Friday, April 18, 2014

What is Autism? (or) Why Does Tate Act That Way?

The following is what I would hand to a Junior High or High School student to read if they asked me to explain autism. The Center for Disease Control has just come out with new numbers and the rate of autism is 1:66. There is probably almost no one left that does not know someone with autism. It is important that people understand a little bit about this disorder. I wrote this with Tate in mind and not all of these things would apply to EVERY person with autism.

What is autism? Autism is a disorder that affects the way a person thinks. A germ does not cause autism. Autism is not a disease. People do not “catch” autism. A person with autism thinks much differently than a person without autism. When you THINK differently, you ACT differently. Being different is not a BAD thing to be but sometimes being different is a HARD thing to be.

There is a saying that goes like this: If you meet one person with autism, you have met one person with autism. That means not every one that has autism acts exactly alike. Even though people with autism are not just alike, they often have a lot of similarities.

Albert Einstein was a brilliant man. Many people believe he had autism.  He once said, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” This quote really hits the nail on the head. We cannot ask a person with a disability to perform as if the disability did not exist.

When most children are small their brains are like sponges, absorbing all kinds of things. They are always taking in new information and watching people to see how they behave. Children should be learning from the world around them. The brains of children with autism are not soaking up the information around them. Everything they learn has to be taught to them differently, in a much more structured lesson. It does not mean they are not just as smart as other kids. Actually they are sometimes VERY smart. They just learn differently.

Kids with autism can barely tolerate some of the things that seem perfectly acceptable to the rest of us. They may hate to be touched, or the opposite and like lots of touching. A small flickering light that most people can ignore could have the capacity to totally captivate the attention of a child with autism. A noise out in the hall that you barely notice might keep them from being able to concentrate. A scent that you find appealing has the potential to make a person with autism gag. If you ask a person with autism to taste a new food, there is a pretty good chance they will say, “no!”

What if everyone talked faster than you could think? Imagine living in a world that you did not understand. Imagine your teacher was speaking in a language you did not understand. You were still expected to do the schoolwork and while you were busy working, the school bell started ringing and wouldn’t stop. Even with the loud noise, you were supposed to concentrate on the assignment. Oh, and the whole time, there were bees buzzing around your face, the room was way too hot, and your shirt was made of sandpaper. Now imagine your teacher asking you over and over, why you had not gotten the assignment done? All your classmates finished. They got the instructions in a language they could understand. They never heard the school bell going off at all, and they did not have one bee bothering them. They thought the room was the perfect temperature, and their clothing was very comfortable. Remember that fish that should not be expected to climb a tree? How about that student that should not be expected to perform as if he did not have a disability?

People with autism are often called “concrete thinkers” and they have trouble imagining things the way the rest of us do. When they are young pretending is not something they learn to do without help.  Thinking about what will be happening tomorrow is not easy for them. As they get older they have trouble mastering many of the concepts they need to understand in order to succeed in school. A concrete thinker will probably need to use visuals with their math to help it make sense. A concrete thinker might be able to define for you what a policeman is and what a jail is for but he will not be able to explain ideas like justice or freedom.

Communication is not easy for a concrete thinker. A person with autism might not understand that a word can have more than one meaning. For example, if you heard someone say that a football player ran ten yards you would picture him on a football field. A person with autism could be picturing a man running through a neighborhood, jumping fences and dodging swing sets, as he ran across ten lawns (yards). Then there are idioms and other ways of saying things that make no sense to a person with autism. If you say, “He got cold feet and chickened out” then a person with autism might picture a barefoot man standing next to a chicken in the snow. Top all that off with puns and sarcasm when we say the opposite of what we really mean and communication becomes very complicated for a concrete thinker. As you go through your day listen to all the language around you. If you hear things like, “It was a piece of cake” or “He pigged out at lunch" think about the confusion a kid with autism would be having understanding what is being meant by these things.

A person with autism will probably speak differently than you do. Their voice may sound odd. It may seem stiff or sound monotone. It is sometimes hard for a person with autism to organize their thoughts and express them. They may use words that seem strange and their thoughts may be strung together in a way that does not make sense to you. Some people with autism are unable to have a conversation with give-and-take. They state facts or make comments but they do not seem to be interested in your participation or opinions.

A person with autism might talk about unusual things or a topic that interests them for extended periods of time. Maybe they are interested in movies, video games, computers, castles, trains, vacuum cleaners, geography, calendars, presidents, trees, insects, or another topic. A person with autism finds it easy and enjoyable to focus on something they are interested in, but very difficult to focus on anything they are not interested in. That makes it very hard to learn new things. Here’s an example: Tom is so interested in volcanoes that he can name almost every active volcano in the world. He can tell you all kinds of statistics about volcanoes and lava. However, Tom cannot seem to remember anything at all the teacher has told them in history or science unless it involved information about volcanoes. Not every person with autism has special interests like this but many do.

Most people are developing “theory of mind” before they enter kindergarten. This theory of mind is just the understanding that other people are thinking things that you may not be thinking. They may not like the same things you do and they may really like things that you do not care for. Understanding that other people do not think exactly the same things that you do is pretty important. Without this understanding it is really hard to make friends and maintain relationships. People with autism do not understand the teamwork of friendship so they need a lot of help from people who are willing to become their friends.

Repetitive behavior is an issue for people with autism. Repetitive behavior can seem very odd. Often when a small child has autism they like to watch things that spin or they drop things and watch them fall over and over. A child with autism can spend so much time doing these things that they miss out on many opportunities to learn new things. Spinning things and watching things drop are only a couple of the things that children with autism might find entertaining. These and other behaviors are called “stereotypic behaviors” or “self-stimulatory behaviors.” Sometimes we just call them “stims” for short. A kid with autism might like to pace the floor, walking on their toes with a sort of bounce to their step or make the same noise over and over. Perhaps they wiggle their fingers or even flap their whole arms. When they are engaging in these stims it seems to make them feel better. They do these things when they are excited or stressed or just bored. It will be hard to get their attention on something else but it is good to try.

Stress is a big part of the day for a kid with autism. Kids with autism prefer a schedule and they have a need to know what is coming up next. Transitions from one activity to the next cause them stress. Surprises can make a person with autism very anxious. Having a routine makes life easier if you have autism.

People with autism have trouble looking at others’ faces. When you talk to a friend you look at them. You watch their expressions. You can see if they are paying attention and looking back at you. You would be able to tell if something you said made them angry. If they seemed bored or were looking away then you would understand that you should change the subject or find a different friend to talk with. Making eye contact is a very important social skill. People with autism have to be taught social skills that just came naturally to the rest of us.

Along the same lines as watching a person’s face and expression, people with autism have trouble figuring out what a person is looking at. Have you ever noticed that when someone seems excited or upset you look at their eyes to see what they are looking at? Then you follow their gaze to see where they are looking. These are the kinds of things that a person with autism has trouble doing. Some people call it “thinking with your eyes” because we usually look at what we are thinking about and most of us use our eyes to communicate many things. People with autism have to be taught to “think with their eyes” but to most people it just comes naturally.

Because a person with autism has trouble looking at faces, it means they cannot always identify a person by their face. You might sit beside a person with autism for the whole school year and then run into them in the community after school but they cannot recognize you. Not all people with autism would have this difficulty but many would.

Sometimes when a person with autism is speaking they sound rude. They probably do not mean to be impolite and have no idea they are not being nice. It does not help to be rude in return. They will not learn from it. It also probably does not help to ignore the rude behavior. If a person with autism seems rude, and you would like to help, it best to gently tell them their words seemed rude and explain why. Do not go into a long explanation but if you can explain in just two or three sentences a better way to say what they said, or better tone of voice to use, you might be able to help them learn.
I am not sure you can really explain autism to a child much younger than five or six years of age because they themselves are just developing their own theory of mind and understanding that everyone is different. When a child is very young and a parent knows they will be exposed to children with disabilities I think they should probably just tell them that everyone if different and that is okay. Then remind them often to be kind to EVERYONE, even the kids who seem different than the rest.

I have a very simple description of Tate and his autism that his teachers’ used to present to his classmates each year when he was in elementary school. I have revised it several times over the years. It started off much simpler when it was being read to first graders. See attached: 

Monday, April 14, 2014

Loving Chaney

Tate was our sixth child. He was born in 2001 and long-before we knew he had autism, we decided our family was complete.  Shawn started his own business that same year and we felt like our plates were full. I was secretary, receptionist, and dispatcher, as well as wife and mother. Then, when Tate was two, I got a huge surprise. I found I was expecting a seventh child. Unplanned or not, we were THRILLED and I hoped and prayed that I was carrying a little girl.
I had the usual visits to my obstetrician. At the first visit the nurses teased me about my “surprise” and my age. I was forty. At my second or third doctor visit we heard a heartbeat and everything seemed fine. At sixteen weeks we did the normal blood work to rule out all the things doctors like to rule out. I’d done it all before and was not worried. However, this time the test results came back saying the baby had a one in ten chance of having Down’s syndrome.
My doctor was very concerned and urged me to get an amniocentesis. One in ten did not sound that alarming to me. And then I talked to an Obstetrician friend of mine and did some reading. The results normally come back as one in several thousands. My friend told me that test results like mine probably meant my baby had Down’s syndrome.
I prayed over and over that my baby would be born without a disability. I always added to the prayer that I would miscarry if my baby had a disability. I wanted God to have my baby in His care if she was to be born with a disability. I knew that Shawn and I would have no issues with loving a child with special needs. I was just terrified of all the unknowns and the things that would be required of me if I had a child with special needs. I was afraid of all the time and attention a special needs child would take from my other six children. I really did not think I had what it would take.
I refused the amniocentesis because of the risks involved. I was deeply in love with my baby and did not want the baby harmed. However, I did agree to a level two sonogram. The doctor said it would give us some detailed measurements and probably tell us almost for certain whether or not the baby had the measurements that came with having Down’s. The heart was to be examined closely as well as other things.
We left that appointment greatly relieved. The doctor was so encouraging. He believed the baby was developing as it should with no problems. The measurements looked completely fine, and the heart looked healthy. We also got to see that we were having a girl. She moved around and wiggled for us on the monitor and appeared very active and healthy. We had a name picked out and we began using it. Her name was Chaney Nicole. We had about two weeks of absolute joy. And then… I went in for a regular OB check-up. I was a little nervous when the doctor had difficulty finding a heartbeat. The longer he tried with no results, the more afraid I became. The doctor took me down the hall to get a sonogram, and our fears were confirmed. There was no heartbeat. My precious little girl was dead. Less than two weeks before, I had seen her heart beating, her little body moving and I had heard a doctor say she was healthy. I was in shock.
The next morning I had labor induced. One day, I was halfway through my pregnancy and very excited about our new daughter. The next day I was sobbing uncontrollably in a labor and delivery room, dreading the end of the day. All of the nurses were very patient and kind. Because I insisted, they brought in a monitor and we listened for a heartbeat one more time. In a few hours I delivered a tiny baby girl. Chaney was perfectly formed. Her tiny footprints were one inch long.
I could hold her in one hand. She was seven inches long and weighed less than four ounces, although she had weighed almost twice that when we saw her on the sonogram two weeks before. She had probably died shortly after that sonogram that gave us so much hope. Touching and holding Chaney helped me so much. I had been crying for hours before she was delivered, but holding her helped tremendously with the closure I needed. Shawn held things together for me throughout the labor and delivery and about the time my tears stopped, his began. That time we spent with Chaney's body in the hospital was so valuable to me.
It is so hard to know what to say to someone who loses a baby. There is no one-size-fits-all comment for sure. Many sympathetic people came to call after Chaney died. Some said hurtful things without ever knowing it. One Christian friend commented, “God must have thought you didn’t need any more.” This person did not mean to hurt me and probably believed the comment to be true.
Some people assumed that because I was the mother of six living children, losing Chaney would not hurt as badly. I could not understand that. Having the other children around me was comforting, but my loss was the same as any other mother’s loss. Did people think my grief was one- seventh of the intensity of a mother who loses an only child? Would that also mean because I am a mother of seven, I have seven times the amount of love as compared to the mother of an only child? I don't think so.
Two older women from the congregation where we worship had also lost baby girls in similar situations. They each told me their stories and that helped me so much. They let me know that I was not alone. Both of these women had boys when they lost their baby girls and never got the opportunity to raise a daughter. I realized how blessed I was in comparison to those women. I had two little girls at home, as well as boys, when Chaney died.
I was sad for a long time after Chaney died. I think about her often still. I know she is in a much better place than I could have provided, but my arms still long to hold her. Chaney was not my first miscarriage but the others I had were much earlier and did not cause me the amount of grief that losing Chaney did. Perhaps it was the bonding time I had with her. I have felt some guilt from time to time. Did I deserve to be Chaney’s mother? I had prayed that she would die if she were handicapped so I would not have to bear the burden of raising a special needs child. Did God answer my selfish prayer? For indeed it was a very selfish prayer and I had many lessons to learn.

Chaney’s short life did matter. Because she lived and died, we made a decision to “save” another little girl. Several times I had seen footage of international orphanages on news programs. I wanted to give one of those children a Christian home and a mother’s love. My husband had never shared my yearning to adopt a baby. Then, when Chaney died he felt we had already made room for one more in our hearts and our home, and that space needed to be filled. We knew we could not replace Chaney but Sydney has definitely helped to fill the hole that was left in our lives and in our hearts. Chaney was here for a short time and she “paved the way” for Sydney to join our lives. You see, while I was praying that God would not “burden” me with a special needs child, I already had one with autism who had not even been diagnosed yet and Sydney was lying in a crib across the ocean needing a mother to love her. God knew. He knew I could handle a child with special needs. He knew I could handle two. And I believe he knew that I had a whole lot of lessons to learn. I thank God that I now fully understand that children with disabilities are not a burden, but a blessing. 

“…glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope” (Rom. 5:3-4).

Find me on Facebook at Quirks and Chaos

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks!

Wednesday, April 2, 2014

Why I Wore Blue Today

What did the color blue ever do for me? Actually, my family would laugh at this because blue is my favorite color. I wear mostly blue and decorate almost exclusively in blue. Once, my older sister had an intervention of sorts for me.  I asked her opinion on the counter top I was looking at when remodeling my kitchen. I was leaning toward blue. She looked around and said, “No more blue! Your carpet is blue. Your walls are blue. Choose a different color for your counter top.” Ha! I chose a light green with a splash of blue in it.

Why do mothers of children with autism ask their friends and family to wear blue one day a year? It has nothing to do with the color itself. What can the color blue do for us? The answer is fairly simple for me. The color blue cannot perform some kind of therapy for our children. It cannot help with their social skills, their communication skills, or their motor skills. It cannot calm them, lessen their quirkiness, or ease their anxieties. By wearing the color blue on World Autism Awareness Day, you let me know you care. You let me know you are “aware” of our walk. My family does not want your pity or your condolences. We would like your empathy though. We would like to know that you know that we are struggling and that you understand just a little bit. THAT is what the color blue did for me today. When I knew that Tate’s school had made an announcement yesterday to let the students know that today was Autism Awareness Day and people were wearing blue in support of awareness, it let me know that the administrators care.
          Tate with his two amazing teachers
On a much bigger scale, the campaign to wear blue for autism awareness is exactly what it sounds like. It is about educating the public. People today know so much more about what autism is than just a few years ago. It is partially because of campaigns like this. The Centers for Disease Control announced last week that the numbers are now 1:68. You would have to live virtually in isolation to avoid knowing people with autism in this day and age. The education and consciousness takes away the fear of the unknown. It diminishes the bullying of people with autism. Our education about autism causes people with autism to become so much more approachable. Awareness makes it easier for them to attend school, easier for them to find employment, easier for them to fit-in in their communities, and easier for their peers to befriend them. Even the word itself, “autism,” is becoming a word used in everyday conversations. Raising awareness if very important to us in the autism community. Awareness of what autism is will keep our children safer and cause their futures to be so much brighter.

Educating the public also means that children with autism may receive a diagnosis earlier and receive the early intervention they need. I am confident that every dollar spent on early intervention saves many dollars in the long run. So many of the children who receive intensive early intervention become successful in ways they could not have otherwise. They may need a lot less support as adults. The younger the intervention, the better the results. The brain is much more malleable when it is young. Education and awareness are so important. So next year, on April 2, “light it up blue” for autism awareness.