Category: autism parenting

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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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Why I Write this Blog

Why I Write this Blog

I’ll be honest. I’m not feeling particularly inspired today about writing. Nothing terrible has happened – I just couldn’t think what I wanted to write or if it even mattered if I skipped a week.

Then I thought about taking Blue (my dog) to the playground the other day. It’s completely covered in snow and we were the only ones there. She ran and sniffed while I sat and watched her.

As I was sitting there, I noticed a sign stating the playground was only for those under 12 and remembered the stares we got when Casey wanted to play on the playground a few years ago.

It is a huge wooden structure and is plenty big enough for adults. I’ve been through most of it so there’s no danger of Casey or Rob breaking something. But, as Rob was swinging and Casey exploring, I saw the stares. I heard the comments. One person pointedly read the sign a little louder than necessary. I ignored her, but most of me wanted to say, “You are obviously well over 12 – why are you playing on it?”

I didn’t, though. I watched Casey and Rob to be sure they weren’t bumping into little kids. And noticed they were the only ones being careful (though I’m sure most of that was due to them not liking strangers! 😊). Other kids were knocking each other down and not paying any attention to the smaller kids.

But – we got watched closely. We got the comments. We got stared at.

Because we were different.

And that’s why I write this blog.

So maybe the next time a family goes to a playground, they can just sit and enjoy it.

Maybe the next time a family is having dinner out and someone is flapping their hands with excitement, no one will stare.

Or if someone is sitting at the table with headphones to block the noise, they won’t hear comments.

Or if an adult gets overly excited about buying a new Elmo, no one will care – they will just enjoy her beautiful smile.

Or if another someone yells power ranger names when he sees colors together (party aisles are so tempting – everything neatly organized by color! 😊), other customers won’t blink an eye.

I do this so other parents don’t feel alone when they are tired, frustrated, scared and alone. I’ve been there – it’s a terrible feeling. Hopefully, some day, no parent – typical or special needs – feels like no one understands their life.

I do it to share hope – to show things do get better.

And, of course, I do it to share laughter, because autism can be hilarious at times. I have to laugh – it keeps me young! (Not that I haven’t cried, too, but laughter is so much better!)

So – share this blog wherever you can. Help me show the world how awesome autism can be. Help me bring more awareness and acceptance. Help me bring hope to exhausted families.

People with autism are incredible and the world needs to know it! 💙

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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.

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Autism and Big Steps Forward

Autism and Keeping Hope Alive

I have heard from other parents that Casey and Rob aren’t like their children and they don’t believe their child will ever do the things my kids are doing. First of all – they won’t if you keep that attitude! Your child “senses” you more than you know and if you don’t think they can do something, they may feel like there is little reason to try.

There are plenty of things that I’m not sure Casey or Rob will ever do – but they don’t know that. If they want to try something, I’ll be right there trying to figure out the safest way for them to do what they want. I’m not sure driving is in their future (Casey won’t even attempt the lawn mower. Rob will… but… let’s say he doesn’t always pay attention so someone is right beside him to correct turns! 🙂 ). I don’t see living on their own right now, either, but I never dreamed we would be taking shopping trips or vacations, either, and we do that.

Earlier this week, Rob brushed his teeth on his own! I am usually telling him “brush here, brush there – you aren’t done, yet, but he did it! I never dreamed they would both handle the drastic change in routine when COVID hit, but they did. I never thought Casey would participate in her high school graduation – sitting with 200 graduates, by herself and walking to the stage and back to her chair. I never thought Rob would want to try new foods or wear new shirts. The list goes on and on of “I never thought…” but they are doing things now!

But – to some people, our successes may seem too simple. Maybe we are just lucky or I have a million dollars for therapies and support staff (don’t I wish! 🙂 ). So I thought I would share a few stories from other families who also “never thought” or were told something would “never” happen. To give more people hope that their child will always be making progress, no matter how slow! Remember, small steps are still progress!

I got a message from my friend “K” the other night that her 11 year old daughter has started using the potty! She even decided on her own!

How about “B”? He has a girlfriend and drives and is hoping to find another job when the pandemic eases up.

“T” loves hanging out with friends and will go back to his job when the crisis lets up, too.

“R” no longer has violent outbursts. His parents are able to help him calm down before he gets too upset.

How about “A”? She can finally be in the same room with her brother. For years, his noise caused her such pain that she physically attacked him. Their parents were on the verge of separating so there were two houses for the kids, when “A” learned to handle being near her brother.

What about “R”? He used to be a runner with no sense of safety. He can now walk around town by himself and has a job that he loves in a school.

I also know a few that are in college – some on their own, some with supports.

I’ve known some of these young people since they were toddlers and I’ll admit – I had thoughts about what each would be able to do as an adult. And they have proved me wrong – happily.

Please – when you have bad days with autism (and we all do – don’t buy anyone’s line that autism is always easy!) talk to someone without your child hearing. You never want your child to hear that you have any doubts about how amazing they are! Vent to someone and then go right back to loving and supporting your child.

Keep your hope alive. It isn’t easy – I’ll be the first to admit I had days when I doubted we would make it through the next day without my losing my mind. When those times happen, stop thinking about the future. Think about your next breath. Think about a glass of wine or a piece of chocolate. Think about anything that will help you calm down. Days do get better. Life does get easier.

Keep on hoping! Keep dreaming! Keep your faith!

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Autism and This too Shall Pass

Autism and This Too Shall Pass

I just saw a meme that said “And this too will pass. It may pass like a kidney stone, but it will pass” and I laughed way too much at that. Cause that is life with autism at times! Casey and Rob have each had habits that I thought would drive me battier than I am at times. Those “quirks” lasted for weeks…months.. even years – till, all of a sudden, they were gone. Rob is in the middle of a quirk now that I seriously will not miss!

It started out that he just needed to say the whole phrase (it takes about three minutes to get through it all) when he was getting ready to leave in the morning. He lists fast food (he always starts with fish sandwich, McDonald’s, coca cola and progresses from there.) and restaurants. He isn’t loud when he does it. BUT – he ends with yelling “COFFEE CUP!” at the top of his lungs. KFC, Tim Horton’s (Chocolate cake yummy melt) and then coffee cup!

Yeah – it’s funny as heck. I know it is. Until – you are trying to get out of the house in the morning and he can’t put shoes or socks on while he is talking and he can’t be rushed and he won’t change and say coffee cup to end it. Or – and this has been yesterday and today – he says it all day. It hasn’t been constant – but it’s been often. And my teeth are clinching every time I hear him say “fish sandwich” until I hear the yell of coffee cup.

And then I saw the meme and I had to laugh. It’s so true. The odd little quirks that people with autism need to live with can get old quickly, but we can’t do anything but wait for them to decide not to do it anymore.

For a long time, Rob had trouble sleeping. For there to be any chance of sleep, he had to have the TV on (volume off), a night light, a fan, certain blankets and stuffed animals, a light on in the kitchen (I once changed that lightbulb at 3 in the morning!) and his CD player with a song on repeat. If anyone cares to know, I figured it out once. The song was three and a half minutes long – say four minutes with the slight break before it repeated. It played roughly 150 times every night. I tried shutting it off once he was asleep (how stupid was that?!?!). It got to the point I didn’t even hear it anymore – until one night, it wasn’t on. And he was asleep.

I thought the CD had finally died, but no. He just didn’t turn it on and he has never listened to it again. The TV is off (he refuses to let anyone turn it on at all now – God knows why!). He doesn’t care about the kitchen light or stuffed animals. He wants his nightlight and a fan. I had a hard time sleeping without the music for a few nights. 🙂

Casey insisted on doing a rather complicated set of hops, jumps and steps as she went into every door. Which isn’t a problem, really, unless a few of those steps involve jumping back out the door. She shocked many people who never dreamed she would jump back on them as they followed too closely. I learned to walk behind her so she didn’t land on some poor old person and knock them over. She couldn’t be rushed – steps couldn’t be forgotten. I don’t know when it became a quick hop in with a little kick of the other foot, but I don’t miss it. It just stopped one day.

Honestly, the only “quirk” I ever broke for them was Casey wearing gloves. She was 5 or 6 and decided that spring that since she wore gloves all winter, she wouldn’t stop. It was cute for a while. Then it was a pain in the butt, as she would lay the gloves down and not put them away. Soon, a glove came up missing. We were going to my parent’s house and she refused to leave. Mandy and Rob were already in their car seats when she hit the floor screaming and kicking because she couldn’t find her glove. I scooped her up, buckled her in her seat and listened to her scream bloody murder all the way to their house.

As soon as we got home, I searched for the darn glove so we wouldn’t have a repeat (by then it was close to June!). She never asked for it again and the next spring, she stopped wearing gloves when it got warm.

Rob’s “Long Black Train” has been around for years. It used to be his storm song, but now he has to say it – loudly – 13 times when we get in the car to come home. Once in a while, he’ll say it to sing himself to sleep. I won’t miss that when he decides he’s done with it. And I won’t miss him yelling coffee cup!

I don’t miss the impossibly strict routines we had to follow for years (we still have routines, but Casey and Rob are both more flexible about things. Unless there is a full moon, it’s windy, the weather is changing or they are hungry or tired). 🙂 I don’t miss the screams if she didn’t get a picture frame at the store. Sometimes, though, I do miss all three of them as little kids. Despite the hell of autism some days, we had fun together.

So – as you listen to whatever “song” your child needs to hear or say for the thousandth time today or drive the exact same way to school or fix foods the exact same way, just remember – this too shall pass.

Like a kidney stone.

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Autism and a Sense of Humor

Autism and a Sense of Humor

One of the most common misconceptions of autism is that people with autism don’t understand humor and don’t have a sense of humor. Casey and Rob are constant reminders of how wrong that is.

Last week, Casey went shopping with her friend, Julie. Julie hasn’t been with Casey for very long and wasn’t aware that neither Casey or Rob are allowed to have gum. I have nothing against gum, but they have never understood that you just chew it and then throw it away. It’s an odd concept and I gave up trying. We just avoid it.

Casey is well aware of what she is allowed to have and what she isn’t. She bought a bag of gumballs and proceeded to eat it – all while ignoring Julie’s reminders that you don’t swallow gum. When they came home, Julie was worried. Casey, however… she was grinning ear to ear under her mask and her eyes were just twinkling with mischief. She knew exactly what she was doing. I took the rest of the gum and told her not to buy it again.

She laughed and ran to her room to color. While we were visiting my parents, I asked Casey what she was going to buy with Julie the next day. She giggled until she was shaking as she told me she was buying gum again. 🙂 (She didn’t – but I’m sure she tried. Julie was on to her tricks!)

Meanwhile, Rob was in the store with Bob. He knew he was allowed to buy four things and carefully picked out two packs of cards and was done. But, when they went to check out, he picked up five packs of cards. Bob reminded him he could only have four things (we are constantly working with them to understand money) so Rob put all of them back and went into another checkout aisle to grab cards there. Bob told him he could only have four things and that it didn’t matter which check out aisle he chose.

So Rob stood with seven packs of cards and waited for Bob to decide he was cute enough to deserve everything he wanted. I’m sure he was grinning under his mask. 🙂 He did finally put the cards away and came home. After I heard the story, I asked him about the cards. He laughed and laughed. Again, he knew exactly what he was doing.

They don’t have Hopewell tomorrow, but Bob and Ginny are coming to take them for a few hours. Rob has aquatic therapy, which he loves. Rob asked about Hopewell Monday. I told him it was closed, but that Bob was coming. He was happy – until his grinning sister said “No Hopewell Monday.”

He started to get anxious. I told him again Bob was coming and he could go see Erin. He relaxed – and she said again, “no Hopewell” He started rocking and humming and she just grinned and giggled. So, she was invited to leave the room while I assured him that he was going to see Bob and Erin tomorrow. She laughed all the way to her room.

But don’t think she is the only one who picks. He is just as likely to mess with her. If she is trying to reach something, he will “help” by getting it for her – and then holding it above his head so she still can’t get to it. He laughs – she gets frustrated.

I think some of the assumption that they don’t have a sense of humor comes from the lack of understanding verbal jokes. They take everything they hear so literally that understanding a pun is nearly impossible. However, they both love physical comedy – think Home Alone, the Three Stooges or Tom and Jerry cartoons.

While it is wonderful to see their eyes twinkling as they play “tricks” on people or hear their giggles, having a sense of humor is definitely something you will need, too. There will be days that they only way to get through them is to laugh. Seriously, no one will believe the circus that happens in your home and you might as well laugh about it. I have to laugh about the floor tapping and the light switch tapping and the shower curtain in just the right place and lunch boxes packed with exactly the right items… and the list goes on. Truly, I do know how funny my life sounds. And I would much rather laugh than cry about the crazy little things we live with.