Our First Track

Today started out with our first tracking session. Fortunately it had stopped raining, although the ground was sopping wet and the first tracking team accidentally went through a puddle.  We got a handout about tracking procedure and behaviors last night, but it was another thing to see it in action.  I didn’t get very many pictures, and none of A’Kos in action because I was too busy!

First, we put a harness on A’Kos.  Then Brian and Kender start walking off to hide.  Because A’Kos has been trained to track Venus, one of the trainers at 4 Paws, she goes with them, and A’Kos is allowed to watch them walk away.  We hide A’Kos behind a van and distract him as Kender is hidden.  Today Jessa, one of the trainers, handled A’Kos to show me how it is done.  She gets a 16-foot flexi leash out along with a thick leather glove.  (The glove acts as a brake to slow A’Kos down so he doesn’t jerk the leash out of our hands when he hits the end.)  As she hooks the flexi leash and unhooks the regular leash she starts the build up: “Where’s your boy? Where’s your boy? Where’s your boy?” Then she lets him go, paying out the flexi leash through the leather glove. A’Kos makes several circles around us, finally slapping the line taught twice in the general direction of Kender’s trail…and we’re off, running through the sloppy grass, A’Kos making huge bounding strides as the trainer keeps repeating, “Where’s your boy?!” A’Kos never hesitates, around a cone and over a hill and straight for Kender in the trees.  When A’Kos finds Kender, we reward him with a bag of Bil-Jac (his favorite treat) and tons of hugs and praise.

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One of the other dogs watches his girl walk away

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One of the other dogs begins the search for the scent

Over the afternoon, we learn more details about how the tracking works, and we get to hear stories of how tracking has worked for other families.  We’ll be practicing our tracking with Venus and alternating which of us tracks and which of us hides with Kender. By the end of next week, A’Kos should have Kender’s scent down, although blind tracks will be a daily practice task for a long while.  In the meantime, we can practice using, “Where’s your boy?” and taking A’Kos to Kender even if he’s just in the next room.  This conditions the dog to connect that phrase with the act of finding Kender.  Jeremy told us this afternoon about a mom in a training class with a boy named Kenny (I’ll never forget that name now!) who would elope every day, several times a day, straight out the door.  When he did, his mom would shout, “Kenny!!” and go after him…with the dog in tow. After just a few days, Kenny managed to fully escape without anyone seeing where he went. When his mom shouted, “Kenny!!” the dog immediately went after him, through several doors and around several corners to catch up with Kenny in a stairwell just before he got outside.  All of this even though “Kenny” was not his established tracking command and the mom did not get out the tracking equipment for a formal blind track.

I bet I know some moms who can see a use for this trick at Foster!!!

We got to learn all about how the seizure and scent alert dogs work even though A’Kos is not trained for that task.  It was fascinating to hear about how each seizure dog will alert with a different but consistent time window before a seizure, anywhere from 20 minutes to 24 hours.  Also, that window will usually get wider if the seizure is going to be stronger.  The dogs will often alert on seizures in other people as well, not just their own child.  One family told how their dog had already alerted to a seizure on its first night back in the hotel! Jeremy stressed the importance of keeping a diary so that they can be sure of their dog’s alert window.  Shelby also demonstrated practicing on physical seizure alerts, where the dog alerts to the seizure itself.  One dog in the class has been trained to alert for peanuts, and he discussed handling that alert as well.

During all of the tracking and scenting lectures, Brian and I worked on acclimating A’Kos to Kender’s cane.  Although he was conditioned using a modified golf club, Kender’s cane is different enough to need special treatment. Also, unfortunately, Kender tends to throw his cane around when he gets into a meltdown, and A’Kos was too close to one of these yesterday.  So today, we worked with the cane, tossing treats around it, laying it across A’Kos while he was in a “down”, feeding A’Kos treats while swinging the cane back and forth near him and even toward him.  Sometimes I would just walk up with the cane and give A’Kos a treat with the cane right next to the treat. By the end of the day, we had A’Kos back to pretty much ignoring the cane.  Amazing!

The last thing we learned about was the “come” command.  Jeremy stressed that this command needed to be reserved in use so that it would be effective in emergency situations.  We should never use “come” to bring A’Kos to the vet, to put on his harness, or to give him a bath.  When we practice the “come” command, we should use Bil-Jac so that A’Kos places the highest possible value on obeying this command.  We watched Jeremy practice with his own dog Brody, getting him to come from anywhere in the room as excited as if chasing a ball.  I also noticed how Jeremy dealt with Brody as he was leaving.  On the way from the building to his car, Jeremy never once said, “Come.” Instead he used words like, “Come on,” and “let’s go” and “over here” with Brody’s name.  The name and the excited voice were the important part.  “Come” is special, so Jeremy knows that Brody will always come when called with that word, whether to dodge a car or make it out of a burning house or whatever the urgent need is.

When class was over, Kender and I were dozing on a couch.  A’Kos came over and grabbed a ball right out of my purse, so Brian took him out back to play ball for a bit before leaving.  Boy, does A’Kos love to play ball!  Yesterday and this morning we had trouble getting A’Kos to get into the car.  This afternoon, we just tossed the ball in, and A’Kos went right in after it!  In the hotel he still wants to play ball.  He will go get the ball and bring it to me, dropping it at my feet to get my attention.  If I toss it into the next room, I get to see him bounding away after the ball, happy as anything and completely adorable.

Kender wasn’t as close to A’Kos at dinner tonight as he was last night.  He also spent time with other dogs today, even going up to lean on Brody during the lesson! The bond is still growing, though.  A’Kos is learning to look at me now when Kender fusses, so I can use the disruption commands later on.

Our First Night with A’Kos

Today it was rainy a good chunk of the day, so instead of going outside Kender had to stay in.  He found his favorite riding toy and did laps with that for most of the day.  He snuck off into the back room a couple of times, and he climbed into empty dog kennel several times, but on the whole he seemed much happier than he has been the past few days.

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Jeremy talked a lot more today about how we are going to gradually get the dogs to want to come over to our kids when they are kicking and screaming, or just doing something else we don’t want them to.  First we have to mark our children and the behaviors for the dogs, to make them super appealing.  When Kender screams or kicks, we move right in to give A’Kos treats, especially if he doesn’t move, and we try to lure him closer to Kender with the treats when we can.  When Kender is being good and happy, we encourage him to give A’Kos treats. We get excited with A’Kos whenever Kender comes near, saying, “Look, it’s Kender!” and petting and rubbing him.  When Kender does what we call turtling, where he curls up in a ball on the floor and refuses to respond to anybody, we put treats on his back or side for A’Kos to eat off him.  Sometimes that gets Kender giggling and moving again!

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We worked more on distractions and on walking close.  A’Kos has an extra step to learn with us because we want him to walk on our left side, so that with Brian he is not on Brian’s blind side.  To do this, we are retraining A’Kos to use “close” instead of “heel” to walk on our right.  A’Kos is such a smart dog, he is picking this new command up very quickly, and despite some apprehension from Jeremy he seems to distinguish between “close” and “A’Kos” just fine.  A’Kos is learning very well to stay with us, and successfully ignored treats and balls on the floor and even Jeremy’s own dogs as they bounced and ran through the room after treats Jeremy threw at them.  We dropped his leash and walked away, let other people walk around him, and even took turns stepping over each other’s dogs…and all the while, the dogs stayed where they were given a “down” command until they heard “free”.  It really is amazing to me to see this!

Another command we learned today was “place”. This command goes along with a mutt mat or floor pad that can be rolled up and taken wherever we go.  When we give the “place” command, A’Kos will go to his matt and stay there until he hears “free.”  We can use this at home or while traveling, or at Foster when we are there all day.  4 Paws gave us a first “place” matt for A’Kos, and Kender really likes it.  I’ve even caught him using it as a blanket this evening!

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At the end of the day, it was time to bring A’Kos back to the hotel with us for the first time.  We had to bring back food, bowls, the mutt mat, and The Kennel. (I capitalize that because this thing is so huge I still have trouble with the scale of it, sitting here in this little hotel suite.)  The Kennel was so big we could not get it in the car, so another family who came with a pickup truck offered to carry it and follow us back to our hotel.  Thank goodness!

Although we are not allowed to take A’Kos into public yet, the hotel lobby does not count as “public”, even at mealtimes.  This evening we got to bring A’Kos to dinner with us.  He behaved wonderfully, coming in at “close” and calmly going “down” behind the table, waiting while we got food and ate.  Then, the most amazing thing happened, something that still makes me a little teary hours later.  Usually, when Kender loses interest in his food, he’s done with sitting at the table.  In a restaurant or hotel, that means he’s off and running, out the door or getting into trouble.  When Kender got up from his chair tonight, he wandered over to sit and lie down next to A’Kos, petting him and hugging him and using him for a pillow.  This was so amazing to see, especially since Kender had been showing no interest really in A’Kos at 4 Paws.

After dinner, Kender seemed like a different boy.  He was talkative and cooperative as we went shopping for ponchos, swift to get in and out of his bath, and not fussy when it was time for bed.  We tried putting the mutt mat on top of the bed we got for A’Kos and putting that next to where Kender sleeps on the couch. We put Kender to bed, then gave A’Kos the “place” command.  A while later, I noticed Kender had his hand on A’Kos.  Kender petted him for a while, and I let him feed A’Kos some treats.  When Kender hit A’Kos or pulled his tail, first I gave A’Kos treats, then I would “free” him, at which point Kender would declare A’Kos needed to come lie down!

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Much as I can’t believe how well-behaved these dogs are, I can’t believe this bonding is really truly happening right before my eyes, so fast!

Tomorrow morning bright and early we do our first track, rain or shine. Probably rain–which is why we were shopping for ponchos tonight.

Obedience School

All of the 4 Paws dogs are wonderfully trained.  The training room is full with nearly 20 families, some of them with more than one child, and we all have our dogs out at the same time.  Our dogs spend most of the time at our feet, and two or three teams will be practicing a particular command in the center of the circle.  All day long, the kids and their caregivers are in and out of the room, and there is screaming, throwing, hitting, chasing, kicking, everything.  Today, one child threw a plastic “lava lamp” type of toy across the room, and it shattered right next to one of the dogs out in the middle walking.  No matter what the distraction, these dogs stay where they are.  They may look up, but they never move their bodies until they are explicitly freed, and many of them won’t even look up.

Our biggest objective these first few days is transferring A’Kos bond to us.  Today, we again practiced the basics, adding “potty” to the “sit”, “down”, and “free” we learned yesterday.  The other dogs in the class also added “heel”, but for us this will be an extra step.  Brian is totally blind on his left side, so any person or dog he walks with needs to be on his right or he can’t see them.  Kender is opposite, blind on his right side.  We will be retraining A’Kos to primarily walk with us on our right side, so that he is on Brian’s good side and Kender’s as well.  For today, this meant just practicing a close walk with gentle corrections and lots of encouragement as A’Kos unlearns walking on the left.  Tomorrow, we will add a “Close” command for that position on our right, so that we can retain “Heel” for the left if we need it.

In between working on walking and heel, we all practiced the stay.  4 Paws dogs are taught an implied stay, so they learn to remain in a sit or down position until they are given a “free” command.  Our dogs practiced their staying power while the trainers gave them all kinds of distractions.  In addition to ignoring our kids, the dogs completely ignored bouncing balls, squeaky toys, and even half a bag of Beggin Strips scattered in front of their noses one piece at a time!  All of the dogs are so well-behaved, and they are all quickly learning to see us as their new family.

Although the dogs have been trained to not be frightened or startled when their trainers mimic the behaviors our kids showed on the videos, they still have not met our actual kids before.  We have to work to teach the dogs that our kids are good things to be around, even when they scream and kick.  Jeremy says the best way to do this is to have the kids give their dogs the best-tasting treats, while parents use the dog food.  Today we finally got Kender to give quite a few treats to A’Kos while we repeated his name and “good dog”.  Kender is starting to get the idea a bit, and when he turtles up on the floor I can bring A’Kos over to him and make him smile.

We will have to work even harder to get the dogs comfortable with meltdowns and things.  Whenever a child acts out, we praise the dog and give it treats.  If our child kicks the dog, Jeremy says we should pet the dog with our feet.  Give the dog treats if the child comes and lays on it.  Kender hit A’Kos accidentally with his cane this afternoon; Jeremy suggested putting treats on the cane and letting A’Kos eat them to make the cane a happy thing.

Kender spent most of the day outside today.  Every time we go in the training building, he shouts to go outside, kicks and screams.  Toward the end of the day, as he got more tired, Kender would just turtle or plank in the middle of the training floor.  Hopefully over the next few days we will get better at learning how to use A’Kos to comfort and distract Kender.

I’m going to have to get somebody to take a picture of Kender giving A’Kos a treat tomorrow.  I didn’t really take any pictures today, so here are some more from yesterday:

Meeting A’Kos At Last

Today was amazing and exhausting all in one. I spent half the morning fighting back tears and half the afternoon fighting off Kender.  I have more pictures, but because I am posting from my tablet most of them will have to wait until I can get to a real computer that isn’t painfully slow at inserting pictures!

We got up early and had breakfast in the hotel lobby, where we met some of the other families in our class for the first time.  Something about seeing the other families with their children so much like Kender makes me feel a little less alone in the world. We really haven’t spent a lot of time around other autistic kids, and I didn’t realize how much I needed to see that.  I wonder if the other parents felt the same way. There are 18 families in our class, I think, and all of the kids have at least some level of spectrum issues.  At breakfast we met a bouncy little girl who was too grumpy to sit and eat breakfast…just like Kender.

The hotel provides a fabulous spread.  Getting all our breakfasts and more than half of our dinners cooked for free makes all of this so much easier, and the hotel does a lot of work with 4 Paws families so they are accustomed to our special kids in their dining area.  In fact, everything about this hotel is wonderful…except the in-room coffee.  The lobby has coffee all day long, it’s a quick walk across the courtyard, and it’s delicious coffee.  The coffeepot in the room is only a 4-cup pot, though, and they only give you a single pod for it.  That’s fine, we’ll have an eye-opener and then go fetch, but I want to share because if I had known ahead of time, I would have brought our Keurig, or even a French press or a moka pot.

Every time I stopped to think about what we were doing and where we were going, I started to choke up.  Kender showed some of that secret understanding he has, where he shows how much more he knows and understands than he is telling.  When we finally had teeth brushed, shoes on, canes ready, balls and treat pouches in the bag, he was up and out the door and into the car like he knew exactly what was going on even though he’s never really shown any enthusiasm about A’Kos.

We got to 4 Paws a little after 9:30, and I choked up again pulling into the driveway. And meeting Kelly, who worked with us on our fundraising efforts. And signing in and putting Kender’s name down on the sheet as “companion.” And seeing all the kennels lined up for us. And finding A’Kos’ kennel. And putting my fingers up to the door and saying Hello for the first time.

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Kender wasn’t really interested, although we tried to get him to come over and say hello.  Meanwhile the little girl we’d met at breakfast was running up to her dog’s kennel, saying his name and asking when he could come out. That was hard.

We met families from South Dakota and Chicago and even Ft. Worth. We worried about the family from the west coast who had missed their flight and were still stuck on the highway hours away as class was starting.  There were coffee and bagels waiting for us, and Kender found a nice circuit he could walk around the training area and the bagels and the kennels, the crowds parting before the mobility cane like they always do.

Jeremy, the head trainer, introduced himself and some of the staff, including Shelby, who seems to have done the most work with our dogs. He passed the mic around the room so each family could introduce themselves a bit. The kids were wandering around a bit, especially Kender and his new “friend” who seems so much like him.  Finally, the moment we were all waiting for came.  Time for the dogs to come out!  They got Breakfast Girl’s dog first, and from the layout of the kennels we thought A’Kos would be near to the end. No matter; I choked up again watching that bouncy girl get to hug and pet her dog.

And then they called for A’Kos to come out! The second dog!  I wasn’t ready!  Kender was still wandering over by the other side of the room! Shelby brought us one of the two bags of dog food that were on his kennel, labeled with his name.

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And there he was, so hungry and ready for his food!  I tried to dole it out a little at a time, to make it last, but then I discovered…

DOG SLOBBER!!!!!!!

Oh. My. Gods. I never considered this, never ever ever. I never had a big dog before. I grew up around dachshunds. Every piece of food I gave A’Kos got licked out of my hand, snuffled, garbled, SLOBBERED! And the more he ate, the worse it got! Slimy, slimy, slimy!

Yes, I have some sensory issues.

There’s the Fair Warning to you. Big dogs come with slobber and slime.  It got better as the day went on, and I was only giving him one piece every so often instead of a whole meal by hand. Still… Dog Slobber. *sigh*

About halfway through the bag, she asked if she could hand us his leash, and there we were, just us and A’Kos.

Brian went to get Kender, and we coaxed Kender into letting A’Kos take a couple pieces of food out of his hand, but it didn’t last long before Kender was headed back toward his new favorite riding toy. We brought A’Kos over to Kender then to say hello, but Kender still was not impressed. So Brian took A’Kos back over to our chairs to play a bit while I watched Kender.  Kender kept asking to go outside, so I finally asked somebody to show us where the playground was. We were the first to escape.

The playground area was really nice.  There is a big paved area with a basketball hoop and a ton of trikes and power wheels and things, two playsets with slides and climbing, a swingset with wonderful plank swings, a roofed area with picnic tables and chairs, and even a trampoline.  After planking a bit in the grass and enjoying the quiet, Kender spent the rest of the morning swinging and pushing a power wheels toy around. Brian brought A’Kos out to say hello again, and then it was time for lunch.

There is no shortage of anything around here.  Restaurants of every kind everywhere, all the grocery and convenience stores, malls, everything.  There is a Starbucks near our hotel and a Tim Hortons near the training facility. For lunch today, we chose Subway, and with breakfast and dinner covered by the hotel we might just be lazy and eat lunch at Subway every day…especially since they were nice enough to give Kender an extra bag of cucumbers and peppers!

The afternoon session was the real beginning of the training program.  Training us, the parents, that is. The dogs are already excellently trained.  It’s the parents who have to figure out how to handle the dogs.  Afternoon session was 3 hours, and all we worked on were “sit”, “free”, and “down”.  We have to practice doing all the commands and give a food treat with every command so that A’Kos will bond with us instead of Shelby and Jeremy.  He is such a good dog. I can get him to sit and down so easily. The problem I had was getting him to stay in down.  The little stinker would roll over to get to a neighboring dog to play with, or he would get up and lie back down in the walkway.  Jeremy said the walkway was the problem.  We happened to pick seats right next to the kennels, so every dog coming out to their family walked past us.  All those dogs are A’Kos’ friends, more so than we are right now, so of course he wanted to play.  I did a lot of practicing “sit” and “down” just getting him back into place and out of the walkway today.  Tomorrow, I will pick a different seat.

Kender was very upset and tired all afternoon.  Brian took him out to the playground for most of it, but kept bringing him in because it was hot and sunny and he was turning a bit pink. Every time Kender came inside, he starting screaming to go back outside, and he threw the most awful fits I’ve ever seen from him, kicking and screaming so hard he was hurting me and scaring A’Kos.  I think being out of his familiar environments is taking a toll on him.  Hopefully that will get better after a few days here.

At the end of the day, we left A’Kos at 4 Paws (Kender wouldn’t even say goodbye) and headed back to the hotel.  We had spaghetti and meatballs for dinner, with complimentary wine and beer (well, Coors Light; can’t have everything). The manager on duty came by and asked about our stay, why were we there, etc., and came by repeatedly to refill our glasses.  Kender ate a ton of breadsticks, which will surprise nobody who goes to Foster with us.  Later we went to Meijer  to pick up a few things, and Kender took several walks around the grounds with Brian.  He’s passed out, now, getting more sleep tonight than he did last night!

After today, I feel a little less sure about bringing A’Kos home. Even though I think I did well with him today, I worry about how I will do with him full time. We’ve known at least one service dog who essentially got untrained by his owner, and I don’t want that to happen with A’Kos.  I worry about my past failures with dogs.  Brian seems even more confident.  He trusts that A’Kos is a good dog and follows commands so well even on our first day with him.

We brought the dog bed we bought for A’Kos down here with us. It is sitting on the floor next to where Kender is sleeping, waiting for him.

Arriving in Ohio

We had a really nice drive down to Ohio. Most of the way, we were accompanied by an absolutely gorgeous rainbow so bright even Brian could see it. When the rainbow went away, I got a view of the almost-full moon out my window in its place.  I think those are wonderful omens for our trip to get Kender’s dog A’kos.

The hotel where we are staying has a full breakfast every day and dinner four days a week. We need to pack a lunch or eat out; tomorrow will likely be fast food since we haven’t been to the store yet.  The suite is smaller than I expected, but I don’t really plan on staying in the room for most of the day.  I look forward to lots of moving around town as we learn how to work with a service dog and see all the local sights.

I can’t believe in less than 12 hours we will have met Kender’s dog! So many months of waiting…it has only seemed real this past week, since we got A’kos’ name and picture, and it still seems a little unbelievable.

Kender is busy playing with every door in the room, including the outside door, flipping all the light switches, pulling the fan chain…

Meet A’Kos!

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This is A’kos’ letter to Kender today:

Hello!  Bet you want to know who I am! That is why I am writing to you!  My name is A’kos. My name is special because I am named after a type of Hawk. I am a member of the Hawke Litter. Hawke is a little boy who earned his angel wings because of seizures. I will work extra hard in my job to make him proud.  Our Dad is Gil, a Golden Retriever and my Mom is Delilah a Labrador Retriever. We are Golden Labs born 5/23/2013 and if you can’t tell by the name I am a boy like you! I was born at 4 Paws and then I went to the prison to spend time with some great inmates using their time in prison to do something good! After that I went to college at WSU and got really smart! Of course I did my advanced training at 4 Paws and now I am all ready to be your new BFF!  Please bring a ball so we can play! Hurry to Ohio! Xoxo A’Kos

Swing 2.0

10175972_10152761214034745_823227162545809448_nKender got a new swing today.  If I had been doing HabitRPG last year, today I would have accomplished the reddest of my red reddy red to-do tasks.  That rider has been sitting in our shed since we put this playset up…was it 7 years ago? 8?  There’s been a baby swing in that spot for most of that time.  By the time Jarod really outgrew it, Kender was ready for it.  For the last two years I’ve been saying I was going to take down the baby swing and put up the rider.  It took the family across the street asking if they could have our baby swing to get me to do it.

And now I know why I was putting it off.  I am going to be so sore tomorrow, I’ll be lucky if I can manage to salute the elements, nevermind actually carrying things up to the room.

I didn’t expect it to be such a big deal.  I thought, well, there’s been a swing there all along, with the swing hooks already installed.  Take down the baby swing, hook the new swing on the same hooks.  Done!

Wrong.

When I got the box out, the swing itself was in pieces, so I went back inside and down to the basement to dig up the 9/16″ wrenches.  I took those out to the playset, hauled the contents of the box over, then looked again at the instructions.

It needs its own brackets installed, four of them.

Back into the house and down to the basement to get the portable drill, find the 3/8″ drill bit, carry it out to the playset.  Back to the basement to find the stepladder, carry it out to the playset.

Have you ever tried to drill a 3/8″ hole in a doubled piece of wood that’s been weathering outside for 8 years?  When said piece of wood is over your head with the tallest ladder you have available? I tried, really hard.

Back into the basement to dig the corded drill out from underneath all the other power tools on the workbench.  Then dig through every coffee can and finally completely unload the bottom shelf with all the bladed power tools to find the @#$@#$%#%^ bit key.  Take that out to the playset.  Go back to the living room, get the one-and-only ginormous extension cord, wade through the black raspberry patch to plug it in.

Have you ever tried to drill a straight hole through double-thick, aged wood over your head so that it lines up with metal brackets on both sides?  All I can say is that I spent more time drilling those holes, multiple times from both sides, than on anything else.  Arms holding a drill over my head the whole time.

With that, and with the holes in the swing itself not being quite big enough to get the bolt through, instead of a quick swing swap I spent about two hours pushing and pulling and lifting and hammering and swearing. Lots of swearing.  And all this was after my bike ride and bodyweight workout for the day.  So yeah, I’m hurting, especially above the waist.

But Kender has a new swing!

Tidbits

  • When the Kirby salesman comes and vacuums my living room with his Kirby vacuum and gets up all that extra dirt, I don’t hear, “Kirby vacuums are better than my vacuum.” I hear, “Gods, I’m a terrible housekeeper, and if I would just keep up with vacuuming my carpets every week, there wouldn’t be so much dirt there.”
  • These days, I get all my news from Facebook.  It’s a good thing I have friends in all parties and of all creeds, pretty much.
  • I would rather knit for $5/hour than be a dressmaker for $20/hour.
  • Every time I try to clip and use coupons, I wonder if I wouldn’t make more money per hour knitting.
  • I have no interest in forcing my autistic child to suppress himself and behave unnaturally just because he will “need” to as an adult. I much prefer seeing the person he is and waiting to see the person he naturally grows into.
  • I am impatient for Kender to “grow” into better communication, though.
  • I washed my car once. Then winter happened.
  • I have a very short attention span when it comes to getting Kender to do something he doesn’t want to do.

The Kender Report

Kender has had a busy week. On Monday, he went under anesthesia for an eye exam, which showed nothing new. Dr. Trese said we could start backing off one of the three eye drops Kender takes every day, which is happy news.

The bigger event was Wednesday, when Kender went under anesthesia again, this time for dental work.  At five years old, Kender has never had a successful dental exam. Until just last year he wouldn’t even let us clean his teeth regularly. Since we started using a spin-brush and singing a song, he lets us brush his teeth so well that the dentist could find no fault with our cleaning job.

The damage of years past was already done, though. Dr. Meyers gave Kender eight filling, four caps, and one baby root canal. The root canal in particular means he’s probably been in pain from his teeth for who knows how long. How exciting that we found and fixed yet another source of pain for him, and sad that he was in pain at all.

Two surgeries in one week were a little rough on Kender. He was droopy for a couple of days, much slower to wake up than usual, and one evening he even ran a brief fever. Today he seems to be back to his usual self.

I am so excited about the potential developmental leaps Kender may make now that his teeth are fixed, much like the incredible progress he made in 2012 after his eye pain was relieved. I want to say I see changes already, longer speeches and more paraphrasing replacing straight mimicry. In reality, it’s probably too soon to see any definite improvement, and I need to sit back and relax. A hard thing to do sometimes!

Safe Space

This post from AutisticChick came up in my feed today, and it along with some of her other posts got me to thinking about Kender, about the differences between our life with Kender and what I see other people describing in support groups.  I thought about the way I try to interact with Kender, about how it is different from what therapists and teachers would do in school.

My primary, overriding philosophy with my kids these days is to let them be themselves as much as possible.  I am here to act as a guide, a resource for when they have questions, a role model as much as I can be, a safety net if they stray unknowingly into danger.  My kids amaze me with how much they manage to learn and grow on their own, outside of formal “school lessons.”  I want to encourage that as much as possible.

With Kender, I try to do the same thing.

As I discovered my own Aspieness as an adult and my daughter got her diagnosis, I reached out to connect with other adults on the spectrum.  The groups that I found were open not just to those of us who mostly “pass” but also to those who will never pass in real life, the non-verbal, stereotypical autistics.  In between were some who may have been more severely impacted as children but who now can “pass” or come close to it.  Those who were diagnosed as children had the most interesting stories to tell.  Over and over, I heard tales of what it was like to go through typical autism therapies from the viewpoint of the autistic, rather than the parents and teacher.  I heard about overwhelming stimuli, about Pavlovian training regimes, about what it was like to figure out how to put on a mask for the therapists and parents and teachers until that mask got stuck in place.  I heard about what it was like to move into adulthood with that mask on, only to discover too late that it was suffocating, burning, melting the real face, the real spirit, beneath it.  I heard about the meltdowns, the PTSD, the traumas that would come to the surface in adulthood, causing breakdowns, interfering with real life as these people had to relearn how to interact with the world all on their own.  All in the name of making sure that, as children, they didn’t look and act differently from the other children.

I don’t ever want to do that to Kender.

So I work with him in my own way.  I listen to him.  When he doesn’t want to be guided into an activity hand-over-hand, I don’t try and force him to accept it, as the therapists wanted us to do.  I wait until he is ready.  Over time, I have learned how to get Kender to engage in activity on his own terms.  Usually it means getting the activity out and waiting for him to come to it.  It means playing with the toys ourselves, and letting him observe what we do.  It means turning a book into a song, playing with the song, and then bringing him back to the book to see that the song is on the paper, too.  It means accepting his desire to play with a toy in the “wrong” way, finding out why he plays that way if I can, and building on it.

When Kender is trying to escape a situation, especially as he gets older, I let him wander for a while.  When we go to park days and Kender needs to leave the noisy playground for a quieter place, I let him head off down the trail into the woods, following a distance behind, keeping him within sight but not interfering.  If he heads toward a parking lot or street, I move to stand in front of him.  I try to redirect him with open arms, ready for a hug or a cuddle.  At Foster, I bring him back to the room, but I try to encourage him to walk on his own, rather than pick him up and carry him.  When we come back, if he wants to go hide in a cabinet, I let him.  I know that’s where he feels safe.

I talk to Kender the same as I talk to my other children.  He can’t talk back much yet.  He is non-verbal, although he has words for concrete things.  He can say, “Can I have some blueberries?” but he can’t say, “My tummy hurts,” or “Yesterday I had pizza for lunch!” or even “My name is Kender.”  I pretend he can, though, and I search inside what he does show me for clues to the words that are stuck in his head.  When I tell him I’m disappointed in his behavior, he will get very quiet, and sometimes plant a kiss on my lips (usually he goes for cheeks) to say he’s sorry.  When he’s happy, he will bounce up and down and flap his hands, run off into another room and do a circle or two before coming back.  When he’s bored, he throws things down the stairs (and I remind him that I would rather he found another way to make loud noises!).

I’m not perfect.  There are days when I think that one more minute of his loud “Aaaaaaaaaaaaaaaah!!” sound will drive me absolutely bat-crazy.  There are times when I hurt so much that I can’t do anything more than pick him up and bring him back to where the rest of us are.  He’s not perfect.  There are times when he gets sent to bed because he won’t eat his dinner, when he gets a time out for hitting or breaking or hurting somebody or something.  He’s a child, and children get into trouble.  I’m a human, and I lose my temper and get frustrated.

I didn’t care that he was spinning the wheels on his trucks as a 3-year-old instead of running them along the ground and making engine noises.  He got there in his own time.  I don’t expect him to stop flapping or rocking or humming just because they make him look different.  He’ll stop if and when he doesn’t need them any more, when he discovers how to self-regulate and why this will be a good thing.  My goal is not to force him to move at a faster pace, so that he can look and act like his age-peers.  My goal is to support him and keep him safe while he finds his own path for dealing with the world, so that when he gets to the point of being an independent adult capable of making his own way, he comes there knowing exactly who he is, with the self-awareness and understanding he needs to adapt to new situations, without the trauma of trying to live up to others’ expectations.

When I was putting Kender’s Match Video together, I worried at first that we hadn’t caught enough footage on meltdowns.  When I thought about it some more, though, I realized we don’t really have that many.  The meltdowns don’t feel like the biggest problem to me, like they seem to be for some families.  I think one reason for that is not pushing Kender past his limits just to force him into a mold or into our comfort zone.  I try to listen to Kender and meet his needs before he gets to the point of a meltdown, and I will remove us from a place or situation early if I can in order to avoid it.

In some ways, maybe, our path takes more work.  We work hard to understand, we shape our lives around his needs to a certain extent, we try to decipher what’s going on in his head.  But mostly I think it’s less work.  The path I’ve chosen to take with Kender, as opposed to the path I saw therapists and schools laying out for him and children like him, it’s like the difference between industrial farming and sustainable agriculture.  One produces faster and higher-volume results, but it takes a large amount of outside inputs, produces inferior products, and over the long term ruins the land through pollution and nutrient depletion.  The other takes a different kind of work up front, but it builds a strong, self-sufficient ecosystem, rich and varied, capable of taking the natural inputs of the world and producing a rich result, again and again and again for a long time.  It might not be as pretty.  It might not fit in a mold or take the best advertising pictures.  But it is healthy, strong, and nutritious.