Regent of the Interregnum

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

When autistic behavior is misunderstood | Washington Times Communities

How well we know. And understand.

Brace yourselves

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

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

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

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

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

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

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

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

Smiley face

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

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

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

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

Image via Wikipedia

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.