The Kender Report

Yesterday we went to Meijer Gardens with our homeschool group.  We’ve been so many places this summer: the aquatic center, the zoo, so many parks, the county fair, the children’s museum, to the store almost every day.  I’m learning to turn what’s been, “always no, unless there’s a really good reason,” into “always yes, unless there’s a good reason not to.”  We’ve never been challenged on access with A’Kos, he just is there, like a cane, ready to help.

I thought about Kender’s development today in terms of question words.  We all know the basic six question words: Who, What, Where, When, Why, and How.  We all learn how to answer each of those questions one at a time as we grow and mature.  I can see Kender progressing through these, and each one he gets reduces his frustration and increases our ability to interact with him.

Kender has mastered What.  He can answer to, “What is that? What are you doing? What do you want?” Being able to tell us what he has and what he wants are huge helps for us as parents.  It can get a little hairy sometimes, such as last when when he was throwing a huge fit because he wanted “lip balls” for breakfast.  It took what seemed like forever for us to figure out he was trying to say “Fruity Pebbles”!  It can be strange sometimes to here him make these kinds of toddler speech mistakes after so many years of perfect mimicry, but it is in fact a step forward as he learns to create his own speech instead of simply parroting the speech of others.

Now Kender is working on Who.  He has been saying “Hello” and “Goodbye” and giving people names for a while.  Last night, he amazed me by answering, “Who made your quesadillas?” with, “Daddy made my quesadillas.”  He has learned pronouns, which is a pretty big leap in abstract thought.  When he repeats something we say to him, he will replace pronouns appropriately. “What are you doing?” “I am getting my book player.”

Where is probably next, I think.  He can answer, “Where are you going?” and will often ask, “Where is Daddy gone?”  Sometimes he’ll repeat that over and over, asking Where for MawMaw, the cats, his brothers and sisters, so I can see his mind working at it.  While I can tell him to throw something away or put something in the dirty clothes chute and he will do it, asking him where something is doesn’t always get a response, even a non-verbal one.  He’s working on it.

I’m looking forward to When.  I feel like that is the point where we will be able to start working on prereading skills a little better.  When is very abstract because it involves thinking outside of the Now.  Even the Who and Where are usually pretty tightly bound to Now.  When requires reaching backwards and forwards in personal time.  Being able to answer What and Who questions for the past and future, being able to anticipate future events, having a sense of days and weeks and months, all of these will be a big leap.

When I think of where he was just a few short months ago, though, he’s made huge leaps already.  It’s so exciting to watch!

Links and Things

I don’t have a loud voice shouting to get out today, so instead here are some little voices.

  • My middle child loves to go out in the rain.  As soon as a downpour starts, he’s at the front door asking to go out in it.  I love being able to say yes.  Yes! Go dance in the rain!  Revel in Mother Nature!  Get wet and muddy and laugh about it!  What is life if you can’t go play in the rain?

    My neighbor caught this shot of my son in the rain.

    My neighbor caught this shot of my son in the rain.

  • Michigan State Police Say Most Speed Limits Are Too Low.  Most people realize that you’re not safe out there on most highways if you’re driving the speed limit.  I realize it.  Yet I’m one of those assholes driving the speed limit, partly because I have panic attacks whenever I have to deal with the police, partly because I can’t bloody well spare the cash to pay the government squeeze for the privilege of driving safely with the flow of traffic.  I get tailgated.  I get cut off.  I get honked at.  Thanks to the speed limit laws, I’m stuck.  Government needs to back out of micromanaging driving and concentrate on the truly dangerous, as in so many other areas of life.
  • The Ingham County Fair was last week.  The older kids all went on their own one day, most with free tickets from the library and allowance money for rides, one because a friend took him.  I wasn’t planning to take Kender until my mother offered to do it, but I’m sure glad that she did, and we did.  With A’Kos, Kender waited in lines, allowed operators to help him on and off the rides, asked for more rides, and generally behaved like many other kids there.   It was so wonderful to see him riding the rides, holding on and smiling.  While handling A’Kos in crowds comes with a bit of stress of its own, overall the experience was so much better than taking Kender alone would have been.  Instead of melting down, Kender would just occasionally bend over and give A’Kos a hug.
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Fake a Disability

20140715 Kender at zoo - 1

Without AKos, this trip to the zoo would not have happened for Kender.

“Hey, did you know that [insert disability here] people get to [insert special access here]?  We could do that, too, because the government says that businesses aren’t allowed to ask questions.  Here, you pretend to have [insert disability here] and I’ll [get fake certification/baldly lie/pretend nothing’s wrong], and then we’ll get [insert special access here], too!”

Handicapped parking. Special access to rides without waiting in line. Special test-taking accommodations. Front row seating. Service dog access.  Whatever the accommodation, I’ve seen folks lie and cheat their way into gaining access.  I’ve seen little pet chihuahuas in their service dog vests purchased online.  I’ve seen the looks when we jump a line or take our reserved seating.  I’ve even had friends brag to my face, in front of my blind husband, about how they were parking with grandma’s handicapped plate.

Only a poor simulation of what you might see

Only a poor simulation of what you might see

Stop and think for a moment about the difference between your life and what your life would be like disabled.  What if you were visually impaired?  Put some broken sunglasses on, and put some tape around the sides so you can’t see around them.  Just for good measure, splatter some paint across them, and maybe give them a prescription that’s wildly inaccurate for your eyes.  You can’t take them off or fix them, not ever.  Walking down the sidewalk, you can’t see that bench sticking out just far enough to hit your shins.  You also don’t notice the chairs in the restaurant, the shipping pallets in the store, the little kids running in front of you, the holes the gophers dug in your lawn.  Every step you take comes with the possibility of pain and embarrassment, and because you have some vision you might try to forgo the mobility cane, forgo the obvious label and free up a hand because, after all, you can see a little.  Going to the movies, a live show, comedy or a concert, attractions at Disney?  You’re only going to be able to see bits and pieces, a flash of light here and a moving shadow there, unless you’re lucky enough to talk your way into the front row where you can see more detail, maybe somewhat approach the experience of everybody else who paid $5/10/50/100 to be there.  Waiting in line for a ride?  You can’t see the cute movies on the TVs overhead, you can’t see the decorations in the bushes, you can’t watch the ride and the faces of the riders as you approach your turn.  All you are doing is standing there, nothing to look at, for an hour or more.  How about that parking lot?  Imagine parking at someplace like a Ren Faire and walking a half-mile or more across a rough field when you can’t see the rocks, the tree roots, the way the ground goes up and down every couple of feet.  Can you make it without a sprained ankle or bloody shin, even with a mobility cane?

Still think it’s pretty cool that you used somebody else’s parking space?  Still thinking about lying to get a disabled wristband at the park?  Still grumbling when you see us get seating up front, while you watch the show from behind us with your perfect vision?

a small piece of the form we send to our police department every year

a small piece of the form we send to our police department every year

How about autism, that condition you think your kid can mimic for as long as it takes to get that special access card?  If you only have neurotypical children, it is so difficult to convey the reality of raising a child with autism.  Think about trying to potty-train a child when you can’t reason with them, can’t talk to them, can’t explain anything (in our case, you couldn’t even show him), can’t read it in a book, can’t watch it in a movie or TV show, can’t play a computer game about it, can’t use stickers and charts and earn delayed rewards, can’t talk about the difference between big kids and babies, none of that, you can’t do any of it because your child can’t talk, can’t understand rewards, can’t understand future and past, none of it. Think about having to make sure your child has a diagnosis and is registered with your local police department just to protect yourself (or your child!) from going to jail and your child from the foster care system.  Think about trying to go to the store, go to McDonald’s, go to a park, do any of the normal things you don’t really even think about with a toddler in a 6-year-old body.  Think about trying to figure out if your child has an ear infection, a stubbed toe, or gods forbid something like appendicitis, when your child’s only way of expressing pain looks exactly like the way he expresses frustration, impatience, fatigue, and confusion, via a total meltdown that involves hitting, biting, screaming, and destruction of property.  Try, just try, waiting in line for an hour with this child who doesn’t understand what’s at the end of the line.

Right now, federal law protects you when you lie and cheat your way into the accommodations that help make life just a little more bearable for those of us with disabilities.  Businesses aren’t allowed to ask you if you really need that alleged service dog, they aren’t allowed to ask for proof that your child is autistic before granting access.  It’s not going to stay this way, though.  The more these accommodations get abused, the more businesses are going to fight back.  Already, we’ve seen our access to accommodations get taken away completely as parks like Disney take away the ability to skip lines at the rides (because waiting for an hour outside of the line is no better for an autistic child than waiting for an hour inside the line, and skipping the lines for many was the difference between riding one ride and leaving, and maybe riding as many rides as everybody else before going home to have their meltdown).  Handicapped spots are getting moved farther down the parking lot, only requiring a ramp to qualify, nevermind the actual distance involved.

If businesses had their way, many would probably already be denying access to service dogs.  Incidents that happen across the country with untrained dogs make it dangerous for businesses to allow access.  You may still be protected by the terms of the law for now, allowing you to declare your own service dog and make your own identification, but that’s not going to last.  All it takes is enough people to be upset about this to change the law.  What will happen then is the question.  Will the law be changed to simply require us to provide proof of disability, certification of our dogs with numbers a business can call to verify training?  Or will dogs and other service animals be suddenly outlawed, all access protections taken away, leaving those of us who need these animals to go out into the world at the mercy of businesses jaded by their experience with fake service dogs?  As it is, children who deal with the government school systems do not have the protections you would think, and I have yet to hear of a school that did not put up some kind of resistance to having a service dog come to school with their child.

“But you’re a libertarian!  What would you do without any government protection?”

Kender with AKos, calm and not screaming

Kender with AKos, calm and not screaming

I’ve never had a problem explaining myself to people with questions.  Want to know exactly what Kender’s service dog does for him and why he’s with us?  Ask away!  Better yet, just watch.  Every minute they are walking together, you can see how A’Kos keeps Kender going.  You can watch them curl up on the floor instead of Kender having a meltdown.  You can watch A’Kos make Kender smile.  I’d rather it didn’t happen, but you might even see Kender get away from me and A’Kos track him down.  A’Kos is working whenever we are away from home.

Other service dogs’ skills may not be as patently visible.  In a free and voluntary system, we would still have our dog from 4 Paws for Ability with our certification and identification cards, as we do now.  We would still provide phone numbers for businesses to contact 4 Paws for Ability if they had questions.  Many libertarians foresee the kinds of ratings systems used on Amazon and eBay expanding to cover more and more kinds of businesses and services, so that you could hop online and see what kind of ratings 4 Paws has, whether they are legitimate or have been labeled as an ID factory.  You could train your own dog, certainly, but your self-issued certification would need to have some backing by a third-party with a reputation for valid certifications in order for anybody to truly respect it.

And I think I would be more okay with that system than the one currently in place.

Happy Birthday, Kender!

20140722_185842Today is Kender’s sixth birthday.  I don’t think he understands what that means.  He screams no, covers his ears, and walks away if we say, “Happy Birthday!” or try to sing.  He’s never been able to say, “I’m (xx) years old.”  He doesn’t talk about his birthday, he doesn’t ask for a party, he doesn’t spend the whole year planning his party and begging for presents, like all my other kids do.

I thought about having a party this year anyway, but I never planned anything.  Instead, I went by the store today and picked up all his favorite things for dinner, a strange Kender-only mishmash of junk food like macaroni and cheese and chicken nuggets combined with blueberries, salad, celery and cucumbers.  I got some cupcakes, too, telling myself that it was not cheating, he doesn’t care, even the other kids don’t care, they just want cupcakes and don’t care what kind or who made them.  We’ll all have dinner together, and then we’ll sing Happy Birthday to Kender and eat cupcakes.  I’ll dig up at at least one candle to light, but we have to be careful.  He’ll lean in too close and risk setting his hair on fire, and he doesn’t fully understand blowing out the flame yet.

I haven’t gotten him any presents yet.  Neither has anybody else (aside from a savings bond, something he can’t see, touch, or understand), not even the grandmothers.  My present to him this year is clearing and organizing his room, though he may or may not realize it.  I wanted to get him a light table, too, but haven’t managed it yet.  He’s already been exploring the toys I left in his room more, pulling out some special books and playing with the blocks.  He dumps things, too, and we rush in to pick them up.  I’ve gotten him to help with picking up once or twice.

It’s hard not to compare him to other kids.  Six-year-olds are heading off to kindergarten or maybe even first grade.  They know how to read and are working on writing.  They can do basic math.  They can tell you their name and address and phone number and show you the way to their house.  They play games like tag and softball, they ride bikes and scooters, they have favorite movies and books.  Not Kender.

For Kender, we celebrate how much he is talking, how he will frequently answer questions like “What is that?” or “What are you doing?”  We’re happy on days when he doesn’t scream and throw furniture or bang new holes in the wall.  We ask for a kiss or a hug and hope for an outstretched cheek instead of a scream.  We comb his hair and scrub his body, brush his teeth and fasten his shoes.

This year, I hope he will eventually be able to sit with me and listen to a story, show some interest in the words on the page or some indication that he is comprehending what he hears.  I hope we can start talking about shapes and textures, maybe even colors and numbers.  Goals and expectations were always my least-favorite part of the dreading IEP process when we were still getting services from the schools.  I don’t expect him to be reading and writing and playing cooperative games by the end of the year, but I don’t have anything concrete in between that I expect him to do.

I’ll just keep on doing what I’ve been doing for six years: keeping Kender safe, giving him love, and doing my best to create an environment that he can learn and explore in…and hoping someday to get the keys to unlock the little boy inside that I’ve never really been able to talk with.

The Kender Report

It’s been 2 months since we first brought A’Kos to stay with us.  It’s time for an update on how things are going, and things are going amazingly well.  A’Kos has blended right into the family.  Perhaps I’ll be a little more resentful of taking him potty when it’s 20 below outside, but for now I’m okay with it.  Kender gets more comfortable with A’Kos every week.  He’s finally learning to enjoy throwing things for A’Kos to fetch.  He particularly likes throwing A’Kos’ hard bones because they make really neat noises on the hardwood floors!  Today I even got Kender to give A’Kos his treat at the end of our daily practice track, which was a big step forward for Kender.

A'Kos with Liam, Jarod, Kender, and Caitlin, taking a bench break while out on a hike

A’Kos with Liam, Jarod, Kender, and Caitlin, taking a bench break while out on a hike

For the most part, having A’Kos along makes getting out and about with Kender much easier than it used to be.  When I need to fill out forms or spend time at the checkout, Kender will tend to lie down on A’Kos at my feet while waiting.  Where before we had to drag Kender by the hand or carry him (a mightier task by the month!), now all we have to do is say, “Grab your handle, Kender!”  Kender grabs his handle and we can take off at a normal walking pace.  Normal walking pace…that in itself is amazing.  Also, with the mobility harness Kender doesn’t need to use his cane.  We didn’t realize what a relief it would be for Kender to not have his cane in hand when he has a meltdown!

Kender and A'Kos exploring the new light exhibit at Impression 5

Kender and A’Kos exploring the new light exhibit at Impression 5

Last week, we went to the local children’s museum.  Although I used to be a regular visitor to children’s museums when the other kids were little, we haven’t made many trips with Kender.  He would get fixated on just one spot, play too roughly or inappropriately, scream when we tried to redirect him or leave.  With A’Kos, I could lead Kender from exhibit to exhibit.  Anytime I saw him getting stuck, I’d just say, “Come get your handle!” and we’d be off to the next thing.

When we go to the park, A’Kos waits patiently while Kender plays on the equipment, frequently getting plenty of attention from the other children.  If Kender starts to wander off, we go get him and bring him back.  When it’s time to go, again all we have to do is go to Kender and say, “Get your handle!”  No kicking and screaming.  Well, not much, anyway; no more than any other kid!

Some things are still challenging.  Kender has very strong memories of the place where we’ve been holding our church rituals and the people involved.  This makes A’Kos a less effective anchor and distraction.  Kender is accustomed to wandering about during ritual and playing with lights and fans, or being held by one of his sisters while I work as a priestess.  At Litha, he didn’t want to sit with A’Kos while we were drumming.  At our Full Moon this month, he kept asking for Tamara whenever I would pick him up or steer him away from the altar.  Since we only hold ritual once a month right now, it’s going to take a while to work out how the Kender-A’Kos team needs to work on circle.  We’re very grateful for our understanding and forgiving church family while we work through it!

Aside from A’Kos’ trained abilities for tethering and tracking, having him available as a companion is making a huge difference in Kender’s development.  Someone in our church who only sees Kender every couple of months came up to me this weekend and asked when Kender started talking, because they’d never seen/heard him talk before.  Kender has started talking about things that recently happened, things that are about to happen, and things that other people are doing.  He’s saying hello, goodbye, and thank you, appropriately and with names.  He sat in the living room with us to watch a movie when the girls had a sleepover.  Tonight, he asked for more dinner after eating what was on his plate, handed me his plate, and said thank you when I brought it back. (You’d have to have eaten dinner with us recently to understand how huge that was!)  It’s wonderful to see so much growth in the areas of communication, social interaction, and abstract thought, things that I’ve been waiting to see for so long.

Next week, Kender will be six years old.  I think his seventh year is going to be the most amazing yet!