Tag: raising a kid with ADD

Our Progress is in Inches, Not Yards

Max and Zeke Christmas

(Max and Uncle Zeke in the back seat on the way to Grandpa Michael’s Christmas party)

This post is unedited and so may have many typos.  I’m not fixing them.  There may also be incomplete thoughts and poorly constructed sentences.  I’m not editing for those either.  I just needed to write and now I must get back to my paid work.

I am experiencing rising levels of frustration with the school system and with the healthcare system – two systems that are clogged with bureaucratic turds.  Public school is wildly underfunded making it ever-more difficult to get a good education and for kids who are different to find a comfortable place to learn or get special help.  The healthcare system is wildly over-funded which makes it maddening that the level of care most of us are getting is so below par and barely cutting it.  I’m so tired of all this.

Max is struggling in school.  It was only a matter of time.  I tried getting him a 504 and this should not have been difficult since most of his teachers for the last 3 years and his main doctor and his psychologists (both old and new) have no doubt that he has ADD.  Yet I can’t fucking get him tested and without the official diagnosis I can’t get him the 504.  I’ve been trying to get him official help for 5 fucking years.  FIVE.  For the first several we had no health insurance and we visited the psychologist out of our own meager pockets but we could never afford the very expensive testing.  We’ve had two different health insurance coverages for Max in the past 12 months and still can’t seem to get him tested.

So I’m tired.  I’m tired of reporting to his teachers all his challenges and tough nights when he takes twice as long as he should on homework and not hearing back from them or hearing that he’s doing just fine even though I know what a toll it’s taking on him and also his grades have fallen.  Does he have to be getting all D’s before he isn’t doing “just fine”?  Are grades the only way they know how to judge how a child is doing anymore?  What about all the class time he misses by going to the office with aches and pains?  I’m tired of having to hear about how Max’s PE teacher is obnoxious and pushy and it doesn’t matter if he has anxiety and gets frequent stomach aches and his ankles hurt or he gets headaches – she only cares about him passing his PE tests.

He’s also complaining about a kid in his science class.  He hasn’t complained about other students for a few months.  This is usually a sign that things are going down hill.  He’s complaining about being overwhelmed with homework and I want to complain about that too.

When I hear about all this it makes me angry.  Angry because whether or not Max is “making up” all these aches and pains – he’s clearly not doing well.  Either he really is having physical problems that need addressing or his aches and pains are anxiety-induced which means his anxiety is strong enough that it’s manifesting physically OR he is imagining the aches and pains which indicates that there is possibly some serious hypochondria going on.

I’ll tell you what he’s not doing: making shit up just to get out of unpleasant shit.  He definitely lies about things sometimes (ALL KIDS DO) and I catch him in them.  But when he lies he has much less conviction than when he’s doubled over with a stomach ache.  If all his aches and pains are fiction then it’s an elaborate one that he’s been working on for many many years.  If he’s making it up then why do the tums sometimes settle his stomach?  Why do the headache medicines often work?  Why does he keep doing it when it does not get him out of his responsibilities?

I know what it’s like to be Max.  To be otherly and misunderstood.  To find the world we live in to be a terribly uncomfortable place.

Max is a different kind of kid than I was in one big way – he has total confidence in who he is and he thinks other people should let him be who he is and is really vocal about it, unlike me who held so much inside.  He doesn’t bow down or shrink into corners as I did.  He doesn’t hide or try to do what is acutely comfortable for him for fear of consequences as I did.  He believes that others should respect him and his differences whereas I didn’t even respect myself.

I respect him.  But that isn’t helping him in school.  I think he’d have a much graver level of anxiety if he was scared to be himself, as I was, if he was easily intimidated as I was, if he believed that what makes him different makes him inferior, as I did.

Where we’re at:

  • I’ve chosen a new psychologist for him at Kaiser since the last one was failing us and also thought he had Sensory Processing Disorder instead of OCD/Anxiety.  This was intelligently ruled out for good reason years ago by Max’s first psychologist.  We have an appointment with the new Kaiser doctor in three weeks and I will hound Kaiser until they give him the ADD testing he needs.
  • I’ve written to his old psychologist in McMinnville requesting a note be written to the school saying that it’s his opinion that Max has OCD so the school can explore making him a 504 based on anxiety (a much less common medical reason for a 504 than ADD because anxiety doesn’t often get in the way of a child’s learning – but in Max’s case there is indication that it is getting in the way of his learning).
  • I’ve made an appointment with his physician to talk about the stomach aches, headaches, dizziness, and ankle pain that frequently plagues him to rule out any physical non-anxiety-related causes.
  • I’ve made another appointment with the school counselor and Max’s teachers called a Student Study Meeting to discuss ways to deal with his issues.

Max is 12 years old, 5’1″ (and 1/8!), and overweight.  This was not a concern of ours previously since his weight gain was not originally due to any change in habits but we have been working towards addressing this in our own way and time.  He’s been going on walks with Philip and Chick in the evenings about 3 days a week now for 1/2 hour.  So that’s some added exercise and fresh air for him.  I’ve got him eating produce once a day most days again.  He’s eating protein bars again which is good because he needs more protein.  He’s been eating less potato chips (an indulgence that became daily for a while and is now relegated to weekends).  Less soda.  (Again, a weekend treat that through our own stress and tiredness started becoming much more regular).  And he’s trying more foods again.

I’m so tired of worrying.  One acquaintance of mine not long ago suggested that maybe Max is just a well adjusted regular kid who’s going to be just fine.  I can’t tell you how much that made me want to scream – how very unhelpful that is and how if I could believe that I would.  Kids who have started to self-harm at any point ARE NOT FINE.  That is an extreme reaction to stress and any parent who would look away and not address such dangerous behavior would be guilty of negligence.  So I worry because I have reason to worry.

One of the most annoying things about being a person with clinical levels of anxiety is that people are always suggesting that we are worrying about things that don’t need worrying about.  There is always a level of doubt people feel about your concerns.  Like every time I mention I think I’m dying of cancer.  But people really do die of cancer.  I think the main difference between me and them is that it occurs to me that I might have cancer when I notice weird physical issues whereas people without anxiety are much more likely to convince themselves they don’t have cancer.  Both camps of people get cancer.  Those who never believe it until a doctor tells them are shocked when things go wrong because they really believed they were too young or too healthy or that kind of thing never happens to people like them.  When people like me get a diagnosis we usually already know or at least suspected what was going on.   We might be wrong a lot too – but we’re never surprised by bad shit because we already anticipated it.

I think it’s just a different way of being.  My way shouldn’t cause people to doubt me more than others.

But back to Max – I am working hard to advocate for him and I can see that it’s not ever going to be an easy road.  The one thing  that keeps me going is that I know that Max appreciates that I go to all this trouble on his behalf.  My efforts calm him and validate him and ease his anxiety.  The other day he called home (for the millionth time this year) to say he had a really bad stomach ache.  He’s already missed too much school so I said he couldn’t come home.  I told him to lie in the office a little longer and take really deep slow breaths and to remind himself that nothing he’s stressing about in school is dire – that we’re working to make things more comfortable – and to just know that the stomach ache is most likely a result of stress and if he relaxes and breathes deeply it should ease up.  He did as I suggested and said later that it helped.  He stayed in school.  He needed me to hear him, to believe him, and to help him deal with the problem.  I’m here and I help him.

I am not dismissive of my kid.  I don’t talk to him in a  patronizing manner.  I listen.  I address his worries.  I push him to get through challenges.  And sometimes I just tell the world to fuck off and let us be – as imperfect as we are.  I get so tired.  But all this effort that wears me out is worth it because I’m raising an amazing person.  He’s weird, he’s blunt, he has inappropriate humor, he’s a warrior, and he has the sweetest side that he shows to those who stick by him and love him and are named Pippa and Penny and Chick.  He’s totally worth the effort.  That’s my message to myself today.

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.