Wednesday, July 29, 2015

On My Toes - Learning about Grace

People who see me in action with Matthew will often comment, “well, he sure keeps you on your toes.”    Greg and I are always anticipating his next, unexpected move.  Sometimes it’s an amusing move, like the time in church at the end of the service when he ran up to the pulpit to wish everyone a “happy Sunday” on the microphone.  Other times, it’s a dangerous move, like the time we were in a rental car and had only activated “child lock” on his door, but not on Kathryn’s.  Lesson learned.  He reached across Kathryn, manually unlocked her door and then opened her door while we were driving on a highway.  Thank God no one got hurt.  It took me months to get over that moment.  

For those of you who have never had to use it, "Child Lock" is found inside the car door and can be activated by pushing down this little switch.  Every car has it on the back car doors. 

 Matthew was invited to a family friend’s movie-themed birthday party last year, and we went together for about an hour of it.   All of the kids sat on bean bag chairs, eating popcorn while watching the movie.  I stood in my “ready stance” to the side of the TV and DVD player.  I know my boy, and when he sees a button, he is going to push it – it’s only a matter of time.  I was impressed that he waited about 20 minutes into the movie before darting to the DVD player to attempt his attack on pushing the DVD player’s various buttons.  I like to think that my time as a high school athlete helped develop my quick reflexes to defend the DVD buttons in the nick of time.   Crisis averted, the movie played on!   

Yup, I had skills back in the 80's!

I look at other kids his age and am jealous for a moment.   Jealous that their parents don’t have to strategically plan where they sit in church so their child won’t reach the pulpit microphone before they can catch them.  Jealous that their child understands the basics of car safety and won’t try to open a door in a moving car.   Jealous that their child will sit through an entire movie without trying to push the buttons on the DVD player to examine the cause and effect of that action.   Jealous that they can sit and relax and not have to anticipate the unexpected in each moment they spend with their child.   Keeping on your toes is exhausting.  Take it from me.  

In these moments, I know I am not graceful in my thoughts or my movements.  I am tripping over my own two feet after deflecting his reach for the DVD player.  I am hyperventilating after realizing the dangers that we avoided in the car.   I am not graceful.  I am clumsy.  I yell, I scream, I cry, and I learn.  I listen, I observe, I hope, and I pray.  I will continue to trip over my own two feet as I wait for Matthew’s next unexpected move.  I am not moving gracefully, but I am given grace.  The term, grace can be interpreted in many ways by different people.  The definition I relate to calls grace a gift.**  I have been given this gift.  The gift of Matthew.  Life gives us plenty of unexpected moments.  Thank you, Matty, for keeping me on my toes.  
On the microphone at church, wishing everyone a "Happy Sunday"!

 As I was finishing my edits on this piece, Greg told me he and Matthew were at CVS this evening – he turned his back for one moment and turned around to find Matthew at the MoneyGram machine – he was about to wire money using Greg’s phone number to someone in Belarus.  Seriously, you can’t anticipate that move!  

** Thank you, Dad, for helping me out with your "word geek skills"!

What's Your Favorite F-Word?

No, no.  Not the
F-word you may be thinking! 

Fabulous. Fantastic.  Fun.   

These are the words Matthew likes to use when he wishes his email and texting friends a “Happy Happy Fantabulous and Funny Friday”.  He even has shirts about Friday, his favorite day. 

Matty in one of his favorite Friday shirts!
Matthew’s love of Friday all started when he became interested in garbage trucks back in 
1st grade.  Yes, Fantastic Friday is our garbage day.  He would sing the reasons why Friday was his favorite day and we came up with a long list of more than 20 reasons why Fridays are so fabulous.  We had to write all these reasons down so we wouldn’t forget them.  (Pizza day, garbage day, Mrs. Strickland’s garbage day to name a few).

Has Matthew found the essence of practicing gratitude?   Yes, I believe he has.
He’s been making lists of what he likes about each day of the week for years, which translates into what he is grateful for.  “Mommy, Happy Happy Terrific Tuesday,” he blurted out this morning as he woke me up.  Although it’s an early wake up call each morning, he does begin my days with a smile since he is so positive as he lists all the things he is looking forward to during his upcoming day. 

Now, of course there are times when autism and intellectual disability get in the way of his joyful attitude towards the days of the week and his gratitude lists.  “Mommy, I
want to skip Thankful Thursday and go straight to Fun Friday,”
he tells me most
Wonderful Wednesday evenings when I am putting him to bed.  Waiting that one extra day to get to garbage day is just too long to wait.  Some Thursdays become Thrashing and Thunderous in our house because it’s in the way of getting to Fun Friday.  It’s really hard to live with Matthew when he gets stuck in this cycle of thinking.

As a mom who must practice “extreme parenting” because of Matthew’s special needs (thank you Suzanne B. for coining this phrase), I know I try my hardest to make the world a friendly and tolerable place for Matthew to live.  I want to make it possible to prevent him from getting stuck in his thinking patterns. 

o   Restaurant too loud?  Let’s go outside for a walk. 

o   Line for airport security a mile long?  Put Matthew in a wheelchair to bypass the line.**    
o   School van is supposed to come at 8:11 and now it’s 8:13?  I use my improvisational    
     skills as I spontaneously sing lyrics to him, which include reasons why the van driver is  
     late (like most individuals with autism, Matthew responds quickly and positively to music). 
o   Unfortunately, I do not have the ability to take Thursday off the calendar.    
     Sorry, Matty.  You’ll live.

A friend recommended a great book a few years ago about how to teach gratitude to kids (Raising Happiness).  One of the tips I took away from this book, is to pause throughout the day to let my children know when I have stopped to become mindful in the moment by saying something like, “tonight, when I lie in bed and think about my day, I will remember this moment with you as one of my favorite moments.”  The hope here is to teach kids how to savor moments and practice gratitude.  I love this lesson. 

One of the ways autism presents itself in Matthew, is his need for people to say certain things at specific times (yes, part of the stuck thinking).  After Greg takes a shower, Matthew always asks, “How was your shower, Daddy?”   Greg’s response has to be, “Refreshing.”  Matthew has gained a keen sense for when I am going to talk to him about savoring the moment.  Usually, just as I am about to say it, he will ask, “Mommy, are you going to think about this moment tonight when you go to bed?”  His autism makes him rigid, yet it helps him (and me) to remember to savor moments and practice gratitude. 

Yes, there are many difficult moments when I am just so F^<&ing exhausted of trying to figure it out.  Trying to figure out how he thinks so I can help him.  In these moments, I often do use my true favorite F word (under my breath of course)! 

Recently, in Matthew’s daily emails and texts to his family and friends, he has asked for a list of favorite W words on Wednesday or M words on Monday, and of course, F words on Friday (see example below).    When he requests the list of F words, I think he is trying to expand on his repertoire of alliteration for the days of the week, but I am going to allow his request for F words to remind me to make a mental list of what I am grateful for.  

One of his texting BFF's, Molly D. thank you for allowing me to post this great email you sent! (And thank you to SO MANY family and friends for keeping Matty occupied & happy with your daily emails and texts.)

Happy Happy almost Fun, Fabulous, Freaky Friday – from Matthew and me!

**Regarding my mention of using a wheelchair in the airport.  I will expand on that in a future post.