We Go With Him

The 99 or 1 Percent? #autism

A comment from Sarah yesterday has me thinking:

As parents and families of children with disabilities, children on the autism spectrum, are we the 99 percent, or some number/figure/entity else?

Very often I'd say it feels we are the 99 percent, part of a vast hoi polloi of humanity, people, hoard?, all in need of services and placements and therapists and staffing for our children. There is never enough of anything to go around. There are so many needs and there are so many with needs and there are so many more who have so much less than what we have.

Maybe there are some families with autistic members who are of the 1 percent and can always whip out a check book/platinum credit card/trust fund/etc. to pay for tuition + a big donation at X exclusive private Jersey autism school, all the techno-devices imaginable, unlimited therapists and staffing, therapy dogs, you name it: This is not us, not most of us.

But then doesn't it often rather feel and seem that we are a 1 percent of curious situation, experience, circumstances? The prevalence rate for autism is 1 in 110 children now, 1 in 94 in New Jersey: Autism is more common than ever. But still if you're on the spectrum or our child is, you're all too often aware of how alone you are, of how little anyone(s) else in the world around you seems to be like you.

I don't know the answers to all these questions; can only say I suspect Charlie was in some 0.1 or 0.01 or 0.001 percent, or 0.0001 -- some figure of uniqueness -- determined to have an evening bike ride with his dad on a misty warm Monday December night.

Far from me to say Charlie is any sort of 'elite.' He does stand out in a crowd. He's part and parcel of the great messiness of what it means to be human.

 

The Eternal Autismland Conundrum

 

It is the eternal conundrum. The same day your child has a mammoth, sweaty evening behavior storm was the day he biked the most ever in one week (172 miles), said some nice longer phrases in response to his dad's questions about 'where are we going,' pedaled two miles in a downpour while he and Jim were on the bike path, told us in the middle of a car ride that he needed 'bathroom.'

Some separate the 'bad' from the 'good' things their child does, as if to say the former are 'not the child but the autism.' We've become rather inclined to say that what Charlie does, is what Charlie does. The real Charlie is a messy and complex mix, accomplishing lovely feats and then all wound up in storming.

Perhaps the effort to do all those great things -- plus yestrday's anxiety of waiting for dad -- causes Charlie immense stress and it gets bottled up, to emerge in a great whoosh, for all our careful efforts to explain with social stories and calendars and pictures?

It's a conundrum that we'll keep working at, together with our boy.

Bring Ayn Home

The clockwork of Thursday gave way to the reality of Friday morning when the schoolbus came early and Charlie, who was awake but looking very content in bed, not budging. Wheedling, coaxing, insisting and the like are all proven means to get Charlie (understandably) very annoyed, and therefore not in the right mood for a 45-minute-at-least bus ride. So, after 10 minutes, Jim and I told the bus driver, it was all right not to wait (she would have).

The bus turned down the street and Charlie got out of bed, calling for the white car.

We quickly decided to call the bus and the driver was too nice! and came back for Charlie who didn't look too thrilled. But he got on and, after being out of sorts when he first got to school, had a good day. He was smiling on deboarding the bus and we had a full afternoon of togetherness: Bike ride, trip to a little local amusement park where we sighted a short man wearing a fez and probably not (but you never know) from somewhere far from New Jersey.

Then another bike ride, a yelp signaling a stomach ache (good eating + some topsy-turvy ride action), a long session of listening to iPad music of all sorts (jazz and reggae and rock 'n' roll with healthy doses of Beach Boys -- back on the iPad are two songs from Pet Sounds that seem less likely to drive everyone bananas after repeated cycles of listening -- and Charlie's long-time favorite, Sugarcane Harris, an avant-garde jazz violinist Jim introduced him to a few years ago). 

Again, good times together and I'd like to emphasize that word. Life with Charlie is difficult, imposes limitations on what we can do, sometimes makes us wonder if we can carry on through Charlie's next behavior storm. But the main thing is we all together. Though we sometimes feel less than sure if we are up to the task, we do believe and know that we do the best taking care of Charlie.

I've been thinking about all this a lot more than usual after learning about how, on June 16, the province of British Columbia removed a 9-year-old autistic girl, Ayn Van Dyk, from her father; from her home. Ayn has been gone for two weeks as of July 1 and is thought to be at a "specialized hospital." She has not had any contact with her family, or they with her, a situation that I find beyond inconceivable.

Derek Hoare has created a Facebook page, Help Bring little Autistic girl back to her daddy. There is a petition demanding her immediate return and a call for a letter-writing campaign: Here is a letter by elementary school teacher Sherilyn Klassen, and here is a letter by Ayn's father, Derek Hoare. 

Let's get Ayn back home. I certainly don't even want to imagine what ours would be like without Charlie. 

Local Hero

As Jim so finely puts it, Charlie makes the paper.

What Happened to Jonathan Carey Could Happen to My Autistic Son

It's past 11 pm as I'm writing this. Charlie is still awake; he just came down the stairs and asked for a walk and a little grin spread across his face when we told him it was too late and that, if he woke up early tomorrow, we could go. He had a good day at school -- working on saying full sentences -- and a fast-paced 16 mile bike ride with Jim and then, in the white car, he started rocking fiercely and grabbed at both our arms and screamed.

This, or some variation of this, has happened before; not that that makes it any easier. Jim kept driving, I gave Charlie some supplements that seem to be helping his stomach -- we've noticed that he's made the connection between taking medicine and calming down -- and he drank the better part of two bottles of water.

Leading us to think, he was having thymic distress and he was really thirsty -- things that, despite continued efforts, Charlie does not communicate verbally. I also think he could very well have been -- must have been -- thirsty after the bike ride but his eagerness to get in the car shoved aside his knowing he should get something to drink first. Then distress, panic, catastrophic thinking set in and a long-established need for deep pressure.

There was more up-and-down upper body rocking; Charlie must get some 'pull' and pressure from the seat belt. There were more yowls. Then there was a distinct change in Charlie's voice, a lightening and a loosening, and we knew the storm had passed.

We are glad we were with him to see it through.

Especially as Jim and I spent yesterday haunted after reading about the tragic death of Jonathan Carey and the abuses of individuals with disabilities in poorly managed state centers, as reported in the New York Times. Complaints of mistreatment and beatings were too often only handled internally within New York state's agency for individuals with developmental disabilities as a Care2.com post by Amelia Thomson-DeVeaux details. I think it's fair to say, the abuses are continuing right now.

Indeed, the second thought (the first is below) that came into my head on reading the New York Times article was, this happens again and again. In six years of blogging, it's not hard to regularly read about abuse -- physical, sexual, even psychological -- of individuals with disabilities at schools, in centers and institutions, in the US and, let's face it, all over the world. The UK's National Autistic Society has put up a petition to prevent abuse of adults with autism and other disabilities: Sometimes just signing an online petition doesn't feel as if one is doing too much, but enjoining others to sign it or just telling them about it gets the word out about an issue that most people who aren't personally affected by it often don't heed to.

As for the first thought that came to me after reading the article. It was, what happened to Jonathan could have happened to Charlie. 

Charlie has had tremendous behavior issues, difficult moments, SIBs. Now that he's so tall and due to his being so athletic, once he's in behavioral storm mode, things can be extremely difficult. There are ways to address this that Jim and I have become practiced practitioners of such. It takes a lot of self-control, an ability to radiate calm and confidence that we'll all get through it, all while communicating to Charlie that you're going to be ok, it's going to be ok, the storm will pass out of your body and head, it will.

There are ugly, violent ways some deal with such behaviors out of ignorance, lack of training, lack of humanity.

I had written about Jonathan in 2007. Reading about his suffering and his death, and about his parents' experience, made me queasy all over, because the horrors the New York Times article describe happen all over and everywhere, even in what those 'in the know' say are the best places. 

All of which is why, Charlie must live with us. There will be a time when he won't and can't and making sure the right kind of place, with the right staff and supports, exists in the not-too-distant-future: I wake up every day and think about this and how to make it happen.

And I wake up every day grateful and relieved to know Charlie is with us, always.

Yes, he fell asleep, just shy of midnight, before I finished this post.

A Guest at the Center and a Different Walk

Charlie's erratic sleep pattern has its benefits, so to speak.

As on Wednesday, Charlie struggled to wake up and get out of bed on Thursday morning. We were again quite late getting to the Big Autism Center. 

Once there, Charlie took his time getting out of the car. We drop him off on the school's lower level; above is a bridge to an upper level, which houses administrative offices and is the official entrance. I noted that a couple, maybe several people were walking on the walkway and talking. Usually only one or two people walk in and they are usually quiet, especially if they're parents or various consultants.

Then I heard a woman say "Call me Mary Pat." And then, "Is all of this for the Big Autism Center?"

As in, the speaker, noting the size of Charlie's school (it really is housed in a big, quite new and quite nice building), was asking if the whole structure was indeed for autistic children?

(Um, yes, that's why the center's name, prominently displayed on a sign at the entrance, is what it is.) (It's not actually 'Big Autism Center' but something of the sort.) 

I walked backwards (the better to keep an eye on Charlie) into the Center, pressed the intercom button, and told the secretary that Charlie was (at long last) at school. I could just see that several students were sitting in the (usually empty) front reception area, as was (I think) the music teacher with his keyboard. I inferred the students were going to greet the guest and maybe even to perform for her? (Not Charlie, though; he hadn't wanted to sing at the school's spring concert and generally doesn't care to perform on command.)

The aide who came to walk Charlie to his room confirmed my sense of who the guest was. In regard to him sleeping late, she laughed and said, guess now that he's turned 14 he's decided to be a teenager, with teenagerish sleep habits.

(New Jersey residents, and others who follow US politics, may/will identify who was the special guest at Charlie's school.)

After a slow but steady several-mile afternoon bike ride, Charlie was out cold around 8.45pm. He woke around 10pm and tromped downstairs, iPad in hand and on. He stood around holding the iPad close to his ear for several minutes and then asked twice for a bike ride -- the answer did have to be no -- and then for a walk. 

Sometimes he likes to bring the iPad, gripping it surely as he barrels down the street. It was drizzling lightly last night and Charlie, fortunately, left the iPad playing Disney songs on the living room floor.

At a certain juncture he made a right, a move that portends a long (5 mile plus) walk. On we walked in a single file, me behind Charlie and Jim behind me. And then, as we passed a local school where he had some rather tumultuous summer school days, Charlie -- first time ever -- made a right into the school's driveway and cut the walk in half.

He still couldn't sleep till very late (very---he's still up at 'post time') and I'm wagering he'll have another super-slow time getting out of bed on Friday. But after over a year of walking the same walk upteen times, that one Charlie-initiated right turn was in the right direction: Charlie knows the score.

Day of Three Bike Rides

Charlie was glad to go on every one of the three bike rides he did with Jim on Sunday. As I've often noted, he loves to be in motion. He's been riding with more ease, and faster, since Jim changed the gears on his bike.

Sunday morning's ride in New Jersey horse country was preluded by Charlie hurrying out of the car, seemingly eager to choose a breakfast item at a 'general store' in the town near the bike trail. But once in the store, he dashed to the counter and tried to throw a plate.

It all happened in about five seconds and Charlie was quickly directed to the front of the store and out the door without anything else happening. We felt terrible, as Charlie had been doing fine looking around the store and waiting in line on previous occasions, though certain looks suggested that his presence was not the most welcome. We won't be going back.

It's, how to put it?, the really painful side of all of this 'autism awareness' business. Many had been aware of us in the store, and of Charlie's being different, but such awareness does not always translate into acceptance. In times past, I would have felt a need to do a lot of explaining about what had happened and what autism is and much more. Now, I think the best thing to do is to clear out of any trouble spots and move on-- to let it go--and we did.







Charlie and Jim did ten miles on the lovely bike trail and we reflected how it is always better for Charlie to be out under the wide open space of the sky. The narrow aisles and glass cases of the general store must have felt confining to him. He had asked to go in, as if he has some unappeasable urge to go where he has a feeling he should not, and then something happens. It's our job to be on the lookout for when he's sensing such, and avoid places where trouble can (and did) occur.

But things on the bike path were good. Jim related that Charlie cried for the first half of the ride --lagthen cheered up--smiley, Jim quickly texted me--on the way back, which was uphill.





Sunday was so sunny and bright, we thought it well to take advantage of the fine weather. Charlie had only rested at home a short time when he asked to get back in the car. At first he sat and doggedly waited watching the numbers on the Giant Timer iPad app scroll by. Then we gently encouraged another bike ride--and, after several no's, Charlie was ready to ride four more miles.




Charlie asked for ride #3 all on his own, after dinner. The sun was just starting to set and he and Jim really enjoyed one more tour around the neighborhood, to make it a 40+ mile weekend.

To no one's surprise, Charlier was hungry afterwards. He heated up some frozen fries and grinned when I pulled out a watermelon and cut it up. At 9.30, he looked at the front door and said 'yes,' indicating that he wanted to go out again. We told him we would, to go to school Monday morning. Charlie went upstairs and brought down his iPad, and asked me to get his blue blanket. He stretched out on the big black Ikea couch and fell asleep, across the room from where Jim and I were sitting.

I'll hazard to say, I think he likes to be near us.

IEP Signed

Obviously, this photo is from Sunday; I took quite a few. Despite asking for the 'white car' within about five minutes of sitting down, Charlie was very smiley the whole time we were at the basketball game, even without the raucous noise. (The audience was actually rather tame; it was the piped-in music that was deafening.)

Charlie's IEP meeting on Monday morning went so well that I actually signed the document instead of invoking my right to wait 15 days to 'go home and read it over and think about it.' He is transitioning to a secondary school classroom either in the summer or in the fall and will have a different teacher. 

Without intending too, I ended up saying a great deal about why Jim and I feel and know how important education is for Charlie's future and life and happiness in a Care2 post I wrote just before running off to his IEP meeting. And in a throwback to my days posting about vaccines, vaccines, and vaccines at AutismVox, I wrote two posts about that topic at Care2.com. 

I'll write more about Charlie's IEP meeting tomorrow, about what the speech therapist said about yes/now, and what Charlie's teacher and the behaviorist suggested about the green shirt and brown pants. I've made a social story on Charlie's iPad about 'saying good-bye to the green shirt'---we went over the story and he went to bed wearing it tonight and knows 'something is up.' 

Yes, I am already scouring certain websites to get him some of the same clothing items in multiples so we won't have the green shirt issue again.

Though I'm sure they'll be something else. But when I compare this year's problems (insistence on wearing the same green shirt/brown pants ) to last year's (how do we fade off this helmet?)---believe me, I know how well Charlie is doing and how far he's come.

Current Events: How do you talk about them to kids with disabilities?

Charlie woke up just around 7.30am on Thursday and was ready to go by 5 minutes to 8am.  He had a good ride up to the Big Autism Center, a 'wonderful' day at school with lots of walking on the track (though he didn't like his lunch), a big snack, a late afternoon nap, a ride down a very well-lit (nothing like neon lights shining out amid the snow piles) state highway. Hanging (and running) around our house while playing quite a mix of iPad selections. One more venture out into the 19 degree night and then settling at home, again with music and lemonade, and Charlie was asleep sometime after midnight (but before 1am).

Quite enough for a day, in a (not unpleasant) G-rated kind of way.

I'm counting down the days till I start teaching for the spring semester 2011. Classes begin on Wednesday but I don't actually start teaching till Friday. 

Usually I feel a little wistful at the end of break, that it's time to get 'back to it.' I've kept busy blogging at Care2.com the past couple of weeks, even venturing into a topic I'm not the fondest of, politics. My posts for yesterday were about topics very close to me: the question of accommodations for individuals with disabilities (in a post about January being National Braille Literacy Month); the urgent need for a community and a culture of 'equity and inclusion' expressed by UC Berkeley Chancellor Robert J. Birgeneau in the wake of the terrible events in Arizona; the huge ethical questions raised by prenatal genetic testing.

Just a little light reading, right?

Writing about Charlie and his and our days remains my touchstone. I just finished (it's about a quarter to 1am EST as I type) writing a Care2 post about how I've been trying to talk to Charlie about what happened in Arizona. No answers about what might be the best to say, or what to say at all. But I do think it's important not to act as if Charlie has no idea about what is going on: Maybe he cannot grasp every last detail, but he knows when people are troubled, sad, anxious, worried. We believe in presuming competence in Charlie and while he is not your typical teenage boy, he does understand some things (and maybe many more than we suspect) as much as any other individual his age.

And yes, he's been reciting the Pledge of Allegiance since he was four years old. Hand over heart.

 

On Being Active

The afternoon bike ride (the start of which you can see above) that Charlie went on with Jim was good exercise, but clearly not enough. Later in the evening, Charlie requested a walk and not just the quick tour 12-minute tour of the neighborhood we've been doing.

He wanted the 5 1/2 miler we did over, over and over again starting in fall of 2009.

Charlie's need for a more extensive physical workout had been suggested earlier in the day when, during gym at school, he had gone for a sudden very fast run that took him out into a (traffic-less) parking lot. Enough consternation was caused that his teacher called me in the morning.

It was good to be back out for a serious walk later on and despite the cold. Once home, Charlie requested a ride in the white car; when told we would do that tomorrow morning to go to school, he stood quietly then grinned and ran up the stairs.

I don't start teaching till after Martin Luther King Jr. Day and have been blogging a bit more at Care2.com on topics including the Republicans calling for a vote to repeal the health care law, how the budget cuts the Republicans propose will hurt special education, among other areas of education, and the empire of Facebook.  There is much about Charlie on each post.

After all, it's thanks to him that the spirit of advocacy was roused in me.