Not-at-all magnificent obsessions…

Laziness is not part of my operating system, and yet I find myself wanting to succumb to it more and more often these days.  I think it comes with being middle-aged (although I read somewhere that sixty is now the new forty, and this -quite honestly- is disturbing,) and wanting to not be on the go all the time.  Maybe it has to do with the fact that I am fully aware that J has only one more school year until we find ourselves in each other’s company most of the time.

I will have you know that J is now a ‘linger in bed on Saturday and Sunday mornings’ person, and this has allowed us to wake up startled by the amount of sunshine streaming into our room.  This does not extend to those days when everyone else must go to work and J has no school, of course, but we’ll take the weekends and embrace them as “mornings we don’t have to leap out of bed.”

Of course, if you are familiar with The Byrds or Chapter 3 of the Book of Ecclesiastes, you know that everything has its season and its time, and some of J’s obsessions (like being up at 4 on a weekend) have been replaced with other quirks we could live without.  The way we work around this is by weighing which is worse, and then we find a way to compromise.

The snow boots, my friends, have GOT to go.  I say this as our weather has been acting rather treacherous, but I don’t think snow boots are the thing to be wearing these days.  We’ve dispensed with the forty pounds of heavy jackets, and we’ve accepted that we don’t need the four blankets on the bed, but we’re clinging to the snow boots.  This is, of course, a lesser “evil.”  I could think of infinitely worse things that he could be clinging to, and I’m glad it’s the boots.  I don’t want to see them linger well into sandal season, though…my feet would suffer.

We are two months away from J’s next appointment with his psych.  We were supposed to go on Good Friday, but the weather wasn’t cooperating and -thankfully- the doctor called to let us know that we were his only appointment that afternoon and could we come earlier.  Since this would’ve been a problem for us (because J was set on “we’re leaving at 2:30”,) the doctor and I discussed J’s current needs and determined that all is well.  Yes, the obsessions are annoying, but no, they don’t interfere with his day to day living.  We agreed to come back in late June to discuss that last .25 mg of med that J is still taking once a day.  (We are no longer splitting pills, and we are not giving him a placebo in the evenings…he knows that his morning dose of med is IT, and he’s totally fine with the situation.)

We have, however, noticed little obsessions that have cropped up recently.  Nothing like Jack Nicholson’s Melvin Udall in As Good As It Gets, but obsessions nonetheless.  Light switches get pushed down (even when they don’t need it) three times; closet doors get opened and shut repeatedly, and in quick succession.  The Bus Song gets sung (from Sunday to Thursday) no less than twenty times a night.  “Good morning” is said in the afternoon some thirty times before J finally transitions to “good afternoon,” and then “good afternoon” gets repeated some thirty times before he switches to “good evening,” and then -for one last hurrah- he keeps saying “coffee…yellow bus…” through his closed door until he hears each night’s reader reach his/her bedroom.  There are doors that MUST be open.  There are drawers that must be opened and then closed, even if there’s nothing of interest for him in them.  Nothing is overwhelmingly obtrusive, and yet there it is…happening until the need is satisfied.

We are being patient with all this because we know part of the issue is J’s autism, part his OCD, and part the reduced amount of medication coursing through his body.  The one thing that has worried us all along is that the SIB and the aggression will come back and, so far, this has not happened.  We can’t, obviously, assume it never will, but we have to trust that J has learned -over time- to manage the anxiety that used to cripple him to the point of lashing out to let it be known he was upset.  It is easier for him, especially if one is paying attention, to let his feelings (and the source or antecedent) be known.  Which takes me to last week…

I think sometimes I don’t quite get across to the people who work with J.  I try.  I also try not to be Ms. Know-It-All-Pushy-Mom, but I’m pretty sure people get that impression regardless of how hard I try to prevent this.  For example: when I say that “NO” is the best answer when J wants something that he’s not usually allowed, say “NO.”  I will be the first person to tell you that he will get upset, but I also will tell you that he knows when you mean “NO” and when you’re hesitant.  He picks up on that vibe and he runs with it…that is his superpower.

J occasionally goes on outings during the school day as part of his integration into the community. Some of this trips involve going shopping.  I have absolutely no problem with this because it is our policy to encourage independence, and tolerance of the word “NO” when it comes to certain purchases.  I had to reiterate this last week after J was sent home with the dire warning that “he might hurl” because they allowed him to eat anything and everything they had in sight, and they allowed him to buy a 2-liter bottle of soda which they then wondered why he’d be insistent on drinking.

Long story made short: J didn’t throw up, but his entire routine was thrown off by two snacks (one store-bought and another from his snack bag he brings from home,) and two lunches (one of the cafeteria and another from double servings of the teachers’ potluck,) plus 2 liters of soda, and another random snack he demanded and was allowed to have.  I kept him home the next day just to get him back on track.  Why?  Because after a full day of asking all and sundry for a snack and being told YES, J needed a healthy dose of NO.

I explained to J’s teacher that J is hardly deprived in the food department; J gets a healthy, hearty breakfast, two snacks for school, and comes home to a snack, his soda, his cookies at 5 P.M., his dinner at 7:00 and his cereal before bed.  We do put vegetables on his plate, but this kid actually eats chips (not diet…his beloved Pepperoni Pizza Pringles, thank you,) cookies, pizza, cake, cookies, donuts…just not all on the same day, and not in uncontrolled ‘gimme, gimme, gimme’ amounts.  When he’s had his serving of chips and his soda for the day, he is DONE with chips and soda.  He can have a soda with his meal at a sitdown restaurant, but he has to finish it THERE; like I told his teacher: I wouldn’t walk out of a restaurant with whatever’s left of my wine or beer, so J doesn’t get to walk out with his soda either.  And there’s no buying a soda as we wait to pay at the grocery store.  One of the greater achievements of the past year (and I admit that this is probably ludicrous to other people) is that I can now say “no, we have -insert item, food, product here- at home, and you don’t need another” and it’s not the end of the world.

I will accept the small obsessions as long as I can continue to have the balance of NO in our lives, the stay-in-bed-a-little-longer of Saturday and Sunday mornings, the smaller amount of medicine.  I can deal with three pushes of the light switch, drawers opening and closing, closets being inspected and hangers pushed to far corners for no good reason.  And the day that changes, we’ll deal with it, but -for the time being- NO works, and the rest is something we have to ride while it lasts…

This goes totally counter to my plans for Autism Awareness Day…

Yesterday was not a particularly stellar.  While I don’t hold much hope for a magical birthday (opting to generally ignore the day and feel totally awkward about any degree of attention foisted at me on the day,) I was sort of chomping at the bit for April 2nd, and for April in general.  It is, after all, the one day/month of the year when you will see a steady stream of attention for this particular sector of the population.  Blue lightbulbs were found in the place where I’d left myself a reminder they’d be stored.  My Doctor Who t-shirt was clean and ready to be worn (it reads The Impossible Girl, but I think of it as more of as “The Tries to Tackle The Impossible Girl”.)  Dada left for work wearing blue.  J decided to buck a trend and wore his “NeuroDiversity” t-shirt with a brain nicely emblazoned on his chest.  Wrong color, but right message. It’s a small thing (in the great scheme of things,) but it’s something we DO.

And then I went to the mailbox.

I’m pretty sure I’ve mentioned before that out health insurance provider probably has my number flagged.  There’s a reason for this, of course, and the reason is an unwillingness to listen on the part of customer service reps I’ve spoken to in the past.  The reason I know my number is flagged is because I now get to speak to patient, well-informed, helpful employees who sound like they’ve had hostage negotiation training.  Yesterday’s phone call was merely to confirm the suspicion that often strikes me when I open insurance company letters: J has been a victim of incorrect coding.  And, as has often happened in the past, that is what it was.  The hostage negotiator customer service representative explained that the labs J recently had done weren’t being covered (to the tune of 470 dollars and one cent) because the doctor had them coded under J’s primary diagnosis of Autism.

I let out a long, heartfelt sigh.  Then I asked the customer service rep how it made sense that drawing blood for lipid, metabolic and a hemoglobin test made any sense as being related to Autism.  She said “they don’t.  You need to call the doctor and straighten this out.”  I thanked her, wished her a happy Easter, and called Dada with the news.  He reacted with the same level of frustration I was feeling.

The truth is that a lot of doctors (not all of them, but a lot of them) are too focused on getting you in and out of there to see the next person in their seemingly-interminable list of appointments for each day.  I can understand that this is overwhelming, and that the demands put on residents at teaching hospitals are pretty rough.  My cousin is currently finishing her first year and she is pretty much barely functional.  A medical residency is a test of your knowledge and of your mettle; they want to know if you have the right stuff to do the job day in and day out.  You have to update charts, study for tests, go on rounds, absorb information, work long hours…and people sort of blend one into the other until you know the chart but you’re not (necessarily) focusing on the person.

I remember this doctor.  He did the basics and then was done.  I tried to explain that J has lost a significant amount of weight (we’re holding at under 230 now…) and that his diet has changed for the better, that he’s working out regularly, and so on and so forth.  I got a lot of yeah, yeah, yeah, and then we were done with some labs ordered and a “see you in six months.”  The flu vaccine was administered, and we came home.  I didn’t feel like we’d been to the doctor so much as we’d waved at him from the bus as we drove by, but the guy was congenial enough and the nurses made up for the whole yeah, yeah, yeah attitude.  He wasn’t rude.  He was just…pretty sure that this was all cut and dried.

The first letter from the insurance company related to this visit said the appointment wasn’t covered.  I called about it and they said “well, because his diagnosis is Autism.”  I explained he’d been in for his annual physical and, binder in hand, I took them over the history of J going for his physical at the same time of the year since we moved here.  They looked at his file and, yes, I was right.  “Call them.  They coded it wrong.”  Call was made, and issue was resolved.  And then came the labs…

The concept of comorbidity is not lost on me.  I know that Autism has many medical conditions that somehow appear in its wake.  Are they caused by the Autism?  No, not really.  Are they more frequently present (or documented) in people who happen to be autistic?  Yeah, of course.  Of course, all the documentation regarding this is the result of several people in different places noticing that there are certain patterns that are repeated in patients that share signs/symptoms/diagnoses.  Take, for example, J’s possible case of psoriasis.  Go to Google and you will find an abundance of material relating one thing to the other.

I know (seriously KNOW) that my son is firmly planted in the Autism Spectrum.  I have absolutely NO doubt that he is autistic, and that this is an important medical factor for him for the rest of his life.  Ask me, please, when was the last time he saw a medical doctor for his Autism?  Does J’s Autism figure into the way we approach any medical issues?  Of course it does!  Does J’s Autism figure into any conditions he might develop in other areas of his body?  Possibly!  I don’t think J’s possible psoriasis is a result of his Autism because other people in my family have had it, and I’m more inclined to believe that -hey!- the hereditary factor that is often cited in studies conflated with other factors that are triggers for psoriasis.

J’s Primary Care Physician doesn’t treat J’s Autism.  J’s Primary Care Physician has to take J’s Autism into consideration so that he/she can provide the proper level of care based on J’s needs.  When I take J to the doctor to have his physical health checked, the fact that he is autistic is only part of who he is as a patient.  An important part, yes, but not the part that the doctor is palpating, testing, listening to; while J is autistic, his heart, lungs, liver, kidneys, corneas and ears are merely human of the garden variety kind.  His Autism plays a part in how he treats his body, and what medications he’s on, but it’s not what the doctor is looking at/for when we go in for an annual check-up.  We go to his psychiatrist for med management, and the labs reflect how the medication affects J’s organs, and the PCP focuses on that, not on how the meds affect his mind.

It’s a trivial issue.  Someone read J’s file and determined that because he’s autistic that’s all there is to him medically.  The truth of the matter is that medical coding is a complete and utter mess that causes a great deal of problems under the guise of improving efficiency.  I don’t argue the “he’s autistic” label, but there should be a little more care exercised by the doctor when he/she is determining what their job is in relation to that patient sitting across from them.  What is the doctor actually going to focus ON?  What is the doctor actually looking AT?  If you reduce the patient to his/her disability…well, it sucks.  You’re going to end up making a mistake that can be corrected, but that brings yet another hassle to people who have other (bigger, fatter, juicier) fish to fry.  When Dada or I have to take time away from our main jobs (whether at home or at the office) to make a call or write an e-mail asking WHY things have been coded in that way.

Yes, yes…we all want there to be more awareness about what Autism IS, and what it DOES to individuals and their families.  My blue bulb (which, by the way, didn’t shine last night because it was gone by the time I left for the grocery store at 5 P.M….don’t ask) doesn’t mean “look at this home of an autistic individual.”  What we are trying to say with our blue bulbs, blue clothes, blue shoes, blue ribbons, blue nail polish is that there are many of us, and it’s a big deal in our lives that that blue is necessary.  Everyone KNOWS Autism is out there, but not everyone understands how it trickles into everything.  What is even worse is that sometimes the Autism overrides everything else, and we are reduced to extrait d’autisme.  Maybe all parents of special needs individuals feel like they’re eventually reduced into an essence, an extract of their child’s diagnosis?

We all want doctors, teachers, nurses, waitresses, neighbors, strangers, cashiers to look past the Thing that makes our kids “different” and to understand that there’s more to them that they are encountering when we stand/sit across from them.  Getting that one little number on a medical record right is a step in the right direction.