Media Irresponsibility and a Challenge to Change the World

It is sad that in looking for a news story, the media has perpetrated an unfounded idea that not only hurts the people with autism, but also distracts from the memory of the victims of Sandy Hook. I challenge the media to provide informed news, not just first news. Media outlets have the power to sway elections and change public opinion, for better or worse. You have the power to hurt and emotionally scar. Use your power for good: be informed. You can be sensational without being inaccurate. You can change the world.

My husband and I discussed the horrific event at Sandy Hook, CT. When my son heard the news that the person who committed those unspeakable acts might have had Aspergers, he asked us, "Does that meant I am going to be discriminated against?" We assured him that he would not, although we were not sure. He has come such a long way, we did not want to do any of the progress he has made. We also quit watching the news for awhile, because we were angry that reporting news no longer means you are giving out accurate information, and this disregard is irresponsible.

In addition to my son, I have two daughters in third grade and kindergarten. So when the media reported an entire kindergarten classroom had been unaccounted for, I imagined my baby's class and her teacher. I also thought of my daughter's previous first-grade teacher who always calls her students "my kids" and refuses to allow just any substitute teacher in there because they are "her kids." My heart wrenched. When the pictures go up on the screen, I see my kids and their classmates. Their hobbies are the same, even two of the victims shared the names of my daughters. I am a substitute teacher. Yesterday, I taught a fifth grade class and I found myself examining the classroom for things to block the door with and where I could hide the kids should something happen. So I feel like I empathize with this story from several angles, even though until Friday, I could never have imagined it.

I hope that we never become numbed to this event. I also hope that the murders of these children and teachers lead to very important changes in society, beyond gun control. It is a sad commentary on our culture that it takes something as tragic as Sandy Hook to encourage conversations about change.

We should re-examine the roles and expectations of our teachers. Until Friday, our society worried about teacher's ability to meet test score expectation. Friday, we saw that teaching means more than "teaching." We leave our children in the care of their teachers for the better part of the day, and we now know how dedicated our teachers are not just to educating our kids, but to our kids.

We should overhaul our responses to mental illness. Obviously the person who took the lives of these beautiful babies and educators was in a very dark place. Did he seek help, or did they turn him away? Did anyone ever notice he had issues beyond autism and genius? Do we even understand what mental illness consists of? Apparently the media does not, and they are the ones talking.

We should increase autism spectrum disorders' research and understanding by our society. Don't give my son and me odd looks when he has a meltdown. Don't criticize him when he does not look you in the eye when you are talking to him, because I promise you he can repeat what you say verbatim. Don't call it a mental illness or personality disorder when it is not. My son has a beautiful personality and a fun and intelligent sense of humor. I have foregone a career to make sure he gets the care he needs, and I don't regret it although sometimes I question it... but only for a second. He would not have come as far as he has if I had not worked with him. Someday he is going to change the world for the better, so I hope you have been nice to him; as he is, by nature, genuinely nice to everyone he meets.

And, as this is the Christmas season, although it has been tainted somewhat this year; I hope that we find it in our hearts to be better friends, neighbors, coworkers, reporters, brothers and sisters, and better people in general. Do something nice. Randomly. Spontaneously. Follow their examples. Do something selfless for the teachers, students, and families of Sandy Hook who gave their lives setting the example.

The Gift of Possibility

Last night a beautiful thing happened.

My son, who is not supposed to be good at eye contact, who struggles with anxiety in social situations, who doesn't always understand language the way most of us do--participated in a county 4-H speech competition.

I worked with him on voice patterns, we worked on appropriate gestures, we rehearsed. Then he got up in front of two judges and the competition and their supporters and gave his speech about Beethoven. I was nervous for him, but I was so proud!

When he finished, he paced the floor, more from having to wait than nerves. The judges tallied the results. The participation awards were handed out. Third place came and went. Then second. Finally, they announced the First place winner and it went to my little man! He jumped up and down on the stage as the audience chuckled at his exhuberance.

He was difficult to put to bed last night. I've never seen him smile so big. He woke up this morning eager to go to school and share the news. I told him not to go on and on about it, but I will be suprised if he talks of anything else today.

I was proud that he wanted to try the competition and proud that he got through it (Many adults would have caved at that pressure). That he won and gets to move on to the next step goes beyond expectations. I am so happy for him!

I read yesterday a statement by a parent that said her fourteen-year-old sees his Aspergers as anything but a gift. Connor felt that way for awhile. Now he sees his Aspergers not as a disability, but a different ability. He has challenges just like anyone else, but they are different challenges than "everyone else." His success last night hopefully showed him that anything is possible and you can come through any challenge with hard work, drive, and a positive attitude.

Morning Circus

Getting three kids ready for school every morning is nothing short of a torturous exercise of patience.

I have a schedule posted on the wall for them (for typing ease, they will be referred to as #1, #2, and #3), they each have an alarm clock, and they go to bed pretty early. There are three bathrooms they can use with a total of five sinks. They get their backpacks ready for school the night before along with what clothes they want to wear which have to be approved by Mom. All of this to make it easy in the wee hours of the morning just before school.

Instead, they ignore their alarms and I wake the boy (#1) up until he insists he is awake and just about out of bed as he snuggles more deeply into the blankets. Then to the girls' room which goes a little more smoothly provided I haven't fallen on my face over the stuff littering their floor. #3 hops out of bed and hits the bathroom first and #2 sits up and scowls. I go back to #1's room and wake him up again and usually this time he will sit up. I hand him his clothes and tell him yes, he does have to put on clean underwear and no he cannot have five more minutes because he just had five more minutes and now he has to get moving.

Back to the girls' room where #3 is standing in the pile of clothes on the floor and staring at it. #2 is dressed, but not in the Mom-approved outfit. She has chosen a tank top and knee-length leggings (she is 8). When I say "no" to that fashion statement, she falls onto her bed with her arm over her eyes and wails.Breathe in, Breathe out. By now #3 has dressed and made it downstairs and realized she had homework after all (FYI: Kindergartners have an awful lot of homework.) Homework will have to wait. #1 is walking around his room trying to figure out if he should put his pants on first or his shirt. I get him situated and head downstairs to get breakfast going.

#3 takes forever to eat her Fruit Loops, #2 has now put on suitable attire and from here on out continues at an appropriate pace and some of the attitude has dissipated. #1 comes down to eat, but he moves SO SLOW! Stop. Breathe. Count to Ten.

By the time #1 is eating breakfast, #2 has come downstairs having brushed her teeth and fixed her hair. #3 is upstairs in the bathroom and taking a very long time to brush her teeth because #1 has finished eating and has made it upstairs to yell at her for it. In with the good air, out with the bad air. I head upstairs to intervene and get them both moving in the right direction, thanking God that I can drive them in today and they don't have to catch the bus today because I just heard it drive by our house.

#3 Comes down and I brush her hair and we now have two that have successfully managed to get ready for the day. #1 comes down playing and humming and since Dad works nights and is trying to sleep, this is not the best idea on his part unless he enjoys waking hibernating bears. Then he realizes he has library today and cannot find his library book which is already overdue so we all start looking for that. #2 finds it on the kitchen counter. Then he gets his backpack together, which he had insisted had been done the night before.

While we wait, the girls want a piece of candy since they got ready so nicely, then #1 hears that and they all fuss when I say no. My patience is now gone and I shout them out to the car where they argue over who gets to sit where and then end up sitting in the same spot they do every morning. The five minute ride to school with them strapped in goes fairly well as we have some time to chat together. Then, they hop out of the car, I them I love them and then....

I"M FREE!....Until they get home!

Victory at School!

Right now I am procrastinating about a million things. Besides the laundry and the dishes, I also "accidently" did not pick up a substitute teaching job today, or at least that is what I told my husband. What he would call lazy, I am calling redistribution of responsibilities. Today I also have to plan a drama program for a church arts retreat I am teaching to 1st through 6th graders this weekend. Should be interesting!

I enjoy doing the drama programs at our church. One, I love theatre-this gives me an outlet. Two, I have watched these kids grow not only physically, but emotionally. Some of them who were scared to get in front of people a year ago are now my divas. I have taught at least two kids in that group that are on the spectrum, and possibly a third, which is a crazy amount considering we are a small church. It is a beautiful thing to watch what music and theatre brings out in these kids!

Connor, for not understanding the emotions, is quite the thespian. The plays we do provide a safe outlet for him to experiment with emotions and volume control and facial expressions. Who would have thought that theatre would be such a handy tool for him!

Anyway, in other news...we also achieved a small victory on Monday. If you have read my other posts, you know of the teacher-trouble we have had with our Aspie. After contacting the principal with little initial luck, I proceeded to the next step in the chain of command which was a group for helping families with problems in the community and educational system. They told me to get Connor another IEP to use with that teacher. First of all: Band-Aid. Second of all, Not my son's problem. And third, the teacher made an inappropriate and insensitive comment which to a typical kid may not have been a major issue, but to Connor was devastating.

So, I moved on to the Special Education Coordinator for our school district and explained my concern. All I was looking for was to get the school some training, as my son was their first known Aspie, but certainly will not be the last if you look at the diagnosis rate. By 7:24PM, I had received an email from our principal detailing the steps they were taking to create a training presentation and deliver it to the teachers the very next day. Yay! Those teachers are going to hate me now! I don't care!

So we voted at the school yesterday and as we left who did we run into? The principal, the vice-principal and all the teachers involved in the training, one of which did not say hello. (Can you guess which one?) I thanked the principal, sure to get at least a dirty look but I did not. They replied that this was a good thing for them to do, and overall the encounter made me feel even better. Yay! Only one teacher hates me now! Still don't care!

That is not entirely true, I do care. My family is full of teachers, I understand the pressure. I could not do that job on a full time basis. Still, when your kids hurt, sometimes you have to get a little ugly. And I talked to my mother and cousin and other friends who are teachers who believed I was in the right. I was not asking for any form of disciplinary action against the teacher. All I wanted was for them to know how to deal with these kids who "seem so normal" but don't always see things "normally." And it looks like we succeeded. Yay!

Connor always asks me why he has to have Aspergers or has to be on this earth or has no friends, etc. Yesterday I got to tell him that maybe his first purpose is to help the Aspie students who will attend his school after him, so they don't have to struggle so much as he has had to struggle. For not understanding people so well, Connor has taught me a lot about them. From emotional security and experimentation through drama, to advocating for something you feel passionately about, to who cares what people think of you when what you are doing is right and important.

The drier just went off.....

Unsung Heroes

I have written a lot about my Aspie because he has had a rough and emotional week. But we could not have made it through with our sanity if it had not been for another person in our life. This post is dedicated to all the other little people in our lives that have to live with Aspergers, even though they do not necessarily have the symptoms: Siblings.

LC is Connor's eight year old sister. She is beautiful, has a flair for the dramatic, and has an amazing ability to empathize. She gives the best hugs (well, top 3 anyway as I have three kids and am not picking a favorite). She cries when Connor starts screaming and slamming doors, but is the first to help out when her brother requires my attention. This week, she recognized that he was overly emotional, that it was justified, and that he needed Mom more than she did right then. She walks him to his class when they arrived at school. She takes care of her five year old sister when things get a little crazy around the house. Yesterday, Connor jammed his thumb (although from the way he screamed you would have thought the thumb had been forcibly removed from his hand). I ran to him, and when LC found out what had happened, she came back to the family room with an ice pack, ibuprofen, and Connor's favorite stuffed animal, all without being asked. Even at school, she is the one the teacher calls on to help the new students.

Their school principal once told me that my kids were too close for siblings (They were in Kindergarten and Second Grade at the time). Well, we have moved around a lot and they look after each other. They are friends too and I would not change that relationship for anything.

My husband says LC is the heart of our family. She is the middle child, and so she often has had to relinquish the attention to her baby sister or her brother. She rarely complains and she smiles easily. Don't get me wrong, she has an attitude that rears its ugly head every once in a while and a mouth to match. But even when I am sad or exhausted from the daily drama, she will come to me and snuggle and we talk about her for a while. She takes such good care of us, I only hope I am taking as good of care of her. She is my hero.

The Bravest Guy I Know

This morning, I had to send Connor off for seven hours, to a place he did not want to go, to a place where not only are his peers making fun of him, but so are the very ones who are supposed to protect him.

We talk a lot about our Aspies' lack of eye contact or poor social skills, or odd ways of speaking, among others. What we do not talk about is how brave they are.

Every day, these kids face challenges that I have seen adults unable to handle. At school, Connor has been called names by his peers, the principal has said he was a behavior problem, the PE teacher told him he ran like a six year old (He was 9)and most recently, the teacher of one of his passions (music) told a classmate that Connor was weird. And every time these things happen, he gets up in the morning and goes back for more.

I just read something that said kids with Autism do not have normal human emotions. This was said by a mother of a child with autism. Well, I am sure every kid is different, but I can tell you mine feels more deeply than most people. He empathizes. He just doesn't understand the reasons or how the tone and meaning and facial expressions fit into it. It really is like looking at the same world as everyone else, but just seeing it through a different window than the rest of us do.

Connor knows and stresses that he has no friends. He watches his sisters play with their friends and cries because no one likes him. He tries to join in conversations only to find out he is being laughed at. He tries so hard and no one is noticing. He gets no credit, and still he keeps trying and going back to school, knowing that it is going to suck.

How many of us can do that? I have always been sensitive to rejection or negative attention so I avoided it whenever possible. But not Connor. He trips, falls, gets bruised and pulls himself back up again to keep walking. He is amazing. He has taught me so much. He is truly the bravest guy I know.

Aspergers in our School

Connor has been called gay, stupid, arrogant, retarded, and weird. No one will sit with him at lunch. Lunch, bathroom breaks, and in the gym while he waits for his ride or for class to start are the times when these things usually happen. Which makes sense, there aren't a lot of teachers focused on individual students at these times; and with predominately female teachers, no one is watching in the boy's bathrooms.

Yesterday at school, a "peer" called my son "gay" and "stupid". First of all, those words are not synonyms. Second, he isn't stupid by any standard. And third, so what if he were gay? It is not what most mothers envision for their sons, but if that is how things turn out, I will love him no differently. I told him that. His response, "Mom, I love you."

Yesterday, a fellow classmate told him that a teacher said he was "weird." Personally, I embrace weird. However, my boy was hurt that one of his beloved teachers would say that, especially to another kid. If I find out that this did occur and was not a fabrication of his classmate, the school is not going to like me very much. A Zero Tolerance policy cannot be enforced if the teachers themselves do not follow it. In fourth grade, a PE teacher (before Connor's diagnosis) told him he ran like a six-year-old in front of his whole class. His teacher supposedly handled it and I left that one alone. Mistake on my part, but lesson learned.

Today, Connor cried and refused to go to school. I insisted he go because he could not hide from things that upset him. I assured him that his teacher was on top of it, as she and I have talked. She has met with the guidance counselor and vice principal to figure out a solution. I have yet to hear back from her on that. She has until noon because then I am going up to the school.

Connor cried as he got out of the car today. His eight-year-old sister told him she was walking him to class. She ignored his protests. She is popular and feisty and even though she is probably half their size, could probably take out any fifth grader who crosses her. Part of me is sad that his younger sister has to look after him, but the other part of me is proud that even though Connor sucks a lot of attention away from her, she empathizes with him and takes care of him.

Connor's fourth grade teacher had been going to read her class a book about a boy with Asperger's but she kept not being able to find it. His current teacher has thus far denied any need to talk to the class about Aspergers. Connor wants to tell his class about it so maybe they will understand he is not arrogant or retarded or stupid. I can see pros and cons. He has an IEP that despite our wrangling and having an advocate with us is largely ineffective because what we fight for are social and behavioral, not academic. We were told in the IEP meeting that the school did not know what to do with him since he is both Gifted and Autistic. I have been to the principal and then told Connor brought it on himself. I have contacted the school board and been told that the principal was a good guy and to give him a chance and the principal blew us off. I love most of the teachers at his school. I love the standards they set for their students and the achievement they expect. But trying to get them to take care of my kid's needs is like ripping out my fingernails one by one.

My heart aches for him. I feel helpless. I am not a fighter...but I am learning.