Tag: health insurance sucks

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.