Special Interests

    One common trait for children and adults with an autism spectrum disorder (ASD) is the presence of one or more “special interests.” According to the diagnostic manual for ASD these can be described as “highly restricted, fixated interests that are abnormal in intensity or focus.” These interests can be a variety of things like a favorite video game or a favorite TV show or maybe it’s geography or trains. If you know someone with a special interest, it probably didn’t take you long to figure it out because it’s likely one of the only things he or she talks about.
    My daughter is no different in this regard. Throughout her years she has had several different special interests. One of these was volcanoes. She still likes them, but not with the same intensity as before. She would research volcanoes around the world and could tell you about types and names of volcanoes that most people have never heard of. A few years ago, as a reward for working hard in school, we took a memorable trip to Mount St. Helens so we could see a real volcano. One of her dreams now is to visit (or live in) Hawaii and go to the Volcanoes National Park so she can see an active volcano with lava.
    Recently my daughter’s special interests have turned to local sports teams; it seemed to happen overnight. One day she was complaining about us watching boring games on TV and then the next thing I know she’s a die-hard University football fan and a loyal fan of our local NBA team. She knows most of the players on these teams and who’s injured or who’s graduating or who’s being traded and when their seasons start and end and who they’re playing and what their records are against other teams, etc. She’s not just a fan, but she also despises the competition and is very vocal about it. We dread when her team loses because it makes for a very difficult evening for us with lots of anger and emotion.
    We enjoy that our daughter has some outside interests and that she can relate to other sports fans and enjoy some comradery. However, sometimes this intense focus can lead to social problems when others don’t share the same opinions as she or when she doesn’t talk about anything else. For instance, she has to try really hard to overlook the fact that many of her friends and family don’t like the same teams she likes. Some think this is cute or endearing, but for her it is personal and serious. There’s a boy at her special needs school who is an intense fan of a rival team and the two of them together are a toxic mix. They have difficulty tolerating each other.
    Another challenge that arises is that our daughter struggles to discuss anything else besides her sports teams. I’ve noticed that it can create awkward social situations because others tire of the subject or they don’t delve into the details as much as she does or they don’t know how to be polite and change the subject. Sometimes she doesn’t let them add their thoughts and she talks over them. As her parent, this can be difficult for me to watch, because I see how hard she tries to be social and fit in, but she often stumbles.

    So from a parent’s perspective, I have some advice. In our society, we are  taught to be polite and kind and accepting to people with special needs. Sometimes this is translated to mean letting them do whatever they want and ignoring inappropriate behaviors because you don’t want to be perceived as intolerant or cruel. I think this works if you have very little interaction with the person with special needs, however, it’s not so effective if you have regular contact with the person. I don’t consider it kind to endure or put-up with certain behaviors or conversations and pretend to be listening or to be a friend when in reality you dread the interaction or want to get away. I think the kind thing to do is to use what I consider “loving honesty.” If you’re one of the people that sincerely enjoys the conversation despite the social faux pas, then keep it up and thank you for your patience. However, if you find the conversation awkward or frustrating then may I suggest trying the following lines or something similar:

“I sure love you, but can we talk about something else?”

“I have five more minutes to talk about this and then let’s change the subject, ok?”

“I remember when you told me about this last week. Has something new happened?”

“Do you want to know what I think about it?”

“Wait! You’re so excited, you didn’t let me finish what I was saying.”

    Using loving honesty will hopefully make the interaction more enjoyable for you and for the person with ASD, like my daughter. She is capable of learning and could use some guidance along the way.

Education: Part 2

      I'm starting to pack up the textbooks and materials from the last two years of home school.  It's time to send them back to the online school.  My daughter just started attending a charter school for kids on the autism spectrum.  We are very grateful.  She had been on the waiting list for 2-3 years. 

     I do have some mixed feelings as I look through the books and supplies.  Some of the materials we never used.  We never made it through the literature book to the chapters about the Wright Brothers or King Arthur and we never used the sand or the magnifying glass in the science kit.  Division and mixed numbers are still mysteries and the spelling lists for "ph" words and "gu" words will have to be tackled another time. I would have liked to explore all of these things.  I love learning and I wanted to engage my daughter in it.  It would have been so satisfying to say that we made it to the end and finished.

     I wish I could wrap up the whole homeschool experience and call it a major success, but "success" probably isn't the right word.  I can't evaluate it in the same way I might with other experiences in my life. I wish I could say that through effort and hard work and determination we made leaps and bounds in her academics.  There was a lot of effort on both our parts, but the truth is, her progress was slow and labored.  It tested her and me to our limits.  I almost quit several times.  MG was often uncooperative and defiant because of her struggles and I wondered if this was worth it.

     I wish I could say that I knew exactly what she needed and knew how her brain worked and was able to teach to her specific needs.  However, many times I was bewildered and perplexed.  I was often confused (or just exhausted) about how to help her.  Some techniques and incentives seemed effective one day, but were useless the next.  It was easy to blame myself.

     I wish I could say that homeschooling was the right decision, but circumstances being what they were, there didn't seem to be a right choice.  The alternatives had their own problems. Nothing seemed ideal, so we took the situation as it was, made a decision to homeschool, and worked with it.  Many days were smooth and MG was engaged, and many days were a trial and difficult, and some days I just want to forget.  But we kept plugging away.

     So when trying to define how the last couple of years went, I have to be satisfied with "we tried." I think that is a worthy assessment.  We tried, we learned, we grew. We will continue to try and try again throughout this whole journey.  Would I home school again if needed? Yes.  Is it likely? No.

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.