Tag: autism mom

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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 Age Appropriate Gifts

Autism and Age Appropriate Gifts

I was scrapbooking pictures from Casey’s birthday this morning and, of course, the picture with this post caught my attention. She was so happy and excited to get a new Bert! I have a whole series of photos that shows her excitement and that made my day! You know how you feel when you find that perfect gift for someone and you see their happy smile? I felt even happier than that.

But as I was putting her pages together (with her help – she loves bright colors and the more, the better! 🙂 ) I realized that lately, I’ve seen so many posts about buying only age appropriate gifts for people with special needs. Now, before we go on – there are thousands of people with autism or other special needs who only want age appropriate gifts and that’s awesome! Go for it! But – for many, what they like are items for younger people – or other obsessions that make no sense to anyone but that person. And that’s ok!

Before we drill age appropriate into too many heads, let’s stop and think about the craziness that occurred many years ago when Beanie Babies came out. Those people who were mobbing the stores to buy the stuffed toys were not children – why was it okay for those adults to buy Beanie Babies, but it isn’t okay for Casey to love Sesame Street?

Why is okay for people to collect comic books, but it’s not okay for Rob to want Wizard of Oz items? Which, by the way, are incredibly collectable to people of all ages! Why can’t he love Mighty Morphin Power Rangers when so many adults love The Avengers? (including me!) Who decides what is age appropriate, anyway?

Rob loves Legos – and I’ve seen hundreds of pictures of “typical” adults with their intricate Lego pieces. Casey loves color by number books – and how many adult coloring books are being sold now? Thousands! Rob wants metal signs and I see shows all the time where people are buying signs for their collections.

My point is – you need to do what’s right for your child. Too many people have too many opinions about how to raise other people’s children. Ignore them. If your child wants Barney videos, buy Barney videos. If your child wants a Cookie Monster shirt, buy a Cookie Monster shirt.

I do understand the reasoning behind pushing for age appropriate items. For many of our children, their “quirks” already make them stand out and if they are walking around with a Big Bird toy, they’ll grab even more attention. I get it. But – why should I try to change my kids to fit into a “normal” mode? As Dr. Seuss said, “Why fit in when you were born to stand out?” Stand out happily, brilliantly, awesomely! This works for us – no mold fits our family and I love it!

Casey and Rob don’t care about “normal.” They don’t care what others think of what they buy or what they wear. (Rob worries about people being upset with him, but doesn’t care about shallow opinions.) They want to be happy and get to choose their new things when we go to the store. They want Santa to bring them new toys and for the Easter Bunny to hide eggs with candy (Well, Casey wants the eggs hidden – he couldn’t care less).

Remember – this is how our family feels. You need to think about each child differently, as some will only want the same things as others their age. It all depends on the person and their abilities. Casey does like getting clothes, but she doesn’t care about the brand of jeans she wears. Neither would want new phones or other gadgets many people their age would want. Your child might want those things. I’m in no way saying that what makes Casey and Rob happy is what everyone needs to do.

I’m just wishing that people would stop worrying about what they think I “should” buy for Casey and Rob. I would never dream of telling another parent what they should purchase for their child – why in the world do people feel it’s okay to tell me because they have autism?

Rob’s Easter basket included packs of cards, packages of clay and craft foam. He was so happy! He was busy for hours, cutting and ripping. Some would say it’s a waste of money to buy things he’s just going to rip up. I say, he’s happy and it’s his money, so leave him alone. Casey had very simple Easter crafts to do. Some might say they were too childish for her – but she was happy to paint her bunny figurine and it’s proudly sitting on her dresser now.

So don’t let anyone tell you what you “should” be buying for your child. Who cares what they think, anyway? What you want is to see a beautiful smile when they open their gift, just like the one on Casey’s face as she holds her new Bert. 🙂

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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 a Guessing Game

Autism and a Guessing Game

I’ve shared before that, for me, one of the hardest parts of autism is the guessing games. Is his anxiety worse? Is she sick? Why is he saying his anxiety phrase on the way to Hopewell, now? Does she mean she wants to go or is hoping I’ll tell her we aren’t? Is she tired of the same lunches? Is he?

It’s exhausting. Right now, I’m trying to figure out what’s going on with Rob. He has started several really loud quirks. I need to decide if it’s anxiety or just a habit he picked up.

Their day hab moved to a smaller building right after Thanksgiving. Rob tends to be claustrophobic and I’m sure the smaller rooms (but still the same number of people) is stressful for him. The staff has changed several times and I know he spends at least a few days with a staff person he had issues with a few years ago.

He is very loud when I pick him up some days, but is it anxiety or just that he holds himself together all day and needs to release stress with me – knowing I’ll love him no matter what? Does he need a break from there?

Today, he has been chanting his fast food spiel off and on all day – the one that always ends with him yelling coffee cup as loud as he can. I just noticed that every time I hear him start (fish sandwich, McDonald’s, Coca cola) my teeth are clenched until he yells coffee cup. I’m over it.

I’ve tried distracting him. I’ve tried talking to him. Playing with him. Hugs. Deep pressure. He’s happy to do all of that, but he starts again. Really, it hasn’t been constant – but coffee cup can burst ear drums! Is he anxious? He doesn’t seem to be. Is he bored? He has lots to do, but isn’t interested in any of it. We went for a walk and he was happy to be out, but soon after we got home, he started again.

He has a communication app on his iPad and I tried using that to see if he could tell me what he needed, but we ended up talking about animals and the sounds they make (he loves doing that – and is actually quite good… just ask the people who walked by as he gobbled like a turkey at the park! 🙂 )

I tell myself that we all have days or weeks that we don’t feel like ourselves. But how long do I let this go on? He’s doing so awesome in so many things that I don’t want to change much. And maybe it isn’t anxiety, but just that he is ready for summer and weather that isn’t constantly changing. (Every time the barometer starts changing, he feels it – that would put me over the edge.) Maybe he’s just done with winter. Maybe he’s done with masks and “virus” news. I’m sure he senses how everyone around him feels and that can’t be easy, either.

So we are back to square one. Right now, autism is irritating me to no end. I want to help him, but I don’t know how to help if I don’t know what’s going on. And he can’t tell me. I’m sure he doesn’t realize how loud he is – he’s doing it for the sensory input. Now all I have to do is figure out what I can substitute for the feeling of pressure in his throat caused by the yelling! And I don’t know where to start with that.

I’m sure the long black train serenade has just become a habit for him. It’s a way to transition from place to place and I’m okay with that. We got a new car this week and that’s when he started singing on the way to Hopewell, too – but he does it even in the old car. (I am keeping the older one, too – he asked about it for days, but seems to understand now it isn’t going anywhere). The “coffee cup” thing was only first thing in the morning – a transition from bed to his day.

I’m confused. Next weekend is the time change so that will bring a whole new set of issues. Maybe…. with autism, you just never know, right? At least the full moon isn’t the same night! Thank God for small blessings!

He is quiet and happy now. I know it takes a lot of work to get him to use his communication device correctly so I’m planning on trying that again if he starts yelling again. I’m not sure he can accurately tell me if he is anxious or bored or lonely. Those are hard concepts, even for typical people. But, right now, it’s the only option I have.

I have been told to buy ear plugs or turn up the TV. But I don’t want to cover up the sound – I want to help him feel like himself. That’s the hard part and one I know every one of you completely understands. Autism doesn’t bother me – until it hurts my kids and then I just want it to go away. I just can’t imagine being “trapped” in a body that won’t let me say what I need. I’ve heard other parents say they want to be in their child’s mind for a day. Not me – I don’t think I’m strong enough to handle the things they take in stride every day.

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Think Autism Cans Instead of Can’ts

Think Autism Cans Instead of Can’ts

Have you ever noticed how people (and I do it, too, at times) always think about what they can’t do or have instead of focusing on what they do have? And when we have children with autism that becomes an even bigger issue.

Parents compare their children to other children. My child can’t talk. My child can’t eat many things. My child can’t tie his shoes. My child can’t ride a bike. My child can’t write neatly. Can’t… can’t… can’t. And even worse, the child may hear all of this negativity – how would that make you feel if you heard every thing you can’t do listed for anyone who would listen?

Jen can’t sing. She can’t (actually, it’s more like won’t 🙂 ) cook fabulous meals. She can’t change a tire (again, more like I won’t! 🙂 ) She can’t fix the car. She is stubborn. She is impatient. She has a temper. Blah Blah Blah….

I can write all of that and not care, but if I overheard someone saying negative things about me, it would hurt. (Unless, of course, it was someone whose opinion didn’t matter to me 🙂 ) Imagine hearing things about yourself – and not being able to defend yourself or tell anyone that the words hurt. Now imagine you are a child who can’t.

And this is why we have to focus on what our kids can do and not what they can’t! And we have to be careful how we talk around them. They are always listening, even if it seems like they aren’t. (I’ve learned that the hard way – never try to plan surprises with Casey or Rob in the house – I don’t care what room they are in!)

Rob can’t tie his shoes. But he can get clothes from the dryer. He can bring the trashcan back from the street (honestly, it wasn’t too long ago that I couldn’t let him get that close to the street as he would dart away!). He can fold his clothes and he can design the most amazing things with his Legos.

Casey can’t wash her hair. But she folds laundry. She draws beautiful pictures. She sings like an angel. She can sit on the patio by herself. (again, when she was little, I didn’t dare let her out of my sight, let alone in the yard by herself!)

Besides, when you only focus on what is missing, you don’t see the positives. You drag yourself down into a hole – and take your child with you. Trust me – I know there are many days that finding something positive is as hard as finding a needle in a haystack. There will always be days like that – just don’t let yourself think only of negative. Remember that better days are always coming. (I sound like a Hallmark movie, don’t I? 🙂 )

I think every meeting about our kids should start with a list of the amazing things they can do before getting into the negative stuff. I was lucky that most of the teachers my kids had did this and it really helped me to hear that not everything was going badly. It helped me to hear that the teachers were proud of the progress, no matter how little, they had made. For every teacher reading this – please, take a few minutes and do this in IEP meetings. Help the parents remember how special their child is – they are already well aware of their child’s deficits.

Focus on every small step forward – every “can”… every time your child tries a new food – or just looks at it. When your child can put his shoes on – even if they are on the wrong feet – it’s progress! When your child can sign “yes” even if verbally, it’s still difficult. When your child calms down before a full blown meltdown. When your child can sit in a loud restaurant for a few minutes. It’s all steps forward to a future no one can predict. Celebrate every step!

Who would have thought that the child who put her head through three windows during meltdowns would be almost off her meds now? Who would have thought that the child who refused to even look at new foods is now willing to try them? Who would have thought that the child who screamed in pain at many sounds now only rarely puts her finger in her ear to block out noise? Who would have thought that the child who constantly darted away would ever walk in stores by himself?

Small steps forward and lots of “look at what they can do!” thinking. Sure, I have times that “can’ts” are in my head, but usually, I’m tired or stressed about something else and the last thing I feel like dealing with is autism. It took a long time for me to stop focusing on the can’t and start looking at the can. You can do it, too!

Because if we don’t have faith and hope for our children, who will?

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Knowing Everything about Autism

Knowing Everything About Autism

Did you know that I am an expert about autism? Yep – I was told that last week. After all, I have lived with autism for more than 30 years, I have two kids with moderate autism and lots of friends with children who have autism. And – let’s not forget I write this blog every week. So – I am an expert.

Yep – I am sure of it. I should write a book and I should charge for sharing my vast knowledge of everything autism.

I’m sure people would pay for my “blind leading the blind” approach, aren’t you?

Seriously, I could hardly write those sentences without giggling.

I am no expert. No one is. And if they tell you they are…. well, take that with a grain of salt. Because – yes, I may be an expert with Casey and Rob and I may know Tyler, Brandon, Cyrys, Adam, and Riley really well, but I am not an autism expert. Doctors know a lot, but no one knows your child as well as you do. And you will still mess up. Take yesterday for example.

We had just gotten back from shopping and Casey was trying to tell me something about Monday. Over and over she repeated what she meant and I couldn’t for anything understand what she was saying. I finally asked her to spell it – obervece. She was saying “aubervent” and I felt terrible that she was getting worked up because I couldn’t help her.

I finally text Mandy and she figured it out. Observance. She brought a slip of paper home Friday that was a reminder that their day hab would be closed Monday in “observance” of President’s day. So, Casey wanted to do some “oberservancing” – even though she had no clue what it was. I tried to explain it to her that each President had a different birthday so they “observe” them on one day in the middle.

And then – this expert of autism made a terrible mistake. I said to her it would be like celebrating her birthday a different day in March. The look on her face told me I had just screwed up. She sat straight up and reminded me 15 times when her birthday was and even when I promised to have her party on her birthday, she couldn’t let it go. She asked me several times before she was finally able to relax.

I should have known better. She loves her dates and birthdays are sacred to her. I royally messed up and she couldn’t let it go. I couldn’t fix it. For over an hour, she kept popping back into the room to remind me when her birthday was. Finally, I snapped and said, “I know when your birthday is – I was there!” Which, of course, made her stop in her tracks and think about the party that must have been happening that day. She is slightly irritated that there are no pictures of the cake and no balloons. I reminded her we were in the hospital (she knows this as she has told me before that she “got born, got cold and cried” in the hospital.

Finally, I was able to distract her with the reminder that we would be going to grandma and grandpa’s soon. And I mumbled to myself. I knew better. I knew to never bring her birthday into conversations unless it was a fun discussion. This “expert” mess up. Luckily, this was not a big deal, other than a drawn out conversation.

But, it’s also a good reminder that no matter how well you know autism, you will make mistakes. And again, no one knows your child like you do. Make doctors and teachers listen to you. Listen to their ideas (as sometimes, fresh eyes can see solutions you can’t when you are so close to the issue) but make sure they listen to you, too! Be willing to try – but also be firm if there is something you know won’t work.

There are “experts” out there that refuse to understand that they don’t know everything. It’s their way or no way. Find another expert. A true expert knows that they don’t know everything and are willing to learn from you and your child. I’ve been so lucky – only one teacher was an “expert” and she didn’t last long. And our doctors are amazing.

I’ve learned something from everyone I’ve meet on our autism journey. Some things have been more useful than others. Some things aren’t what I wanted to learn, but needed to – like how to tell someone to get the hell away from my kid, nicely. 🙂 Or to make a professional pay attention in meetings. Not skills I wanted, really, but definitely ones an autism parent needs.

I laughed at the person who called me an expert. I know it was meant as a compliment, but I am not an expert.

People with autism are like snowflakes. No two are ever alike, but they are all beautiful.