Short (But Willing to) Change

Swim

The other day we celebrated my “typical” son’s birthday by taking him to see a Cars 2 exhibit with some friends.   We pulled J.R. out of school so he could come along too.  I figured he’d enjoy the event for about four seconds, but having him home from school meant not having to rush back by 2:30 p.m. to pick him up.  Great parenting, I know!

As predicted, as much as J.R. LOVES ANYTHING having to do with the Cars franchise, he was ready to leave the exhibit about ten minutes after we got there.  I couldn’t blame him- aside from getting one’s photo taken with a life sized Lightning McQueen, Mater, and Finn McMissle (awesome!), there wasn’t a whole lot to do.  It didn’t help that somehow he was under the impression that he was going to be able to DRIVE the cars.  Oh boy.

Tantrum somehow averted, we topped off the day with a swim- and as usual J.R. played on the periphery.  While the birthday boy and the other kids (one of whom is J.R.’s age) splashed and fooled around, J.R. only intermittently joined in.   And why would he, seeing as he was well on his way to reciting the entire dialogue of Cars from start to finish.   Stopping to interact? CHILDSPLAY (pardon the pun)!

While Jackson’s godmother Jennifer helped keep an eye on the swimmers (and I fried my white bod to a crisp) we spoke about J.R.’s condition at length.  She cares deeply about both my children and me, and for this reason constantly reprimands me for selling J.R. short.  She always sees J.R.’s strengths, while I find it hard to ignore his weaknesses (which today involved treating the pool as an extension of Thomas the Train’s track.  Someone PLEASE tell me what it is about Thomas that has our kids with autism ENTRANCED?!). Urrrrrghhhhhhh!

After blowing out the four candles on his birthday cake (while his brother sadly couldn’t break away from his video game) it was time for my sons to say goodbye to our friends.  As the group approached the door, Jennifer turns to J.R. and says, mostly kidding, “Come on J.R., hop in the car.  You’re coming home with us.”  Without blinking, J.R. replies.

“Okay Jenn.  Mommy, I want to go home with Jenn and Katie and Ryan and I want to swim at their house and jump on their trampoline and play Wii Sports and…..” (all I hear at this point is white noise, because I am about to faint dead away), said J.R.

I was at a loss.

To begin with, I am not sure J.R. had ever expressed a more complete thought.  If I weren’t so concerned about imposing on Jennifer I would have him repeat that sentence over and over just so I could revel in this “typical” exchange.

Before I could think of a reason why he couldn’t go home with Jennifer, my exhausted friend who was probably hoping to put her kids right to bed, she looked over at me and said “Kristi, you know you have to let him come.  Even if he can only handle it for twenty minutes.  You understand that, right? J.R. wants to come home with us for a play date.  Without you.  Do you know how HUGE this is?”

I let J.R. go home with his “friends.”  The best part?  He was so excited about his first solo play date that he could barely contain himself.  He spoke to the kids directly about the plans he had for their toys (lol!) and kept reminding me that I was not invited to come.

I had tears in my eyes as they pulled away (I am so lame, I know).   I was reeling with emotion when suddenly I asked myself why on earth would J.R. want to spend additional time with this crew when from where I was standing it appeared he hadn’t yet noticed they were alive? Then it hit me.  J.R. is fully aware of their existence.  I don’t happen to think he expresses that awareness in a socially acceptable way (selective ignoring is rude, right?), but is J.R. really ignorant of others?  Of course not!  Holy parental breakthrough!  Little sneak.  He really does know what is going on around him.  Guess I’d better stop walking around naked and screaming obscenities at trash television (and no I don’t do those things simultaneously).

On Thursday I embarked on a daytrip with some pals and spent the night away from J.R. for the first time in ages.  He had a loose tooth (omg was I freaking out about that!) and naturally it fell out that very night.  My husband called to tell me that J.R. simply walked into the bathroom, smiled big into the mirror, then turned to him repeating the toothless grin.  When he asked J.R. where his tooth had gone he replied “I put it on the stairs, dad.”

Tears.  Again.  I had worked so hard trying to get J.R. excited about the tooth fairy and to NOT get excited about the blood and gore part.   The child can barely internalize the concept of “Saturday,” so how the heck was he going to get “tooth fairy” and “rinse with warm salt water”!?   Apparently, he did. He wanted the tooth fairy to bring him a Cars 2 car.  Naturally!

My point in all this?  Kids like J.R. are more aware of their surroundings than we can imagine.  You’d think I would have already figured this out seeing as J.R. often exclaims “I am going to beat your little ass in, mom.”  Oops, not only are our kids listening but they are repeating (and conveniently filling in the blanks)!

Am I a bad mom for having to constantly remind myself to quit short changing my child?  Maybe J.R. is progressing at a rate my brain hasn’t yet been trained to track?  Who’s the delayed learner now, I ask?  I AM THE WEAKEST LINK aren’t I?  Remove mommy from the equation and voila … normalcy suddenly becomes attainable Urrrrrrrrgh!!!!

My good friend and muse Julie O’s son is affected by a genetic duplication disorder.  She once wrote about what she pictures her son Ryan saying to her once he learns to speak.  I have never been more moved by a piece of writing (nor more motivated to monitor my own behavior).

I have lay in bed and imagined Ryan speaking to me. He thanks me for being his biggest cheerleader. He goes on to say how happy he is to have a mom and dad that treat him like any other child. We haven’t let his disability define who he is and how we have treated him. We don’t speak in front of him as if he isn’t in the room. He thanks me for remembering that he is a person with feelings. 

He is proud that his mommy brags about him like any other glowing mom does about their child.  He tells me how fortunate he is that he didn’t have to hear me complain about him to my friends or family. He says how happy it made him that we included him on all of the family outings, vacations and daily life activities. He tells me how much fun he had joining us even if he couldn’t participate in things that were “hard” for him.  He is thankful for birthday parties I planned for him even when it seemed like he didn’t know or care about his “big day.”  

When I hear Ryan’s voice he is going to tell me how grateful he is that I have accepted him for who he is. He is going to tell me in his sweet voice how good it has made him feel about himself that I embrace everything about him. I couldn’t bear the thought of him going through life thinking that I wanted him to be anything other than himself. I often listen to friends whose biggest dreams are for their special needs child to be different than they are. They are waiting for God to answer their prayers by making their child “normal.” Normal is conforming to the standard or common type. I don’t think “normal” is the same for any two individuals. We have worked so hard to get Ryan where he is today, why would we want to change that?  We are redefining normal. I don’t want to wake up 10 years from now and think back to Ryan’s childhood and remember spending the majority of my waking moments wishing he were someone else. I don’t have control over God’s plan. The only control I have is how I react to the plan.  

Thanks Julie for letting me use your words.  Thank you J.R. for accepting a mommy who hasn’t acted nearly as graceful, mature, and brave as she.

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