Why do I do this to myself?

Six days. I have been worrying myself sick for six days, mentally preparing arguments for every situation I thought possible, since SMILE's teacher requested a meeting.  I'll call her Mrs. T.  There was the "I think he should be in a learning support classroom" argument, the "SMILE's tics are too much of a distraction" argument, and the dreaded "kids are teasing him" revelation.  I read up on IDEA (individuals with disabilities act), ready to preach about my son's right to an equal education in the least restrictive environment (mainstream classes in SMILE's case) as long as he is striving academically. I was ready to suggest mediation sessions between the parents of SMILE's classmates and myself because I was sure some of them must have voiced concerns about their children's education being thwarted by the presence of my autistic twitchy son.  I was armed with grandiose ideas of what it means to be a teacher and I was ready to blast Mrs. T.  with the challenge to do her job.

But none of that happened. SMILE's teacher,  along with his speech teacher, wanted to sit down with DAD and I to discuss how well he's doing.

Excuse me? I know he's doing well, better than well. But...oh my gosh! They know it too?

Now, that's not to say that the meeting was a complete ode to SMILE.  He's made a lot of progress since the beginning of the year, accepting more responsibility and playing at recess, but there's still farther to go.  The true focus of the meeting was to discuss what I can do to help SMILE mature.

Oh.  Mrs. T sited some of the problems she had earlier in the year. Turns out, that my little SMILE used to plop his bookbag on his desk and wait for his teacher to unpack his books and folder.  At the end of the day, he'd whine that he couldn't get his things to fit back in his bag.  Now, she beamed, he does it by himself.  She asked about home. "When SMILE sits down to do his homework...?"
    
"...I unpack his bag and take his work out of his folder."  I think I actually hung my head.

Mrs. T laughed and asked that I work with her to help SMILE develop more independence.  I vowed that I would.

No sooner than we all left the meeting, however, Mrs T collected SMILE from the library where he had been waiting. I walked over and asked if he remembered where the book he had been reading belonged on the shelf.  At the first sign of frustration, I asked if he wanted me to put it away for him.  He said "yes." 

"OOH!" I grunted and made a face at the two teachers.  "Sorry!"

Ummm...When did THAT happen?

So, yeah, I know WINK's almost nine. Sure, theoretically, I know he's not a baby.  But, up until very recently, he was still my baby.
But now......WINK...has...a crush!  On a real girl, not a celebrity. AND SHE'S CUTE!  AND SHE'S REALLY NICE.  And...I think she likes him back.

Agh!

Now, I'm sure every mother dreads this rite of passage and mourns this undeniable evidence that, someday, her little boy will let some temptress (a-hem, I mean sweet young lady), steal his heart (ummm...I mean fill his heart, or complete him, or something like that), and usurp dear old mom.  When WINK was in kindergarten, there was a little girl who acted much older than her age. She kissed WINK on the mouth right in front of me and, when I startled, she said, "I'm sorry...he's just so hot!"  WINK turned to me as we rushed out of the school and asked, "Mommy, why did she say I'm hot?"  I tried my hardest not to laugh, and said, "She just thinks it's really warm in the classroom."

But WINK's older now and he's not an innocent five year old anymore.  He's an innocent (almost) nine year old who tragically wears his heart on the outside. He's been trying so hard to master how his peers talk and to learn about their social cues. But...liking a girl and knowing how to act is a new dimension.  Just tonight, WINK made a hugely inappropriate joke at dinner but he had no idea why it was wrong. SMILE was joking around and said "like pee-pee" instead of "like maybe" while singing the title sequence of a kids' show.  WINK, laughing, said, "Okay...I'll pull down my pants and show you my..."
     "Whoa, whoa, WHOA!  WINK, you can't say that, honey."
     "But I'm being funny."
   
Oh boy. So...I guess DAD and I need to think about discussing puberty issues with our little guy. Aspergers will present some unique challenges, but I think I'm mostly feeling like any other mom right now.  I know he's only eight...almost nine...and I'll have many more years with him at home. But I think I'm getting my first glimpse of WINK as a...eek!...man.  I see it in his slightly more angular face and his slightly aloof stance.  This is going to take a lot to get used to.  Maybe I'll have DAD call his mom. She probably needs an "I love you" from her little boy as much as I do.

"You've got to be kidding! Another spectrum?"

It's almost conclusive. My little SMILE has a tic disorder. According to his neurologist- I can't believe my 6 year old has a neurologist- SMILE's vocal and motor simple tics (grunting and movements that involve one or two muscle groups) suggest Tourette's syndrome.  His complex tics, those involving movements of several muscles at the same time, may be indicative of a secondary issue, however.  Turns out that Tourette's is one tic disorder on, you guessed it, a spectrum of tic disorders. What does that mean? SMILE may have something called chorea disease.  People with chorea experience movements that jump from one muscle group to another (like SMILE's head jerks that lead to shoulder shrugs) so that it loosely resembles a dance ("chorea"= "dance", derived from Greek).

So...now what? Well, blood tests need to be done to rule out infection and toxic levels of copper in his system.  An MRI of his brain with sedation is in SMILE's future to rule out a malformation or physical cause (i.e. benign tumor). Then a sleep-deprived EEG to rule out a seizure disorder. Finally, some genetic testing to see if there are any more surprises waiting to surface. If everything comes back unremarkable, then Tourettes is causing all the movements.    So...if I understand this correctly, SMILE has Tourettes and maybe another movement disorder. Or else, he just has a really bad case of Tourettes.

A Morning with William Stillman

I recently had the amazing opportunity to attend a seminar given by William Stillman.  Mr. Stillman has been dubbed the Autism Whisperer for his ability to understand the needs of people on the spectrum and his gift for communicating those needs to others.  His experience? He has Aspergers.


Within minutes, I knew that I had found my new guru. His number one "golden rule" when approaching  someone with autism is to "assume intelligence." I love that. He went on to describe people on the spectrum as "inherently gentle and exquisitely sensitive." He talked about the stereotypical behaviors most often seen- yelling, hitting, biting, crying, etc- and explained that these behaviors have NOTHING to do with autism. They are reactions to not being understood and being unable to communicate in a way that allows others to readily understand them.  This rang true for me.  I have always believed that SMILE's actions are not about SMILE being SMILE.  I've known that he is frustrated. I've learned to listen to my little man when he says "no." I've learned to slow things down for both my boys to give them more processing time, a change that Mr. Stillman said is a "compassionate modification."

When the seminar was over, I walked over to meet Mr. Stillman.  He had said that he is intuitive and can feel things by meeting a child or seeing a picture. He never asks to see diagnoses or professional files.  I showed him a picture of my WINK and SMILE hugging.  He said, immediately, that he was drawn to WINK's picture (makes sense, since WINK has Aspergers).  He said he is very funny, a little performer and comedian, and that he may be in the entertainment field. I laughed and he assured me this was true.  He asked if I had ever considered putting him in a play. I smiled and said that, ironically, I had just taken my boys to a workshop held by a local children's theater company earlier in the week.  He looked at me and smiled. "Interesting," he said. After a few more moments, he told me to trust my mother's instinct going forward. Then he added, before releasing my hand, "You already do. I'm just validating it."

The Zen of Finger Snapping

I have a secret. I'm 36 years old and, despite the fact that both my children can, I cannot snap my fingers.
So, teaching dear old mom has become WINK and SMILE's mission for the past week. Here is how WINK described the process to me today, with my thoughts in parenthesis, while I was driving my boys home from physical therapy:

     "Mommy?" (What now? I really don't need a dissertation.) "You have to focus (huh, good word...) your finger energy and channel (Did I just hear that?) it to other parts of your hand. To snap, you have to release some of the finger energy." (?!!) 

     When we got home, I asked DAD to repeat what he had said to WINK when he taught him to snap his fingers.  Turns out, DAD mainly showed WINK how to do it.  All DAD told WINK was...well, it amounted to gorilla grunts by comparison, so... it doesn't really matter.

But, just so I don't downplay my hubby's brilliance, he may have figured out something pretty spectacular.  Our poor little SMILE is, depending on the activity, up to as many as 160 tics in 30 minutes.  But...finger snapping seems to relieve some of his tics because it redirects his energy and focus.

Walking the tightrope

In past posts, I've compared the day-to-day living with my spectrum boys as a roller coaster, and the frustration of being optimistic in an often gloomy situation as a flume ride. But here's another.  Now that my boys are progressing and learning new social and coping skills, living with them is like walking a tightrope between hope and reality.  Unfortunately, my balance has never been very good, so I regularly fall to one side or the other.

Hope is a wonderful thing. I firmly believe that my boys have done so well because DAD and I have held on to the idea that all things are possible for them.  Sure, it takes a tribe of professionals and a few tired chiefs (us), but it would be impossible without hope.  The problem, though, is that all the mountains my boys have climbed have done nothing to level the terrain in front of them. They still falter. And, as tempting as it is to make believe that a good day is the beginning of a new dawn, a good day is just one good day.

So, in some ways, their progress makes the road more bumpy. Would I have it any other way? Of course not.  But, more often than a year ago, Dad and I find ourselves looking at one another during WINK's or SMILE's tantrums with dumbfounded expressions. "But..." we regularly say, "where did this come from? SMILE was fine sleeping in his bed last night!" or "WINK made a decision without much prompting at all yesterday!" or  "I thought he was over that!"

And then comes the moment of harsh reality. My boys are still autistic when the sun rises.  They are living with their variations of the same disorder on a day to day basis.  Sometimes, Dad and I make it easier. Sometimes, frustration and inflated expectations get in the way and...we don't.

But tomorrow is another day and maybe it will be a good one.  I hope.