Photo by Me-Liss-A (flickr.com)

Replies continue to come in on the question posted on another forum, “If you could say one thing to your relatives about your autistic child, what would it be?”

“Have empathy,” said one respondent. “”He’s still family. Don’t forget he exists,” said another. And still another: “Open your eyes!”

“Do not be afraid,” one reply said. “Do not feel sorry for us or our child. He is the greatest gift/blessing we could ever have in our lives. We are happy we were chosen to care for this person.”

“My wonderful Aspie is now 16 years old, and we have overcome so many hurdles,” one respondent said. “If I
could turn back to yesterday, these are some of the things that I would have said: ‘It is not my lack of discipline that has made him this way and I don’t appreciate being told that is it poor parenting.’ ‘It’s okay that you didn’t invite me to family get togethers because my child is too high-strung. Someday when he is older you will regret your decision to exclude us all those times’ (and they did regret!). ‘Yes, I have to remind him to say “thank you” when you give him something. It’s not that he is spoiled, rude, or ungrateful. It’s just that sometimes he forgets our social standards.’ I couldn’t stop at just one comment either!”

With an eye to celebrities and debate: “Please stop judging our love for our child based on our (un)willingness to try every anecdotal therapy you hear about from Jenny McCarthy or Oprah.”

“Love him because he’s different,” said another. “He’s no one to fear and deserves the same love and respect as his siblings.”

I’ve always liked to think people liked me because I was different.

***

Autism Speaks Family Services has released its Autism Safety Project, which provides first responders with information and guidelines for communicating with individuals with autism in emergency situations.

Our summer plan calls for water parks.

Image: Spakattack, flickr.com

We still don’t know how Alex will react to not going to day camp. Much more important than the cost of savings was that Alex has always seemed to enjoy few parts of camp. Camp theme days seemed to leave him cold. He’d often get out of the pool before swimming was over; he’d spend a lot of arts and crafts period running from light switch to light switch in the cabin; he seemed okay with concept of baseball, but always wanted to carry around the ball, bat, and glove (they are, after all, a set). The staff was great, the camp lush and lovely, and his shadowing counselor was, I think, his first crush. But all he ever seemed to like at camp was Flying Squirrel, a bungee-like contraption that bounced kids high in the air.

He seems to love school, however, and sped summer school in New York is a lot of play and recess anyway. Surely he’ll be okay with that (even though three years ago he cried on the first day of summer school)? I do wish we could ask him, but as usual with semi-verbal Alex it’s a matter of guesswork, watching sharply for clues, then probably getting it all wrong anyway.

He sits on the couch and silently flips through last summer’s camp scrapbook. “Summer school this year, Alex,” I say. “You’ll go to school and we’ll do stuff on the weekends.”

Coney Island’s water flume was always a favorite. Alex’s rec programs have also gone to water parks (so did day camp, occasionally). He would sit patiently in the front of the big log boat and wait for the heart stopping drop and tidal wave splash at ride’s end. A whole park of such rides should ease the pain of no Flying Squirrel.

Our plan calls also for zoos, beaches and seaports of Connecticut and Rhode Island, fire museums. Maybe we’ll even run him out to Sesame Place and watch his little mind be blown by a 6-foot Elmo.

“Alex, school this summer.”

“School,” he says, flipping the pages of the scrapbook.

***

See these options and tips for summer travel and vacations with people with autism.

I’d decided to drive the family to Providence to see my old college advisor and his wife. I hadn’t laid eyes on them in more than a quarter century, and they’d never met Alex. They knew about him from my books, and I remembered them as terribly sweet and supportive people, but they’d never met him and for brunch all I knew was that we were going to be eating in some place nice enough to need reservations.

My advisor and his wife escorted us to a dining room of sparkling glasses and white tablecloths and napkins. Therein were our reservations at a round table; I quickly and silently calculated that we could get the back of Alex’s chair no closer to the wall than about four feet.

“I’ve seated Alex between you and me,” I said to Jill when she walked in.

We had our tools: one of our hosts had supplied a box of fancy European cookies, I grabbed a handful of Saltines off the soup tray, and we had a small box of backup, good ol’ American Chips Ahoy. Plus we promised Alex to order bacon so he’d stay in his seat and leave the light switches of the dining room alone.

Brunching with us was a retired researcher of one of New England’s major autism-research centers. He watched me try to make sure Alex remained with us at the dining table (which Alex largely did through a grown-up meal: pretty impressive…).  “You seem to have developed a sixth sense about him,” the researcher said.

Except when Alex bolted into the other part of the dining room and got to the light switches. Jill brought him back. The researcher — who’s read and I think liked my stories about Alex — noticed that Alex had built toward that bolt, first leaning away from me then leaning away from Jill, then scooting. It helps to have another set of eyes on Alex.

And arms, as my old advisor reached out gently a few moments later and snagged Alex as he made another attempt toward the switches near meal’s end. More fool Alex: As Alex’s empty bacon plate was cleared, our hosts soon had the waiter bring him a dish of devastating chocolate-chunk cookies. That took care of him for the rest of the meal. When he was done, Alex wiped his mouth and fingers on a real cloth napkin.

***

An illustrated PDF about teaching table manners to a young boy with autism.

Image: SXC.HU, Tinneketin

If I had a nickle for every time it would’ve been nice in the last 10 years to talk to somebody who just plain understood, I wouldn’t be worried about being laid off.

Image: Flickr.com

Sandy Knollman, of the Comforting Ties Autism Support Group, offers these tips for starting and maintaining a group:

Q: Tell us a little about your group.

SK: It started in October 2008, and its first meeting was in December 2008. Members are parents, family members, educators, and some providers. The subjects are varied, but last month’s focus was education and making
it through the sometimes complicated school systems. I also passed out printouts of articles that I had found and that my friend Connie had found, and I gave information about Medicaid waivers available through the state of Kentucky, since that’s where most of the members are from. I also brought a copy of the Autism Speaks 100 Days Kit, as well as the University of Louisville’s Kentucky Autism Training Center Kentucky Family Guide to Autism Spectrum Disorders. The meetings are the first Monday of every month, 6 to 8 p.m.. The location varies, but we’re hoping to have a permanent meeting place once we get the autism resource center opened.

Q: How do you spread word of your group?

SK: By word of mouth, and announcements to local schools/family centers. Info is also listed on the Autism Speaks support group list, and on the Kentucky Autism Training Center’s listserv. Also, if someone asks me about autism, I always include that I run a support group and plan on opening an autism resource center.

Q: What’s the easiest thing about starting a group?

SK: Knowing and feeling like it’s the right thing to do, and knowing there’s a need for it in this area. I’m not afraid of putting myself out there; if you’re a shy person, it may not work. I’m normally a shy person, but talking about autism and helping to educate others about it is a passion of mine.

Q: What’s the toughest thing?

SK: Being away from kids for that long. I work full-time, and I’m gone all day when I have the support group meetings. (My schedule) is crazy, but so worth it! For the first time in a really long time, I finally feel like I’m doing what I was meant to do.

Q: Any words of advice for those looking to start their own support groups?

SK: Start small. Don’t try to make it too big from the get-go. If you do, you will burn out and the group will fizzle as fast as you do. Also, be passionate and willing to get calls and e-mails from people you don’t know. Also, talk to people about it. You never know when someone might know someone else that needs your group. You may want to provide refreshments. I started off bringing everything myself, but eventually someone else will volunteer to bring something and be willing to take the load (and cost) off you. Now, my
friend Connie makes some snacks to bring, and since my husband is a chef he makes an appetizer or two. I even had my boss make a cheesecake one time. Since the meeting time is 6 p.m., I don’t want people to be hungry. For
morning meetings, you may want to provide some muffins or granola bars and fruit. Something relatively cheap but also nutritious.

For more information, contact comfortingties@yahoo.com.

***

Blue Cross Blue Shield of Michigan plans to offer coverage of some autism treatments.

Jill sat reading in the good chair in our living room while I tried to coax Alex to pick up the sheets of his homework that had fallen on the floor. She sure seemed to be studying her book; Alex wasn’t exactly flying into the task.

“Can you help me here, Jill?” I asked, frankly too lazy to stir off the couch after just getting home from work.

She did, but added, “I’m steamed at you for letting me get up for Alex last night.”

“Why didn’t you wake me? You always have before.”

“Oh you were just SLEEPING!” She holds her hands to her cheek in prayer position and closes her eyes with elaborate sarcasm, then dives back to the book.

Jill and I split what we once called “night duty” (in blended tones of reverence and dread): The one who had to get up first in the morning didn’t have to get up to handle Alex if he woke up at night. So why then, somebody ask her, did Jill let me sleep? I would’ve gotten up with no more snapping at Alex and grumbling to the universe than normal.

What is normal in a sleep-deprived life? “Lack of sleep makes everything impossible” Jill has said, and it’s true. Can’t think, really, can’t plan. Once solid ideas fragment as you stumble through your day jet-lagged though you’ve flown nowhere.

I think Alex’s sleeping is getting better. Now it may a solid week before we hear his footfalls through the dark, like those of Mr. Marbles in that “Seinfeld” episode in which Jerry tries to sleep in Kramer’s apartment. Alex also used to stay awake for two hours or more overnight, giggling and laughing. (Granted, better than crying and moaning, but two hours?! Was that the best we were going to get to say in life?)

“You CANNOT yell at Alex in the middle of the night!” Jill has said. “I was HOURS getting back to sleep!”

“You’ve yelled at him too in the middle of the night!” I reply.

“But not like that!” she says.

No: The difference was I had to listen to it when you were yelling, trying to get back to sleep. That’s the difference.

Nonetheless, I opt for the hiss, SnakeDad urging his autistic boy back to bed at 2:23 by the green numerals on our bedroom clock.

We give him Melatonin (”God’s gift” as one parent of an autistic child once called it). We used to do two capsules at bedtime; lately Jill has tried one in the late afternoon, a second at bedtime. Out of sympathy, I guess, I take it, too.

“Retarded” as been used three times in the past six months aloud in my office: “That’s retarded!” “He’s so retarded!” “I’m not a retard!” Each time, the word flew right out of a cubicle, clear and loud, for all to hear.

Anyone older than 5 could imagine many words that would cause quite a stir – not to mention a lawsuit – if they flew with such abandon right out of cubicles. “Retarded” and “retard” don’t seem to be among those words.

I Googled the word and turned up some 18 million hits (down from more than 19.1 million when I Googled it two years ago, so that’s progress). Hits have included a band with the name, “retarded animal babies,” and “movie criticism for the retarded”, which on Google scored right ahead of “Declaration on the Rights of Mentally Retarded Persons”, so that’s progress.

Jill and I often think of how Alex looks to other people: on the street, in restaurants, at the airport and on the bus and the subway. Many people still look at Alex. Sometimes Alex notices them, sometimes not. Sometimes he answers them in a somewhat appropriate way if they ask him a question; sometimes not. “That’s the way they communicate,” one woman said to me once in a McDonalds, meaning autistic people, about whom she seemed to know something; I somehow thought it a kind observation, though I was just guessing.

Alex is a nice-looking kid. Dark hair and eyes. A killer glance when he makes eye contact. Slim, downright skinny; it’d be hard for most people older than 5 to see him as any kind of threat.

Not like the time an “older” guy from a special-needs high school in Ned’s school building got into Ned’s first-grade classroom. “He ran in and sat on the teacher’s chair,” Ned recalls, adding that he himself hid under his desk until somebody came and fetched the young man. A few days after that incident, when Jill picked Ned up from school, Ned’s teacher said Ned was great when the guy came in, telling her not to be scared and that the guy was just “sensitive, like my brother.” I like that somebody else had to tell me this about Ned, and I especially like that S word.

The New York Times reported yesterday that marketers are showing increasing support for the disabled. Special Olympics is also taking pledges from visitors against hurtful language (“Spread the Word to End the Word”).

Along with reading goes writing. I started with a hand-over-hand method with Alex months ago, helping him fill lines of wide-ruled paper with words of things he loved: Mommy, Daddy, Ned, Toast (our cat, who he doesn’t love strictly speaking), grandpa, Aunt Julie, Uncle Rob, Elmo. Actually, we usually put “Elmo” first.

I held his hand as lightly as possible in mine during these exercises, guiding him only when needed through the letters. I hoped eventually to work my way down to his wrist, then to his elbow, then to let go entirely. The job was filled with unexpected delights: Once when a cold was going around the house, I tried to get him to write “cough.” We got as far as the C and the O when Alex asked, “Cold?”

The problem came when I tried to remove my hand. Alex was once penciling a line of ABCs when I pulled this. He patiently put down the pencil and reached out to place my hand back on top of his.

“No, Alex. I know how to write ABC. You do it…”

“You do it!” he said.

“Alex, c’mon. You can write this.”

“You do it.”

I think we actually did once write a line of “You do it”s.

We’re trying to do more short sentences now. Jill gave him a toy cheese wedge over the weekend, which he almost immediately began to play with, pretending to chew and swallowing elaborately. (This is a proven tactic for eventually getting him to eat real food.) I grabbed a pencil and a piece of paper and wrote, “I am eating cheese.”

When I show him these phrases, scribbled as soon as possible after he’s done something he enjoyed or asked a question or made a comment, Alex stops dead. Sometimes he looks right up at my face.

He placed his finger on the first word and said, “Eye. Eye want…”

“I am…”

“I am want-”

“I am eat…” I say, and let him finish:

“I am eating cheese! I am eating cheese!” We need to move on to little stories.

Temple Grandin offered her take on teaching autistic children to write here.

FICTION FOR NATIONAL AUTISM AWARENESS MONTH: Autism in non-fiction captures many headlines, but the condition shows up in fiction, too. The Library Journal offers a rundown of titles here.

Happy 2009!

We’re leaving tonight on the red-eye to go back from the Bay Area to New Jersey so, in the interest of being able to spend more time in the California sunshine with my guys and my parents, and since it is, indeed, 2009, a few more highlights from 2008.

August means one thing in my household—-two weeks at the beach, at the Jersey Shore. Not surprisingly, it was still impossible to avoid talk about vaccines. A new clinical trial of the GFCF diet was announced. While people have strong disagreements about the “right” of parents to vaccinate or not, everyone agreed that the use of “retard” in the movie Tropic Thunder was unncessary.

Charlie started middle school in September and, by October, he was deep into middle school blues, and Jim and I found ourselves back into the old familiar advocacy mode, including meetings with teachers present and past, Charlie’s case manager, ABA consultants, school district administrators (but not, yet, “legal counsel” of the sort this family in Montgomery County (Virginia) has had to take).

Also in September: A 13-year-old autistic boy treaded water for 15 hours off the coast of Volusia County in Florida, until he was found the next day.

Another study showed that the MMR vaccine does not cause autism.

And, with Election Day nearing, the choice of Alaska governor Sarah Palin—whose youngest son, Trig, has Down Syndrome—-as Senator John McCain’s running mate got the (Special Needs) Mommy Wars going again.

In October, I (former warrior mom that I am) was on a Science Blogs book club panel writing about a newly published book, I get a lot of hate mail”: Autism’s False Prophets by Paul Offit. (And I’ve not been feeling that I need beware Jenny McCarthy and her so-called angry mom-mob; I know that someone’s watching over me.)

More to the point than “debates” about vaccines and autism was the passage of the mental health parity bill.

And then, in the middle of October, was the McCain-Obama debate in which McCain apparently confused Down Syndrome and autism, and after which I was interviwed on Newsweek about the candidates.

Around the same time, Denis Leary did a Michael Savage, Charlie seemed to grow taller every week, and David Kirby exonerated thimerosal, and as quickly said he hadn’t.

November brought a new theory about autism and genetics, another suggestion for identifying autism in infants (”strange play“), and more speculation about autism and schizophrenia as the same. A mandatory autism registry was proposed in New Jersey; researchers began to look for autism’s causes at home; and I attended the November 21st meeting of the Interagency Autism Coordinating Committee (IACC), at which the draft of the Strategic Plan was discussed.

December, this past month, began with Autism Twitter Day, organized by Bonnie Sayers; an exchange about some dangerous ideas about autism, and some events concerning autistic rights, from an autistic girl in Wisconsin becoming a Brownie after being asked not to return to a special needs Brownie troop, to calls for the inclusion of autistic individuals on the boards of autism organizations. (This letter states why.)

And some final thoughts as 2008 ended: What would you like to see in autism legislation? (Something besides insurance coverage for specific therapies.) And isn’t it time for vaccine talk detox? (Yes.)

So farewell to 2008 and onward into the new year, which I suspect holds some more changes all the time for Charlie, and which holds a big one for me, too—-but more on that tomorrow, once we’re back home in Jersey.

It is a Sunday (though I’ve kind of lost track of time, being away from home in California) and Jim and I are off from work, and Charlie from school. So we’re not having our usual rush and worry to get home in time to meet the schoolbus (though Charlie seeming to have more away from home holiday anxiety than ever before has meant there’s been plenty to keep us occupied). As Kajuana Ezell, whose 17-year-old son is autistic and who works as a senior administrative assistant for Prudential Financial, Inc., in Hartford, says about being the working mother of a special needs child:

“We want a career just like everyone……It’s just that our 100 percent may not be the standard 8 to 5. Companies that can’t give the flexibility, or allow us career opportunities, companies that aren’t open to change, we can’t work there.”

Today’s Boston Globe notes that some companies—-who’ve started to cover more services and therapies for those with disabilities—have been offering financial planning and parenting forums (via websites and conference calls, as well as live seminars) about special needs children.

Lost talent is one risk for inflexible companies. In nearly a quarter of families caring for children with special needs, one or both parents wind up reducing their work hours or quitting their jobs, according to government surveys.

One challenge employers face in responding is the spectrum of different conditions in the special needs community, from fragile health to behavioral disorders. As is often the case in the work-life arena, one size does not fit all. That’s why assessing employee needs regularly, and tailoring supports accordingly, is crucial.

I have to second Ezell’s point that about working 100 percent, just not in that “standard 8 to 5.” Parents of special needs kids talk about having to be “on” 24/7, and that can mean that we know how to be really flexible about getting things done, 24/7, too.

And here’s autism on a list of CNN’s top 10 health issues of 2008, with more than a nod to the vaccine issue …… and from Mark Miller’s special needs blog, his list of the “top 10 moments” in disability policy and politics.

Your top 10 of 2008?