the Marathon

     When MG was in first grade we decided to seek some medical advice for her behaviors.  Before then we suspected she had some problems, but we felt that because she was so young perhaps she would "grow out of it" or maturity would take care of it.  Her kindergarten teacher said she seemed just like everybody else. When I expressed concern about her writing ability, the school counselor said that because MG could write her name, that was all we could expect at that point.
     Before first grade, we could accommodate her at home.  Her world was relatively small.  Once she went to full-day school, things began to change.  It was apparent that she was having trouble in the classroom and that she wasn't keeping up with her peers and there were some social problems.  We decided to consult a pediatrician who specialized in behavior and developmental problems.  I really liked him.  He was kind and patient.  His philosophy was that you treat a child's weaknesses or symptoms and accentuate her strengths; you don't need a diagnosis because it often causes more harm than good and hampers the child and many times the diagnosis is wrong.  This seemed right up my alley.  Did it really matter if her problems had a name? especially if it was something like autism that has no known cause and no clear way to treat it?
     We didn't stay with that pediatrician very long.  We liked his philosophy, but he wasn't equipped to carry it out.  (He lost MG's file several times, he wasn't available except on select days of the month for appointments, and he never gave us any kind of direction or treatment plan or resources).  He did say something, though, that has stayed with me.  During one of our first visits when I gave him our list of concerns and was wondering what we can do, he said, "You have to remember this is a marathon; not a sprint." What?  At the time, I didn't know what he was talking about.  I figured we'd go to the doctor, find out what the problem is, get some medication or therapies, and then my daughter would be fine. I didn't appreciate his message until later.

     First grade was three years ago.  Since then MG has tried several different medications, speech therapy, occupational therapy, social skills classes, memory programs, and special ed services, and home school.  Some things are better and some things are the same.  Growing up has helped her in many regards, but new challenges also arise.  We don't look for quick fixes or expect miracle cures.  Her progress is more gradual. We take it day by day.  Some days are hard and slow and it feels like we're going backwards.  Other days are smooth and easy.  It's more like...a marathon.   Sometimes I wonder if we have the endurance and stamina it takes to help see her through this marathon. Then I remember that my husband and I are both distance runners.

Comorbid

    My daughter has comorbid conditions.  According to Thesaurus.com, synonyms of the word morbid are horrifying, gloomy, nasty, sickly.  I guess comorbid means she’s doubly horrifying?  Actually, it means she has two or more simultaneous medical disorders.  I naively thought that when she was evaluated at the behavioral health clinic, we would receive a single diagnosis or explanation that would cover the scope of her aberrant behaviors.  Silly me!  Apparently you can have multiple mental disorders at once: comorbidity.  Autism explains why my daughter hasn’t developed at the same rate as the other kids her age, or why she doesn’t play like they do, or why she is sensitive to sounds or other stimuli, or why she has meltdowns when things don’t go her way.  It doesn’t explain why she can’t sit still, why she squirms and fidgets, why she can’t hold her thoughts, why she interrupts, why she leaves things unfinished, or why she is disorganized and messy.  That would be ADHD (Attention Deficit Hyperactivity Disorder).  The nighttime fears and general worries? Anxiety.  The extreme fear and anxiety of thunderstorms? Specific Phobia.  The poor handwriting? Dysgraphia.  I’m sure we could dig up a few more things if we wanted.  At least we got a lot for our $1000+ testing.
    If other parents told me a whole list of things that were wrong with their child, I would think they were nuts.  I would think they were hypochondriacs.  I would think, “Leave that child alone.  Let him be.  Let her be herself.”  Well, it’s funny how experience always changes your perspective.  It’s amazing how helpless and desperate you feel when your child can’t calm down and is holding her head and is hysterical because of the storm outside, or when you spend night after night for months sleeping on the floor in her room and she still can’t relax and sleep through the night, or when she won’t use the bathroom at the theater (or park or zoo or store or library) because the automatic flushing terrifies her and you have to go into the stall with her to cover up the sensor, or when you try to explain something to her and you have to redirect her multiple times and you wonder if she heard anything you said...
    When MG was diagnosed at 8 years old with this laundry list, I didn’t feel angry or sad or nuts.  I felt relieved and understood and grateful.  That list is our road map of understanding & helping our daughter and having compassion.

How Rude!

“Are you pregnant?” to the large man at the door.  “Why don’t you have a husband yet?” to the single woman in our neighborhood.  “Nobody likes you,” to the boy down the street.  “Why do you like to fight with my Dad?” to my husband’s boss.  “You need to go to church or you’ll go to hell,” to the kids in the carpool.  “You stink. You need to take a shower,” to the boy at school.  These are all things my daughter, MG, has unabashedly told other people, oblivious that these things might be hurtful or embarassing.  Talking too loud, lying down on the grocery store floor, answering the door naked, shouting out at church, lifting up her dress or shirt,  approaching strangers, indiscriminately sharing personal information are examples of my daughter’s apparent disregard for social norms and expectations.
    When MG was diagnosed with PDD-NOS, the psychologist said that autism can be partially described as a social learning disability.  I liked this explanation.  The body language, facial expressions, and tone of voice that the rest of us use to determine how to act or what to say are confusing or indecipherable to kids on the autism spectrum.  Many of us pick up on social cues within seconds and many social norms are intuitive, but these things need to be taught and practiced for kids on the spectrum and even then it’s still a struggle.  They have to work twice as hard to make sense of the myriad “social data” coming into their brains.
    There is an up side to this.  The same traits that make my daughter socially awkward make it easy for her to accept other people.  She might notice other people’s differences, but she doesn’t make judgments about them.  The down syndrome girl, the teenage boy, the girl in the wheelchair, the stoic old man, the four year old girl are all her friends and she unknowingly breaks social barriers to interact with them.  People who the rest of us might try to avoid or who we don't know how to approach, she will enthusiastically engage.  She’ll talk to anyone or play with anyone who is willing. She also seems immune from the anxiety that plagues so many of us regarding how we appear to others.  She is not paralyzed by thoughts about clothes, body image, hair, impressing others, or being the best.  Her authenticity is refreshing....Maybe we could all use a little social disability.

Labels

My daughter has autism.

There. I said it. More specifically she has Pervasive Developmental Disorder-Not Otherwise Specified or PDD-NOS.  It can also be called high functioning autism. I hate saying it; not because I hate autism nor because I think we’re too good for autism and not even because I hate that one of my children has a “disorder.”  I just hate labels.  I feel like they can be so confining, so limiting.  I worry that the label will hinder my daughter.  I worry that she will be defined as the girl with autism instead of the vibrant girl that she is.  I worry that she will be judged by her disabilities rather than her capabilities.  Admittedly, labels can serve a useful purpose.  One word or phrase can communicate a host of ideas and images and it can save you a lot of breath.  But that’s the danger. What do you think of when someone says autism?  Do you think of the anti-social boy who hardly speaks, prefers to be alone, memorizes lists of facts, and has aggressive outbursts?  That’s not my daughter, but they share the same label.  Fortunately, autism is also defined as a spectrum and there is room for lots of variety on a spectrum.

So how would I describe my daughter? 

The 10 year old girl who is active and talkative and curious. The girl who loves pink and animals and baby dolls. The girl who loves to play house over and over again.  The girl who is the oldest and tallest of four kids: two boys and two girls.  The girl who loves to read or should I say is obsessed with reading? The girl who is fascinated by volcanoes and afraid of thunderstorms.  The girl who can’t be bothered by trivial things like covering up after a bath, or combing her hair, or having matching clothes; she has better things to do.  The girl who is left-handed and has an awkward four fingered pencil grip and struggles with handwriting, yet loves to write. The girl who can’t sit still and has energy pouring out through her fingertips and toes.  The girl whose best friends include two, four-year old girls.  The girl who will talk to anybody about anything.  The girl who loves Justin Bieber. The girl who wants to pet your dog.  The girl who adores babies and will think of any way to be near one.  The girl who can fall off her bike, hit her head, and stand up, and say she’s fine. The girl who likes to play on the computer and likes to type. The girl who is fiercely independent.  The girl who wants her own way.  The girl who has no problem sitting down and screaming in the middle of the library. The girl who will say that she hates you in one moment and then can apologize and hug you the next. The girl who can’t tie her shoes but can make dinner and wash the dishes.  The girl who has braces and a retainer; she’ll tell you all about it.  The girl who struggles with math.  The girl who likes to hug. The girl who has trouble keeping her thoughts straight.  The girl who interrupts and insists on saying what’s on her mind.  The girl who has sensitive hearing and sleeps with white noise to drown out the “sounds.” The girl who runs outside in the snow with no shoes on and no coat.  The girl who likes to swim. The girl who likes to ride horses.  The girl who likes to go camping, as long as there are no thunderstorms.  The girl who gets frustrated and then yells or cries. The girl who likes to know where we’re going and what we’re doing.  The girl who has an amazing memory.  The girl who chews on erasers.  The girl who has difficulty following directions.  The girl who taught herself to ride a two wheel bike. The girl who has many best friends yet she is nobody’s best friend. The girl I worry about.  The girl I love. The girl who has autism. My daughter.