AnonymomBlog

One month

2011-12-14T05:59:00.000-08:00

Image via WikipediaIn a single month, the ASD teen got a job, trained for a job, worked a job, excelled at a job, and quit a job.

A roller coaster ride for anyone, especially someone with Aspergers. And his Mom.

He was excelling, giving it his all, which is how he operates. He would come home feeling good, but exhausted. He missed some school, struggled to juggle & coordinate his three schedules (school, law enforcement exploring, work). (For those of you who don't have ASD or ADHD kids, this is known as an "executive skill" and is challenging for our kiddos.)

He double-booked himself one day, which escalated the issue to crisis stage. He struggled to manage, calling around to find a replacement. Striking out, he sank into a silence, emerging once or twice to announce "My heart says one thing; my brain, another."

Next day, he himself said, "There's too much on my plate right now. I took this job too young. Maybe I can handle it when I am 16, but right now, it is too much. I appreciate the opportunity and I even enjoy the job. But it is too much."

Which is essentially what he told the store manager. I listened from the hallway, as the manager expressed his disappointment and said, "Without giving 2 weeks notice, you will never work for this company again."

"I understand," said my son.

I do, too, now. I was disappointed. I was sad. But now that he's back in his pre-working routine, I see that it was too much for him. There was too much on his plate.

Thus we grow.

Feeling good

2011-11-06T09:47:00.000-08:00

Image via WikipediaI must be an OK mom.
Sent the ASD teen an email with a honey-do list of home maintenance chores. Without a word, he appeared from Xbox land, screwdriver in hand, and went about completing the list.
Ha!
This morning, without fanfare, he walked home from his Dad's place, a 3-mile hike he'd said "no-way" to when I suggested it last night. The day before he biked to and from Dad's to pick up a flashlight in my absence.
Who is this boy? Who is this woman?
Oh, and did I mention he got a job? A job, folks, bagging groceries. He is feeling might fine about himself.
So am I.

Watch and listen and love

2011-08-21T13:08:00.000-07:00

Image via WikipediaLast time I posted was 7 weeks ago when he went off to camp.
Today he's coming home.
I am one of the lucky auti-moms. With a diagnosis of Aspergers syndrome, my kid was at a place on the autism spectrum where his chance to thrive where greater; and, we found people, places and things that have enabled him to thrive.
So as he journeys home from Camp Kodiak in north-of-nowhere Ontario, I prepare myself as best I can for what's ahead. Whatever that is. Kodiak has been the best thing we've ever done for him and he comes home hugely changed. I'll have to watch and listen carefully to see who he is and what he needs now. In other words (I know this is not the first time I've written this), I have to grow as he does. I can't welcome him home from the camp the same way I did when he was 11 or 12 or 13 or even 14. He's a man now, a young man. He may be my boy, but I can't treat him like one.

Growing

2011-07-03T08:28:00.000-07:00

Image via WikipediaAnonymom is growing up.
Because as Diver/Elmer/Dude
has grown, mastering new skills,
I've had to back off. Pull away. Chill.
The hours/months/years that went into getting him what he needed-
Aren't needed anymore.
It's a blessing. A miracle. And for this mama of a child on the autism spectrum, a challenge.
Raising a child with special needs is all-encompassing. Now, by the grace of god, I'm unencompassed. He's just 15; not fully grown, but no needier than any other teenager.
Today he flew off to Canada, unaccompanied.
Which means I'm unaccompanied, too, and unencompassed.
Say what you like about raising our kids - and it is all-encompassing - it does fill up the days.
So this is new.
Now I pray for the skills to grow, just as he has.

Milestones, Stepping Stones

2011-06-26T10:57:00.000-07:00

Image by Getty Images via @daylifeBetter than morning coffee, a morning email:

"I just had to write because I ran into your son at the Fest tonight and I was stunned at his maturity and social skills. He shook my hand, and my husband’s, said that it was nice to see me and was just so grown up and poised! He was way more polite/mature than the average teen! You must be so proud! You have always been such a good and patient mom and it seems to have paid off!"

It was a big night. Nine months after joining the local law enforcement explorers post, Diver (Elmer? Dude?) was on duty with his post at the local summer fest. It was highlight 2 out of three he'd been anticipating since last fall, and by all signs, it was a rocking success. His week - his summer - was planned around it, and as they day approached, he began preparing; organizing gear, nutrition, sleep, rides. He came home at 2am this morning, having reported for duty at 2pm the previous afternoon. I was already awake. Even though I knew he was with the safest possible group, my old, over-protective auti-mama'ing had kicked in and I lay awake batting away thoughts of worse-case scenarios.

His only comment when he came in (quietly) at 2: "It was amazing. Good night."

The email I copied above is from his first social skills coach, who worked with him twice a week shortly after he was first diagnosed; back when he would rarely get off the couch, when he sometimes would not speak, when he was rarely able to tolerate other people and places; when he could not follow the rules of a game, when his autism ran his life.

He manages beautifully now. For that I a grateful to God and to all the grown-ups who have walked with us to help him on the right path.

Fifteen

2011-05-16T20:13:00.000-07:00

Image via WikipediaTomorrow he turns 15. Tonight he talked.
The Dude (aka Elmer) (previously, Diver) instigated the conversation himself, asking me to come to his room. There he remarked on the oddness of not being excited about his impending day. And everything else under the sun. He reminisced about previous birthdays, remarking on the number of toy fixations that have passed. He remembered more than I. He talked about how pleasant it is to reminisce. Then he asked if I remembered when he couldn't do more than request yes or no questions.

I remember. And here he is, chatting away introspectively like an adult. Without autism.

What is this but a miracle?

It's the law

2011-04-13T15:46:00.000-07:00

Image by conner395 via FlickrWhat could make this lazy anonymom blog after so long?

The Dude packed his meds.
All by himself, without my asking, he took out the multiple bottles and counted out four days worth of everything into a portable pill case. In my absence.
He's off to the four-day state conference of police explorers, which has taught him something strongly resembling discipline. He's a kid who never even tucked in his shirt, now spci-and-span in his pressed uniform and shined shoes. The non-nonsense, military structure appeals to him - a lot.

And today he packed his meds.

Milestones

2011-02-09T17:08:00.000-08:00

Image via WikipediaThat stone I've been carrying uphill these 15 years?
He's making his own now.
On the cusp of 15, the Dude has a wallet, a check card and a cellphone.
He needs me less and less. Tells me less and less. And teaches me lesson after lesson.
Today he came home from school and planned his evening: "I need to take a bath before Explorers, so I'm gonna play some xbox, then take a bath."
He's going to take a bath voluntarily?
"Do you need anything from me?" I asked.
"No."
And in short order, he played Xbox, took a bath, dressed, ate, packed his gear, screwed his courage to the sticking point and went to Explorers (currently a source of both pleasure and anxiety). He had a brief moment of panic when he realized he'd forgotten a permission slip, then took a breath and muttered, "Next week."
So he organized himself, took responsibility for his hygiene, managed his anxiety, and went out into the world.

Regent of the Interregnum

2010-12-29T11:52:00.000-08:00

Image by Eva Ganesha via FlickrWith history as my guide, I was worried about winter break aka the interregnum; that loosey-goosey period between regularly scheduled activities. Yet one week in, we're doing just fine. We've weathered two feet of snow, three days snowbound, the cancellation of an uncle's visit, the absence of volunteer opportunities, friends or family, and still, we're all right.

Anyone with a child on the autism spectrum knows the importance of routine. Our kiddos don't like a hair out of place. So in the past, school breaks felt like being on an ocean liner in a storm-tossed seas. Ay-eee! The Dude's frustration and discomfort cast a pall not unlike Darth Vader's.

Now, at 14, he is managing just fine. Doing more of the cooking. Taking care of the animals. Working the phone solo in search of volunteer opportunities. And maintaining TV-free dinner conversation. (Cue the angel choir!)

Today he's putting in his teens-are-only-allowed-1-shift-a-week volunteering at the food shelf while I soak up Mozart and sunshine at a coffee shop.

Days like today give me hope. I'mm'a hold onto this for the next time I approach despair.

Manly Man

2010-12-01T17:03:00.000-08:00

Image via Wikipedia"I haven't had one shaving cut," announced the young man formerly known as Elmer*.

He's only shaved once. But the 6'2", 200 lb 14-year-old is the picture of young manhood. The peach fuzz covering his cheeks and chin was getting out of control, so after a few day's urging, he took razor to cheek and did the deed.

Today he picked up shaving gel; "I'd better get two cans," he announced, "I'll be shaving again tonight."

"Shaving what?" I wondered, but did not say.

Because he is no longer *Elmer, the tween Looney Toons fan who wanted a pseudonym like MamaEdge's boys, Taz and Rocky. He is now Dude McDude; Dude, for short, a whisker-growing, deep-voiced, young man.

24 hours later

2010-11-23T15:20:00.000-08:00

What a difference a day makes.

Last night, in tears, I told Elmer he had to go to school in the morning. He didn't have to like it. He just had to go.

And this morning he went.

Oy in the Vey

2010-11-22T09:48:00.000-08:00

Image via WikipediaThere's only so much supermom -- or superkid -- can do.

We've been doing a rapid ramp-up to a new school. Today was to be Day One.
Elmer has been masterful at managing his anxiety; naming it, claiming it, coming up with coping strategies on his own. Even after a tough time sleeping last night, he scrambled to be ready for the bus at 7:20.
Which didn't come.
At 7:40, I called the bus company, which admitted and apologized for their error, and promised to have a substitute bus here ASAP.
Meanwhile, anxiety is eating away at Elmer like bedbugs; a worried face, intestinal distress, diarrhea and more diarrhea. When the bus finally arrives (30 minutes later), he is still in the bathroom. The bus idles,the gut churns, Elmer gets as far as the stairs; then anounces, "Nope. Not gonna' happen."
And so the best laid plans of Anonymom succomb.

Concrete Cooking

2010-11-17T09:57:00.000-08:00

Image by avlxyz via FlickrNow that's something Elmer would enjoy cooking: concrete.

That's how my Aspie likes things. Concrete. Without nuance or fudge room.
So as I've been pressing him to cook his own meals, I've had to stiffen my own recipes.
When Elmer asked, "Milk or water?" while preparing scrambled eggs this morning, "Either" was the wrong answer. Ditto "If you like" to his question about adding butter to the pan.

So "How high should the flame be?" needs a marker written in stone. Ditto for "How much water in the pot?" I can do this. I can give concrete directions. I will be a walking, talking cookbook.

Mind you, following recipes never helped me. I still can't cook, despite James Beard-worthy directions. I can dish it out. I just can't take it.

Untitled, unschooled, unhappy

2010-11-05T14:40:00.000-07:00

Image by kla4067 via FlickrThis blog is as much about me as it is about Elmer. And I am in a bad way. Glum as Gary. Downcast as the weather. As sad sack as can be.
I want my own Mom to take care of me.

When last I wrote (August 17), Elmer was in fine shape, looking forward to school. Which, it was soon apparent, was not working. A moment here, an hour there, a morning missed, then a day. Then two. I raised a red flag; said, "Yoo hoo! Things aren't working."
"Hello, team! Best we take action sooner, rather than later."
"Elmer is at home again. Help."
True to form, the school moved slowly....too slowly; the upshot being Elmer at home, unschooled, for a month now.
At first, I coped well; "Elmer, we'll figure it out. We've been through this before. We'll get through it again."
By the time his school team had a plan in place, Elmer was so deeply mired in gloom, that he could not bounce back. Unsticking him will be slow and painful.
And when Elmer is mired, so am I. Chained in glue. Stuck in cement.
I berate myself: "What could I have done differently? I called IEP meetings. I asked for support, interim plans. Should I have yelled louder, made scenes, called the Special Ed Director sooner?"
We're back in autism land and I don't like it.

The prodigal son

2010-08-23T09:00:00.000-07:00

Image by Getty Images via @daylifeHe's tall, he's tan, he's home.
And so together, his stammer has disappeared.
All my anxiety about the quality of camp slipping or Elmer dissatisfied with his experience?
Not according to Elmer.
He's as cool as cucumber.
And he learned to water-ski.
His 2-year-old bar of soap came home, too, barely touched, 'though he swears he showered regularly.
So I'm counting my blessings, which are many.

T-minus 7

2010-08-15T16:07:00.000-07:00

Seven days till Elmer comes home from camp.

I've become accustomed to being alone, but I don't like being lonely.

Not that a teenage boy is ideal company.

'Though if the past is any guide, he'll come home cool-as-a-neurotypical-teenager.

Which is quite a package.

What will be, will be.

Message in a bottl-e-mail

2010-08-01T06:37:00.000-07:00

Two weeks have passed since I've had word from Elmer at camp. For most folks, no news is good news, but Anonymom is a Professional Worrier.

So I commissioned another Mom to spy on him at Visitor's Day, from which the boy himself had banned me.

Here is her message:

Package delivered, happy boy... All is well!

Took pic and will email you when I'm back home

Have a great weekend.

Sent from my iPhone

Hooray. Toss me a bone and I am happy.

Found

2010-07-27T14:19:00.000-07:00

Image by cszar via Flickr

Less than a week after Elmer left for camp, I found out how I'd spend my summer.

Recuperating.

No carefree summer idyll for me. I stumbled, fell, and broke, including my right wrist which is now rich in titanium.

Man proposes, God disposes, Anonymom falls down.

So Elmer is having the idyll and Anonymom the ill-dll.

Lost and Found

2010-07-02T13:02:00.000-07:00

Image via Wikipedia

@FindingBorneo tweeted: "There is no better compliment than having a child fall asleep in your arms."

Elmer is still my child, but even if he fit, he wouldn't do it now. That 6 foot-200 lb'er with the crewcut and the acne who just walked by? Nope.
Homeboy is leaving in 12 hours for 7 weeks at his beloved CampKodiak
I thought I'd spend the day with him. And I did; Elmer downstairs watching Lost, me upstairs hanging out.
Who's lost? Elmer's packed his bags, said, "Good night. I'll miss you," and shut the door.
This is what we dream of and work for-: the independence of our children.
He still needs me for some things. Not like he did 6 years ago when he was first diagnosed, or in the pre-diagnosis years of wondering what was going on. Not even like two years ago when we finally took on the school system.
It was worth it. Clearly. Because he packed his bags and shut the door.

Da boy in da basement

2010-06-18T15:31:00.000-07:00

Image by AltoExyl via Flickr

Playing da video game.
I don't like it.
I'd rather he be gainfully employed.
Fishing. Biking. Camping.
Volunteering.
But he's in the basement playing Xbox.
Sleeping til noon and playing Xbox.
Like any teenage boy on break.
But this teenage boy has autism. On school breaks he used to fall apart. Completely.
Now he acts like any teenage boy on break.
On July 4th, he's off to his beloved Camp Kodiak for seven weeks; seven learning-rich, social skills-building, tightly-structured weeks.
That will be followed by a camping (there it is: the camping!) trip with the Treehouse gang.
And immediately back to school.
So I'm gonna try to lay off and enjoy the "teenage boy on break" experience.

reBlog from Susan Berkson: Teen Clean Your Room

2010-06-08T10:12:00.001-07:00

I found this fascinating quote today:

In a house with a teenager. In other words, at wit's ends. The stepping-on-legos years were tolerable But this is ridiculous. You're not going in there anymore so the kid is going to have to take care of it. June 11. That's the day we rise up and force those kids to clean their rooms.Susan Berkson, Teen Clean Your Room, Jun 2010

You should read the whole article.

Last day of 8th grade

2010-06-03T12:21:00.000-07:00

Image via Wikipedia

"It's been a fun year," says Elmer.

So what's wrong with me? My 14-y-o teen with autism just had a great year in his mainstream middle school, after a year in a Level III ASD classroom, after dropping out of 6th grade and going through due process.

So it's a miracle that he has had this year. Yet I sit here and think, "His acne is awful. He is so overweight."

It's not enough that he is successful in school? That he fits in? That he has a friend?

What is my problem? Is it never enough?

Not for sissies

2010-05-18T14:15:00.000-07:00

Image via Wikipedia

Parenting a teen with autism.

Just parenting a teen is hard enough. Throw autism into the mix and it becomes a decathlon.
Kid is up and down, wired then mopey, on the honor roll and unable to get out of bed.
Now I understand why so many kids are sent away to school.
Mom, of course, does nothing right. In theory, I am resigned to being stupid and embarrassing for the next 5 years. But since I am parenting solo, I sometimes get worn down and weepy from the constant criticism.
I have toughened up a tad bit, as they say in Minnesota. I told Elmer he is welcome to exchange me for another parent. To walk if he doesn't like my driving. To learn some recipes if he doesn't like mine.
Touche', as he says.

Quick Cue the Downloading!

2010-04-27T09:00:00.001-07:00

Image by /Joe via Flickr

Back in June 2009, I blogged my wish for a social skills app:

My 13-year-old fact-quoting Asperger's egghead has found an app called Cool Facts.Which is just that: an unending collecting of cool facts.Its the last things he needs. He is already a storehouse of arcane trivia, a Jeopardy champ in the making.With the iPod Touch in his hand, he never shuts up.What he needs - what all kids with Asperger's need - is as an app to guide them through reciprocal conversation.Is there an app for that?There's certainly a market.Anonymom, AnonymomBlog, Jun 2009

It's here.

Quick Cues is available in the Apple Store. Let the downloading begin.

We are being tested

2010-04-23T07:50:00.001-07:00

Kiddos in Minnesota are undergoing MCA's -- Minnesota Comprehensive Assessments.
So are their parents.
This testing is comprehensive.
As you can see from the graph above, it has taken a toll on Elmer's mood.
Mine, too. As he yelled at me this morning, I asked "Does this help you feel better?"
"Yes," he exploded.
I am sucking up and dealing.
How do you cope with school testing?

Message in a bottle

2010-04-14T11:00:00.000-07:00

Elmer's on a bike ride.

He may be functioning beautifully in junior high.

On the trap team and out in the world.

But the kid can't spell.

At all.

My sister-in-law tells me that two of her "neuro-typical" kids can't spell either, so maybe there is something other than autism going on here.

Still, Elmer get credit for trying not once, but twice to write a message

And for getting out there on his bik.

Autism Awareness Month

2010-04-01T10:46:00.000-07:00

Hours of the day an auti-mom is aware of autism: 24
Number of things parents of a child with autism will try: Infinite

Lifetime cost of care for person with autism: $3.2 million

Caring for all people with autism over their lifetime: $35 billion per year

Knowing that autism is caused by a combination of genetic and environmental factors: Painful

Autism Awareness Month: Worthless

Post-script:

To be fair, I want to link to this Voices of Autism piece that appeared in today's New York Time. This has value.

When autistic behavior is misunderstood | Washington Times Communities

2010-03-29T16:08:00.000-07:00

When autistic behavior is misunderstood | Washington Times Communities

How well we know. And understand.

Brace yourselves

2010-03-24T11:49:00.000-07:00

Image via Wikipedia

It's B-day for Elmer. Getting braces on.

The boy was so anxious he couldn't function.

Didn't bathe, go to school, brush teeth, or have normal conversation.

Thirty minutes before the appointment, I convinced him to swallow half a xanax.

(leftover from the not-so-long-ago-high-anxiety years.)

He's a cool customer now, stretched out in the ortho chair.

So next time, I'm taking a xanax, too.

Certified

2010-03-12T17:42:00.000-08:00

Tonight at the gun range, Elmer passed his field test.

Naturally he was first at the range. Itching to go, that's my boy.

He made it through four three-hour night classes, involving lots of sitting.

And he stayed focused, did his homework, was the star pupil. He was consistent, persistent, conscientious, focused, and proud. Hooray for him.

Einstein's Momma

2010-03-03T10:23:00.000-08:00

Image via Wikipedia

So Elmer, as I've recently posted, is doing verrry well.
Troubled-ly well.
Which is not a word. But gets at what I'm feeling.
First, the Jr High Principal introduced herself and told me what a pleasure it was to have Elmer in her school; "I've listened to him in class and he is profound."
If I hadn't been so stunned, I would have wept.
Last night, I drove Elmer to session 1 of his Firearms Safety Class, where he soared over the class like a witty Albert Einstein, displaying an encyclopedic knowledge of firearms, including their history and workings. He made smart, allegorical jokes, to boot.
I'd never seen this.
I've done this; it's who I am and how I operate. But Elmer and I have been in Holland, remember? Not among the eggheads at Harvard or the University of Chicago.
So praise the lord, right?
Here's where the troubled-ness comes in: he's not at Harvard or the University of Chicago. He's among kids who are struggling to remember the "Al McTarget" acronym of gun safety rules. So I'm afraid he's gonna be shot down like Icarus (who flew too close to the sun.)
I don't want to spoil his fun and he has a right to enjoy knowledge.
But I, who grew up without peers, out-of-place in a bad public school, know about the hits you can take when you fly too high.
Well, he's a big boy. I think he can take it. The question is, can I?

Holland, Italy, and Home

2010-02-25T13:33:00.000-08:00

Image via Wikipedia

You know that Holland country you ended up visiting when you through you were headed to Italy? It's the allegorical journey parents of special needs kids take. I've been in Holland a long time and gotten used to it. The milestones in Holland are different. And any that approach neurotypical, I see as blessings.

Today was Elmer's 8th grade parent-teacher conference; the first time I met any teacher other than the autism specialist. And what a teacher; "Ms. McN's almost as quirky as you," Elmer announced.

We walked into the school like any other 8th grade family; Elmer affecting teenage cool, me a necessary embarrassment. Ms. McN was glad to meet us; "Very curious to meet Elmer's parents, " she announced, "Your son is brilliant. But I don't have to tell you that. He adds so much to the class. But you know that. His comments are brilliant. And his one-liners.....it's just a pleasure to have him in class. What a great addition to the classroom."

Oh, Ms. McN, you *do* have to tell us. We may know it in our hearts; but we've been struggling upstream (in Holland) for so long, we set all that aside. In Holland, we've been working hard on keeping our heads above water, so swimming was out of the question, let alone swan dives or any kind of soaring.

In my childhood home, brilliance was the norm. But the last nine years of Elmer's childhood were in Holland. So everything you said today was a gift. And I got a taste of the lights of home.

The blessings of normal

2010-02-19T05:16:00.000-08:00

Your ASD teen smells, gets surly, thinks you're stupid, discovers Facebook, watches MTV, drinks milk from the carton, listens to Weezer, and, you think, "Thank you, God."

Ouch is right

2010-02-15T06:38:00.000-08:00

Image via Wikipedia

On her Teen Autism blog, Tania writes: "And no matter how much you love your son and the wonderful person that he is, no matter how far he’s come and how much he’s achieved and how high your hopes, it still hurts. For both of you."

This week, Elmer's team leader cc'd me a post she'd sent to Elmer's teachers:

Hi All,

I noticed that Elmer doesn’t really have a clue about when to interject his ideas or perseverations of the moment during your class time. He becomes easily embarrassed if he is redirected in front of the class. So, how to shape and redirect his behavior effectively as gently as possible?

It will be helpful for us all to tell him when he can share information- exactly as you wish him to share.(both verbally and in written form) Gentle reminders in written form would also be helpful to him when he forgets or needs reminders in novel situations.

He has been in a 1 teacher : 5-8 student classroom for the last few years where this behavior was not a an issue. He needs to learn when to share relevant info and when to share goofy fun stuff so it doesn’t interfere with your teaching. Elmer and I will talk it over in goals lab, too.

Thanks, he is thriving in your classes, Team Leader.

Immediately I pictured his classmates rolling their eyes, tittering, "Weird Elmer"ing. Ouch. At least in our case, Elmer has Team Leader who is on top of this. Still, as Tania wrote, after all these years and as far as he has come.....Ouch.

IEP? There's an app for that

2010-02-06T05:48:00.000-08:00

PEATC - Parent Educational Advocacy Training Center - IPhonePressReleaseKit

Hallelujah, Moms and Dads. We've got an app for our kiddos' IEP's.
Any parent who has ever tried to write an IEP knows how confusing it is.
So this *free* application is manna from heaven.
Download it from iTunes now.

Smooth sailing

2010-02-03T12:56:00.000-08:00

Here is Elmer's latest graph on his mood and stuff at school.

Smiley face

2010-01-27T13:53:00.000-08:00

Swing, swing, swing.

"Mom, I've got spilkes," Elmer tells me from his cocoon-like swing, where he does all his talking.

Swing, swing, swing.

"I don't know why," he adds.

Swing, swing, swing.

"I'm kind of happy," he mutters.

"You got a problem with that?" he asks.

No.
Swing, swing, swing, swing.

Manna from heaven

2010-01-20T12:06:00.000-08:00

Image via Wikipedia

Auti-mamas, we have been gifted.

Like many kids with autism spectrum disorders, Elmer's medical expenses have way outstripped his insurance coverage; so we're glad to have TEFRA, Minnesota's version of the Katie Beckett waiver. This makes Elmer eligible for Medical Assistance (MA). It's not free; we pay a monthly premium, but it has been critical to paying for his needs. It is considered his secondary insurance, and covers expenses not covered by his primary insurance. As long as it comes from an MA provider.
That's the rub. Because it is a Medicaid program, reimbursements are low and not every provider accepts it. We choose providers carefully, always making sure they accept both our primary and MA coverage.
This short story is getting long.
Anyway, we were delighted that our neighborhood orthodontics office accepted both policies, and Elmer has been going twice yearly for three years while waiting for the last grown up tooth to emerge. Last month it emerged! We scheduled the next appointment, resubmitted insurance cards, and were informed the practice no longer accepted MA. "They never pay," we were told. Folks, Elmer is doing well, thanks to all the supports he has received thanks to programs like MA; but he still has an ASD and is used to this practice and any change is hard and he doesn't want unfamiliar people in unfamiliar places sticking their hands in his mouth.
I spoke to the financial director. I wrote a letter to the orthodontists. And I just got a phone call from the practice letting me know that they were going to treat Elmer f r e e !
They'll collect the $1000 coverage his primary policy provides, but the rest of his orthdontics -- roughly $5000 -- will be gratis.
Gratis! Just like manna from heaven. So I guess that's who I should thank.
(Plus the orthodontists.)

Post script: Because I have been so blessed, I am making a contribution to Doctors Without Borders in honor of these orthodontists.

Bar None

2010-01-11T16:02:00.000-08:00

Image via Wikipedia

Having real problems getting the Bar Mitzvah train rolling.

The standard one-size-fits-all Bar Mitzvah plan won't work.

And the one-size-fits-all-ASD-kiddos won't fit either.

After plotting a course that would work (two-dudes-talking-Torah plus interactive white board), the Rabbi informed us that he didn't have time for this approach. Furthermore, he wondered whether Elmer really wanted a Bar Mitzvah and whether I could discipline him to study.
Them are fighting words to this Auti-mom.
Elmer reminds me that he has had zero good experiences with religious education at the synagogue; pre-diagnosis, he just didn't fit and dropped out. Post-diagnosis, he was placed in a one-site-fits-all-ASD class that didn't fit him, and dropped out. His only religious education has been at home.
And this is a boy who should be grappling with Torah. His is a first-rate mind that can hold its own with the sages.
And the Rabbi doesn't have time for him?
I guess we need a different dude (or dudette) to talk Torah. Onward and upward.

time for twitter

2010-01-08T08:10:00.000-08:00

Image via Wikipedia

Autism is 24/7. And all of us auti-mamas know that things come up all day long.

Not all them worth a blog post.

But a tweet? 140 (or less) characters? To vent, to howl, to laugh, to share?

That we can do. So sign up for a twitter account (if you haven't already) and let's get the twarty started,

Back off, Mom

2010-01-04T14:13:00.000-08:00

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These are my marching orders.

It is time for me to back off. I no longer have to paddle 24/7 to keep my son with Asperger's Syndrome above water.

He can swim now.

This is not to say that there won't be some swift current, a shark, or undertow that could pull him off course. There will be. But now he has the skills and maturity to navigate.

I'll still be his mother and I'll still parent him -- but I have to do it differently. And that means backing off.

So off I back. I don't know what's back there. I don't know what's ahead.

We're sailing off to a new world.

Season of Miracles

2009-12-23T12:23:00.000-08:00

Image via Wikipedia

*Friend* in the house, playing Xbox with Elmer.
Just a couple of guys doing stuff.
That's a miracle for Elmer, whose elementary school years were miserable and lonely. Whose wonderful 7th grade year met all his needs but one: friends. A friend was the missing piece; his heart's desire.
Earlier the two boys, who look like Mutt and Jeff, played Killer Bunnies and got something to eat before moving downstairs to the Xbox. No need for management or parental intervention.
I am going to have to renegotiate my contract -Elmer does not need the same level of services. These days we are enjoying the blessings of normal.
And for us, normal is a miracle.

Mystery solved

2009-12-21T05:37:00.001-08:00

Not genetics. Not the environment. Nope, Autism is increasing because of study.

Get me copy!

Festival of LIghts

2009-12-14T05:58:00.001-08:00

Image by Ben Golub via Flickr

If you have a kid on the autism spectrum, you know that there are a thousand points where things can go wrong, every day. So we carefully manage our kids, picking and choosing where they go and what they do; prepping them; having Plan B's in place; all the while, schooling them in life skills, social skills, self-awareness, and flexibility.

Last night was loaded with opportunities for things to go wrong: company. We were having company for dinner; company Elmer didn't know; a family with a 6-year-old I'd invited to share Hanukkah dinner.

After spending the morning volunteering at the YMCA Xmas tree sale, Elmer was in good spirits. I asked if he knew of anything a 6-year-old could do in our house: "Nope". "Oh, well," I said, "I trust you will be a good host."

Mamas, he was a delightful human being, as my father would say; charming, witty, appropriate, de-light-ful. (on the festival of lights!)

He ushered in our guests, offered them beverages, sat on the couch and chatted with them, found books for the 6-year-old, stayed at the table for the whole meal, exhibited decent table manners. He even demonstrated advanced etiquette; asking, before polishing off the salad, "Would anyone like more salad?" He got the dreidel* game going, parcelling out gelt and pennies; and kept everyone happy and entertained for scores of spins.

*The dreidel is a four-sided spinning top that children play with on Hanukkah. Each side is imprinted with a Hebrew letter. These letters are an acronym for the Hebrew words נס גדול היה שם (Nes Gadol Haya Sham, "A great miracle happened there").

Here, too, Mamas. Here, too.

2009-12-09T12:34:00.000-08:00

Image via Wikipedia

Elmer's 6' tall. He runs the snowblower. And he got a phone call.

He's on the call right now with "Nickolai from Camp Kodiak", apparently a pal from last summer. I'm eavesdropping from the top of the stairs as they talk about paintball, snow, rain, school, normal stuff. It's one of those milestones Tania at TeenAutism writes about. Not a big deal for most kids, but meaningful for him.

And me. My cheeks ache from grinning.

He's hung up now and returned to Xbox live, normal teenage stuff.

I imagine Nickolai talking to his Mom about the call; her pride in his milestone.

Thank you, Alexander Graham Bell*, Camp Kodiak, Nickolai, and his mama.

*his mama, too.

A long way in every way.

2009-11-28T09:31:00.000-08:00

"This was the best day ever and I'm not kidding. The best day of my life so far.

I got to shoot a gun. It was awesome."

Ever since Elmer learned that Texas law allows 13-year-olds to shoot guns, he's been dreaming about this day. So when Aunt and Uncle A invited us to Thanksgiving in Texas, his heart rate soared.

Our last visit here was no picnic; we were exiled to a motel. But Elmer has come a long way -- as have Aunt and Uncle A -- and we journeyed here with hope in our hearts.

When Uncle A got the green light from a nearby ranch -- belonging to a champion skeet shooter -- off went the boys, not to return for hours. They shot and shot and shot; all kinds of guns at all kinds of targets, including skeet. He had instructions in gun safety, a tour of the walk-in gun locker.

He came home, exhausted, exhilarated, with so much to process, he was unable to turn on a dime and go out to dinner. Which Aunt and Uncle A thought was lazy on his part and bad parenting on mine.

I began to worry we'd be exiled to a motel again. Which I suppose could still happen.

But, ladies and gentlemen, he had the best day of his life so far, and I'm not kidding.

Thanksgiving

2009-11-26T04:25:00.001-08:00

I give thanks for my sister auti-mom bloggers. You cheer me, sustain me, and inspire me.

Runaway with Aspergers-11 days alone on Subway

2009-11-24T04:33:00.000-08:00

http://www.nytimes.com/2009/11/24/nyregion/2

"No one spoke to him. Asked if he saw any larger meaning in that, he said, 'Nobody really cares about the world and about people.'"

Mapping the transition

2009-11-20T12:59:00.001-08:00

It looks like a mountain range or a roller coaster.

This is Elmer's diagram of his transition.

Clearly, it hasn't been smooth sailing.

The team tells us to expect more of the same, so I'd better batten down the hatches.

This is news? Bullies prey on autistic kids

2009-11-15T05:34:00.000-08:00

Survey: Bullies prey on autistic kids

Bad mama

2009-11-11T08:44:00.000-08:00

Image by IndyDina with Mr. Wonderful via Flickr

I'm a bad mama. Bad, bad, bad.

And I don't mean bad in any cool, ironic sense.

I made a mistake this morning, which in and of itself, is ok.

But I did not have it in me to make it right. No patience. No grace. Not enough love.

Elmer (I don't even like the name) was having a rough morning. Dad hadn't shown up to cover the morning routine for Mom, who had a 7:30 meeting. Guess what? That threw Mom, too, but Mom was sucking up and dealing, nudging Elmer through his morning routine, when Elmer asked if he'd really be walking to-and-from school, even in winter.
Warning! Red alert! Think before answering, Mom! (Oh hindsight)
"Of course you'll walk, Elmer,unless it's -15 and blizzarding."
..............................................................................
"Mom! That's child abuse! How? How could you?!?! Do you know what I'm dealing with now? Do you? If you did, you wouldn't have said that."
...............................................................................
I get that, now. And I have since apologized.
What I could *not* do was stick around to process and fix it. Could not do it. Told him my day had gotten screwed up, too. That I would drive him today, that we would laugh about this tomorrow. But he was stuck. Asked to go see his therapist, who had no openings today.
I just did not have the patience to be a good auti-mom today. I had things to do, errands to run, and I asked him to come, but he refused. Instead of sticking around, I left. I did my errands. I am now at the library. He will have to work this out on his own.
Because I am a bad mama.

And now for something completely different

2009-11-08T12:49:00.001-08:00

One of the gifts of writing this blog is getting to know other auti-mama bloggers. They strengthen and sustain me. Today please read Tanya of Teen Autism.

You know your kid's an aspie, part 3

2009-10-29T13:48:00.000-07:00

Image via Wikipedia

"Mom, if we cut out Nutrisoda, switch our Direct TV from Choice to Family Package, take one week's allowance and one month's incentive, we can get Xbox 360 live."

Mom, trust me.

2009-10-28T05:29:00.000-07:00

Image via Wikipedia

He's off.

To the new school,
in the dark,
ahead of schedule.

He catapulted.

Just took off on his bike in the dark.

"Mom, for once, trust me."

I do.

Update: Email from New School ASD person to me:

✆

He’s here, walking with a swagger and acting like he’s done this every day of his life!

Lost in transition

2009-10-22T11:30:00.001-07:00

We are transitioning. Formally. Because its not as if we've been static since the first day of school. But we've decided on a school placement, a timeline, and Elmer's first visit to the new site is right now. He is there for the afternoon with his beloved teacher.

We (well, I) visited school after school; private, public, charters. The only place that looked a perfect fit was full and Elmer had to move yesterday. So all the grand poo-bahs (a team of 13, including the District Sped Director) gathered round a table, discussed the options, and decided. He is moving to a custom-tailored program at our neighborhood Jr.High. And it will be customized unlike anything they've done before.

As the principal of his Magnet School told the poo-bahs, "There is no ready-made setting that works for Elmer. Even special ed settings must be tailored. Elmer will challenge you. He challenged me. And he made me a better principal."

"Anonymom," said the Sped Director, turning to face me, "What can we do to win back your trust?"

"The proof is in the pudding," I told her, "He needs to succeed."

Elmer, meanwhile, is entirely appropriate. Last night, when I asked if were nervous about the move, he shrugged and said, "I'm happy."

Before he got on the bus this morning he asked me to tell him jokes, which I did. Then he muttered, "I don't want to go to neighborhood jr. high this afternoon."

Then the bus pulled up and off he went.

But I, ladies and gentlemen, am even better than a girl scout. I am an auti-mom, so I am preparing a Plan B.

You know your kid's an aspie

2009-10-15T13:03:00.000-07:00

When he glances at the TV shot of the runaway balloon, he says, "I know how to grab that balloon,' then proceeds to bring up this on YouTube.

You know your kid's an aspie....

2009-10-13T17:24:00.001-07:00

Image by Totoro! via Flickr

Two inches of snow on the ground this crazy morning meant letting the dog out instead of walking him. When we finally got home from the loco day of meetings, school visits, consultations, appointments, we found the poor dog had had an accident on the floor. Elmer nodded toward his backpack, and muttered, "Bio hazard bags, second pocket."

Response from Elmer's teacher

2009-10-12T14:50:00.000-07:00

If I would have known what I know now the first week of school, I would have suggested pulling him then.
On the second week of school, I did suggest to leadership that we move Elmer into the high school classroom, but was told it was full and was reminded that there is a student in the class who does have a history of aggression. Again, in retrospect, I should have pushed harder. I am sorry!

I know Elmer will receive TLC in the older classroom. Elmer knows most of the students in the older
classroom, and knowing the boys, they will talk among themselves
about the struggles and that in itself will be healing for Elmer.
I will check in with Elmer on a regular basis and I know others will continue to be there for him.
If you have ideas of other ways in which I can help Elmer, please let me know. I do believe that it is important for us to affirm with Elmer that he demonstrated great strength and skill in not only using his coping stratagies at school; that we help him see how strong he is, and that we (as a team) acknowledge we asked more of him than we should have - that his stress is a reflection of the team's mistake (not a reflection of Elmer).
Anonymom, we remain a team and we remain there for Elmer as a team with added knowledge and wisdom.
Please try to care for yourself too as finding a program with a good fit may be a process.
Take care.

Moving forward

2009-10-12T12:27:00.000-07:00

Email to Elmer's IEP Team:
Elmer is going to need considerable help to recover from this month. While his team observed him coping with the chaos at school, at home he has been stimming, depressed, overeating, irritable and moody. While these have not been in large quantities, they are behaviors I haven't seen for years. This is painful, scary, and frankly, heartbreaking and infuriating.
I think we erred by maintaining the status quo for even this month. I wish I had pulled him sooner.
I know we can't go back in time but we must devote whatever resources are needed to reverse this.
Elmer must be nourished so that he is once again the boy who showed up ready to soar on the first day of school: confident, even-tempered, easy-going, charming, curious, optimistic, and a happy leader. That's the boy I sent to school and that's the boy I want back.

Good evening

2009-10-05T07:44:00.000-07:00

Our lives have been as gloomy as the weather, as our outgrown school situation stretches on. Both Elmer (The Aspie formerly known as Diver) and I are stress-eating, cranky and depressed.

And yet.

Last night offered a glimmer -- more than a glimmer -- of hope that we will weather this; that Elmer has maintained his mighty growth; that he will be a competent adult among adults.

He had wondered outside with his poi balls and begun practicing, throwing a teen-aged "Mom, what are you looking at? I'm just hanging out" my way.

So I crossed the street and joined neighbors accompanying their toddlers on a bike ride. I returned to warm up at their fire pit, when Elmer joined us with kettle corn, six pack of soda and chair. That's a good guest; someone who BYOB, food and chair.

He gracefully entered the conversation and spent the evening socializing around the fire, discussing kayaking, WWII, Hitler, Stalin, Minnesota resorts; always polite, always appropriate, navigating run-on adult talking, adding interesting information even I didn't know.

I did not have to manage, monitor or worry. Miracle. Miracle!

I could tell that neighbors,who once feared him, not only enjoyed him, but respected him.

So maybe his team is right; learning to deal with the chaos at school will prepare him for anything that comes his way.

Another Day in Paradise

2009-09-17T14:37:00.000-07:00

Image by Getty Images via Daylife

"That's what Kevin and I kept repeating today," reports Diver.

But Kevin is a paraprofessional and is paid to be there.

Yes, another day coping with violent-chaos-meltdowns in the classroom. And with a safe space to retreat to, Diver now feels safe in the building, 'tho not in class.

Today's festivities included one student attacking another. Teacher hit by flying book. Two students in physical alteration.

Diver is coping and the team has met and discussed transition to a new school, but to his list of physical stress symptoms (stammering, tic, stress eating) is a newbie, nausea.

Yet, God bless him, he mustered his strength and moxie to go to his funjoyment social skills group tonight.

"You are the strongest boy I know." I said to Diver.

"I know," he replied.

Diver's been asking me to change his name to Elmer Fudd. Today's the day. He earned it.
Elmer, it is.

Growing Pains

2009-09-11T16:48:00.000-07:00

It's not all good news.
Diver has grown so much that he has outgrown his school. Thrilling, right?
Yes and no.
Going back to school with such high hopes only to find it no longer works.
We thought this day might come, but not so soon.
He is coping valiantly with classmates in constant meltdown, whose social skills he describes as "bad as Hitler's."
But the stress is taking a toll. He trudges in, dispirited and silent. He becomes a dead weight in front of the big screen, unable to move. He struggles off in the morning for another day of chaos.
We've caucused with his teacher, who concurs that its time to move on, and we have a team meeting next Wednesday.
Mainstream is not the answer. Don't know the answer or how the home district will respond. In the meantime, misery.

Morning Checklist

2009-09-08T10:34:00.000-07:00

Got on bus.
Went to school.

Jump the Snark: Tomorrow

2009-09-07T08:38:00.000-07:00

Jump the Snark: Tomorrow

That's my boy

2009-08-31T13:41:00.000-07:00

Last night at bedtime, Diver lamented, "I'm jealous of Andy. He gets to start school tomorrow."

Ironic, isn't it? Kids are trudging unhappily back to school. Most would be jealous of someone with another week off.

But Diver like school and loves routine, so the week ahead was yawning like a chasm. All of my brainstorms had been rejected when Diver came up with one of his own. Might he help at the drop-in child care franchise he occasionally attended when he was younger?

Brilliant boy.

This morning, I called the manager, who was amazed that an older kid would even set foot in her door. But she remembered Diver and said, "Bring him over."

That boy had a good day at work. On a scale of 1-10, 10 being amazingly awesome, Diver called his day a "7".

Which is pretty impressive for a day at work.

He was not paid. In fact, I paid the standard $8/hour. But it was money well-spent.

"You're an impressive boy, Diver," I told him.

"I know," he replied.

"You know what I want?"

2009-08-27T11:28:00.000-07:00

"To go to school."

From the mouths of babes, and smart aspies.

Diver knows exactly what he needs: routine. Routine of camp is over. Routine of camping trip is over. Routine of school doesn't start for almost two weeks. Oh, pain and misery.

Doesn't want to go to Fair. Doesn't want to see movie, play splatball, or go to Air Guard Museum. Just wants to go to school.

Sigh.

The icing on the cake

2009-08-18T14:00:00.000-07:00

Diver lost 22 lbs during his 7 weeks at camp.

T-6 hours

2009-08-16T07:19:00.000-07:00

His swing has been moved. The angle of the big screen adjusted. I've been sitting in his chair. There are new slipcovers on the couch. There's a different powercord for his laptop. A new toothbrush in his cup.

Diver will notice all of this and more. Minute alterations to the house that I'd never note in a million years. It's a blessing and a curse and I haven't thought about it for 7 weeks. I'm already anticipating his reaction and ways to prepare him; preparation, as we auti-parents know, being key to success. On the way home from the airport, I'll mention how we'll both need to adjust; to change in the house and each other.

The prodigal son

2009-08-15T16:48:00.000-07:00

Diver returns tomorrow.
I'm nervous.
I've been solo for 7 weeks. And while it's been lonely, I've become accustomed to it.
Diver has been at camp for 7 weeks, in the heart of the place he loves best, with structure, routine and community that meet *all* his needs. He's become accustomed to that.
I can't provide it, which I regret. Like all kids on the spectrum, Diver likes routine and structure. Despite my best efforts, I have never been able to match what he gets at camp.
School doesn't start for three weeks. We will survive, but it will be precarious.

An app for that

2009-07-27T12:21:00.001-07:00

Image via Wikipedia

Remember my fond wish for an iPod app that would guide Diver in social situations?:

My 13-year-old fact-quoting Asperger's egghead has found an app called Cool Facts.Which is just that: an unending collecting of cool facts.Its the last things he needs. He is already a storehouse of arcane trivia, a Jeopardy champ in the making.With the iPod Touch in his hand, he never shuts up.What he needs - what all kids with Asperger's need - is as an app to guide them through reciprocal conversation.Is there an app for that?There's certainly a market.Anonymom, AnonymomBlog, Jun 2009

And now there is an app.

It's as if the fairy godmother had heard my plea. Right here in my hometown, smart minds at Fraser have developed an ap for Aspies.

Now I'll have to click my heels together three times and get my hands on it. Fairy godmother, are you listening?

mama on the edge of autism: Life on the treadmill

2009-07-23T07:20:00.000-07:00

mama on the edge of autism: Life on the treadmill

Diver loves Mama on the edge. We read it aloud and laugh. Though Diver is at camp, we can still read it aloud. And laugh.

Fill in the blank

2009-07-20T17:22:00.000-07:00

Have you heard from Diver?

Yes and no.

As I blogged previously, I've been mailing Diver pre-written letters. All he has to do is select one of my witty multiple-choice answers.

And he has been mailing them back to me.

Folding them, putting them in envelopes, sealing the envelopes, and sending them off.

Unanswered.

Everybody's happy

2009-07-06T14:25:00.000-07:00

Like many kids with ASD's, writing is difficult for Diver.

So I expect little in the way written communication from camp.

To make his life easier, I send pre-written letters with multiple choice statements.

Yet, miracle of miracles, today I got a postcard from Diver himself. His message is clear as day.

Very Single Auti-Mom

2009-07-02T11:44:00.000-07:00

For all the demands parenting Diver places on me, it does give my life meaning. And structure.

In his absence, my singleness feels profound.

Yes, Diver is intense and complicated and loud. But he fills time and space.
Now that he's at camp, it's empty.
So I took advantage of a four-day free-trial of a dating service, quickly posting my info, and just as quickly receiving some queries.

Until I added: I'm a plus one. With me, you get my 13-year-old with an Autism Spectrum Disorder. He is funny, smart, complex and requires patience and understanding way beyond the ordinary. Caring for him has left me way-out-of-practice in socializing with adults. He's worth it. So am I.

It got very quiet.

On his way

2009-06-28T09:03:00.000-07:00

FLIGHT: 2401 STATUS: In Flight

Departs: Minneapolis/St. Paul-Int'l, MN (MSP) Arrives: Toronto-Pearson Int'l, ON, Canada ( YYZ )
Departure Date: June 28 Arrival Date: June 28
Scheduled: 10:15AM Scheduled: 1:21PM
Actual: 10:14AM Estimated: 1:10PM
Gate: C27 Gate: B14
Aircraft: CPJ Weather: YYZ

There you have it, Ladies and Gentlemen. Diver is on his way for his third summer at Camp Kodiak.

What a difference from Year 1, when he was at DefCon 1 all the way to the airport, at the airport, boarding the plane; and this with me by his side all the way to Toronto.

I learned my lesson last year and kept myself together better, as did Diver, who maintained his composure through gritted teeth and serial Bubblicious chewing.

And this year; laughing, joking, "This is kind of boring" stating.

How far he's come.

Is there an app for that?

2009-06-24T18:14:00.000-07:00

Image by Getty Images via Daylife

My 13-year-old fact-quoting Asperger's egghead has found an app called Cool Facts.
Which is just that: an unending collecting of cool facts.
Its the last things he needs. He is already a storehouse of arcane trivia, a Jeopardy champ in the making.
With the iPod Touch in his hand, he never shuts up.
What he needs - what all kids with Asperger's need - is as an app to guide them through reciprocal conversation.
Is there an app for that?
There's certainly a market.

Faith and the Auti-Mom

2009-06-22T07:37:00.000-07:00

Image by Phoney Nickle via Flickr

As he boarded the bus for week 2 of his YMCA L.I.T. (Leader in training) program, Diver noticed that someone was sitting in *his* seat.

I paused. Then high-tailed it out of there.

It is the first of many challenges he'll face today.
My challenge is a) to prepare him; and b) to trust. I will not always be there to advocate for him; to say, "Diver has an Autism Spectrum Disorder and needs; a) routine b) order c) space d) quiet e) chill time f) whatever. "

I must trust that he can advocate for himself. That he has the skills to meet his challenges. That even when he stumbles, he will be all right. He will learn.

That's what will make him a successful, independent human being. Not me.

All of this requires faith on my part and I am trying to exercise it. Having tried the way of faith and the way of no faith, I know that the way of faith works better. I do not have the faith of my sister auti-mom who blogs at Autism in a Word .

But I admire it. And my faith can only help Diver. So I am going to keep exercising it.

It takes a village

2009-06-16T08:42:00.000-07:00

Image via Wikipedia

Sometimes an army.

He's not at Def Con 1, but Diver's anxiety is high. Watching him grapple with the beast is inspiring, tiring, and funny.

Last night it was the Blizzard from Dairy Queen; followed by a long Xbox sortie; processing; yes and no questions; and, a flat out rejection of all suggested anxiety-busters. This morning, when asked what would help with the anxiety, Diver muttered, "A blizzard. An actual blizzard so there'd be no camp."

And yet with the help of two parents, a different water bottle-that-did-not-sweat, an early departure for the bus stop, a parental backtrack for juice and muffin, a ban on jokes, and a code of silence, he got on the bus (first, of course), sat down in his seat (front, of course), and went to Day 2 of his Leader-in-Training program.

All hail the king of coping!

Post-script

He has more to cope with than I thought. Here's the email I just sent to the camp director:

Diver and I have been sitting here processing the first couple of days and doing some problem solving about things that are rough for him.

He reported that on Monday he got hit in the face and while he was upset, he thought it was accidental.

Today he told me the he was kicked by the same camper, someone named George. Diver believes it was intentional. He says that that third boy in the L.I.T program has been harassing him about his stuttering. That has to stop. He reports that the hardest part of the day is at the end when everyone awaits the buses in the amphitheater. He says that the combination of the noise and the crowd and the heat at that time of day overload him and make it unbearable. He asked if he might wait in the office instead. I hope so. That seems a reasonable accommodation.

Diver says that is all he can think of. I will keep you posted if anything else arises.

The Y has been a great resource for Diver and we are grateful.

Long live the king

2009-06-15T17:27:00.000-07:00

As I waited for Diver to return from his first day as a Leader-in-Training (L.I.T.) at YMCA Day Camp, I calmly prepared for the worst scenario: Snarling teen gets off bus, stomps to car, muttering, "I'm never going back"

That had been Diver's standard response to new experiences.

I resolved to be different; to prepare, remain calm and unflustered.

The bus pulled up. Diver climbed off, handed me his heavy backpack, and announced, "Dairy Queen or Burger King."

"Hungry?" I asked.

"No. I got hit in the face. "

As the evening went on, details of the day filtered out. Noticeably absent was the "I'm never going back" declaration. Right before bed, Diver announced, "I have emotions."

I sat with him and we talked through his day, processing the experience and identifying the feelings. The "hit on the face" was someone trip during a game of tag. And it was fine. He was fine. And insists I come to Family Night Thursday.

Approach with caution

2009-06-08T13:26:00.000-07:00

Image via Wikipedia

The interregnum approaches. The gap, the break, the uncomfortable period between one activity and the next.

(Originally: the period between two kings.)

"Be nice to me. It's the last day of school," a nervous Diver announced this morning.

The last day of 7th grade. The first year in a new school. The first good year since 3rd grade. He is a changed boy, grown from an unstable, wildebeast to a mature, even-tempered, sometimes delightful teenager.

His beloved Camp Kodiak does not begin for 2 and a half weeks. Like all kids on the autism spectrum, Diver likes routine and this is a break.

So I am nervous. Not terrified. We are punting for the rest of this week, and then Diver spends two weeks as an L.I.T (a leader in training) at YMCA day camp. Fingers crossed.

So be nice to me. Its the last day of school.

mama on the edge of autism: Turning it around, part 1: Autism and mood regulation

2009-06-02T15:02:00.000-07:00

mama on the edge of autism: Turning it around, part 1: Autism and mood regulation

This is what it used to be like here, as well.

SuperBoy

2009-06-02T06:24:00.000-07:00

Image by Thomas Hawk via Flickr

Diver just cleared his throat.

It's a nasty, fleghummmy snort. He used to make it umpteen times a day, grossing out one and all.
"I have to clear my snot!" he'd insist.

Was it a tic? An inability to blow his nose? One thing for sure: it was gross.

When I heard it this morning, I realized it had disappeared. Hadn't heard it for weeks. Wow.

Which put yesterday's events into a clearer light. Diver's pants split at school and he spent the day in a funk. He announced he was not going to Civil Air Patrol Cadets, and proceeded to shoot Xbox bad guys.

At dinner, he asked, "Are you mad at me? Why am I asking this?!?"
He was reading my non-verbal signals.
Wow.

Shortly thereafter, he said, "Where's my B.D.U.*? We're going."

He had gotten himself unstuck.
Wow.

Major accomplishments. Super powers for someone with an ASD.

He's not just growing tall.

*Battle dress uniform

SuperWhat

2009-05-30T09:04:00.000-07:00

Image by chanchan222 via Flickr

SuperSensitive. SuperStupid. SuperDumb.

I chauffeured a quiet Diver to his volunteer gig at the Air Guard Museum. (He is mute with loneliness these days.) Before leaving, I stopped to chat with a volunteer in the gift shop. She told me how much better Diver was doing.

"He used to make Major S. nervous," she grimaced, "the way he followed him around."

I cringed. Diver has worshiped Major S since his first visit to the Museum, three years ago.

And he's been making him nervous.

As I drove away, I started revisiting every conversation I've had with folks at the Museum; every glance, every exchange. Are we a nuisance? Should I care?

We spend so much time greasing the wheels for our ASD kids; forecasting, planning, managing. I even volunteer for the Museum now, trying to counterbalance the challenges of working with Diver.

Good thing I snagged them some major media, 'cause it seems that to some people, Diver has been a major nuisance.

Not the TV show

2009-05-26T14:24:00.000-07:00

Image via Wikipedia

Friends.

My boy wants friends.

Of course he does. Everybody wants friends.

Even kids with autism.

There's a common misconception that people on the autism spectrum are loners. Not Diver. Diver is very social; out going, charming, a party animal.

He may not have the most advanced social skills, but he is still a social creature.

In past years, I got him a cat. I got him a dog.
But it's friends Diver craves.
Me, too.
Every day for the last week, Diver has talked about his desire for friends, and has asked both me and God why he has none.

"Just a friend or two. Is that too much to ask?" he implores.

No.

"Then why don't I have any?"

Post script:

Last night, we drove past Diver's ex-friend, A., bouncing on his trampoline. Diver and A had been close until Diver's undiagnosed autism made him a wild child. His periodic attempts at rekindling the friendship were rebuffed, and Diver sadly let it go. But when we got home last night, Diver hopped on his bike, saying, "I'm gonna go see if A wants to do some guy stuff."

An hour later, he came home, happy. I don't know if this friendship will be rebuilt, but for one night, Diver felt that he had a friend.

Two words

2009-05-21T04:59:00.000-07:00

Pubic hair.

We really are 13.

Now we are 13

2009-05-17T13:43:00.000-07:00

Today is Diver's birthday. He's barefoot in his swing, sucking on pop rocks while rifling though his bag of goodies from Dave & Buster's.

Which turned out to be a good choice for his birthday. It's the grown-up version of Chuck E. Cheese, where he spent many a juvenile birthday. Dave & Buster's provided three hours of major fun; so much excitement that Anonymom and Diver's Dad were sufficient company.

When the server brought the lunch bill to the table, Diver pulled out his wallet saying, "I got this" and paid the tab with his birthday money.

Now that's 13.

So is this: Diver's 13th birthday photo opp with hose.

Suck up and deal

2009-05-13T09:42:00.000-07:00

Image via Wikipedia

As I detailed earlier in Hunka Chunky Burning Love, Diver likes his hair cut short, Quantico-style. And now that he is in the Civil Air Patrol Cadets, Quantico is more than a style. It's "regulation", he explains.

"But Diver, I love your hair. You have great hair!" I protest.

"Mom," he barks, "Suck up and deal."

.......................... ............. ........... (That's the sound of Anonymom, sucking up and dealing.)

Yesterday, when another substitute bus driver showed up in yet another vehicle to take him to school, Diver poked his head in the door and alerted me, "Mom, it's another sub!"

"Suck up and deal," I replied.

........................... ............ ....... (That's the sound of Diver realizing the trap he himself has set. And sucking up and dealing with it.)

Hooray!

Truth, consequences

2009-05-11T09:09:00.000-07:00

Image via Wikipedia

Not to get all metaphysical but what if

We told the truth

Not, as Emily Dickinson wrote, the truth slant

But the truth

Is there such a thing?

Or is it all perspective

And if truth is relative, are consequences real?

So was my Mother's Day

Really crumby

Or did it just feel that way?

After all, the sky didn't fall, the creek didn't flood, fire didn't break out.

So how bad could it have been?

My child (and I do have a child) can walk and talk and laugh and run.

He was not able to worship me, as I had joked.

Nor was he able to put me first, which is what I really wanted. A day that was about me, instead of my child; when my wishes were indulged and my needs were met. News flash: a kid can't meet my needs. Not a kid with autism or any other kid. It's not fair for me to expect him to. So of course I was disappointed.

On the bright side (why must I always find a bright side?), my son has learned the concept of "pity party," which I held briefly yesterday.
Onward, upward. Summer (and camp) is coming.

Diver and Drivers

2009-05-07T08:20:00.000-07:00

Image via Wikipedia

Diver doesn't like change. Nobody with autism does.

Even Jerry, Diver's school bus driver (Bless him) knows this. After telling me he was leaving for his summer job in a week, Jerry let Diver know. We processed this with Diver, as did his teacher. And Monday morning, Diver waited anxiously to meet his new driver.
Only to be met by a new vehicle and 2 new drivers.

*!* Diver's emergency light flashed. *!* He couldn't get on the bus. And felt terrible about it.

I drove him to school. That afternoon, he came home in yet another vehicle driven by two different drivers during a thunderstorm. (Any thunderstorm sends Diver to the crawl space under the stairs, where he spent the evening.)

When he came out, he said he needed to rock and to talk. "Will you be my shrink, Mom?" he asked. Diver told me how much he liked Jerry; how steady and dependable Jerry was; and, that he was surprised at how much he was missing him. "Maybe I could have coped with a new driver," Diver continued, "But two new drivers? A different bus? A change in the route? And then two more drivers in the evening? And one of them, Mom, is so old, I don't trust him."

"I hate myself."

This is where Anonymom got really concerned. Diver continued, "I need to see Cindy" (his real therapist).
Bless her. She had an opening the next day, and found him "stressed and fragile".
Last night again, Diver repeated, "I hate myself" And this morning, when he could not get on the bus again, "I hate myself."
Diver is disappointed in himself, and unforgiving. He's made such huge strides this year, approaching something resembling neurotypical. I wonder if part of his disappointment is that he is behaving like his lower-functioning classmates, who he regularly criticizes.

I'm thinking humility and compassion may be part of his lessons for the week.

Google SketchUp and Autism

2009-05-07T04:10:00.000-07:00

Like many kiddos on the Autism spectrum, Diver has amazing spatial skills,

but like many kids with autism, putting pencil to paper to illustrate this is excruciating.

I'm intrigued to learn of how useful this google application has been for kids on the autism spectrum.

Mama on the Edge: Presenting... The Ieppies!

2009-05-06T16:13:00.000-07:00

Mama on the Edge: Presenting... The Ieppies!

Ye old swiss cheese

2009-05-02T05:08:00.000-07:00

Image via Wikipedia

I've posted before about Diver's "swiss cheese development"; his ability to do theoretical physics side-by-side with his inability to spell.

Last night was Shabbat. I desperately wanted company, so despite Diver's insistence that he was company and no one else was needed, I invited family friends. I was fine with Diver's plan to spend the evening alone with a "Do Not Disturb" sign on his door.

Anonymom gets company. Autistic Diver gets to be alone.

In the middle of dinner (shabbat table cloth, crystal, baked chicken, wine), THUD. Something flies into the room: a piece of paper weighted down with an old squeeze ball. It looks like a ransom note. It reads:

muor chikin

Pules

anD

Bred

Communication that didn't involve social contact. Finally a chicken recipe he liked. And he remembered to say pules*.

*please

News pandemic

2009-04-30T08:20:00.000-07:00

Image via Wikipedia

Swine flu news is pandemic.

I have finally managed to wean myself from the 24/7 news cycle, turning off TV and staying away from news sites. I am following CDC on twitter, which is useful, not overload.

It's a different matter for 12-year-old Diver. Glued to CNN, he reminds me that this is his first pandemic. I tell him about others; polio in the 50's, swine flu in the '70's. He is disappointed to learn that I was born too late for the polio epidemic and that I did not catch and survive swine flu, because that would have given him immunity.

Now Diver's announced that he's not leaving the house until swine flu is over. Except to go to school, CAP Cadets, or outside to get some fresh air.

So I think we'll be ok.

Worrier Jr.

2009-04-28T18:30:00.000-07:00

Diver is worried about swine flu. Everybody is.

But not everybody tapes gloves to their sweatshirt. Searches the internet for "flu suits." And asks when we're moving to Alaska.

I've told him the most important thing we can do is wash our hands. Wash our hands. Wash our hands. It's hard enough for neurotypical folks to handle this. How are our kids with autism going to get through it?

Parenting, Neurotypical and Otherwise

2009-04-27T17:53:00.000-07:00

Image via Wikipedia

Week #2 of CAP Cadet program. Diver is on his own, and Anonymom is marking time in a coffee shop. (Well, marking time is what she was doing until she plugged in her headphones and played Dawn Upshaw Sings Rogers and Hart.)

As Diver and I drove from one end of the metro to the other, I was feeling a bit holy about my willingness to drive so far for my child's activity. And I flashed back to my parents' schlepping me (and my three sibs) to ballet and drama and scouts and voice and piano and baton and .....you name it. There wasn't a night when there wasn't driving. I do it once and feel holy. Puh-lease.

Dawn and I are one hour into this (meaning the cadets have drilled and are now re-convening for education). I'll head back to the base in about 40 minutes and arrive as the Cadets are having their closing flag ceremony (Standing at attention! Saluting!) Its a good thing I'm not there watching because I'm laughing just thinking about it.

And that's a good thing. I don't laugh much. My heart is not often light. So maybe the Civil Air Patrol is good for me. Maybe CAP stand for something else: Carefree Autism Parenting.

Civil Air Patrol

2009-04-21T13:43:00.000-07:00

Image via Wikipedia

TO: Major J, Civil Air Patrol, Cadet Squad

Diver is looking forward to his first CAP meeting this evening and we look forward to meeting you. After discussing it with Diver, we wanted to let you know that Diver has some extra challenges. He handles them well, and often they are not apparent. Still, if he had a peanut allergy or diabetes or a hearing loss, we would inform you about that. Diver's challenge is Asperger's Syndrome, a developmental disability which poses some sensory, social and communication challenges. He has learned to compensate; sometimes he'll ask for a moment to think something over; or he'll take break; or he'll ask that something be explained a second time. He's quite bright and creative and we think that he and CAP will be a great fit. If you have any questions, feel free to ask me.

Cordially, Anonymom

TO: Anonymom,

We look forward to meeting you and your family. Diver is most welcome to check things out and if interested we have no problems with him joining up. We see everyone as equal and our officers are patient with everyone. If he is eager to learn and share his interest with us he will acquire a whole new batch of friends. See you tonight! Maj. J

After considering whether to disclose Diver's ASD to the adult leader of his new CAP Cadet unit, we took a conservative approach. We disclosed the nature of his challenges but steered clear of a label that might disqualify him. The Major's response was heartening, and we set off for the military base with great excitement (Diver) and anxiety (Anonymom).

Soldiers at the gate! MIlitary aircraft! Jeeps! Tanks! Officers in uniform! The meeting started with a call to attention and Diver was in heaven. They drilled, marched, had aerospace training. Diver was praised for his military knowledge and enthusiasm, and was practically guaranteed a place at the service academy of his choice. From their mouths to God's ears.

They tried to get me to enlist, too, but I'm already in CAP. Concerned Auti-Parents.

Birthday Party

2009-04-19T14:03:00.000-07:00

Image via Wikipedia

Yours, mine, our kids'. Birthday parties always make me nervous.

We've been invited across the street to celebrate the 3rd birthday of our neighbor's child. I think. The handwritten note said, "We're celebrating K's birthday Sunday from 4-7. Please stop by."

Does the invite include Diver? In the bad-old days, Diver used to scare these neighbors, who approached me to express their concern for my safety. It's been a couple of years since Diver engaged in the behavior (meltdowns, yelling, throwing things) that scared them. It's 4:00. We're off.

7:45 pm. Diver did great. There was so much for a child with autism to navigate: heat, crowd, noise, strangers, long waits, little kids, nervous mother. He was a perfect gentleman; courteous, helpful, thoughtful, funny. He could have done it without me. And that's the goal, right?

Plastics, Benjamin, Plastics

2009-04-17T15:43:00.000-07:00

Image via Wikipedia

In the 1967 film The Graduate, Dustin Hoffman's Benjamin is advised to go into plastics. Even then, no one advised that plastics go into him. Good thing. Because today's New York Times brings news of a n ew study linking childhood obesity to phthalates, the chemical used to soften plastics.

The higher the level of phthalates found in a child's blood, the more obese they were.

As I've shared here, Diver is increasingly overweight. Despite a healthy diet. Despite exercise.

Despite his (and our) doing everything right.

No wonder he keeps gaining weight. Just like the autism, it's not his fault. He's just another casualty of the toxic soup in which we live.

Grey Gardens

2009-04-14T07:50:00.000-07:00

Image by nolageek via Flickr

Prone in bed in front of my TV, I call out to Diver in his room, "Good Night!"

From his bed in front of his TV, Diver answers back "Good Night"

It's like Grey Gardens.

We're stuck here, Diver and me. Stuck with each other. I can see us growing old and derelict, the two of us, with the house crumbling around us. Not eccentric, because I don't think the Beales of Grey Gardens were eccentric. If you've seen the Maysles' original documentary on this aunt and cousin of Jacqueline Kennedy Onassis; or the musical by the same name; or the upcoming HBO film with Drew Barrymore and Jessica Lange, you'll see that the Beales were human. Co-dependent as any pair of humans living together doing their best. Each with defects and assets. But no more eccentric than anyone else growing old alone in relative poverty.

I can see that happening to us.

No one will make a musical about it. No one will be happy about it, although Diver probably wouldn't mind.

It's not what I envisioned for my life.

Stand guard

2009-04-11T08:25:00.000-07:00

Image via Wikipedia

There are days when I feel absolutely unable to be an auti-mom.

Take today. Please.

Already mucking about in the unstructured waters of spring break, I had to break to Diver news that would disappoint him. His special volunteer-gig at the Air Guard Museum was being curtailed. Not eliminated, but curtailed. Last year, we convinced the Director to waive the volunteer's minimum age requirement, and Diver spent whole days with the guys at the Museum. This year, they requested that he work a set two-hour shift at a particular aircraft.

Still a special privilege for any 12-year-old, let alone one with autism. But for Diver, whose heart and AS mind were set on a full day every Saturday, it was crushing. He wept, he wailed, he railed. He broke legos, and yelled at me for not trying harder to change the rules.

Poor, poor self-pitying me broke into tears at his misery and rage, my lousy single-mom birthday, and my inability to be strong and imperturbable. Meanwhile, Diver was searching for loopholes: "Let's say we forgot what time to come. Let's get there when the museum opens and they can't turn us away."

Make a list of my shortcomings and his and I'll be we'll have a complete set.

But I am who I'm stuck with. I gritted my teeth and said, "Diver, I get sad when you're sad. But disappointment is part of life. We have to deal with it. Show them how competent you are and maybe they'll extend your hours. We are not going early. We are abiding by the rules. We'll leave at 11:15"

"Now! 11:00! 11:10! 11:14!"

I am not discussing it.

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