Why Paul Lee matters…

By now you may have heard about the death of Paul Lee, a 19 year-old autistic student forgotten in a school bus for several hours in California.

If you haven’t heard about him, please read this: http://abc7.com/news/parents-of-student-with-autism-found-dead-on-bus-speak-out/984535/

That this is heartbreaking is an understatement.  This is not  as far-out-of-left-field as we’d like to believe it is.  The services to which our children are entitled are often overwhelmed by the demand of an increasing population.  Paul Lee was too noticeable to miss, it is argued, but how much do people REALLY notice?

As I read the description of Paul Lee, I thought of J.  Big guy.  Tall guy.  Silent guy.  I remembered the time that the bus went round and round for over an hour and a half, and J got home feverish, dehydrated, desperate to go to the bathroom.  I went ballistic.  I called the bus depot.  I called the school.  I wrote letters.  I was outraged that J’s group had been driven around in that way without a single consideration to their inability to communicate their needs with the same ease as neuro-typical students.

On that particular occasion, it is rumored, I made some people cry.  There have been times when I’ve wondered if I overreacted.  I always come back with the same answer: no, I didn’t.

A great push has been made towards not leaving kids in cars.  “Put your shoe in the backseat!”  “Set a reminder on your cell phone!”  Personally, and this might be high and mighty of me, I don’t see how one can forget a child in a car.  I know people lead very busy lives, and their schedules are manic, and it’s here there and everywhere.  Isn’t THAT what we need to fix?  Don’t we need to slow down and try to not be that thinly spread?

In Paul’s case, his mother put him on the bus in the morning.  When she called in the afternoon to ask when he’d be dropped off, they told her he hadn’t been to school.  Only then did they realize something was amiss.

Why wasn’t the mother called when the student was marked absent?  I often get calls telling me J is absent if he is “late” to class…that is, if he walks more slowly due to the sea of people in the hallways and arrives after roll has been called.  I always call the school back, or text his teacher.  This mother wasn’t given this chance; the school didn’t contact her, and she spent the whole day probably doing what we all do: getting ready for her son to get home so she could get on with the business of attending to his needs.

I’ve read some of the comments online, and people have gone to the extent of saying “if he was too stupid to honk the horn, why should he even be in school?”  The dehumanization of the disabled individual is alive, well and kicking.  I would say that, to a degree, it is blossoming and burgeoning.

In the middle of Autism Awareness, in the middle of people saying “it’s all about Autism these days!,” this sort of thing still happens…

Look, I know I’m preaching to the choir here, but this is something I need to say: we, the families, children, adults on the Spectrum are real.  What we do every day is not the informational brochure.  What we live for is not the IEP.  What we aspire to is not the fundraising.

Paul Lee was a human being made of the same stuff we all are made of, and his mother, father, sister are all made of the same stuff we are all made of.  Paul Lee suffered.  Paul Lee, a big, noticeable guy who was simply wired in a different way and couldn’t process what to do to help himself, died because no one thought to do one little extra thing on that hot, hot day in California.  No one walked to the back of the bus.  No one called his mom to ask why he wasn’t at school.

You can argue that his mom should’ve called the school to make sure he got there, but the thing is that we put our kids on the bus and WHERE ELSE COULD THEY POSSIBLY GO?  We are surrendering custody, for several hours a day, of a child, an adult who cannot do for his/herself, and who we trust the school will look after.  We know that our child/adult is just another kid in the system, but we have been asked to trust the expertise of the system, the processes put in place for the benefit of our child, and we DO!

Autism is a very complex thing.  Outwardly, our kids might seem as regular as the next guy.  J, with his shorts, his Doctor Who t-shirts, his headphones, his backpack, will look as if he’s just another big dude ambling through life without a care in the world.  Girls flirt with him until they realize there’s something “off” about him; people get offended when he doesn’t say “hi” if they don’t know him.  J will sit there and not say a word for hours on end, and I am constantly checking on him to make sure that he’s fine.  That doesn’t make me paranoid…that just means I KNOW that he is capable of long silences during which something can happen.

People are saying “well, his family’s getting a boatload of money out of a lawsuit.”  Yeah, I’m sure that’s their main focus right now.  Their kid is dead; their kid SUFFERED for HOURS, and he’s never coming home, and he’s never going to need another bath, and he’s never going to have another milestone and MONEY will make up for it…  Yes, yes…that’s the upside of all this, some people will tell you.  Can you imagine what comes next?  If they file a lawsuit, how they will be scrutinized and criticized and lambasted?  On top of grief, they will have a public flogging because that’s the way civil lawsuits play out…

But Paul Lee matters more than that.  Paul Lee is the embodiment of a system that doesn’t quite work, and he is proof that people just don’t understand.  Awareness is a pretty word, and puzzle logos are awesome…but we’re still missing the mark.

The Lees will tell you that, and they will never forget how wide off the mark the system was for their son.

A little bout of the common cold, and some progress on the band-aid front…

Welcome to Sumtumn…that time of year when it’s not longer feeling like Summer, and it’s not quite Autumn thus making our lives (and wardrobe choices) miserable.  It’s cold in the morning so we shield ourselves with sweaters only to sweat like my dad on Tax Day by the afternoon.  It may be an old wive’s tale, but we all get sick and we all spread it around.  Sure, germs and bacteria flourish and kids touch things and don’t wash their hands…I know the science of it all, but I still think Sumtumn is partly to blame.  The limited social contact we enjoyed during the summer months becomes the forced socialization of the start of school and…voila!!!!…there comes the cold we’ve all been dreading, and we’ll be passing around until Spring rolls in with her green robes and flowers in her hair.

Two days, I tell you, J spent at home blowing his nose (as good a job of it as he can do,) sneezing, taking medicine and wanting to be spoiled.  He recovered-ish…and back to square one yesterday.  Misery.  Agony.  Medicine.  Whining.  Insistence on still (altruistically, of course) going to school to share it all with his classmates and teachers and aides.  I am predicting an epidemic by the beginning of October.

On the plus side of this (yes, there IS a plus side,) J is now happily relinquishing all bandages and braces for hours on end.  He sometimes even forgets that the timer that goes off is for him to get more band-aids, and he doesn’t really ask for them until it’s time to shower before bed.  His skin is looking much better, and his nails don’t stick to everything he brushes against.  There was one time when, without anyone’s help, he re-bandaged his hand to perfection…sort of like Rambo…or The Terminator in the first movie when he fixes himself…

On Sunday morning I had to repair the thumb immobilizer.  My argument about “when it rips apart it has to go” didn’t really work.  J, who is a lot more observant and clever than many people would think, found needle, black thread and mother to put together for repairs.  I found arthritis, poor vision and “I haven’t finished my coffee yet!” as valid reasons to put forward in my defense, and J wouldn’t have any of them.  He found me a comfy spot on the couch, a lamp to shine on my workspace, and he left me to get things done while he changed sheets and gathered laundry.

While I don’t agree with the constant presence of the thumb immobilizer, I had to give kudos to my son for being so proactive.  I fixed the thing, and I reminded J that it won’t last forever and, at one point or another, an asteroid might hit it and boom it’ll be gone.  He smiled at me with that knowing look of his, and said BYE.  I don’t think I was convincing enough.  As I said, I’d not had enough coffee.

The fact that J is letting us remove the bandages and occasionally forgetting about them is a good sign.  He feels safe without them, and when he doesn’t (or he feels that he needs them,) he gets them and applies them himself.  That has to be good, right?  This is the way all decisions that hinge entirely on him begin…

I try to give J some leeway to decide things, but sometimes -obviously- it is necessary for me to step in and participate in the process.  There’s been a small uptick in J’s weight because of the sudden change in his gym schedule; TGG is in class during the hours they used to go exercising, and I cannot sustain the same pace of activity as a person 26 or 30 years younger than myself.  We’ve made adjustments, but we have to work a little harder at improving the efficiency of J’s new exercise schedule.  The “anxiety” this causes J (notice the quotation marks, please) has made him want a snack after dinner…and this is something his parents have had to interfere with…firmly.

We had slipped a little, I confess, in the veggie consumption, and I had started cutting corners because I had so many things to do.  The other day I recommitted to our nutritional plan (sounds so much better than “diet”) and we’re back on track.  When I say “we” I don’t mean that I’m losing any weight.  Middle-age has parked itself around my waist and, flexible though I still am, I won’t be winning any Olympic events any time soon.  As long as J is healthy and happy (which he is, thank goodness) and he is committed to eating right and exercising (which he will be once he gets past the eye-rolling stage of the recommitment to health,) we are happy.

So that’s where we are as we skid into the middle of September.  The leaves are turning very slowly; the air is starting to crisp just enough to remind us that our garden is almost done for the season; the jackets have come out of storage, and the blankets are being washed and made accessible to all…

Another year is rolling by faster than we’d like it to, but that’s the way it works…

I have a lo-vely bunch of band-aids

For the past two months we have been contributing amply to Johnson & Johnson’s bottom line.  J will buy bandages from generic brands, but his first choice will always be Johnson & Johnson.  I’m telling you this because it is a far better indicator of Johnson & Johnson’s steady performance than any broker could give you.

You’re welcome.

If I told you that J wears a total of 12 unnecessary bandages, you’d think it’s excessive.  It is.  Trust me: one bandage is one too many.  They are covering nothing but totally healthy flesh.  Well…no.  Right now they are actually covering flesh that is traumatized by the light of the sun.  Nicole Kidman and her on-screen kids in The Others had a better relationship with sunlight than J’s hand does.

The timers have been trotted out to make sure that he takes the bandages and thumb immobilizer off for increasingly longer periods of time.  Insistence on his part only makes me more determined to make him wait.  We have had a couple of face-offs about this, but I have managed to prevail.  At school he doesn’t bother with bandages at all…he gets there and is so busy that he doesn’t give it a second thought.  I have seriously considered some sort of Sisyphus-like tasks to keep him from pointing at his hand and repeating “band aid” until my head starts spinning and I give in to his demand.

Yes, yes, I know.  I should be able to easily resist, but…autism…repetition…obsessive-compulsiveness?????  There are days when it’s easier than others.

A few nights ago we had a small disagreement regarding the band-aids, and by the time someone told me “well, I just put them on him after his bath, but I didn’t put them the way he wanted them” things had become testy.  On top of having had to stay home with a cold, J was seeking comfort from this part of his routine.  Someone (not naming any names…cough…Dada…cough) had gone off-book, and that had caused a problem.

The problem wasn’t so much that the band-aids were in the “wrong” placement.  The problem was that no explanation was offered for the change.

This is what I have learned about J over years of parenting him: if you talk to him, even if it doesn’t seem like he’s listening, he will take into account that you’re putting an effort.  You might not convince him that what you’re doing is a good thing.  You might not persuade him to do things your way, but he will factor in that you’re trying to tell him something.  Furthermore, he understands a heck of a lot more than we sometimes give him credit for, and he likes it when we explain things to him.

Dada’s reasoning had been that J’s skin was dry, and he wanted it to heal a little by letting it breathe and putting lotion on, but he didn’t explain this to J.  He unilaterally made the decision and expected J to instantly accept it.  J, who can be tremendously polite when he’s so inclined, accepted his dictum until it was bedtime, and then he tried to negotiate fresh band-aids with me.  There is absolutely nothing worse in the field of parenting than a lack of communication compounded with insufficient information.  Dada told me “no, I just put those on an hour ago,” but he didn’t tell me he hadn’t told J WHY.

J got scolded.  J got upset.  J asked again.  J was informed that there were no more bandages to be had that night.  J threw a tantrum.  Mother (not proud of this) was intransigent and said an unequivocal NO that made matters worse.  J pounded the bed with his fist.  Mother (not proud of this either) told him to stop being such an asshole, pulled of the “stocking” that keeps the bandages in place to show him how he had NOTHING to complain about…

And then Mother turned around to face Dada and asked (as calmly as was possible at nearly midnight after a miniature version of an autistic meltdown) “what did you do????”

“Me?????????  He’s the one having a meltdown!!!!”  Oh, that’s mature.  “Well, his hand has a dry spot there and I was going to let it breathe!!!!!!”  Did you tell him that?  “WHAT????”  Ahem.  Did you explain to J why you were doing what you were doing?

….

….

….

I apologized to J for having overreacted without knowing why he was asking for more bandages.  I applied lotion to the offending spot, reapplied his bandages, put his “sock” back on, and gave him his thumb immobilizer (which, by the way, has about a week of life left in it…it’s falling apart.)  I then kissed him goodnight, left TGG to read Mouse Soup (a story that we all groan when it’s our turn to read and it gets picked,) and pointed Dada in the general direction of our bedroom.

I confess we were both pretty agitated by then, and the conversation about why J needs to know what we’re doing and why was a lot more animated than we would have liked. It’s not unusual (or, at least, I don’t think so) for couples raising an autistic individual to sometimes take stock of the percentage of responsibility they each shoulder at one point or another.  Dada immediately jumped to the conclusion that I was telling him HE doesn’t do enough simply because I told him “you don’t COMMUNICATE enough with J.”

Dada will tell you that 95% of our arguments as a couple are based on semantics.  Like I explained to him about J: listening is necessary.  J responds to what we say, and to how we say it, and we need to make sure that we take that into consideration.  What I mean by communication, I told Dada, is to not take for granted that he doesn’t understand us.  Dada admitted that this is sometimes hard to achieve, and I told him “why do you think I always look like I’m talking to myself???”

So we have a huge inventory of bandages, and J navigates the supply closet quite well.  Dada is now more adept at remembering to say what he’s going to do, even if J seems to be looking off in the distance at some very entertaining thought he’s turning over in his mind.

Next month we’ll go back to the psych, discuss the med, talk about the many “crutches” J is carrying around, and we’ll refocus our perspective.  If I can’t get rid of the abundance of bandages, I guess I’ll have to crochet an extra large mitten for his right hand…

C’est la vie!