Kender’s Match Form, page 3

This is the last page of the form I’ve been filling out the past couple of days.

What type of hair would they like?  I chose “furry/soft” because it’s closest to the cats that he knows and pets and sometimes uses for pillows.  Otherwise, I really don’t know.  He hasn’t shown an aversion to any particular type of dog fur, and I can’t exactly ask him!

What breeds of dogs do you like and why?  I like big dogs best.  They always seem calmer and better to be around when they are well-trained, and they seem stronger and healthier to me.  I like dogs you can pet, that can warm your feet, that you can hug without breaking, that can run with you.  Breeds that come to mind are German shepherds, labradors, retrievers, Great Pyrenees, and mastiffs.

What breeds of dogs don’t you like and why? I don’t like small, yarky dogs.  They seem delicate and nervous, like they are afraid of the whole world.  I don’t like chihuahuas, toy poodles, or pomeranians.

Do you have dogs in your home? Not currently, although we have in the past and occasionally we watch my mother’s dog when she goes on vacation.

Are there other pets in the home? What kind and where do they live (inside, outside, in a cage, if in a cage are they ever loose in the home)? We currently have two cats and a Jersey wooly bunny.  The cats are primarily indoors but sometimes go outside.  The bunny lives in a cage; she comes out for playing and brushing occasionally, but only with constant supervision.

Is there anything else you would like us to know? Kender is blind, so the “feel” of the dog tactiley is important. Kender walks outside a lot, especially in the summer, so a dog that can keep up would be great.

Next up is the video.  My plan right now is to create a sort of screenplay, then fill it in with the video I have and take any new video that is missing.  I’ll set up the screenplay as its own page off Kender’s and just blog about the changes and updates.  Pending approval from anybody who happens to be in the video, I’ll post it all on Kender’s page when it’s done.

Kender’s Match Form, page 2

Yesterday, I started work on Kender’s “Making a Good Match” form for 4 Paws.  I’m posting the process of filling out the forms and making the video here for two reasons:  1) to keep me on track by reminding me to do something every day, and 2) to provide a forum for folks to offer input or help on the process.  Today is page 2 of the match form.

Has your child had contact with dogs? Frequently.  My mother has a small dog, one of my girls’ friends has a toy dog, and there are other dogs in the neighborhood.

How does your child react to dogs? I would put this somewhere between “acknowledges” and “makes a little contact”.  He resists any urging to say hi to a new dog or pet a dog, often trying to hide.  My mother’s dog he will tolerate instead of running away from, and will occasionally try to engage in play. This usually doesn’t end well because Pixie doesn’t understand Kender and just barks, and he thinks that’s funny.

Is your child very physical with dogs? Not really, mostly because he has never been around one long enough to be comfortable touching and petting the way he will do to the cats. Even Pixie staying with us for a week at a time isn’t quite enough.

What does your child like about dogs? I circled “play with them,” “lay with them”, and “lay on them,” because when I think about it, I can recall Kender doing that once or twice with Pixie, using her belly for a pillow.  He likes to get in her face and hear her bark or yip, too.

My child likes to touch/play with: I circled “mouth” and “fur”, mostly tummies, because that’s what he plays with.  I should also circle “tail”, I guess, since he thinks it’s pretty funny to get tickled by tails.  He likes it when the cats do it, too, and he’ll play with my braids the same way.

Anything else they like about dogs? The noises they make. Kender really likes sudden, strange, loud noises, and always has.  This is unusual for an autistic child, but with Kender I think it is probably more related to blindness.  As a baby, Kender reacted to me making strange noises with my voice the way another baby would react to mommy making funny faces.

What doesn’t your child like about dogs? He doesn’t like being jumped on and having his face licked.  That will make him completely shut down and refuse to face a dog.

Anything else they do not like about dogs?  Unpredictability, I think.  I think a calm, well-trained dog would be better for him, and I think he would enjoy active play once he knows the dog and knows what to expect, but he wants it slow and on his terms.

Would you child enjoy giving treats? Throwing a ball? Petting and Snuggling? Yes to all of these, once he is shown and gets used to the individual dog.  I need to do more of this with him and Pixie, to get him used to the idea and see how he responds.

What kind of dog best suits them? “Slug” is the first option here, which I find absolutely hilarious.  I chose both “Calm” and “Playful”, because Kender needs a calm dog most of the time, but would enjoy a dog who can be playful within boundaries when Kender initiates the play.

What size of dog best suits your child? Here I chose “Very large” because Kender is pretty strong, and based on his siblings and his birthweight there is a good chance he will be a big kid as he grows.  He will need a big, strong dog to complement him and provide the calming and tethering skills.

Kender’s Match Form, page 1

Kender will meet his service dog on May 12, 2014.  In order for the trainers to do the best job possible of training a dog specifically for Kender and his particular needs, we have to fill out an extensive match form and make a video for the trainers.  The video needs to show all of Kender’s behaviors and how he acts in different circumstances.  We have to get it done and in to the trainers by four months prior to our class, or mid-January, 2014.  I’ve been taking video here and there since July to try and prepare for this, but now that I finally have the paperwork and am facing the deadline, I still feel overwhelmed.  I’m going to document the process here, and if anybody wants to help out at all, it would be greatly appreciated, whether you have experience making documentary-type videos or whether you have some input or suggestions on my responses.

The first step is filling out our “Making a Good Match” form.  This is a brief outline of what’s also going to go into the video.  It starts out with basic demographics like name, age, and height, and then it moves on to the more detailed stuff.  Pretty much everything in these questions is going to need to be in the video.

How active is your child? He runs.

If you are getting a dog for tethering purposes, please tell us how resistant your child is on a scale of 1-10 when being held (hands or otherwise) in public, i.e., does he respond right away to your restraint (1) or fight you to get away (10)?  8

20131031 Kender Doctor Who

Kender with his cane at Halloween 2013.

Uses adaptive equipment to get around? A blind mobility cane.

How does your child communicate?  He uses words and phrases when he knows them.  He frequently shows dissent or displeasure by screaming and/or crashing to the floor.  He shows happiness by jumping, running, and flapping his hands.

Does your child make unusual verbalizations?  He sings pop music songs a lot, using vocal exercises to mimic instrumental sections.  When he says “no”, he often screams it.  If he doesn’t get something he asks for, he will repeat his demands over and over at the top of his lungs.  He makes loud beeps and hums, and he likes to mimic all sorts of loud environmental noises, including trains, mixers, blenders, power tools, alarm clocks, door alarms, leafblowers, and more.

Do they scream, squeal, or make loud noises?  Yes, yes, and yes.

Does your child engage in verbal aggression, such as yelling at people or cursing?  Yes, he will get in my face and scream or shout repeatedly if I don’t immediately give him what he wants.  “BATH! BATH! TAKE A BATH! BATH!” “I WANT CHIPS AND SALSAAAAAAAAAAAAAAAA!!!!!!!!!!”

Does your child have odd physical behavior or movements?  Yes, he flaps his hands and has this odd trot-gallop-thing he does when he’s happy.  He spins and lies on the floor a lot, kicking things or slamming cabinets and doors.

Describe: Self-stimulation?  He rocks a lot when he is seated, in a chair or in the car, banging his head against the back of his seat, sometimes singing along.  He bounces and flaps his hands when he is happy or excited.  He is an eye-poker, a blindness behavior we would like to prevent if possible as it causes sunken eyes.

Odd movements?  His gait when he runs from happiness is like a cross between a trot and a gallop and a skip, very unusual for a human.

Self abuse?  Mostly this would be the eye-poking, although sometimes he will bang his head on the floor when he is frustrated.  This has left carpet rash on his forehead before.

Aggression towards others?  Kender greets everybody and everything by slapping them on the legs or the side, whether it’s people, cats, or dogs.  He will “sneak” up behind me and smack me on the back as hard as he can, out of nowhere.  He will hit somebody who is holding him over and over, sometimes leaving marks on my arms and legs.  He thinks it is funny to throw things down the stairs, and that includes cats if he can catch one, another behavior we’d like to stop.

Makes Me Crazy

Back in July when I first got my hypermobility diagnosis, I asked Dr. Beals if she would be willing to see and treat my children.  She said that she doesn’t normally see children, but that she would make an exception in our case in order to keep us all under one roof as we learn more about our variant of the disorder.  I called Dr. Joe‘s referral specialist, requested the five referrals to Dr. Beals for suspected hypermobility, and waited for the appointments.  Dr. Beals has a months-long wait list for new appointments, so I expected to be waiting a while.

Last month, Dr. Beals’s office staff called me and said that she had changed her mind.  She didn’t want to see my children herself, but she wanted to send us to University of Michigan’s pediatric rheumatology department.  I asked a lot of questions, because I was very disappointed to be splitting the family up and traveling across the state like that, but Dr. Beals’s staff reassured me that she had referred to this clinic before, and they would treat my family the same way Dr. Beals herself would.

The next three weeks were spent playing phone tag with Dr. Joe’s referral specialist, with voice mails and missed calls and her not even being in the office when I came in with my kids.  Finally last week we synced up and she got the referrals going to U of M.  This morning, I got a phone call to schedule appointments.

The phone call was from U of M genetics.

Baffled, I tried to find out how we’d gotten here.  Apparently a Dr. Fleck in pediatric rheumatology decided that we needed to go to genetics instead.  The guy I spoke with in genetics said that they don’t really do treatment, so we’d have to bounce back out of their office anyway, and when I mentioned that I had one child already in need of chronic pain management he said that would be yet another clinic.  Now we’re looking at taking five kids to three clinics halfway across the state, and none of the clinics are going to see everybody on the same day like Dr. Trese does.

Brian called while I was on the phone, and when I called him back to explain all this, Kender was eating his oatmeal and singing/humming Nickelback’s Burn It To The Ground.  Right when I finished the explanation, Kender suddenly busts out really loudly with, “That shit makes me bat-shit crazy!”

Yes, Kender. Yes it does.

What I really need right now is to get Dr. Beals, Dr. Kozlowski, and this Dr. Fleck to get on a single conference call and hash out with me what everybody is thinking and what needs to happen.  We used to get this in the NICU.  We got enrolled in a study when the triplets were born about coordination of care, and as part of that study, once a week we got to sit in a conference room with all of the various doctors and specialists treating the triplets.  The doctors explained what they were doing and how the triplets were handling life, we got to ask questions, and everybody left undoubtedly on the same page.

I think we could use a little of that kind of coordination today.

Socially Acceptable Venting

I’ve been having a pretty tough day today with Kender. I’m taking advantage of the few brief moments here and there when he is silently pouting to type this out.  I need to get this out, even (or maybe especially!) on a bad day like today, because sometimes I feel like I have no voice.

We have made and still make a lot of alternative choices in our lifestyle and our parenting.  We chose to have children with a disabled parent.  I used medications to reset my hormones and restore my fertility instead of continuing to use fertility drugs.  We chose out-of-hospital births. We chose breastfeeding and cosleeping, cloth diapers and rags.  We chose to use convertible carseats  from the beginning instead of carriers, and slings instead of carriers and strollers much of the time.  We chose natural medicine as much as possible, with personalized vaccination schedules and avoidance of antibiotics.  We chose to homeschool, even when we found out our children had disabilities.

Every single one of those choices is outside of the mainstream, and so whenever we are having trouble with pretty much anything, those are the first things that people suggest we change.

It doesn’t seem to matter if the problem would even be fixed by the solution suggested.  To people who do not share our choices, our choices are the problem.

It reminds me of the problems that fat people face when going to the doctor.  No matter what their health complaint is, they are told the answer is losing weight.  I’ve been told this myself.  I’ve been told that I should lose weight in order to fix a medical problem that causes weight gain…now there’s an infinite loop for you!  Other people have been told to lose weight to fix anything from strep throat to broken bones.

If Kender were in the government school system, it would be completely acceptable for me to complain about the IEP process, about the school refusing to teach him Braille or to use a cane, about how many medications he needs in order to be nice and quiet and compliant, about how getting the schools to actually provide him with an education is a full-time job.  When we homeschool, though, we’re not allowed to complain about how expensive Braille materials are, or how difficult it is to contain him, or about being tired, or anything else.  No matter what my difficulty is, to some people the answer is that he should be in school.  As if somehow that would make all the problems go away, rather than magnifying them or replacing them with an entirely different set of unsolveable problems.

When our lifestyle choices are questioned, there is no consideration for our individual concerns.  There is no consideration for where we live, our past experiences with the establishment, our goals in life, our children’s unique needs.  Everything comes down to, “You are different, and you do not deserve any sympathy or help until you conform and become like everybody else.”  Every problem is reduced to some choice that we’ve made that is obviously the source of all our problems.

Fat and sick? You must become the socially-acceptable Not Fat before you can be treated for your health problem.

Libertarian and lost your job? You are not worthy of charity if you do not support government programs.

Homeschooling a disabled child? The only possible solution is government school.

Trying to find out what makes your child tick instead of medicating him? Sorry, does not compute.

Dealing with a difficult situation and have no support system? You need to change your religion so you can go to church and get help.

Do people who respond this way have any idea of how demoralizing it is to be told these things? How dehumanizing and impersonal it feels to be told that you, your personality, your preferences, your life, your SELF are the source of all your problems?

It’s no wonder that some of us draw into ourselves, that we withdraw from online message boards and real life support groups.  When every time we reach out, we are slapped in the face, eventually we are going to stop reaching.

Another Week

Time just seems to fly by sometimes.  This week has been so busy, with Brenden’s broken finger and things here and there and everywhere.  So much has happened.  I’ve gotten things accomplished, if not the same things as last week.  I fell down skating on Sunday, and so I’ve been horribly sore all week, every muscle aching.  Still, I kept going. I went to Foster on Tuesday. I did shopping on Monday for the Vikings feast even though it ended up getting postponed. I skated on Sunday and Wednesday.  I got the girls started on ninth grade math and reading.

I started doing Circle Time again with Jarod and Kender.  Kender just loves circle time.  I decided to start using my main altar candle for Circle Time, instead of separate candles for them.  We bring my candle to the table and light it, sing our songs, and when we close, instead of blowing it out we move it to my altar, and I do my regular devotions at that point.  This works well to give them a real flame, to connect them with my altar, and to give me a concrete reminder to spend this time with them.  What I would like to do next is find a way to incorporate calendar work into Circle Time in a way that Kender can access.  All the Braille calendar systems I’ve found are so expensive, but so far I haven’t found anything better. I’m open to ideas, though.

I’ve also started reading to Kender again, and after a couple of days he has started sitting still for it and even trying a bit to read along, feeling for the Braille again like he used to.  I hope that keeping this a daily habit will get him relaxed and happy around books again, and maybe we can move forward on language and reading skills.  If not, it’s still cuddly time in my lap, and that works, too.

I did a pretty good job this week of cooking dinners, working with things that were in the cabinets and the freezer, getting creative and keeping the shopping to a minimum.  I’d like to keep that energy going and see how far I can stretch it, but hitting payday sure made getting some convenience food awfully hard to resist!

We’ve been working on getting our two remaining cats to stay inside.  That way, if we get a new kitten, hopefully we won’t lose it outside the way we did Darwin.  It’s hard to do this because the blind folk can’t tell if they’ve let a cat out, but we keep trying.  We’ve gotten more catnip toys and spent more time actively playing with the cats, instead of just petting them.  We’ve also gotten out more treats, and anytime we can distract them from the door or get them to come right back after dashing outside, we give them treats.  The sticking point seems to be the litter boxes.  Max and Teddy Bear are convinced they need to go outside, and refuse to use the litterboxes.  I can’t decide whether to keep fighting with them over it.

On to the weekend, with a cake to decorate and more planning to do.

This week was great because…

Similar to the ideas of focusing on the roses, or of enumerating things to be grateful for, another idea for improving positive thinking is to focus on what has been accomplished and what has been good.  Fat Man has used this idea pretty successfully himself, and it’s been floating to the surface of my mind this week.

This week has been good because I went skating twice, and skated so hard that I was sore the next day.

This week has been good because every day (that I’ve been home; Foster doesn’t count!) I have gotten my basic daily chores done.  I’ve done laundry.  I’ve cooked dinner.  I’ve been writing.  I’ve been practicing with my bodhran. I’ve been picking things up.  I haven’t been able to get this much done this consistently in months, maybe years.20131025 Kender's big check

This week has been good because I finally made a trip to the bank to deposit Kender‘s donations, and he showed off his giant check to the tellers.

This week has been good because I learned more new things for my Vikings class, and learned more about a new craft that might help keep my hands and feet warmer in the winter.

20131108 Midnight in cageThis week has been good because I caught Midnight escaping her cage, and I moved her and her things into Pixel’s old cage before Teddy Bear actually caught her and decided she was tasty.

This week has been good because I discovered my pie crust recipe makes an excellent, tasty wrapper for pasties.

This week has been good because I played Othello with Liam and Jarod, and I got to watch Jarod learn how to think ahead and anticipate my moves.

This week was great.

IEP Torture

We had reasons for homeschooling from the beginning, reasons that had nothing to do with disabilities, especially since we had no reason to expect any disabled children. (Remember how the doctors told us Brian’s blindness was not genetic?) We had reasons like my experience being the smart one, the geek, the outcast, the loner, the one who was picked on.  We had reasons like Brian’s experiences with exclusion and bullying and how he resolved them (with violence, not recommended).

What I hear from other parents of autistic and blind children and their dealings with the government school system just makes me more determined to keep my children home, no matter the cost.

I have had a touch of dealing with the government schools and the IEP process myself.  When we first started suspecting that Caitlin was on the spectrum, we approached the local school district for an evaluation, wondering if some kind of therapy would be beneficial to her and help her bridge that social-interaction gap.  We were told that she was on grade level for all her academic accomplishments, and therefore she didn’t, and never would, qualify for any services no matter what her disabilities were.  Later, when she was in third grade, we put the triplets and Liam into school for about six months to see if it made my life any easier.  At that point Caitlin had her official Asperger’s diagnosis, and again I approached the school requesting services to help her with her social and interpersonal skills, to help her integrate and belong.  I was told she didn’t need any help, but that they would keep an eye on her and let me know if she did.

As much as ten years later, I am still finding out from Caitlin about the things that happened to her that I was never told about, despite my explicit requests for an IEP and services.  The times she was actually pulled out by the special ed teacher along with the deaf and developmentally-delayed children.  The times she was excluded from recess, the bullying she put up with.  None of this was ever communicated to me by the school or her teachers, who apparently thought it was okay to change their stance and suddenly provide some kind of services without consulting me first.  I may never know what all happened to her, what all they did to or for her, because she really was unable to tell me about it at the time.

The next time I dealt with IEPs and government school services was when I found out I had blind children, especially with Kender.  I found out that all the teachers for the visually impaired (TVIs) and orientation and mobility (O&M) teachers had non-compete clauses in their contracts forbidding them to do private work.  Beyond that, they were so overloaded and overworked that most of them couldn’t have taken on private students even if they had wanted to, and the schools were laying off and buying out more teachers every year.  When we sat down to do IEPs for Jarod and Kender every six months, the process was excruciating, requiring all sorts of detailed evaluations. Kender had to be marked off on developmental skills checklists that were completely inappropriate for a blind child (recognizes faces? knows his colors? follows along with picture books?).  As Kender got older and it became obvious (should have been from the beginning) that we were going to insist on homeschooling him even though he was blind, the teachers stopped really trying to provide services and instead spent all their time trying to tell me all the reasons he should be in school.

I hear so many awful stories.  IEPs that are routinely broken by the schools. Teachers who belittle and abuse their students.  Children with autism and sensory processing disorders who are restrained with force. Visually impaired children who are denied access to Braille instruction because the TVI doesn’t even know it anymore. Visually impaired children who are denied access to O&M instruction and how to use a white cane because the school doesn’t want to deal with it. Autistic children who are passed from grade to grade with no real instruction, then given a “certificate of completion” instead of a high school diploma before being abandoned to spotty adult mental health services.

What makes me so sad and furious is all the parents who believe that their only option is to work within this system that seems so determined to thwart them and abandon their children.  Parents who have been convinced that only the government and its specially-trained certified instructors are capable of teaching their special-needs children, even though the evidence shows they are often neither fully trained nor willing.  So many parents believe that teaching their normal, healthy, on-target children is a job that can only be accomplished by professionals.  It’s even worse among special-needs parents.  So they believe they have no choice but to stick with this system that is broken, and because they are a captive audience, the system has no incentive to improve services.  It’s a vicious cycle, resulting in a downward spiral of worse services and worse education, turning out more and more children who are incapable of functioning as independent adults, and neither side is willing to break out.

My only thought when I hear parents telling these IEP horrors stories is Why? Why do you stay with this system? Why don’t you just pull out? Why would you sacrifice your children to this game the government schools want you to play?  I don’t understand staying in.  I’m out, and I will stay out.  I won’t play that game.

The Kender Report — Kender Does Zumba!

An amazing thing happened yesterday.  Kender participated in a class!

A friend of mine teaches lots of Zumba classes, and she offers several at the homeschool co-op in which we participate.  She encouraged me to sign Kender up for her youngest Zumba Kids class on co-op days, even if all he did was curl up and listen to the music like he’s done before.  Honestly, I am not going to spend $35 for Kender to listen to music.  I can provide that for free, and we do it a lot at home.  I said that we would try it out, though.

At first, it was exactly what I expected.  He didn’t want to go in the room. Then he didn’t want to leave my lap.  He wanted to be held, he wanted to curl up on the floor.  I kept encouraging him to get up and go out there.  I walked him over and tried to lead him through a limbo game, but that only got him shrieking.  I sat down and let him wander, assuming child’s pose in front of the speakers, checking out the tumbling pads in the corner, playing with the blinds.

Then the miracle happened.  Kender stood in the middle of the floor for a minute, and then slowly started imitating the teacher’s movements, stepping back and forth, spinning around, waving his arms a bit.  It only lasted for part of the song, but it had me and her both nearly in tears, it was so amazing to see.  Kender went back to curling up and listening for a while, but a couple songs later, after some other kids had come into the class, Kender opened back up and copied them for part of a song, crawling around on his hands and knees and spinning.

After the class, I continued to see more interaction and tolerance of others.  We went up to the community room, where the other kids had already gotten into the toy box we bring full of balls, puzzles, Perplexus, legos, and more.  He spent well over an hour hanging out at the toy box with the other kids, pretending some blocks were phones, singing songs, etc.  Normally he won’t spend more than a few minutes playing that close to the other kids, preferring to wander around the room and climb on the furniture, stealing food, playing with the window blinds and the doors.  Again, an amazing and really cool thing to see.

When we went to leave for the day, we had to walk past the room where the Zumba class had been.  I had my hands full with a box, Kender was right behind me, and the van was parked right outside the door, so I hurried out and tossed the box in the van, expecting Kender to keep mosying on down the hall.  Instead, in the 30 seconds or so I was gone, Kender found the Zumba classroom (which now had a non-homeschool dance class starting), gone inside, plopped himself down on a mat with the other little kids, and the teacher had called the office over the intercom to report the little blind child who had wandered in!  Yet another thing I would not have expected him to do, especially the part where he paid attention to the other kids and joined them on the mats.

The rest of the afternoon, we heard bits of Zumba songs in what Kender was singing.  Last night, when I asked Kender to go tell Daddy about his Zumba class, this is what happened:

Needless to say, I have no problem whatsoever spending the $35 to keep him in the class for the rest of this term.  I am excited to see what he does next!

It’s Not Offensive to Ask for Proof

The tale of Disney revoking their Guest Assistance Card program has been making the rounds this week, showing up in my feeds multiple times.  Responses range from outrage at Disney to outrage at the frauds that abused Disney’s kindness.  I see nobody addressing what I think is the root problem here: People who get outraged at being asked to prove they are disabled.

I have been partnered with a blind man for almost 23 years.  When we went to amusement parks like Six Flags, we were sometimes able to go in through the exit line, although not always.  We’ve almost always had a handicapped placard or plate for our vehicles.  When we visited Disney World ourselves with our family a few years back, we did not always use the accommodation of going through the exit or otherwise bypassing the line.  We saved that for times when we wanted to take Kender onto a ride, or when my husband might need special help getting on and off a ride safely.  Other times, we waited in line like everybody else, just like I do not park in the handicapped spots when I don’t have handicapped people with me, even though I have permanent plates on the van.

My husband has always appreciated the extra accommodations.  Imagine having to wait in those long lines at the parks with a blindfold on, so you can’t see all the TV screens, the extra pictures on the walls, the previews of the rides, etc.  Now imagine parking in a crowded parking lot and then trying to find your car again blindfolded.  Imagine going someplace where the parking is out in a field instead of a paved lot, and trying to walk blindfolded across the uneven terrain for a half mile or more to get to where you are going.  Now that we have blind and autistic children as well, we appreciate the opportunity to request a front-row seat where our family will actually be able to see a performance, or to skip waiting in an hour-long line when it’s already taken an hour for us to coax our children from the entrance to that first ride.

We recognize that these accommodations are special and unique, that they are something not every can experience, and that workers and business owner have to go out of their way in order to provide them. So we have no problem with being identified as blind in order to access these privileges.  If blindness is not enough in some circumstance, I would have no problem with being asked to provide proof of Kender’s autism in order to prove that he needs a particular accommodation.  I will probably request something of the sort from Kender’s doctors to carry around with us once we get his dog, so that I can easily answer questions and prove our need for the dog. If somebody approaches us upset that we are using a handicapped spot when we do not appear handicapped, we have no problem explaining that we have blind people in the car.

I have seen around me in society, especially among many disabled people and their families, a sense of outrage at the thought of being asked to provide proof of need.  The impression I get is one of, “How dare you ask me to prove my child is autistic?!  How dare you ask me to prove I need this service dog?! You must take my word, or you are infringing on my rights!”  This attitude has forced businesses to accept all claims of need and disability, no matter how absolutely ludicrous they are on their face.  Because no questions are asked, it is possible for anybody to fake a disability and obtain the special accommodations for themselves and whoever is with them.  Anybody can drive Grandma’s car somewhere and park in the handicapped zone even when she is not with them, because nobody will dare question them.  Anybody can go online and buy a service-dog vest for their golden retriever, and nobody will dare question their ability to now take that dog everywhere.

All because the disabled were too offended at the thought of being identified as disabled.

Is it any wonder that Disney is discontinuing its previous disability pass program? It is public knowledge that people have faked disabilities in order to get the pass.  It is public knowledge that people have hired disabled people to go to the parks with them and get them past the lines.  Even the workers at the parks know this, but even when they know that somebody is faking it, they’re not allowed to ask.  They’re not allowed to offend anybody by requiring them to prove they are disabled in order to access special accommodations for the disabled.

It’s time to stop taking offense and start standing up proudly.  My husband is blind. My son is blind and autistic. More of my children have reduced vision and/or some level of autism.  This is who they are. Why should we be offended at owning a part of ourselves? Taking offense at being identified as blind or autistic seems to imply some kind of shame about being identified as disabled.  Why should we be ashamed of who we are?

The fact is that we are going to lose everything if we don’t own this.  We need to stop getting so gods-damned offended at being asked for proof. We need to stop being so afraid of offending others that we don’t question even obvious abuses of accommodations.  Go ahead.  Ask me why I’m parking in that handicapped space.  Ask me why my son has a service dog.  I’ll happily prove it and explain.

And the next time I see somebody admit to my face that they are using Grandma’s handicapped plate to get special parking for themselves, I’m damned well going to call them on it. To their face.