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. 

Autism and Empathy

Not too long ago I accompanied my dad to a doctor appointment. It was wet and very cold outside. The parking lot and sidewalk were a bit slippery. As my dad and I were walking into the building a car pulled up, and a very frail, elderly woman got out of the car. She crept slowly toward the front door, one very tiny step at a time. She looked like she might topple over, as she was so unsteady on her feet. I stepped toward her and offered her my arm. She gladly took it. I could see she was not going to make it far without some help, even after we entered the building. I walked her very slowly to the office she needed. She was afraid her husband would not know where she had gone so I walked back to the front doors to let him know she was waiting in the office. I waited for what seemed like a long time. Then, I saw him, slowly approaching the front door of the building. This man was bent and decrepit, walking with a cane. Every step was almost painful for me to watch. I stepped through the doors, back out into the cold, and offered the man my arm. He was just a bit gruff, and declined, indicating he had the cane. I explained to him his wife was waiting at the end of the hall in the office. He thanked me and told me his wife never would have made it without help down the hall. He said he always helped support her if she had to walk more than a few steps. This elderly man was barely able to keep himself upright, and moving as slowly as I’d ever seen someone move, yet he was normally his tottering wife’s support! I walked with him to the office. I chatted with both of the older folks for a few more minutes. As I left, I stopped and quietly urged the receptionist to use a wheelchair to help the woman get back to her car.

I have thought about those folks several times since then and wondered how they are doing. They appeared to be long past the ability to live independently. I hope they are safe and well, and together.

What made me stop and offer my arm to the woman? What made me return to ask her husband if he needed help and then almost physically ache when I saw how difficult it was for him to walk? What made me press the receptionist to help them with a wheelchair? What makes me wonder about them from time to time? It’s a kind of caring concern called empathy. Having compassion for someone and being able to put yourself in their shoes motivates people to stop and help others. Those two elderly people touched my heart. But where does empathy come from? Is it something that we are born with? Is it something we are taught? Does it grow gradually over years, starting small and then building?  

My four boys. They are alike, yet so different.

I’ve discovered a few things about empathy since I started raising kids. One of those things being: how it is acquired. Years ago I might have argued that empathy will not come naturally to children and has to be taught. And then my second son was born. From his toddlerhood on I saw a kid whose heart was tender and caring. He wanted nothing more than to make others happy. If he had a cookie he’d give it away. While I was trying to teach my other children to share, I was trying to teach this little guy to stick up for himself. I remember showing him that he should break his cookie in half and give half away but keep some for himself. He is one of the most caring people I have ever met. But I cannot really take credit. For him, it just seemed to be there from the beginning. My other children did have to be taught empathy and they have all become such caring and wonderful people. It took a little longer for some of the kids to learn to put others’ needs before their own than it did for the others. Being the parent of seven I saw a lot of different personalities and was amazed often at how differently they all learned and needed to be taught. Sometimes I just wanted to “knock” some empathy into them, showing that I myself needed to become quite a bit more empathetic at times.

I said all of the above to finally get to this. One of the characteristics of autism is aloofness, the lack of interest or concern for others. It is also hard for a child with autism to generalize the things they learn. In other words, something a child learns in one situation will not be applied in another setting. So teaching Tate about compassion and empathy has been very hard. I see progress though. He sometimes asks me if I feel better if he knows I have an ache or pain. He has started carrying the laundry hamper down to me when it is full without being told because he knows it makes me happy and it hurts my back to carry that full hamper. He has learned to try to listen to his friends at school when they talk to him because he knows it is important to them. Once in a while Tate offers to share things like cookies with his siblings and that is fairly new. All these things have been taught to him individually. I could not just explain the golden rule to him and expect him to apply it to his life. I have to teach it to him for each scenario I’d like to see him use it in.

Tate will do what he is told usually. He does want to please people. Like most people with autism he is a rule follower. He just has to be told the rules. The hardest part of teaching him to help others is getting him to recognize, without being told, what someone’s need is. Being young is part of it of course. Probably a lot of thirteen-year-old boys would walk right past an elderly woman who could have used their assistance because they do not realize what is needed. But there are many things Tate should have mastered a long time ago that he still struggles to understand.

For example: For years we have worked on the etiquette that surrounds doorways. It just seems to come naturally for his classmates to catch a door that is about to close and then hold it for the next person to grab. I don’t imagine anyone has ever had a door holding lesson for any of those kids. Instead they were taught to be kind and polite as a general rule and have begun to care for those around them and they act on those feelings throughout their day. They would never consider letting a door slam on a classmate. They can think about how that might feel and empathize with the one behind them.

When Tate comes to a door, if another person is holding it, he just squeezes through, never reaching to help with the door. If he approaches the door at the same time as another person he never offers to open it. He waits for them to open it for him. If he did have it open and another person was right behind him he’d just let it fall closed. He wouldn’t wait for them to reach out and grab it and he certainly wouldn’t hold it open for them. It is not that he is UNKIND. It is just that he does not think about being KIND. It does not seem to occur to him. Tate’s teachers and schoolmates have worked with him on this type of etiquette a number of times over the years and so have I. I remind him lately in the mornings before he exits my car to hold the door for the student behind him when he enters the school building. So, he has started trying to calculate his entry into the building so no one is around him at all. He slows his pace if someone else is walking up so he won’t have to try to figure out which of the etiquette rules applies. All these things that everyone else learns easily are still a mystery to him.

Tate might be able to quote the golden rule, but he needs to be taught how it applies in every situation individually. And he won’t just learn it by example. He has to be taught with direct instruction. We can teach him to hold the door for someone, teach him to share a package of cookies with his siblings, teach him to be attentive when his friends at school are talking to him, and teach him to take turns with a video game, but when a new situation comes up, one he has not been taught about before, he probably will not step up and behave as if he cares about anyone’s interest but his own. There will be literally hundreds, maybe thousands of things he will need to be taught. It becomes more evident to me every day.

This morning, my husband and I went out for breakfast. We finished eating and were just visiting when my husband noticed there were a lot of people in the lobby waiting for tables. So, instead of lingering at the table, making others wait longer, we jumped up and gave up our table. That is not something anyone had specifically taught us as children. We do it because we want to be kind and compassionate. We want to treat others the way we would want to be treated. Empathy comes naturally to us now. We have generalized that golden rule to all situations throughout our day. Can you imagine what it would be like if you could not generalize the things you learn in one situation and apply them to another? Can you imagine what it would be like if you had to be taught what was expected of you in every situation you might run into? Can you imagine what it would be like if your family were constantly becoming exasperated with you for not doing the right thing when you do not even know what the right thing to do is? People with autism are not necessarily rude or uncaring. Sometimes they appear rude or uncaring because they just do not know what is expected of them nor can they figure that out based on similar experiences. And so I teach empathy. And I explain empathy. And I have empathy for the one I am teaching empathy to. He is like the elderly lady I helped down the hall in so many ways, and I am like the man. Tate needs my support and guidance to make it a short distance, yet I am wobbly on my own proverbial feet at times. I can drive him right up to the door of empathy and I have to hope others are there to offer him their arm or even a wheelchair and help him make it down the hall. 

You might also like: Kindness and Mistletoe
And.... I wrote another blog post expanding on the door thing: It's not that complicated!