New music freaks Aran out--it's often a struggle to get him to learn a new piece, and he often goes into a full autistic meltdown over mid-song key changes.  No lie!  He hits the key change, and just freaks.

And yet, he loves to transpose music on the fly.  One song that he just hated because "It's so hard!" he finally mastered. Just today he sat at the piano and played it, watching me out of the corner of his eye as he did so.

"Did you hear me play that?" he said.  "It's in C instead of G."

"Pretty good, " I said.  "Did your piano teacher tell you to do that?"

"No," he said.  "I did it because I wanted to."

Oddly, this was the song that has a key change in it.

Sheesh.

ARAN: Get out.

ME: Aran! That's not very nice. What do you say?

ARAN: Please get out.

This is probably going to get a flame war started.  Maybe we can roast some food nazis on it:

A Letter to the Ann Arbor Learning Community Parent List

I just noticed that =all= peanuts have been banned from the entire middle school.  This is a major problem for me and my family.

My son is autistic.  There are very few packable lunch foods he'll eat.  This is part of his disability; there is no way to change it unless someone at the school is willing to stand over him and coax him into eating every bite.  The phrase "If he gets hungry, he'll eat" does not apply to autists.  When faced with a choice between what he sees as "bad" food and hunger, he will choose hunger every single time.

Peanut butter sandwiches are one of about two foods we can send to school that he'll eat.  The other is pre-packaged, frozen macaroni and cheese.  (He's sometimes willing to eat leftover pizza, but we don't always have that available.)  The first has been banned out of fear of allergies.  The second has been banned because they take too long in the microwave.

What is my son going to bring for lunch?

The fear of peanut allergies has gone too far at AALC.  Was I the only one who raised an eyebrow at being told not to bring peanut-laden suppers for ourselves to the outdoor picnic?  No one is in danger of being exposed to peanuts from someone else's food outdoors.

If your child has a peanut allergy so severe that simply being in the same room with a peanut product is dangerous, you have my sympathy.  Having a son with autism isn't easy, either.  However, I don't quite understand why I must further limit my child's already limited choices for fear of what someone else's child may be exposed to.  I certainly don't require other parents to worry about my son's autism!

Middle school students are certainly of an age to police their own allergies.  They know not to trade lunches, use suspect utensils, or eat foods when they don't know the ingredient list.  They aren't five anymore.

A better solution is to set aside a peanut-free area during lunch.  Parents who feel their students are at risk for exposure can have their kids eat there.

The peanut-free policy at AALC is a hardship to my family.  It needs to be modified immediately to take my son's handicap into account.

I just learned that Aran has been avoiding sleep.  He says he tries to stay awake and stares at the ceiling in the dark until exhaustion finally forces him to sleep.

He's afraid to dream.

I asked him why, and he said, "I'm scared I won't be able to find my way back."

This is a completely new one on me, and it worries me.  I know a lot of autists need less sleep than neuro-typicals, but Aran has always been a good sleeper.  I'm not sure how to handle it.

I've reassured him that no one ever gets lost, that you can always find your back from dreaming.  I point out that he's always done it before, that everyone always wakes up from dreams.  It doesn't seem to help. 

A couple nights ago, I noticed the light was on in his room after he'd gone to bed.  I went in to check.  The room is lit by a floor lamp with an attached reading lamp on a flexible stalk.  Aran had turned on the reading lamp and pointed it toward his bed.  He woke up when I came in, and I asked him what was going on.  He finally said that having a light shine on his face stops him from dreaming entirely.  I know this can't be true, but he claims it's true.

So now he sleeps with the reading light shining on his face.

I don't know if he'll outgrow this, or if I should work harder on talking him through (and out of) this, or what.  I suspect he doesn't like dreaming because dreams are chaotic--the antithesis of autism--but it's never bothered him before.  I'm at a loss.

So there's this company that puts on cruises for families that have been touched by autism:

http://www.alumnicruises.org/Autism/Autism_Home.htm

The cruises are geared toward children with autism.  The crew are trained in how to deal with autists, they have activities for autists, they've altered the emergency drills so autists can handle them, they've altered the meal system with autists in mind, and more.  They also have sitting services so parents of autistic children can have some down time, and they have activities and support group meetings for non-autistic siblings so they can talk to other kids who understand what they're going through.  They don't charge extra, either--their prices are the same as a "regular" cruise.

Wow.  A whole vacation without worrying about whether the people around you would understand what was going on when your kid freaked out over the choice of restaurant or whether the workers would be understanding or whether the autistic child might melt down at the idea of doing something everyone else wants to do, requiring a last-second rearrangement of plans.

I was telling Kala about all this, and I found my throat getting thick.  Just the idea that there's a company that understands the problem and is taking steps to help--without charging extra for it.  They volunteered this.  No fighting, no forcing anyone to make arrangements, no making do.  This would be a place where you could just go and everyone would understand.  I couldn't finish what I wanted to say and had to leave the room.

We can't go.  The money just isn't there.  But I'm glad they exist.  And Aran's condition still strikes me from unexpected directions, even when I think I've dealt with it.

The title says it all.  Aran lied.

Aran can lie, and he's perfectly capable of subterfuge, but he leans more toward bending the law than breaking it, or using the literal interpretation to get away with what he wants.  When he was very young, for example, he watched Teletubbies videos to an extreme, and we finally put them away.  "Mom and I say you can't watch them anymore," I told him.  When his aunt Stephanie came to babysite, she asked what he wanted to do, and he showed her where the videos were.  Not knowing they were forbidden, she took them down and let him watch.  The moment we drove into the driveway, he popped the tape, shoved it into the case, and told her to put it back.  She hadn't said he couldn't watch them.

Anyway, Aran is a terrible liar, and he just doesn't do it.  Until today.

Aran wanted to use the computer we've set aside for the boys to use, but Sasha was using it.  Since Sasha had been on the computer quite a lot today, I said to Aran, "Tell Sasha I said he needs to get off the computer now."

Aran came back into the room a few moments later in apparent distress.  "Sasha said he's going to be on the computer for a long time and he won't get off."

I sighed.  "Tell him to get off now."

Almost instantly, Aran returned.  "He won't get off and he said I was acting like a baby."  (Aran hates being called baby; it gets him all upset.)

"Tell Sasha to get up here."

When Sasha came upstairs, he denied saying any such thing, and that he signed off right when Aran first talked to him.  More questioning of the two boys followed, and Aran admitted that he had lied about what Sasha said in order to "make Sasha get off the computer faster."

I told Aran that in consequence he lost computer until suppertime.

But he lied!

Remember the video of Beaker singing Ode to Joy?  You know, this one:


Kala discovered that Aran can sing all four parts.  Not all at once, of course, but he can sing each of them.  I'm trying to persuade him to do his own version of the Beaker video.

Today's "Dear Abby" column has a letter from the parent of an autistic child and a letter from a wonderful national foundation: http://www.uexpress.com/dearabby/?uc_full_date=20090716

I'm terrified about this for Aran:

http://www.theautismnews.com/2009/06/28/rise-in-autistic-adults-worries-caregivers/

All the research out there focuses on children.  This is because autistic children are seen as cute and "Awwwww!" and "We have to help them!"

But autistic children grow up.  Once they hit adolescence (as Aran is poised to do), they stop being cute.  No one sees them as helpless or needing help.  Instead they are seen as strange, weird, or even stupid.  A child who flaps his arms or twists his wrists or has poor social skills is tolerated.  A teenager or adult who does so is shunned.

As a society, we are unwilling to help adults.  Adults should be helping themselves, be on their own, not needing help.  We don't see a connection between children with disabilities and adults with disabilities.  For some reason, we unconsciously think that autistic children will be children forever.

But every single one of them grows up, and they grow up autistic.

Please write to your Representative and tell him/her to support this bill.  Please!

Autism Treatment Acceleration Act Introduced in U.S. House

On May 14, the Co-Chairs of the Coalition on Autism Research and Education, Rep. Mike Doyle (D-PA) and Rep. Chris Smith (R-NJ), along with Rep. Eliot Engel (D-NY) and Rep. Hank Johnson (D-GA) introduced the Autism Treatment Acceleration Act of 2009 (ATAA). This is a companion to the bill of the same name introduced in the Senate in April. The Autism Society applauds this comprehensive autism legislation focused around enhancing the quality of life for individuals on the autism spectrum and their families.

The Autism Society especially applauds the inclusion of support services for adults on the autism spectrum in this bill. Currently, the federal government provides for educational services until age 21; however, autism is a lifelong disorder, and when the school bus stops coming, individuals and families are often left to fend for themselves. ATAA creates a demonstration project to provide an array of services to adults with autism spectrum disorders, including: postsecondary education; vocational and self-advocacy skills; employment; residential services, supports and housing; nutrition, health and wellness; recreational and social activities; and transportation and personal safety.

The legislation also would provide for the establishment of a national network in order to strengthen linkages between research and service initiatives at the federal, regional, state and local levels, and facilitate the translation of research on autism into services and treatments that will improve the quality of life for individuals with autism and their families. A national data repository would be created to share emerging data, findings and treatment models.

Other key aspects of the bill include:

the establishment of a national training initiative on autism and a technical assistance center to develop and expand interdisciplinary training and continuing education on autism spectrum disorders; and
a requirement that health insurers cover the diagnosis and treatment of autism spectrum disorders, including Applied Behavior Analysis therapy, assistive communication devices and other effective treatments.
The Autism Society needs your help in order to help pass this critical legislation. Please contact your U.S. Representative and ask him or her to co-sponsor the bill. We’ve composed an e-mail describing all the vital aspects of this bill but it will be especially effective if you add your own story describing how ATAA would help you and your family.

The time to act is now. Please support this important issue today, and urge your friends to take action as well. Together, we can improve the quality of live for individuals with autism across the lifespan.

Blue Cross plans to cover autism therapies for children 2-5. http://bit.ly/pylfs.

I am SO angry.

Angry because they refused to cover Aran's therapy when he needed it, and now they STILL won't cover it because he's too old. Shitheads.

Aaaaand BCBS is spinning it to make it sound like covering therapy for auties is some wonderful idea they came up with.

As if no one had ever pushed them to cover it or as of they'd never refused to cover it previously. Like for us. Fuckheads.

I wrote two books in one year to keep up with Aran's therapy bills because BC refused to cover them. So what's changed in 5 years, I ask?

Sorry about all the swearing, everyone. I'm very upset. Though I suppose I should be glad for families who're now covered, it's hard to be.

http://www.uexpress.com/dearabby/?uc_full_date=20090421

Today's Dear Abby column mentions autism from the point of view of non-autistic sibling.  Worth checking out.

This one isn't mine, but it's shareable:

http://community.livejournal.com/autism/445050.html

These are the triumphs parents of autistic children live for.

Mackie is well into the Fun Stage.  This is, supposedly, the point at which children are at their best, the age between about six and twelve.  It's when they have enough independence to release you from the chore of constant care but are dependent enough to still need you.  They still think parents are cool.  They say and do cute things.  They're big enough to be fun to play with, but they still want to cuddle or be read to.

This is a first for me.

Aran didn't have a Fun Stage.  This isn't to say I don't enjoy being with Aran or playing with him or talking to him, but all interaction with him is filtered through his autism.  It's the elephant in the room, except we don't ignore it so much as deal with the fact that it takes up so much damn space it's hard to get to the Wii.  And I still tend to think, "How can I get Aran to _______ more?  What if I ask him about ______?  Or to ______?  Maybe I should challenge him by asking him some more abstract questions."  Even a game of Lazer Tag turns into play therapy because I don't dare miss an opportunity to help him develop.  So while Aran's Fun Stage . . . isn't.  Quite.

Sasha, of course, was just coming out of his Fun Stage when we adopted him.  We didn't even get the usual "honeymoon phase" that most adopted kids give their parents.  Sasha challenged us on the first day we took him out of the orphanage.  Six months later, he became a teenager, and six months after that, he entered adolescence.

Mackie was three when we adopted him, but was developmentally closer to two.  He regressed a little when we got him, too, probably in an attempt to be a baby again and make up for the fourteen months of his baby- and toddlerhood when he didn't have parents and his care came from a series of only semi-personal orphanage workers.  He "forgot" his potty training, he hoarded food, he wouldn't sleep by himself, he became a terror in school, and so on.

All of this completely skewed my expectations of childhood development.  I never expected my children to be nice, or simple, or fun.  I loved (love) them, yes, but it always came with a "What crisis is coming next?" question at the back of my head.

Now Mackie is settling into this Fun Stage I've heard about but never expected to experience myself.  He's incredibly cute.  He likes hugs and still wants to be tucked in at night, but insists on independence in the morning.  He runs around the neighborhood with the pack of local children, but he still thinks Daddy is pretty cool.  He wants me to go on bike rides with him, watch TV with him, play video games with him.  I don't have to think about how to phrase my questions for abstract content or wonder if he'll suddenly shift moods with adolescent suddenness.

So I'm going to enjoy it.

You'd think an autistic kid would insist on a tidy room.  Nope:



This is Aran and Mackie's room.

And then there's Sasha's place:



Note the manga draped over the lower corner of the bed.

I think there will be a Day of Cleaning soon.

While we were decorating, we played Christmas songs on the stereo.  Aran took to calling out what key the next song would be in, as in, "They're going to sing in E-flat."

Last year at this time, Aran didn't know key signatures.  What this means is that Aran's music memory is such that he can think of a song he's heard from before he learned how music works and name the key BEFORE he actually hears the key again.

Apparently somewhere in his head is stored every song he's ever heard.  He can access it and play it in his head so accurately that his perfect pitch kicks in and allows him to name the key properly, even though he hasn't listened to the song since he learned what a key actually is.

This is getting scary . . .