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

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.

Are you mad at me?

Poor little neglected blog.  It's not that I don't have topics to blog about.  I always have a lot to say about a lot of things in general, and that is true regarding my child as well.  Several drafts have been started and abandoned over the last few months, and I will get back to them and flesh them out, but the last six weeks or so of school sucked the life right out of me, y'all.  Now school is out for the summer, and I am in recovery (meaning still waaay tired), but I had a light bulb pop on today and it is worthy of exploration.

For the last few months, Ben has been asking a question very frequently: Are you mad at me?

At first, I was thrilled that my son was seeking to identify an emotion in others.  That's a big deal.  In some kids on the spectrum, it never happens.  We have books about emotions and iPad apps about emotions and the accompanying facial expressions, and we talk about it all the time.  I am constantly asking Ben: Are you scared?  Worried?  Nervous?  Happy?  Sad?  Angry?  Frustrated?  Excited?  And using his answers as both an assessment of how I need to adjust a situation to avoid a meltdown (as I am constantly on meltdown patrol) and also as an opportunity to teach him how to adjust and deal with his feelings in an appropriate way.

But the frequency of that question increased from asking, "Are you mad at me?" when he was being reprimanded to any time I got upset or frustrated (at traffic, breaking my fingernail off into the quick, a gallon jug of water busting all over the kitchen floor, etc.) and then he began asking others if they were mad at him as well.  I began to worry.  Had something happened to upset him at some point during his day, which is a myriad of different teachers, aids, therapists, daycare workers, etc?  Was Ben afraid of someone's anger for some reason?

One of my biggest fears is that something will happen to him--someone will hurt him or take advantage of his challenges regarding expressing himself--and he won't be able to tell us.  So far, I don't think this has actually happened, though we did have a scare last fall when he had some mysterious bruises on his arm.  Thank goodness for cameras in daycares, because we were able to determine that it was an accident.

Ben said he was not scared, that no one had been mad at him, but if he doesn't completely understand the question, his standard response is no, so I still worried.  Of course I did.  How could I not?

Then we began to notice that Ben always asks, "Are you mad at me?" when he has done something he knows is wrong or has just been told not to do.  Not just on that occasion-- others as well--but definitely when it arose.  Was it manipulation--an attempt to get out of trouble?  We know he is capable of that.  It's cute when he says, "I like chocolate!" when asks about what he would like to eat, but it throws a wrench into dinner negotiations, and I do believe it is meant to do so.  Was this question an attempt to get out of a consequence?  But still, sometimes he is genuinely worried when he asks it: his voice breaks or his lip wavers, and I know he is upset.

It's hard to maneuver your way through such vague, abstract issues with kids on the spectrum, so I just didn't know.  I began using it as a chance to explain about other emotions that might look like anger and to explain to him that yes, when he does what he is told not to do, I do get angry at him but that I also still love him, as I always love him, mad or not.  But then this morning, I had a light bulb--you know, when you aren't thinking about something you've been fretting over and suddenly the answer is crystal clear and you wonder why it didn't occur to you before.

Ben is having an extra occupational therapy appointment each week this summer, and while waiting for him this morning, I read part of House Rules by Jodi Picoult, who is one of my guilty pleasures.  It's a novel centered around a main character who is an 18-year-old boy (or man, I guess) with Asperger's Syndrome.  I am not far enough into the book to recommend it or not, but the mother character was explaining how the world is completely black or white for her son--something is either right or wrong, a rule either applies 100% of the time or not at all-- and she mentioned that he asked her, "Are you mad at me?"  Before she answered, she explained this:

"I think that's the attribute I miss seeing the most in my son: empathy.  He worries about hurting my feelings, or making me upset, but that's not the same as viscerally feeling someone's pain.  Over the years, he's learned empathy the way I might learn Greek--translating an image or situation in the clearinghouse of his mind and trying to attach the appropriate sentiment to it, but never really fluent in the language."

And that's when the light bulb flashed.  A hallmark of Autism and Asperger's is missing social cues in others.  Emotions are shown to others by way of these: a raised voice, facial expressions, looking drawn or tired, or that vein that always stuck out of my father's forehead to accompany his clenched jaw when I was being a teenaged terror.  Ben doesn't read those social cues fluently.  We have taught him about them, but he doesn't naturally pick up on them.  When he asks, it's because he doesn't know; because he can't distinguish the cues for my anger at him for standing on the dining room table for the fifth time in five minutes from the cues for my pain when I rip off part of a fingernail in the car door.

He asks because he doesn't know otherwise.  It's as simple as that, and this is good news.  It's a coping mechanism, and that is the way our kids with Autism and Asperger's learn to navigate the world with people who are neurotypical. 

Will he ever inherently understand and be able to pick up on someone's emotions without asking?  I don't know.  We will continue to work with him always, of course, and I can hope for it, but I am just as hopeful that he will continue to use that coping mechanism and that the world will try to understand why he needs to do so.

Awareness

April is Autism Awareness month, and I am ready.  I have my blue bulb on the porch, blue nail polish to apply to toes later today, blue clothes for tomorrow, a week's worth of obsessive Face Book posts about Autism under my belt, and the annual disturbing stats to read and stress over.  1 in 88 children will be diagnosed somewhere on the spectrum.  1 in 54 boys.  This is serious business, y'all, and it's not going away.

April is for spreading awareness to others, so I have decided to post some things I have become aware of since Ben's diagnosis in June 2010.  It's been a roller coaster, of course, but I am so much wiser for it. 

It's called a spectrum for a reason.  Every child on the spectrum is different.  Just because my kid does some things neuro-typical kids do, it doesn't mean he isn't on the spectrum.  Just because your kid does some things my kid does, it doesn't mean (necessarily) that he or she IS on the spectrum.  They are all so different.  They have different challenges, strengths, obsessions, sensitivities, fears, interests, talents, and personalities, just like you would find in any group of children.  The saying among parents of children on the spectrum is accurate: If you've met ONE child with Autism, then you have met ONE child with Autism.  This is why being involved in your child's education is incredibly important.  Your child will need things the other children don't need and vice versa.  This leads me to something else I have learned, and I learned it the hard way. 

Being an advocate for your child means (sometimes) standing up to educators.  I am an educator.  I am not perfect, but I do believe myself to be a good one and I know I work hard to be effective for all students.  When your child enters the school system, you want to believe that everyone will work hard to do the right thing for your child, so sometimes you make the assumption that this is happening.  I did all the right things.  I observed his first placement, I emailed the teacher regularly, attended the meet and greet and parent night, and went to all the meetings, but Ben's needs still were not being met and I didn't know that for over a year until an ARD meeting the teacher didn't even attend when everything hit the fan.

Even after that, I consented to continue this same placement with another teacher.  It became a three-hour   PPCD class for my child combined with a full-day pre-school class for school district employees.  I should have known right then that it would not be sufficient for my child.  Why were the non-special needs children being given MORE time and education than Ben?  It still does not make sense to me, and I advise avoiding such classrooms because Ben did not benefit from it and lost precious time and interventions.  The teachers and aids were overrun with students and my special needs child who had just been diagnosed (both privately and by the district) had IEP's in place that could not be adequately addressed.  I didn't know I could ask for another placement until I spoke with another employee of our district who had removed her Autistic child from a similar situation.  They don't tell you what you can ask for, so you need to ask for everything.  Don't be afraid or intimidated.  If you are unhappy with your child's educational services or placement, ask questions and research until you are.

And pay close attention at those ARD's (or IEP's, as they are called in some places).  Push for all of the therapy and interventions your child qualifies for and needs, and don't let them whittle down sessions or time.  Read the plan before you sign it.  Once, they mentioned that his speech therapy would be continued but did not say they wanted to cut it to twice a month; however, it was on the form the diagnostician filled out as she talked to me.  They were displaying it on a screen on the wall, and I just happened to look up and notice that she was changing the amount right before my eyes.  Had he met more than half of his speech goals?  No, she replied, but they were confident he was "on his way."  I stated that I would prefer to cut his speech therapy after he met goals and not before, and proceeded to lock eyes with her until she changed it back to weekly.  Just because they seem pleasant and accommodating, it doesn't mean they are doing what is best for your child.  Check up on everyone and everything.

Attitude adjustments.  After Ben's diagnosis, part of my process of dealing with it was to learn and reflect.  My mind has changed about many things, and, as I am a very opinionated person (just ask anyone), my opinions have developed, multiplied, and shifted as well.  Just like with so many other things, I find I ride the fence on this one.  I am NOT glad my child has Autism.  I think he is a blessing, but I think it is NOT.  I am far too realistic to spew a bunch of rainbows and glitter about Autism, but I also believe that it does not devalue him or make him any less capable or wonderful than any other child. I avoid sites and groups that glibly assert we should feel fortunate that our children were "blessed" with Autism because it makes them highly intelligent (though I don't believe children are intelligent because they have Autism) and unique.  Gag me with a fork.  This syndrome is a challenge, an obstacle to overcome; it makes our lives more difficult and it isolates my son from the rest of the world.  It is not a blessing, and I wouldn't wish it on anyone.

I love my child more than anything with that to the ends of the Earth mommy love that we don't know exists until we become parents.  But I hate Aspergers, even though it is a part of that same child I love so much.  It's a difficult edge to dance along.  I don't want to change him because I love him and think he is wonderful.  But I wish he was not on the spectrum.  I wish Autism did not exist.  It's an emotional roller coaster that caught me by surprise.

Seek support.  No matter how strong you are, this journey is easier with support.  Fortunately, I have a very supportive family and Ben's dad is in his life.  His dad takes him to school across town so that he doesn't have to ride the bus and have an additional transition in his day, and he takes him to private occupational therapy once a week while I am at work.  We have also adjusted his parenting time so that he picks Ben up from school three times a week so that Ben is not in daycare as much.

My family has been immeasurably supportive emotionally, financially, and physically.  My parents have helped with therapy and expenses, they keep him so that I get to have personal time on occasion, they pitch in when he is sick, and my extended family has been very sweet, understanding, and patient with Ben.  And they all love him, no matter what.

Ben has an awesome occupational therapist and a fabulous PPCD teacher.  We have a valuable parent in-home trainer who has greatly helped us, and I am surrounded by intelligent educational professionals who take the time to give me advice and point me in the right direction.

I am fortunate to have this support and I know it.  Not everyone has that, and I know this as well.  However, I don't know what I would do without the additional support of a group I am in on Face Book.  I haven't met these women in person, but through this group, I know them all to be strong, intelligent women who have been and are where I am and understand the emotions, frustrations, challenges, fears, and joys of parenting a child on the spectrum.  Despite the support system I have here, I am still the one in the trenches who lives with it 24/7 and who does the bulk of the worrying and the work.  I am alone with the tantrums and sleepless nights.  I am the solver of the problems, the maker of appointments, the finder of resources, and  the asker of many questions until issues are resolved.  Unless someone has been in these same trenches, he or she does not completely understand.  It's just not possible.

If you are a parent or caretaker of a child with Autism, find people who have been in the trenches.  Reach out in your community, online, to me, anywhere you can.  I cannot fully explain the difference this group of ladies makes in my emotional health and ability to be a good parent and sane person.  I can go to them to vent any frustration.  They never undermine or dismiss an issue or problem, and they have a wide range of experiences with their own children to help guide me in the right directions.  I can go there to celebrate any success, no matter how trivial it might seem to the parents of neuro-typical children and they always celebrate with me.  It also gives me a place to be supportive and feel helpful, which is valuable in itself. 

Autism is not just an issue for the child that has it or the family of that child.  It affects everyone in the community, and with the new statistics that are out, every community will be touched by it.  Be aware of people who are different but valuable, in their own world but a part of yours as well, and who may not speak but can be hurt by your words and exclusions.  Embrace them, and teach your children to embrace them.  It will mean more to them than you can imagine. 

Six Years

Dear Benjamin,

Tomorrow, you will turn six years old!  SIX!  Sometimes, I can't remember what life was like without you--it feels like you've always been my first thought and that you've always filled my heart.  Other times, it seems impossible that it has already been six whole years since you officially entered the world and I fell completely in love with my tiny boy who spent his first 23 days in NICU.  At four pounds eleven ounces, you really were a tiny baby.  You would never know it now.  You are tall, active, busy, and run all over and climb everything, and you have definitely overcome those physical challenges you had when you began your life.

This has been a big year for you.  You are talking more and more and you say the funniest things.  You love to tease people and make us all laugh. You are learning how to better negotiate your world and deal with changes and transitions.  You have dealt with quite a few lately--new daycare, new routine, and new schedule with your daddy-- and you handled them all like a champ.  I couldn't have asked for you to do a better job.  Your fine motor skills are improving; you can do lots of things you couldn't do this time last year.  And (drum roll, please) you are potty trained!  That was a big project for you for quite a while, but you did it!  And you are being such a big boy about it!  Plus, PLUS, you got your first official haircut at a barbershop with clippers of all things!  You lost your two bottom front teeth a couple of months ago and are working on learning how to ride your bike.  We are also working on reading, and you know your letters and their sounds and are beginning to identify a few words here and there.  You are not terribly interested in it as you would prefer to have the book read to you or to run around and play, but we are working on it.  Your teacher, Mrs. S, thinks you have a photographic memory and that you are very smart.  We agree.  The problem is you don't always feel like showing us what you know, but we are working on that, too.

You still love music, musical instruments, books, and animals, but your interests have broadened some this year.  You enjoy LEGOS, firetrucks, pirates, and police cars.  You chose Cars 2 as your party theme this year, and Tow Mater is your favorite.  We had a lovely moment this summer while waiting for your therapy appointment and you decided to quote what is probably the most inappropriate line from the original Cars movie.  You loudly exclaimed, "Help! I'm in hillbilly hell!"  That wasn't a good time, but it was funny in retrospect. 

We still have some challenges.  Your fine motor skills, though much improved, are still behind.  You still get overwhelmed sometimes and just need some space or to be held in a dark, quiet place, but those episodes are getting fewer and farther between.  You need lots of help with things, but we are making sure you get the help you need and I know you are going to meet your goals.

And then there was the blue Play-Doh we had to have surgically removed from your ear.  In the hospital.  After they put you under.  That was not a good time either.

You definitely do things in your own time.  We struggle and struggle with something for what seems like forever, but eventually you just decide you are going to do it and you do it well.  That's okay, though.  We'll take as much time as you need.  You have a sweet little soul--affectionate, helpful, loving, funny--and you are my greatest joy.  I am so thankful I have had you in my life to love and learn from for the past six years.  I can't wait to see what this next one will bring.

I love you, Benjamin Bear.  Thank you for being my precious boy.

Love always from your biggest fan,
Mommy

Haircut Success!

Many posts ago, I mentioned that Ben has always been terrified of haircuts.  He is horribly scared of them, and due to his sensory issues, they overwhelm him.  Since he got his first haircut at about the age of two, we have struggled with this.  I let him go as long as possible in between cuts, but his hair is very straight and when it was long enough to hang in his eyes, I would call my sweet friend, Kim, who has an incredible amount of patience and serenity, and I would hold him down while she cut his hair and he screamed bloody murder. 

It was awful every single time.  She always assured me that, eventually, he would outgrow this and handle it better, but I was beginning to think she was wrong and that he was just going to have hair down to his toes if she ever quit cutting it for us.  We tried a social story, a wonderful book called "Bippity Bop Barbershop" by Natasha Anastasia Tarpley, and bribery.  NOTHING worked.

This morning, however, a small miracle occurred.  My dad and brother (Poppy and Uncle Nathan) have been talking up their barber and going to the barbershop with them like a big boy for a few weeks now.  The thought was to take him and let him watch them get their haircut and then see if he would get one.  I put the haircut on his picture schedule, packed "Bippity Bop Barbershop" and the Ipad for distraction, and they went on their way.

I was pretty sure it would be a big disaster but was hopeful at the same time, and GUESS WHAT?  Ben got a haircut!  He wore the cape, sat in the chair, held still, and let the barber even use clippers, which in itself is HUGE!  He did not scream and no one had to hold him down! 

I am so proud of him and relieved, I can't even explain it.  One of my biggest jobs is to help him navigate the world, which is very different from helping a kid who is not on the spectrum navigate the world.  Unless you have done it, you don't understand.  All those things other parents take for granted are issues for us.  That's just how it is.  When he has a success like this, though, there is light at the end of that tunnel.  There is hope that eventually he will be able to handle other things better too, and that he will grow up and be able to take care of himself. 

The doctors tell parents of children with Asperger's that we are the lucky ones because our children will "probably" grow up to go to college, get married, and have a job like everybody else but will just need extra help along the way.  Sometimes, it's impossible to see that.  When your child can't function or handle a normal part of everyday life like a haircut, you don't believe them or agree with them and you worry like you would not believe.  This little event of my almost six-year-old boy getting a haircut at the barbershop means so much more than it does for other kids his age.  So much more.

Before:

And that does not even show how long it was.  I tried to get a "before" pic with it in a ponytail on top of his head, but he wouldn't go for that.

After:

Going With the Flow

If you know kids on the spectrum, you know they don't do this very well.  Ben certainly does not, for the most part.  He resists "the flow", rebels against it, rages at it, and melts down any time "the flow" doesn't go the way he thinks it should or envisioned it would.  Transitions are hard, and changes and new routines are harder.  Ben is a great kid, but flexible and well-adjusted are not high on his list of many attributes.

Last week brought many changes and new routines for Ben.  We began school again after a long Christmas break of sleeping late, playing, fun outings and a whole lot of nothin' while we wore pajamas all day.  His school and therapy routines aren't different but they did resume, and he has really struggled with that in the past.  By struggled, I mean screamed, cried, threw himself on the floor, refused to get dressed, kicked, hit himself, hit others and kicked his shoes off 20 times before we even left the house.  And it wasn't pretty at school or daycare, either.

In addition to returning to school, Ben's dad and I created a new custody/visitation schedule which we also began this last week.  Ben lives with me full-time, though his dad and I have joint custody.  The reasons behind that are complicated and personal, but we try to keep a schedule that gives him as much meaningful time with his dad as possible.  As our lives changed and the distance between us and our relationship grew, so did some of the tension between us.  We have to be able to get along for Ben, but that was becoming increasingly more difficult.  We worked together to change Ben's schedule so that they have the same amount of time together but a lot of it is when I am at work, so that the time they share is more meaningful and less tense, among other reasons.  The last time this changed, Ben had a very difficult time with it.  He didn't understand why he couldn't see Daddy when he was used to, or whenever he wanted, for that matter, and it was very, very hard, for lack of a better word.  It was wrenching to watch him and I felt helpless as he was really too little to explain it to adequately.  These new changes are positive ones, in my opinion, but still potentially difficult for Ben.

On top of all that, he began a new daycare.  Yes, all at the same time, in the same week.  It's a wonderful new daycare: sparkling clean, designed to accommodate children with special needs as well as those without, roomy, calm, includes sensory integration tools in each classroom, has teachers with BS's in early childhood ed, and charges a part-time rate if your child is there for less than four hours a day (which was one of the problems with the old one--$95 for 6-7 hours of care a week for an almost 6-year-old is beyond ridiculous).  And the new daycare picks him up from school so that he doesn't have to ride the school bus for a longer amount of time.  It's perfect.  But it's N-E-W.  New means scary.  New means meltdown waiting to happen.

Ben and I visited it together the week before.  He was nervous, even though he knew he wasn't staying and would be leaving with me, and swayed from foot to foot while gripping my hand for a few minutes, but he liked it.  He said hello to his new teachers and new class, shook the teacher's hand, and expressed some excitement over the awesome toys in the gym.  His teacher explained a few things to him, and the receptionist explained who would pick him up and showed him the T-shirt the lady would be wearing.  They allowed me to take pics of the van and sign in front of the building for his picture schedule, and he left calmly and seemed only slightly anxious about it.

At home, I adjusted the picture schedule and the Mommy/Daddy calendar we keep that shows who he will see each morning and each evening, we talked about the changes, read books about school and Mommy and Daddy leaving and coming back, and everything else I could think of to prepare him for it all.  I have to tell you, I was scared.  I was terrified he would melt down and be miserable, particularly at a new daycare where he wouldn't know anyone.  Every time we went back to daycare at his former center, he melted down but they had known him and cared for him since he was an infant.  They were able to figure out how to help him simply because they knew him.  The new center is better equipped and has better educated staff, but they didn't know Benjamin, and that makes a huge difference with a kid.  I was afraid he would be miserable and feel alone and scared, and I wasn't sure what he might do under such stress.  By Tuesday (his first day at the new daycare center), I was a wreck.

To my great relief and surprise, it went amazingly well.  His teacher reported all good days at school, the new daycare said he did well in the van and in his classroom, and he actually said he liked it (which is a big deal in itself).  He also has yet to freak out over the change in his schedule with his daddy.  We had one melt-down Friday morning over a shirt--he would pick one out, throw a fit about wearing it, choose another, throw a fit, etc.--but after he left the house, he was fine.  One freak-out at the end of a week full of stressful changes is definitely improvement, and I am so excited about it I can't even begin to tell you.

Helping Ben negotiate the ups and downs of life is a long, hard road sometimes.  Changes have to happen and that's true for everyone's life, but these things are harder on kids like Ben than most other people.  He is growing up and dealing with things a bit better, and he certainly did a good job of "going with the flow" this week.  I'm super proud of him and very hopeful that he will continue to adapt and adjust a little more easily.

'Tis the Season...

...for growth!

As parents, we all measure growth in our children.  Physical growth, of course, but also emotional and educational growth.  I'm a teacher, which means I am in the business of constantly analyzing educational growth, and of course I examine my own child with the same analytical eye.  The difference between me and other parents is that a success for Ben in my mind is a daily expectation for other kids; events that are a huge accomplishment for Ben are not a big deal for most kids and are not reason for celebration.

One of the reasons I began this blog was to have a place to celebrate Ben-- his uniqueness, his strengths, and his growth.  So here goes:

Ben's fine motor skills are severely delayed.  At age 4&1/2, his were assessed at 18 months.  That was hard to swallow.  We work on fine motor skills.  We string the beads and play with the blocks and the Play-Doh and color with the triangular crayons just like we are supposed to, and we started doing that right when we were supposed to, but his fine motor skills are still delayed.  It's one of the areas Autism shows up the most in my child.  At 5&1/2, he still cannot write his name unassisted.  BUT!  This year, he was able to place all of the tiny candy pieces on the cookies and he placed all of the candy on the roof and walk of the gingerbread house and all of the little dots on the gingerbread man and tree!  Last year, the cookies he decorated looked nothing like that.  I so should have taken pics last year for before and after, but trust me, the difference is huge!

Do you see that glorious mess?!  Musical instruments, pirates, firemen and fire truck, dinosaurs, LEGOs, etc?  Last year, Ben obsessed over his musical instrument toys.  And that's all.  That's all he touched for days.  This year, less than 24 hours after opening his presents, he has played with almost every single thing he received, at least for a few minutes.

In retrospect, one of the early signs of Ben's Autism was his tendency to obsess.  Lights and fans had to be on all the time.  He began pretending to cook at age 2; everything became a spoon and pan and all he wanted to play with were spoons and pans.  At age 3, this obsession changed to musical instruments.  Everything became a musical instrument, he wanted to spend hours in front of You Tube watching people play musical instruments, and all he wanted to play with were musical instrument toys.  Occasionally, he would play with a dinosaur or a car, but after a few minutes it would become a "dinosaur flute" or "car harmonica".  He began speaking at 3&1/2 and a few months after he spoke his first (retained) words, he could name over a dozen musical instruments.  Now he can name them all, even lutes and balalaikas and other things I did not know existed until Ben became obsessed with them.

A few months ago, an assessment by his private OT showed this might be changing.  She reported that he no longer reverts to pretending to play an instrument in order to avoid therapy.  We began noticing that he played with LEGOs and other things as much as his instrument toys.  And now I am spending my morning joyfully watching him move from toy to toy: fire truck to pirates to drums to Legos to binoculars to pretending to be a guitar-playing pirate.

I do not have a picture to accompany the next benchmark, but it might just be the most important one.  Ben made it through all of Christmas day--Santa gifts, Mommy gifts, gifts at my parents' house with grandparents and aunt and uncle, and the family gathering at my aunt's house with only ONE instance of a mini-meltdown (wanting to be a pirate instead of opening the rest of his gifts) and one instance of isolating (in the back entryway about 8 feet from the rest of us)!  It may not seem like a big deal, but it is HUGE!

Another early sign of Autism that only registers as such in hind-sight is his need to isolate himself from noise, crowds, and over-stimulation.  On his 2nd birthday, Ben freaked out.  He cried, screamed, went into his room, and refused to be a part of the party.  He did not open his gifts.  He did not blow out his candles or eat his cake.  He sat in the recliner with his dad reading books until everyone left.  Then he was fine.  I blamed it on not having taken a nap and on being two in general, but about 6 months later at my dad's 60th birthday party, he went as far back into my parents' house as he could and stayed there by himself.  He would have nothing to do with the party or the people, even family members he knew well.  He just wanted to play with a pan and a spoon by himself, completely away from the crowd and the noise, and attempting to draw him out led to a colossal meltdown. 

Yesterday, I watched him negotiate his day and the commotion and disruption to his routine mostly with ease and was so relieved there are no words to describe it.  He occasionally sought pressure to help him deal with sensory overload, but other than the one example of resisting opening packages, he handled it all like a champ.  I have every hope and reason to believe that he will continue to grow and learn to navigate the world, and I am so happy for him that he was able to enjoy the holiday instead of hide from it.

I hope you all had a wonderful holiday celebrating everything you celebrate, and I wish everyone a peaceful new year full of happiness and growth!

You Can Do Anything

A few weeks ago, a coworker sent us all the link to a short film, The Butterfly Circus.  It's one of the most inspirational things I have ever seen.  She showed it to her students on one of our "college days", I suppose to inspire them to do the hard work that earning a college education requires.  And I can totally see that.  One of the most important beliefs to have as a teacher is that your students can overcome any challenge and "do anything".  I believe it.  I have seen it.  And I know I will see it again.

Of course, my precious boy is always on my mind and in the center of my heart, and he was the first person I thought of when I watched it.  I have always been focused on the idea that Autism should not and will not stand in Ben's way.  I am determined not to let it limit him and his potential to do anything he wants.  I know that he can and I believe that he will.

The film is 20 minutes long, but it is completely worth your 20 minutes.  I promise.

The Butterfly Circus

Unsolicited Advice

Something happened a few weeks ago that I fully intended to post about but didn't have the time to do so, which is the story of my life lately.  It has sat there in my brain, kind of hanging out for awhile, and every time I focus on it and really think about it for a moment, I get worked up about it again so here I am.  That's partly because an event like this is very much a part of the experience of raising a child on the spectrum, a child with any kind of special needs, and quite possibly any child at all.  It's also partly because it's an example of how raising Ben has changed me as a person in many fundamental ways. 

A few Saturdays ago, Ben and I went to the local super center to do our grocery shopping.  Such an errand creates a medium-to-high level of anxiety for me because I don't know how Ben is going to handle the noise, crowd, and being stuck in a cart for up to an hour.  I place it on the picture schedule so he will know ahead of time, discuss expectations and what "big boy words" to use if the store is too noisy or if he needs something, and I pack fidget toys, a juice box, snack, and mints in my purse to make sure he has the distractions and comforts he might need.  It's never just a matter of getting in the car and going, as it always requires preparation.  Sometimes he handles it perfectly well, sometimes he handles it mostly well with a few outbursts, and occasionally he screams the whole time and punctuates that screaming with throwing things.  There is no way to predict the latter and even though I always try to head it off, sometimes there is no way to do that either.

On this particular Saturday, he did mostly well until we were in a particularly crowded aisle of chatty people, and I swear someone cranked the Christmas music up a few notches.  Ben lost it.  "It's too loud! he screamed, while hitting the side of his head with his hand and simultaneously kicking off his shoes.  He swiped at me, threw a roll of paper towels out of my cart, and howled.  I covered his ears with my hands and began telling him that it would be okay and we could put the hood up on his jacket to help, when some lady I have never seen before in my life wearing a horrendous cat sweatshirt stepped up to me with a condescending smile on her face, and said, "Your son is throwing a tantrum."  I just stood there while my jaw dropped.  My child was throwing a tantrum?  No kidding, lady!  She continued, "This is what happens when we try to be our child's friend instead of his parent.  I recommend strict consequences for behavior like this."  And then she took a step back and looked at me expectantly.

I don't know what the hell she was expecting, but I'm sure it wasn't what was going through my mind because first of all, did she really think I was not aware that my child was throwing a fit?  Did she really think I needed that pointed out to me while his shoes were in the floor and he was screaming?  And second of all, who the hell asked her?  It's not like he is the first child to ever throw a fit in Wal-Mart, and the fact that he did indeed throw a tantrum does not mean he does not have consequences for his behavior.  Having sensory integration deficits is not a chosen behavior, and that's what I suppose I should have told her because she was clearly clueless that he has Autism and probably has no idea what that is, but my brain was so full of profanity in that moment that my filter (which isn't a very good one) was working double time to control my mouth, and instead all I could do was glare at her while retrieving Ben's shoes.  Thankfully, some other lady quietly put my paper towels back in my cart (if I had picked them up myself, I probably would have thrown them at the cat shirt lady), so I pulled Ben's hood up over his head and pushed my cart out of that aisle as quickly as possible.

This is not the first time such a thing has happened.  Ben and I have been stared at and whispered about (and even laughed at) at restaurants, parks, Mommy and Me gymnastics, etc, but never had I encountered someone who would dare tell me I was doing it wrong and that they knew better about my own child than I did.  Part of me regrets not telling her off and part of me wishes I had been able to stop and educate her, not only about Autism and my child but also about that judgemental cloud she lives under that caused her to say what she said and make a rough moment even worse, for all the good it might have done.  When I say that Ben changed me, I mostly mean he changed this.  Not that I was ever exactly the cat shirt lady, because I never would have told someone how to parent their child, but I would have thought it.  I would have felt critical and I would have thought, "Parents don't discipline their children."

I am no where near perfect and never will be, but raising Ben has taught me that there is always another side to things; that living under a critical cloud blurs my own life.  I have had to learn to look at my child in a more positive light and to believe that he can overcome his obstacles to do whatever he wants and be anything he is willing to work toward.  I am able to see my students in a different light as well, with that same hope for possibility.  There is more sunshine in my life now, and I am a far more positive person than I was.  As frustrated as I get with Autism sometimes, I needed Ben.  I needed the change.  

In response to the rude cat shirt lady, a friend suggested I get Autism Awareness cards to hand out in similar situations.  It's a good plan and a good reaction, much more acceptable than throwing paper towels or unleashing unfiltered profanity.  I browsed them online and didn't find any I completely liked, so I borrowed bits of a few and added my own line.  Below is what I came up with.  Feel free to use the wording if you have a need:

My son has Autism                                         

When a person with Autism feels overwhelmed

by his sensory integration deficits, he may behave

in an unpredictable manner.  His current

behavior is a reflection neither of his intelligence

and worth, nor of my parenting.  Your patience

would be appreciated.  For more information,

please go to www.autismspeaks.org

Wherein I Cram a Week Into One Post

Whew!  This has been a big, busy week and I have been sick for most of it with the worst UTI ever.  I am thankful to be feeling better and for all the help I got from so many people, and I am thoroughly dreading tomorrow at work.  I already have a list of things to do tomorrow as long as my leg and I haven't even seen my desk yet.  Boooo.

In Ben news, he had an awesome Halloween and was healthy enough to celebrate it.  Last Sunday, we carved pumpkins and he very happily scooped the guts out of the pumpkins.  This is fantastic sensory news, as it didn't seem to bother him at all.  He also seemed very happy that Mommy and Daddy were both involved, and it was a fun activity.  He chose a "ghosty face" for the white pumpkin and a "happy jack'o lantern face" for our big orange one.

On the day of Halloween, he happily donned his fireman outfit and was very excited to trick-or-treat.  We went to some family members' homes first and then we did two blocks at home.  There weren't very many porch lights on, but the people who did participate were sweet and generous.  Ben had a blast, and he nicely said "Trick or treat!" and "thank you" at each house, though sometimes in the wrong order.  Oh well.  He was the cutest fireman ever and got lots of smiles and compliments.  He had a bit of anxiety in places when there wasn't a porch light on for a few houses or when he wanted to carry a big sharp stick and we wouldn't let him for safety reasons.  He also had a bit of a meltdown when we decided to go back to the house because it was getting dark, but overall he did very well.

Then Tuesday rolled around and we headed to a surgical hospital at 7 a.m. so his E.N.T. could remove the blue Play-Doh from his left ear.  I know.  Yes, he had Play-Doh in his ear.  I think it just must have been on his finger and he scratched his ear or something, but it was close to the eardrum and couldn't be tweezed out so it had to be removed while he was under.  Too bad he couldn't just sneeze it out like he did the LEGO he stuck in his nose, because while this procedure was short and relatively painless, it was expensive.  The surgical hospital was great with Ben, though, and he only had a few issues.  He was a doll until it was time to put on the little gown, and then the screaming began.  They solved that by letting him wrap up in a blanket with his undies and socks on instead, and that helped until a female nurse asked him to get in the bed so she could wheel him back for the procedure.  He began screaming and crying that he wanted "a man to do it" and they quickly found a very nice male nurse who carried him back without incident.  I don't know why he does that sometimes; maybe because he gets it set in his mind that it will be a man, and he doesn't change his idea about things very easily.  At any rate, the procedure went well, the Play-Doh is out, and other than being a bit drowsy and dizzy from the gas, he was fine.

Fast forward to yesterday, and I discovered that he lost his first tooth at some point this week.  He was digging in the back of his mouth and I felt around to see if he was getting a molar or something, when I saw that a lower front baby tooth was gone.  Gone!  There is just a little dark spot on the gum where it was and a permanent tooth is pushing up behind it.  I was heart broken.  I had a special book to read with him for this occasion (Bear's Loose Tooth by Karma Wilson), a special Tooth Fairy box Noni got him, and had big plans to celebrate it and be the Tooth Fairy.  I also felt like I had messed up.  How did my baby, my number one most important person, lose his first tooth and I had no idea?  I know I was sick last week, but still, I am a bit upset about it.

Fortunately, he was not traumatized by it as I had feared he would be and I don't think he even noticed.  I showed him his new tooth in the mirror and showed him that the one beside it is loose now too, but he really couldn't have cared less until we read the book and dug out the box.  Now he is super excited and wants the other one to fall out right now!  Hopefully, we'll catch this one. It was a busy week, and I am proud of what a big boy he was at many points of it.  He was also very sweet to me while I was sick, and I just couldn't ask for a better boy.  I really wouldn't change a thing.