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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Sydney: From the Back Seat of the Van

A while back we took a trip with the kids. Seat belted in the van. For hours. And hours. And hours. For some families, for some kids, this might not have been a big deal. For us, it was. We were traveling with a lot of capital letters. The letters FAS were in attendance. Those stand for Fetal Alcohol Syndrome. Then there was ADHD. Those stand for Attention Deficit/Hyperactivity Disorder.  And those are just the letters that our precious little Sydney brings with her. Our son Tate brought ASD. Those letters stand for Autism Spectrum Disorder. Tate is the youngest of our biological children but Sydney is our youngest child.

Sydney is adopted. We found her in an orphanage in Russia when she was six months old. We met her when she was almost nine months old and we got to bring her home when she was ten and a half months old. We were well aware of the fact that she could have special needs. We were of the opinion since meeting her that first time that she does have special needs. We got her diagnosis when she was two years old. She’s now ten. This story is from my archives and took place when she was eight.

Trying on hats

Sydney had been a real trooper for days as we confined her for long periods in her car seat and dragged her from one place to another where she was told to stay quiet and sit still. As her parents, who know her so well, we know just what she is and is not capable of and we try not to ask more of her than we know she is able to handle. Others, who do not know her background or know about her disability, probably often wonder why we allow some of the things we do. I used to think ADHD was basically code for “child without any discipline at home.” I now understand and am so glad I have been humbled in this way. The judgmental and uncompassionate person that I was, needed to be humbled. God always gives me what I need.

We had been in our hotel room on night one of our trip for a very short time when we got a call from the desk saying they had received a complaint about noise coming from room 309.  That was us.  It was true we were probably a little too loud considering our very late arrival time. I had been trying to quiet the kids down and had been fairly proud of Sydney for her behavior, considering the medication she takes for hyperactivity had worn off hours before.  I got her into bed quickly. She did not really get to stretch her legs and move around much after being confined to the car for hours. I hoped she would sleep-in but knew she probably would not. She woke early but I was able to convince her it was still not REALLY morning, thanks to the room-darkening drapes hotels have. We slept until around 8:30 and that is almost unheard of for Sydney. Within minutes of her getting up, we got another call from the front desk. The noise coming from our room was mentioned again. In disbelief I exclaimed, “You’ve got to be kidding me! We’ve only been up for a few minutes and we are whispering.” The man said it was the people below us who were complaining. Were we stomping when we walked? Did we have children running back and forth? Of course! SYDNEY!  All forty-two pounds of her was making too much noise for the folks below us. This was a really nice motel. Surely the wall and floors are not that thin and delicate. I quickly gave Sydney her medication and put her in the shower to play for a while. She thinks the shower is as good as any water park. Once her meds had kicked in and she was out of the shower, we made sure she sat on the bed until we were packed and ready to go. Of course, I did not want to infringe on the rights of others, even if they were being a little ridiculous.  

I’ve always been of the opinion that my special needs kids’ rights end where others’ rights begin. In other words, I believe that my kids should have a right to an appropriate education and many other things, as long as it is not interfering with the ability of the other children to learn or participate in the activity. I said that to say this:  I am not unreasonable. I am not demanding the world bow down to my kids because they have handicaps. They are not a burden to me but I actually am very aware of the “burden” they may be to some people they may encounter. I try to be very proactive in preventing problems before they arise.

That night and that morning when I knew someone was complaining about my noisy little girl, I wanted to find the “victim” and explain. I wanted to tell them until they had walked a mile in my shoes, maybe they should just suffer through fifteen minutes of noise while I got my kids into bed. I wanted to ask them if they had ever known a child who had to take a medication just so she could calm herself enough in the morning to breath normally, have a rational thought, and walk instead of run where she wanted to go. Would it have done any good? Perhaps not. Perhaps that person is the person I was before I had these two kids and all these capital letters to raise. Perhaps that person needs to be humbled but it is not my place to humble them. These are the kinds of things I have learned since I became the parent of a child with special needs. My Sydney, running, walking, hollering, or whispering, is a joy to be around. People who complain about her noise? They are missing out. 

I couldn’t talk about our travels with Sydney without remembering some of the things we heard from the back seat. 

Sydney: "Dad, I have a riddle for you. We ran over a possum and his dad had to take him to the shop. How is this possible?"  One of our older daughters, Bailey, had told us some riddles the day before and she ended all of them with “How is this possible?” One of the answers to one of Bailey’s riddles was: “His mother was the surgeon” so when Sydney demanded we try to answer her riddle, her daddy said, “His mother was the surgeon.”  Sydney, not understanding any of the riddles from the day before, and having no idea how her own should be answered, said “OOOOOHHHHHH!” She sounded so relieved that someone knew the answer and she didn’t even question him about it.

A second attempt at a riddle: "We ran over a possum. His grandma took him to the gas station to get air in him. How is this possible?" Same answer.

Sydney: "I know how to say pizza in Spanish. Hildora." We humored her and one of her older brothers and I repeated, “hildora.” Sydney immediately responded, "You are saying it all wrong. It is caldooza." She loves to change the rules mid-game and she loves to correct people so she does this kind of thing often.

Sydney hollered, "Look at that! A giraffe!" I was already looking out and had just seen a display of Santa and his reindeer but I looked around for the giraffe. Then comes a giggle and "Made you look!"  Of course, once she got me, she tried to do it again for the next hour. She claimed to see chickens on the road and many other things that were not there.

The thing we heard the most was, "OH! Do you see those cows? Aren't they sooooo cute?" She noticed every cow between home and our destination in Tennessee and commented on every one of them. 

Also by this author: "15 Truths of Parenting Special Needs Kids."

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