Understanding

A few years ago, I confided in a friend about some of the struggles we were having with MG and about my fears to be more open about it.  Her response gave me the courage and confidence (over time) that others would be kind and empathetic.  She said, "I agree with you that SOME people will hear a diagnosis and label MG, but I also think there are a lot of people who will use the diagnosis to show more patience/understanding toward her."

With that hope, we started sharing our experiences with family and friends and recently, I made this slide show to help MG's peers understand her.  She belongs to a church activity group for girls her age and I had noticed some of MG's behaviors were isolating her from the other girls.  A few of them were responding with aversion and subtle teasing.  Understandably, some kids don't know how to react to the unusual behaviors or abnormal responses they might see or hear. So I shared this with them to educate them. I think it was well received.  Our decision to be open and frank, has led to more acceptance and less judgement.  I notice others go out of their way to talk to MG and put an arm around her or listen to her.  Her peers seem more knowing and accepting.

It seems my friend was right.

Education, Part 1

School is in full swing now. For two of my children that means actually going to a school with other kids, listening to a teacher, playing at recess, and doing homework. For MG it means staying at home and attending an online school.

I hadn't intended that she stay at home. I thought she would go to traditional school just like I did and most everyone else I knew. Homeschooling wasn't something I was interested in doing. I knew a few homeschooling families and I always thought, "I could never do that. I don't have the patience for that. I'm not organized enough. I would go crazy. Homeschooling takes a special type of person." I did admire homeschooling families, but I just figured they had something I didn't.

Well, fast forward a few years, and we are in our second year of homeschool. To be fair, it's not quite traditional homeschool. It's a public online school, but it's at home. The curriculum is provided by the online school and I teach the material to my daughter and help her progress and move along. We also have a certified teacher that consults with us every month and is available when we have questions or need help. MG even receives speech therapy through a webcam and headset. She also has a special ed teacher that helps us set goals and monitors MG's progress. We're not completely on our own, but the day to day learning is up to us.

So how did we get to this point? It's not a great story, because homeschooling was the culmination of several frustrating years of public school and not feeling like my daughter was receiving the help she needed.

Last year I wrote a letter to a member of the special ed department at the school district and listed some of my reasons for keeping my daughter home. Here is part of what I sent:

1) I don't think funding, training, and personnel are sufficient to provide the kind of education that the law claims to be able to provide for special ed kids. I think teachers are overwhelmed and unable to meet the demands of these students' education. One reason I took my child out of traditional school was because I grew weary of the unmet promises and expectations.

2) As an involved parent, I want to be part of the education of my children and be part of the decision making process. I was told that the parent is a member of the "team." However, whenever I tried to stay informed or ask questions or facilitate meetings (especially with the general ed teacher), I felt like I was interfering, wasting time, or that I was causing problems.

3) Another reason I decided to keep my daughter home was because of the transition from year to year. By the end of second grade, the teacher had implemented some nice accommodations for my daughter, but when she went to 3rd grade those gains were lost because the teacher refused to use them. I think by the time a teacher gets accustomed to the needs of a special ed student, a lot of the year has gone by and time is wasted.

4) I think the many regulations and rules make the special ed process very slow and cumbersome. I don't think more rules or even more funding will help the current system in place. I think a more flexible and creative system for special ed kids is needed. Many of these kids are on their own track and I think it's frustrating that the goal of the system is to try to make them conform and fit into a model that may not be ideal for them.

Not included in that letter was perhaps the more principal reason for keeping her home: she is my daughter. Although teachers might love what they do and care for their students and have education training, it is still their job. They have their own lives and families to worry about and support. There is no one as vested in my daughter as my husband and I. There's no one that wants to see her succeed and progress as we do. At the end of the day, we are responsible for her, even her education if needs be.

(as a side note, there are a few charter or private school options, but they are not available or feasible for us right now)

Designed Chaos

     Throughout our autism journey we've heard several times from kind people, "God gave you your daughter because you are strong or you can handle it or you are special or He trusts you."  I recognize the virtue and support of these comments and being a person of Faith I agree in God's plan and purposes. However, it very well may be the fact that our daughter has autism because of my husband and me.  I don't say this in a guilt stricken or self deprecating way.  Autism probably has a genetic component and we are all combinations of the genes from our parents for better or worse.  Having children is a game of chance with abnormalities being a real possibility.  In the future we may be able to manipulate the genes or "fix" some of these things, but at least for autism this isn't available right now.

     There also may be environmental factors involved with autism. Did I do something while I was pregnant to cause this?  Did I get sick with a virus?  Did I breathe in too many chemicals at work? Is there too much pollution in the air where I live?  Did the preservatives and toxins in my food cause this?  Did her pre-term birth at 35 weeks have something to do with it?  Maybe.  There are many areas of research going on right now pointing to different possibilities.   http://www.autismspeaks.org/science

          I'm not sure that God made my daughter autistic.  I do think that he allows the disorder, chaos, randomness, pains, hardships, and trials of life to teach us and refine us.  These things help us to look outside ourselves for help and understanding and to be grateful for the good things in life. I wasn't expecting to have a child with developmental problems nor can I say that we were initially well equipped to handle it.  Some of the behaviors surrounding autism are a struggle for her and us.  There are times when my own weaknesses and ignorance are probably a setback for my daughter.  But we're learning; she's learning.  Autism has given us a new perspective.  We are different, better people as a result.

     So to God I say, "Thank you.  Thank you for the opportunities for growth and expansion.  Thank you for our daughter.  Bless her with peace and happiness.  Grant us the insight & education to help her.  Make us fit for the job.  Enlarge our hearts.  Increase our patience.  Strengthen us.  Lead us."

Can't you see me?

     There's a touching scene in a movie called The Other Sister that I watched before I had kids.  That scene is recalled to my mind often now as I try to balance teaching my children what I think they need vs. trying to preserve their own individuality and independence.  This is especially true with my daughter MG.  In the movie, Carla, a daughter with some unspecified mental and social "handicaps" confronts her mother about seeing her for who she is and basically accepting her and what she wants.  It was very moving and thought provoking.  She yells at her mother (at her sister's reception), "I'm just me, Mom!  Can't you see me?  You never look at me!"

    Sometimes I wonder if while doing all of the many things for my daughter to help her get along in this world, if I'm really seeing who she is?  I often frustrate her with my requests to do things that are "normal" or "socially acceptable" which she would care not to do or doesn't think about.  Please don't talk with your mouth full of food.  Please wipe your hands on a napkin.  Please lower your voice.  Please put on a clean pair of pants.  Please sit still.  Please don't use that tone of voice.  Please stop asking so many questions.  Please don't interrupt. Please pay attention.  Please give those people some space.  Please don't talk to strangers.  Please keep those thoughts to yourself, and on and on and on.  Do I see her or do I see the food stuck in her teeth?  Do I see her or do I see the smudges on her clothes? Do I see her or do I see the unkempt hair?  Do I see her or do I see the missing sock?  Do I see her or do I see the person I want her to be?

     In MG's diagnostic report from the psychologist there is a section with recommendations.  One of these says, 

"MG is likely to benefit from hearing, on average, 8 praise statements for each reprimand she hears. The general recommendation for typically-developing children is 4 praise statements for every single negative statement about their behavior.  To account for the number of negative statements children with learning disabilities hear, it is desirable for adults in positions of authority to make every effort to increase the number of positive statements beyond the number from which typically-developing children are likely to benefit."

When I read that, I realized that I had a whole lot of praising to catch up on and I still do.  Sometimes in my over-zealous attempts to correct my daughter,  I actually might be overlooking her heart and soul.  The words of one of my religious leaders serve as a prudent reminder for me:  "Never let a problem to be solved become more important than a person to be loved." (President Thomas S. Monson, Finding Joy in the Journey, Oct. 2008) 

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.