Pain, Communication, and Frustration

Tate, age four

I have often heard that people with autism feel things differently than we do. I do not know if this is true or how it could ever be measured and tested. However, I do know that my son Tate responds to pain differently than I do. Tate is my thirteen-year-old son, and Tate has autism. Tate cries occasionally out of fear or frustration, but I do not remember the last time he cried because he was hurt. I think he was still a toddler; but by age three he no longer cried when he was in pain. I know he feels pain but he seems to be able to manage his reaction to it. He has had many ear infections over the years and I just had to guess when to take him to the doctor. I have taken him when his ears were fine and I have taken him when his ears were horribly infected. I know when Tate has a sore throat because he drools and his voice sounds differently but until very recently he did not voice his discomfort. It is much like having an infant that cannot tell you when and where they hurt. Once, when Tate was in preschool, he stood on hot concrete with bare feet until the bottoms of his feet had blistered. The blisters were the size of quarters. He could not walk for two days after that but he never really complained about the pain. I know he felt the pain because he refused to walk but he did not cry or whine. Even when I know Tate is hurting, if I ask him he is almost always going to tell me he is fine. It is frustrating for me, and for him as well I would imagine.

One morning three years ago, when Tate was ten, Tate came to his Dad and said that his ear was hurting. I was still in bed when they came in to tell me. I was wide-awake instantly and so excited to hear about this ear pain. Of course I was not excited he was hurting but so excited that he was able and willing to tell us this time that his ear was hurting. What a difference this could make in our lives. The ability to communicate his needs would be life changing for us. And it has been; because since that day, he has  told us when he is in physical pain on several occasions. However, Tate still cannot talk to us about his feelings or emotional pain.

When Tate is upset, his face gets red and splotchy. He might stim a lot, or even hyperventilate, but he cannot communicate effectively about what is bothering him. I have to “read between the lines” usually. For example, if I announce that it will soon be bedtime, Tate might make a comment like, “I will play with this tomorrow.” and I notice his face is turning red. Then I have to guess: maybe he wants to finish this game tonight, before I make him go to bed. But, he won’t say, “I am almost done. Can I finish this game before I go to bed?” He won’t argue with me about bedtime as my other children would either. I would LOVE it if he would argue with me about bedtime. That would be a blessing in our world.

I have tried and tried to make Tate understand that he has to TALK TO ME so I know what he wants and what he is upset about. I believe he just doesn’t understand why I don’t already know. It is the whole “theory of mind” thing I suppose. Tate does not know that I cannot know what he is thinking and he doesn’t understand I am not having the same thoughts he is having. If Tate is going to tell me a story, he doesn’t set it up. He might begin in the middle, thinking that I already know the setting and the background that I need to know to understand what he is talking about. It is like reading a book and starting on chapter five when I am trying to understand something he wants to talk to me about. Often he gives up out of frustration. If I ask him questions he might become irritated. If I misunderstand and ask him to repeat himself, he will usually say, "never mind" so I do not get a second chance to decipher the message. It is similar to playing charades sometimes but I do not even get the motions. I get broken sentences and partial thoughts that I have to string together like a detective. A friend recently asked me some questions about Tate. I described how hard it was to communicate with Tate, especially when he is upset. She likened it to trying to communicate with someone while each of you are standing on opposite sides of a great canyon, both people able to see the other one but barely able to hear the other. I thought that was a pretty good illustration of how it feels to communicate with Tate sometimes.

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To the girls who mocked my son in the mall

Tate and Sydney at the mall 12-19-14

Last evening as I walked through the nearly empty mall with my two youngest, you five girls were behind us by several yards. We had just seen a movie and were in great spirits. We were walking to meet up with four of my older children. We stopped to take a photo, at one of those cutout scenes where you stick your faces through the holes. I caught sight of you as we took our photo, walking and giggling and having a good time. I have had teenaged girls and know how much fun they can have together in a mall. I noted to myself that you were a lively group but certainly not threatening in any way. You were walking faster than we were and the gap between us was closing. I turned from snapping our photo and we continued down the hall. My son fell behind a few steps as he was adjusting his earbuds. He was listening to his music like a typically developing 13-year-old boy might do in a mall. Though if you could have seen his playlist you would have realized he is not a typically developing 13-year-old boy. He was probably listening to Disney tunes, the muppets, or a preschool sensation called The Fresh Beat Band. You probably did not notice he was “different” until you saw him run a few steps to catch up to me. He always runs on his toes with a very awkward gait; and I’m sure that a 6’3” young man running on his toes looked pretty ridiculous to you. The mall was empty enough for me to hear your innocent girlish giggling turn to that of a contemptuous kind of laughter. I knew before I turned; but I could not stop myself. I turned to look and saw one of you mocking my son. You were running on your toes and flailing your arms. My son and his little sister kept walking, not noticing that I had turned to look behind us. They both have special needs and were oblivious to the change in my demeanor. I took about three steps back toward you, and your forward pace slowed. I must have looked very intimidating all of the sudden. I had gone from happy and quietly content to irate in a fraction of a second. I can only imagine the look I had on my face as I took those few steps toward you. I did see the looks on your faces. Your laughter stopped. I saw guilt and I saw your faces redden with embarrassment. You were caught. You thought you’d have your laugh at my son’s expense and we would not notice. Or perhaps you did not care if we noticed, but you certainly did not expect me to turn and call you out. I cannot remember my exact words but I believe they were, “My son has autism. I sure hope you are not making fun of him.” Your stuttering and stammering out, “We’re not. We’re not making fun of anyone.” caused me to doubt myself for a split second; but then I remembered I had seen one of you, the girl on the far left, copying my son’s movements while all five of you laughed. I said no more, and turned back toward my kids and caught up to them, thankful that my son had his headphones in and thankful that he probably would not have understood much of our exchange if he had been listening anyway. As we all continued down the hall I had to remind myself that all five of you are just kids, probably very nice girls most of the time. One of you were impulsive enough to make fun of the differences you saw in my son and the other four were weak enough to go along with the joke. I had to remind myself that you all five had families that love you as much as I love my children and you all five may have issues of your own to deal with. And perhaps you really did believe that making fun of someone else is just innocent fun and we would have no idea it had even happened.

Perhaps you go to a school where the kids with special needs are kept separate from you or perhaps it is acceptable amongst your peers to laugh at their differences. We are from a small town and my son Tate goes to a small school. He has peers who accept him and do not make fun of the way he moves or talks. They know he is different and help him to fit in. They do not laugh at him or belittle him. As a matter of fact, had some of them been with him last night, they would have probably said more to you about your behavior than I did. 

I have to admit that I have no idea if turning and calling you out was the right thing to do or not. I did not know how to react. You see I have never seen anyone mock my son before. In fact, in thirteen years I cannot remember him once being made fun of. Perhaps there have been times and I have just not caught on like I did last night but I like to think that you are the first. How does that make you feel? You broke a thirteen-year streak for us.

If statistics prove true and all five of you grow up to become mothers, chances are that one of you will have a child or a grandchild with a disability. I do not wish that on your child or grandchild, but if it happens, I actually hope that you get a thirteen-year streak without bullying. As a matter of fact, I hope you have an even longer one. And even more importantly I hope that if your son or daughter, grandson or granddaughter, are ever bullied that you will not be able to think back and remember the time that you yourself laughed at a child with a disability and caused a mother pain. The burden might be too heavy for you to bear.

If you would like to read more, try this post: Baldwin Bulldogs class of 2020

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Tate age 12, Sydney age 10

Sydney, Age Six

Once in a while something triggers an old memory that I had all but forgotten, something I would have blogged about back then if I had been blogging at the time. Tonight a comment from a Facebook friend triggered one of those memories. I will always associate this Facebook friend with this particular event.... It was the last day of first grade for Sydney, which coincided with the closing of our small community’s school. It had been quite a year for everyone involved in the education of Sydney as we all tried to manage her behaviors that come with having Fetal Alcohol Syndrome (FAS) and Attention Deficit Hyperactivity Disorder (ADHD). Sydney’s first grade teacher was extremely talented and had taught much of the year with Sydney wrapped around her legs, literally. Sydney’s teacher and I had asked many times for increased services for Sydney without the results we hoped for. Through no fault of her own Sydney was not able to behave herself. There was no keeping her in her seat. She spent most of her day wandering the room and pestering the other students. There was no amount of discipline and no incentive program that could help Sydney control her impulses at the age of six and she was not yet on a medication that made a real difference.

 

That last day of school there was to be an assembly to hand out awards, recognize students and staff, and say goodbye to our small community school. Emotions were running high and tears were flowing. Patrons were both sad and angry because our school was closing. A large crowd gathered in our small school’s gymnasium. Teachers were seated in chairs at the front of the crowded building, while approximately eighty students from grades one through five were seated on the floor. Parents and community members sat in rows of chairs or stood, and the speeches and awards began. Almost immediately Sydney began to wiggle and I began to sweat. What were they thinking sitting her in the midst of all those children without an adult? Sydney’s wiggles turned to bouncing and swaying back and forth. Next, she was putting her hands on the children close to her and trying to engage them in a regular game of tag as they swatted at her like a gnat that could not be dissuaded. I was sick to my stomach. I could not reach her or get her attention without creating a bigger scene than she was making. The teachers were also unable to get to her easily without moving a lot of students. Then, just when I thought I could not be more embarrassed, Sydney began crawling around, weaving in and out of the children, distracting them and causing them to have to shift and move as she crawled around them and over their laps. The seconds felt like minutes to me and I shifted in my seat unsure of what to do. I was wishing the floor would open up and swallow me. I recall hoping that everyone was remembering that I had six OTHER children that DID know how to sit still and they were not judging my parenting on the behavior of my youngest child. I desperately wished I could whisper to the person sitting next to me, “Remember, Sydney was neglected for the first year of her life and she has many excuses for her behavioral issues. The Smiths are really good people. Pass it on.”

I was hoping that Sydney would eventually crawl over to the edge of that crowd. Maybe an adult would be brave enough to grab her and put her in a headlock until I could get out of the crowded seating where I was confined and take possession of my little angel. But as luck would have it, Sydney wormed her way further and further from me, toward the front of the gym jostling children all along the way. And then she was UNDER the chairs the teachers were sitting in, slipping between the legs of one chair after another, right up front where every eye was focused. If anyone had missed Sydney’s performance amongst the children, they surely were not missing it now. I cannot remember now how many adults tried to coax Sydney out from under their chairs as she squirmed her way down the line. The librarian, Lisa Myers, who had a great relationship with Sydney and genuinely liked her for who she was, lured Sydney out from under the chairs and onto her lap. While I was trying to teleport a message to Lisa that went something like, “Get a vice grip on her or she’ll squirm right out of your arms and escape!” this gentle lady was holding six-year-old Sydney lovingly, cuddling her, whispering softly to her, rubbing her back, smiling down at her with genuine affection, and keeping her calm and quiet. When that assembly was over I couldn’t get to Lisa fast enough. I thanked her and I have thanked her again since that day. Lisa did not just rescue the children that Sydney was distracting that day. She did not just help the adults to refocus on the speaker instead of focusing on the chaos my little girl was causing. Lisa showed me an example that I will never forget. She picked up a child that many of the adults in the room (myself included) probably wanted to take out and paddle. And instead of frowning at her, sternly talking to her, or telling her how disappointed she was in her behavior, Lisa lavished Sydney with affection and smiles.

There are two morals to this story…

The first being: The adults in Sydney’s life have often expected more of her than she can give. That day we sat her in the middle of a crowd of children, without an adult to directly supervise, or medication, and expected her to behave like her peers. When Sydney was unable to behave as her peers, I became embarrassed and I was ready to punish her, or at the very least lecture her. Sydney was doing the best that Sydney could do that day. Lisa recognized that. I love the quote by Albert Einstein, “If you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

And the second: Lisa did not know how deeply her kindness toward Sydney would touch me. We can be sure we have influence on the people around us. Whether it is good influence or bad influence is for each of us to determine. When we leave our homes each day we do not know what kind of lesson we might teach someone. You never know who is watching and what impact your example will have on them. The ripples in the water sometimes go far. It takes only minutes to create a great long-lasting memory. It also only takes a minute to wreck someone's whole day or worse. 

So there you have it. The old memory was triggered yesterday when Lisa told me that my kids reflect my hard work on their behalf and that I am a great mom. What she did not know is this: Once in a while when I am ready to throw my hands up in the air, jump up and down, and holler at my little ADHD princess, I think of Lisa and how gentle she was with Sydney that day and instead of the jumping and hollering I am able to pick her up and hug her instead.

For more about Sydney, read Teaching Sydney (Or Trying To)

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I'll Love You Forever

Tonight I ran across a book on my youngest child’s bookshelf. She has outgrown picture books and is reading chapter books now. I am sorting books and deciding which ones should stay on the shelf, which ones I’d like to put up for future grandchildren, and which ones I’ll be donating. This book will be staying on the shelf. The title is, “Love You Forever” by Robert Munsch.

I remember the first time I ever read the words, “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.” and choked back the tears. My oldest child was a baby and a friend showed me the book “Love You Forever.” I shared it with friends after that, daring them to read it without crying.

Twenty-five years ago, reading “Love You Forever” for the first time, I did not analyze what it was about the book that caused my tears. I believe I probably wept at the thought of my baby growing up and leaving home. Tonight though, as I held that book, I had far more insight and a considerably larger amount of experience than I had the first time I read those words. I thought long and hard about my children, who they used to be and who they have become. Tonight, sitting in the floor of my daughter’s bedroom, I was looking back, not just forward. Twenty-five years ago, it was very hard to picture the man my baby boy would someday be. It happened though. We blink and they are grown. Four of my children are young adults who I am very proud of, but I do miss the babies they once were. Three of my kids now live in another state. The drive to put the ladder up to their windows each night so I can sneak into their rooms is becoming harder and harder to manage.

Munsch did a great job of depicting a parent’s tenderness for their child at all stages of life, during both serene moments and tumultuous ones. Although Munsch’s book was published in 1986, the whole concept of “you’ll always be my baby” and “I’ll always be here for you” is not a new one for moms and dads. I imagine that concept could be traced all the way back to the very first mother and her children.

Tate and Sydney

Although it had been a while since I last read “Love You Forever,” I really did not need to look at the words as I thumbed through the pages. I’ve read it so many times to all of my children over the years. As always a lump formed in my throat and the tears welled up in my eyes. However, this time I was not thinking of the baby on my lap who would someday grow up and leave home, nor was I thinking of the adult children I miss who have left home. Ironically I was thinking of my two youngest and yearning for the thing I used to dread. If only they could grow up and leave home one day. I want for them what the adult children now have: college, jobs, a car, friends, and the ability to live independently. Tate has autism and Sydney has Fetal Alcohol Syndrome. What does their future hold? Where will I lean the ladder when I need to sneak in to their rooms and rock them? Who will rock them when I no longer can?

If you liked this post, you might also like one entitled, "Don't Blink."

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Kindness and Mistletoe

I recently entered a short essay in The Mighty’s thankfulness challenge. It received a whole lot more attention than I ever dreamed it would when a representative of People Magazine saw the story and called. My essay described some children who have been exceptionally kind to my son Tate and I thanked them in a public way. Tate has autism and it is hard for him to make friends for several reasons, one being that he just does not understand how relationships work. Tate does not understand social reciprocity but he is making some great gains due to constant and consistent teaching from home and school. A lot of that teaching has come from his peers. They are teaching him about friendship and kindness. I wanted to spotlight those kids for their kindness to Tate. 

Kindness. Most of us know what it is even at a young age. It does not have to be defined in words but it is taught by example. Kindness does not just come naturally to small children. There are always exceptions to the rule, but most children are a reflection of their upbringing. In my experience, usually, the kindest kids have the kindest parents. 

Tate has been blessed with many kind classmates and a few of them have even taken a special interest in him. They eat lunch with him. They go out of their way to speak to him and consider him a real friend. If I had to describe these kids in one word I would probably pick the word, “kind.” So, today when I got a message from a representative of "Newton Kindness" saying two of Tate’s lunch buddies were nominated for a kindness award they offer each year, I was thrilled! But as I read on I saw that this representative also wanted to nominate Tate, and that left me slightly confused. Tate has been the recipient of his peers’ kindness but had he ever really shown kindness to them? He has autism, after all. I thought about it for a few moments. Tate is a good kid. He does not make any trouble. He is quiet. He is not demanding or mean spirited. But, would I use the word “kind” to describe Tate? It only took me a minute or so of pondering and I realized that I had given the word kindness a very small definition. Because Tate cannot DO so many things that the rest of us can he does not always show kindness the same way the rest of us do. Tate cannot show kindness by being a peer model for a classmate who is lacking in social skills but he is a very kind young man. He demonstrates it every day. He gives without expecting anything in return. He forgives easily when he has been wronged and it takes a whole lot to make him angry. His lunch buddies have described him as kind and a good friend who likes everyone. 

It has taken Tate a lot of hard work to get where he is. If you can liken learning social skills to learning to swim, think about taking those swimming lessons in a calm, heated, indoor pool with instructors and floaties. Then think about taking those swimming lessons in a muddy, cold river with a strong current and an instructor that is speaking a different language than you do. It would take so much longer to learn to swim if you did not have all the supports and you did not understand the instruction. When a child with autism is put into social situations they must feel like they are in that muddy river trying to learn to swim against that current. I've been on the sidelines shouting encouragement but I must have blinked and missed the part where Tate learned to "swim." His biggest encourager sometimes does not see the little milestones. 

After my light bulb moment I was a bit aggravated that I had even needed a minute to ponder whether or not Tate could be described as kind, because just yesterday he had shown me just what kindness really looks like. I took Tate Christmas shopping at his insistence. He had less than twenty dollars, earned one dollar at a time by doing one of the only jobs he has mastered, unloading the dishwasher. He was on a mission! He wanted to buy mistletoe and a gift for his brother Levi. As we shopped and talked, he added to his list. He wanted to find something for his three sisters as well. Have you ever tried to shop for four people with twenty dollars?  We got everything he wanted except the mistletoe. I have no idea where to find mistletoe. I quizzed him about why the mistletoe was so important. He finally revealed to me that the mistletoe was going to be his gift to his dad and I. Tate planned to put it up so we could kiss under “the mistletoe.” I was so touched and tickled at the same time. It took him over two weeks of emptying that dishwasher (which is not a preferred activity) to earn enough money for those gifts and he never batted an eye about spending it on others.

Note: I know that the mistletoe has got to be one of Tate's newest movie related interests. He has been watching lots of Christmas movies and has a sudden interest in little details like silver bells and mistletoe. Anyone know where to find mistletoe in the middle of Kansas?

To see the People magazine interview, go here: A Lesson In Kindness

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