Twelve Years

Dear Benjamin,

A few days ago, you turned twelve.  I’m sorry I’m a little late.  We celebrated with two birthday dinners at your favorite Italian restaurant, a Yoda cake, your little “birthday vacation” to an indoor water park, and a night at a hotel.  A thorough celebration, as always.

You’ve had another huge year.  You’ve grown quite a bit and are about 5’2” now, which you are very proud of, and the big news is that you graduated from speech therapy!  Last year, I was concerned about changing our focus from occupational therapy to speech, but you have come so far.  I now know it was what you needed.  You had a significant deficit in pragmatics, the “why” of language, and you  spent the year working hard with your speech therapist.  You’ve made such huge gains that you no longer qualify for therapy, and you are now able to communicate so much better.

Your one Christmas wish this year was to go to Disney World, and Santa delivered!  I was anxious that you would feel overwhelmed or struggle with the crowd, but you absolutely rocked that whole experience.  You handled the crowds well, walked for miles, and were stunned and amazed  by the sights— especially the parades and fireworks.  You loved the rides, and your favorites were Peter Pan’s Flight, Thunder Mountain Railroad, and It’s a Small World.  You waited patiently in lines.  You exhibited nice manners at meals, and had your first fine dining experience on top of our hotel at, as you called it, a “fawncee “ restaurant.  You loved the characters and completely enjoyed a character breakfast.  We did not use a disability pass, and I am so proud of how you handled everything.  You never cease to amaze me, Bear.

You are doing well at school and have gained confidence with your reading.  You are still younger than your years in some ways, but I love that you still like to hang out with me and watch a movie or snuggle for a favorite book.  You still have a moschievous streak, but you are learning to be a good friend and a helper around the house.  You still love all kinds of music and going to the movies, and you love to go out to eat.  You are growing and changing much faster than I’m prepared for, but I can’t wait to see what adventures the next year will bring.

I love you more than all the water in the ocean, more than all the stars in the sky, and more than everything in between.

Love always from your biggest fan,

Mommy

Eleven Years

Dear Benjamin,

Today you turned eleven.  We've been celebrating for four days, which is very much the way you like to live life.    We had a small birthday dinner, cake, and presents on Friday. We spent Saturday at an indoor water park and took countless trips down the scary water slide that swirls you around in the dark and shoots you out backwards, plus spent the night in a hotel.  We saw a movie on Sunday and went to breakfast this morning, where you ate pancakes and sausage with syrup.  So many experiences, noises, and people,  and so much sensory input, but you rocked the whole festival of Ben celebration!  No meltdowns.  Limited anxiety.  Lots of smiles and fun.  And I am so thankful.

It's been another big year for you.  Last summer, we went to Carlsbad Caverns where you were NOT afraid of the dark and then attended a star party at night at the McDonald Observstory.  We went to the zoo in San Antonio and you were a trooper despite getting sick.  We went to Florida and you got to pet and feed a dolphin named Hemingway, play the hammered dulcimer with a friendly street musician named Robert Burns, spent some glorious time at the  beach, and watched fireworks over the pier.  We also went to the Albuquerque Balloon Fiesta, where you rode a sky tram, ate a lot of Mexican food, and asked more questions and were more engaged at the aquarium than I've ever seen you.

We adopted a second cat from the shelter, Tiger Lily, because you were afraid Beethoven felt lonely since she was the only family member with fur.  You are a very kind, compassionate soul, Ben, and I hope you always are one.

Talk about a big year.  This year, I made a tough decision.  Instead of taking you to private occupational therapy, you are seeing a speech therapist again, even though you've been talking for years.  Something wasn't connecting for you and you were struggling at school and to express yourself with your family, especially when you were upset.  You were evaluated and scored pretty low for pragmatics-- the context of language.  The why of it.  I was so worried about changing your therapy-- what if I made the wrong decision?  But you have just blossomed.  You are connecting knowledge and skills better at school, socializing more, asking questions at museums and aquariums,and even asked the dolphin trainer, who you had just met, why Hemingway had a scar on  his tail.  You are taking he initiative to solve math problems and are becoming more independent at school.  And tonight, my dear boy, you asked me to tell you about the day you were born.

You are eleven, but in some ways you are still very young.  You are naive and innocent.  You still giggle over story books and like snuggling while watching  cartoon movies, although you do enjoy some that aren't animated.  You still hold my hand.  You still need help with certain things.  And you still want a story before bed and Finding Nemo on the TV while your mom lies with you until you fall asleep.  So I still hangout in your bed (with the cats) each night and I still tell you,"I love you 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, more than all the mountains in Colorado, and more than all the buildings in Chicago."

Happy birthday, precious boy.  Thank you for being mine and for teaching me so very much about life and love.  I hope the next year is as full of happiness and adventure as this last one has been.

Love always from your biggest fan,

Mommy

Finding Dory and Some Disappointment on the Side

A few years ago, I wouldn't have dreamed of taking my boy to the movies.  We first tried when he was about 4 or 5, and it was horrible.  It was too dark, too loud, too crowded, too long, and too hard for him to handle.  And I am still sorry he kicked that poor lady in front of us.  Seriously.  Sorry, lady.

Now, Ben LOVES going to the movies.  We try to go to the first showing on a Sunday when it is less crowded, we sit at the back where he usually has a little space, we buy popcorn, and I bring a purse full of Tic Tacs, straws, and fidgets.  Those preparations allow us to have a great time and enjoy the movie together, as well as give Ben practice with social situations.  He looks forward to it and has a good time. 

Because of this, and the fact that Finding Nemo is one of Ben's all-time favorites that we watch a bit of every single night so he can unwind and go to sleep, he was beyond excited for the sequel, Finding Dory.  He knew exactly when it was coming out and was very patient when we couldn't go the first weekend it told me every day when we were going to see it.   Overall, I liked the movie.  But something has been weighing on me, and despite the fear that my concerns will be dismissed and criticized, I do have a concern regarding two minor characters: Gerald the sea lion and Becky the whatever she is.  Bird?  Duck?  I'm not sure.

Dory herself has memory loss, and I completely identified with her parents' fears, worries, protective tendencies, attempts to teach her how to remember, and their eventual intervention of placing shells in a path to follow so she could find her way.  I cried when she became upset and blamed herself for "leaving" her parents and causing them to worry and search for her.  But what confuses me is that while the characters of Dory and her parents seem to speak to people with special needs and teach understanding, the treatment of Gerald and Becky mock them and portray the opposite.

 Gerald and Becky have clear physical differences; Gerald has furry eyebrows and a distinct, pained smile, and Becky looks and acts frazzled and unfocused.  Neither talk.  Neither have a background or an explanation.  Both are treated badly and openly mocked by the other sea lions.  If you know kids with Autism, you know many have a certain "look" in their eyes.  To me, it is the look of trying their damnedest to fit in and conform to social expectations without understanding, really, what and why those expectations are.  Ben has that "look" from time to time.  Gerald has it every time he is shown.

The other sea lions won't let Gerald sit on their rock.  They use his need of acceptance and desire to sit on the rock with them to fulfill their needs, and then angrily shoo him off the rock again for no clear reason.  They use him and mistreat him, just like bullies do to people with special needs.  Becky has a bit of purpose and is helpful in the movie, but all Gerald does is retrieve his special green bucket (another reference to Autism, in my opinion), which is given to Becky and doesn't warrant him any better treatment.  There is no voice for him.  No one stands up for him or apologizes to him.  No one makes it better or teaches that kind of treatment as wrong. 

I do not claim to have any idea if this prevalent form of social bullying was intended in Finding Dory, but I do feel strongly that it was overlooked and must have been written by someone unfamiliar with the heartache of a parent of a child with Autism or other disability.  One of my biggest fears-- and I have many-- is of Ben being bullied and taken advantage of because he is so vulnerable.  The social world is very confusing to Ben and he does not understand or anticipate hidden agendas and ill treatment by others.  If someone is mean to him, he thinks it is his fault.

If someone else is mean to my sweet boy, HE thinks it is HIS fault.

He doesn't fight for better treatment.  He doesn't stand up for himself because he is afraid to get in trouble.  Social cues are hard for him. He thinks that the other child must understand these cues better and that what they are doing or saying must be okay, and this makes him susceptible to a wide range of terrifying possibilities.  Yes, I talk to him about it and arm him with words to say and a plan, but that doesn't make up for the fact that he has to identify bullying when it happens.  This is why Autism parents are so fierce when it comes to their kids.  This is why I will not tolerate any ill-treatment towards Ben or any ill talk of people around him.  I do not want him to think it is acceptable behavior to treat someone badly or that it is okay to be treated in that way.

This is why I felt like I'd had the breath knocked out of me when I saw the way the sea lions treated Gerald.  And, like Ben, I doubted myself and my feelings.  However, the more I think about it and the more time that passes since I have seen the movie, the more upset I am.  Society and the world we live in are already far too ugly without an entity as powerful as Disney Pixar mocking characters with differences in their successful, popular movies.  I teach children.  The things they say and do to each other are atrocious at times.  I tell them and my son to "put good into the world" to cancel out the bad.  I try to teach them to be better, but my influence is limited in contrast to what they learn from their parents, each other, and the influence of media.

I didn't anticipate the "bad" being taught to children in the form of an animated film that would be viewed by so many impressionable young children.  I am not suggesting that you shouldn't see the film or boycott Disney or whatever, but please consider using it as a teachable moment for your children, regardless of their age.  Please consider having a conversation about Gerald and the way he is treated.  He does nothing wrong or hateful in the movie.  All he wants is to sit on a rock with the others and feel like he belongs.  Isn't that feeling what we all want and deserve?

10 years

Dear Benjamin,

Tomorrow you will turn ten years old.  As always at this time of year, I can't believe how fast the time has flown.  You've grown so much and you ARE so much-- sweet, kind, smart, handsome, funny, mischievous, caring, and loving.  And you are still my greatest joy, of course. 

We are celebrating with a "birthday vacation" to stay in a hotel and play at an indoor water park.  You love pools and hotels, so you are excited about it.  You rarely ask for much; in fact, you are not materialistic at all, so I was surprised when you actually asked for a particular toy-- a talking Yoda-- and I was delighted when you played and interacted with it.  You do many things now that I once worried wouldn't happen for you.  

You had another big year.  You have become quite the seasoned traveler.  We drove to Chicago last summer and visited the Shedd Aquarium, Adler Planetarium, the Museum of Science and Industry, the Field Museum, and Navy Pier.  You dealt with all the new experiences like a champ.  We went down in a coal mine, rode a flight simulator, watched a 3D movie (you wore the glasses!), saw Sue the T-Rex, rode a big Ferris wheel, and so much more.  You enjoyed the trip, and I was so proud of you for communicating with me when you needed a break or felt overwhelmed.  

We drove to Florida over Christmas break, and you were pretty great on the trip.  In fact, you handled the drive better than the grown-ups!  You loved the beach, ate gator tail and all my shrimp, saw wild manatee in the river, and we watched pelicans fish and the sun set over the gulf.  

You live life pretty fully-- restaurants, movies, trips, laughing, and you love Star Wars.  You adopted a pet cat named Beethoven, pull your own loose teeth, and change classes multiple times in a day at school.  You've come such a long way and you find happiness everywhere.  You ask for very little and enjoy the heck out of everything.  I wish everyone was so wise.  I'm proud of you and the amazing boy you've always been. 

Happy double digits, Ben Bear.  I love you more than all the water in the ocean, more than all the stars in the sky, and more than all the wind in Texas.  I can't wait to see what your next year brings. 

Love your biggest fan, 

Mommy 

9 Years

Dear Benjamin,

A week ago, you turned nine.  NINE.  I can still remember counting the minutes until I could visit my tiny boy in the NICU and the sheer joy of bringing you home from the hospital at 23 days old.  One of my favorite Ben stories from that time is when you removed yourself from oxygen.  The nurse kept taping it back on and you kept yanking it back off, until finally they let you try to breathe without it and kept an eye on your ox sat level.  And you were fine.  It's a perfect example of your personality: you do everything in your own time, and when you are ready, I had better be ready to let you do it.  Now you are nine-- although it seems impossible that you are that old-- and nothing has changed.

You've had a big year.  You attend first grade in a regular class with kids younger than you who seem pretty accepting of you, and you have a wonderful teacher.  You start and end your day in an ACC class to go over your schedule and get one-on-one practice.  You have gotten fairly adept at asking questions and are curious about the world around us, you navigate your iPad like a champ, and you still enjoy all kinds of music.  You like to read non-fiction books to learn new things, but you still enjoy stories.  You also like dinosaurs and space, and you are still interested in classical composers.  We had to disguise a turkey as Beethoven this year, after all. 

You faced a big fear this year.  Tom took us to visit Tennessee this summer on our way to North Carolina, and we walked deep down into a dark cave to take an electric boat ride across an under ground lake.  It was very neat but very dark, and as long as I held your hand, you were quite a trooper.  You have an adventurous spirit and love seeing new things.  We went to the Georgia Aquarium and you got to see whale sharks and Manta Rays up close.  They are huge but you stood face-to-face with them in wonder.

You like science and learning about how things work, so we had another birthday party at the Discovery Center.  Some of your sweet friends from the ACC class got to come, along with several precious little girls from first grade.  The girls told me you are much nicer to them than the other boys and they seem to genuinely like you, which makes my heart smile.  One of them wrote a very elaborate note about you in her precious home-made card.  It's a keep sake for sure.  I am glad you are nice to the girls, and I hope you will always be one of the nice guys.  Sometimes it seems like there aren't many of them around, and I tell you every day before you go off to school to be kind and to put good into the world.

You are nine-- but in many ways you are much younger.  You still like Disney Junior, snuggles, tickles, cuddling in the chair with stories, giggling and being mischievous, and lots of younger-kid things.  You are so easy to make happy-- it's astonishing really.  You derive great joy from simple things-- chocolate ice cream, a favorite funny story, cute animal videos, a good stick, time to play outside, straws to manipulate, Tic Tacs.  That is a quality which has become very rare, and I hope you keep that one too.

I don't know what the future holds for you.  My heart often feels heavy with the questions.  Will you go to college?  Get married?  Live independently?  Be a father?  I just don't know.  I do know, however, that I fight every day for you to have what you need and for you to get every opportunity you can so that you can reach your potential.  Whatever that is will be enough, I know.  I feel sure you will be a good person, as you have such a joyful, caring heart.  You can't stand for anyone to be upset and will apologize (even when it is not your fault) and try to make them feel better.  You bring your friends and family much joy, and I hope that joy is always returned to you.

I love you more than all the water in the ocean, more than all the stars in the sky, more than all the wind in Texas, more than all the trees in Florida, and more than all the mountains in Colorado.  I hope this next year is just as amazing as each of the last nine have been.  I can't wait to share it with you.

Love always from your biggest fan,
Mom

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