The Frustration of Having an Invisible Illness

I think the hardest part of parenting a special needs kid is negotiating between him and the rest of the world.  Which mostly means between him and whatever school he’s going to and whoever he is tangling with or having trouble with or pissing off or frustrating or wearing down.  I sometimes wonder if it would all be easier if his issues were visible.  Like if his anxiety manifested itself in more obvious ways such as hiding under tables all day or if his issues were physical, like if he was in a wheelchair.  Mental disorders and illnesses that don’t present themselves in any physical way are invisible except in the form of behaviors and it’s very difficult to be patient with someone who has impulse control issues who lashes out at you verbally who looks 100% bona-fide normal.  The constant urge is to have normal expectations of that person.  Which means you won’t take that shit from them and you lash back and punish and consequently make a tough situation untenable because you are NOT dealing with an averagely functioning brain and nervous system.

In spite of the fact that Max is going to a school supposedly super experienced and prepared to educate kids like him, they seem to be having plenty of problems with him and him with them.  It’s been MUCH better at this school than at the last one but I’m surprised at how often the teachers behave almost as stubbornly as Max himself does.  I’m surprised how often their way of dealing with him is obviously the worst way to deal with him.  Flexibility is absolutely key with getting the best out of Max (and I would have thought ANY child, but adults love to be rigid and with most kids I suppose it’s relatively effective).  Giving Max choices in every possible situation works much better than simply laying down the law and telling him he will obey.

That’s like waving your red cape dramatically in front of an agitated bull.

I’m frustrated and tired of it always being such an uphill climb negotiating between Max and the world.  Here at home things are pretty simple.  I know how to navigate the difficult moments and smooth over the frustrations we all have.  I know how to end a tough day on a good note.  I know how to reward Max for his awesomeness and talk to him calmly about his less than stellar behaviors.  I know how to avoid giving him the chance to dig his stubborn feet in over things.  Flexibility is king.  That’s also the main reason I’m still happily married after 19 years – flexibility is everything.

Last week Max had to watch “The Boy in the Striped Pajamas” in school and it was horribly disturbing to him.  It made his stomach upset (his anxiety messes with his stomach just as it does with mine) and he came home early. He was depressed and also full of rage that he had to sit through a movie and then see the main character die.  It didn’t help that that same morning he heard a horrible story from another student about how his two cats were killed, one of them dismembered.  It was a bad day.  Anyway, I was shocked that such a movie (one that I myself had determined not to watch) was shown to sixth graders.  I did the only thing I could think of, I emailed the teacher and told her how disturbed by it Max was and asked her to tell me, in future, what films she’s planning to show the kids so I could either prepare him for them or excuse him from watching them.

This riled the teacher up.  She let me know that no one else had complained about the movie being disturbing and that it was absolutely appropriate for the curriculum of sixth graders.  Basically, she let me know that we’re precious fragile people who aren’t normal and everyone else is perfectly okay watching a movie about a kid who dies in a concentration camp.  YES, I KNOW THIS ALREADY.  I explained that I wasn’t criticizing her for her choices but merely saying they weren’t appropriate for MY KID.  (I should not have let her know I was surprised she let kids watch a movie I thought would be too disturbing for myself, that was a tactical error for which I was instantly sorry).

She let me know that they were going to be watching “Grave of the Fireflies” next.  A friend had already warned me about this one suggesting that if Max found “The Boy in the Striped Pajamas” disturbing he should definitely not watch “Grave of the Fireflies”, a gorgeously animated film about two kids who die in Hiroshima.  The story starts with the death of one of them and is told by the ghost of the other.   I talked to several adults about this film and one of them was very surprised that a teacher would show this movie to children.  So I told the teacher that I didn’t want Max to watch this film after what happened with the last one.   I told her I would let Max decide for himself  on the condition that if I excused him from watching the teacher’s choice we would have to either do some reading about the bombing of Hiroshima at home or we’d have to watch a documentary.  Max chose to learn about that horrible event in the comfort of his own home with people he feels safe with.

We chose to watch the BBC documentary about the bombing of Hiroshima.  It’s a disturbing event in history no matter how it’s being told, but in documentary form there is a purpose of informing without the emotional manipulation of a movie.  What’s best is that the horrors we learned about were largely told by survivors.  Instead of hearing a story told by dead children it was told by old people who lived through it.  People who did not die in it.  That made a huge difference for us.

Yesterday morning was the morning his class was going to watch “Grave of the Fireflies” and I got a call from Max’s teacher.  She was angry at Max and at me.  Apparently it wasn’t enough that I told her in email that I didn’t want Max to watch that film but I would leave it up to him.  She expected a follow up official email excusing him from watching it.  I actually did send a hand written note with Max to school for this very purpose but Max forgot he had it.  So when he told the teacher he had permission from his mom not to watch the film, she said she hadn’t gotten an email from me excusing him so he’d have to watch.  Obviously he argued with her and made a scene because Max knew he had my permission, he KNEW he was right and dug his heels in.  The teacher getting mad apparently made him more belligerent.  This is typical of Max.  So the teacher called me to verify that he was excused, but not until she was mad and he was mad and everyone was mad.

How does this happen?  I made it very clear that I didn’t want him seeing the film.  With or without an official email excusing him I had already made my wishes VERY CLEAR.  Clear enough that she was not happy with me for questioning her choices in films.  And if she just happened to forget my very clear wishes, and didn’t believe Max either, why the hell did she not call me immediately?  Why did she wait until Max made a scene to call me?  The minute Max claimed he had my permission to skip the film and she claimed he didn’t is the minute she should have had the administrative assistant call me for verification of permission.

So now she’s mad at me because I sent an actual note and put the responsibility for remembering it on my child (she made a good point, that was another tactical error of mine) and apparently Max refusing to see the film made the other students want to know how come he got to get out of seeing the film and they all still had to see it?  She implied that I had created a lot of problems for her.  How hard can it be to explain to the other kids that Max parents don’t want him watching the film but their parents don’t mind if they do?

Would the teacher have been so put out if I had excused Max from those movies for religious reasons?  Or if his anxiety was more tangibly visible would she have felt so annoyed at me trying to protect him from more than he can handle?

If he spent most of his day hiding under tables I think she wouldn’t have felt defensive about my intervention.

My kid is academically gifted (when he applies himself, of course) but he’s  prone to depression and anxiety in a serious way.  Disturbing images and stories stick with him a lot longer and worry him and chew at his equilibrium, throwing it off-kilter.  He’s not a typical kid no matter how much he looks like one and mostly acts like one.  I feel like I have to spend an inordinate amount of time reminding people who should know better that he is a special needs kid and that means that he doesn’t always react to things the way other kids can be expected to and that if you are rigid he will be more rigid than you in response.

I don’t regret having spoken up about Max being disturbed by the film in school.  It’s unfortunate that it ruffled his teacher’s feathers but Philip and I are Max’s primary advocates and I take that role seriously.

It is through tough big decisions and a million seemingly insignificant ones Philip and I have made that have allowed Max to be the self confident kid he is right now.  The irony is that the better we do our job protecting our kid and treating his issues the more invisible those issues are to other people causing them to have unrealistic expectations of him.

When you have no legs there are tons of prosthetics to meet different missing leg scenarios.  Doctors fit your prosthetics to your body, they mold them just for you or they find the ones that work best.  Then when you have yourself fitted up no one asks you to run in a marathon.  If you do run in one you will be celebrated and held up as a hero for doing it but no one expects a person with prosthetic legs to run marathons.

Why do people expect those of us with brain disorders to just get over ourselves and be normal?  And why is it that when we are fitted with mental prosthetics (aka medications) we are judged as weak for not being able to function well without them?

How many people look at a person with prosthetic legs and think how weak they must be and ask how come they don’t just learn to crawl on their stumps and get over themselves?

Zero.  That’s how many.

6 comments

  1. Robin says:

    Wow that teacher must not be too bright. I can’t understand why People can be so cruel when it is their job to help these kids in the classroom environment. Can you and Phillip have a sit down. With her and talk more about coping with max on a daily basis. Even if you have to remind her daily, weekly or monthly. What ever it takes! I have always felt that as parents we are the best advocate for our children. We know them best and understand the limits they need or the challenges they need. Hang in there obviously max knows you are always in his corner and that is the most important thing!

  2. angelina says:

    This particular teacher is a nice lady but I’m definitely not happy with how she handled this whole thing. Obviously I made a couple of tactical errors myself which I need to keep in mind going forward. We did talk at the last parent teacher meeting about strategies for handling Max and his issues but in this case we were both taken by surprise for our own reasons.

    We do look a lot alike, huh?!

  3. Kathy says:

    This just pisses me off! She may be a nice lady but her discernment for what is appropriate for 6th grade kids to watch is broken. That movie rattled me for weeks and I’m 45. And I suspect many parents didn’t know, and still don’t know that their kids watched that horror flick. And so what if you’re the only parent who called voicing concern. So fucking what. Sheesh. I really hate that she has turned this into a sour situation, instead of working with you to meet the need of the child.

  4. Chelsea says:

    Oh boy, what a mess. I’m confused, does this teacher think that she’s teaching high school? When Sam’s teacher decided that she would LIKE to read the Hunger Games aloud to the class, she sent out a sheet informing the parents, which said, if she had more than 3 students whose parents were uncomfortable with this, she would not read it. Is this not a more democratic way of presenting imagery/material to an audience that engages the parents in the decision, without setting off bombs just so someone can get their way?

    I mean, duh…it seems like a no-brainer and frankly more conciliatory way to work with the parents of the students.

    What qualifies this teacher to work at this school? Does she have training to work w/special needs? I suggest that you write a letter to inform the school that it should print out a list of proposed films/books that they would like to share with the class, and allow the parent some say BEFORE they are viewed/heard by the class.

  5. angelina says:

    Kathy – I’m pretty pissed off myself. I’m not looking forward to engaging with her again over this issue but I know I need to email her to ask her for the next film(s) she’s planning for the class.

    Chelsea – that sounds like a great way to decide on classroom material – Sam’s teacher sounds really smart as well as thoughtful. And way more qualified to work in ANY school. Supposedly all the teachers hired at Max’s school have training working with special needs kids with different issues. But I have my serious doubts about this one. I know I should do as you suggest and write a letter with this good suggestion but I’m reluctant to make a fuss right now (that’s how it would be viewed) since I’m apparently the only one voicing any concern. I’ll give it some thought though.

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