Tag: autism sensory issues

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Why Understanding Sensory Needs is Important

Why Understanding Sensory Needs is Important

Now that we’ve covered all of the senses, I want to talk about why it is so important that you understand how these sensory needs truly affect a person with autism. Every day, our bodies (and brains!) are constantly dealing with noises, tastes, smells, etc. Some days, it’s exhausting – think how tired you might be after being in a noisy room for a long period of time.

Now imagine this. You are in a crowded room with several people wearing different lotions, perfumes or colognes. The lights are flickering (maybe only you notice this!) and your shirt is itchy. One of your socks is slightly twisted, so the seam is across your foot and it hurts. The noise of people who are constantly shifting in their seats or tapping their fingers or swinging their feet is enough to drive you crazy. Then, the fire alarm goes off and the pain from that sound is excruciating. To top it all off – you are hungry and you can’t tell anyone what you need.

How would you react? Would you be able to sit calmly and listen to the teacher read a story? Could you focus on a test where the letters seemed to be dancing on the page? Would you be able to color a picture when you aren’t sure how to hold the crayon because your fine motor skills are so affected by autism?

And this is just a very small thing that people with autism deal with every day. This, on top of the desperate need for routine – the need for things to be in the “right” place – the need for kind people to be around you.

No wonder so many people with autism have meltdowns. (Not tantrums – we’ll talk about the difference in meltdowns and tantrums another day) Their bodies are so overwhelmed by the sights, sounds and smells that are always bombarded them that it’s hard for them to stay calm. Imagine trying to sleep when all you can hear is a faucet dripping or the strong smell of fabric softener?

It took me a long time to truly understand Casey and Rob’s sensory needs. I finally happened to hear about sensory issues at a conference I attended and it was like a slap in the face to me. So many things started to click! How Casey was terrified to be in the bathtub when the water starting draining out. How Rob had to wear the same type of shirt (this was in elementary school – had to be a certain brand from Wal-mart). How he squeezed his jaw when he was getting overwhelmed. How neither could eat in certain restaurants (the noise of the HVAC).

Why stores were so hard for them. Why he refused to eat certain foods and why neither of them could sleep. Why he never noticed things that were hot and why she refused to go in the gym at school.

Once I knew why things were happening, it made a huge difference in our lives. It took a long time (and things change – we are constantly on alert for what may cause either of them pain or discomfort) to really understand that they weren’t just being little turkeys when they avoided something. They were truly in pain. Noises are still hard for both of them. Last night, we went to a parade my niece was in and Casey and Rob both got tense when they saw the fire truck coming. She put her fingers in her ears as soon as she saw it and he followed her lead. (My mom covered his ears for him, too – he loves the trucks, but their air horns are extremely painful to him.)

When you start noticing behaviors with your person with autism, think outside the box. Consider any new laundry soap or shampoo (for them and you!) – anything with a scent that they might find too strong. Think about the lighting in the room – is it flickering? Consider the temperature – you may be comfortable, but they might be too hot or too cold. Really notice the noise level – and remember that the noises may not be ones that you can hear clearly, but the person with autism can. They might be loud noises or very low, like HVAC systems.

The best way to discover what might be going on is to start a journal. When a behavior happens, note where/when/who was around. What clothes they were wearing. The activity they were doing. Do this for a few days and you may see a pattern. Maybe they are frustrated because they can’t hold their pencil. Maybe they are hungry. Maybe the person next to them smells funny (I don’t mean this to be mean – the person may use a different soap or maybe they smell like the French fries they had for lunch. Just because a scent doesn’t bother you, doesn’t mean it won’t bother your child!)

Many behaviors we see with autism could be sensory needs. A child who runs away. A child who won’t eat. A person who can’t sleep. A person who avoids a certain room. It takes a lot of work to discover the reasons behind behaviors if your child can’t tell you. Sometimes, they can – Casey and Rob couldn’t and still won’t. We have just learned what issues they have, avoid as many as possible and are ready to help when sensory needs pose problems.

Please – when your child starts a new behavior, consider sensory needs as a possible cause. Of course, sensory needs won’t always be the cause, but in a majority of cases, I bet they are at least a small part of the problem.

I also bet that you have some sensory needs yourself. I know there are certain materials I won’t wear and scents that make me gag. Think about it – I bet you have learned what bothers you and you just avoid it. But what if the adults around you make you do things or go places that are painful and you can’t tell anyone? It’s meltdown time!

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Autism and the Sense of Smell

Autism and the Sense of Smell

I saved the sense of smell until last because it seems to be the sense that Casey and Rob have the least issue with. Maybe that’s because their sense is hypo-sensitive and they don’t know what they are missing. I have rarely seen Rob bending closer to something to smell it better, but Casey does. Rob is more concerned with how things look, feel and sound.

For a long time, Casey would smell her food before she would eat it, but I don’t see her doing that much anymore. She eats almost anything so maybe she really does have a hypo-sensitive sense of smell. Taste and smell go hand in hand when we eat and her ability to eat a wide variety of foods might be a sign that she doesn’t notice the smells of some foods.

Rob never smelled his food, but he also won’t smell a flower if I asked him to. He might bend down to it, but he won’t really smell it. It’s almost like he isn’t sure what is expected when I ask him to do it. Casey will smell shampoo, deodorants, toothpaste. He just uses what he is given.

She also used her sense of smell to get back at me for telling her something she didn’t want to hear. It drives me crazy when she leans into my hair and takes a deep breath to smell it. Unfortunately, I made the mistake of telling her not to do that and now, if I have made her mad, she will lean on me and smell my hair. (Yeah, I know having your hair sniffed isn’t that big of a deal, but it drives me nuts the way she does it! 🙂 ) More proof that people with autism do have a sense of humor – she will lean in for a sniff and just grin her ornery grin as she knows she has gotten my goat again.

Casey will tell me if something smells good or bad. Rob just looks at me like he has no idea why any smell would be good or bad. I know he can smell, to some degree, but he is definitely hypo-sensitive in that area. I think Casey is, too, as things that smell bad never get her attention. I’ve driven by skunks on the road and made comments about the terrible smell and they both look at me like they have no idea what I’m talking about. I’ve never seen either one of them wrinkle their nose at something that stinks. Nor do they seem to enjoy smelling flowers or fresh cookies.

For people with hyper-sensitive senses of smell, the world can be a rough place. Ladies with a lot of perfume on – fires burning – lit candles – even shampoo or soap can be extremely painful for them and can cause them to feel sick. Think about times you have smelled something and felt nauseous from it – imagine that 24 hours a day, 7 days a week. Is it any wonder that sensory issues can cause meltdowns? I’m not sure I would make it an entire day dealing with what Casey and Rob handle every day. They are stronger than me.

If you notice your child avoiding certain foods, people or places, think about what they may be smelling. Is there someone wearing heavy perfume? Does the food have a strong odor? Even bath time can be difficult if the scents of shampoo or soap you are using are too strong. Try unscented items for a while and see if that helps. (But remember – our kids have amazing memories and an inability to generalize, so it may take several tries before you have a calm bath time with new shampoo!)

You should be able to discover how your child’s sense of smell is affected fairly easily, if they are willing to try. Gather several items with different scents and see if your child is willing to sniff everything. If they avoid it all, I would guess they have a hyper-sensitive sense of smell and will avoid anyone or anything that has much of an odor. (remember – they can smell things we don’t – if they avoid it, they can smell it, even if you can’t!) If they will smell the items without much reaction, my guess is they have a hyposensitive sense of smell and aren’t able to notice the odors.

Keep in mind that, just like everyone else, their bodies change as they grow up and the way their senses are affected may change, too. Very few things in autism are permanent. 🙂

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Autism and the Sense of Touch

Autism and the Sense of Touch

Honestly, the sense of touch is messed up with both Casey and Rob. They are both a mixture of hyper-sensitive and hypo- sensitive when it comes to their skin.

Rob will dig at insect bites until they are bleeding because he doesn’t feel the pain. He doesn’t notice cuts or bruises. He had a broken collar bone and it took hours for him to slow down enough that I knew something was wrong.

I have to turn his shower water on because he won’t notice how hot it is and will get burned. He burned his finger badly as a teen because he laid his hand against a hot pan and didn’t notice. He doesn’t notice sun burn or the sting of a bee. (However, he has had bad reactions to insect stings and ended up in ER, so he is afraid of them.)

He needs the weight of many blankets to be able to sleep as he can’t feel the pressure of just one. He loves standing in pouring water for the deep pressure it provides.

But – his sense of touch is hyper in some areas, as certain food textures will make him gag. He can’t wear certain fabrics as he will break out in a rash. His body temp does not regulate well, as he can overheat but not feel cold.

He enjoys his skin being “brushed” (a light tickle that I never thought he would notice). He also likes being lightly tickled on his arms and back, but he also enjoys tight bear hugs. It’s always a question whether he needs more or less of something.

Casey gets hot and cold easily. She can adjust her bath water so it’s not too hot. She will jerk away from hot things and she’ll wear almost any fabric. Sunburn doesn’t bother her and she rarely picks at insect bites.

But – she doesn’t feel pain. She sliced her leg on a mattress spring (it was nearly new – I still don’t know how it happened!) and the only way I knew was she was in the bathroom forever and I went to check only to find her patiently putting bandaids on her leg. It took 16 staples to close the gash.

She is terrified of needles because they hurt, but can stub her toe and not notice. She doesn’t like water pouring on her and food textures are not a problem. She is afraid of bees, but I think it’s because Rob and Mandy don’t like them, so she just follows their lead. 😊

The sense of touch can affect your child in so many ways. Things you never thought of – the seam in their sock, the tags in their clothes, how hard their chair is, whether they can sleep at night or even whether they can concentrate in school. After all, imagine trying to concentrate when all you can focus on is how tight your shoe feels.

It can also be dangerous when a person has hypo-sensitive touch. Just like Rob’s collar bone and Casey’s cut leg – injuries can be severe and they won’t notice. And when an injury does occur, you have to be really vigilant about how it’s healing. They aren’t able to tell you if it starts hurting more or is getting infected. It’s another thing to consider if your child pulls away from you and doesn’t like hugs. It’s hard not to take that personally, but in reality, it’s probably their sense of touch.

If your child is having behaviors, definitely consider everything they wear – what they are sitting on – how they hold pencils. Their behaviors might be as simple as a tag in their shirt rubbing their neck. (Tagless clothes are amazing!) When you have a child like Casey or Rob, who are both hyper and hypo sensitive, it’s difficult to know what is causing the behavior. Like everything else with autism, it can be tricky to discover the root cause. The best way is to write down everything your child is wearing each day and watch for a pattern. It’s a pain to do, but if you can discover the issue, your child will be so much happier! (and so will you! 🙂 )

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Autism and the Proprioceptive and Vestibular Senses

Autism and the Proprioceptive and Vestibular Senses

I’m sure many of you wondered if I knew what I was talking about several weeks ago when I mentioned I would be talking about the six senses. Many people have never heard of the proprioceptive and vestibular senses and they are ones that can really affect people with autism. Rob and Casey both have issues with their proprioceptive/vestibular senses.

Basically, the proprioceptive sense tells your brain where your body is. Like – closing your eyes and being able to touch your nose with your finger. Rob can’t do it. Casey can, but she struggles with it. It also tells you whether your feet are on concrete or grass. Receptors for the proprioceptive sense are deep in joints and muscles. You need your proprioceptive sense for smooth body movements so it is vitally important for all motor skills.

Vestibular sense is more for balance and spatial orientation. It helps you balance on one foot. It’s how your body understand how you are moving – like what direction and how fast, even whether or not you are moving. So many people on the autism spectrum have problems with fine or gross motor skills and these two sense are the reasons why. Just like with the other five senses, a person can have a hyper or hypo sense of their body and how it’s moving.

Rob struggles more with proprioceptive issues that Casey does. He needs deep pressure to help his body know where it is and how it is moving. When he was younger, this was a much larger issue and he often had a weighted vest on or a weighted lap belt in school. I also used wrist weights with him (don’t buy the “sensory ones” – buy ones that people use to work out. The cost is about a tenth of the sensory ones!) when he was struggling to write. As odd as it sounds, his handwriting is beautiful – nearly perfect. His sense of order demanded perfect letters, even as his body couldn’t easily write them. This caused him to have a lot of anxiety and still does at times, but he has learned that he doesn’t have to be perfect. 🙂

Ankle weights (again, go to the sporting goods section!) are also wonderful tools to help someone with proprioceptive issues. Weighted blankets can help them regulate their body and sleep better. Casey loves lots of blankets piled on her, but she doesn’t need them like he does. As a child, her handwriting wasn’t good and it still isn’t. Now, it is more that she simply doesn’t like to write (though this could be a sensory issue) – she loves to color and draw, though. But – writing is a very precise activity where her art is more whatever she likes.

I’m sure Rob’s issues with his vestibular sense were the main cause of his many accidents as a child. He was clumsy and could trip over a piece of string. He fell into our concrete porch steps and needed stitches. He fell down the last few steps into our basement and earned a helicopter ride to a children’s hospital when he wouldn’t wake up the next morning. He jumped down a flight of stairs and broke his collar bone. And the list goes on…. His vestibular sense didn’t help him and he wasn’t afraid of anything. A really bad combination! (How he jumped off the roof of our house and never got hurt is beyond me!)

Rob also used a platform swing when he was in elementary school. It was right in the classroom and he could lay flat on it as he practiced saying his spelling words and math facts. We quickly discovered that what he learned as he was swinging stuck with him. He learned so much easier when he was swinging. The swing moved to the junior high with him, but he didn’t seem to need it as much. The swinging movement calmed his vestibular and proprioceptive senses enough that he was able to concentrate.

Equine therapy was also a huge blessing for both of them. While on the horse, they practiced many things. many of the games involved throwing bean bags at specific colors or shapes (they knew these, but having to throw the bean bag required their body to learn how to do what their mind wanted, if that makes sense – it could be a struggle, especially for Casey). They learned to shoot basketballs with both hands on either side of their horse. “Crossing mid-line” is a big issue. This means their right hand never goes to the left side of their body and vice versa.

A big indicator of a child with vestibular or proprioceptive issues might be when they are writing. If they switch hands when they get to the middle of the paper, you may want to keep an eye out for other signs. An occupational therapist can give you suggestions to help your child. Casey switched hands as a child, but she is definitely right handed now. Rob switched, too, and favors his right hand, but uses his left often.

Fine motor skills, such as cutting, writing, buttoning and tying shoes, can be a problem for children with hyper or hypo vestibular and proprioceptive senses. Casey seems to have worked through her struggles and while she does have problems once in a while, for the most part, she does everything she needs/wants to do. Rob still can’t tie his shoes. I’ll admit, we worked on it for years and years and then decided it wasn’t a battle worth fighting anymore. He might be able to do it, now, but he likes his slip on shoes and will ask for help if he needs, so it’s not likely a skill I will push him on. There are other things that are more important.

If you suspect your child might have vestibular issues, try spinning or jumping with them several times a day. A small trampoline works well or an exercise ball that they can sit on. (Rob sat on one at the desk in his room for several years.) There are also small seats that you can place on chairs that allow your child some movement while still sitting still. Swinging is another great option. Anything that will help your child learn to control the movements of their body (and have fun!) is great. I wouldn’t recommend riding a bike, though – at least not until they have a little more control. 🙂

For proprioceptive problems, try weighted items. Swinging may help with this, too. As with everything else, what works for one child may not work for another. Try something new and see how your child reacts. It is obvious fairly quickly what they like and what helps.

An occupational therapist should be able to give you more ideas on what may help your child. Don’t be afraid to ask – sensory issues are not always the first thing people think of and those issues are often the root of so many problems.

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Autism and the Sense of Sight

Autism and the Sense of Sight

First off, please remember that what I share on this blog is our life. I’m not a doctor or therapist or any other professional. I’m sharing ideas that might work for your child – but you need to decide what to try and what to ignore. As I’ve said before, what works for Casey may not work for Rob and vice versa.

On to their sense of sight…

Since they can’t tell me exactly what they see, I rely on what they draw to tell me how well they see. They both have hyper-sensitive sight, meaning they see much better and more details than most of us.

Casey can color and paint the smallest details on her projects – but only if she sees the need to do that. 🙂 Often, she is in such a hurry to move on to the next project or fun thing to do that she rushes through her art. I have only a few examples of the details she sees in things.

Rob, on the other hand, can use his iPad to draw amazing pictures with details in the cars and characters that I’ve never noticed. The little things that tend to blend into the bigger picture, he sees. He used to use the “paint” program on my old computer to draw characters from the Wizard of Oz – and every one would have little details. Dorothy’s shoes had sparkles, her basket had weave, her dress was perfectly spaced blue and white checks. The lion had a puff of long hair at the end of his tail and the scarecrow had hay sticking out in different places. I so wish more of those pictures had gotten saved and printed. But, when Rob is done with his drawing, he immediately erased it. I only have a few of them. 🙁

His drawings of trucks and cars include the smallest details of the hub caps of each car. He knows the license plate numbers of several vehicles. He can tell from several blocks away if a car coming towards us is someone we know. I’m lucky to notice as we pass!

When he uses sidewalk chalk, he draws each letter in calligraphy. He can write beautifully – again, when he wants to. Most of the time, he seems to think what I’d like him to do is pointless, so he is fast. But, when he writes thank you notes or signs cards, he carefully and perfectly signs his name. He can make elaborate creations with his Legos, but often sticks to his trees and power poles. (He still stares at power poles with a fascination I don’t understand. I’ve wondered if he hears a hum from them.) Wind turbines are especially fascinate him – he could watch for hours.

Rob loves running water – ocean waves, waterfalls, creeks. I know it is incredibly relaxing to him, but I’ve also discovered that he loves them because of the patterns he sees in each. He sees colors and designs where I see running water. I love waterfalls for the beauty I see, but he sees a much deeper beauty in each. No matter how small, he has to stop and stare at running water. A few summers ago, he actually went wading with us (it had been years since he did that!) and he just stood and stared at his feet.

When I got closer, I could hear him talking. He was naming all of the colors of small pebbles he saw by his feet. Again, I saw some colors, but to me, they were mostly brown or tan. Rob saw so many more colors than I did, until I finally slowed down and really looked. He will stare at a fire – flowers blowing – blades of grass. He is in his element in nature.

Something else I’ve learned. For Casey and Rob, looking into someone eyes is very distracting. They have both told me that eyes move. I couldn’t understand what they meant until I really studied how the eye works and understood that they were seeing the pupil constantly move. They also see the different colors in people’s eyes. You may think your eyes are blue or brown, but to Casey and Rob, there are lots of colors in them and those colors are distracting.

I’ve often heard people with autism say “I can listen to you or I can look you in the eye.” That is definitely Casey and Rob. That is one of the first things I try to explain to new people they meet – they are always listening, no matter what they are doing. Please be aware of this when you talk around your child. Even when they are completely occupied with something, they are listening!

One thing does surprise me with their eye sight. I know they are both very sensitive, but sunlight doesn’t bother either of them. They have sun glasses and might wear them, but they don’t insist on it. I would think that if they see so many details, that sunlight would be hard to handle, but they don’t seem to care.

I do know a few people with autism who choose to wear dark glasses as much as possible to try and block out some of the constant details that are always around them. Rob had a really hard time in stores as a little guy because he saw the lights constantly flickering. Casey would have meltdowns because the flickering lights were making her feel sick. If your child has a hard time in stores, try putting sunglasses on or letting them wear a hat they can pull low over their face. Movies theaters are also difficult because of the flashing lights in the dark room.

When your child has a meltdown, try to write down where you are, what is around you – you may discover their problem is too much visual stimulation and they can’t get away from it. This may also be the cause of your child wanting to walk with their eyes closed. Bumping into things is easier than dealing with the constant stimulation of colors and shapes around them.

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Autism and the Sense of Taste

Autism and the Sense of Taste

Ever since she was small, Casey has been able to eat weird combinations of foods.  One day when she was about 7, she ate almost half a pound of raw hamburger.  I was thawing it and she got a spoon and ate all she could.  I’ll be honest – I almost threw up when I found her. 

She would grab a spoon and a container of chip dip and eat it like pudding.  She ate anything and everything.  Now, I know that her sense of taste is definitely hypo-sensitive.  It’s only been in the last few years I have found a few things that she doesn’t like. She won’t eat pickles of any type.

She doesn’t care for sliced tomatoes but loves the cherry ones. She is not a fan of chocolate and will only eat a few types of chocolate candy. She doesn’t like chocolate ice cream, pudding or milkshakes.

Last year, she discovered salt and pepper. She had often put salt on a few things, but now… Now…. It’s a battle to control her salt usage. She covers food with pepper. I’ve even switched the salt and pepper shakers so very little salt comes out. This over-seasoning is more proof that her sense of taste is definitely hypo-sensitive.

Rob only puts salt on fries and chicken nuggets. He ate almost everything as a little guy. I think it was just before puberty that his sense of taste changed. He ate pizza, spaghetti, chili – and then he didn’t. It wasn’t a gradual process. He just stopped. I don’t know if his anxiety increased at puberty and caused more sensory issues or if the sensory issues caused his anxiety.

Either way, he became a picky eater. For years, he refused to try anything new and nothing gooey could be on his plate. Luckily, he ate most meats and always his fruits and veggies.

He is willing to try new foods now – even gooey ones. It doesn’t always go well as I’ve seen him gag on the tiniest bite, but he does try. I never force him to eat anything, though – that’s a recipe for disaster and I sincerely hope you never let anyone force your child to eat. Rob has had that happen to him. He remembers that.

Rob’s issues with foods aren’t necessarily caused by having a hyper-sensitive sense of taste. His are more likely the texture of the food and not the taste, or lack of it. He does tend to stick with foods that are more bland so there may be certain things that he tastes more strongly.

He tastes sour things more strongly than she does and absolutely cannot stand to taste anything bitter. Bitter doesn’t appear to bother her as she chews medicines with no issues. She loves sour foods – foods that you and I wouldn’t be able to eat, she has no reaction to.

If you want to discover how your child’s sense of taste is affected, start keeping a list of what he or she will eat – what foods they avoid – and if they like to add salt to everything. Once you start comparing the foods on your list, I’m sure you will find whether your child is hyper (too sensitive) or hypo (not sensitive enough) to each taste – salty, sweet, sour and bitter. This might give you an idea of what type of foods to offer your child and what to stay away from.

Honestly, it never occurred to me until recently how strongly Casey’s sense of taste is affected. As I wrote this, I kept thinking of other foods that prove just how little she tastes. She is a good eater (and tends to overeat, thanks to one of her meds) and I just never stopped to think about how she eats. I always thought Rob was the sense of taste that bothered him, but after really thinking about it, Casey is the one with more issues. How I never noticed that is beyond me.

Hopefully, once you see a pattern in how your child tastes, you can come up with a plan to help them experiment with new foods. Just remember, taste is also affected by smell, touch and sight, so you may have to do more digging into those senses before you really know what is going on with your child.

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Autism and Sensitive Ears

Autism and Sensitive Ears

Since sensory issues are one of the questions I hear most often, I thought the next few weeks, I would talk about each of the six senses and how they affect people with autism. Remember – senses can be “hyper” which means too sensitive or “hypo” which means not sensitive enough.

Because how sensitive their ears are cause Casey and Rob so many issues, I’ll start with hearing.

When Casey was younger, she kept her fingers in her ears any time we went some place new, until she knew what kinds of sounds might be present. It wasn’t just loud piercing noises that could cause her to scream in pain – even low, rumbling noises could be terrifying to her.

It took me a long time to understand why she hated certain restaurants so much. Because of her screams, we just avoided going to them, but finally, I heard it. The HVAC systems were running and she couldn’t handle the noises they made. Honestly, I could barely hear it and probably would have never realized it, if I didn’t happen to see her looking up at the vents with a terrified look on her face. It took years before we attempted those places again (thank God for drive-thrus! 🙂 )

I avoided using the air conditioning in our car when she was young because it was guaranteed to set off screams. Even on the hottest days, we left windows down. I tried once to turn it on and she panicked and tried to get out of the moving car. Again, it was years later before we used it and now, she doesn’t have any issues with it at all.

Casey was 5 when we decided to try Auditory Integration Therapy. At the time, it was best hit or miss, but her dad and I both felt like it was something we had to try. My mom and I took the three kids to Cincinnati for two weeks. Casey was 5, Mandy 3 and Rob just 9 or 10 months old. Yep – we lived in a hotel for two weeks. Casey had hour long sessions twice a day. And she didn’t like it – at all. After a few days, she settled down for them but still was happy to be out of the room.

She started on Monday. Friday evening, their dad and my dad came to spend the weekend with us. Saturday morning, my dad asked Casey what she wanted for breakfast (we always asked her questions – even when she never answered) and she said, “Donut!” I wish there had been a camera on us – four adults were in complete shock. She never answered questions! I couldn’t get her a donut fast enough – I would have given her a box of them if she would have asked.

Over the next several weeks, she needed to cover her ears less and she began to speak a little more. Her words were clear and appropriate. Her painful screams diminished. For Casey, AIT was a success. She still covers her ears at times, but she has learned what might hurt and doesn’t panic and run like she used to.

Enclosed areas with crowds of people are hard for both of them to handle. The dull roar of people talking – the sounds of people moving around – it’s just too much for them for very long.

Rob never put his fingers in his ears like Casey does. When he was little, he wore ear protection (like hunters do) everywhere. The fire drill at school could send him into a curled up ball of tears. Train whistles, parades, certain music – it was all painful to him. He wasn’t able to filter out background noise to hear what I was saying clearly, so many of his words were mixed up. Sammerich (sandwich), to-par (pop tart), and so many others that he switched like first and last letters. He simply couldn’t hear the words clearly.

As he has grown up, his words have become much clearer, but he still struggles with new things. He still doesn’t seem to hear everything correctly – I’ve discovered that by watching him try to spell things as he hears them. Again, this is constantly getting better and is rarely an issue now.

I am still very careful about loud noises around Rob. He doesn’t run from the shop vac, anymore, and doesn’t care about kitchen appliances (Casey screamed any time I used the mixer or sweeper) but loud trucks are sure to cause pain. When we went to a parade a few years ago, a bug truck blew its air horn and he about came out of his seat. He was anxious and scared, so Mandy, Cory and I took turns standing behind him with our hands over his ears so he could enjoy the rest of the parade.

I’m sure I’ve shared before that Rob is my little weatherman. I know when the barometer changes, he can feel it. He knows when rain or snow is coming. About a year ago, I finally discovered he feels it in his ears. I don’t know why or how, but that’s how he knows. His ears can feel the difference in pressure. He also doesn’t like wind – constant wind causes extreme anxiety for him and I’m sure it’s the constant sounds of it that get to him.

When your child is first diagnosed, it may be hard for you to know what is going on with their hearing. It took me a long time to realize what was going on with Casey – at that time, there weren’t a million books about sensory issues to read. Everything I did was by guess and hope for the best. I noticed it much sooner with Rob, as I was looking for it. He loved his headphones (they also provided deep pressure and he loved that) Casey has never liked headphones – whether to protect her from sounds or to listen to music. She absolutely will not use them.

The most important thing to remember is certain noises, even if you don’t hear them or they don’t bother you, are painful to people with hyper-sensitive hearing. Please, don’t tell your child to stop making a big deal of sounds. They aren’t “faking” anything, but simply trying to get away from something painful. A child with hypersensitive hearing may run from sounds, scream, keep their head covered, fingers in their ears or may refuse to go into an area that is too loud for them.

Please keep in mind that your child may have hyposensitive hearing also. They may not acknowledge certain sounds, such as an alarm, or voices simply because they don’t hear them well enough. Your child may not be ignoring you when you talk – they may not be able to distinguish what you are saying.

Everyone has certain sounds that they can’t stand (nails on a chalkboard, anyone?) but we learn to adapt to those sounds or how to avoid them. You will need to help your child adapt or avoid painful noises. You may need to offer ear protection or to avoid certain places. You may need to talk to a speech or occupational therapist for ideas. Casey puts his fingers in her ears often. Rob tends to avoid or run from noises that bother him.

Whatever else you do – just remember that your child isn’t faking. It’s hard to handle sometimes, but it’s your job as the adult to help your child adapt or avoid.

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Autism and Doing Things “Our” Way

Autism and Doing Things “Our” Way

I was really struggling to decide what I wanted to write about this week. I don’t know about anyone else, but the last few weeks have been a blur. I haven’t even posted much on our Facebook page. I don’t know why – I just don’t think about it or I’m too tired. Anyway, several weeks ago, Casey used fabric markers and spray paint (for fabrics) to decorate three shirts. She had been asking to tie dye for months, but we just hadn’t gotten around to it and when she finally had a choice, she picked the other way to decorate.

But – as typical Casey – she didn’t forget about the tie dying. She absolutely loves anything tie-dyed. The brighter, the better. She even has crocs that are tie dyed (tho she rarely wears them – I don’t think they are as comfy as she thought they would be). Mandy bought her two white shirts on sale and Casey began to remind me every few days she wanted to tie-dye them. Finally, last week, I remembered to order the stuff and today, we did her shirts.

I can’t even begin to tell you how excited she was! Huge grin, eyes sparkling, dancing around. I had looked up how to make different patterns and couldn’t wait to show her.

Casey, as usual, had her own ideas.

She carefully told me where to put rubber bands on the first shirt (one snapped, so she refused to try it herself). I just started to tell her how to put the dye to make patterns when the dye started flying. She went up and down the shirt squeezing the bottle as hard as she could and all ideas for special designs went out the window. But, as I stood and watched her carefully squeeze dye where she thought it needed to be, I noticed the twinkle in her eye and the big smile on her face. And I knew what my blog today would be about. It’s really simple – there is more than one way to do things.

Sometimes, we get so stuck on how we think things should be – how children will walk down a hall, how to tie shoes, how to sit at a desk, how to hold a pencil – that we forget not everyone thinks like us. And that is even more important when you have a child with special needs. They are incredibly able to adapt situations to fit their own needs. We forget that – I think because, especially with people with communication issues – because they won’t speak up for themselves and say “I want to do it this way!”

When she finished with the first shirt, she looked at me. I knew by the look in her eyes, she was wondering how to do the other one differently. I told her she could “color between the rubber bands” and that’s what she did – in her own pattern and squeezing as much dye as she could into each area. She still had the big smile and now she was giggling about it, too. I would have missed those special moments if I had made her do it the way I thought she should.

Living with autism for more than 30 years has taught me many things but the most important is to always think outside the box. Think outside what is considered “normal.” It doesn’t matter how you get to your goal, as long as you keep making progress in that direction. I had some wild ideas to help the kids when they were little. Some worked, some didn’t. And that’s okay. We just moved on past the ones that didn’t work and kept moving forward. Don’t get caught up in “the way it’s always been done.” Just because something has always been done one way doesn’t mean there aren’t better ways to do it.

Let your child be your guide. Use their interests (obsessions) to help teach other skills. Elmo showed Casey many things and I used lots of lines from the original Willy Wonka and Wizard of Oz to help Rob understand things. He knew those movies – he understood the words so I used them in odd ways, but it worked. Always think outside the box – who cares how silly something seems, as long as it helps your child?

Casey has very definite ideas about how her clothes need to be folded and put away. Rob couldn’t care less about how they are folded, but they need to be in a certain place in his room. And both ways are okay. Their laundry is folded and not on my dining room table, so I’m happy. I’m not going to ask either of them to do their laundry the way the other does.

Your child may be having sensory issues and that may be why they can’t do things the way you think they should. Maybe your perfume is too strong. Or the lights are flickering so much they can’t concentrate. Maybe their shirt is painful or they are hungry. Until your child can tell you why they don’t want to do things your way, you have to learn to relax and be happy they will do it their way.

There are a million ways of doing things. As long as your child is making progress, who cares how they get there? Relax and be happy!

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Autism and the Non-Compliant Child

Autism and the Non-Compliant Child

I was asked a few days ago what I would do if teachers or staff tried to force Casey and Rob to always be compliant. Okay, first of all – who is going to force me to always do what others think I should? 🙂 But, seriously, it is an issue that is running rampant in schools and care facilities. What to do about the person who won’t do what staff wants them to do? And then, what to do with the staff that try to force compliance on a person? (apparently, my first thought of smacking them in the head is NOT a good option! 🙂 ).

I do understand the need for a certain amount of compliance, especially for safety reasons. Children need to learn the dangers of running off from their group (and this is a tough thing to teach children and adults with no sense of danger!) or how to play on playground equipment correctly (again, a tough thing to teach sensory seekers!). But, I do not believe that any program should be a “one size fits all” program. Every child, special needs or typical, is different and those differences need to be considered when working with the child.

When Casey was in preschool, she refused to keep her hand on the rail as the group walked down the hall. I think she simply saw no need for it, so she didn’t do it. As long as she stayed with the group, her teachers and the aide didn’t care. Other teachers, though, force children to keep that hand on the rail. Why? As long as the child is walking with the group – who cares? Will it matter tomorrow?

And besides, you have no idea why that child/person may be avoiding something. How do you know that the rail isn’t painful to them? That it may hurt their arm to walk like that? Unless that child is verbal and can tell you, you don’t know. Forcing that child to walk like everyone else is just a power trip for that teacher. Again, I mean when the child is willingly walking and staying with the group – who cares where their hand is?

Maybe the child is avoiding doing an art project because the scissors hurt their hand? Or maybe they are embarrassed because they can’t use the scissors as easily as their classmates? Maybe the glue makes them gag. Maybe they simply do not understand what is being asked of them. And when the child refuses to do the art project, they may be labelled non-compliant and the teacher becomes frustrated.

I get it – you have laid out this wonderful, fun project (to you, anyway) about Valentine’s Day and that child refuses to cut out a heart. What is wrong with the child? Don’t they know that mom will love their project? Don’t they care about mom? Seriously, folks, I’ve heard teachers make these comments. I do understand the teacher’s excitement, but what about the child?

Every time you have a child that refuses to do something, stop and ask yourself “Why?” and really think outside the box. Maybe the person is hungry, tired or sad. Maybe they are thinking about the dance they get to go to later that day or maybe they are thinking about Legos or pizza or coloring books. Maybe they are wondering where the teacher got those cool socks. Teachers and staff tend to take non-compliance personally and usually, it has nothing at all to do with them.

I once taught a little guy who has autism and ODD (oppositional defiant disorder). He would sign that he wanted to go outside, but if you said, “Ok, let’s go” he would refuse every time and I ended up standing in the hall while he sat. He went against everything that was said to him – even if it was something he wanted to do. It was his disorder. I soon learned if he wanted to go outside, not to say a word, but to go get my coat and he would happily follow, because it was his idea. I spent a lot of time sitting in the hallway while he hung upside down as he tried to decide whether he wanted to do what I suggested or not. (I have to say – even with all of that, he is one of those little ones that gets into your heart and never leaves. He always has a smile for me when I see him now and it’s been years since I taught him).

Consider that the person may have sensory issues you are not aware of. Sensory issues ARE real, not just a way to get out of doing things. They are painful and distracting and stressful. If you don’t believe me, think about being put in a small room, music is playing, a candle with a strong odor is burning, the lights are flickering, the heat is turned up, the clock is ticking loudly and you are being forced to wear clothes that are itchy. And – you are told that for lunch, you are being fed something that absolutely turns your stomach. And, someone comes in and says, “Read this story. Answer the questions. And sit still, no wiggling.” Let’s see how long you last. Don’t fool yourself – you will be a grouchy mess.

And that’s what some of our kids live with every – single – day. Teachers and staff need to understand that. They also need to know that people with autism can “read” others. They know who respects and cares for them and who is only there for the money. And they will respond to those that respect them in a completely different way. If the kids know someone doesn’t like them, why in the world would they want to anything for that person? I have learned that if Casey or Rob avoids someone, there is a good reason and I should avoid that person, too.

As I said, some compliance is necessary. I believe Casey and Rob should help clean up messes they make. They need to take their medications. (although, if someone refuses to take theirs, think about their reasons. Maybe they feel worse after taking it? Maybe they don’t trust the person giving it to them? Always, always, think outside the box!) It can be very hard to discover the reasons behind many behaviors, but it has to be done.

Often, a new set of eyes can help. When you are too close to a problem, it can seem insurmountable, but someone new might see something you haven’t noticed. I’m always open to people giving me their ideas. I know sometimes I get stuck and can’t get past my irritation at the behavior or the fact that I’m just too tired. Ask for help before you do something you will regret. If your frustration is too great, walk away from the situation! One wrong action could have devastating affects on the person you are working with.

There are some people who are simply not cut out to work with people with autism. They don’t have the right temperment or passion. They may think it will be easy and when it isn’t, they get angry and do things without thinking. I get that – I’ve done that. But – our kids need to be surrounded by people who love them – not bullies who will force them to do what they are told. Yes, I do think some teachers/staff can be bullies. It becomes “You WILL do what I say, no matter what.” It becomes a battle of wills and trust me when I say this – no one is better at winning a battle of wills than a person with autism. You will not win. And if you do, it’s only because the child became bored and gave up. But, if it is truly something that child doesn’t want to do – they won’t give up.

And then you need to ask yourself “Is this the hill I want to die on?” That question was used in military strategy sessions in regards to whether holding a certain position is truly worth it. Think about it. If winning this battle meant losing your self-respect, is it worth it? Nope. It isn’t. So when things become intense and you are thinking about forcing someone with autism to do what you want, stop and think…

Is this the hill I want to die on?

Will this matter tomorrow?

If either answer is no, then walk away. The person with autism didn’t “win.” You both did.

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Autism and Very Real, Very Painful Sensory Issues

Autism and Very Real, Very Painful Sensory Issues

I’ve written many times about the sensory issues that Rob and Casey deal with every day. What continually shocks me is that people think their sensitivities are just made up – or that they are just being brats and doing what they want. Let me tell ya – I am furious when that happens!

Someone insisted Rob wear a different type of shirt to the fair last week. I wasn’t there to stop it. The heat index was well into the 90’s even in the evening. By the time Rob got home, he had blotches of red all over him and was swelled up. Thankfully, a cool shower, the AC and baby powder helped soothe his skin. He will never wear that shirt again.

Rob doesn’t choose to wear the same types of shirt because he is being a brat. He wears them because they are comfy and don’t irritate his skin. He needs those shirts to keep his anxiety in check. He needs to be accepted as he is – sensory needs and all! He is willing to try new shirts for short periods of time and that’s all I can ask of him. When he is ready, he will wear different shirts again. When that will be, I have no idea. But I’m okay with buying him what he needs to be happy.

He is often called a picky eater. While it does seem like it because there are so many things he won’t eat, it’s his sensory issues, not him just trying to get his way. Anything gooey will make him gag. He has tried new things in the last year and every gooey thing makes him gag. He keeps trying, but him eating pudding is just not that important. There are plenty of healthy choices that aren’t going to make him gag. It’s not that big of a deal. He loves fruits (fresh, not canned, tho he will eat canned pineapple) Vegetables, especially peas and corn on the cob. (He won’t touch creamed corn or peas) and most meats (except lunch meat like bologna).

He won’t eat most cookies or candy. He does love certain types of chips (like his mom! 🙂 ) He used to love spaghetti, but can’t eat it now. I’m not sure why – but I’m assuming at some point, the tomato sauce upset his stomach and he thinks it will every time he eats it.

Crowds bother him. He can handle them for short periods of time, depending on what he is doing. Certain pitches of sounds cause him pain, but that seems to be getting a lot better. He doesn’t feel pain from bruises or cuts. He doesn’t feel water that is too hot. I have no idea why he is so sensitive to the feel of clothing when he doesn’t feel other things. But – I don’t need to know why. I just know what he needs and that’s all that matters.

Clothes don’t bother Casey. She feels when water is too hot, but she also seems to not know when she is hot, if that makes sense. She wears heavy clothes on warm days, simply because the calendar in her head says she should. She doesn’t taste salt, so she wants to pile salt on everything. (I limit that!) She is more sensitive to sounds and will put her fingers deep in her ears to protect herself.

Gooey foods don’t bother her, but her doesn’t like to get anything on her hands, like paint or mud. She will let me paint her hands for a craft, but she needs to wash right away. She doesn’t feel pain from cuts, either. Several years ago, she was taking forever getting ready to go to Hopewell. When I opened the bathroom door to check on her, she was sitting on the edge of the bathtub with a box of band aids trying to stop the blood that was pouring from a 5″ cut on her leg. Apparently, her brand new mattress had a spring pop up thru it and she cut her leg in her sleep. It took 16 staples to close the cut. But – she never cried from the pain. She never told me about it.

It’s not always easy living with their sensory issues. I would love to see Rob in jeans and a flannel shirt. But it’s not going to happen right now and I can accept that. It might happen in the future – it might not. There is no way of knowing and that’s okay, too. It’s hard some days when her needs are completely different than his, but we figure it out. Probably not always in the best way, but in the best way for us.

Please, please – let your child do what they need to be happy and comfortable. I understand your frustrations, but how frustrated we are is nothing compared to the pain they feel at noises or touches. Our frustration may come and go, but their needs are constant. Imagine how you would feel if it was painful to be in certain restaurants because of the AC (Casey and Rob both avoided several places when they were smaller. We couldn’t use the AC in the car because Casey just cried.). Imagine your frustration if clothes were painful and you were forced to put them on anyway. You would have a meltdown, too.

I know parents worry about their kids getting the right nutrients when they will only eat chicken nuggets and pizza. Keep offering very small bites of other foods. And keep in mind that it might be the smell of the food that is the problem. It’s all trial and error. Yes, it’s exhausting, but you never know when your child might decide to try something new.

Your child’s sensory issues are real. They are painful. They are uncomfortable. They may just be an annoyance. Every person has different needs and to different degrees. Follow your child’s lead and let them be the amazing person they were created to be. Trying to force them to be something else will only cause pain and heartbreak for all of you.