Careful What You Wish For...

SMILE's language skills are improving every day.  He speaks so clearly, or tries to, and is so proud of himself.  But...now I am seeing how manipulative and super smart he is.  Take this for example: 

Yesterday, the boys were arguing over who would get to play the Wii first when we got home.  WINK asked first, SMILE burst into tears because "{HE} WAS JUST ABOUT TO ASK!" and Dad and I were already feeling migraines coming on.  So, as we often do, Dad and I intervened.  "WINK," we said, "you were nice enough to let SMILE go first yesterday.  You  get to go first."  Screaming, both joyful and indignant, drowned out all sounds coming from the car and near-by construction.  Then Dad asked WINK if he wanted to help him put together a kitchen bench we had just bought.

Immediately, and I mean as soon as Dad spoke the last syllable, SMILE piped up.  "That's a GREAT idea, {WINK}. You can help Daddy," he said, his little tone oozing sweetness, "and I can play the Wii!"   

And my beautiful WINK let him.

It's All Working!!!

SMILE saw yet another evaluator yesterday.  Hat's off to my little guy, too, because he's been poked and prodded a lot lately.  But this was for a "play" type test called the ADOS (I can't wrap my mind around what the acronym stands for), which is supposed to be the gold-standard for diagnosing autism. 

The only rule for DAD and I was that we weren't able to prompt SMILE during the test.  The evaluator tried to engage him in a variety of tasks (clay, puzzles, bubbles, etc) and watched his reaction to a variety of situations. Was he going to freak when he realized there was a piece missing from the puzzle?  No.  What about when she sang "Happy Birthday" to a stuffed frog?  Yeah, a little.  Will he react when the evaluator pretends to be surprised about something under the table? Nope, couldn't care less.  Smile was a bit twitchy and did the lobster hand thing a few times. He didn't want to stop talking about bubbles once he got the chance to play with them and, when he accidentally spilled a tray of letter blocks, he started repeating "D, D, D" over and over.

But  then...he made a butterfly out of clay, looked up, and asked the evaluator, "Do you like butterflies?"  I was a flurry of controlled and silent motion.  I leaned forward, eyes wide and immediately wet with tears, grabbed Dad's hand, looked into his just as wide eyes, and mouthed, "That was amazing!" He asked a question!  A real one that sought information about someone else.  Sure, he's done this with WINK, DAD, and I. He's probably done it with select extended relatives, too.  But THIS was a stranger and not prompted. THIS was great progress.

So....it's working.  The TSS time, the speech/ occupational/ physical therapies, the games DAD and I play, all of it. My little guy is coming back to all that potential he was born with. The evaluator spoke to DAD and I about expectations for the future and what we could expect for SMILE.  She referred to a piece of paper where she had charted SMILE's test results on a scale of 0-24.  She said something about his best chances for progress lying in the 0-7 area of the chart. That's not SMILE's box.  Neither is the next one.   But...these test results are fluid and they change all the time as the child receives more and more services.  Seven months ago, SMILE probably would have scored much higher.  He may have even scored higher or lower on a different day. 

So, we don't know much more than we did 24 hours ago but here's where MOM trumps all the professionals. He's going to be great. That's not wishful thinking, or sentimental eyes making that observation.  It's fact.  He will be great because he already is. 

Resiliency

SMILE amazed me today.  DAD had the daunting task of taking SMILE to get blood tests completed today.  I wanted no part of it. swearing that I would scoop up my child at the first whimper.  DAD and I had planned on not preparing him for the trip in an effort to head off severe tantrums that would have made leaving the house impossible. DAD was just going to take him and spoil his little butt off when it was done in an effort to erase the experience from both their minds.  But, to explain why he needed to get dressed,  DAD told SMILE they were going out "for a surprise."  I grunted at the mistake and decided we needed to be honest so SMILE wouldn't feel betrayed by the well-intentioned fib.   

Mistake.  SMILE's face crumbled as soon as we said he was going to the doctor's. "I don't want a needle!" he whimpered between deep breaths and sobs.  "I'm fine."  Dad and I tried to be soothing without saying that it wouldn't hurt.  We told him it would be quick.  We told him he would get a new book (or ANYTHING else he wanted) when it was over.  Many more minutes of crying passed.  Then...he sighed, stiff sniffling and moaning a bit, and said "I know I have to go...but I'm annoyed about the needle."

After the one more show we promised he could watch, SMILE dutifully allowed DAD to get his shoes on and left without complaint.  A little over an hour later, I got the phone call I had been waiting for.  SMILE did great!  He didn't struggle, he didn't cry.  He even watched the needle go in (TWICE!) SMILE got on the phone and cheered, "Mommy!  I did great job! I was brave."  In fact, DAD told me that he walked through the waiting room when it was over shouting excitedly, "It didn't even hurt."  One of the nurses called to him and gave him a thumbs up.  SMILE smiled and...raised his index finger proudly in response.  Hey! Close enough!  

My Fondest Wish

"Once upon a time..." That's how all great stories start, right? Maybe not the ones that win Pulitzers, but the ones that stay with us from cradle to adulthood do.  So began my boys' story.

Once upon a time...there was a girl who was shy and scared of the world and most of the people in it.  She had figured out at a young age that the best way to get through life was with her eyes averted and her head hung down.  But then this girl found a true friend and her world changed. 

No one understood this friendship.  The girl was so mousy and bland. The friend was so gregarious and SO VERY LOUD! Why would they be friends?  But  these girls saw something of themselves in each other and they leaned on one another, learned from one another, and loved each other unconditionally.  And the friend gave the girl a precious gift: a voice.

As the years passed, the girl became a woman, got married, forged a career...and had two boys. One of them is afraid of the world and most of the people in it.

So, my fondest wish is that my WINK and SMILE each finds a true friend like mine.  One who will love fiercely and hold on tight while he figures out his path.  One who will light his way...just like mine.

Giggles with WINK and SMILE

Sometimes having two boys on the spectrum just makes for a more colorful life.  Take these two recent giggle moments as proof:

After returning home from speech therapy, SMILE asked if he could have a lollipop.   I said he could and he quickly sat down and started in on unwrapping his treat. A few moments later, SMILE's mouth was smeared purple as he joyfully licked his way to a sugar Nirvana.  I leaned over the back of the couch.
        "Can I have a lick?"  (Now, kudos to you if you can spot the mistake I made because I sure didn't).
       "Sure," he said.  My little SMILE then leaned over, cupped my chin with his sticky hand, and licked my    cheek from chin to eyebrow.  CAREFUL WHAT YOU ASK FOR...


I sat with WINK last night as he read a story from of his textbook.  It was about a caterpillar and a duckling. Now, I know WINK has some reading comprehension problems, so I like to ask him questions after each paragraph to make sure he is keeping track of the events, characters, etc.   During one of these breaks, after the caterpillar climbs up to a high leaf and doesn't come down for weeks, I asked WINK why he thinks the caterpillar did that.  He said it was going to build a cocoon.
       "Oh, very good.  So, you think Farfanella (or whatever the name was) is going to turn into a butterfly?" I asked.
        "Well, of course," WINK said in a tone that raises many questions about my intelligence,  "it's a caterpillar.  What else is it supposed to turn into?"

Oh.
 

I dreamed a dream....

If you don't know, "I Dreamed a Dream" is a song from Les Miserables that is sung by a tragic character named Fantine.  Her story line in the play is a soap opera filled with abandonment, betrayal, poverty, and the decision to offer up her daughter for adoption. When I was in high school, and was first introduced to this play, I used to belt out every line with the full force of my teenage angst behind it.  Looking back, I laugh because I couldn't relate to one word of that song back then.  And, as a adult, my situation bears no resemblance to poor Fantine's.

But... her song is really about the moment that she realizes that her life, her reality, is nothing like what she had dreamed her life would be when she was younger.  And that, shameful as it is to admit, I can relate to.

I have a wonderful husband and  two boys who are the greatest blessings in my life.  But my moment of realization came seven months ago when one son, and then the other, was diagnosed with an ASD.  When I was a new mom, I never dreamed that my seven year old would have such high anxiety that he can't make decisions and be so socially inept on the recess yard that he can't manage to keep a friend. I never imagined that I would  still need to carry a make shift diaper bag for my five year old that now consists of umbrellas, fidget toys, a poncho, and snacks in a blue lunchbox. Once upon a time, I raised my boys along side other moms who had children as young as mine.  We commiserated over colic, rashes, potty training, nap schedules, and, together, we dreamed of the day that our little ones would be more autonomous. But then...their kids grew up and, in many ways, mine didn't and the gap between the two widened.  I contend with TSS schedules and intricate bed time routines that take me out of the loop for afternoon activities and moms' nights out. My boys don't interact much with other children so they aren't ideal playmates and SMILE's tantrums are epic. As a result, we aren't included in any impromptu  kiddie get-togethers that my friends plan with one another.  I don't think it's personal and I don't feel like my friends are doing anything wrong. We still get the invites to "family" birthday parties and anything that's planned far in advance. And I still manage to talk to them often and do "mommy day things" while the kids are in school.  But... I have an overwhelming "child-centric" schedule where routine rules the day so...what could they or I do?  Could I try to plan more kid events or even boldly invite myself along to the get-togethers when I hear about them?  Sure. But my fear is that any idea I have (a skating party for example) could, if it goes wrong, make the boys feel more isolated (like said skating party).  Same thing goes for events I invite my family to as opposed to events where we are invited. In the future, my boys' therapies may start working, and life will resemble normalcy, and I can't wait for the day. But, when I was a new mom of two and was forging friendships, I never expected to get left behind..     

So, why write this?  What purpose does it serve, right?  Well, I think it's empowering for 'spectrum moms' (or at least this one) to step back and say, once in a while, that "I dreamed a dream in time gone by" and that this life is "so different now from what it seemed" it would be like back then.  Because then, I can wake up and get back to living and a state of appreciating the blessings I have (which still includes these great friends).

Confusion now hath made its masterpiece

The more devastating aspect of WINK's diagnosis for me is that he probably has OCD (or a related anxiety disorder). I began noticing isolated incidents of odd behavior when he was a toddler. Small things, like stomping his feet four times between steps while going down the stairs, or crying if his seat belt wasn't pulled tightly through his car seat or was twisted (these could be compulsions). But I hoped it was a phase and began diligently looking for the slightest hint of an obsessive fear. As the years passed, I noted a few more examples of quirky behavior.  I'd have to phrase things "correctly" at times or give a particular response- "yes" instead of "okay"- but I still didn't see evidence of anxiety or fear.

Until recently, that is.  I think I figured out my WINK's fear.  He has to be understood and he has to really understand what is said, what to do, what to expect at all times.  This may seem logical.  Of course he wants to be understood and to understand, everybody does. But WINK is paralyzed by uncertainty if he isn't given explicit instructions or if he can't follow a rule.  WINK used one of his teacher's classroom books for a book report he turned in last week but he has yet to return the book to her.  Why?  She hasn't asked for it (!!!) and (on another day) it's too early because books go back to the library on Monday (it's not a library book...).  He also can't make a decision.  And I'm not talking about life and death decisions here.  It took WINK forty minutes and a lot of sobbing to decide on how he wanted to sleep last night- under the top sheet or above it.  Dad and I tried calming him in every way we could think of.  It wasn't until I rephrased it and told him that scientists have these dilemmas all the time (and subsequently made it into a science experiment) that he stayed soothed and returned to bed.

This scares me in a way that SMILE's tantrums do not.  There's a loopy kind of logic, a cause and effect, to SMILE's behavior. It's unpredictable but once an issue is figured out (he doesn't like to get wet) and a solution is found (put a poncho on him when it rains), that resolution is consistent.  But my WINK...

Divided we fall, WINK!

I feel good about a lot of the choices I've made as a mom, but the accomplishment at the summit of my pride mountain is the relationship I've helped nurture between WINK and SMILE.  Dating back to my pregnancy with SMILE, I emphasized WINK's pending role as big brother.  Before going into the hospital, I spread the word to family and friends that I wanted everyone to celebrate "WINK'S BIG BROTHER DAY" instead of shifting the attention to the new baby (it's not like an infant will know the difference, I reasoned). Whenever I talked to WINK about SMILE, I inserted "your" before the baby's name.  And as SMILE grew, I reversed it ("SMILE, where's your WINK?").  Of course, Dad and I wanted to establish a bond between us and our boys (I still often insert "my" before their names when I call them), but we both felt strongly that nurturing their connection would be a gift to them both.

And it has been. My boys love each other and defend one another endlessly when one is being scolded at home.  They hug and kiss every afternoon when they are reunited at the end of the school day and quickly name the other when asked to identify a best friend.   Of course, they fight.  They are five and seven year old boys, but hardly a truly critical, judgmental, mean word has passed between them.

That's why I was shocked this morning when WINK, sitting on the steps while I tied his shoe, declared "SMILE is weird." I wasn't even sure I had heard him correctly. "What?"

"Well, he is," WINK said defensively. "Why does he do that?" The veil of desensitization lifted and I realized SMILE was spinning and making repetitive sounds a few feet behind WINK.  Oh.

"SMILE thinks he's being funny, Honey."
"But he's not. It's weird," WINK stated. The irony of this made me chuckle because WINK isn't exactly the coolest cube in the ice tray.

I immediately started thinking of worse case scenarios.  Had one of WINK's classmates said something?  Had WINK overheard one of SMILE's classmates?  Or, worse of all, is WINK becoming a typical almost- eight- year- old in this area? Because, in all fairness, I understand that SMILE could be seen as a little...weird in the eyes of children (and uneducated adults, I might add).  But...

"WINK," I said with a calm sigh. "I don't like that word and I don't want you to use that word when you are talking about your brother."  He nodded and tried to lighten the mood in his typical overly goofy way.  And I smiled and got my spectrum boys out the door...my mind buzzing with one question:  What now?

Moving Mountains

I woke up this morning to the sound of my little SMILE's sleepy "Good morning, Mommy" greeting.  I opened my eyes, lifted my head from the pillow, and came face to face with my little man.  He climbed up onto the bed as I peeled up the comforter to make room for him.  He snuggled in close to me and squirmed as I bombarded his head and face with kisses. He flung his arm over his mouth and declared the "kiss store" was closed. This was my cue to feign horror and ask if there's a key, when will it open, is there a window, etc.  I'm not sure when this started with us but we've been doing it for a while and he still giggles when we do it.  I'd do just about anything to hear SMILE giggle.

Moments later, WINK came bounding into the room, jumping and flapping frantically in excitement. "Get over here," I yelled. He climbed onto the bed with no difficulty (Wow, he's getting so big!) and sprawled across me, SMILE, and our poor, startled dog.  As he often does with the SLIGHTEST encouragement, WINK declared his love for everyone in that room.  He's so grateful for every show of affection SMILE, Dad, and I rain down on him and, since DAD and I do it every chance we get and SMILE is surprisingly affectionate with his big bro, WINK is a pretty happy guy, indeed.

The rest of the morning-  breakfast, getting dressed- went off without a hitch.  Well, without unexpected hitches, anyway.  Sure, SMILE declared pants choices 1 and 2 were "too soft."  But Dad, invisible hero cape flying behind him, was armed with a no-fail 3rd option.  WINK wanted candy and was thrown by my mommy meanness (how could I NOT give my child chocolate before school), but was assuaged by a promise of a treat when he gets home.

But somewhere between getting socks on "just right", wrestling with knots in shoelaces, and getting buckled in the backseat on the car,  we arrived at school ON TIME but too late for the boys to go in the door they usually use. "Okay," I thought, "I'll just send them in through the cafeteria with the bus riders." I've done it before and the teachers have been wonderful about allowing me to walk through the room with them. 

But, today, mountains moved.  WINK and SMILE both looked up at me and declared they could get to their classrooms without help.  Actually, WINK looked a little doubtful as he took a deep breath and  set his little jaw in determination. SMILE, however, was the picture of confidence and refused even WINK's help.  Of course, I watched from the door and darted in and through to the far side of the cafeteria when I saw SMILE drift to the left when he needed to turn to the right. But I just nudged his shoulder and he moved on without hesitation.  I smiled at other moms as I ran back to my car and fought down the urge to go to the office.  Could they send out a rescue crew to make sure WINK and SMILE made it without incident and weren't crying somewhere, miserably lost and confused, in that labyrinth of a school?  I sat in my car, slowly drove off, and returned home.  Should I call? 

In the end, I did nothing. Because, today, mountains moved.  And it's my job to let them.