Tag: ADD

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.

Your Light is Equal to Your Dark

This broadcast is brought to you completely by chance and my inability to go to sleep now that Philip is back from New York and I’m perfectly free to go to sleep and not be a sick single parent.   This physique and brain are perverse and as soon as I am off duty I can’t calm down, sleep, relax, or shut the brain faucet off.

Philip has been in New York Since Saturday night and returned in the wee hours last night.  I’ve gotten up for four mornings in a row and navigated the crabby child through his ablutions (rituals) while swallowing knives and gasping for air because I have the delightful seasonal disease whose flavor is:

chest cold with hard acceleration to bronchitis

shortness of breath

tightness of chest

earache

sore throat (the knives!)

Anyway, I say this every single time, I’ll say it again: single parenting SUCKS and I take my hat off to all you amazing people who have done it successfully.

In addition to the usual joys of raising a kid who has a difficult relationship with food and the world, this week has seen Max landed in the principal’s office for singing a verse or two of the Weird Al Yankovic song about being fat to a couple of kids who (apparently) are a little on the largish side.

Plus he had the flat out audacity to deny that I am myself fat and might take offense at having a Weird Al song directed at my corpulence.

This was a hard sell since I could barely keep a straight face in trying to take this whole thing seriously.  I mean, what he did was NOT NICE but hardly constitutes more than an insensitive barb being thrown at a couple of kids.  And it was WEIRD AL YANKOVIC.

I am so fixated on the fact that my kid is into Weird Al that there is no way I could take offense at having his fat song sung right in my face.

And this is why my kid is going to end up in jail and be a very bad person.  Because I fail to take this as seriously as the principal did.

Please believe that I did have a very long and serious talk with Max about how his actions must have made the largish kids feel.

It used to take throwing punches to get sent to the principal’s office when I was a kid.  You know what kids do?  They tease each other and hurt each other’s feelings.  You know who’s kids have never done that?

The number is too small to even record.  EVERY KID DOES THIS AT SOME POINT OR ANOTHER.  EVERY KID.

I have much more serious problems to worry about with my kid than him being insensitive via Weird Al.  So excuse me if I have a hard time feeling as horrified as I should.  It’s kind of like when Max comes home and tells me that a kid called him an idiot.  I say “Well, are you an idiot?” and Max tells me he’s not an idiot, he’s smart.  So I ask him what difference it makes to him if some kid tells him he’s an idiot if Max knows for himself that he’s not?  The point is that the kid has stuck him with a barb meant to hurt him and it worked but it is nothing more and there are two things Max can ask himself in any similar situation:

Is the insult true?  If so, perhaps it indicates something he can work on.  If it isn’t then it’s nothing.  Max must let it go.  Max must know his own worth.

Then I tell him his worth because that’s my job.  And because I love him.

I’m having a little writing crisis.  I just started the third draft and am not sure if my first chapter is even necessary.  Three damnable people have mentioned “taking a break” and I rail and scream and pound the walls because I’m on fire with this goal, with the mountain being half climbed, with being closer to realizing my life’s potential than I have ever been before and I don’t want to take a step back.  I want to work.  I want to blaze through it.

What I want is someone else’s perspective but everyone I know who could give me the kind of perspective I need is too busy to read right now.  So Philip (one of the damnable people) has asked if he can read the second draft.  I have to say I’m a little scared to let him read it.  He’s actually an amazing editor but I don’t need an editor yet.  There’s also this terror that he won’t like it, that he’ll think it’s crap.  After eighteen years of being married to him I still want him to be impressed with what I can do.  Aside from my awesome ability to get fat and alienate people.  Letting someone read your second draft is like-

You know, I can’t finish that sentence because at this hour the only expressions that come to mind are all coarse and inappropriate in one way or another.

Raw.  A second draft is still raw.  Not as much as the first one.  Once you get this far it isn’t daunting to do another draft.  Once you get this far you are so invested in your work it’s a matter of great pride to make the work of so many hours better than you thought you could make it.  I feel the push in myself to make it count because I might die of this pestilent new year.  Pulled muscles, strep throat, bronchitis, fatigue, and more of the same muscle getting pulled again and again- I’m not so robust this year.

It’s okay.  The main thing is to get a better version of this novel written before I kick it.

I haven’t even gotten to mention the scary-strong garlic and greens soup my mother made for us.  A truly healing soup (it tasted like medicine) because she’s had bronchitis for a month.  Plus vertigo.

Plus my dog wants to kill her cats.

Her dog wants to eat our house.

It’s all going to be fine.  I feel almost certain that I won’t die until I’ve taken my novel past the raw stage.

Thank god for child psychologists.

The kid is going to the pediatrician to discuss medications.  Not for the ADD but for the OCD.  Yes, it’s come to this.  I know how a lot of people feel about medicating children for anything mental.  If my kid had diabetes no one would suggest I withhold insulin from him but these brain issues scare the crap out of people.  Lots of people don’t even believe they’re real.

There are a lot of people who still think ADD is a euphemism for a rowdy child who just needs a firm hand and a parent who isn’t too lazy to keep them “under control”.  I am feeling a lot of anger at such people lately.  There is no longer any excuse for people to “not believe” in mental illness and mental disorders.  Pictures of the brain are proving a lot of things psychologists and neurologists and doctors have been theorizing about for years.

Max’s psychologist told us that strep throat makes OCD symptoms much worse and sometimes makes previously undiagnosed OCD present itself.  Why?  How strange!  How improbable!  He says that strep throat affects the part of the brain that controls the same functions that are affected by OCD.  It’s too bad I can’t explain it like he did.  It’s totally fascinating.  He says they’ve got images of brain activity during strep infections that prove this.

I’m going to have to deal with my anger over the rampant ignorance about mental disorders in some way.  I imagine I’ll hash it out here, like I always do.

My heros are all the people who have mental disorders and have no shame, discuss it openly, let it be a part of their everyday story, who share out loud and foster understanding and brave ridicule and censure to bring light into the still medieval views so many people have about brain function.  My heros are all the people who live with mental illness, who get through each day so that they can help others through the turgid waters of mental dysfunction to find their gifts.

There is a median for everything, a spectrum for normalcy that includes a median along which most people lie, but which has infinite variation.  We all fit on there somewhere.  Not normal is on either end of the spectrum with the averages falling closest to the middle.  No matter who wants to believe there is no such thing as “normal” or “abnormal”, there is.  But it doesn’t have to be a negative thing.

Those who daily have to struggle through a quagmire of inefficient brain function, often rendering their experience (and therefore their expression of) the world dark and dangerous, have in them the ability to effervesce with a corresponding light.

However dark your darkness, your light is equal.