Tate's Toothache and My Pity Party

I try hard to be an encourager. The world needs more encouragers. I especially try to be positive when I am speaking to parents of children with autism who are coming behind me. Those with kids younger than Tate need to know that it is not all doom and gloom after the autism diagnosis. But sometimes it is hard. I was born a pessimist. Pessimism comes naturally to me and “looking on the bright side” is something I have to work at. Think Winnie the Pooh’s friend Eyeore and you will have an idea of the way I often think. I have to fight through that gray little rain cloud that is right over my head. It’s just who I am. However I am also someone who has been able to overcome some of that because of lessons Tate and Sydney have taught me. There really are blessings to be found in the face of adversity.

I don’t sit around and feel sorry for myself too often. I simply have too much to do. But yesterday... Yesterday I had a pity party. In attendance were myself, and Tate from the future. He was with me as I sat and cried. He was a middle-aged man and I was a bent old woman. I was still trying to help him brush his teeth and find his shoes. I was still helping him in all the ways a mom helps her child. Her young child. Her five-year-old child. And he was six foot three inches tall.

My pity party began in the dentist office bright and early Monday morning. We were there because I had “guessed” Tate had a toothache. He cannot / will not tell me when he is in pain. He does feel pain. I am sure of that. On Friday Tate made a few references to teeth. They were out of place and seemed odd. But Tate has autism. Let’s face it. Much of his conversation on any topic is odd. Saturday morning Tate texted me that I should take his brother to the dentist to get a cavity fixed. I thought, “Oh, Tate is trying to make a joke.” He hates dentists and he thinks he’s sort of insulting Levi by saying something like that. It’s Tate’s way of teasing. But then there were several more references to the dentist. By now I should have caught on. And then Tate did something Tate VERY rarely does. When I quizzed him about all the references to the dentist and asked him what was up. He admitted that he MIGHT have a problem with a tooth. He asked for a Tylenol. That’s a pretty big deal around here. First thing Monday morning I called the dental office we use and took Tate right in. I like all the staff there. The dentist Tate normally sees was out and we saw another. There, explaining to the dentist that my son appeared to be a young man but she should probably try to communicate with him like she would a five or six year old, my eyes began to leak real tears. I went on to explain that Tate does not tell me when he is in pain so I have to guess. As the dentist investigated to find the problem, I sat and thought. I remembered that when each one of my children were small I had to be vigilant and know when they were hurting based on behaviors. It’s just what good moms do. As my children aged they could tell me when they hurt and eventually they could take care of themselves. My four oldest children are adults. They make their own doctor appointments and bandage their own wounds now when necessary. They don’t call home to tell me about their minor illnesses. They don’t need me in that way anymore. Tate is not there though. Tate will never be there. Tate will always need me and there will come a day when I am not there. I’m 38 years older than Tate.

My pity party was not just about Tate not growing up on the inside as he grows taller on the outside. It was about me. When my kids were little and they hurt, I hurt too. A mother’s empathy for her children can cause her to hurt physically sometimes. As they aged and they were able to take care of themselves some, my empathy for their pain was not nearly as intense as it was when they were small. Over the weekend when I thought Tate was hurting and he was relying on me to identify the problem and help, I hurt for him. Because Tate is never going to grow much older on the inside and be able to mature like his siblings did that leaves me forever stuck feeling the kind of empathy pains for him I would have for my toddlers.

I love the thought from the Bible about everything having a season. Probably the happiest time of my life was when my kids were all small. But now it is time for them to grow up and for me to enjoy them as adults. They will be giving me grandchildren in just a few years. And I will still have an adult sized six-year-old to care for. Life’s not fair. So yesterday I had an emotional meltdown. Several times in the afternoon I broke down and sobbed for the Tate I will never know. The man he will never become. I felt really sorry for myself.

Today is a new day. His sore tooth turned out to be related to a broken wire and twisted bracket from his braces, not a cavity. It’s fixed and his pain is gone. My worries about his pain are gone and my spirits are lifted. Today I am not sitting with the future Tate dwelling on what will never be. Today I dropped my sweet son off in front of his school and as the car door closed I said, “I love you Tate.” I expected to hear, “I love you too.” Instead I heard, “I know.” As I pulled away I smiled ear to ear, happy that he knows he is loved.

For more about trips to the dentist, click here: Cleaning, Filling and Straightening the Teeth of Autism

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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It DOES hurt!

I've been up for a whole thirty minutes this morning and I have not stopped smiling. Ironically, my smile is a direct result of Tate's discomfort. Please, if you have not read my previous blog post “Does it hurt?” from April 25, 2012 then take a look.

Tate is an early riser (and that is an understatement.) Many people with autism require little sleep, or perhaps it is just that they struggle with chronic insomnia. Tate is almost always up by 6:00 and sometimes it is 5:00 when I hear him up. Most mornings Shawn is up early too. I am NOT an early riser and that is an understatement. I think 9:00 would be the perfect time to crawl out of bed. Of course, this rarely happens. The past couple of years I can leave Tate in a room unsupervised. Sydney is another story. There is no telling what she will get into or break if left unsupervised. But I did not start this blog post to talk about how much sleep I am getting…..

This morning, Shawn woke me up earlier than I like with the news that Tate’s ear was hurting. I was wide awake instantly with questions. "How do you know?" “Did Tate TELL you that?” TATE TOLD SHAWN THAT HIS EAR WAS HURTING.  This is a HUGE milestone. If you read my earlier blog post “Does it hurt?” or if you know us well, you will know that Tate has had MANY ear infections in his life and he has never complained of pain. He won’t ever tell us when he is hurt or sick. We have to guess. 

The ear pain this morning is from swimmer’s ear, I am certain. We put in an above-ground pool this summer and spend hours in it every day. Sydney has had swimmer’s ear this summer and got drops for it last week. I have been wondering if Tate had any trouble with water in his ears but he wouldn’t talk to me about it when I inquired. Levi and I have been having trouble getting all the water out of our ears sometimes but our ears have not hurt. 

Tate’s favorite thing to do in the pool is flip or somersault. He practiced for days and sometimes will somersault over and over, until I wonder if he is using it as a repetitive behavior to stim. I give him the benefit of the doubt and hope he just loves the fact that he mastered a new skill. I like to use denial sometimes to help me through the day. haha The somersaulting gets water in my ears worse than anything else so I don’t do it much. Tate is doing a lot of really cool things. He loves to go underwater and Shawn and I have marveled about how long he can stay under. I think it is also because he can ignore pain to a degree. I cannot stay under as long as Tate can. He could not go under much until he learned to use a face mask. Levi and I have to use a nose clip or a facemask to swim under water. Tate was not interested in trying on the facemask at the beginning of the summer. Once he decided to try the facemask he wanted to spend all his time under the water. He is having so much fun in the water. Tate has always been big for his age and heavy. This past year he got a lot taller and slimmed up but this summer he has actually started to look skinny. I think all the exercise in the pool has helped. 

In the pool

If you see me around today, note the smile on my face. It is not actually because Tate is hurting, but because Tate acknowledged that he is hurting so someone could help him with it. Maybe this is just a beginning and Tate will be telling us in the future when he hurts or feels sick. I am on cloud nine. 

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Does it hurt?

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 Tate responds to pain differently than I do. 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 at 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 he does 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. I do not know why.

When Tate is upset, his face gets red and splotchy. He will stim a lot, and even hyperventilate but he cannot (or will not) communicate about what is bothering him very effectively. I have to “read between the lines” usually. He might make a comment like “I will play with this tomorrow” and I notice his face is turning red. Then I guess: he wants to finish this game tonight, before I make him go to bed. He won’t say “I am almost done. Can I finish this game before I go to bed?” Or, he might say: “Sydney is playing with that car” when he should say “Sydney just took that car out of my hands and I want it back.” I have tried and tried to make him understand that he has to TALK TO ME so I know what he wants and what he is upset about. He just doesn’t understand why I don’t already know. It is the whole “theory of mind” thing again. He doesn’t know that I don’t know what he is thinking and he doesn’t understand that I don’t have the same thoughts he is having at the same time. He does not understand: If I didn’t SEE Sydney stealing the car from him then I don’t know it happened and he has to tell me. He just doesn’t “get it.” If he 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 ten 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 and then I never get to know what he wanted to tell me. He will NOT repeat himself and he will NOT work at helping me to understand what he means. 

I got off topic…. Back to the pain threshold:

Sydney does not have autism but Sydney’s pain threshold is extreme. When she was a toddler and learning how to walk, she fell down and busted her lip almost daily. She never flinched. I would see blood and wonder how she could stand it but she did not seem to feel a thing. I taught her to say “ouch” when she fell and I had to teach her to come and get me if she saw blood. Even after she learned to say “ouch” when she fell she still didn’t seem to care that she took a hard fall. I have never known anyone as tough as Sydney. She can take quite a tumble off of playground equipment or bump her head really hard and not even stop to notice. She gets goose eggs and bruises and doesn’t even know where she got them in her rough play. However, she has become quite a drama queen about blood now. She has learned to love attention and she plays up the smallest blemish these days. If there is something more exciting going on around her then she still ignores blood though. Ironically enough, running a comb through a tangle in her hair will send her through the roof. I cannot figure that one out. Ha!

Tate and Sydney 

Tate and Sydney can both ignore cold to a certain degree too. When I am freezing and telling them to bundle up, they want to go outside without a jacket.  Sydney has no “meat on her bones” so she almost turns blue before she wants to come in out of the cold. If she plays in the snow she will stay out and ignore cold fingers. I have to monitor and keep dry mittens on her. I've even put hand warmers in her pockets or inside the mittens with her fingers so she can stay out longer. Twice I was almost sure her fingers were frost bitten when she was little. As we held her hands under room temperature water trying to slowly warm them she was screaming. So... She does feel pain, eventually. Now in the winter I plug in a heating pad when she goes out and call her in once in a while to warm her hands. She just cannot monitor the cold and know herself when she's had enough. She can either ignore the pain or she does not feel the pain until it is intense. I am not sure which. 

And speaking of temperatures, Sydney loves hot water. I will not, and cannot, make her bath as hot as she wants me to. We have the same conversation every time. Sydney says, “Make it really hot, Mom.”  I say, “Sydney I cannot run a bath any hotter or you will burn.” When I run water that would be just right for any of the other kids, she complains that it is cold. I suppose it is just like any of her other strange sensory needs and it all comes from her birth mother’s alcohol consumption. I hope she outgrows the love of hot water soon though because I may never be able to allow her to run her own bath. I can just see me following her into the bathroom when she is in high school to test the water (NOT). 

If you liked this post, here is one similar: Under Construction

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