Breakthroughs

For the first time E-V-E-R, WINK asked three classmates to play on the recess yard. AND THEY SAID 'YES"!!!  This is huge progress for him.

I told WINK to find his shoes so he could help me get him ready in the morning.  I was busy doing other things when WINK yelled "I found them, Mommy." I continued doing what I was doing, looked over several minutes later, and was stunned that my shoeless WINK was watching TV.
{Sigh}...Serves me right: I told him to find them but not to put them on. 

SMILE is improving every day.   His little face is extremely expressive when he genuinely feels an emotion. He beams when he is happy and breaks hearts when he's sad. But when he is asked to make a certain face, he often looks maniacal. But now he can  imitate facial expressions that almost resemble the intended emotion. I secretly love his goofy, screwed up faces though.

Difficult thoughts on a difficult subject

I finished HOUSE RULES last night- I stayed up late to get to the end- and I have to report that I liked it from the point of view of a parent with children with ASDs.  I can't, of course, give away the ending or reveal any plot twists or points. I don't want to critique the plot any way. What I can say is that my copy is full of comments in the margins and in that empty page space at the end of some chapters. Comments like: "Wow!" and "Been there," or "That's so true" are everywhere. It was a relief to read passages about Jacob's meltdowns and Emma's (his mother) observations. Every time I recognized my little WINK or SMILE in what I was reading, I felt reassured that DAD and I are on the right track.  Because, as Picoult points out, there is no blood test for autism or Aspergers, and I do live with a small nagging doubt ("What if they're wrong") even as I put my faith in teams of professionals. 

SMILE is easier to label (relax! You know what I mean). He spins, he stims (repetitive movements or sounds), he tantrums big time. He has very little awareness of personal space- or just assumes that everyone would welcome him in theirs- and he is very controlling. He has had some interesting sensory issues: a period where he couldn't wear jeans, a time that he couldn't get wet, a few months where he couldn't see previews in movies. My little guy is probably high functioning, but that boy has definitely fallen into the spectrum pool and has tasted the rainbow. Jacob has many of the same "quirks" but to a greater extent. This makes me think that either Jacob has high functioning autism or SMILE has Aspergers. Then again, many professionals believe it's the same thing and almost all that I've met cringe when they are pushed to categorize a child at all.

But WINK...does SOME of that but not to the same extent. It's when I tell people that WINK has Aspergers that I'm given that "oh stop looking for problems" look. They point out that he's such a pleasure to have in class, in an after school activity, or over their house. "He did very well for me/here/with us," they almost all say. That's why I'm so happy about this book.  Suddenly there's a character who gets confused because he interprets things literally, gets so jumbled that he can't organize his thoughts to make a simple request outside of his comfort zone, and has a dry humor that makes the people who love him laugh out loud. A character who desperately wants to fit in but doesn't know how, who is easily manipulated because he believes that every person's smile means they like him, and who gets ridiculed and laughed at but doesn't understand why. And, thankfully, Picoult highlights the heartbreak Aspie parents feel while they watch their children struggle to learn social skills that other children are born knowing or effortlessly learn before pre-school.

And, like Emma, I adore my boys and see their strengths before I see their weaknesses. I put them first because that position in my life is their birthright. But, unlike Emma, I already make time for myself and I've reached out to friends who have been wonderful and patient while I figure this out. But I'm fortunate. Despite living in a situation that boasts an 80% divorce rate, I have an amazing husband who carries the other side of the banner to be our boys' fans. And I think this makes all the difference.

I should be sleeping

Life has been interesting lately.  DAD was called into work two Sundays ago, was gone all day, and our boys are just settling down into "normal" again. WINK and SMILE were fantastic that day, didn't give me a bit of drama, but the following week was a spiral into madness. SMILE had four major meltdowns (to qualify as a meltdown, the tantrum needs to be more than three minutes and involve at least two of the following: crying, screaming, pushing, kicking, pinching, hitting) and WINK got weepy over ridiculous Mommy errors (seriously, crying because I poured milk on his Lucky Charms...).
At least, I think DAD's absence was the break in their routine that pushed them over the edge.  But then a bunch of parents gave us something to think about: A lot of spectrum kids get fluky when the clocks change.  HUH! Never considered that and the clocks DID change the same weekend that DAD was called away.
Oh!  Here we go again. A few moments ago, DAD was called in to the boys' room. DAD just walked back in to our room with a pathetically tired SMILE but DAD is smiling wide.  "I can't argue with this," he beams. SMILE is wiping little tears from his eyes, holding his daddy's hand and whimpering, "But when I'm sleeping I can't be with you."  
Looks like I'm going to be up for a while.  SMILE is on my side of the bed.

So far so good...

There are parts of this book that are so right it is scary. But I'm going to do some research about some points.  I'll be the first to admit that I don't know everything about autistic kids or Aspies,  I just know my autistic child and my Aspie, but there are a few things I've read in House Rules that are surprising.  But so far so good.

My new homework assignment

Jodi Picoult's House Rules, published in 2010, was released the same month my little SMILE was diagnosed with an ASD (Autism Spectrum Disorder). Part of me was curious. After all, the main character, Jacob, has Aspergers and I already had an evaluation appointment for WINK. Maybe I can learn something here.

But most of me was afraid to read it. Jodi Picoult has a very large following and I respect her success. But my last foray into one of her novels, Nineteen Minutes, left me...a bit...frustrated. There were issues, motives, possible resolutions related to the bullying theme that I had hoped she would address but...didn't. The characters could have had more depth and diversity than the jock/bully and nerd/victim stereotypes but they...didn't.  There were many good parts and I could have loved the book and found it faultless. But I ...didn't. So, would it really be wise for me, I thought,  to read House Rules when, once again, the issue at hand is one I can so strongly relate to? I resolutely decided to avoid the book.

Then a strange thing happened. I was walking into a neighborhood bookstore recently and saw an advertisement in the window. A group of local educators were coming together to discuss House Rules. I looked at  the date on the poster. It was two days away. I knew I'd never be able to read it in time but I decided that I'd have to read it. 

So, I have about seven pages read, underlined, and annotated so far.  My heart is on my sleeve but my interest is piqued.  At best, I will continue to feel comforted, reassured, and validated that now countless readers will have a better understanding of the struggles these amazing children, their siblings, and their parents face every day.  At worst, I will feel disappointed if Jacob is nothing more than a stereotype of flapping and tantrums or if his mom never becomes more than the put-upon martyr parent.  But most of all...I really hope Jacob didn't do the crime he is accused of.

A Hodgepodge of Successes

Ahhh...where to begin? Parent/Teacher conferences were a few nights ago.  My boys, both in general education classes, are doing really well and holding their own. They struggle, SMILE with keeping pace with his classmates and WINK with reading comprehension, but they're making strides. Going forward, I'm sure there will be more issues and changes to IEPs, but I've learned to be adaptable which is a miracle right there. 

But the best part of the night was the three hour play-date my boys had with a few kids from the boys' school. Don't misunderstand, it was horribly awkward. WINK was a social disaster but our 8 yr old and 6 yr old guests didn't seem to notice. The important thing is that WINK tried to initiate conversations and tried to respond to what they were saying. AND THAT'S PROGRESS! Soon, our guests decided that it was time for my living-room to double as a coliseum for a Gladiator-type ball fight. I'm talking bouncy balls (the kind you sit on and bounce) being swung around like maces and smaller balls being thrown like grenades. Yes, it was potentially dangerous. Sure, it was not my shining Mommy moment. But it was so AMAZING and....little boyish. I swallowed my nerves, sat on my hands, and prayed no one broke a nose. But I let it happen because WINK needed to see it through. He needed to be successful.   SMILE didn't play. Instead, he grabbed his Paper Jams guitar and ROCKED OUT with his little self.

 But the next day's success was all about my sweet SMILE and his speech therapy re-evaluation. Back in September, SMILE's speech delays (processing what he hears and being able to express his own thoughts) meant that he performed on the same level as a 4 year old (he was almost 6 at the time). Now, five months later from the original testing date, he is performing on a 5 year 3 month level. That's a huge jump! There's still a delay and he'll continue with therapy, but he's going to make it. Just today, SMILE woke up because he had a bad dream. He crawled into bed with DAD and I but when I asked him to tell me about the dream, he said, "Actually Mommy, I don't want to talk about it."   My little guy has so much to say, so many beautiful and wonderful thoughts, and I'm so excited because people will soon get to hear them all.