We Go With Him

Top 16 Tips For a Charlie Friendly Party

 

(1) Don't tell him that you're having a party to celebrate him turning 16 on the Ides of May. In full awareness of birthday party anticipation anxiety, just say something like "we're going to Bayonne on Sunday to ride bikes with friends." 

(2) Buy mini cupcakes, half with chocolate cake (which Charlie does not eat) and half with yellow ('white') cake (which Charlie does eat) so, should he discover what you've stowed away at the bottom of the bag with all the food before you get in the cars, the amount of sugar + rainbow dye #π in the sky he consumes has been minimized. (Sort of.)

(3) Take two cars so you can bring extra bikes and bike helmets for said friends and put the food in the (black) car that you are driving, behind Jim and Chariie in the (white) car.

(4) Remember to get driving directions before you leave so you can find the place where you've put in an order for trays of falafel etc. because some friends could show up early and Mr. New Jersey will need to decamp to the park/party site while you pick up the food. 

(5) Don't worry about not having gotten the driving directions because Mr. I Love Driving in New Jersey gives great directions via bad cell phone connection, misspelled text and arm pointing out the window. Plus, you obviously have your cell phone which (as everyone who've been to Greece with you knows) is surgically attached to your right hand.

(6) Don't try too hard to be organized because then you'll set up an OCD mindset that will countervail and ultimately clash with your child's mindset. 

(7) Wear something with dark colors just in case you spill coffee, grape juice, baba ghanoush, 'brown drink' or suntan lotion on yourself. (You end up not doing so, but harsh experience has taught you.)

(8) Have the party (that you're not calling a party) in a place that Charlie is familiar with, preferably outside, without fluorescent lights (though don't be surprised if a motorcycle-riding group would choose the same day to assemble in the park parking lot).

(9) Delegate. People do like to help and if someone else can pick up Charlie's habitual post-Jersey City-bike-ride Vietnamese food, ask them. (After making sure you order and pay in advance.)

10) Consult your cousin who has two little kids because, now that you are a seasoned/weary teenager parent (not that you were ever Ye Typical Moms to being with, circumstances being what they are), you have no idea what younger kids (the age of the kids of the friends you have invited) like such as juice. Juice, and more juice. 

(11) Keep Charlie's emergency medication on hand because you never know.

(12) Read a Julian Assange op-ed about Google, etc.'s continued evolution into Big Brotherness that Jim suggested you take a look at an hour before leaving for the party. Nothing like total distraction from putting together a social activity for a teenager on the severer end of the autism spectrum in a busy public park near a national landmark (hint: a large statue of a woman with a torch) with bikes, 13 riders, food, drinks and the whole shebang (though you did skip balloons).

(13) Invite lots of people. Friends, former students, colleagues and their kids, Charlie's former and more than beloved and forever remembered teachers who now have their own kids some of whom are the age Charlie was when they taught him at the blue plastic Little Tykes table in St. Paul and St. Louis and he had those big cheeks and wasn't getting shaves from Vince the barber.

(14) Don't worry about anything, whether 90 degree heat, not having enough drinks, the drinks not being cool, not taking more photos, etc.. So long as you have a mostly peaceful easy-seeming boy, it's good.

(15) Enjoy! Revel in the fact that you're all together and that you and your boy have gotten this far on the long road. (And, it's not like you're going to do this too often.)

(16) Order way too much food (inevitably; you're Chinese and your family always has too much food around for any gathering because you are supposed to have leftovers) so you can gladly spend the rest of the week with plenty of hummus.

 

In the Guardian: On abortion and disability

It's practically a cliché for me to assert that life with Charlie is quite unlike anything I ever could have imagined before he was born almost 16 years ago and that life without Charlie is unimaginable. There's been quite a bit to do these past weeks with teaching my way through the end of the Roman Republic and Charlie's med change which has been (we think we see now) wound up with a spate of panic/anxiety attacks -- things got a bit extreme but there is our boy on Saturday with a freshly done haircut and shave -- so, almost a week after it was published, here is s a piece I wrote on abortion and disability in the Guardian.

A woman must have the right to have control over her body. Easily said by a college junior; believed with equal fervency by a woman whose diurnal rounds are very much directed by others (Charlie, obviously) and who's learned that, sometimes when your circumstances are not all free-and-easy-do-as-I-will-whenever--all-the-time, very good things can sprout.

 

On Being Accommodating

 

Accommodations. A very important word in regard to Charlie's education. A term that tends to be a harbinger of legalese as in 'time to invoke the spirit and the letter of the IDEA and the ADA.'

Such is all-important and necessary in molding a way through the world in which Charlie can not merely function, but thrive.

But accommodating takes far humbler forms: My deciding this semester to work at home an extra weekday. The day is Monday and the decision came in most handy as Charlie went to sleep at 9pm on Sunday, woke at half-past midnight and stayed up for the next 22 hours. Inbetween, we did a couple of walks (one at 6am), made coffee (well, I did), visited the doctor after school for the recurring rash on Charlie's face, rode bikes (Jim and Charlie, that is).

Two nights of deep sleeping followed, necessary from a sleep perspective but portending unsettlement in Charlie. Indeed Tuesday and Wednesday were not as peaceful days at school as the sleepy Monday had been.

There have been barometric circumstances that have brought warmer temperatures and, Wednesday morning, an onslaught of rain that meant, after a 6.30am walk, Charlie needed a complete change of clothes and dry socks (he accommodated; in the past, once he had put on the day's clothes, they could not be removed from his body till the evening).

There has also been a pearly full moon.

There has been the now-inevitable build-up to the long Wednesday afternoon and evening when Jim teaches late.

But as of this week, Jim decided to teach his class straight through without a break in the middle. It meant he could take a train from NYC an hour earlier and so, bingo, he appeared on the train platform at 9.25pm to a smiling Charlie.

Last week, when Jim was not due to appear on the platform till 10.25pm, Charlie was fine till 9.30pm and then at 9.50 his agitation broke loose. One hour less of waiting made all the difference.

It is my thought that Charlie knew this throughout the whole day. As he went out the door to the white car so we could meet Jim, Charlie gave me a little glance and said 'good boy.'

 

In the Guardian

My piece, 'Do we really need a cure for autism?, was published last Friday, 22 February 2013, in the Guardian. It was a very huge honor to say the least. I've had the issues of 'cure' and 'recovery' on my mind since Charlie was diagnosed in July of 1997 or rather before, from the time (around the time he was 18 months old or maybe even 10 months old) that we knew something was not right.

I have to say, I'm thrice and four times grateful for all the dialogue with all of you (here when this blog was called 'My Son Has Autism' and then 'Autismland,' on dear old Autism Vox, Change.org, Care2.com); these exchanges informed my Guardian piece. I've tons more to say on the 'cure' issue -- on the 'mystique of cure' -- in regard not only to autism (which is not a mental health issue) but other things (including mental health issues).

Thank you and thanks to, of course, Charlie for everything and Jim for everything plus plus, plus.

 

(How to spend a Saturday of straight rain.)

The Last 2 Lines of 'Easter 1916' By Yeats

We drove down to the beach where we used to stay at the beach house on Saturday morning and drove on sandy streets and sand hills (they really gave the right name to that hurricane) and Charlie said 'no bike.'

You cannot stop an object already flung in mid-trajectile and we drove back home and Charlie called for a local bike ride, which he and Jim are on now.

Last night, Charlie said 'no yellow jacket' and 'blue coat' and wore that blue vest on a cold ride, with lights.

About midway through some car rides (the longer ones especially), Charlie has been debuckling himself from the center seat he has occupied since he was 2 days old and we brought him home from Missouri Baptist Medical Center and sat behind me, saying 'push' so I pulled up the seat and he had the legroom he needs. (I have been the same height since I was about 13 and prefer having my seat pulled up.)

'Taco' he said last night in the midst of not a litany but more like a suite of verbalizations of the things he likes to eat and the places they are and various grandparent references (both sides of the family, with Jim's parents recalled mostly through their now-changed-ownership house). 'Cindy' he bellowed in the car this morning on the Parkway, the name of a verbal behavior therapist at a center I used to take him to when he about 8. It was Disney on the way down the Parkway with a dash of Wiggles 'at Wiggle Bay' as we approached the ocean and then Abbey Road, touched off with Sugarcane Harris, on the way home.

These new spins on routines so rigorously followed by us all were not surprising given that the week was spattered with change and my return to teaching the smallest part of it.

'Hi 'has often been a word Charlie wields when he is agitated (it is no 'polite meaningless' word); this week, his repeated utterances of it, along with vividness of face, were him in the full-pitched ardor of his age. I kept doing the laundry and Jim and I have both been doing a lot of reading.

Nonconformity

Good lord and thank god our boy doesn't do Disney -- Walt, or Mickey, or the Blue Fairy Is Watching You.

'Protest against the rising tide of conformity': It just happens around here.

(Just to note, courtesy of one-half of my extended family, I know or can suspicion the plot, characters, themes of any Disney movie based on one still or song. The rest of this household is non-Disney-literate. Compilations of randomly ordered songs from movies are what Charlie refers to as 'Disney' -- he's not been able, or wanted, to watch more than a fleeting moment of any of the cartoons -- and Jim grew up with other orthodoxies.)

We are burning the midnight oil, listening to 'This Monkey's Gone To Heaven,' and 'Here Comes Your Man' (Pixies, just as I remember them from the Eighties) and ads for Barney videos (that date to the decade after).

 

Why I Prefer to Say 'Challenging Behaviors'

In the context of having dealt quite often with a teenage boy in crisis and liable to self-harm and to other difficult things stemming from what appears to be a combination of extreme anxiety, very little verbal language and what is shaping up to be a chronic gastroinestinal issue, I am thinking of why I prefer, have preferred, shall use, the term 'challenging behavior.'

The terrible events in Connecticut have brought the words 'autism' and 'violent' together very often. The premeditated, social violence under discussion has nothing to do with autism.

Many others have already said what needs to be said; here's my take.

The challenging behaviors' that Charlie has had, can have -- head-banging, biting, grabbing, pounding heavy objects into the wall, smashing glass -- are of the sort that are called 'violent.' Another word professionals, experts, etc., often use is 'aggressive.'

Last week makes it clear to me, I'm sticking with 'challenging.' Charlie's difficult, difficultest times are a maelstrom of distress and physicality. Much of his challenging behavior is directed on himself, resulting in the carbunclish excrescence in the middle of his forehead.

It is the case, after a period a few years ago in which he routinely swiped dishes from cabinets and the dishrack from the kitchen counter, I got rid of the big Chinese cleaver and the chef's knife and stowed away the paring knives. Plastic remains.

It's not that anything with a sharp edge was ever thrown but it's just better to exercise 'safety first.' Truly, Charlie does not know that a knife can be used for anything but cutting gluten-free waffles (because he was eating a lot of those at the time we tried to show him how to use a knife; it was too much of a fine motor challenge) and vegetables and fruit. 

Charlie is not able to read any of the 20 'sight' words and the 100 'snap' words on this list of what first graders know.

Charlie does not know how to get onto the internet and if he did, he'd want me to tell him what to look at (I'd choose photos of a place we've been, like Liberty State Park in Jersey City; he might request the usual Teletubbies, Wiggles, Barney).

Charlie does not know what a gun is or what it is used for.

Flannery O'Connor, You Made the Best Titles

So I prefer not to get too political on this blog but I just want to say (for it must be acknoledged, while Charlie alternated between extremes of nerves and grins on Wednesday while Jim taught late and at last decided the best thing to do was to sit on his bed with a blanket and stare at the timer rolling the seconds by on his iPad, and for I am writing elsewise about, Good Gawd, this) that a good boy is hard to find.  

Charlie, as Jim has been known to put it, has got the good goods.

I Am Not a Pundit But

I got a good taste of stomach-in-your-mouth anxiety such as Charlie must experience all day and into the late hours of Tuesday, checking the US presidential election results. Charlie himself had had more trouble going to sleep with things again shaken up by his return to school but with no bus (because our school district which provides transportation is closed -- they have yet to reopen the schools as some still do not have power and the school district is looking to procure some mega kilowatt generators). Jim and I will be driving Charlie for the nonce.

Charlie got up early, Charlie was puzzled at the lack of school bus, Charlie got right in the white car, Charlie wanted to skedaddle away as we waited for the aides to come meet him. He had a good first day back, with some 20 minutes of asking for the school bus after lunch. He and Jim had a cold yellow jacket bike ride and he and I had a cold, lots-of-sprinting walk.

Jim checked election results, I started talking about putting things in a historical perspective and mentioned the Sicilian expedition in the fifth century BCE and the trial of Socrates, Charlie kept his cheer up.

Jim, facing more fun on too few NJ Transit trains packed to the gills, went to sleep and I checked election results and suddenly on another check on Politico.com, Obama had won some 220 votes in the electoral college and Romney's numbers were stuck at 190 and advanced little. Charlie went to sleep listening to the sound of the ocean and I read too many articles about the campaigns and what happens next.

Four more years and then who knows what?

 

Not that you need to hear this but, head-banging is about as funny as 'retard' to us

We just got through one of those begins-with-whacking-the-corner-of-the-iPad on the bedroom wall storms, though several degrees less bad than the one Charlie had the night before he went back to school, almost exactly a month ago. He called and called for his iPad after things were over but (powdery with plaster dust from the wall), the iPad remains on the brown chair: As we told Charlie, he needs to sleep first then he can have it.

It is past 2am and I want to take one fast glance at some things pertaining to Herodotus but I just wanted to say something I've had on my mind for years.

I really get all-out annoyed when people make references to head-banging and head-bangers and head-smack-on-desk and that sort of thing, in a heavy metal sort of way, in a haha funny black humor! aren't I being so risqué way.

Charlie started banging his head / hitting it with his hand when he was a toddler for reasons that, with this late hour and Herodotus in mind, I will not delve further into at the moment. We've been through helmets, as well as helmet-caused impetigo on the head. I keep forehead-sized bandaids and neosporin in the car because you never know.

Charlie doesn't need those tonight, fortunately.

 

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