We Go With Him

My thrilling summer plans

This Care2 post about findings about the economic realities of raising a child on the autism is all about why:

• It is ok with me that spring semester classes are over; just exams to grade, some reports to write, and graduation.
• It is a huge relief to me that I am not teaching summer school this year: No frantic dashes to get home in time for the yellow school bus, or papers to grade, or classes to prepare.

This summer's plans are, barring any 'interesting' surprises: beach-going, walking and running with/after Charlie, hieing myself into the large city over there to get some Greek food with my best pal/date/guy Jim.

Inbetween which I'll be sitting at this very desk, drinking coffee in non-excessive amounts, grocery shopping in the morning instead of in a mad rush in the few minutes in the afternoon before Charlie gets home, and writing, writing, writing.  Writing.

Charlie Rides the Bus Home

 A little yellow schoolbus of a familiar sort pulled up in front of our house around 3.18pm yesterday. The door opened and I went and said hello to the driver and the bus aide and saw Charlie taking off his seatbelt. 

It was his first day taking the bus home and it went well, aside from a little initial confusion when Charlie found himself being directed to get on the bus, and no sign of the white car. His teachers have been reading a social story about 'taking the bus home' to him for the past week, and we have been reading a copy that was sent home, too. I sent in some special worry beads (from our friends Emma and Dimitri in Athens) for Charlie to hang onto only when he rides the bus. The bus driver and aide (who'd been expecting to drive Charlie home since ESY started in early July) had been instructed about how best to communicate with Charlie. (Not over-doing the language, using straight-to-the point sort of sentences.)

He had a very serious look on his face when he came inside. Jim gave him a high-5 and asked if he'd like a bike ride; Charlie said an automatic 'yes' and they were soon off. Charlie was, Jim noted, very 'reflective' on the ride.

Truly, I think it's how all three of us felt. 

Charlie has certainly taken the bus home from school in the past, even when he was much younger. I still remember the first time we put him on a school bus back in June of 2001, when we were living in a sprawling central Jersey town. We had only just left St. Louis a few weeks before; we had moved back to New Jersey hoping that here might be be a school for Charlie to attend. The bus was the same sort of little yellow one that pulled up in front of our house Tuesday afternoon; while Charlie was the only child on the bus yesterday, the one he'd first ridden was packed with children (almost all on the autism spectrum) and did not have an aide. The bus driver, Mr. Richard, was a very good guy. Charlie had gotten into a seat by the window and  Jim had buckled him in and then, as we both stood below the window looking up at Charlie while he looked down with an expression of (not unsurprisingly) incredulousness, Jim said words to the effect of

And so begins his school career

and many more bus rides to follow.

At the moment, we had no idea of the twists and turns and bumps that have characterized Charlie's path through school these past 9 years; that it would get to the point when we hesitated to have him ride the bus. The ride from the Big Autism Center to our house calls for driving on the interstate and takes at least (without traffic and stopping to drop off other kids) 35 minutes (when traveling at a fairly fast speed). Charlie was having so many behavior issues when he started at the BAC that the bus simply was not an option. But since an at times shaky start in November, things have been good and it seemed right to let go, a little. 

I would think that Charlie missed the coziness of the car and the stops here and there for snacks and sodas. The schedule his teacher showed him indicated that snacks, and bike rides and/or walks, were to be had once home, a little delayed gratification. Jim and I are going to miss the full-hearted feeling of driving up to the BAC in the afternoon and seeing all the kids and teachers and, too, that coziness.

But as oft stated, we're not going to be around forever and Charlie needs to learn to have others do things for him. He may have a more 'eventful' ride in days to come on the bus (yes, the drive has both of our cell numbers and we have that of the bus driver), but over time I think he can manage the ride; can manage a little more independence, within carefully drawn lines. So is Charlie taking the bus home one small step into his future.

Jim and I took some other steps ourselves with a view to this yesterday. While Charlie was at school, we had an appointment with our lawyer (he's part of a well-known New Jersey practice that handles many cases for families with children with disabilities), to talk about a Special Needs Trust, our will---to start making provisions of a legal and financial sort for Charlie as an adult (it will happen soon; it was only yesterday I was waving good-bye to that chubby-cheeked preschooler on the first yellow school bus); for when Jim and I are not here.

Stomach thud at the thought. 

Reading this sad story about a mother in the UK and her disabled daughter---it seems the mother died of natural causes and then, without anyone to feed her, so did her daughter, who had multiple disabilities since birth and was in a wheelchair----and thinking about Bryan Nevins whose careworker has been charged with a felony after leaving him in a locked, parked minivan two Saturdays ago---there is a lot to do; that goes without saying. Jim and I have started to make plans and preparations. Getting the Special Needs Trust together was at the top of the list.

In talking to the lawyer, we learned that Charlie can have no more than $2000 in assets in his own name in order to qualify for federal programs such as Social Security and Medicaid. We asked about guardianship and learned that, 3 to 6 months prior to Charlie turning 18, we should consult with the lawyer to get that process going. We talked about who's going to be the executor of our will, who has power of attorney, who might receive any funds left in a trust for Charlie should he himself pass on.

I know, just a little 'light stuff' for your summer reading.

I'm glad to go out of way and even over the top to get things set up for Charlie. We did for him to ride the bus home. Jim and I always feel our share of self-doubt about what we're doing, though I actually think this is healthy. Figuring things out for Charlie has always been a journey with an almost-blank map. It does make a huge difference to make such over-careful preparations. I'm going to wager that it helps Charlie too. 

Charlie rode the bus home Tuesday. There will be many more rides for him without us, and we want him to know, as much as might be possible, that we're always there with him, that we're thinking of him, looking out for him. Loving him.

O New York Times

Autism: A Disease of the Rich? is the title of a New York Times Freakonomics blog post on this PLOS One study, Socioeconomic Inequality in the Prevalence of Autism Spectrum Disorder: Evidence from a U.S. Cross-Sectional Study. 

Oh gawd.

Sure, families with more economic resources are more likely to have access to doctors, school services, therapists, information and education that might lead them to suspect and seek out an autism spectrum diagnosis for their child, and then to be able to provide that child with supports and services. 

In the effort of providing such (services, supports) for our particular (lovely, autistic) child, it would be inaccurate to say that we have become richer, in an economic sense. Let's not even bring up having dental surgery under anesthesia at a hospital to get 'routine dental care' performed; maintaining two residences for a few years (that is, paying mortgage + rent) so Charlie could attend an in-district autism program whose personnel in the end decided that he should be, at least temporarily, institutionalized; paying up various bills for home repairs (plumbers are not cheap, especially if called repeatedly), car upkeep, etc., etc.. 

And I'm not even throwing in bills for private ABA/speech/occupational/physical/ETC. therapy, or the rate we paid sitters when we could find people to watch Charlie. 

If we were 'rich' and then Charlie got diagnosed with autism---a correlation suggested by the New York Times Freakonomics blog post's irresponsible headline---then allow me to suggest a few corollaries.

If autism is a disease of the rich, this is a good thing, as you would otherwise become poor paying for all of the above.

Or perhaps more accurately:

If autism is a disease of the rich, it is more technically termed a disease of the financially-strapped after a child is diagnosed. And let's not get started about the employment options, or shamefully huge lack thereof, for many adults.

Or metaphorically:

Autism is a disease of the rich, in what is very much a figurative sense. We are by no means an economically over-endowed household but lemme tell you, every time I see Charlie zooming down the street on his bike, swimming out in the ocean, and just walking through the rooms of our house jabbering away in his one- and three- word utterances, I feel like I've been handed a million dollars.

Yes, maybe autism is a disease of the rich after all.

O New York Times, I know you can't be all that wrong now, can you?

Tallying Up

 Friday was a 7 to 7 kind of day. Charlie woke up at the completely reasonable time of 7am; did well at school (enjoying a trip to the library in the afternoon; doing good with the helmet fading program---he's been going without it for increasingly longer increments of time in the middle of the day); waited patiently while we ran some errands; went on a short walk; used the computer; did a little grocery shopping; asked to use the computer again and then told us "bedtime." And went to bed. And fell asleep by 7.30pm.

I think he's still catching up on his sleep after Thursday's very early wake-up and even Tuesday's not quite as early start to our day. As I reflect on things, it's often the case that it takes a couple of days for Charlie to recoup himself---it takes a couple of days for disruptions in the usual scheme of things to run their course in him. As it is, I've the sense that we're fortunate that Charlie does sleep for at least couple of hours every night. We have friends whose children only sleep for an hour or two at a time on a regular basis, or who wake up at 3 or 4am every single day.

Getting some sleep is a bit more of a concern for Jim and me now as we're both back to work teaching and that fuzzy-headed feeling isn't really what you want when trying to explain the passive voice in Latin to students who don't recognize the passive voice in English. Charlie must detect the little extra sense of rushing around, of us making sure that we have our books and materials and constant checking of the clock to make sure we won't be late for our classes.

There have been times throughout Charlie's life when I've wondered if all the stress of me working wasn't so great that it might be better if I didn't. I'm able to set up my teaching schedule to drop him off and pick him up at school or to meet the bus; I've still had many a hair-raising drive back from Jersey City when there was traffic or I couldn't extricate myself from my office fast enough. There's no one here to stay home with Charlie should he get sick so one of us has to cancel class (I was occasionally able to take Charlie to class with me when he was younger, but that became impossible years ago). Jim teaches in midtown Manhattan now but for some years he taught in the Bronx so he had a much, much longer commute. 

But thoughts of not working are always passing ones with me. I like to work and the numerous responsibilities of my job, while at times causing some of the above-noted stress, have ultimately helped me in taking care of Charlie, precisely because my job---teaching Latin, ancient Greek, and classical culture at an urban Jesuit college in Jersey City---requires me to think about something other than autism, IEPs, treatments and therapies. Charlie being an only child, there's so much focus (as in, pretty much total focus) on him, and I more than think it good that he understands, Jim and I both have other things we do. 

And, to be quite honest, I'd probably be seriously more strung-out without my job because of the additional financial stresses we'd have without my salary. Yesterday's New York Times had a piece on the "dealing with the financial burden of autism" that reminded me of why I feel so fortunate that, for almost every year since Charlie's diagnosis in 1999, I've been able to work at least part-time (Jim, of course, has been working the entire time, while often enduring some crazy commutes as we've tended to live where the school situation was best for Charlie, but not for a dad who rides the rails to work). We've spent quite a bit in the interests of our boy, from the early days of providing for his in-home 40 hours/week ABA program, to various therapies, to visits to medical professionals most of whom aren't covered by our insurance (I have, though, gotten better at filing claims over the years), to renting an apartment in a certain school district so Charlie could go to school there, to random extras (the plumbing bill, for one thing, from the days when all manner of colorful plastic items went missing on a regular basis).

I still prefer not to think of all this, and of autism, and of Charlie, as a "financial burden." As I wrote when a study was published estimating that it costs $32 million to take of an autistic individual over the span of his or her lifetime:

Every $ my husband Jim and I have spent, are spending, and will spend on Charlie is the best thing we could do with our money, down to the last penny, and not to “recover” Charlie from autism.

Because he’s Charlie. Because he’s worth it.

Frankly, we would have spent quite a bit on Charlie regardless, just as my parents did for my sister and me. One could (rather facetiously) argue that, things being as they are, Charlie saves us a bundle in not demanding the latest electronic gadgets (I'm still setting up the iPod Touch my parents got him for Christmas; he prefers the battered case of CDs); new Nikes or any sort of "in" clothing; tickets for this or that; who knows what kinds of lessons; and on and on. 

And ok it's a cliché, but life with Charlie has definitely taught us that it doesn't take much to make you happy. In our case, Charlie not getting all upset when the CD player in the white car is not working. And: A good school day. A good day at home. A string of good days---but let's not gild the lily; one day at a time.