Author: jsjones116@yahoo.com

Jen is the mom of three amazing adults. Her oldest daughter and her son both have moderate autism. She is a freelance writer who is passionate about spreading awareness and hope to families with special needs.
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Autism and the Importance of Self-Care

Autism and the Importance of Self-Care

If you’ve ever been on a plane, one of the first things you hear is if the oxygen masks come down, put yours on first – you can’t help anyone if you don’t take care of you. It seems like a reasonable plan. But, would I do that? Put mine on before I helped Casey or Rob? Hmmm…. the only reason I’ll say mine goes on first is that Casey and Rob will never be on a plane. 🙂

Honestly, though, I do have a hard time with the whole self-care thing. I know the last several months, especially, I let go of things that I truly love doing because I never seemed to have time. I was busy with both jobs, with Casey and Rob, with helping Mandy and Cory move… I can make all the excuses I want, but the reality is, I have a terrible time taking time for me.

When school finished for the year, I decided that if I was truly going to live until I’m 120 (my goal so Casey and Rob will be close to 100 and will hopefully never have to live without me 🙂 ), I needed to think of me, too. I still struggle with it, but I’ve been reading every day and exercising more. I’ve started doing Yoga again and am trying to eat healthier. I am working on my crafts again and remembering how much I love creating things. Do I feel guilty about this? Yeah, sometimes.

Sometimes, as I pick up my book, I think I should be sending pitches for more writing jobs. I should be calling this person or that one or knocking a chore off of my to-do list (by the way, do chore lists ever disappear? Every time I think I’m catching up, more stuff gets added! 🙂 ) I beat the guilt back by reminding myself a stressed out person won’t live to be 120.

But – it’s not easy to put yourself first. My kids will always be more important to me and it seems there is always something I can be doing with or for them. I could be swinging with Rob or having an endless conversation with Casey. I could be building with Legos or making color by numbers for Casey. We could be practicing with their communication apps. We could be hiking together. And the list goes on.

I’ve burned out a few times in my life. Luckily for me, I just end up an exhausted, crying mess. I don’t have health issues – just emotional ones, so far. And please God, may that continue. The thing is, I know when I’m getting close to burning out. I know that when I crash, I won’t be any good for Casey and Rob. I know I need to take a break and do something for me. I know all of that – and yet, I still don’t always consider my own needs as being that important.

It’s crazy, isn’t it? To know I’m coming close to a meltdown and just keep running towards it. Do any of you ever do that?

I remember one time several years ago that I completely burned out on a Sunday morning. I couldn’t figure out what we needed to do to get ready for church. Really, I just couldn’t think. Thankfully, Casey and Rob are so routine based that they got themselves ready and we made it to church. I saw my parents and started crying. Big, ugly sobbing …. and I couldn’t stop. Casey and Rob went to their class and I sat in an office with my parents and cried. I was so tired, I could have gone to sleep right there. The sad thing? My parents wanted to take Casey and Rob home with them so I could have a break and I couldn’t agree with it. I just kept saying I was fine and I just wanted to go home.

Even in the middle of a breakdown, I couldn’t just say I needed help. I’m nothing if not stubborn. I finally agreed to go back to their house and take a nap.

Don’t be like that version of me. You won’t get any extra points in life for not accepting help. For not asking for help before you burn out. You know what you will get? Gray hair, ulcers, and an unhappy life. Autism is tough, even on the best of days. Ask for help before you burnout.

Self-care really is that important. If you crash, your child will crash, too. It’s that simple. You won’t get a gold sticker by doing it yourself. I know how full your days are. There is always something else that needs done or someone that needs help. It won’t end. Only your attitude can improve. You have got to take care of you. Consider your self-care as important as your child’s care.

The picture with this post? Yes, those are my feet as I lounged by the pool – all by myself. For the first time since I became “Mommy Jen” I went to a pool by myself. If I can learn self care, you can, too!

Find ways to relax and remember what makes you happy. Don’t make excuses about not having the time. If you don’t make the time to take care of you, you will crash and burn – and you will take your child with you.

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Autism, OCD and Irritation

Autism, OCD and Irritation

Casey has been on edge this week. While I have seen her beautiful smile and twinkling eyes often, I’ve also seen the irritable side of her. The one that OCD (obsessive compulsive disorder) grabs and won’t let go at times. She has been “off” and I’m not sure what to blame.

We did have a big storm that was supposed to hit us, but luckily, it went around. Rob was especially loud that afternoon, as the barometer dropped. The weather does affect her, but not always as bad as it does him. She was just grouchy. I completely understand that everyone has off days and they bounce back, but she’s been different for almost a week.

She’s focused on her calendar and keeps repeating things she wants to do, even when I tell her I will not put ride the rides at the fair on her October calendar, yet. Nor will I write when we will go to the water park. Or when Mandy’s baby is coming. And when I put her off and explain that I can’t write things I don’t know, she snorts and flips her hair. (Oh my God – the attitude!) She wants things written down – NOW!

She wants Cory’s car show at the fairgrounds and is irritated that it is on Main Street this year. She wants Anna’s birthday, Lacey’s birthday, July 4th, a cookout at Hopewell, and sparklers – and she wants it all written on her calendar. Now. I have written everything I can, but I can’t write that we will have cake for Anna and Lacey because I don’t know when or if that will happen. So, she snorts and flips her hair again. (Yes, her hair is short, but the way she flips her head, I know what she is doing!)

She is irritated that there isn’t any laundry in the dryer. Or that I can’t tell her what we are having for supper – tomorrow night!

But – there are happy smiles, too, so I know this isn’t something that needs addressed with her doctor, yet. If she was nothing but irritable, I’d be concerned, but she’s just picking and choosing what to get upset about and driving me nuts in the process. Because, once she gets fixated on something, as you know, she can repeat it until I want to scream. A conservative guess for discussions about the car show yesterday (it isn’t until mid July!) would be near 100.

I surprised them Thursday with a trip to the zoo. They both love the zoo. He wants to see turtles – she just likes being there. This time, she slept all the way over (about 90 minutes) and then basically stayed completely serious/on edge until we had lunch. She started asking a few minutes after we arrived – way too early for lunch. She barely looked at anything until we finally had lunch, then she perked up and looked around. She got fixated on lunch and nothing would make her happy until we ate.

Her OCD is really grabbing her lately and it won’t let go. I haven’t changed any meds, so that’s not it. She is happy between compulsions (and really, the compulsions aren’t affecting anything but our conversations, so far) so I don’t feel she needs to see her doctor. What I would like to know is why.

Is it the weather? The phase of the moon? Is she not sleeping enough? Is something going on that I don’t know about? Is she going to have anxiety issues like Rob does? Or – and most of the time, I truly believe this – is she just trying to keep me on my toes? 🙂 Wouldn’t want Mom to get too comfy in how well things are going for them, would we?

But really, that’s the autism is. You have routines for years that can’t be changed at all, then all of a sudden, no one cares about those routines. You can’t eat certain foods, then you can. You can’t wear certain clothes, then you can. You can sleep all night, then you can’t. You can eat chips, then you can’t. You can’t brush your teeth, then you can.

Autism is like dancing. Sometimes, it’s slow and steady like a waltz – the same steps repeated over and over in a beautiful pattern. And then… Irish jig time. No one tells you the steps, only that you have to keep up and not stop. And you are out of breath and wondering what the heck is going on.

Yep – been there, done that. I’m just thankful that, so far, Casey is only repeating things constantly. She isn’t getting mad or having a meltdown, just getting irritable and pushy about what she wants. I can handle this. I can answer her without really thinking if I need to. And when I get close to losing my mind…..

I offer her a cookie. It’s not bribery – it’s behavior modification. 🙂

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Autism and Tough Choices

Autism and Tough Choices

You know that I’m a big supporter of letting people with autism try new things. Whatever Casey and Rob want to try, I do my best to find ways to support and encourage them. However, there are times that I have to make tough choices – and they usually break my heart. I hate mom guilt.

Yesterday was my niece, Anna’s, graduation party. It was held at a place Rob was somewhat familiar with, but there was going to be a big crowd of people he didn’t know. Plus, the weather here has been unstable, to say the least, for the last week. Plus, it was hot and humid. Casey couldn’t wait to go – she had gotten a new shirt, just for the party. I knew Rob would not enjoy himself. I knew it. While I’m all for pushing them to try things, I also don’t set them up to fail. He may have been fine, as I wouldn’t have been there long. But, my gut told me I was asking for trouble. I knew his anxiety would go sky high as soon as he saw so many strangers.

The problem was – he heard Casey talking about Anna and Uncle Jeff and Grandma Rose and Grandpa Mack. So he started asking, too. I tried to explain to him that the party wasn’t at Uncle Jeff’s house or Grandma’s house. But he kept asking. And I felt like crying. I knew he wouldn’t enjoy it – but how could I explain that to him? When I’m always telling them both they can do anything if they would just try?

Enter – Mom Guilt.

Because, the reality is…. I knew it wouldn’t go well. And I just didn’t want to have to handle it.

Not that he would have a meltdown or run away. He would just get loud… louder…. louder…. maybe scream coffee cup or one of his other phrases. I knew Anna would be fine if he did – she’s an amazing young woman. I knew my brother wouldn’t care. But – sometimes… I just don’t want to be put in that position. So, mom guilt set in. I went back and forth arguing with myself.

In the end, I told Rob it was hot and it would be crowded. He asked for Uncle Jeff. I told him he wouldn’t be able to be in the house by himself – he would have to stay outside with me. He asked for Anna. I told him he would have to put a good shirt on. He asked for Grandpa Mack.

I didn’t want him to think I just didn’t want to take him. I’m proud of him! But – I also knew it wasn’t going to be fun for him. This is the hardest part of being an autism mom – the lack of communication. Did he understand that I knew he wouldn’t enjoy it or did he think Casey was more special than he was? So I cried some more.

In the end, I pulled out the big guns. I offered him a deck of cards to rip up and a Big Mac and fries. He stayed home. He was happier there. But I was almost in tears as I pulled out of the driveway. I never want my kids to think they aren’t welcome to go anywhere with me. I wanted him to understand that I knew he wouldn’t enjoy it and that’s why I was making other arrangements for him. But still….. autism isn’t easy.

It was good to see everyone at the party, but I couldn’t really relax. Even though I knew Rob was happily ripping up cards and waiting for his McDonald’s. Casey happily filled her plate with delicious food, watched kids for a few minutes and she was ready to go. We got Rob his supper and went home.

He seemed ok – but it still nags at me. Does he really understand that I would have loved to take him if I thought any part of it would be an enjoyment to him? If it hadn’t been so hot – if the weather didn’t already have him anxious…. the list goes on. The reality is, I know I did the right thing. But it still sucks at times. Mom guilt. Don’t you love it?

And – only another autism parent really gets how hard it is sometimes. People understand it’s hard. The people closest to us understand a little more as I’ve cried on their shoulders. But – really, only another autism parent truly understands that pain of not knowing if their child truly understands you are making a tough choice that is better for them. Communication… you don’t think about it much, until you don’t have it.

So – I still stand by my advice to always let your child try – as long as there is a possibility of success. Yesterday, Rob had too many things stacked against him. He may have made it through the party without any yelling, but he wouldn’t have liked it. He would have been stressed and anxious – and we would have paid the price when we got home.

So – let them try. But follow your gut instincts. And – don’t be afraid to just say your children are staying home because you need a break. It’s allowed. And it’s important.

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Autism and Remember When….

Autism and Remember When

I met a mom last week who is just starting her autism journey. Our meeting was a video call and she kept apologizing as she had to interrupt our conversation and help her child. She was obviously overwhelmed and exhausted and not sure what to do first or next or after that. I remember those days and wonder how we made it through certain times.

We have been watching family movies and I see Rob in constant motion – bouncing from one thing to another, usually with ear piercing happy squeals. And if we aren’t at home or at Grandma and Grandpa’s house, someone is right with him at all times. Casey is quiet in the movies. She has a super quiet voice – almost as if she is afraid someone might hear her. And it makes me sad. For family gatherings, she is often on the outside – she was encouraged to join, but for her, being on the outskirts was “safer.” Once in a while, she ventures closer, but not often and never if it is a noisy group.

Mandy’s birthday videos are full of parties and friends – Casey and Rob had cousins at their birthdays some years. I know they didn’t care – that they really didn’t enjoy being the center of attention, but still, sometimes, it makes me sad. I know it’s just their autism, but I wonder if they wished they had friends come to the house. Somehow, I doubt it. As I’ve shared before, Mandy’s best friends included Casey and Rob in everything they wanted to join and I can never thank them enough for that. Rob and Casey often mention Kenzie and Kelsey and Ryan.

As I was listening to this mom talk, I thought about the nights when I rarely got more than an hour of sleep at a time and when I did sleep, it wasn’t a deep sleep, as I was always listening for them to be wandering the house. I remember when Rob wore jeans and regular t shirts and a ball cap every where he went. Now, I know the ball cap was a security thing for him – he was never without it. He slept in it and it went back on his head before he got out of bed each day. I remember when going into stores was painful and scary for both of them and how I never thought we would be able to take any kind of vacation.

I remember the exhaustion of the school calling every… single… day. Some times, it seemed it was for the dumbest reasons. Once, when Casey was in 1st grade, they called and told me she was “stuck” on the second floor of the school. When I asked how that was possible, I was told she wouldn’t open her eyes to walk down the stairs, so she and a teacher were sitting at the top of the steps and had been for a few hours.

I told them to get her hand and start walking and she would open her eyes, but they wouldn’t. I had to go to school and walk her down the steps. She pulled that closing her eyes crap with me, but I started walking anyway – and guess what??? She popped those eyes open! She wasn’t allowed to go to the library for several weeks because her teacher was worried she would do it again. I wanted to scream at that woman. Casey got exactly what she wanted – no math class that day.

Most days, I think it’s a miracle that Rob and Casey are doing as well as they are. There were no supports, no information (unless you counted the books that blamed autism on moms not loving their children enough 🙁 ), no internet (not that you can trust everything you read on it!) and few doctors who had ever seen a child with autism. We guessed and schemed and made up things every day that might work. At that time, it was also assumed that every person with autism was just like everyone else with autism.

So when Casey started her screaming meltdowns, I was just waiting for Rob to do the same. It was a rough few years.

But, today… Mandy and I took them to a pool and spend a long afternoon together as a family. I never took my eyes off of them (and to prove autism is still there – at one point, I asked if they needed the bathroom and both jumped out of the pool. Because they had never used the restroom there, they assumed there wasn’t a bathroom). We still had to remind Rob to not bounce and splash when people were close and had to watch that Casey didn’t try to eat all of the snacks we brought when she thought we weren’t looking (I truly believe she thinks I’m blind and dumb at times!) but – they had a wonderful time!

I could actually let Rob walk back to the pool by himself while I waited for Casey to come out of the bathroom. (I had him in sight the whole time) Not many years ago, I couldn’t have trusted that he would go back to Mandy and not help himself to other people’s snacks along the way. Or that he wouldn’t take a flying leap into the pool, regardless of whether he landed on people or not.

So this is all part of what I told the mom. That she will have hard times (what parent doesn’t?), but that she and her son will get through it. Maybe not exactly like we did, but in their own way, on their own path. I reminded her to call me when she needed a shoulder to cry on or an ear to vent into. I wish I had had another autism mom to talk to when Casey was diagnosed. I didn’t meet my “autism mom” crew until Casey was 8 and Rob was 5 – now I don’t know what I’d do without them.

Find your own crew. Whether in person, on the phone, on the internet. Lean on them and let them lean on you. Message me. I’m always looking for new friends that understand the life I lead. 🙂

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Autism and Family Fun

Autism and Family Fun

Today has been a good day. It’s one of those days that, when Casey and Rob were little, I never dreamed would happen. These days do happen more often now and I thank God for that as I’m so grateful to see Casey, Mandy and Rob having fun together, with autism present, but not the main thing.

Mandy and I decided to take Casey and Rob swimming today. The pool is small, but close to our house and Casey and Rob both enjoy it. (Honestly, I think he does more than her. She likes to go anywhere – and instead of focusing on how great the water felt, she was wondering what snacks we brought. 🙂 ) He wants to run and jump in as soon as we get there, but I make him walk down the steps so he doesn’t land on anyone. 🙂

He got almost to the bottom of the steps and fell in the pool like the Lipton tea commercials – the person falls flat in the water? And then he was off to “his” part of the pool. He had his ball and an empty area – he was in heaven. He was sitting under water and bouncing up and down as high as he could go. Water is amazing to him – the pressure calms him down and he loves the feel of bouncing. Water play is sensory heaven to him.

Mandy was watching them while I went to get more sun screen. When I came back, I saw a funny look on Rob’s face. He looked at me, then back to the other side of the pool and I saw why he looked odd. His aquatic therapist, Erin, was there! He was amazed that she was at that pool and not in “her” pool at the hospital. Even after we got home, he was giggling about Erin being at the pool. And reminding me that tomorrow is Erin day and he needs his swimming stuff in the morning.

One of the best parts of the day was that Rob wanted to play catch with me! I’m not sure when we played the last time – and I know it wasn’t for more than an hour like today! Every time I thought he was done, he asked for more. I loved it! And then, to make it even better – Casey played catch with him! They only played a few minutes, but again, I don’t know when the last time they did an activity like that together was. (They do things together, but often, they are together, but not necessarily interacting with each other.) I looked at Mandy and told her that no one else in the pool realized they were in the presence of a miracle. 🙂

I share this with you to remind you again that you have to keep trying to take your child to new places. Trust me – I know it’s easier to stay home when there may be a meltdown, but your child will never learn to adjust and cope with their sensory needs if you don’t give them a chance. I’m sure a few of you are thinking that I have no idea what your child is like and you are right. I can only tell you that Casey and Rob both had major issues with stores and restaurants when they were younger (and still do, at times!) but they have learned how to cope.

They only learned that by trying and failing and trying again. We had some ugly times in stores. We got some terrible looks and even worse comments. And, I’ll admit, there were times I didn’t try, simply because I was tired and couldn’t deal with it. There are still times when I know Casey or Rob is having a rough day that we avoid going out. It’s just not worth it. If your child is already stressed, trying something new is rarely a good idea. And don’t try when you are tired or stressed.

But – try again. And again. You will have bad times. We did. You will gets mean looks and comments. We did. But, Casey and Rob are doing amazing now because we did keep trying. We celebrated the good trips and tried to forget the others. It’s not easy. Autism is not easy, Being a parent is not easy.

Start small. Maybe a five minute trip into a store to get something your child loves. Build up into longer trips. Celebrate the small victories and plan your next trip. You can do it! Your child needs you to do it!

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Why Understanding Sensory Needs is Important

Why Understanding Sensory Needs is Important

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

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

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

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

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

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

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

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

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

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

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

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

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

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Happy Mother’s Day!

Happy Mother’s Day

Happy Mother’s Day! 💙

To the moms who are still waiting to hear their child say “mommy” and the ones who hear it all day long.

To the moms who fix chicken nuggets or pizza every single day.

To the moms who are still helping their adult children with baths and showers.

To the moms who stay up late to make sure their child gets home safely.

To the moms who function on little to no sleep because their child doesn’t sleep.

To the moms struggling to keep doctors’, therapists’ and teachers’ names straight.

To the moms of escape artists who can open any lock known to man.

To the moms of dare devils who fear nothing.

To the moms who are crying in their pillows at night.

To the moms trying to think of every sensory issue their child has when they dare to leave their home.

To the moms watching their child’s meltdowns, knowing there is nothing they can do but keep them safe.

To the moms who are constantly worried about “when I’m not here, who will love my child?”

To the moms whose child desperately want friends, a job, to drive, to have their own home and don’t understand why they don’t.

To the moms of newly diagnosed children who don’t know what to do first.

To the moms who are tired – the same foods, the same routine, the same clothes, the same… The same… The same…

I know there are times you feel like the world’s worst mom. You forgot this – you are too tired for that – you got irritated at the constant verbal stimming – you can’t find the only brand of chicken nuggets your child will eat.

But – I also know that no matter what, you are awesome and amazing and stronger than you think.

Trust me. I know lots and lots of moms who don’t realize how amazing they are. You are one of them.

So, today is your day! Smile, take a deep breath and know your child is more than a diagnosis and they are lucky to have you as their mom! Keep reaching for those dreams!

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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.