vest today, which was a huge relief since this was one of the main places I needed it. Even when I took it off so he could play on the playground, he calmly let me put it back on when it was time to move on.

The first thing I did after the playground was head to Son of Sandler for some boots. I have gotten down to having only my summer Unshoes and my super heavy snow boots as the sum total of my intact shoes. I have gotten several recommendations for Son of Sandler’s shoes and decided to make the investment in some shoes that would cover the gap. With the rave reviews and the lifetime guarantee, I hope the investment will pay off. I ended up with some ankle boots, since they were near the bottom of the

My new warm shoes.

My new warm shoes.

price range and had lesser soles. I wore them all day and felt very comfortable in them, so I think they will work out!

Kender laid with A’Kos while Jarod made the acquaintance of a couple of Great Pyrenees in the store. Later, a woman came in with her pet fox on a leash, something I had never seen before. A’Kos was rock solid the whole time, staying with Kender until I was ready to leave.

My favorite job for our service dog: a place for Kender to hang out while I do something.

My favorite job for our service dog: a place for Kender to hang out while I do something.

At lunch, A’Kos stayed with Kender and Jarod so they could sit and eat while I fetched drinks from the huge drinks line. I love how calm and sedate A’Kos is. He doesn’t budge from a down unless Kender or I run off.

Unknown by me, Kender was busy stealing my burger bun!

Unknown by me, Kender was busy stealing my burger bun!

Such good boys

Such good boys

After picking up some smoothies, it was time to catch a set with Tartanic.  While we waited, Jarod got into a shouting contest with the local pickle vendor over who was louder.  This caught the attention of Tartanic’s lead man Adrian, and Jarod was drafted into the band for the whole set, playing a tambourine.

Around 2:30, Kender had finally had enough, and he fell asleep while I was in the privies.  So I left him where he was sent Jarod off with a friend to finish up his activity list.  Kender was quite the spectacle.  Every passerby was cooing and adoring, and quite a few were just walking up and taking pictures, making me regret not having bought business cards for times like this.  I must say I definitely prefer being this kind of spectacle with Kender over the spectacle we presented the past few years of kicking and screaming and running off!

Kender slept for over an hour and a half, and by the time he started waking up everybody else was ready to leave.  Although I was still tired when we got home, I think that is the most relaxed and enjoyable time I have ever had at the Renaissance Festival with Jarod and Kender.  Thank you, A’Kos!

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The Kender Project: A Roundtable IEP

My first children were a set of triplets born at 26 weeks gestation, 14 weeks early.  We went from happy young couple planning to start a family to being thrown straight into the crazy and confusing world of the Neonatal Intensive Care Unit, times three.  Because they were both triplets and micropreemies, we got a lot of freebies, and we also got enrolled in a lot of research studies.  One of these was looking at outcomes from improved communication between medical professionals and families.  As part of this study, we were able to meet with all of the doctors who were caring for the triplets all in one room, every week.  Neonatalogy, cardiology, pulmonology, ophthalmology, everybody met in one conference room.  Each doctor would give a report on how the triplets were doing that week, they would outline their plans for the upcoming week, and we would have a chance to ask questions.  Everybody could hear how all of the pieces of the triplets’ care fit into the whole and get an integrated picture, instead of just dealing with their little pieces.

A couple of weeks ago, I attended a training conference about the concept of a medical home and integrated care.  They invited (paid, actually) me to attend as a parent of a child with a genetic condition, specifically.  We talked about the idea of having one medical professional in charge of a child’s care, one person who would talk to all the other doctors and integrate their practices.  The idea dissolved over the course of the day, though, as it became obvious that we, the parents, were the ones who were doing this work.

I am the only adult in Kender’s life who talks to the ophthalmologist, the family doctor, and the psychiatrist.  As a homeschooler, I am also the only one who orders and pays for adaptive equipment like canes, audio books, and braille.  I am the one who handles his service dog.  I am the one trying to figure out, by myself, how to meet his needs, both medically and educationally.

And I don’t think the two can really be separated.  His blindness affects how the psychiatrist evaluates him, and it affects the ways in which we meet his educational needs.  His autism affects how he presents his blindness to the optometrist and the ophthalmologist, and it affects what kinds of adaptive equipment and skills he can use.  Everything affects everything else.  His eye condition led to chronic pain issues, which slowed down his development, and the autism kept him from being able to communicate changes in his vision or pain issues.  Even his dental needs affect his autism and his education, because he was in pain from tooth problems that developed because his autism affected his self-care skills, and his autism also prevented him from telling us there was a problem.  And round and round it goes.

Something about that conference sparked an idea:  What if I could set up with Kender the kind of roundtable conference that we had with the triplets in NICU?  What if I could get an optometrist or ophthalmologist or both, a Teacher for the Visually Impaired (TVI), a psychiatrist who has done a recent developmental evaluation on Kender, a teacher from either a Montessori or Waldorf school (preferable with experience in autism or blindness), A’Kos’ trainers from 4 Paws, even an occupational therapist (OT)?  What if I could get all of these professionals to sit down with me in one room, corporeal or virtual, and talk together about Kender?  What if the ophthalmologist and the psychiatrist could interact directly with the teacher, without the conversation being relayed through me over months and years of scattered appointments?  What if everybody could communicate together, and together we could come up with the best possible strategies for facilitating Kender’s continued growth, development and education?

I thought this was a hugely exciting idea, and I’ve been trying to pursue it for the past couple of weeks.  I’m not having much success, unfortunately.  I’m running into the same walls that I always have.  TVI and OT professionals work for the school districts exclusively and have told me in the past that their contracts forbid them from working privately for somebody.  The Commission for the Blind does not work with children, because that is the school district’s job.  The autism professionals have no experience with blindness.  Most of the professionals, educators, and researchers with experience in the conjunction of blindness and autism are in Texas, at the state School for the Blind there. (No, Michigan doesn’t have one.)  The Montessori and Waldorf teachers don’t want to work outside their schools.  Maybe our ophthalmologist would do it, just for fun, being an inquisitive and research-minded kind of guy; I haven’t asked him yet.  I would pay all of these people, and it would have to be out of my own shallow, bedraggled pockets.  I would do it, for the chance at this roundtable, for the chance to really have a sense of direction with Kender.

I can’t do it alone, though.  I’m hoping to spread the word through some extra channels now, through both the blindness and the autism communities, even through the education communities, to find some folks willing to work with us on this.  I will teleconference, if it comes down to it I will beg, borrow, sell whatever I have to to travel.  I want this to happen.  Kender needs this to happen.  Not just Kender, but the other kids like him whose parents are also lost in the sea of multiple doctors and disciplines.  Even school IEP meetings don’t feature this kind of meeting of the actual doctors who really know about the conditions involved.  I refuse to believe there are no professionals out there interested in this model of care.

So please, share this around, and let’s find some professionals.  I may have a psychiatrist lined up, and I’ll be approaching our ophthalmologist about the idea.  I can talk to the trainers at 4 Paws.  But I also need a TVI and a non-traditional teacher, at a minimum.  If you know anybody willing to work with us on this, please send them my way.