Shall we talk about sensory stuff?
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OK, I think it's time I jumped back on board for a little while. This time I want to talk about sensory issues. "Can I explain them?" you ask... well, not exactly. But I will do my best to tell you how I have learned to get around them. I do my best to prepare for sensory input. After 28 years I have a good deal of experience knowing what to expect, when to expect it, and how to deal with it when it happens. However, there are those sensory things that I just can't get over in a milion years. Certain sound frequencies, textures, smells, and appearances seem to cause massive sensory overloads that I simply cannot prepare myself for. For example, I cannot stand food that is soggy or gooey. If I use sauces such as mustard, ketchup, cheese dip, etc., I only use small amounts, and there has to be something firm or crunchy that can stabilize the softness. I don't do well with sliced bread, but tend to either use buns or seek out the "heel" pieces on the ends of the loaf for sandwiches, because the sliced bread packs down and gets soggy whereas the buns and end slices have crust all the way around and thus hold the firm texture better. Soggy textures will usually make me gag no matter how good the food is. Smells are a big one too. For example, I can't deal with any food that has any kind of pepper in it, because the smell of peppers actually hurts my head. It just bombards my senses and causes me to not be able to concentrate on anything else. This is also true of onions, celery, potpourri, cologne/perfume, cigarette smoke, and most household cleaners. There are a few particular sounds, lights, and physical appearances that cause this overload as well, and I have gradually learned how to better cope with many of them provided I am warned in advance that an encounter with one of them is imminent. If I know I can't cope, I know to just avoid the situation entirely, just like I would avoid a person who consistently reads me incorrectly. Sometimes a stimulus that regularly causes a massive sensory overload can become a source of fear, or even a full-scale phobia, because the sudden bombardment quickly brings the person to the brink of meltdown, and meltdowns are no fun. Here's another story from my elementary school days. I had a phobia of the school bell that lasted the entire time I attended public elementary school, which was from 3rd grade to 6th grade. The reason? The school bells were located in the hallways, and they were extremely (should I say excessively?) loud and shrill. If I was in the hall when the bell rang, the sound would not only startle me, but it would hurt my ears and my head for the entire 5 seconds that it sounded. Five seconds of that was often enough to send me into meltdown, so I became terrified to walk the hallways of that building. I soon learned that the bell was on a timer, so I set the seconds on my digital watch to where the bell would ring exactly when the seconds rolled over to "00" for the designated minutes that the bell was scheduled to go off. This helped as long as I had my watch, but it did not keep me from clamming up if I happened to be in the hall when the bell was scheduled to ring (as was sometimes the case). I would often hold my ears tightly the entire time I was in the hallway, and no one would be able to communicate with me. The bell was especially loud in the library, so I had major problems there on the days where our library time bumped up against recess time. We were supposed to go back to class at 1:55 on those days, which was 5 minutes before the recess bell, but that didn't always happen. And when it didn't, I would grow more upset by the minute. If we were still in the library at 1:59, I would be frozen to one of the tables clutching my ears for dear life. Unfortunately, our great and loving (ahem... jackass... cough) librarian decided that in order to leave every student had to be sitting up straight with their hands in their laps. Well, if it was a minute or less until the bell, I would be unreachable, and she would spend the entire minute drawing attention to me because I could not sit up and put my hands in my lap. Holding my ears and/or looking at my watch was apparently not acceptable, so she would often wait me out until the bell rang. A couple of times I managed to comply, and sit as she asked, but I could only last a few seconds. When she did not immediately dismiss the class, I lost trust in her words and simply resigned to hiding my ears for the final 30 seconds or so on the days when we stayed late. I never really conquered that fear, because while I easily learned how to predict the bell, I could not prevent the sensory overload that the bell created. Thus, all the predictability did was narrow my time of shutdown into 30-60 second intervals, rather than the entire time I was at school. So can you, being the loving and concerned caregiver that I'm sure you are, do anything to make things any easier? Well the first thing I'd say is know your child. It sounds simple, but a person who has sensory issues can not control them. He can't make a particular thing not bother him. He can, however, learn to manage his environment in a way that minimizes his contact with these stressors. You can help by not being offended when he doesn't want pepper or cinnamon in his food, or can't stand your air freshener, perfume, or cigarette smoke. Don't yell at him if it frightens him. Roll the windows up if there's a train coming. Minimize the things that can be minimized, that way the child only has to deal with the things that are inevitable. The more time he has at peace, away from overload, the more of a buffer he will have when stressful stimuli do come along. You will have more time to alleviate a problem before he breaks into meltdown if this latest problem is not the figurative "final straw" in a series that, maybe unbeknownst to you, has lasted all day. Just remember only to compensate for things that clearly need to be compensated for. If you get over-protective, you'll just insult his intelligence. The more you know his quirks, the better you will get at maintaining this balance. The more you become familiar with an individual with sensory issues, and the more you understand what sensory overload does to him, the easier it will be for you to prevent meltdowns and unresponsiveness. Again, if you can eliminate problems that you know about and can control, it will leave you and your loved one a lot more room to learn how to deal with the problems that can't be controlled. All right that's all I've got for now. Later all. Thanks for posting about this Stickboy. Sensory issues are a biggie with my youngest. Luckily, his school is aware that children can have sensory issues and they do try to accomodate his needs. He has headphones if he needs them. He has a weighted lap pad. We are also looking into getting Cozy Shades for the flourescent lights because they bother him. ETA - Your story about the fire bell reminded me of something. My son's class is aware he has autism and sensory issues. My son happened to be out of the room when the teacher was explaining that there was going to be a fire drill coming up. One little boy raised his hand and asked what they could do to help my son because he doesn't like really loud noises. I just thought that was so sweet and considerate. True, just remember that it's only necessary to use the parts of the diet that actually apply to your child's sensory needs. Too much special treatment now will prove to be problematic in the future (i.e. when he's 9 and wonders why he doesn't get to approach lunch or recess the same way all of the other kids, or worse, when other kids notice it and begin asking him personal questions). Stickboy thank you for all of your very good insights. I truely appriciate them. Its interesting, my kids have big sensory issues, and are very hyper. I also have sensory overload issues, and when they are constantly "up" I am just so over whelmed. I shut down, and if I can't shut it off I get very irritable if not left alone. Speaking of food. I've never though of dd rigid food issues as being sensory. I really should be considering that. She doesn't like the sauces,but loves jello? Could her resistance to eating a simple meal be sensory? She will eat crunchy and sweet all day (cheetos and chocolate) but is very picky with any other food. [quote]Speaking of food. I've never though of dd rigid food issues as being sensory. I really should be considering that. She doesn't like the sauces,but loves jello? Could her resistance to eating a simple meal be sensory? She will eat crunchy and sweet all day (cheetos and chocolate) but is very picky with any other food.[/quote] That's a really good question. So hard to tell. I would say sensory is a good possibility, but beyond that it's anyone's guess. I used to be very selective with foods (chicken nuggets, mac&cheese, tater tots, hamburgers, snack cakes, and chips were about it). I just didn't see any need to eat some of the more complex dishes that would sometimes be served for dinner (still don't in some cases). The simpler, the better because that basically allowed me to see everything that I was putting in my mouth and I wouldn't have any taste surprises. One by one, though, I gradually would get up the guts to try something new. If I liked it, I would add it to my list, and if not, I knew better than to ever touch it again. But just because that's how I was doesn't mean that it applies to everyone. It could be something along that line though.Stickboy, I love you  . I also love your new do, very cute.
[QUOTE=MamaKat] Stickboy, I love you . I also love your new do, very cute.
[/QUOTE] Thanks. You give that happy, hilarious 4.5 year old boy of yours a hug for me, OK?  Im 25 and for quite a ways back I have been pretty good with that issue, much better then when I was little, because having a stable environment where things are predictable was very helpful. At home especally so since me and my father are so much alike when it comes to our daily rituals. Since for most of my life, even school most of the time was very routine I have adjusted, since being little to knowing what could occure and being always prepaired (even without thinking) I knew what to expect and so was never startled or could not deal with it.
The one occasion recently which was quite problematic was for my very first time I drove into the city center of Philladelphia. Never have I felt so overwelmed, it was rough cause I never drove with such maddness, absolute chaos, Never in my driving time have I ever had such a hard time, not only dealing with the maddness of the city and everything in constant motion, always changing. Anyways... Not only did I fail to follow the directions on how to navigate and so I found myself on top of all that lost for almost an hr, but had to focus to not cause a catastrophy since driving was crazy. I never want to do that again, I was not prepaired, and dont know what I was thinking when I obtained the map, feeling it would be an easy drive. After my trip was over a few days later I headed home, this time I was prepaired to enter the center of the city, i knew what to expect, and navigated with success making my travel time home almost an hr shorter then the first time but did not panic as much when I hit those insane roads. I thanked God I made it out alive, with my car intact. Their were a few instances while lost that I pulled over for a few minutes anywhere I could find to chill out the first time, the second time thru i navigated without stopping, saving more time.  acts very agitated. I have always felt like it must be the over powering smell of the coffee. Sounds like what you are saying about pepper, do you think?It's possible, although I like the smell of coffee. 
Then again, some people like the smell of pepper (ouch... hurts just to think about  )Hmmm, no food surprises. I like that. She really does only go for the simply prepared foods. Thanks!!!! I've noticed my son only likes crunchy. I've started to try to hide things he doesn't care for in foods he likes. For example he won't eat eggs, chicken, most proteins. I think its the texture. So I made fries tonight for him, he loves them I got a recipe to take egg whites and beat them until frothy, then dip the fries in it, put pam spray on a foil lined pan, and bake at 350 for 30 min. I also dipped chicken in it. THis gave him the crunchy he like and I got protein in him! he can't stand yelling, melts down. I have a 14yr old who forgot how to speak in a normal tone about a year ago. All she does is yell and everyone. I told her we won't speak to her anymore when she yells. Anyway, thanks for pointing those things out! It helps alot! I just want to tell you guys thanks for all of your insight - Payne can't tell me in so many words...so it's nice to have someone be able to give me the gist of it...you know?I love your insights! Nicky doesn't like the sound of running bath water. Also, he does not like his head to be touched, haircuts are a nightmare even though he has had them since 19 months, it never gets easier. Tags in his shirt don't just annoy him, the REALLY annoy him - also demin. He doesn't like jeans. Just cotton sweatpants. He hates to sit on the potty - will not even try. He won't pee in the potty if one of my other sons left a "mess" in there. Any insights to help me? Some loud sounds does not bother my son and some low hums bother him alot. I never understood that. He has to pass a water fountain on his way to lunch at school and it has a low hum that I never notice. His therapist says it's ok because he is in control of it because sometimes he covers both ears sometimes he will only stick his finger in one ear. But he gets a panicky look on his face and hurries past it. Thanks for you thoughts, Nick. Very helpful. My son has a lot of sensory issues that we are working with. Oh, I have some sensory issues with smell. But, I love the smell of pepper. Very well said Nick. White beans are my pepper lol. I can't stand to see them cooking. I hate the smell. I feel pain when I see someone else eating them...I never really thought about that part before reading your post. I just avoid them altogether. Now it's only beans, but it used to transfer over to any food that was white. I've been able to add mashed potatoes back into my diet as long as I don't have to look directly at them when they are heading towards my mouth. If I look, I can't eat them. What about toe walking? Any take on that? ETA: Love the new look...just noticed the new avitar pic. [/QUOTE] Working on that... Writing is no big thing; publishing however, now that's going to be quite the hurdle it seems. As for the new "do," I've actually gone back to normal. The long shaggy look really only lasted about 6 months or so -- it's just that you guys have only known me for that long. Thanks all for the kind words. Again I am happy to see that I am helping to unveil this mystery. That's been my mission since I was forced to leave my job with special needs preschoolers due to mere lack of understanding and proper communication. I plan on unmasking everything before I am finished. I just hope that's not too tall an aspiration. It's interesting... you hear about autistic people having obsessions. But how often does an autistic person's obsession wind up being autism itself? With sensory issues is it common for someone to be over and undersensitive at the same time? Mason is so sensitive to touch. Tags on his clothes, the way his socks and shoes feel...if he gets anything sticky on his hands it is an immediate meltdown...but at the same time he can touch the hot stove and not even flinch, and it constantly reaching for it. Are these both sensory related things? I just don't get it! That's going into the phobia/odd fear territory. I did a thread on that a few months back. If I can find it I'll bump it back up here for you.Nick, I just want to say that your obsession with autism is fantastic, healthy, and enlightening to those around you. Thank you for your articulate and clear descriptions of your experiences. They have helped me and others enormously. Your book will have no trouble being published. I assure you. Thanks Nick! Been wondering how that book of your is coming along...... [QUOTE] That's been my mission since I was forced to leave my job with special needs preschoolers due to mere lack of understanding and proper communication. I plan on unmasking everything before I am finished. I just hope that's not too tall an aspiration. [/QUOTE] Have you found something else yet?? You should REALLY be working with these kids - you have insights into why they do things the way they do...it makes sense to me...why did your former employer not see that?!?! ERR! [/quote] I've had jobs since then, but I've been afraid to go back to that capacity. Mostly because I can't really pinpoint what the problem was, so I don't really know what to focus on in trying to do better next time. Also I've come into a much greater understanding of these things just in the past 2 years or so, a period which had only begun as my job there was growing rough. I think part of the problem (and these are just guesses) may be that employers expect you to take verbal instruction and run with it. Also they expect you to just "know" what to do without being told sometimes. They often did not follow a fixed schedule and were constantly compensating for not having enough teachers show up to cover the student/faculty requirements. When I would get to school and something like that had come up, I had a tendency to want to follow the lead of the other teachers since I wouldn't have time to process a new schedule of events for the day. I think the other teachers resented that and complained that they had to do most of the work when they were with me. Another thing could be that I often fail to look professional. Even though I understand the kids and guide them, I can sometimes look childlike myself because I still, to a degree, see the world as they do. Also I can randomly zone out or become overly focused on a single kid or group of kids and miss other things going on in the room that, apparently, I am responsible for stopping (I thought that's why there are three teachers to a room -- these kids do need one-on-one attention after all -- but I guess I was wrong there). And that does not make sense to most adults. I believe that it creeps them out and makes them doubt my safety. Also, and actually I hesitate to bring this up because it's not "politically correct," but child care in general is a women-dominated field. And it has appeared to me as though there is a double standard as to what women can do/say with the kids as opposed to what the (very few) men could do/say. E.G. I was only allowed to change boy diapers; women could do either one, which really screwed up the classroom teaching assignments when there were only two teachers present, as one person was usually designated "bathrom duty" for the day. I also found it personally insulting given the principle of the thing. Also I noticed that the other teachers often would pick up the kids and carry them, something which I often got raised eyebrows over. There were a few other subtle things that I felt put me at a disadvantage here, and you can say I was imagining things if you want to, but I definitely feel like I was viewed differently as a male childcare worker. Lastly I feel like the "autism" label, for those who knew, caused my bosses to assume that there were things I couldn't cope with when that just wasn't necessarily the case. They did not make a very good effort to try to figure out what I needed from them. Rather, they would just observe me, listen to what my coworkers had to say about me, and suddenly reassign my duties based on what they observed. I never really had a chance to understand what it was they were concerned over, so I was left only to guess as I am doing now. All of these things are only guesses, not necessarily truths. And because I can't nail down what is truth and what is misperception, I am afraid I will run into the same problems again if I go back into that field. Yes I am ranting -- sorry. I don't do it often, but that's just kind of how I feel about how things went. And with a job reference like that, who would hire a 28-year-old, single male for a position at their preschool? I just don't have much faith that there's an employer out there who would be able to see the right way to utilize me. Wow Nick...that had to have been very rough. I kinda felt the same way back when I tried my hand at teaching 4th grade. B was diagnosed halfway through the school year, and I quit to help my son. Teaching was definitely not my cup of tea. I didn't know what I was doing wrong. The feedback I got made no sense to me at all. I was riding the coat tails of the other 4th grade teachers, as were we all. One teacher in the department made the lesson plans for us all...and we followed them. I got singled out for it...why? They were all doing it. I left that job and haven't looked back. I wish I was exorbiently (sp?) rich and could hire you to be my boys' nanny. I'd love to have you work with my kids. Nick -- GREAT post! I esps. liked the insight about not adjsuting/adapting EVERYTHING -- I am leery of raising a "hothouse" child, even though her SID is relativley mild. It is a fine line to decide, sometimes! As far as work -- please keep looking, and keep on keeping on -- I agree it IS a women's world, to some extent male workers are always outsiders, but I LOVE having guys work with my kids. I like the guys who are part-timers (only, I have noticed) at our daycare -- they are invariably highly creative and bring a different perspective to the kids, than the women do. [quote="foxl"]As far as work -- please keep looking, and keep on keeping on -- I agree it IS a women's world, to some extent male workers are always outsiders, but I LOVE having guys work with my kids. I like the guys who are part-timers (only, I have noticed) at our daycare -- they are invariably highly creative and bring a different perspective to the kids, than the women do.[/quote]I am trying to get involved in the Arkansas Autism Society right now. If I can meet some people on a local level, maybe it'll help me to become active again as far as interacting with others who have experience with the condition. Nick, you just so rock! I copied your note and put it into an email to four of my friends with kids on the spectrum, as well as Cole's special ed teacher. Let me ask you a question about warding off a sensory meltdow. A couple moms and I have designed a "sensory yard" to be built immediately outside the side doors of the school. It is for large scale, gross motor work & our goal is to have the students use it to get themselves into self-regulation & to heighten focus...then go back inside & be better able to pay attention/learn. All the latest writings on sensory integration & attention issues say this is a good thing. There are sensory activities inside the classroom and also a new "sensory room" with a padded barrel to get inside & roll, tactile stuff, a hammock swing, etc. They'd go out to use the big rock climber & the roller slide, etc as needed. In all honesty, did you see this sort of sensory activity helping you at all, particularly in elementary school? Or did you guys do this kind of thing? We are setting up a master schedule that will have set times for kids to go out there - and will include reverse inclusion, but some kids that "lose it" during the day can actually be seen as starting to fall to pieces. You talked about that a couple months ago...that the tantrum, or whatever, can be "seen" coming on. The goal would be to notice that it was building, and for the teacher to say "Bobby, you seem to be losing focus here. Let's concentrate really hard on 3 more questions/words/etc, and if you can do those 3 well, we'll take a break." Then, he or she takes the kid outdoors & has them rock on the spring rider, or walk the curved balance beam, crawl through the tunnel, etc. Can this "preventative measure" work for a sensory meltdown? The only thing that annoys me is sound, so this is just hard for me to wrap my head around. Sorry to hijack! But if ya'll's kids do have these issues, wouldn't it be interesting to know that if the offending stimulus CANNOT be avoided, we teach our kids to recognize it, use a squeezy ball or somehting for 5 minutes, and boom...its over. Like fearing, but still getting the flu shot..you know? Thanks for your patience!! LeAnne My son is strictly a sensory -seeker, I haven't found anything thing that bothers him much ( other than typical stuff) I assume this is why he does not tantrum or meltdown, he doesn't get overwhelmed by sensory stuff, he is just always seeking it instead, the more the better for him. In a way I am thankful because we do not have behavioral issues with him or problems at the store, out to eat etc. but I wonder if he will ever be able to sit in a classroom, or workplace later on etc. . I have been told that I should try and give him as much sensory input as possible, then others tell me I should redirect him as much as possible ( try and supress it) . Not sure how this will help him in the long run. Any suggestions? Nick, when I get rich and certified in special ed and open my school for kids with autism you'll be the first person I hire! I'll even let you change diapers  .. ps feel free to rant away, I know I've had the male teacher problem discussion with my male teacher friends multiple times... it's frustrating that a few bad intentioned people can ruin it for so many
thank you for that. so many people dont understand the sensory overload or are as in touch with their child as may be needed to help them figure it out. but i agree with not making things obvious and embarrassing or making them feel different over it. the sensory part is bad enough! i grew up in a different place and time over 30 years ago. when i had my sensory issues (some still exist) i never got anything but its all in your head and deal with it. um, that didn't work! ever!!! but it wasnt my families fault, they didnt know and the doctors told them the same, its all in my head. now i know why i had the sensory issues, so i could better understand my sons' who is very sensory impaired, and help him overcome what he can. thanks so much for that post and being open and informative about something that alot of people who haven't experienced may not be able to fully understand. and dont give up on work. you can touch so many lives. my sons' greatest asset the last year is his occupational therapist who does sensory integration. do you know why? its because she has a zillion sensory impairments herself. she understands what can be overcome and how, and understands that somethings will always be there. [/QUOTE] No, I'll tell you what's frustrating, and that's that people are so judgmental that they assume you have bad intentions just because you act strangely or differently. I guess because I look "normal" at a glance, and talk fairly intelligently, people just assume that I know the ropes and how to automatically conform to them. As for trying again, let me ask you ladies one thing (not to single you out as a gender, but I'm sure most of you know what I'm talking about), and I sincerely hope there's a solution: how does a person have any confidence whatsoever when he is constantly afraid other people are making character-threatening assumptions about him? Every time someone does that to me, it gets just a little harder to tell myself that I'm just being paranoid. Don't get me wrong, I'd love to try again -- I feel like that is where I belong, at least to a degree -- but I can only take so much from people, and I'm near my limit right now. I'd need a ton of encouragement to ward off the paranoia right now. 
I have to keep my spirits up... Nick -- It sounds like a small daycare or therapy center with only a few employees would work out better, so you wouldn't have to deal with those personnel dynamics so much. You wrote quite a bit about sensory-avoidance -- do you also have some sensory-seeking tendencies? I'm especially wondering about night-time. I believe my son sleeps poorly because he's tactile/proprioceptive seeking at night, but I haven't been able to find anything written about this. Do you have any issues with internal regulation? For example, My youngest son never seems to spontaneously recognize feelings of hunger, and my oldest son takes off his shirt when he's cold, because he thinks he's hot. Have you ever tried the sensory-processing disorder symptom checklists? What do you think of them? http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html - divided into sections for the various senses, appropriate for all ages except infants/toddlers. http://www.sensory-processing-disorder.com/adult-SPD-checkli st.html - teen/adult checklist, divided into section for sensory modulation, sensory discrimination, internal regulation, etc. Thanks so much for your insight. My son has sensory issues. He HATES loud and unpredictable sounds as well. Unfortunately my husband only gets irritated that hes isnt acting 'normal' Altho my hubbys been alittle more understanding and has been surprising me lately and being alittle understanding but still has a LONG way to go! Thanks for sharing, Nick. I always look forward to reading you posts, theyr so interesting and i love getting a first hand account of what my son may be going thru. Nick,
Your posts are so insightful. I love reading them and having a window into my son's mind. He has a lot of sensory issues. He was not diagnosed until he was 9 so we really had some struggles before I understood what was going on with him. I have a question you may be able to answer. One way that we dealt with his sensory issues at dinner time was to have alternatives that were his comfort foods (i.e. peanut butter and bread), however out of nowhere his comfort foods are no longer comforting and he avoids them. He now refuses to eat peanut butter! Any ideas why? [QUOTE=Shawnsmom]Nick,
Your posts are so insightful. I love reading them and having a window into my son's mind. He has a lot of sensory issues. He was not diagnosed until he was 9 so we really had some struggles before I understood what was going on with him. I have a question you may be able to answer. One way that we dealt with his sensory issues at dinner time was to have alternatives that were his comfort foods (i.e. peanut butter and bread), however out of nowhere his comfort foods are no longer comforting and he avoids them. He now refuses to eat peanut butter! Any ideas why? [/QUOTE]It may be that he simply "burned out" on it. A lot of times I will have those "comfort foods" that you speak of, but after a while I will sort of get tired of it and it won't do anything for me anymore. When that happens I will usually develop a new "comfort food." I almost always have more than one (usually four or five) at any given time, but sometimes I still have phases where nothing does anything for me at all. My advice for now would be to be patient and see if he develops a new favorite food. I always did within a few days. In the meantime I would sort of nibble at meal times -- just enough so I wouldn't be starving. For now, I'd say just keep an open mind and see what happens in the next few days. Best of luck. |
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, and lots of times has the 'well he has to get used to it' attitude and isnt very accomadating at all! Its makes me upset and results in a fight and hayden screaming and crying (hes sensitive to arguments and dosnt even like when you talk in a serious tone).