Cleaning, Filling, and Straightening the Teeth of Autism

Going to the dentist can be very stressful for people with autism. The noises and smells, the poking and prodding, the bright lights that shine in your face, while you are tipped back in a chair that changes heights, can all be over stimulating for sure. We went this week and Tate got his teeth cleaned. He is finally tolerating it all very well and I can give most of the credit to the magnificent dental hygienist who cleans his teeth and a team of dentists who are so patient and kind.

Tate’s siblings went for a “happy visit” to our dentist when they were about five and the dentist just sat them in the chair and counted their teeth. After that, we would start going regularly for cleanings. Tate’s first visit did not go well. He was uneasy in the chair and panicked when it laid back. He would not hold his mouth open and gagged anytime the dentist tried to put anything in his mouth. I was not surprised. I wondered if he’d ever be able to see a dentist and what we would do in the event of a cavity. For that matter, how would I know if there was a cavity? Tate did not tell me when he was hurting. He did not have the ability to communicate to me when he hurt. He often had terrible ear infections as a toddler but I never knew until there was a fever. It was always a guessing game for me. Sometimes I took him to the doctor suspecting an ear infection, and there was nothing wrong and sometimes the doctor would say, “OUCH, he must be in so much pain!” And, Tate never said a word or indicated to me that he was in pain. But I was talking about teeth…

I was able to brush Tate’s teeth at home but usually had to get him in a headlock to do a very good job. I did not accomplish the headlock and the good job every day. If I handed Tate the toothbrush he would rub it on a couple of front teeth, spit, toss the toothbrush toward the sink, and call it done. He actually does not do much better than that now, at age 12. I cannot still get him in a headlock and I have to stand on a stepstool if I am going to help him these days. He is so tall!

That first time in the dentist chair at age five, was a disaster, but all was not lost because of an amazing dentist with some great ideas. The dentist sent us home with a little mirror on a stick and told me to “play” dentist with Tate. He told me to get a sturdy chair and practice reclining him in it and putting the mirror in his mouth until he could tolerate it without gagging. I did that several times over the next few months and Tate became tolerant of it. The next trip we made to the dentist went very well.

HOWEVER, the first time Tate had a cavity we were back to square one. I believe he was seven years old. The visit to try and fill the cavity was disastrous. So, we rescheduled and arranged for an anesthesiologist to put Tate under so the dentist could fill two cavities and get x-rays. It was expensive but it did not look like there would be any other way.

Getting that filling was quite an experience. He had no idea what was going to happen and not enough receptive language for me to really explain it to him. When we got to the dental office I told Tate he would be taking a nap in the dental chair and I pulled out a new DVD and his little DVD player. Tate was elated. He climbed right up into the chair and started his movie. They gave him a shot almost right away. It must have hurt ‘cause he hollered, but he did relax right away. He did not even flinch for the IV. They wrapped him tightly in a blanket and taped his eyes shut and then it was time for me to leave. I hated walking out of that room. I was banking on him not remembering anything but later that day he told me several times that he had bad dreams while he took his nap at the dentist and “they moved his teeth all around.” It probably felt like they had. They filled two cavities, removed two baby teeth, put sealants on his molars, took xrays, and plaster impressions for an orthodontist. They did it all in 90 minutes. Coming out of the anesthetic was rough. He kept bursting into tears and saying, “I’m so sad.” He insisted I kiss him so I kissed his cheek. He said, “No! Kiss my mouth.” His breath about knocked me down but duty called. HA

The plaster impressions they took that day were sent to an orthodontist. Tate’s teeth were actually so crowded that some were coming in behind others, but I thought any notion of Tate being able to handle braces in his mouth was absolutely ridiculous. I did go to a consultation with an orthodontist who assured me that he could put braces in Tate's mouth, move his teeth, and do it without overwhelming Tate (or his mother). We found that the orthodontist was just as incredible as our dentist. Tate was amazing. He did very little complaining and handled much more than I ever dreamed he would be able to. We went slow and did a minimal amount of work on the teeth but it made all the difference. The braces were worn for about a year, while Tate was in second and third grade. His under-bite was fixed and his teeth do not overlap like they once did. We found that wearing a retainer is out of the question though. Tate can’t even hold it in his mouth without choking and gagging. We hope to go back in the future for more work on straightening everything up further. 

2010               and                2011

Tate had a cavity filled in the dental office without anesthesia a couple of years after that first cavity was filled. He did quite well and I thought we would be fine from there on out. However, we tried to get a cavity filled in the Spring of this year and the drilling was just too much for him. Tate tried so hard to cooperate but he could not. He kept closing his mouth and putting his tongue in the way. He asked for a drink over and over and gagged a lot. The dentist tried everything he could but it was not going to happen that day. So, we rescheduled and called in the good old anesthesiologist again. The experience was very similar to the first time except he only had to be under for about 20 minutes. This time, upon awakening he did not cry. He just said, “I love you, Mom” about fifty times which has become something he does when he is stressed lately. I don't hear it often enough and I do love hearing it but wish it was not usually under duress. 

The other day when we went for the cleaning? They suggested we begin using a Sonic toothbrush. I haven't worked up the nerve yet to suggest we push something noisy and wiggly in Tate's mouth. School starting back up was stress enough for one week. I guess I had better practice my ninja moves and my headlock holds and break out the electric toothbrush soon though.

I recently blogged about our last trip to see a medical doctor. You can read that here: Immunizations 

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It's Too Loud In Here!

Many people with autism like to be alone. They like quiet. They like calm. They might like some noise but only controlled noise. So, they don’t necessarily want silence and I’m not sure it is even about volume so much. They just don’t want unpredictable noise or chaos. For example, Tate loves music, television, and movies. He even likes surround sound but he NEEDS to be in control of the noise. He needs to be able to walk away if he is feeling overwhelmed. He wants to pick the movie and control the remote. He can feel at ease if he is controlling his environment and is able to predict what is going to happen. Touch, smell, taste, and sight are all a big deal to a kid with autism and I recently addressed some of Tate’s issues with touch. Noises (sound) are also an issue with many kids with autism.

Tonight we went to a restaurant. Ten feet from where Tate was sitting was a crying baby. Now, Tate doesn’t hate babies but Tate was miserable. He squirmed. He complained. He whispered things about babies who cry (whispering to himself is one of his stims). He stuck his fingers deep into his ears. He asked me if I had any headphones. (They use headphones at school to help with the noise level sometimes.) The screaming went on for about ten minutes while the mother ignored her baby. I love babies; but I honestly was beginning to squirm a little myself. Finally, the mother picked the baby up and gave him a bottle. The little guy went right to sleep and we were able to enjoy our meal. I have a friend who has a son with autism who probably couldn’t have lasted the ten minutes. They would have had to leave after just the first cries. Interestingly enough though, I have another friend who has a son with autism and when he goes to a restaurant he, himself, makes a lot of noise. He is non-verbal and one of his stims is to make loud noises. (Remember, autism is a spectrum and people are all over that spectrum.) The same young man who likes to make loud noises? When his baby brother cries he puts his hands over his ears! My theory on this is that he does not like his baby brother’s noises because they are totally out of his control and unpredictable. He needs to be in control of the noise to be able to tolerate it.

Just hangin' out, upside down.

Recently, Tate’s sister and I were in the living room watching a movie that Tate loves. I told him I wanted him to watch it with us. He watched it but he could not relax and really enjoy it. He sat in a hard backed chair behind the couch, instead of on the couch with us, and watched from the dinning room. He could not relax because he was not in control. He was not alone to enjoy the movie and he was not going to be able to pause it if he wanted to, or run it back and watch his favorite parts more than once, or fast forward through the song he did not like. He would have enjoyed the movie so much more if he’d been alone to watch it. When given the choice he will almost always choose to be alone.

Having seven children and belonging to a small, close-knit church family, we have always had a lot of “people traffic” coming through the house. It sometimes gets pretty loud in our home. When he was little, Tate did not hang out in the living area, showing off, and trying to get the attention of the adults as my older children had. He did not run off to play with the other children. He usually snuck off to my room, climbed into my bed to watch television, and wait for everyone to leave. I’d find him and invite him to be a part of our gathering, but know that he would not be coming out until the noise level was back down to his liking.

Tonight when the baby was crying, I was not only feeling a little stressed from hearing it myself, but I was watching Tate squirm and I was feeling stressed because he was stressed. I try hard to make his world “autism friendly” while at the same time challenging him to step out of his comfort zone and make his world a little bit bigger. It’s a fine line. I am usually guilty of staying far inside his boundaries to keep him happy but once in a while I drag him too far across the line and feel terrible about it. Sometimes it does pay off though. Sometimes, instead of a meltdown and huge amounts of anxiety, that lead to nothing but more anxiety, we get growth.

Going through a carwash was out of the question a few years ago. The noise terrified Tate. Now they are very doable. Tate still becomes a little nervous, probably because of the noise, but he loves watching the soapsuds cascade down the windshield. Smoke detectors at home and fire drills at school are no longer things that send him into a panic. Fireworks are another example of progress made. When Tate was young, a fireworks show would drive him over the edge. On the fourth of July, his siblings would have a great time with their dad out in the yard lighting fireworks. Tate would be inside in my bed hiding under blankets while I tried to soothe him. We did not stop celebrating the fourth or make our older kids go somewhere else to light their fireworks. Although we are very considerate of Tate’s disability and his sensory issues, it cannot ALWAYS be about Tate. We do have six other kids who need parents too. Surprise! Somewhere around age six or seven, Tate decided fireworks were pretty cool. Now he looks very forward each year to those loud pops and booms. He still watches and listens with his fingers in his ears but he enjoys the lights and noise quite a bit. He’s really livin’ on the edge now, huh?

Note: Most children with autism have Sensory Processing Disorder (SPD) and I will be writing more about Tate’s sensory issues in the near future. I recently wrote a blog post entitled “Don’t Touch My Skin” about his aversion to touch that you might find interesting.

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My 15 truths of parenting special kids

1. Parenting a special needs kid does not make you super hero. I seem to have given some of you the wrong impression. I am not supermom, not even close. I rarely cook anymore. Most of the time we all eat different foods at different times, especially in the summer months. I don’t spend enough one-on-one time with any of the kids. I lose my patience and raise my voice occasionally. I feel really successful on the days I keep the laundry done, the house fairly clean, and the kids happy.

2. Parents of special needs kids have a lot of insecurities. Sometimes I don’t know what to do. I’m winging it here. Oh, I’ve tried to read all the right books and surround myself with people who can advise me about my kids’ disabilities but I’m the one who makes the ultimate decisions and sometimes I do not know what the right decisions are. These disabilities are spectrum disorders. There is no one treatment or therapy that works best for all kids with special needs. What if I do the wrong things? What if I miss the things that would have helped them the most? What if I mess this up? Even though we have insecurities, I still believe #3 to be true.

They are so easy to love!

3. (In spite of #2), Parents of special needs kids are experts… on their own kids. I could never claim to be an expert on autism, Fetal Alcohol Syndrome, or ADHD, but I do know Tate and Sydney really well. When a teacher or doctor tries to tell me what is best for my kids instead of asking me to collaborate about what is best for them, we will not make any progress. Spending short amounts of time with a special needs kid cannot begin to compare with the investment the parents have made. Parents of special needs kids want to be asked, not told, how to best interact with their child because WE are the experts.

4. Parents of special needs kids like to talk about their kids… a lot. Something seems to happen to women when they give birth. The number one topic of conversation is no longer clothing, hair products, recipes, or movies. The conversation now revolves around their child. Parents of special needs kids are no different. However, we tend to flock together and talk about our kids' disabilities and therapies and their school situations. I tend to turn almost every conversation I have with anyone, anywhere, anytime, into a conversation about autism or ADHD. I cannot seem to help myself. I am sorry, friends.  

5. Parenting special needs kids is sometimes lonely. I am lucky in that I got to do this five times with typically developing children. But in some ways that may make it a bit harder because I know all the things my special kids and I are missing out on.

6. Parenting special needs kids can be exhausting. Yeah, I know; all parents are tired. Remember I did this with five typically developing kids. I know the difference between being tired and being exhausted. It’s not just the physical rest that we sometimes give up. There is so much stress. A disability often taxes a family emotionally. Typically developing kids grow up. They learn to do things for themselves. They eventually leave home. Think about it. Now, are you really THAT tired? I’m really THAT tired. Really.

7. Many parents of special needs kids hope for the best but prepare for the worst. We know where all the exits are, carry a bag of emergency supplies, and have a plan B in place at all times. There are these things called meltdowns. They may look like temper tantrums to you but they are not comparable at all. Meltdowns are not usually triggered by anger but are from anxiety or sensory issues. Meltdowns are not something a child can really control easily. Meltdowns can ruin a gathering. Hoping for the best and preparing for the worst also applies to the long-term as well. Parents of special needs kids have to have very flexible plans for their children’s future as adults. Many of these special kids will never “grow up.”  

8. Special needs children are expensive. They require therapies, doctors, medications, and schools that typically developing children do not. One of the things we hear a lot is, “You get help with all of that right?” I always want to laugh. Just who is supposed to be helping us? The federal government? The state? The insurance company? Who? We mortgage our homes. We take out loans. We work extra jobs. We do without things. We use our savings and our retirement accounts. Parents of special needs kids are often deep in debt.

9. Parents of special needs kids hurt when their kids hurt. Sometimes our kids have to do really hard things, academically, physically, or mentally. And we just have to watch, hands tied, while they struggle. Sometimes our kids’ pain, anxieties, and fears are incapacitating and there is nothing we can do to relieve them. Sometimes when I watch Tate pace, wringing his hands, or even breaking out in hives, because he is fearful of what lies ahead, I become physically ill myself. 

10. Parents of special needs kids need encouragement, not pity. We are proud of our kids. We celebrate smaller milestones than you will for your kids but they are just as precious to us. We love our special kids just as much as you love your kids. We do not often feel sorry for ourselves. We are not ashamed. An encouraging word means so much to us, probably more than you will ever know. 

11. (Similar to #10) Parents of special needs kids hear a lot of clichés. “Everything happens for a reason” and “God only gives special kids to special people” are two that I hear the most. Neither of these things is even true! Think about it. If everything happens for a reason then children are abused for reasons. Cancer has a purpose. The second cliché is no better. Lots of special needs kids are born into families that hurt them instead of help them. I hate clichés. I’d rather hear, “I prayed for you today” or “Your kids are sure making great progress.”

12. Sometimes, once in a while, there are a few of us, not many mind you, but a few of us parents, who feel guilty. What if I had not taken that cough syrup while I was pregnant? What if I had not used all those cleaning products while I was pregnant? What if we had started the early intervention sooner? What if we had tried harder and done more therapies? Sometimes we think about these kinds of things…. but mostly we don’t.

13. Sometimes parents with special needs kids are defensive. There are reasons for it. Some of us have had a few really bad past experiences with our kids’ peers, other parents, and teachers. We have learned from past incidents that not all children or adults are kind to us. We are hoping it won’t happen again but know we need to be prepared. Also, we know people are watching us, and our kids. We are different and we know it.

14. Despite #13, Parents of special needs kids are approachable. We WANT to spread awareness about our child’s disability. Ask us your questions. We will answer them. We would much rather explain the how and why than have you guessing and misunderstanding. Don’t stare but come over and ask us what you want to know. Remember #4, we love to talk about our kids just like you do and we don’t bite. Our kids don’t either (usually.)

Riding the train at the zoo

15. Parenting a special needs kid is rewarding, more so than anything I’ve ever done. The small things are often huge in our worlds. The things we learn from our kids and their struggles could never be taught using any other method. I had heard it before I had my own special kids: “He has taught me more than I could have possibly taught him.” I used to wonder what that could really mean, imagined that I might know; but I did not. I’m not sure anyone could understand without walking in the shoes we walk in. It’s life lessons we learn. It’s compassion, patience, joy, and empathy on a level that no one could have ever described to me before I became a parent to a special needs child. 

Note: This blog post has done so well I decided to try another similar to it. Click to read "An IEP Tutorial: 13 Tips." 

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"Don't Touch My Skin"

So many people with autism do not like to be touched. Before I really knew what autism was I had heard that people with autism feel things differently than the rest of us. I had heard that a gentle touch might hurt like a burn or a soft touch might feel very rough. This may be true for some but I am not sure that would be the right description for how Tate feels when he is touched. And, yes. He hates to be touched.

When Tate was very young he did not seem to have an aversion to being held, touched, or cuddled for the most part. He seemed to enjoy it like my other babies had. But he did not like to be caressed. He got upset and would stiffen and fuss if I ever tried to rub his back or his neck. I thought that was odd because my other children loved to have their backs rubbed and always had. So, as hard as it was I tried to remember. He often let me know when I forgot.

Now that Tate is older and can talk, he can sometimes put his discomfort into words that I can understand. He has a lot of trouble with meaningful conversation so he does not go into long explanations but he can give me a little insight on occasion. I think Tate was about eight or nine, when he began to say, “Don’t touch my skin” as he pulled away from my hugs. It seems to be the skin-to-skin contact that bothers him. If there is fabric between us he is more tolerant of touching. But even then he seems a little nervous, like he is afraid our skin might touch if he is not careful. He still says, “Don’t touch my skin” fairly often when I touch him. He doesn’t melt down or run away screaming; And I don’t think he is actually in pain but I do think it is uncomfortable for him. I can only imagine because I do not have all the sensory issues he deals with, but I think I can liken it to being “creeped out” by something that we might think is gross. He has an aversion to being touched by another person’s skin like one of us might have to touching a slimey slug or something really unappealing. I don’t know why, but it is what it is. I, myself, have always had an aversion to touching crushed velvet or velour. If I had to sleep under a blanket of either of those fabrics I would be pretty miserable. If I had to wear clothing made of either of those fabrics I would probably not get anything done all day while I sat and tried not to move. Ha. So, maybe I DO have an idea of what Tate is dealing with! I know a girl who hates to touch raw meat. It is really hard for her to cook sometimes for this reason. I have no aversion to touching raw meat but I sort of “get” what she means when she talks about how creepy it is for her.

Tate does not like to touch animals either. I am no expert on sensory issues, and I could be very wrong about this, but I don’t think that Tate’s issues with skin-to-skin contact are exactly the same as his issues with touching animals. I can almost see a shudder if I rub Tate’s back or touch his neck. I do not see the same shudder when an animal touches him. Oh, he hates it. He hates it a lot if a cat rubs up against him or if we ask him to touch a dog. He reaches out two fingers and barely touches the animal, ready to jerk his hand back quickly. I believe the issue Tate has with animals is more from the unpredictability of the animal. He cannot guess what the animal is going to do and surprises are frightening to a person with autism. As fate would have it, our animals are very attracted to Tate. Poor guy! Ha.

I asked Tate this evening if he wanted to hold our new puppy, fully knowing the answer I would get. Then I asked him why he did not like to touch animals, trying to gain some more insight. He said, “You know, animals can attack you.” I laughed and told him that the puppy was just a baby and wouldn’t attack anyone. He smiled and said, “I just don’t want him to bother me.” He has shown a little bit of interest in the puppy from afar and I’ve been pretty excited about that baby step.

So. Do I live my life carefully trying to avoid touching Tate? NO WAY! I am sympathetic and always watchful that we do not push him harder than he can stand, but affection is very important and he has to suffer through lots of hugs.

Tate, age 12

There is a four-year-old boy at the congregation where we worship. He (like our cats and dog… Haha) is drawn to Tate. The little guy wraps himself around Tate’s legs and hugs him at almost every church service. It is the cutest thing. His family has asked me repeatedly if they should try to stop him. My answer is always the same, “No! It is great therapy!” Lately, Tate gets out of the van to enter the church building saying, “That kid will NOT hug me this time!” The cool thing is: he has a smile on his face when he says it! See? The free therapy is paying off! Bring on the hugs.

Here is another post about the way Tate feels things: Does it hurt?

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