Joy

Mostly, I focus my energy on being a mommy, wife, and teacher.  That takes all of me on most days, but when I get a few minutes here and there, I read the news: local, national, world, whatever.  I like to peek out of this bubble I am so encompassed in on occasion and I feel the need to keep at least a tentative grasp on the outside world.  I tend to keep an eye on issues regarding civil rights, education, and children with special needs, especially, of course, Autism, but it seems I can't read a news source lately without hearing of a parent killing their child on the spectrum.

Intentionally.  Cruelly.  Impossibly.

Yes, raising Ben has been my greatest challenge.  It has been exhausting, frustrating, and heart breaking, and I have spent every single day of the last eight and a half years feeling like a giant failure to some degree.  I don't have enough resources, knowledge, time, foresight, insight, patience, intelligence, wisdom or energy to feel as if I am doing a decent job or giving him all he needs.  I do my best.  I feel insufficient.  I am exhausted.  And I ache over it.  Every.  Single.  Day.

But even when I am running late for work and he is screaming half-intelligibly, hitting his head, clawing his face, lunging at me, and crying about NOT wearing THE clean jacket, and I am thinking about how damn stupid I am for falling asleep before putting the other jackets in the dryer so that he could have the one he needs to feel secure enough to go to school and wishing tequila was an acceptable breakfast beverage, and I still have to go teach other people's seventh graders and he and I slept THREE hours the night before, and OH-MY-GOD-WHAT-THE-HELL-HAS-HAPPENED-TO-MY-LIFE is running through my head on repeat, I would NEVER hurt my child.

And I sure as hell would never throw my green-eyed, dimple-faced, brilliant, conflicted, anxious, sometimes infuriating, loving baby boy off of a bridge.

I brought Benjamin into this world.  He is my life.  He is my responsibility.  He is my greatest challenge.  He is by far my greatest joy.

The very last bit of news I read (and will for awhile) was an article  about that "mother" in Oregon, describing how she blogged about "the pain of raising a child with Autism."  And it made me sick.  Yes, there is pain, as there is anytime you completely give of yourself for the benefit of someone else.  I imagine there is pain involved in raising ANY child, as there is certainly pain involved in teaching the children of others.

But there is also joy.

Ben has the best smile I've ever seen and the happiest laugh I've ever heard.  It's rare that he engages in a genuine smile or has an authentic belly laugh, but when he does the world lights up.  Ben's laughs are innocent, joyful, and never mean.  He doesn't judge anyone, except sometimes his mommy when she forgets to dry his favorite jacket, but even then he doesn't hold a grudge.  He does not care about or notice height, weight, race, religion, financial status, or appearance.  If he thinks you are funny and nice, he likes you.  Always. He does not care about the newest, most expensive toys or dressing like everyone else.  That's not on his radar.  He is thrilled when you surprise him with gum or a bag of pipe cleaners.  He does not ask for toys in the store.  He has seen Monster's Inc and Finding Nemo and read The Lorax and Alexander and the Terrible, Horrible, No Good, Very Bad Day countless times and still enjoys every second of them.  He loves to snuggle and read books.  He is happiest with a trip to the park on a pleasant day and a nice stick for pretending he is playing musical instruments.  He loves classical music.  He loves chocolate.  He loves me and the rest of his family.  He is honest.  He is helpful.  He is mischievous and fun.  He is smart.  He is caring when someone else is hurt or upset.  He is genuine-- never fake.  He is joyful.

I adore him.  I love him with my whole heart and soul.  Even when it's hard to raise him.  Even when I am exhausted and frustrated and worried.

He is my joy.

There is joy in raising children with Autism.

Those kids--and grown adults-- deserve to live their lives.  They deserve to be loved.  If you know someone on the spectrum, please share the joy.  Please spread awareness.  And if you know someone whose mental health is suffering, please reach out to them.  Please help them get help.  Please help the children in their care.

8 Years

Dear Benjamin,

Last week, you turned eight years old.  As I do every February, I marveled at how fast time flies when raising a precious child and how much you have changed and grown over the last year.  In many ways, you are still  my sweet boy who looks for mischief and loves music, reading, and a good romp in the park.  You are still caring, helpful, sweet, brilliant, and a good time.  You are developmentally and emotionally younger than your age and still have some struggles that you overcome in your own time, but you work hard to persevere.  The last year of your life has most certainly reflected that very determined spirit you have.

We celebrated with an official birthday party at a location other than our home.  You have never wanted more than a small, comfortable family gathering with cake and presents, but this year you wanted to go all out.  We had a birthday bash at the Don Harrington Discovery Center with family, friends, and school friends.  The featured exhibit was Lego Castle Adventure, and you and your friends had a blast playing and exploring.  I was a little nervous, I must admit, that the party and crowd would be too much for you.  I also worried, as all parents of kids with special needs do, that your classmates wouldn't come.  I don't know that you would have noticed, actually, but you did seem glad to have them there and you handled the noise and crowd like a champ.  It was a wonderful day.

 

You asked for and received a new, bigger bicycle for your birthday from Tom and me.  You've shied away from bicycle riding because the balance, motor skills, and muscle strength required have been daunting and frustrating for you, but now you are so determined to ride that bike.  We took you to a parking lot a few days ago to practice, and you did an amazing job with it.  You fell a few times and hopped right back up, and you gave us an awfully hard time keeping you in the parking lot.  That mischievous dimple you have was present every time you tried to "innocently" steer your way into the street.  You give us a run for our money, young man.

 

This last year presented a difficult choice for me.  Your teacher believed you would benefit from being held back in kindergarten.  You had started a year late due to your PPCD placement and the time and effort it took in your second (and much better) school placement just to teach you to negotiate and deal with the demands of a typical school day.  You attended an inclusion kindergarten class last year for part of your day and an Autism ACC class for the rest.  This year, you have absolutely thrived in the inclusion class full-time, with support in the special education class after the kindergarten school day.  My heart aches a bit over the possibility that you might be teased later on for being two years older that your classmates, but things are clicking so well for you that I know it was the right decision, even if it was difficult for me to accept.

You are reading, counting, adding ,subtracting, and writing better and better all the time.  Writing has always been an extremely difficult task for you because of your fine-motor delay and struggles, and it has frustrated you to the point of tears and task-avoidance.  This year, however, you have not only learned to write, but you have won a second-place award and then recently a first-place award in a grade-level competition at  your school!  You were awarded a blue ribbon, T-shirt, and a celebratory lunch at the Amarillo Club with your principal and other winners!

"I think music is beautiful.  Music is made by lots of people that play at the same time.  They play different instruments at the same time.  That is what I think is beautiful."

Your words moved your mom to tears, and I am bursting with pride not only over your accomplishment but the shear amount of effort it has taken you to come so far.  I always tell you that you can do anything.  I hope your success this year is teaching you that.

Your huge, amazing eighth year of life also included three trips to Florida to visit Tom's home state.  You handled that disruption in your routine and environment and two day road trip (each way times six!) as well as could possibly be expected.  You embraced and loved the new experiences, including swimming at natural springs, the beach, hanging out at your new grandparents' home in the woods, riding four wheelers, collecting shells, writing your name in the sand at the beach, feeling waves crash against you, and you even ate gator tail!  On the way back from our first trip, we spent a night in the French Quarter of New Orleans, where you maneuvered through the crowd on Bourbon Street and listened in awe to a jazz band play, and then we spent another night on the San Antonio River Walk and saw the Alamo.  You embraced the new experiences and had a blast!

 

 

This last year has been full of adventure, fun, and triumphs.  I feel like I am leaving so much out-- your tonsillectomy, first time at the Tri-State Fair, trick-or-treating at the zoo as Link the elf, etc, etc, etc.  Etc.  I know each year will bring new changes and challenges, more successes, and an abundance of joy for you.  I am so proud of you, Ben.  You amaze me and bring me happiness every single day.  I am honored to be your mother.  I love you, Ben Bear, more than all the stars in the sky, more than all the water in the ocean, more than all the wind in Texas, more than all the trees in Florida, and more than everything. 

 

Love always from your biggest fan,

Mommy