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

Seven Years

Dear Benjamin,

Tomorrow, you will turn seven!  You received a big trampoline this last weekend, and we will have a small, low-key party for you this Sunday.  You have chosen a LEGO theme, and your great aunt Lenis is baking chocolate cupcakes at your request.  Time is flying faster than your mommy ever could have imagined.  This year has been huge for you!  Gigantic!  You have made so many gains and experienced so many changes.

You now have six big boy teeth!  Your face hasn't quite grown into having those big-boy front teeth yet, but you are the cutest bunny boy ever!  You actually pulled the two most recent baby teeth yourself.  We discovered they were very loose and when I offered to pull them, you told me no, not yet.  Within an hour, you walked up to me and very casually handed me one, and then the other a few minutes later.  "I pulled my tooth.  It was too loose," you said calmly and walked off, leaving your mommy speechless.

Speaking of speech, you were released from speech therapy this year!  You met ALL of your speech therapy goals and actually have an advanced vocabulary for your age.  THIS from the boy who did not talk at all until you were three and a half!  You had been in speech therapy since you were two, and I am still amazed at how quickly your speech developed once you began, but that's typical of you: you do things in your own time and once you decide to do something, you go for it.

You have had a huge year at school and are doing so many new things.  You spend part of your day in an Autism ACC class, but you attend kindergarten (with an aide) for reading circle, lunch, and recess every day, and you also attend music class and go to the library with them.  You choose books to check out and tell your class about your book after we read it at home.  You are learning to read some words, are writing better, doing math, learning math facts, and are cutting paper on your own.  You are mastering objectives and moving on to new ones regularly.  Fine motor skills are a struggle for you, but yours have gotten much better this year.

Other things have changed, too.  We have new people in our lives.  Your mommy actually went and fell in love with a wonderful man this year (and his son and family).  You love him, and he loves you back.  I was very worried about introducing another person into your life, because you are and always will be my most important person and biggest priority.  I was afraid you might be upset, that you might not accept a new person, or that he might not be the right new person for the two of us.  Fortunately, it has gone better than I ever expected and my heart melts every time I see the two of you playing together.

In many ways, though, you are still the same.  You still seem much younger than your age, which is a hallmark of the spectrum.  It's good in many ways, and difficult in many others.  For example, you are suddenly very aware there are separate public restrooms for men and women, but you are also too young to go to the restroom in public by yourself.  You still get too distracted to go through the whole routine without supervision and you are WAY too vulnerable to strangers.  You do not understand this and have started howling loudly, "Wait a minute!  I'm a BOY!  BOYS don't go to the WOMEN'S restroom!"  Did I mention you howl it loudly?  While in public?  Oh, good.

I am trying to learn how to properly negotiate this struggle of some parts of you growing up faster than other parts of you.  It's a work in progress and you and I both are going to have to have patience with each other.  We are working on getting you on track with focusing on tasks and doing things independently, and when I say we, I am talking about an impressive team.  Besides your family, you have an awesome occupational therapy assistant, wonderful teachers, and very  helpful, patient paraprofessional aides.  I know we will get there.  Most importantly, I know you can do ANYTHING.  You'll just do it all in your own time.  And that's okay.

You are still  my funny, smart, loving, sunshine of a boy who has an amazing memory, loves books, musical instruments, animals, blocks, sticks, and pretending to be a doctor-fireman-police chief who conducts an orchestra, and who never fails to make me smile.  I love you, Ben Bear, more than all the stars in the sky, more than all the water in the ocean, and more than all the wind in Texas.  The last one is your favorite, as you think it is silly.  Each new year will bring challenges and changes, but I promise I will be here to help you negotiate and face them successfully.  You will always have my love, and I will always cheer you on.  I can't wait to see what the next year brings.

Love always from your biggest fan,

Mommy

A Thought for Others

Poor little neglected blog.  I know it's been a long time.   It's not that I don't have things to write about, but life has been very busy.  Mostly good busy, as we have a new amazing man in our lives, but busy nonetheless.  This evening, however, something pretty special occurred, and I just had to drop everything and tell y'all.

Ben is technically placed in an Autism ACC class, but he spends part of his day in a regular kindergarten class for inclusion this year.  He has done very well (with an aid), and he is joining the  Valentine's Day party in the regular Ed class this Thursday.  We received a list of names, and Ben and I sat down to address his Lego Valentine's cards.

He is still struggling with fine motor skills, so writing his name twenty times was laborious.  When we were through, Ben said,"Wait!  We forgot Jonathan, Lucas, and Ryan!"  I checked the list.  No Jonathan, Ryan, or Lucas.  I asked if he was sure they were in his class this year, and he insisted.  "We can't leave them out!  They will be sad!"  I assured him no one would be left out, and emailed his teacher.

It turns out that those three boys are in the ACC class but not in the kindergarten class with Ben and two other boys from ACC.  They will be having a party with another special education class.  Ben was right.

This amazes me for two reasons.  First, Ben was able to realize that we were missing three of his classmates after listening to me rattle off a list of twenty kids.  Second, Ben was concerned for other kids' feelings.  He can barely express his own feelings on most occasions, but he recognized that those classmates would not receive cards and might feel left out and sad.  Not only that, but he did not want them to feel that way.  It's amazing.

Jonathan, Lucas, and Ryan will receive cards and suckers from Ben at their party.  Ben is happy.  I am amazed, thrilled, and so happy I'm teary.  I have an awesome boy who fills my heart with hope and happiness every day.

Happy Valentine's Day to all.

Melting

Sometimes, as Benjamin's mother, I feel as competent as the mother of a kid on the spectrum can be: I can predict what situations and variables of a situation will overstimulate him and cause a meltdown.  I can zero in on those issues, prevent and manage what I can, be prepared with mints and fidget toys and chewy tubes, explain in advance to Ben what might happen and how he should respond, place events and activities on our picture schedule and visual calendar. And it works out.   Ben handles the event successfully, he does not have a meltdown, and we are able to accomplish the task in public at hand.  I breathe a big sigh of relief and can practically feel my Super Mom cape draped around my shoulders as it unfurls in the wind. 

Its not easy to pull off such a feat  A  large portion of my daily life revolves around making preparations to ensure Ben sleeps, eats, has sufficient down time, has been prepared for situations and how he should respond, and is as prepared and able to deal with the world outside of our home as possible.  I live and breathe Asperger's syndrome; at least, it feels that way sometimes.  I make the preparations and do the thinking ahead and the worrying, and I brace myself for dealing with the fallout in case I am wrong

Because, believe me, sometimes I am wrong.  Sometimes I am dead wrong.

Sometimes, I find myself in the middle of Target while my child bites the handle bar of the shopping cart and screams bloody murder because there is not a single male cashier at that store.  And then I find myself peeling my screaming, flailing 49 pound child out of that shopping cart and stuffing him into my car and into his car seat restraints while 6 people stand around and stare at me.  All while I sweat and get a shooting pain beside my eye.  Not one of my finer moments, and ironically, it happened about 45 minutes after an appointment with a child psychiatrist who told me I am doing all the right things except putting him a a weighted compression vest in public situations that might cause distress.  I just ordered one, by the way.

Sure, sometimes, Ben does better than I expected.  And I rejoice on the rare occasions when this occurs.  Unfortunately, and more frequently, sometimes I miss something.  I forget something or make the mistake that Ben has moved  past an issue when he hasn't.  Sometimes, no matter how hard I try, I just can't control everything that needs to be controlled.  Sometimes, despite having a large variety of snacks, that kid won't eat anything when he needs to. Or he won't sleep.  Or a place is louder than I thought or a place is busy when I intentionally went at a time I thought it would not be.  Or there are no male cashiers or waiters.  Or something doesn't go as planned  And sometimes, just like any other kid, he is just irritable or in an uncooperative mood in general, which causes his symptoms to flare even if everything else does happen to go as planned. 

And then there is the meltdown.  There is shrieking, hitting of himself, clawing of his arms or face, kicking, biting, swiping at me or innocent bystanders (nothing makes me want to melt into the ground with shame more than when Ben swipes at someone else), throwing or shoving things off of surfaces.  Etcetera.  Yes, really, etcetera is necessary here.  He is inconsolable and it is almost impossible to get him to hear me explain something to him while he is melting.  He might melt because he is overwhelmed or physically in pain, because noises are too loud or people are too close or he doesn't understand a situation, or there is just a misunderstanding in general that sends his little stressed-out self over the edge.  Etcetera.  But I can't explain those misunderstandings or even remove him from the offensive stimuli because of that meltdown.  It stops us in our tracks and freezes us in a hellish moment that I desperately want to break free of but can't.

So it's not pretty.  It frequently involves me grabbing both hands to prevent swiping, or carrying him (while I still physically can) to prevent kicking, and maneuvering my shrieking, flailing, 49 pound six-year-old outside or to a restroom or to the car. While everyone stares at me, whispers about me, and/or offers unsolicited advice about parenting and laughs about my horrific failures as a mother. 

By the way, perfect strangers who laugh at me and my child or talk about us hatefully, just because Ben is screaming in my ear, it does not mean I can't hear you. And sometimes, secretly, I wish he would kick you. In the face. Or that I could.  ***

Just blogging honestly, people.

This is when I feel that Super Mom cape being ripped off my shoulders.  This is when I feel like a complete and utter failure as a mom and as a person in general.  And after I get Ben calmed down and back in the car, this is when I put my head on my steering wheel and sob.  Or climb into bed and struggle to get myself back out of it.  And I always feel guilty that Ben had a meltdown and screamed or swiped at people, that I felt angry at him for melting despite all my efforts to avoid it, and even that I deep down secretly wished he had kicked the woman who called him a spoiled little jerk in the face.  It's not Ben's fault he has this syndrome. And I suppose it's not that woman's fault she's ignorant and narrow.  I was too before I became a 7th grade teacher and had Ben, though I never would have called anyone's kid a name or laughed at them. 

I know it's not my fault. I know I'm a good mom. I know I'm doing the best I can.  I don't need that kind of reassurance.  That's not the problem. The problem is that THIS IS MY LIFE, and sometimes it makes me feel as helpless as Ben's Asperger's makes him feel.  Sometimes, it just doesn't matter how hard I try or how much I know.   Sometimes, I feel an overwhelming urge to avoid going out in public or taking Ben to new places out of fear of a meltdown. Sometimes, the fear of them is crippling.  And sometimes, I just have to vent.  I don't need reassurance, just a little grace and understanding from time to time.  Sometimes, I handle it gracefully and shrug it off, and that is always my goal, but sometimes I'm that woman crying on her steering wheel or peeling her kid out of the shopping cart and shoving him in the car.

I love my son.  He's sweet, smart, funny, helpful, and precious, and I wouldn't switch kids with anyone. I'm thankful I have him and I can't imagine not having him in my life as my child.  I love my son.

 Asperger's, on the other hand, SUCKS. 



***There are countless people who have not done such things. Many people, strangers and otherwise, have helped me.  Thank you to my family and friends who help me maneuver Ben or simply understand what's up, and thank you to the strangers who have retrieved my paper towels and returned them to my cart or slipped my phone or car keys back into my purse, thoughtfully, silently, and often without the appropriate thanks.