Tuesday, March 8, 2016

slow songs

"Isaac, let's come up with some creative words."  I shift in my seat next to him on the bench at the kitchen table, while Isaac forcefully lays his head on the table.  Working on writing and using adjectives is a challenge.

It has taken a good hour to get homework into a rhythm, and things have started slide off tempo.

Then again, Isaac always has marched to the beat of his own drum. 

"This is too hard." He says. In my mind, I have to agree.  Lately, Isaac's focus and body control has been a struggle more than ever before. I know he is growing:  Physically, he is blowing by the hand-me-downs I had saved from when Ethan was his age.  I know that amazing brain of his is struggling to keep up.

How do I explain...

Have you ever tried singing along to a song that had an awkward cadence?  Those songs that have time signatures that seem to be so complex, you struggle enjoy them because you can't grasp their meter?  Those songs where you start singing along and right when you feel you have the beat, it shifts. You're left humming something unfamiliar.

This can be life with Autism. 

"Let's come up with those creative words, okay?"  I help Isaac bring his focus back to his homework assignment.

Eventually, we finished.  His paper was full of words like "fluffy," "giant", "soft", "stinky," and "interesting."  When we were putting his paper in his homework folder, he asked, "Mom, so what does interesting mean?"  "Well...it means...exciting.  It gets your attention and keeps you focused." 

Isaac nodded.  "Like my cars?"  His eyes flitted to the bin of Hot Wheels that he keeps in the kitchen.
"Yes, like those."  Before I could finish, he was making race car noises and running to the bin. 

I don't write music, and I barely read it.  I don't know much about epic symphonies or movements, but I do live with one.

Isaac has never been intrigued with slow songs.  He doesn't have a tempo for slow.  He is either full speed or complete stop, and working with him on how to self-regulate so he can find a happy medium has been the hardest thing I have ever done.  And it has gotten harder.

Sitting in a small office at Isaac's school yesterday, I listened as his teachers and advocates discussed Isaac's life, personality, his skills, and his distractions.  I added my concerns and my requests. Our yearly IEP session was one that reminded me both of how much progress Isaac has made, but also how much work he will need to accomplish.  I am always filled with hope and dread, one never overtaking the other as boxes are checked, goals are enumerated, and testing requirements are named. I think every parent with a child on the spectrum gets that feeling.

Being high-functioning means Isaac can fit in, yet, if I am being honest, he won't truly.  In a world of smooth cadence and expected rhythms, he will always have a unique time signature.  Unique is interesting...but it isn't easy.

He is the most complex, beautiful song I have ever tried to sing along to.  Even if I don't know the words...

I will continue to hum along.  Even when the beat drops and I can't keep up, I hum along.  Even if the drummer can't find the rhythm, I hum along.  Quietly, reassuringly, humming: Patiently, until we pick up the cadence again.

Saturday, February 6, 2016

breathing into paper bags

Well, hello.  It has been awhile.

You know the adage, "no news is good news?" It does apply in this situation. Mostly.

The past few months have been quite adventurous for our little family.  Instead of gifts for Christmas, we took an idyllic winter trip, just the 4 of us, to Cancun in December.  This vacation was just like pressing the reset button on life.  I highly recommend this.  (Although, when we booked the trip, the boys were going to miss a week of school since we opted to go prior to the high season of travel...after I breathed into a paper bag for a couple of hours, talked to myself in a corner while rocking back and forth about the make up work, I got over it--and I am so glad I did!)

We did some amazing things as a family.  We all snorkeled for the first time; swam with dolphins; Isaac even ate shrimp.  SHRIMP, people.  He ATE THEM. We rode Mexican buses, fed sea turtles, sat on the roof and looked for meteors.  It was a trip that will forever be embedded in our memories, and will produce topics of conversation around the dinner table when we have grandbabies.  I would say that's a gift that keeps giving. 

Isaac also celebrated his 9th birthday, to which I also breathed into a paper bag for a couple of hours, talked to myself in a corner while rocking back and forth pondering how my baby is 9.  After getting some LEGO sets and completing them in record time, Isaac announced, "this is my favorite birthday." He is entitled to this opinion, since his birthday falls around the holidays, he gets, oh, about 4 birthdays over a two week period.  He took cupcakes in to his class to celebrate in January, so just think about that for a second.  Whoever said having a birthday the week of Christmas wasn't useful didn't have a clue.

We also had our share of trials, because, let's remember, this is life and we are human. 

Ethan had the flu which developed into a terrible case of pneumonia.  His first experience with an IV, a trip in an ambulance, and an overnight stay at the hospital was, for the most part, pleasant.  No one likes to see their children ill, and as a mom, it strikes a chord in your heart of hearts to not be able to put a Band-Aid on and kiss it to make it better.  I have to say, though, I had my handy-dandy paper bag to breathe into and a corner to rock in, so I was just fine. 

Two days before Ethan went to the hospital, we gutted our upstairs bathroom.  Then, in my wisdom, I thought I might as well finish Isaac's bedroom that I had wanted to do for months, because this is what you do when you binge watch HGTV with your sick kid who has been home for a week.  My husband and I are a great team, and when we start a project, we are usually good about completing it in a timely manner.  But, setbacks happen...life happens. Frustrations set in.  Now, things are a little chaotic and disheveled.  To top it off, my dear friend texted me to say that her little boy broke his leg and would be needing help. I wanted to be available, and struggled with feeling guilty about not having time. Paper bag, anyone?

Breathing is living.  When we aren't breathing correctly, we can't catch our breath.  We breathe into ridiculous paper bags that do nothing but rob us of oxygen--of life--and we get dizzy and lose focus.

The story of Job makes me cringe but it is in the Word of God for a reason.  Job 33:4 says "The Spirit of God has made me, and the breath of the Almighty has given me life."  Here is a man who suffered as no one could imagine.  His friends had nothing but empty things to say, and he himself found himself in a corner with a paper bag, trying to breathe the breath of man, and not of God. 

We were not made by ourselves. We cannot sustain ourselves. Breathing into paper bags is useless. There is no magical inward source of life that we can tap into apart from God. We are renewed and regenerated by the work of the Holy Spirit in us, and that's not according to what we do alone.  

The past few months have been a time for me to re-examine where my strength and source of life is found.  It isn't found in doing things for others (although this is wonderful).  It isn't found in having perfection (which is a daily struggle for me). It isn't found in control (because, why is this even a word?) My life comes from the Almighty.  He made me, and He alone sustains me. 

I pray the same goes for you.

Breathe in His truth, breathe out His grace.  Repeat.