Tag: kids with anxiety

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.

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.