Family and Office Roles Mix, yesterday’s New York Times noted:

But workplace roles and the dynamics among colleagues can go much deeper than those somewhat superficial stereotypes, especially in a nation where many people spend as much time with colleagues as they do with their families, where the office so often mirrors the family.

A nanosecond to guess which role I fall into……..

(Hint: Yesterday afternoon, upon entering the building—it’s an old house—where my office is, I confront a huge puddle of coffee and my instant reaction is…………….. I start unfurling paper towels and mopping it up, while a student waiting to talk to a colleague looks startled and then says “I can help!”)

I wasn’t feeling well yesterday (better today). I put together a very perfunctory dinner for Charlie—-vegetables, shrimp, and some rice—and sat beside him while he ate. Once done, he put all the dishes into the sink and then stood with one elbow bent, looking towards me.

I surmised (correctly, as it turned out) that he wanted more to eat. As I felt woozy, it seemed best to stay in my chair and, after finding out that Charlie did indeed want to eat more, I requested him to: get out some rice that was in the refrigerator, put it in the microwave, turn it on for a minute (he did 1.23 seconds), get a plate, get a spoon, get the rice out. .All of which he did, and fluidly, readily. And then he shut the door to the microwave and closed the cabinet doors and sat down at the table, and ate.

I felt well taken care of.

Charlie can read some words and he’s not one for books. He’s been through a number of special-ed reading programs and has tried several software programs, with the former being a bit more successful for Charlie. He does not sit long when I open a book to read to him.

Tuesday after a very good swim (a couple of laps, at my encouraging) and an early dinner, I took out The Giant Ball of String, which my friend had given to Charlie. He sat for a page and was off—-I waited a while, got up, sat back down beside him on his bed where he was smooshing his face into some fleece blankets, and opened the book up again. “One spring night, a heavy thunderstorm flooded the creek,” I read (it’s bad news for the ball of string, as you can imagine) and Charlie repeated the whole sentence. He hung around for a page and a half more, than made me laugh by falling off the bed and telling me (suppressing giggles) “I need help!”

It was just a a few pages read out loud from a picture book—-but still, there’s power in books.

Daycare. And, afterschool care.

The very idea of these have long seemed a luxury to me. There’s basically five people on this planet who’ve provided these for Charlie: My parents, our speech therapist who we’ve known since she was in college, Jim, and me. As my parents live in California (they’re retired and can visit a couple of times a year, for extended periods), and the speech therapist has a full-time job, does Early Intervention, and much else, basically our daycare/afterschool care team has consisted of a total of two people: Jim and me.

This is not for lack of trying to have Charlie in such programs. In fact, it was because Charlie was in daycare (an on-site facility at the St. Paul university I was then teaching at) that his developmental delays were noted when he was a year and a couple months old, and that he was diagnosed with autism just as he was turning 2 years old. Seeing Charlie all day long among other children his age made it very clear: He’s different.

Jim had a sabbatical when Charlie was 2-3 years old and was the parent who was home for the much of the time that Charlie did his first year of intensive ABA. I took a leave from my job the next year (and ended up eventually resigning from the job). After we moved back to New Jersey, we tried Charlie attending a daycare center for a few months; it was a friendly, very lowkey kind of place, everything worn and a bit sticky. Charlie did ok for a few weeks but mostly ended up walking back and forth in a corner of the playground kicking at the dirt and we took him out, rearranged our schedules, got used to rushing home. A few years later, a neighbor met Charlie twice a week at the bus; this again went sort of well amid some really harried moments, one involving the hard surface of our porch.

The one local after-school program for special needs kids that I could find was in a sort of warehouse space, with a bare concrete floor, an aging tv set, and some tables and old couches. The staff were pleasant, but were usually talking to each other when I picked up Charlie, running back and forth in the huge space; all the other kids were sitting quietly at the tables. After a hair-raising phone call from the bus driver when Charlie refused to get off the bus to go into the center (two staff members were unable to get him off; our speech therapist friend was able to get to the center before me and took him home in her own car), we knew that was the end of Charlie at that center.

At this point, for Charlie to be in an after-school program with kids his age, we’d have to find a center that would take a child who needs (at the age of 11) constant 1:1 care, find and hire our own aide. Working out schedules (and driving home really fast) seems to be the better, or the pretty much workable, option. I know we’re hardly alone among parents in struggling to find decent, affordable daycare. Unlike other children, Charlie will always need someone to meet his bus and supervise him—this is one area that he can only so independent in.

An article in the July 5th New York Times about Google’s “fumble” in providing daycare to its employees—-for one thing, a plan to raise the price from around $33,000 to $57,000—reiterated how important, and emotional, an issue care for one’s children can be. Much of the concerns of the Google parents concerning daycare are far from anything I’ve had to worry about for Charlie (such as making sure the “hot kiddie philosophy of the moment,” Reggio Emilia, is used) but talk about waiting lists with hundreds of names in front of your child’s rings a too familiar bell. And the stress and strain of parents wanting to give their kids that good foundation is more than familiar to me,  a long-time veteran of Early Intervention in manifold shapes and therapies.

I’m more than glad I’ve been able to spend so much time with Charlie day in and day out; I’ve been able to teach him lots of things and I’ve learned a lot in the effort. He’s my trusty compantion, my good friend. But it seems something more than funny that something so essential (at least to this working mother)—-a safe and friendly place to leave a child so you can work (to pay for the daycare, for one thing)—is talked about as a “perk” and even a “luxury.”

A judge has upheld the restraining order barring 13-year-old Adam Race from attending church in St. Joseph’s parish in Bertha, Minnesota. From KSAX:

Todd County District Judge Sally Ireland Robertson says 13-year-old Adam Race engaged in “repeated harassment” while attending services at the Church of St. Joseph.

Robertson says Adam’s family has been unable to prevent him from disrupting church services.

The ruling on Monday follows a hearing last week that Adam’s mother had requested to protest the restraining order. Carol Race says many of the claims in the restraining order are not true.

I’m not sure that “repeated harassment” is quite the right phrase: While Adam’s behavior in church may have made (did make) others uncomfortable and then some, “harassment” implies a certain kind of intentionality, and it’s not clear if such was the case.

Yesterday, Carol Race took the stand at a hearing in Long Prairie, Minnesota, over the restraining order filed against her 13-year-old son, Adam Race, by the Church of St. Joseph in Bertha. From WDAY.com:

[Carol Race] represented herself at Tuesday’s hearing, and questioned the Reverend Daniel Walz for about 30 minutes.

Walz acknowledged that he did not witness all of the alleged disruptions, but said he believes they happened.

Judge Sally Ireland Robertson took the matter under advisement and said she would rule later.

Afterward, Race said she was disappointed that she wasn’t allowed to question the priest about his credibility. She said she and her family will return to the church if the restraining order is lifted.

While the scientific evidence refutes a link between autism and vaccines, parents of young children can’t seem to stop worrying about this and (as a June 18th CNN story reports) are wondering: Should they vaccinate their baby? Should they space out the vaccines and have a child receive their immunizations for measles, mumps and rubella separately, rather than in one vaccine, the MMR?

A new book, Do Vaccines Cause That?! A Guide for Evaluating Vaccine Safety Concerns,provides sensible and straightforward answers to these sorts of concerns. The book is written by Martin G. Myers, M.D., and Diego Pineda, the editor and the science writer for the National Network for Immunization Information (NNii) and the co-authors of more than 80 peer-reviewed articles on immunization issues. It might seem to be common sense, for instance, to give a young child one vaccine at a time and “space the shots” out; parents worry at the thought of giving multiple shots to a small child. As Dr. Myers and Pineda note (p. 178):

So, can a child’s immune system handle all those vaccines?
The answer seems to be simple: yes it can.

* Even though an infant’s immune system cannot respond to all the different types of foreign materials (called antigens) in the same way an adult can, infants do have an amazing ability to respond to an extremely large number and numerous types of antigens. The number a child can respond to is many more than the number of vaccine antigens given in the early years of life.
* Because of newer ways of making vaccines, the number of antigens (substances that induce immune responses) in vaccines has actually decreased since 1980, even though there are many more vaccines given. For example, the old whole-cell pertussis vaccine contained about 3,000 antigens whereas the newer acellular pertussis vaccine contains only a few. So while we give more shots, the number of antigens that the immune system must respond to is actually many fewer than before.

The number of shots that a young child receives has often been noted with alarm; change the schedule! was a rallying cry among the Green Our Vaccines crowd. The book Do Vaccines Cause That?! addresses these sorts of concerns directly and, again, sensibly: The book is an antidote to what might be termed the current elevated concern (paranoia?) about vaccines being linked to autism.

And of course parents worry. Sometimes I think “worrying” is the default mode of being a parent, and not only the parent of a disabled child like Charlie (my own parents, I happen to know, worry plenty about their daughters and don’t get me started about what’s on the mind of Ngin-Ngin, my grandmother). But for a lot of us parents of autistic children, the worries can be pretty basic, and especially as we realize that our children may, and even will, need constant care and support to live and work for all of their lives. What happens not only to our lovely children as they get older but also as we, the parents, get older, develop health problems of our own; become ourselves disabled?

I was fortunate to be able not only to think about, but to talk about, these constant concerns on Thursday with the parents of older, disabled children. Yesterday I was on a panel at the annual conference of the Society for Disability Studies. The topic was Fostering Independence, Fostering Citizenship: Parents, the City, and Cognitive Difference and the other panelists were:

* Clare Dunsford, author of Spelling Love with an X: A Mother, A Son, and the Gene that Binds Them
* Ralph James Savarese, author of Reasonable People: A Memoir of Autism and Adoption
(* Jane Bernstein was to read from her book, Rachel in the World, but was unable to attend due to personal reasons.)

I know there is a huge interest and a need to talk about what causes autism; about how our children came to be as they are. But our disabled children  will be adults who are disabled for the better part of their lives. Talk swirls endlessly about how to prevent future children from having autism and other disabilities: But we live with disabled children every day, and we need to figure out how to help them live the best lives they can. How can we change and challenge society to provide more and better daycare for disabled children, and better caretakers for adult children who might need such—how can we improve quality of life for disabled individuals and for those who take care of them?

We all talked about how aware our children are of the environments they inhabit, contrary to notions of disabled children as being too “withdrawn” or “out of it.” I read about traveling around New York City with Charlie; Clare read about her son at home and discussed two poems about “idiot boys”; Ralph read some essays by his 16-year-old son, DJ. There were lots of questions, from parents of disabled children, from adults with disabilities.

Something Clare said has been resonating in my mind and I paraphrase her words: How could she (how could the parent of a disabled child) not love her (their) child—-and how exhausting was the every day experience of caring for him. And how do we keep on doing it?

It’s not easy.

Still I know that I would not wish things to be otherwise and would wish for Charlie to know that, however different and disabled he is and is perceived to be, he is our child and the child we are so very, very glad and grateful every day to have.

Theories of what causes autism will rise and fall, but great kids—great people—remain and endure.

With gas prices up, drivers push closer to the end of the tank and more towing services are getting called—–don’t think I can do this and strand Charlie and me on the left lane of the Pulaski Skyway!

Charlie’s teacher sent home a form about the field trips that are planned for summer school. I checked “yes” for all of them and then kept misplacing the form. First it found its way to my desk, gravitated atop the Language Master, and briefly completely disappeared. I wanted to stick it in Charlie’s backpack but he kept taking it out (he likes to put his favorite things in the backpack when it’s not schooltime—-photos, some small photo albums, 3 certain books).

Hence, my solution.

Yes, the form was handed in on the last day of school—though I did find myself running down the stairs to hand Jim and Charlie the flowers for the bus driver and aide.

Depending on what website you are reading, the past week, the first week of June 2008, will go down as The Week Vaccines Got Green, or David Kirby Went to Parliament and Briefed 1 MP, 4 Lords, and a few others, or a really good autism book was released in the UK, or I did something unusual and interesting on Monday that you’ll be hearing more of, or ……

This past week was Charlie’s last week in elementary school in the lovely stone building he’s been in for the past two years, and with the wonderful, amazing, kindly, supportive [insert superlative adjective here] teacher, therapists, and instructors who’ve been teaching him. Next week is a short week with two half-days after which Charlie has a few days off and then begins Extended School Year at…….the middle school, with a new teacher. Hopefully, some of the instructors (preferably one who’s very tall and runs after Charlie when he rides a bike in the school parking lot) will stay with the class.

Charlie’s teacher makes monthly home visits and this afternoon was the last. On hearing that she would be visiting, Charlie hung around by the door, his shoes still on and not interested in getting his usual after school snack (though he went right to the fridge after his teacher appeared). It was Field Day today—-in the past, this has been a tough event for Charlie as it’s meant (1) total disruption of the usual routine; (2) standing around in a field with the sun beating down; (3) getting a lot of physical prompting to do activities that he could not figure out how to do. This Field Day was very good—-Charlie climbed up a rope, threw water balloons, didn’t mind one bursting on his head.

His teacher and I also went over his progress report and I’m hoping to go visit his class one last time—Charlie’s been learning to go up to each instructor and student in his class, get their attention, and ask to do something together. He’d been doing double-digit addition with a calculator last month but is back to single-digits—-he kept forgetting to input the second number with numbers like 32 and 66. His teacher has been with Charlie for a year and a half and she and I know that, when Charlie starts to get stuck, he tends to just keep making the same mistake despite all efforts and then Major Frustration ensues. So it’s best (as his teacher judged) to step back and work on something that he feels confident in. And after some times passes, Charlie relearns whatever he was having trouble with and even better than before.

We all have not been making a big deal about Charlie’s soon-to-occur change to middle school. His whole class is moving up together (Charlie is the youngest, and the tallest) and he seems to really like the other students a lot. His new teacher has visited his classroom a number of times and she actually already knows Charlie: When we first moved into the town we now live in, she was his teacher for a couple of weeks and she was so helpful and went out of her way to get to know Charlie and strategize his transition. There’ll be lockers in middle school, and a different bus, and an earlier starting time (7.45am—-Charlie currently starts school at 9am). Charlie is in a self-contained classroom so he won’t be switching rooms for different subjects but they’ll be a whole new school geography to learn.

That’s the kind of story I find myself coming back to again and again—-the accounts of kids, of people, living out each small moment of their life, poking out one last drop of ketchup, handing his dad his bike helmet so they can get going for a ride, lining up two black shoes to wear for school tomorrow, making sure the lunchbox is on its shelf in the refrigerator—the details of life with autism, every day in and out.

When Charlie was first diagnosed, one of my biggest questions was simply, what’s it going to be like to live each day with my son who’s so different?.

And I can say that it’s very good, thank you; crazy, hectic, fun, chaotic, exhausting, happy, and this is why it’s not theories of what one particular thing might have caused a child to become autistic that merit the most discussions. Theories and hypotheses and fad treatments will come and go like celebrities and sound bytes, but Charlie’s got a lot of life ahead of him, and the story’s just begun. So rather than focus obsessively about one possible of autism—-vaccines—onward with the further adventures of one great autistic kid.