An informal survey conducted this morning in our dining room revealed that nine out of 10 arguments between me and Jill begin over autism.

Alex had been squatting on the floor last evening, flipping through a big hardcover about knitting. Fine, except he hadn’t picked up when asked (with him it generally takes about three requests, which to be fair is probably about what you’d have to fire at most kids), and I had tripped over this hardcover one too many times. So I tried to cram it back onto the bookshelf just as Jill grabbed her keys and we got ready to head out. Except there was another book jammed on top of the other books on the shelf, and I had to take it out to get the big knitting hardcover to fit.

Image: paloaltosoftware, flickr.com

“Jeff, what are you doing?”

“Trying to put this book back!”

“Stop snapping at me viciously!”

How would you like me to snap at you?

Snap we do, and often the root not that Jill and I don’t like each other at that moment, but that we’ve somehow crashed over something Alex did because he’s autistic. Books on the floor, something in the trash, some favor undone or something put somewhere it would be only be put if you didn’t care what your spouse thought or you were trying to put out other fires at the time.

“I did it/didn’t do it,” I told Jill once, “not because I don’t care what you think, but because my autistic son was doing something at the time that I had to pay attention to.” What she and I fight, without break, is the inclination to snap at the person who will give us some response: me or Jill, and not Alex. Alex who will react eventually, but not as fast as the spouse will.

Jill and I had a row like that the other night. I did/didn’t do something, and she snapped, thinking I just didn’t care. “Don’t yell at me for something Alex was responsible for,” I said. “We can’t make it if you do that.”

It’s three days later now. For the life of me, I can’t remember now exactly what the problem was.

***

The Autistic Family Life Cycle: Family Stress and Divorce, from a past ASA conference.

Autistic Children and the Strain on the Marriage.

“A cat had a birthday, and all the cats came…” — From the video “Dance Party” from “Sesame Street”

June already? Alex’s birthday looms. Number 11th. The other day, I watched Jill and Alex walk away hand in hand in the park and he’s almost up to her neck. Amazing, considering he started at about the size of a G.I. Joe.

Image: Spudballo, flickr.com

We hold his birthday in Central Park, in a playground with a cozy gazebo (”cozy” meaning one point of access, and only one point to protect from Alex bolting). We decorate it, relatives come, maybe even a few friends from school this year. Amazing.

Amazing too that I’m stumped for a gift this year. Last year the boys and I were building plastic kits, so I got him a three-pack of jet fighters. I figured it would be the hit present of the party, but that honor went to a toy microwave oven, I think, from Aunt Julie and Uncle Rob. It was pretty cool, though eventually Alex and I built all three jets.

Don’t live in the past. This is number 11, and I’m stumped. It’s not like I can just ask Alex; like so much with him, it’s guesswork. It doesn’t make me feel like a bad dad by any means, but I do wish I had a bead.

Speaking of which, he loved stringing some beads with Ned the other day. Maybe a jar of those. Maybe a book. A Twitter follower of mine suggests an MP3 player loaded with music he likes, the front runner of my ideas.

Jill also suggests: a picnic basket (already ordered); plastic animals (”eh,” she adds); toy vehicles (see “plastic animals”); and a balance board (”Ned thinks he might like it”). I don’t even know what a balance board is. They grow up so fast.

***

Tips on a birthday party for a child with autism, on BellaOnline.

“Alex, get dressed!”

Thank God he can do this himself now. “Pants, socks, shoes, a T shirt!” I call in the morning, and he vanishes into his room. A moment or two later he re-emerges in khakis, a T, with a mismatched pair of striped socks and his brown slip-ons in his hand. A moment after that, and another nit-picky task of parenting has been taken off my hands.

Parenting — and I think parenting of the typically developing as well as parenting of the autistic — was always to me a matter of being plunged into more work than I could ever envision, and step by step, day by day, being relieved of the jobs one by one. Toilet training was one (and boy did we get lucky on that one, largely due to Jill’s efforts).  Tooth brushing has been another example: Alex will brush his teeth by himself now, and to us has fallen the fine points of Waterpikking and flossing.

Alex’s gumption has expanded to include some hold jobs, too. He’s terrific at scurrying to put away folded laundry of his, such as socks, pants, and underwear. He’s pretty good at holding up his end of the bucket brigade that is putting away groceries in our house, helping Ned unload the bags and handing the items for Jill to storage (I take a supervisory role at these moments; someone has to). I did always think Alex would also love loading the dishwasher, since it’s kind of a jigsaw puzzle, but that hasn’t ignited in him yet.

Dressing has joined these tasks, but others remain, with people’s exhibit A being making his bed.

A tough and tight layout in their bedroom, I admit, and even I with that Jill terms “your gorilla arms” sometimes have trouble reaching behind there and tucking the sheets in, but surely Alex could help spread the thing up. Ned has sort of started doing this, when prodded (and prodded, and prodded). Maybe yet again Alex can be taught to follow Ned’s lead.

***

Antidepressants offer no relief for repetitive behaviors in children with autism, at Medical News Today.

photo courtesy of Bill Ward's Brickpile (flickr.com)

We had, a little informally at the beginning, Alex’s IEP meeting yesterday. I say informally, because it began as a sort of rap session about where Alex stands now and where he’s headed in sixth grade in the fall. A form went around at the end of 90 or so minutes with us all in the small hard chairs, when we had to all our satisfaction covered Alex’s goals.

In sixth grade in September, Alex will begin that period of education that leads more seriously to work. This period will head toward that eventual goal in a way more serious than in elementary school, where mostly he simply learned to work and thrive and spend his days in a classroom. Soon the real world will be a little closer.

His teacher and therapists went over what I think is a pretty solid set ofgoals for the next year:

Speech: More listening and comprehension, more concentration on the people in a picture of a group. Uttering more sentences that contain a subject, verb, and object, and using more attributions such as sizes, colors, and shapes. More of what I termed “assemblying” the vocabulary he’s built.

Math: More times tables, specifically the 2s, 5s, and 10s. The ability to tell time and count money (Alex currently must count the change on Friday afternoons for admission to a video at school). (It floored me that he was doing times tables; I’m afraid he and I have never moved beyond that pivotal moment now years past when I was getting him to write C’s and he tried to hand me the pencil and I said “You do it.” That’s become his homework catchphrase since, usually accompanied by handing the pencil back to me.)

“I want him to start carrying,” his teacher said, adding that Alex will often tally when asked to do math, and other times just “doesn’t seem to feel like it.”

OT: His handwriting has greatly improved, if his accuracy hasn’t. He aced the memory and orientation parts of letter-writing, but bottomed out on control, placement, and letter size tests. In other words, Alex found the light-blue lines evasive targets. They want him to continue keyboarding and doing well on a computer program where he finds objects and the computer tells him if he guessed the right answer. Sounds like the workworld to me.

About a year ago,  Alex broke our oven door. He did this by standing on it in order to do something (probably turn on the light on the range hood). I heard a curious squeaky unhappy hinge kind of sound and went into the kitchen. I won’t say “ran” — because I was sitting at the computer, which is about four feet away. We live in Manhattan, after all.

photo courtesy of LePetitPoulailler (flickr.com)

The oven door was open and hanging at a very unusual angle. I looked at Alex, I screamed at Alex, I questioned him intensively but he never could or would tell me what happened. All I know is, one minute we had an oven door that would close and the next minute we didn’t.

The appliance repair people said they’d come in a week. Then parts would have to be ordered. So we were looking at a few weeks without an oven. I complained to a friend of mine in an email, and he asked, “Who was watching Alex?” “Uh… I guess I was.” “Good job!” he fired back. Angry emails ensued, and he never apologized for what I saw as an insensitive remark or expressed any sympathy for having a son who, at age 10, still had to be watched most of the time like a 2-year-old.

We have since reconciled, but I was pretty hurt. All kids do stupid things, I know. And all parents have moments when they wish they could go back in time just 10 minutes (or even 10 seconds). But our kids do some unusually unpredictable things. Abandon their sandals and stroll out of the playground. Stand on an oven door. Run screeching down the hall of our apartment building.

“It’s like living with an alien sometimes,” said Jeff. It’s one thing to know your friend’s kid has some unusual traits, it’s another to know how very difficult life is day to day.

The Interactive Autism Network (IAN) Project has released its Parental Depression History Questionnaire, in which parents share “their experiences of the challenges involved with raising a child on the autism spectrum.”

Part one of the report explores “stress associated with child-focused issues, such as challenging behaviors and erratic sleep habits.” Part 2 will address additional issues, such as the impact on finances or marital relationships.

I haven’t read the report — I’d like to, in the same way traumatized Vietnam vets wanted to see Platoon — but I have a feeling it reads like a template for a lot of lives.

“For many families,” the report opens, ”the experience of raising a child with an ASD begins with a feeling that something is not quite right. Perhaps during infancy, the child seems to be behind in development …” (”Jeff… he doesn’t look at me.”) “Eventually, as the feeling grows stronger, the family may seek a diagnosis to explain the child’s emerging, more pronounced autistic behavior.” Oh yeah, the doctor with the dolls, who didn’t take insurance.

“Whether the diagnosis comes earlier … or later … chances are the family is already under considerable stress. No aspect of family functioning is unaffected.”

Sounds spot-on so far. Autism jerks every aspect of our life like fish jerking a line.

The report (findings are still listed as preliminary) cover child behaviors such as meltdown and aggression; parent self-esteem and feelings of competency (I take the silent, seething, knitted-brow approach to such moments, and one teacher surveyed said her parenting experience “has completely blown my confidence” as a professional); improvement of behavior over time; “other people and their lack of understanding” (how long is this report?); sleep disruption and its exacerbation of stress (“well over 50% of the problem, I think,” said one mother, and “it’s literally killing my family” said another parent); and treatment issues.

“I am so tired,” concluded one parent, “of fighting.”

The report is well worth reading.

Image: IAN

My biggest fear for Alex right now is that one day he’s going to open his mouth and display a horror show of missing teeth, yellowed stumps and strange misshapen gums to the world.

Yesterday morning, I was watching Alex brush his teeth.  His usual method takes him about 10 seconds, so I started singing the Alphabet song to him to make him brush longer. Impatiently, I took the brush from him and did a little brushing for him. His back gums, which seem very overgrown to me, seemed a little puffy. Then his front gums began to bleed a little.

Maybe we haven’t delved deeply enough into special needs dentistry. So far, Alex has had annual checkups with the special needs clinic of an agency in New York City, and it seems kind of lacking. A few dentists have already come and gone during the last few years. One suggested we bring Alex in every few weeks just to get used to going there and sitting in the chair, but she left. I liked this idea - and think they should partner with their occupational therapists to teach kids to sit in the dentist’s chair. I hate to think of Alex being “papoosed” - a term they drop casually, like it’s just a hit of nitrous oxide.

Don’t know what the papoose board is? On this site, I see a caution against going to dental practitioners that use it or other restraints - which makes me uneasy and unhappy. What kind of  subpar dental care have we been subjecting Alex to?

My answer to what might be an incipient gum problem (and I hope it works) is the Water Pik. (An aside: I’ve had my own adventures in dental issues, and I’m a recent convert to the Water Pik. “Your gums look great!” my hygienist said, a few months ago.) So yesterday I filled it, got one of the extra heads, and set the dial on the lowest setting. I let Alex feel it on his finger. So far, so good. A few giggles. Then I tried getting him to put it in his mouth. Not so good. However, he did give in eventually and let me put it against his gums for a few seconds.

We did it again last night and this morning, and my plan is to just keep doing it over and over, using threats and bribes as necessary. (I have cookie dough ready to go, even as we speak.)

Jeff sent me a link to a video that shows a dentist helping a child with autism get use to the dentist’s chair, and I can see it’s going to take a while. Will it be difficult? Sure. But, all I have to do is recall a man I see on the bus now and then. He’s developmentally disabled. He’s always with his mother. His mouth is one of the saddest things I’ve ever seen, and I’m sure it’s because he was frightened of the dentist when he was small, and no one was able to find a way to make him unafraid to open his mouth.

“We fear for Alex as he grows up and maybe comes to depend too heavily on a system that was built when there was a lot more money around. Is there a reason to suppose that a money shortage is going to abate just because Alex is closer to 21 years old than he used to be?”

I wrote this in my second book. For a long time, I thought I was the only one thinking this way. Then I ran across the recent piece by Linda Davis, who in addition to being the author of Charles Addams: A Cartoonist’s Life, is president of the nonprofit SAGE Crossing Foundation, which was formed to create a farmstead for autistic adults. David and her husband wrote what should become a classic piece to every parent who fears for their growing special-needs child.

“What coming social expenditure will cost more than a third of this year’s budget for the Department of Health and Human Services and be larger than the entire current budget of the Energy Department?” the authors posed. “Answer: The bill for the tide of autistic children entering adulthood over the next 15 years, an estimated $27 billion annually.”

Image: artnet.com

Read this thing (available on site, among others, at http://www.concordmonitor.com/apps/pbcs.dll/article?AID=/20090407/OPINION/904070328). Among the points: the number of autistic children expected to need extensive adult services by 2023 is roughly equal to the population of Minneapolis; most of these cognitively impaired citizens don’t vote, can’t live alone, or can’t work in public places; and, perhaps most critical, “the wrecking ball swinging at all levels of social services” may alter what we assumed was the standard care in their future.

I grew up thinking that if you’re sick or impaired, someone will take care of you. For years, not being sick or impaired, I assumed it’d be the government (my parents loved FDR). After Alex, I assumed it’d be one of the agencies in the sub-strata of support that seems to have mushroomed below the federal level.

A few years ago, though, I began wondering deeply and often what budget will be left unaxed to help Alex the young adult. I live in a city, and as I passed the doorways and the park benches, not looking at the men living there, I began to wonder more.

“I understand that no one wants to look at a child and imagine the clunky, in-your-face adult he or she will become,” Davis writes, wondering “who will love or at least protect (her 22-year-old son) when he ends up in a group home run by an underpaid, overworked staff.”

Jill tells me, when I mention my fears for Alex’s fate, that she’s the one person on earth - Alex’s mother - to whom I can’t voice this wonder. And I can’t, and then I feel lousy when I do. But somebody should start wondering, and soon.

Recent I joined a sped educators’ board over on LinkedIn recently, “Special Education Innovators.” I’m not a special educator but I like to think some of them would like to have a parent’s perspective now and then.

Discussions are half the fun of LinkedIn groups, and when things are slow I like to pose a question. So I posted: “What’s the best and worst thing for educators when it comes to dealing with parents of kids with special needs?”

Image: usgarchives.net

I got two responses, both insightful.

“The Best?” replied one group member, “Concerned parents who are honest with themselves about their child’s needs. They are generally better informed, and maintain a healthy collaboration with educators and related service providers. The Worst: An aggressive, uninformed parent who comes to school once a year to make unreasonable demands for academic results. They rarely even check their child’s bookbag for teacher communication. Parents who work two jobs, group home guardians, and unconcerned parents rarely make any contact with professionals.”

(Two jobs? Will this economy spare no aspect of our lives, not even parent-teacher conferences?)

“The best thing you can do is stay informed and involved in your child’s education and have realistic goals and dreams for him or her,” replied another member. “Also, make sure your expectations for the teacher and school staff are reasonable, as well. Most teachers I know welcome open communication between home and school and an informed, supportive parent is wonderful. The problems come when the parent becomes so focused on his or her child that he or she forgets the teacher has other students for whom she’s responsible, as well as other school-related activities, and begins to put unreasonable demands on the teacher’s time and attention.”

We’ve tried to adhere to these rules with Alex and his teachers. We send at least as many notes back to school as we receive, and have often been the ones initiating exchanges. We slate our parent/teacher conferences outside the set and regimented days and hours, as long as his teacher agrees, because we figure it gives the teacher more time to talk to us and more brain space to think about Alex. Jill also teaches knitting every Friday morning in Alex’s class, so gets a chance to see how he’s doing real and close up.

The Alex we’ve seen in the classroom - velcroing the right date to the wall calendar, leading the “Pledge of Allegiance,” taking classmates by the hand - is often heads above the Alex we see at home, where every afternoon off the bus he just wants to shed his khakis and munch a few pretzels on the way into evening. The Alex we see in the classroom, I like to think, is more like the grown-up Alex we’ll someday launch into the world. Seeing him this way is well worth shuffling the schedules and making time to stay informed. Hope it stays that way after one of us has to get a second job.

Sometimes when I wish I were writing on some other topic - knitting, say, or clutter - I think how those subjects can find their way via a twisty path back to Alex. Take knitting. Decades passed before I knit anything, and when I picked up needles again, it was because Alex had arrived and was in the hospital, and I was stressed and wanted to make him something.

Wild Foote sock yarn/Deb Roby

More years passed, and I picked up needles again about two years ago to make mittens for Alex and Ned because I’d read them The Mitten by Jan Brett, which reminded me of the great mittens my grandmother used to make for me. (I can’t find a picture of these awesome skunk mittens. Will have to take a picture of the ones I made.) This triggered a full-on knitting mania, which has stuck mainly because, I think, it’s so soothing. It’s my yoga, I tell people. It’s how I stay calm.

Inside, however, I’m not calm. I’m tense. I’m worried about Alex, I’m worried about money, I’m worried about his future and I’m worried about mine. The only time I’m not worried is when I’m knitting. So I guess that’s why I’m doing it a couple of hours a day.