the ride.

autism home rescue 07051201

I just wanna be the mom.

Alex’s head rests on my shoulder in the waiting room, my arm across the back of his chair.  He lets me kiss his hair.  He doesn’t feel good.  I know, his father knows.  We need someone to explain why.

Another puzzle.  His belly, his behavior.  Specialists.  A second appointment.  “You do know your child best.”  Consult, consult, re-evaluate, adjust.

The weight of Alex’s body against mine grounds me because I know he is seeking comfort and he finds it in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I just wanna be the mom, the one to stroke his hair and bring him soup.  To talk softly or read books.  To let him rest on my lap.

But so much of the time that’s not how it seems to go.  Parents lead teams, fight for justice, find answers, forge new paths…. don’t we?

< sigh >

I am just the mom.  Maybe I’m supposed to feel as if I’m on a horse charging through the forest, riding on to victory!  Wind in my hair, a confident counterpart to a powerful animal leaping obstacles.  Adrenaline rush and excitement at conquering the challenge!

But no, my reality feels more like the Teacup Ride at the amusement park.  Tinny carnival music slightly off key, clanking of safety locks & bars, the whir of start up after a half-hearted warning about risks & keep-your-hands-and-feet-inside-the-car by a lazy, monotone, uninterested attendant.  Then the exhilarating feeling of leaning to the right to be abruptly yanked to the left into an endless circle.  Sliding along the seat, bumping into your cup-mates, grabbing the wheel in the middle to stay stable– and wondering who else might turn it at full force to make your stomach flip flop as you fly around again at nauseating speed.

If you resist the momentum or try to focus on real life beyond the ride, you feel sick.  If you yield to the movement, you find a fleeting thrill– maybe even a joyous freedom.  Then it ends too soon and you’re back to the hot, crowded line to wait for another try.  It’s the resistance that causes pain.  And whether you ride without resistance or not, you’re likely to make yourself sick anyway.

I just wanna be the mom.

I hold my breath and attempt a calm smile, an even tone, picturing a ballroom dancer in a flowing dress being led by her partner around the dance floor, poised gracefully to be turned and dipped and spun at will.  Giving the illusion of control and strength, able to dance without falling, to step without causing pain, to perform a role.

“Yes, we have the information you requested.  Could you please tell us when we might be seen?”

All the while, my mind seeks answers, spinning like a tea cup, trying to focus, feeling confused and frustrated, wondering why this all can seem so hard.

I just wanna be the mom.  I was born to be the mom.  Not the spinning performer, the equestrian archer, the triumphant solver-of-problems!

When it all comes to a complete stop, when my day ends and the safety locks slide apart, I find my footing and move again to the sidelines.  I feel tired.  My head rests on Aubrey’s shoulder and I sink just a bit, as her arms wrap around me, holding me still to stop the spinning inside.  There is relief in that unspoken connection.  It is communication and I know what it means, I understand and don’t second guess.

I still just wanna be the mom.

I will try again tomorrow.

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~* magical imagination *~

Who says kids with autism don’t play or think imaginatively? 

tinkerbell-movieYes, they are often visual kids.  And yes, sometimes Super Literal.  I’ve been reading some wonderful blog entries lately with funny anecdotes about kids on the spectrum not being able to lie.  Or about teens trying to grasp the concept of “a little white lie” like when you say:

“Thanks for the sweater, Nana, it’s great.”

when what you really think is:

“Ewww!  I don’t wanna wear that ugly thing!”

Alex is particularly cute about lying.  He can bend the truth a bit if he really wants something.  He’s so charming and manipulative, my boy.  He’ll avoid the true answer by trying to divert your attention.  As in:

Me:  “Are you hungry?  Do you want more dinner?”

Alex:  “Five minutes til chocolate cake?”

Or…

Me:  “It’s time to go home.  Where are your shoes?”

Alex:  (big grinning hug)  “Mommmm.  I love you!”

alligatorBut when it comes to yes/no questions, he’s stuck.  He just doesn’t know how to outright lie.  It’s like Roger Rabbit jumping out of his hiding place singing “Twoooo biiiiitttts!” when the movie villian taps out “Shave and a Haircut” on the table.  Alex just has to respond.

Alex:  “Mom, go downstairs to the living room, ok?”

Me:  “So you want me to go downstairs while you stay upstairs?”

Alex:  “Yes.”

Me:  (laughing)  “So you want me to go to the living room so you can stay upstairs and do something I told you not to do?”

Alex:  “Yes.”

Me:  (grinning)  “Okay, my little wiseguy, what is it that you wanna do, huh?”

Alex:  “Mommmm.”  (insert charming smile here)  “I love you!”

hot-air-balloon-8There is so much more going on inside the minds of children than most adults ever know.  With Hannah– who is, for better or for worse, as talkative as her mama– I know much of her thought process because she can verbalize it.  With Alex, I have to trust what I’m not able to hear.  And whenever I “take it on faith” that there’s a whole world going on inside Alex’s head, there always seems to be a wonderful moment of verification of his amazing imagination and creativity.

One of those moments is actually what prompted me to write today.  The background story is that our bedtime routine for the last couple months has involved my reading chapter books and poetry aloud to the kids.  We’re currently going through the Magic School Bus series (which I recently discovered is Alex’s favorite– see the Happy Birthday post!).  A few nights ago, Alex and Hannah did bedtime with Daddy without me.  Since reading aloud is kinda my thing, they decided to tell a story together instead.  It went like this:

Dad:  Once upon a time

Alex:  in a forest

Hannah:  Tinkerbell

Dad:  and an alligator

Alex:  went to a giant

Hannah:  to make their dreams come true.

Dad:  They dreamed of flying

Alex:  and they flew away on a blue balloon.

magical bookThe End. 

Magical imagination indeed!

Today’s Gratitude List

… the first post in what I hope will be a regular feature here…

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Sometimes life gets stressful, right?  All the moving from place to place, taking care of business, getting what we need, making plans, putting out the fires, starting new ones…  I’ve been trying to write for three weeks now.  And I haven’t been able to get one single blog post out.  Aaargh.  I have been as “scrooged” as can be.  Bah humbug.

This morning however, I watched my kids play a game of “hide and seek” and it changed my whole perspective.  You know that game, right?  It’s simple.  Kids love it, and they play it over and over at a certain age.  But to my son all the pieces of this game coming together is … well, it’s just beautiful, maybe miraculous.  Is that too dramatic?  Perhaps.  But if you know a child with autism, then I bet you can understand why a game of hide and seek could instantly change my bad attitude in a seemingly miraculous way.

Today I am grateful for:

  • A game of hide and seek initiated by Alex.  The fact that he asked Hannah to play, he found a hiding place while she counted, and when she couldn’t find him right away, he made funny little noises to lead her to him.  No adults involved, folks– no adults involved!
  • The fact that Alex’s stuffed animal kitty “played” too. 
  • Chocolate Yerba Mate tea.
  • Hot water.
  • The fact that Alex & Hannah greeted our wonderful babysitter at the door with such joyful commotion you’d have thought Santa Claus had made an encore appearance!
  • Hannah’s snuggling & snoring last night.

 gratitude-rainbowspiral1

What are you grateful for today?  Write it down & email me!

Who would break this heart?

Seriously, who?  Look at that smile… 

Alex close upOkay, by now if you’ve been reading regularly, you know that I’m somewhat of a sap.  It’s true, I admit it, I cry at McDonald’s commercials.  (And not just because the food they’re advertising is slowly killing our nation’s children… *insert loud sniffling sound here* …)  Seriously, I get sentimental.  I think it’s a hazard of truly knowing how to count my blessings.  Each day just brings one more thing to get sappy about.  Usually it’s something sweet my daughter said, or a new skill my son’s teachers discovered at school, something like that.  Rarely are my sappy tears tinged with that pang of real sadness that comes with grief or loss or longing.

But this afternoon, my heart ached for my boy.  For about a week now Alex has been out of sorts.  Not quite himself, acting out, on the verge of  a meltdown.  And today he flat out punched a teacher.  Of course she called me right away to tell me what had happened and we spent a good bit of time on the phone trying to sort through what might be going on inside Alex’s head.  Perhaps it was hunger, after all he is growing.  Maybe it’s classroom dynamics, had there been any rearranging of activities recently?  The change of weather, seasonal allergies, maybe coming down with a cold?  (And of course my greatest fear is ever-present in the background of these conversations.  That maybe I’ll never know what’s hurting my child or what’s really going on.  Maybe there is no answer, no logical conclusion.  At all.  Ever.)

After milling over the conversation with the teacher and all the possibilities for a couple hours this afternoon, I decided to head home from work early to spend some extra time with Alex to see if I could help him get things back on track.  When I arrived, Alex and his team were just coming home with little sister Hannah from the bus stop.  I could see Alex was sad, but sometimes hyper and sometimes on the verge of angry.  He alternated between running to the window, looking out at the neighborhood longingly, smiling to himself; and muttering to himself in a frustrated way or looking like he was about to cry.

Yesterday afternoon at  the bus stop with Alex, I noticed how particularly excited he was and how he seemed to be showing off for one of the girls who had accompanied her mother to meet her sister.  He kept saying “Meet friends at the bus stop” loudly and walking over to them.  The mother looked like she didn’t even know what to make of Alex, and the little girl just stood silent.  I tried to encourage interaction and explained, “Alex wants to say hello and be friends, but he’s not quite sure how to do that.”  She smiled politely but didn’t even attempt to say hello back.  Poor Alex was doing his best to smile, make eye contact, and impress this girl with his jokes and funny plays on words.  But she seemed to be having none of it.  (In her defense, maybe she was home sick from school or there was something else preventing her from coming forward to join the conversation.  Still it was heartbreaking to watch.)  So apparently today Alex had thrown a fit at the bus stop when he tried to get on the bus to talk to the same girl and was told by the bus driver that wasn’t allowed. 

Take a sensitive ten year old boy whose receptive language and comprehension are perfect, put him in a body who’s expressive language is impaired and whose social barometers are skewed.  Then amp up all the typical desires, challenges and emotions that go along with being a ten year old guy.  Throw the whole thing into the world of elementary school “bus stop politics,” add a parent or two who are essentially clueless about kids who are different from their own, and mix in the absolute embarrassment of a public meltdown.  What do you get?

For me, I got a pang of sadness.  I ached for Alex and wished so much that the object of his affection could see how hard he was trying and would feel compassion and interact with him.  I wanted the other moms and dads and kids to see what I see in my son.  I wanted them to know how much it took for him to be socializing the way he was.  And goshdarnit!  I wanted them to recognize how special that whole situation was and how lucky they were to be part of it.

But my blessings are not their blessings.  And honestly, I don’t know if any of the other players in this scenario know how to count them or not.  When I was a kid, I was like that little girl.  I wish now that someone had shown me how to reach out and take a chance on something or someone new.  I see the amazing ways my life has been enriched by the extra special folks I’ve come to know in the last seven years.  That is my blessing and I am lucky to recognize it.

In the early years of Alex’s autism, my friend Susan recounted a story about seeing a mother in Bloomingdales department store yelling at her little girl because she spilled ice cream on her dress.  Susan said if it weren’t for her oldest daughter with ASD, “I coulda been that mom.  Now I know the dress will wash, the spill doesn’t matter.  But I so easily coulda been that mom yelling at her kid.  I am grateful for my daughter because she changed me.”

Alex, sweetheart, girls are silly.  Sometimes they act strange and it’s okay if you don’t understand them.  I think nobody really does.  Remember that you are smart and funny and handsome, even if that silly girl didn’t pay any attention.  You have many gifts to be appreciated.  It’s your challenge to communicate out there in the world, but you keep trying because you’re doing great.  And at least one girl- your mom- is grateful to know the wonderful person you really are.  Thanks for changing me.