Unpredictability Means Anxiety

When Tate was a toddler there were many things that caused him anxiety. Taking an alternate route to a familiar place could set him off. A power flicker would guarantee a meltdown. There would be crying, hyperventilating, and lots of stimming. I did not understand the real issue behind the anxiety when Tate was small. I assumed he was afraid of the dark or afraid of thunder as many young children are. He seemed so terrified at the first sign of raindrops. I wondered if he could be afraid of the color orange because detour signs seemed to cause him pain.

Because Tate did not really have conversations but mostly just talked AT us, it was hard to understand what he meant when he tried to tell us things. It was also hard to reason with Tate about anything. I was often left scratching my head, playing detective to decipher what he was trying to tell us.

Being so anxious when it looked stormy left me wondering if maybe Tate had a fear there might be a tornado since we do live in Kansas and have warnings fairly often. I also assumed he was afraid of the dark because of his reaction to a power flicker. I bought flashlights that charge in the outlet and stay lit so if the power went out it would not be completely dark. I wrote a social story about storms and the dark. I reassured him anytime he seemed anxious about the weather that our home was very safe. Yet, I could not see we had really helped him at all.

I eventually discovered Tate’s anxiety was not really about the darkness or the storm outside and definitely had nothing to do with the color orange. As I watched him react to detour signs in the road and light switches that would not respond, I came to realize Tate was really afraid of the unpredictability a power flicker or a detour sign brought. He had to be able to COUNT ON the lights when he flipped the switch. He needed to be able to COUNT ON the road that took us to his school or to the store. Tate’s world revolved around routine and sameness. When we drove a different route to a familiar location, he panicked. When the lights went out, the television stopped and the video games stopped it was all out of his control. The meltdown was not out of anger and never about the fact that a power outage had caused his movie to prematurely end, as it might have been for a typical toddler. The meltdown was out of anxiety because he did not KNOW when the power would come back on or the road would open back up. Tate could not handle the fact that the television and lights were no longer reliable or our route to the store had changed. Tate has to KNOW what comes next in order to feel secure. He needs to be able to hit “play” on the DVD player and know it will play. He needs to know we take two rights and then a left to get to his school. His world is much smaller than yours or mine. 

Tate is 13 now and barely has a reaction these days when our power flickers or goes out during a storm. He never becomes anxious if we see a detour sign now either. I am elated at the progress he has made. The last few times we have had power outages at home, he retired to his bed with a flashlight and a battery operated game. He stims a little more but he does not cry or panic. There is light at the end of our dark tunnel… pun intended.

Tate still has anxiety often and sometimes there is little I can do to help. The last nine weeks of this past school year, Tate’s bicycle was at school. Bike riding was incorporated into Tate’s P.E. class at my request. Having his bicycle at the school upset Tate. His anxiety level skyrocketed and his number one topic of conversation for three or four weeks was about his bicycle. And then he stopped obsessing as if it had never been a problem. That is progress.

Our school district’s Extended School Year (ESY) began recently. ESY is just another name for summer school. We actually do not call it by either name at our house. We call it math camp. Tate does not go to SCHOOL in the summer but he is willing to participate in MATH CAMP. And as every other child is walking through the school doors to have summer school, Tate is going to “math camp.” Anything to avoid the anxiety.

Ten years with the autism diagnosis and I am still learning. The same week ESY was to begin I was going to be away from home for four or five days. I needed to prepare Tate for what to expect while I was gone. I explained he would be escorted to Math Camp by an older sibling. I showed him I had bought his favorite snacks. The more I talked the more he stimmed. His eyes were beginning to water and his face was going splotchy. I assumed he was upset because I was leaving or because summer school was starting but that was not the problem. Tate reminded me the new Sponge Bob movie would be out on Tuesday while I was gone and I had promised to take him to buy it. As soon as his older sister assured him she would take him straight from the school to Walmart, his face cleared up and his stimming stopped. It was all about the movie, of course!

A few years ago the conflicts and the anxiety were much harder to manage. Tate’s communication and my detective skills were not as developed a few years ago. Tate could not calm himself as quickly then as he can now. That light at the end of the tunnel keeps getting brighter!

If you liked this one you might like to read: Don't Touch My Skin

An Autism Mom's Thoughts About Disney's Inside Out

Spoiler alert. I’m going to talk in detail about the plot and the characters from the Disney movie “Inside Out.” Stop reading if you do not like spoilers.

If you’ve followed my blog for more than five minutes and if you know anything at all about us then you know my son Tate has autism and our lives revolve around movies. He has the release date of all the movies he is interested in (which include most G and PG rated ones) on our calendar. I don’t know how he does it, but before most of us have seen the first trailer for a new movie, he has the release date on the calendar and has memorized the actors involved in the making of the movie. To Tate, these things are as important as our loved ones and our careers are to us. He spends most of his waking minutes thinking about movies and talking about movies. So, of course today, on opening day of Disney’s “Inside Out” Tate woke with great joy (pun intended.) He toe-walked and bounced as he paced all over the house in anticipation. I was a bit apprehensive myself. We had been told earlier in the week Tate should avoid popcorn as he has just gotten braces on his bottom teeth. Tate was not happy about this news and had been telling me all week the orthodontist must have been mistaken. But we went to a favorite restaurant before the movie, got some m&ms, and a bottle of water, and settled into our seats without incident over the missing bucket of popcorn.

The first five minutes of the movie were brilliant. Absolutely brilliant. The writers and animators illustrated a baby’s first feelings and memories and how they are stored away. They took a very complex and abstract idea and made it simple and clear. I loved it. We were introduced to the emotions of a girl named Riley. There was Joy, Sadness, Anger, Fear, and Disgust. Each character was well defined for the targeted audience of children. The characters sat behind a control panel and used the controls to react to the things happening to Riley throughout her day. They collaborated to decide which of the emotions should use the controls and help Riley to react.

The moral of this kids’ movie was a credible message for adults. I cannot always find a real solid plot in animated movies but this one was pretty clear to me. And I think it was a good one for parents to think about. The character Joy went to great lengths to help Riley avoid Sadness and be happy all the time. Riley’s parents unknowingly had pressured her to be “their happy girl” so Riley tried hard to put on a front even when she needed to be something other than happy. The premise of the movie was that Sadness is an important emotion, and one we cannot always avoid. Sometimes our children have to be sad. We cannot shelter ourselves or our children from every sad experience out there. And we cannot ask our children to deny their genuine feelings of sadness so we will not be inconvenienced either. I understood the message to be that sometimes after a sad experience we can find happiness we would not have otherwise found. Without sadness there would be no joy.

We were exposed to personifications of other characters’ emotions as well. If you go to see the movie, be sure and stay until the credits roll. It is then you will see Joy, Sadness, Anger, Fear, and Disgust as illustrated for Riley’s teacher, a dog, a cat, a clown, and a few of the other people in Riley’s life. This was another magnificent part of the movie for me. Every character had the same five emotions that were almost identical in appearance. I began to ponder at that point, what would it look like if I were able to illustrate those five emotions for Tate in the same way they had done in this movie? Joy would sit at Tate’s control panel and giggle for long periods of time while everyone around him wondered why. Sadness would be very confused, underdeveloped and never able to convince Tate to cry, while Anger would be able to produce tears when he was provoked. Disgust would be overactive. Almost every food the rest of us eat would cause that character to recoil and gag. Smells other people barely notice would be a problem for Disgust too. Fear would have to be depicted as a hyperactive character who was extremely neurotic for Tate I think. He would always be trying to grab the controls from the other emotions. If I were able to personify Tate’s emotions I think I’d add a sixth character. He would be a sort of big brother to Fear. The sixth character would be named Anxiety (or Stress). Anxiety would tower above the other five and be a giant among them. Anxiety would have some massive muscles and would push the other emotions around. He would constantly be pushing his smaller brother Fear to talk louder. He would silence Joy anytime he got a chance. Anxiety would be a tyrant.

Even during the movie Tate had been so excited to see, his anxiety was ready to suck some of the joy right out of the experience for him. During one scene, Tate became stressed when Joy, Sadness, and another character were trying desperately to find their way back to headquarters. Tate became restless and said to me, “Nothing to worry about. Stay calm. They are going to save Riley.” Tate often reassures himself when he is anxious by offering support to me. Another time, Riley’s dad got stern with her and frowned after she had misbehaved. Tate became nervous and leaned over to ask me, “Her dad still loves her, right?” I assured him that dads still love their kids even when they are unhappy.” I know Tate struggles to understand these kinds of things and has always been nervous when someone speaks to him seriously about anything. He needs people to smile at him, even if they are explaining something quite serious or speaking to him about danger. Tate seems to believe Joy is equivalent to love while Anger or Sadness cannot be. After the movie I took the opportunity to talk with Tate about these things. I had hoped the movie would be a real teaching tool for us and I believe it was. I would highly recommend this movie to the autism community. Disney did a good job with this one. 

If you liked this post you might like to read about the anxiety Toy Story caused for a while. Woody and his hat were a big thing at our house when Tate was younger. Here's the link:  Unusual Attachments

Sydney's lopsided conversations

I tried to document a lot of Sydney’s morning before school today. I haven’t done it in a while and it is always interesting. This was mostly before the medications would have begun to help her slow down and focus. I couldn’t get it all because she talks way faster than I type, but I tried to jot down the highlights. You’ll notice that I do not always respond. I would if she would pause long enough but she does not usually even wait for an answer to a question. She just jumps right to another topic.

In between a lot of these lopsided conversations she was running in circles, opening doors, counting by fives, clapping rhythms with her hands, turning on noisy toys, running in and out of her room, looking in the refrigerator, knocking on the window at the dogs, eating her breakfast, and pestering Tate.

Sydney, first thing this morning: “Mom, Does your jaw hurt?” Me: “Umm, no.” (I have not had any jaw problems…) Sydney: “Well, my shoulder hurts. Do you know why it hurts?” Me: “No.” Sydney: “I know why it hurts. Do you want to know why it hurts? It hurts with a throb.” Me: “Did you sleep on it wrong?” Sydney: “No. I think it is the bone inside of it or the stuff around it.”

Sydney: “Did you take a shower?” Me: “Yes.” Sydney: “I believe you.” My thought bubble: Oh, I’m so glad you think I am credible. Sydney: “I hollered for you and then I hollered, ‘Dad? Dad?’ and all I heard was Levi. Did Levi go to work with Dad?” Me: “Yes.”

Steve and Sydney

Sydney: “I’m so HUNGRY! Can you cut me up an apple and put peanut butter on it? CRUNCHY peanut butter.” Me: “Sure.” Sydney: “Can I feed the dogs?” Me: “Levi already did.” Sydney: “I need to see Steve.” Me: “After breakfast.” Sydney: “I’m not hungry.” Me, handing her the plate with her apple on it: “EAT THIS!” Sydney (like I’m ridiculous and she is patronizing me): “Okay. Okay.”

Sydney: “Did you want me to get up this morning or lay in my bed? ‘Cause I was awake. I checked and Dad’s clock said 7:51 [7:15 actually] but that was running too fast for me.”

Sydney (following me into the laundry room): “Can I push start on the dryer?” Me (throwing clothes into the dryer): “In a minute.” Sydney: “It sounded like there was something clinky in there. Like a penny or something.” Me: “I didn’t hear it.” Sydney: “Maybe I made it up.”

Sydney: “Why did you get me a drink of water with my pills? Now I need to potty!” Sydney from the bathroom: “Mooooooo Moooooooo Mooooooo” Me: “Sydney, please stop mooing from the bathroom.”  Sydney: “Okay Mom! I’m hurrying!” Me: “Take your time. Just stop mooing!” Sydney: “Okay!” There was silence for one minute. Then….. Sydney: “Mooooooo. Moooooo” Moooooooooooo!” My thought bubble: Why couldn’t she have liked turtles best? They are so quiet.

Sydney: “Do you know how humming birds peck at windows? Well I dreamed about humming birds and there was this woodpecker who came to my window and woke me up. I let him in and you got mad at me. You said, ‘I don’t think that is a woodpecker. It is a blah blah blah bird.’ I said, ‘it is a friendly woodpecker’ and you said, ‘it is just an ordinary woodpecker.’” My thought bubble: Even in her dreams I suck all the fun right out of everything. But I’m so confused. Was this story about a humming bird, a woodpecker, or a blah blah blah bird?

Sydney settled on black and white and it turned out great. 

Sydney (picking up a wooden cow): “I really need to paint this cow. He looks naked. I’ll paint him today after math camp. Do you know why I hate going to math camp? It is because of going to my group. ____ is in my group. He looks at me like he is mad at me.” My thought bubble: I cannot imagine why. Sydney: “Should I paint this cow brown like a Brown Swiss or should it maybe be a Holstein?”  Me: “Whatever color you want.” Sydney: “Can I use your paints or my paint?” Me: “You can’t use watercolors. You’ll have to use my paint.” Sydney: “What colors do you have?” Me: “Too many to remember.” Sydney: “I want to make it really colorful. But…. What color is an udder?”

Sydney has had swimmers ear so we’ve got drops from the doctor. I told her we needed to get the drops in her ear before school and she said: “How long do I leave my ear drops in?” Me: “Five or ten minutes.” Sydney: “So, until Nine O Ten?” Me: “No.” Sydney: “Then how long?” Me: “Five or ten minutes.” Sydney: “So when it is Nine O Ten can I get up?” Me: “There is no such thing as Nine O Ten.” Sydney: “What time is it?” Me: “Sydney I don’t know what time it is right now but ten minutes after nine is called Nine Ten, not Nine O Ten.” Sydney: “So how long do I leave the ear drops in?”  Me: “Five or ten minutes.” Sydney: “So until Nine O Ten!” My thought bubble: Where are those eardrops? I think the directions said something about leaving them in ‘til Nine O Ten. Wait….

Sydney: “When you are gone to camp I will miss you.” Me: “I will miss you too. Regan and Dad will take good care of you.” Sydney: “Why does Regan have a headache today? What is a mind-grain anyway? I have too many mosquito bites. Oh Mom! There is a wasp nest out in the chicken house. I forgot to tell you yesterday. I don’t know if it is a wasp nest or a mud dauber’s nest. Dad needs to bring that spray out there. What color are wasp nests and mud dauber nests?” Me: “I’ll show you a picture later.” Sydney: “How about now?..... Hey! What are you typing? Is that about me?” Me: “It’s time to go to school.” My thought bubble: Heaven help her teachers today.  

Want to read about other mornings we've had? Here's one: Saturday Morning With Sydney

The Toughest Thing About Having A Child With Autism? It Changes

Recently I have seen a couple of blogs that tried to pinpoint the one toughest thing about having a child with autism. I have never been able to write that one because for me the hardest thing changes. Some years it was one thing and some years another. On any given day I would probably give a different answer still.

Before the actual diagnosis, the hardest thing was trying to figure out what was going on. Then, at age two and a half the hardest part was explaining autism to others and trying to get them to accept the diagnosis. At that time I was still on the edge of denial myself. Then there were some really hard months of educating myself about autism, the best therapies, and reading everything I could get my hands on. I barely slept. The hardest part for a while was physical exhaustion.

Always crazy about hats

At age three and four the hardest parts were eliminating stereotypic behavior and resigning myself to having teachers and therapists involved in almost every waking minute of my son’s day. Oh, and the cost. The money we were always trying to find to pay for all the teachers and therapists. That was so very hard. Then there was the guilt. That was hard! My son has siblings. They lost a huge part of their mother to autism. I found the guilt a very heavy burden to bear. I could not be there for so many of the things my children needed me for because their brother needed me more.

At age five the hardest part of having a child with autism was the transition to public school. The early intervention had helped him so much but the special education department of our local public school, could not and would not do the things I thought they should for him. The transition was hard but the years after that were harder. Having your special needs child in the care of someone who you do not communicate well with is torturous.

When those hardships were finally resolved, the stereotypic behavior was once again the hardest part to deal with. Sometimes it seemed almost obsessive and compulsive. When we were successful with eliminating a targeted stereotypic behavior, sometimes it was replaced by something worse.

Some days if you asked me what the hardest part of having a child with autism is I would definitely answer, “watching him wrestle with his anxiety.” He is generally a pretty happy guy but it only takes a few seconds to change things for him. His worries are sometimes ridiculous to the rest of us but so real to him. It is so so hard watching him struggle. 

And always, ALWAYS, hanging over my head is my own anxiety: the worry about the future. What does the future hold for my son? What will happen to him when I am gone? Will there be a place for him in society? Will he be happy? What will become of my sweet Tate? Today, that is the hardest part of having a child with autism. But if you ask me tomorrow, the answer will probably be a different one.

 

Tate with his brothers, 2015

If you liked this post, you might also like these: Dear Autism and The Things Autism Has Taught Me

Making Demands In The Name Of Autism

My son has autism. I am his advocate. I make sure he has the things he needs to be successful in school and in the community. Usually I can get what he needs by asking nicely. Occasionally I have had to beg and a few times I have had to become demanding. Once I even raised my voice. But I do not feel I have ever asked for anything that was unreasonable. Of course, that part is a matter of opinion.

Even though I do not feel I ever asked for anything unreasonable, I have not gotten one hundred percent of what I asked for either. I have never filed a lawsuit. Oh, I could have. Once, I found that Tate had been without his para support at school for a day because another child had moved into the district and she needed support too. Instead of hiring another para, Tate’s para was supposed to supervise both small children and basically be in two places at once. Another time Tate was left to wait for me to pick him up with no adult support. When I pulled up he ran between some moving cars, then dropped his artwork and chased it across the parking lot. He was six and his IEP said he was to have full support from drop off until pick up.  

But this post is not about IEPs or dealing with the professionals that specialize in our kids’ needs. This post is about making unreasonable requests or demands of people in our communities in the name of autism. In my opinion, a reasonable request is when I ask for a lid on a drink so my child does not spill. A reasonable request is asking for a few extra minutes in the bathroom because he has trouble with getting his pants unbuttoned and buttoned. Ramps, service animals, Paraprofessional support, visual schedules, and things like pre-boarding an airplane are reasonable accommodations in my opinion.

Schools are required by law to use accommodations and modifications for children with handicaps. Of course, businesses and organizations are also obligated to serve people with handicaps. Discrimination is illegal. But not everything we do not like is discrimination. I do not believe businesses and organizations should be required to jump through hoops of fire to prevent lawsuits. If they are making a reasonable effort to accommodate people with special needs then they should not fear the autism community. Recently there was an incident in the news about a mother of a child with autism requesting a hot meal for her child on an airplane. The mother mentioned that her child might scratch someone if she did not get a hot meal and the pilot landed the plane and the family was required to get off the plane. I think the pilot over reacted for sure. But he was within his rights as a pilot. The autism community was up in arms. Not everyone in the autism community thought the child with autism should be entitled to a hot meal but it seems the majority believed the airline employee should have done everything in her power, including giving away one of the first class passenger’s meals so the child with autism would calm down. I’m not so sure. Trying to put myself in the shoes of the flight attendant and pilot, I consider the rules and regulations I have to follow to keep my job. Trying to put myself in the shoes of the mother calming her child, I consider how awful it is going to be for the next few hours for everyone around us (including my child, of course) if I do not get her what she wants. I cannot be sure what I would have done in either situation.

I have a child with autism. I am sympathetic to children with special needs. I advocate for two constantly. Twice recently I have found myself in a crowd of people trying to hear the instructions being given while a child with autism screamed constantly. Recently I was on a cruise. I was listening (actually just trying to listen) to the procedure involved in abandoning ship if it became necessary. Does the screaming child have a right to be on a cruise? Of course! Do the parents of the child have a right to be participating in the activity I am involved in? Of course! Does the crowd of 300 people gathered for the ship’s safety instructions have a right to hear the safety instructions? Yes. We do. But we did not hear everything. Ironically, the bit I was able to hear was regarding handicapped people, women, and children, being given seats on a lifeboat first. We have come so far. We as a society do value the lives of those with disabilities. They are no longer locked away in institutions. Thank God! They are now included everywhere we go. And, they are often listed as top priority in procedures like this one. Most of us would not have it any other way. But at what point does the right of 300 people who need to hear, supersede the rights of the child with autism and the parents? Or do the 300 people all have to give up their rights anytime a child with autism is present? If the ship crew had asked the parents of the child with autism to remove her from the presentation, would they be threatened with a lawsuit immediately? What is the solution? 

People with disabilities are supposed to be given equal rights. It is the law. But are we asking for much more than “equal” for our children? Can we demand things in the name of autism that seem a bit unreasonable (or more than just a bit unreasonable) to the people around us? Can we demand a hot meal on an airplane when it is not a part of the procedure? Can we demand our child get a cheeseburger when we are dining at a Chinese restaurant? Can we demand our child go to the front of every line at theme parks in the name of autism? It is so hard on our kids to wait. But, what about typically developing toddlers? Isn’t it awfully hard for them to wait in lines too? Why don’t we bump all the two year olds to the front of the lines as well? Sometimes I am not sure we are asking for fair accommodations. Sometimes I believe the autism community is making requests and demands that are unreasonable, all in the name of autism. And sometimes I think we are getting a bad reputation for making unreasonable demands. I really do not want everyone around me to fear a lawsuit if Tate does not get what I ask for.

Just some things I have been thinking about. I would love your feedback. I’d rather not start a lengthy debate about hot meals on airlines as that has already been done over and over in the autism community and I think everyone is weary of it.