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.

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!

Unspoken Rules

A conversation with some other moms with spectrum sons reminded me of my early experiences in the workplace.  My first real full-time job was working as a secretary for an intellectual property law firm outside of D.C.  I started out as a temp, then got hired full-time to be the primary secretary for two younger lawyers as well as the backup for the entire firm.  For the first few months, I was regularly in the office until 7, 8, even 9 at night, trying to get all of the days’ assignments completed.  I had been told that my job was salaried, with no overtime, but I had also been given a logbook so that extra hours could be taken as comp time.  I dutifully filled it out every day. Poor Brian would get off work and be waiting for me to finish and go home.  Finally, the office manager took pity on me, and explicitly told me that finishing all of my assignments every day was not expected of me.

Yes, I had to be told that it was okay to leave some work unfinished for the next day.  I’ve had problems with that in my personal life, too.  I use lists and routines to help keep myself in order (or else I’ll do things like forget to brush my teeth or wear a bra!), but then I get stressed about not finishing everything every day.  It’s kind of a “damned if you, damned if you don’t” situation.  In the case of work, though, I had just gotten out of school, with the expectation that an assignment is to be done that day, unless it explicitly has a later due date set.  I just assumed the same was true in the workplace, and it never occurred to me that there might be unspoken rules here that were different.

It never occurred to my supervisors that I might need to be told those unspoken rules.  Rules like:

  • Don’t do your job too well.
  • Don’t wear a shirt with the shoulders cut out.
  • Don’t try to take any personal days too soon.
  • Don’t keep your desk too neat.
  • Don’t try to help the firm if it falls outside your job description.
  • Don’t try to learn new things if the skillset is above your pay grade.
  • Don’t make jokes.
  • Don’t complain loudly when your food is eaten out of the break room refrigerator. Especially not by mass email.

I don’t know if those are all the rules, or if that’s exactly how they go, but based on the times I got in trouble, got lectured, etc., those are the rules I broke.

There are other places where this has tripped me up.  At least in the workplace, my first office manager in particular learned that I needed to be explicitly told what I’d done wrong when I broke one of the unwritten rules.  There seems to be a whole set of unspoken rules regarding interactions with other women and other mothers that trips me up on a regular basis.  I’ll get shut out of groups without the slightest idea what I’ve done wrong, and nobody ever comes back and says, “Look, you can’t do [x, y, z] around us, and that’s why we’re now going to shun you and never speak to you again.” They just skip to the shunning.  Kind of like high school.

Things are getting better. The neurodiversity movement, TV shows like the Big Bang Theory, the push for mainstreaming autistics, even the spread of the goth subculture, all of these have contributed to a little more understanding in society at large of those of us who don’t get or follow those unwritten rules.  That could just be the subset of our society that I currently move in, which admittedly has a high density of geeks, nerds, and spectrum issues.  I’d like to think, though, that somebody getting thrown into the workplace as an aspie today, with a diagnosis and an understanding of how they see the world differently…I’d like to think they’d have an easier time than I did.