Tag: parenting special needs kids

ADHD Test Results – and how it leads us nowhere

Max with onion ring

This week Max finally got tested for ADHD.  We brought with us the teacher evaluation sheets as well as the one I filled out and he took the test which I thought was going to be this big difficult long test – from the way everyone talks about it and the way no one wants to pay for it and the years it’s taken me to get him to this point…it turns out to be a 15 minute test.  I’m choking back my angry feelings that everyone – health insurance, doctors, teachers, etc – making this seem so complicated when it is very very simple.

Max does not have ADHD.  It is conclusive when all the data is compiled.  Just looking at the data from the computer stimulus test it is easy to see why everyone all along the way has thought it likely that he had ADHD.  But he doesn’t.  The test revealed some indication that Max has some auditory processing issues but to explore that further would require an occupational therapist qualified to do sensory processing assessments.  This would either cost us thousands of dollars out of pocket or that the school use their resources to perform such tests.

I almost started crying in the office.  I think the doctor thought I was disappointed that Max didn’t test positive for ADHD.  That’s not it at all – given my choice I would choose that Max not have any brain or neurological disorders.  I almost started crying because I have been pushing and pushing for this testing for years so I could rule it out and move on.  I was crying because other than the awful homework nights and PE failing – Max has been doing very well this year.  So well that all of his teachers and the school counselor can’t see what the problem is that I keep talking about.  I feel fraudulent.  I feel like the hypochondriac who feels cancer spreading in her body but no one else sees it until it’s suddenly an urgent problem requiring surgeries and treatments I can’t afford.  I feel like the mentally ill person no one believes because I’m, you know, mentally ill and us people have a tendency to see things distorted and enlarged.

Except that I know I’m not imagining the problems Max has had since he was a kid.  I know I didn’t imagine the self harm.  I know I didn’t imagine him talking about stabbing himself to death when he was two because he got in trouble for something and felt really bad.  I know I’m not imagining the difficulty he’s had fitting in socially.  I know I’m not imagining the teachers and principal at Ballston Community school calling me three times a week to tell me about Max’s disruption of their classrooms, his disrespect of this teacher or that, his refusal to cooperate, his altercations with the older kids, and them all looking to me for a solution.  Them looking to me to get him tested, or medicated, or give him consequences that would make his behaviors STOP.

Everyone looking at me to DO SOMETHING ABOUT MY KID.

I know I didn’t imagine how his fifth grade teacher gave up on him and had to send him to the principal’s office several times a week just to get him out of her classroom where he was making it impossible for her to teach the other kids.  I did not imagine that awful meeting I had with his teacher, the principal, and another teacher who wanted to be in on the meeting to tell me how disruptive and obnoxious my kid is in assemblies – the only time she had to deal with him.  I did not fucking imagine all these people telling me the school couldn’t do anything else for my kid.  They were done.

They looked at me and asked me WHAT ARE YOU GOING TO DO ABOUT YOUR CHILD?

So I almost started crying because everyone keeps telling me I need to do something about my child and now everyone’s looking at me and asking why I’m making such a big fuss because my kid is obviously JUST FINE.  It makes me want to tear my hair out.

The tests have conclusively ruled out ADHD and the current psychologist and the previous one that I didn’t like both think he doesn’t have OCD either.  What looks like OCD is apparently sensory processing issues.  But right now there is no official explanation for his intense need for rituals.  The bed-time ritual whose order is very important and without which he will not sleep – there’s no official explanation for it.  But other people’s kids don’t stay up until 3am waiting for their bedtime routine to begin because their parents accidentally fell asleep before getting him into bed.  yeah, that happened.  Max stayed up waiting and waiting for me to tuck him in and put the fan on and give him his melatonin and his book and put the frogs on – he got so tired trying to stay awake and finally came down to wake me up and angrily ask me why I never came up to tuck him in.

I asked him why he didn’t come to get me earlier.  He didn’t know.  It didn’t occur to him.  He was waiting for things to happen the way they’re supposed to happen.

What now?  Nothing.  I worked hard all this year to avoid suddenly finding ourselves back in that bad place with no support in place to deal with it.  I wanted to set things up for Max to avoid having to wait until things get BAD to get him help.  I worked and stressed tirelessly for nothing.

Philip reminds me that it wasn’t for nothing.  After four years of not  being able to get him tested to find out if he does, in fact, have ADHD – we finally know for sure.  I wish it didn’t leave more questions and uncertainty, but it’s true that having at least this one thing crossed off the list of possibilities is important.  It’s off the table.  My kid isn’t “normal” or “typical” but we know at least one thing he’s not.  That’s something even if it doesn’t help me prepare for the bad times I know will come.

The psychologist thinks Max most likely has NVLD and describes it as a personality disorder rather than a brain disorder.  He thinks the reason Max is doing so well this year is because he’s in an environment that’s working for him and has teachers that he likes and respects – except for the PE teacher – and that as long as he has an environment that works for him and as long as he likes his teachers then he’s going to seem pretty normal and the school isn’t going to see his behavioral problems.  He says that when that changes, and he predicts that if it doesn’t in 8th grade then it likely will in High School, Max will likely act-out and become problematic as he was before.  So if it gets bad – and the behavioral issues return – then I push the school to test him for learning disorders.

In the meantime I can’t ask for any accommodations from the school.  Teachers can make them as they individually see fit and most of them already are to some degree.  The biggest issue this year has been the homework and his PE teacher.  He is trying harder with his new PE teacher and isn’t flunking his class now (the better shoes that correct his pronation are helping too).  As for the homework – it hasn’t been an issue during testing because he’s had light to no homework and it’s been AWESOME.  As the teachers return to the normal level of homework I will instigate my plan to help Max with or without their cooperation.

It is ridiculous for my kid to do more than one and a half hours of homework a night.  He often takes two to two and a half hours to do a full night of homework.  Sometimes it  becomes three hours.  This is unacceptable to me.  I have told the counselor and I will be telling the teachers that I will time his homework on any night that he has a full load so that he doesn’t do more than 1/2 hour of homework per class.  It’s what I have to do for my kid and it may affect his grades.  That’s possible.  My kid is smart enough to get straight A’s but if achieving that means going through the stressful struggle to get his assignments done and me having to spend my entire evening trying to change his dark mood and his frustration and tears back to a good mental place – it’s not worth it.  I care more about Max’s emotional state than I do about him getting top grades.

I’m his parent.  I know my kid.  I know his strengths (he has a lot of them) and I know his struggles.  My relationship with my son is important and finding the delicate balance between preparing him for reality and protecting him from it isn’t easy but it’s something I take seriously.  I’m trying to make him take responsibility for his experiences outside our home but I also know he’s generally behind his peers in practical ways and pushing him when he’s not ready is both ineffective and destructive.

When Philip came home after the testing and commented to Max about his test results Max said “Yeah, I guess I’m just your problem child.”

And that about sums it up. There’s no diagnosis to explain his otherly-ness.  I know he has anxiety and that his anxiety medication has helped him quite a bit.  But he doesn’t even have an official diagnosis of anxiety.  There’s no official explanation for why Max is so different.  Why he poses such parenting challenges.  It’s fucking hard just feeding the kid.  It’s practically a full time job trying to get him to try new foods and find ones that are healthy or healthy-ish that he’ll eat.   Being able to explain to people that his food issues are related to his OCD was the closest we ever came to shutting people up – shutting down their criticisms and interference and rudeness and unwanted advice.  Now we don’t have anything.  We have no official defense against everyone’s criticism.  And yes – I get criticism all the time – both outright and implied.

So I’m IT.  I’m our only defense.  I’m wearing mental boxing gloves and I will fight anyone who tries to put my kid in their own boxes and then find him (or me) wanting.  We have our own yardsticks for success and normalcy.  I will do battle with anyone who suggests or implies that my kid is the way he is because he’s just a bad seed, a willful shit, or that he’s “normal” and that it’s just my parenting that’s made him into a spoiled kid who won’t eat vegetables.

Max is my problem child.  Parenting him is like parenting three kids at once.  I wanted protection for us.  I wanted help.  I wanted support.  I didn’t just want those things – I’ve been desperately in need of them.  But what I keep coming back to is that it’s just us.  We are on our own as usual.  Doctors can’t help.  Teachers can’t help.  There are no resources for us.  There is no help.  We’re on our own.

But you know what?  The fact that Max is as confident and well adjusted as he is today is because of mine and Philip’s determination to parent the child we actually have and to adjust our parenting to meet our child’s needs and challenges.  We aren’t following anyone’s parenting rules and we keep making it up as we go along.  We change as our child changes and the most important thing we’ve ever done is to choose our battles carefully.  Max trusts us.  He talks to us.  He turns to us and he knows he is loved no matter how weird he is and that, in fact, we love his weirdness and he loves that his parents are really weird too.  He takes pride in it.  So I think the three of us, with my mom in a supporting role (and who’s also wonderfully weird), will protect each other and support each other even when no one else does.

Max is an amazing kid.  Parenting him is going to be the death of me but it is also an incredible privilege.  This kid of mine has a whole lot of shining to do and it’s my job to make sure he has the opportunity to do so.

Before you try to fit any of us into your preconceived notions of how parents and kids should be or act – I suggest you look up!

Before you judge any of us against your own yardsticks – I suggest you LOOK UP!

My boxing gloves are on and my fists are ready.

You should know that I have a wicked right hook.

All the Disorders and the Moon Too

ghost of a boy

This was the week of doctor visits for Max.  On Tuesday night we took him to his physician.  The same one that did my horrible exam this past fall.  We went to discuss his stomach aches, his leg pains, and his occasional dizziness.  Here is what the doctor thinks:

1) He has some kind of stomach problem and she thinks it’s H. Pylori.  His blood is being tested for it.

2) Leg pains are being caused by the early development of plantar fasciitis due to the wearing of CRAPPY-ASS SHOES.

3.) He has the “angriest” interior nose landscape she’s seen in a long time and a cobbled throat due to severe allergies which she says would account for occasional dizziness and sore throats and headaches.  Also: nosebleeds.

All of his complaints, you see, seem to have physiological explanations and are NOT psychosomatic.  We knew he had seasonal allergies but didn’t realize they were so bad.  He’s taken allergy pills before and it didn’t seem to help him much.  I need to find out if he needs to get tested for specific allergies in order to address this.  But if his allergies are so severe – how the hell did he manage to be examined by an ear-nose-throat specialist for nose cauterization and not have this problem brought up?

I suspected bad shoes might be the issue behind his leg pains because he used to complain a lot more about foot pains when exercising (also considered by most and sometimes even me to be due to his dislike of certain activities) until I could no longer find the Vans-style slip on shoes in his size which were the ONLY shoes he’d wear.  When he was forced to wear tie-up shoes that had more cushioning he complained a lot less of foot pain.  These tie up shoes are crap, of course, but you can’t just force a kid like Max to switch what he wears – it takes care and prepping.  I was working on finding support inserts for his shoes but he just rejected the first pair last week.  Doc says he has to wear better shoes.  So we will buy him better shoes with our next paycheck.

To the P.E. teacher who accused him of lying about his pain: FUCK YOU.  Sometimes kids can both hate you and your class but not be lying about the pain they feel when you make them walk fast or run.

The stomach pains do so often show up at times when he’s stressed out so that I’m only hating myself a little bit (a lot) for not looking deeper into them a long long time ago.  He may not have the H. Pylori bug but the doctor is certain that his complaint is not psychosomatic due to the tenderness he feels in his upper abdomen.  So yeah, I am actually kicking the shit out of myself for not making a doctor look into this 3 years ago.  All this suffering?  Jesus!

The only thing that pissed me off about this new physician that we all share now is that she did give the obligatory shaming speech about Max’s diet.  “If you only have good food in the house he will eat good food.” I started to explain that, actually, my kid will starve himself to death – but Max piped up and did it for me.  I gave up.  Why the fuck bother to explain that his food issues aren’t because of an indulgent parent but a product of his body and mind being very different?  Everyone thinks what they think and I’m always going to be the bad junk food eating parent (though I hardly eat any junk food) cramming her kid ignorantly with fried and packaged crap and Max is always going to be the spoiled power-hungry kid determined to die of diabetes.  Luckily she didn’t go on and on about it like the pediatrician did.

But it still hurts and makes me want to pry my  kid’s mouth open and shove every fruit and vegetable down his throat in desperation because I fucking know how bad his diet is and it has been the source of incredible stress and worry since he was two and began the great food rejection.  The real kicker is that he’s actually eating some produce almost every day again and trying new things – he’s making a fucking effort.  But we are always going to be the willfully unhealthy people to all doctors and all people who don’t have extreme picky eaters of their own – the only people in the world who understand the truth of the situation.*

Yesterday morning we had an appointment with Max’s new psychologist.  It was a fantastic change from the previous psychologist.  He’s willing to give Max the ADD testing now – he says that Kaiser prefers to rule out all other possible issues before giving the testing but that Max definitely shows enough indication that he may have ADD to warrant the testing.  The other doctor made the decision to insist on making the school do testing that the school was not going to do – putting me in a bad place.  But this guy is willing to go to bat for Max which earned my trust immediately.  The last doctor decided (without bothering to discuss it with me) that Max does not have anxiety or OCD but that he has Sensory Processing Disorder.  Since Max’s original psychologist ruled that out early on I have not been willing to consider that as a possibility.  Dr. Carey’s explanation for why he didn’t believe Max had SPD was really clear and I agreed.  Dr. Disney** thinks Max may have Non-Verbal Processing Disorder which is related to SPD and is a learning disability.  So he doesn’t completely disagree with the previous psychologist but I’m willing to listen to him because, like Dr. Carey, he made a very good case for this and it doesn’t really negate Dr. Carey’s assessment but I can see how some behaviors can become more clear when kids are older.  Dr. Carey saw Max between the ages of 7 and 11 and in a totally different environment.  Dr. Disney is seeing Max at 12 years old and there’s no question that differences in the natural development at different ages can show you different aspects of a person’s whole psychological makeup.

I have never heard of NVLD.  After talking to us and Max for an hour and going over Max’s self-assessment paperwork (first time he’s been old enough to fill that out and it may make a significant difference in the diagnostic process) he showed us a checklist with 3 columns, one for ADHD, one for something else I didn’t catch, and one for NVLD and showed us that there were more behaviors related to NVLD checkmarked than for ADHD though both show strong enough indication that he may have both (they can be co-morbid).  He definitely thinks Max has anxiety but isn’t convinced he has OCD.  In digesting all these different disorders it’s important t to note that they all share some clusters of behaviors in common and most of them can present like OCD and complicating matters more is that they can ALL exist co-morbidly.  It is most likely that Max doesn’t have one thing or another but a mish-mash of different issues to varying degrees.

The trick is to sort out the groupings of behaviors and issues and figure out which are brain based and which are personality based because this is the most important thing to know when it comes to treatment.  ADHD is brain based and can usually be treated very effectively with medication.  NVLD is personality based and is not treatable at all with medication but with behavioral and occupational therapies.  Very very different treatments.  OCD is anxiety based and can be treated with medications but the medications that are effective for it are completely different than the meds that treat ADHD.  We know Max has anxiety – that is the only thing we know for sure.  The anxiety medication (and he’s on a very low dose and is probably in need of increasing it soon) has worked well for him and proved therapeutic.  He has not self harmed since starting on it and he has been less high strung about most of the things that stop him in his tracks and his sleep has been better as well.

You will observe that until yesterday my one goal was to get Max tested for ADD so we can get a 504 plan in place.  That has been a huge goal of mine.  And this new psychologist is willing to start that process right now.  But we’ve decided to wait a little longer.  No doctor or psychologist that Max has seen has doubted he has ADD, every last one of them has concurred that it’s a likely diagnosis.  But now that we finally find ourselves in what seem like careful and capable hands – we feel like we should wait to do the testing and give the new psychologist a chance to get to know Max and work with him and sort through all these issues of his and see if patterns emerge that will help clarify what we are dealing with before we launch into official testing.  It might seem a little surprising that given the green light for the testing AT-FUCKING-LAST I would suddenly back off of it – but my only real concern is to figure out how I can help my son navigate successfully in a world that is acutely uncomfortable to him.  The only reason why I’ve been fighting so hard for a diagnosis and the testing that determines it is because at least in the school environment I can’t make many demands without that stupid 504 and I need all the available tools at Max’s disposal to help him succeed – that’s my job as his parent.

But at the moment he’s doing very well in school (except for flunking P.E. but I hardly count that) and now we finally have a psychologist who I feel we can trust – and he has given us new food for thought and homework to do and so I feel we can afford to slow down now and let a professional guide us.  I had no one to repose confidence in since we left Max’s last psychologist in Oregon.  I feel some profoundly deep relief right now.  I spent yesterday reading about NVLD and it was a bit of a revelation.  I got to talk to a friend whose son was diagnosed with this and it’s remarkable how much this processing disorder can look like OCD but with some significant differences.  I am too new to reading about it to explain what it’s all about.  If you happen to be curious I read two articles yesterday that seemed pretty good:

Non-Verbal Learning Disabilites: A Primer

What are Non-Verbal Learning Disabilites?

So we have the next appointment in two weeks and I am feeling hopeful and so relieved that I was a basketcase all of yesterday and got nothing at all done and couldn’t think of anything else.  I have been carrying so much stress over the health and well-being of my kid (I always do – but it’s been exponentially worse in the last few months) and the stress of no one listening to me or helping me – that now it’s leaving my body I feel like I’m in shock.  A good kind of shock, but shock none-the-less.

Meanwhile I have been saying “FUCK YOU!” and “FUCK OFF!” to a whole lot of people in my head like I’ve got a Greek chorus in there.  It hasn’t stopped since yesterday.  It’s directed at people who think all you have to do is force kids to your agenda and they will bend, to people who think my kid is just fine as he is and doesn’t need any help (get your damn self in my shoes and you will see why he seems okay to you and you will die of exhaustion), to everyone who doesn’t believe in ADD or OCD or other mental disorders, to every fucking fucker out there who believes that all you have to do if you have depression is “change your attitude” and “snap out of it” and that all you have to do if you have anxiety is “stop worrying so much”, and to all those smug parents with kids who eat massaged kale salads who think the reason my kid doesn’t eat good food is because I don’t make him, and to all those people who think that my kid is a lying lazy-ass.

Fuck you all.

As for the rest of you – all I can say is thank you for constantly holding me up when I get frustrated and for understanding what it’s like to raise a kid who is really different – awesome and cool but really different – whether it’s because you’re raising one of your own or because you have that amazing thing called empathy and imagination.  You guys are the ones who get me through all the rough days.

Thank you.

*Not totally true.  There have been a few pediatricians and a few fellow parents with kids who eat normally who DO understand that this eating issue of Max’s isn’t something he’s just doing so he can eat crap food.  And I’m deeply thankful for each and every one of the exceptions to the rule of assumptions surrounding extreme picky eaters.

**Don’t even say it.  Shhhh!  Yes, that’s his real last name.

Here’s Hoping 12 Isn’t Like 9

Max is 12 years old today.  The thought that keeps going through my head (because it amuses me) is that: I’ve kept a kid alive for 12 whole years!  I have loved my kid at every stage.  Except for when he was 9.  And 3.  Oh, and 5 was a pretty rough stage.  The best times with him when he was a tiny baby was when he slept on my chest and I slept too.  The best times with him when he was a bigger baby was bicycling all over town with him in a seat in front of me.  Plus his laughter.  The best times with him when he was a toddler was playing chase until we fell over laughing.  The best times with him when he was a little kid was having philosophical discussions about the ethics of war.  The best times with him when he was a bigger kid was going to Powell’s and see him find stacks of new books to read.  The best times with him when he was a big kid is family movie night which 45% of the time involves watching Zombieland.

And here we are.  I don’t know how 12 is going to be.  I’m hoping 12 isn’t like 9.  But right now I absolutely love the stage he’s in.  He’s just discovered drama.  He actually cares about his grades and is super proud of the 3 A’s he has right now.  Except for PE.  He couldn’t care less if he flunks PE.  He is mature enough that he had a debate about homosexuality with his semi-homophobic friend in which they agreed to each come up with valid and reasonable points and they would listen to each other.  Max reports that they both came up with good points and acknowledged them.  Do you know what kind of maturity it takes to listen to someone – to really listen – to someone whose viewpoints you are absolutely opposed to?  How many adults do you know that can do that?  He’s anti-war but loves weapons.  (He will always be a warrior in nature)  He loves fancy glassware and dishes.  He loves movies.  He still loves video games.  He’s funny and articulate and his empathy for people has slowly been  catching up to his great empathy for animals, though I suspect he’ll always love animals more than people.

I will admit that I fear the onset of hormones that shapes so much of everyone’s teen years.  I’m hoping that the dramatics of his early life were enough and that we’ll be spared a terrible teen, but I’m no fool.  I know not to have any specific expectations.  Right now – Max is awesome all the way through.

The other day we were at Target to find a jacket for Max.  We passed by some shoes and I spied a pair of the most hideous hiking boot/stiletto/platform combination ever and I declared that I had found my fall look.  Max says “You mean you want to wear hooker hiker boots?” really loudly.  I burst out laughing but quickly realized that I shouldn’t take my son out in public.  Next we passed by a pair of nasty looking sweater “boots” like a flat sole with a big knitted sock sewn to it.  They were white and dotted with silver sequins.  I suggested that these were going to be his next pair of shoes, to which he replied “I’m not going to wear tranny shoes!”* even more loudly than before.

Which is when I realized you can’t take any of us out in public.

Our tough times are tough but we have a lot of fun together and at the end of the day – it’s a good sign when your kid still likes hanging out with you when he’s 12 years old.

Happy Birthday Max!

*He has no negative feelings about transexual people other than that he’s seen some examples of transexuals dressed in questionable manner.

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.

5 Tips for Yelling at Your Child Effectively

When my kid was a toddler I discovered the surprising fact that I am not the calm patient person I’d been thinking I was my whole life.  I based this self image on the fact that I never got in yelling matches with people (excluding all the times I suddenly freaked out and started yelling at friends because they touched my stuff because repressed memories don’t count).  I yelled at my kid.  A lot.  I found myself losing my temper constantly.  It’s not a pretty thing, yelling at kids.  It’s demoralizing for you and frightening to them.

Unless you know how to do it the right way.  I have been mastering my yelling skills for many years now and have become so good at it that if you were to ask him if his mom yells at him he would tell you “No”.  I know this because I mentioned how I don’t like it when I have to yell at him and he looked mystified and said I don’t ever yell at him.  How can my child not remember that I just yelled at him three days ago?  How is it that he doesn’t remember that I pretty much yelled at him non-stop through years 3 through 5?*

Because I did it THE RIGHT WAY.  And now, because I want you all to have the same parenting success that I’ve had, I am going to share with you the simple rules for yelling at your kid the right way too.

1.  Never make value judgements about your child when you’re losing your shit.

When I as an inexperienced yeller I would say things like “You’re being so bad!” and “Why the hell won’t you nap you little hellion!!”.  This implies that your child is misbehaving on purpose and is a bad child.  I realized that every time I yelled at my child I was accusing him of being a bad kid or of purposely sabotaging my life by dumping the entire bookshelf onto the floor instead of addressing the actual thing I was mad about.  So I changed my language accordingly “What you’re doing is not okay!” and “It makes me angry when you won’t nap!”  This expresses how I’m feeling about his behavior rather than suggesting that his behavior means he’s a bad person: instead of yelling about who my child is by suggesting he’s an evil little cur, I’m expressing that his actions are making me angry.

2.  Don’t be mean.

Some people might suggest that yelling in itself is being mean.  I disagree.  Yelling serves a distinct function in your child’s growing up experience.  For one thing it helps teach them that people have limits to their patience.  Can you imagine what would happen if a kid grew up never reaching the limit of their parents’ patience and then discovered out in the world that people have serious limits and are much more likely to punch you for pushing too hard when you’re not a sweet little cherub?!  Kids have to learn this and it is best for them to learn this with the people who love them best in the world. Yelling is also sometimes necessary to keep kids out of danger (like when they hurl themselves out into traffic without looking, this is a great moment to yell your guts out to get their attention while you grab them back to safety).  It may scare them but sometimes this is useful for their own safety.  Yelling also helps them understand that everyone has to express their anger sometimes, that it’s normal to lose control of your emotions sometimes.

When you yell at your kid you should never be mean.  This is an extension of the first tip.  It’s not just about how you phrase your anger – it’s about not saying petty mean shit to your kid that they’ll remember long after you’ve made up.  Things like “You’re so stupid!  How many times do I have to tell you not to pee on the seat?!” or “What kind of loser kid are you to not understand what I told you?!”  The kid will NOT remember that the reason for the anger was an action that is remediable but will remember only that they are inherently stupid, which you only said out of anger, not because you really think they’re stupid.

3.  Remove the swear words from your yelling.

I heartily approve of swearing to relieve tension and to attach emphasis in language where it is needed.  However, peppering your shouting with swear words makes it much scarier and though you may achieve something like making yourself feel better, you will not have a positive affect on your kid.  Swearing at your kid is a lot like saying mean petty shit when what you really need is for them to acknowledge that they’ve done something you want them to stop doing.  I speak from personal experience.  Once you let the damns and the fucks rampant in your yelling, you’re just losing ground.

4.  When you have become calm again, talk with your kid about what happened.

Apologize for losing your cool but be clear that an apology for yelling is not giving them a pass for what actions of theirs made you angry in the first place.  In the adult world it is not okay to yell at someone and if you do yell at someone an apology is always necessary.  By apologizing to your kid for yelling sends a couple of important messages: that everyone loses their cool sometimes and this is a forgivable action but also that the proper thing to do is apologize for having done so.

Then discuss calmly the thing that made you angry.  Explain why their actions are not okay with you and if you feel consequences are required, mete them out.  If I lose my cool and yell then I usually give my kid one more chance to change his behavior before giving consequences.  But I let him know exactly what the consequence will be during this discussion, while I’m calm.  Often times these sit down talks become meaningful discussions about appropriate behaviors and sometimes they extend into great learning moments.  Take your time.  Give your kid the chance to respond with questions or opinions.

5.  End discussion with a hug

Then give them a giant hug and tell them that they are your most favorite person in the entire world and that no matter what they do, you’ll always love them.

This is the moment I usually inform my son that I’ll love him even if he commits crimes but I won’t lie for him or hide him from the police.

To be honest, I rarely yell at my child anymore.  I snap at him impatiently sometimes but the days when I frequently hauled off in a yelling fit are far behind me.  By writing this post I’m not saying that parents SHOULD yell at their kids, only that it’s natural, it’s definitely going to happen, and it matters how you do it.

*To be fair to me, raising a special needs toddler takes even more patience and energy than raising your usual hellion tiny person.  I was just discovering at that time how different my kid was from other kids.  The things that worked for other parents didn’t work for me.  Their patience was tried, mine was fried.