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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30+ Years of Autism and I’m Still Learning

30 + Years of Autism & I’m Still Learning

For more than 30 years, autism has been front and center in our lives. I find it hilarious that some people believe that makes me an “expert.” For one, neither of my kids are alike and another… No one is an autism expert. There are many people with a vast knowledge of autism – and you are the best expert about your child! Never doubt that!

A few weeks ago, the kids and I went on a boat with friends. Casey was scared to get on the inflatable that is pulled behind the boat, but with encouragement, she finally tried. Rob wouldn’t even attempt it and I was so surprised, as I thought he would be the one to jump on without a thought. After Casey rode, I tried and tried to get him to at least walk back and look at it, but he wouldn’t. Finally, I said, “Just take your shoes off and try, buddy!” and he kicked his shoes off, stuffed his socks in his shoes and was ready to get on!

What the heck? Then it dawned on me – he never, ever gets his shoes wet. When we go kayaking, he steps into the kayak without getting in the water. When we go wading, he always takes his shoes off. And he wasn’t able to tell me that’s why he didn’t want to do it – he didn’t realize he could take his shoes off. Casey and I were barefoot, but we were wearing flip flops – he didn’t understand that it was okay for him to take his shoes off and he wasn’t able to tell me that’s why he wouldn’t get on. I simply never thought about it.

Last week, I went into Casey’s room to pull her sheets off of her bed and stepped in water! Her AC had been leaking, but she didn’t see any reason to tell me. Her carpet was soaked and she had to have stepped in it to turn the AC on and off. But, thanks to autism, she didn’t even think about telling me. I forget so often that things that are important to me (like water in the carpet!) mean nothing to them. She wasn’t able to tell me or even think that it was something that I might need to know. Thankfully, the carpet dried faster than I thought and I reminded her several times that she needed to tell me when things weren’t right. (She can certainly let me know when her iPad isn’t working!)

Rob had a problem the other day and he was acting completely out of character. If I was an autism expert, I would have stopped and tried longer to find out what was going on, but as a frustrated parent, I didn’t handle it as well as I should have. When I finally had all of the facts from the situation, I apologized to him several times. I’ll admit – as much as I try to think about every possible trigger when things happen, some times, I’m tired and that doesn’t happen.

Every day, Casey and Rob prove to me that as well as I know them, autism is an ever-changing disability that will never be fully understood by me – maybe even not by them. I don’t think they always know why they do the things they do, but only that they need to do it. Their OCD causes both of them to have rituals to feel safer – she needs to jump into doors and tap things three times. He has to have all of the windows open – except the one in the craft room always has to be closed – or all of them closed and locked. I don’t understand why, but it’s really not a big deal and helps him feel better.

I don’t know why both of them are hypo-sensitive to touch, but he can’t wear certain clothes. To my way of thinking, if your skin isn’t sensitive enough to notice a cut or burn, why can it feel the differences in shirts? He will burn himself in the shower if he turns the water on himself because he doesn’t notice the how hot the water is – but he can’t wear long sleeves because they hurt? I just don’t get it.

I don’t know why some nights, he can go to sleep easily and other nights, he is up most of the night. Usually, if she has a sleepless night, I can pinpoint why, but not him. Water is soothing to him while she barely notices it. Just like everyone else, they have their own preferences and we have to learn to separate what is “autism” related and what is just their personalities. It’s not always easy, either. Every day, I learn more about Casey and Rob.

We have rough days – days that I think autism just plain sucks. Days that I’m so tired I can’t think straight, let alone try to figure out why they do things they do. There are days that I let chores slip and that I don’t think about the future. Let yourself have those days, too. You can’t be “on” all of the time. You will exhaust yourself – and who will take care of your child, then?

Never doubt you are the expert on your child. Doctors and others may know a lot about autism, but no one knows your child like you do. Just remember – while you are your child’s expert, you will never stop learning about autism. That’s the thing about autism – it seems as soon as you solve one mystery, another one will pop up. It keeps life exciting! (I choose to look at it that way so it doesn’t drive me crazy! 🙂 )

Please, though – share your knowledge and experiences with other autism families. What worked for you may not work for them, but you never know. And maybe only part of your solution will help, but often, just knowing other families have gone through the same things, will help. We will all keep learning together to make the best lives for our families. 🙂

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Autism and an Awesome Birthday

Yesterday, Rob turned 28. While Casey has been talking about his birthday for a month, he rarely mentions it. He likes his birthday, but it doesn’t mean as much to him as it does Casey and me. I want their birthdays to always be something special. This year, Rob surprised me.

He got up early on his birthday! He had a big smile when he came out of his room. I’d like to think he was happy to see me, but I know that it was for his favorite chocolate covered doughnuts that we always have on birthdays. 🙂 I sang “Happy Birthday” to him, but he turned his back and ran for his room as soon as I was finished. (I didn’t think I sounded that bad! 🙂 )

We had talked about his birthday all week – how old he was, what he wanted for presents. He would repeat that he was going to be 28, but he didn’t care. As for presents, he just repeated what I suggested. He showed no interest at all, except for wanting Long John Silver for supper. He never asks for that except on his birthday. Unfortunately, the one in our town burned last year after his birthday and never reopened. The closest one is about 30 miles away.

All week, I thought maybe I could convince him to have KFC or Taco Bell for supper instead. Finally, Wednesday evening, I told him LJS was closed and asked if we could have something else instead. The look on his face broke my heart. He was so disappointed that he wouldn’t be having fish for supper – he was close to tears. I couldn’t stand it. I told him I would go get his LJS while he was with Bob on his birthday. (When I was in that town a few weeks ago, the dining room wasn’t open, so I knew we needed the drive-thru anyway). So, yeah – I drove almost 70 miles to get their supper last night. But – he was so happy! His smiles and giggles made it all worth it.

He bought playing cards when he was with Bob so as soon as he finished supper, he went to his room to rip them up and wait for Mandy and Cory, Grandma and Grandpa. Since he still had cards when they got here, he didn’t come right out and see everyone, but when I mentioned presents, it brought Casey running and convinced him to see what he had gotten.

He makes very few comments and rarely changes facial expressions when he is opening presents. He reads his cards and rips open the paper. He read the new signs he got and said “money” when it fell out of his card. As soon as he was finished, he grabbed the new decks of cards and ran back to his room to resume the ripping, until I asked him to come and blow out candles.

He did have a small smile on his face as I lit a few candles for him and he loudly sang Happy Birthday to himself before he blew them all out. And ran to his room again.

But that’s okay. Birthdays can be overwhelming for anyone, but when you have sensory issues, they can be even harder. The extra noise – extra people – the extra attention are all hard to handle. I’ve never made any of my kids stay in the room for their parties. They are free to do what they need to do to enjoy their day.

I’ve also never understood the reasoning for buying what you think they “should” like. As an adult, Rob should probably be thinking about a new phone, or clothes, or gift cards, or something for his car. But as Rob, a young man with autism, he wants signs for his room. He wants decks of cards to rip up. He wants foam stickers to put on his closet door. He wants foam puzzles to cut up. He wants money for more signs (tho we are really running out of room in there!). And so that what we get him. We don’t try to force “normal” things – they get what they like.

So while his day might not seem like much to most people, he had his favorite doughnut for breakfast, wore a favorite shirt to Hopewell, had taco meat in his lunch, went with Bob, had LJS for supper, saw Mandy and Cory and Grandma and Grandpa, opened presents, sang to himself, had cookies and ripped cards for more than 5 hours. It was a perfect day to him and that’s all I ever want – a special time just for them.

I encourage you to think before you plan parties for your children with autism. Be realistic – are you planning the party for them – or for you? Are they the ones who want a huge crowd with lots of balloons – or is it you? Trying to compete with your neighbors? Please – do what’s best for your child on their birthday and leave the huge party for yours!

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Why Autism Families Need a “Village”

Why Autism Families Need a Village

I’m sure you have heard the phrase “It takes a village to raise a child.”  This is even more true when you have a child with autism or any special need.  Villages are hard to find when people are intimidated or scared of your child, of your life.  Add to that the fact that trusting people around your child is so hard and families like ours often feel alone and isolated.

I don’t purposely limit our “village” but I also don’t let people in easily.  Casey and Rob (and Mandy and I!) have been hurt too often.  Even when I know someone would never hurt them, it’s still hard to let people see our “real” lives.  Reading about it here is one thing.  To actually be in it?  That’s a whole different ballgame. Maybe I just don’t want to see the look on their face when Rob starts getting loud or Casey gets upset over some little detail.

It’s easier to keep us closed off.

It’s not better for us – I do know that.  I know they need to try new things and meet new people.  I know that the best way to spread autism awareness is to be out in the community and let people see the real us.  But – it’s hard.

Last week, I was shown, again, that being open to new “villagers” can be amazing.  I have known Susie and Gene for years and years – even before Susie moved next door to us.  Since our houses are close, I know she has heard my circus – the yells and meltdowns and everything else.  But – I don’t have to see her hear it, if that makes sense.  I don’t have to see the look on her face. I can just apologize later.

So, they aren’t strangers, but it was still hard to think about spending an afternoon at a lake with them.  Susie and Gene have a boat and an inflatable ride-on to pull behind it.  I wanted the kids to have something new and exciting this summer, since we had to cancel so many things.

But….  What if Rob started his anxiety song?  What if Casey got upset?  I didn’t want to ruin their afternoon.  I was excited to go, but at the same time, I thought about canceling several times.

I worried for nothing.  Casey and Rob loved it!   When it took Casey several tries to be brave enough to step onto the inflatable, it was no big deal.  They were patient and kind.  When Rob tossed a towel (and later, a bucket) overboard, they laughed and said it was no big deal.  I was embarassed and was ready to just go home.  (Actually, had we not been in the middle of the lake, I probably would have!)

The afternoon was amazing. Not only because it was a beautiful day to be on the lake, but because I could relax and let the kids be who they are without worrying. I’m not sure Susie and Gene really understand what they did for us that day. It is more than just taking us to the lake. It was acceptance and caring. As you know, that doesn’t happen often! Our “village” grew that day.

Autism families need support and it’s hard to find. Yes, we need doctors, therapists, teachers – but we need friends just as much, if not more. We need those people who happily invite our family to their events and assure us everyone is welcome.

We need the far away friends who text, just to say hi and make us laugh. We need friends who aren’t autism parents to include us and cheer with us when our kids reach a milestone. We need shoulders to cry on and friends to lean on when life just gets too tough.

We need the support of our families (so many don’t have this and it’s so sad!). We need staff we can trust who love our kids. We need people to understand why we turn down invitations, sometimes, but who will still invite us. We need acceptance.

We need our village. And we need to let more people into our village – to love us and our kids.

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Autism and Doing Things “Our” Way

Autism and Doing Things “Our” Way

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

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

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

Casey, as usual, had her own ideas.

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

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

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

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

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

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

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

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

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How to Talk to an Adult with Autism

How to Talk to an Adult with Autism

I have to take a three hour class every year to continue to be Casey and Rob’s guardian. (Don’t panic if you don’t do this – I have discovered that even different counties in Ohio do things differently!) Yesterday, I sat through one about dementia. Honestly, I was interested in the topic as I have had some family members who had varying types. Sadly, I was bored out of my mind – they could have been talking about a person with autism.

Many different types – varying degrees of severity – medications might or might not help – how to advocate for the person…. isn’t that our lives? But – one thing that did stick out was one of the speakers was describing how not to talk to a person with dementia – as if they were a child, in a high-pitched, sing-song voice. (Even though that’s exactly how she seemed to be talking… but maybe I was just over the boredom and wanted to be done! 🙂 )

I can think of so many people that have no idea how to talk to Casey and Rob. Some, in particular, like to yell in their faces, because, you know – Casey and Rob are deaf. 🙁 I have repeatedly asked these people NOT to yell in their faces, but it goes in one ear and out the other. And those people wonder why my kids ignore them? Thankfully, they are rarely around those people. But still – how many people talk louder to someone who appears to not be paying any attention?

We have all done it. Maybe to get the person’s attention – maybe from our own frustration. Who knows? What I do know is if I talk loudly to either of my kids, they will shut down. Rob will get anxious because he thinks I’m mad. Casey will just make ignoring me a higher priority. So – always remember to use a calm, quiet voice. Trust me – they hear you whether they are acknowledging you or not. Yelling will cause a shutdown or worse.

Always speak slowly and clearly. Rob, especially, hears way too much. If there is a lot of background noise, it may take him a few seconds to understand what you said. Don’t talk with food in your mouth – don’t rush through what you want to say.

But don’t use too many words, either. Short and sweet. If you are giving directions, don’t list too many at once. I’ve spent many hours saying “Fold the blue shirt.” “Fold the black pants.” “Wash your face.” “Wash your arms.” and so on and on. Casey and Rob can follow 4 – 5 directions now, if they are familiar. If it is something new, be ready to break it down into one steps directions and be clear and concise about what you expect. It takes a while to build up to several directions at once. If we are having a rough day, we stick to one at a time. Every day is different so don’t be discouraged if you lose ground some days.

Never, ever talk to an adult with autism as if they were a child. I don’t care if you are talking about Elmo, The Wizard of Oz or Thomas the Tank Engine. Talk to the person just as you would any other adult. Casey and Rob hate to be “talked down to.” Casey will say they are “dults” not babies. Rob will just look at you as if you have lost your mind. I know it’s hard to do when you might be having a conversation about Bert and Ernie or Barney, but to the adult with autism, those characters are friends, not babyish. (By the way – I have perfected talking in “Elmo” and “Cookie Monster” voices. 🙂 🙂 My life is now complete!)

Explain what you are doing, even if you don’t think the adult with autism will understand. My kids know more than they will ever let on. I see bits and pieces come out and I’m always amazed. Rob loves to look up things on his iPad. He studies how things work on YouTube. He googles “squeaky brakes” or “broken fan” to see how to fix them. When we are baking cookies or cupcakes, I talk to them about each step we are doing. “The sugar makes the cookies sweet.” “The oven has to get hot first.” Many times, I don’t think they are really focused on what I’m saying, but then the next time we make cookies, one or the other will repeat something I said before.

Don’t use a high-pitched, fake happy voice. For one thing, the high pitch may be painful to the adult with autism who has sensitive ears. For another, even if the person functions at a child’s level, they know they are adults. You are insulting them by talking in a baby voice. Just stop it. Imagine how you would feel if someone talked to you like that. I would want to slap them, wouldn’t you?

Always, always give the adult with autism time to process what you said. This is really hard to do, as we are so used to the give and take of a “normal” conversation. I heard this tip when Rob was small and it really helped him. When I ask him a question, I count to 30 slowly before I repeat the question. Casey tends to answer quickly most of the time (if it is something she wants to answer… if not… she will ignore you forever!) Rob does much better when he is given the time to process your request and decide how to answer. Thirty seconds can seem like forever while you are waiting, but it does help. Don’t keep repeating the question – he will shut down.

On that note, try not to ask questions. Use statements instead. “Tell me what you want” is easier to answer than “What do you want?” Casey has an easier time with questions, but “why” and “how” questions are extremely difficult for both of them.

Many of these ideas will work if you have children with autism, too. Sometimes, with a child, you need to use a silly voice to get them to want to interact with you. Don’t be afraid to be silly with kids or adults! Any kind of interaction is so awesome! You may not be comfortable being silly, but try anyway. Life is too short to be serious all of the time. If I can say “Me want cookies” and “Elmo loves you” or “he he he that tickles” in character, then you can use a silly voice, too. 🙂

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Autism and Difficulty Reading Facial Expressions

Autism and Difficulty Reading Facial Expressions

So many times, I’ve heard people express their amazement that Casey and Rob each have a sense of humor – that they are deeply aware of people and react to what happens around them.  I know it’s because for years, people with autism were believed to not feel emotion or any sense of connection with others.  It’s one if the biggest myths of autism.

What Casey and Rob really have trouble with is reading facial expressions.  Actually, I’m not sure that’s right.  Maybe they can read faces, but they read people better and, often, people may be smiling while they are mad (to hide true feelings) or crying when they are happy.  (And in my case, when I’m furious, I cry.  Ugh!)

Imagine how hard it would be to understand facial expressions if people didn’t look sad every time they felt sad.  Or when people force smiles.  If you can’t ask questions about why people do such things, how would you ever be able to understand?

When Rob gets confused about how people feel versus what he sees, he gets very anxious and will try to leave the situation.  He will rub at his cheeks and begin to rock and hum.  When Casey doesn’t understand, she giggles. 

We were in Wal-Mart several years ago and a mom in the check out beside us wasn’t being very nice to her kids.  She had a toddler who was crying.  Crying babies and children are sure to make Casey giggle. She’s not laughing at the child, but rather, she’s nervous about why the child is crying.  I tried to explain that the mom was trying to help the child and told Casey to stop staring.

Meanwhile, that… Umm… Woman…  Yelled at her kids and noticed Casey giggling.  She yelled at her and when I tried to explain she had autism, she got really nasty.  At one point, she threatened to throw a two liter bottle at Casey to shut her up.   I, in my usual grace and kindness, replied with a not so nice threat of my own.  Casey giggled louder, Rob was trying to run, and I was seeing red.

A manager actually came over and dealt with that witch and I got us out of the store.  Once we were home and calmed down, Casey asked about mad baby.  I told her the woman was just not happy and that she didn’t need to worry about seeing her again. The thing is, had Casey been able to recognize the situation easier, she wouldn’t have been giggling or caught that woman’s attention.

I have discovered that if I show Casey and Rob pictures of people showing emotions, they can both tell me happy, sad, mad, tired, scared.  But if they see that same person making the same face in person, they have a much harder time.  I can only assume that they are picking up other signals from the person that may not match their facial expressions.  It’s also confusing to them that they can make a “mad” face while they aren’t actually mad, but playing or taking selfies of themselves.  (I have several sets of each of them making faces at the phone and taking pics!  🙂 )  If you can make a mad face while you are having fun, then how do you know that the person making the mad face in the store isn’t having fun, too?

It may also be harder for them to focus on a person’s whole face and not just one part at a time.  While they will both look in your eyes, neither will look long.  Casey has told me that eye’s move and she doesn’t like it.  Rob has never said why he doesn’t like to look in anyone’s eyes for a long time.  Maybe if they are focused on whether the mouth is smiling, they can’t notice the feelings in the person’s eyes.  For many people, the mouth is the first part they focus on – is it smiling?  frowning?   But, again, if your mouth doesn’t match your emotions, how can a person know?

Imagine seeing a friend who is smiling, but tears are falling and you can’t communicate your concerns.  Would you assume the person is happy because of their smile or sad because of their tears?   Add to that the social anxiety that so many people with autism feel anyway and you may just walk away without ever figuring out how they felt.  I’m sure I would – just in case they were sad, I wouldn’t wan to upset them anymore.

The sad part is, this isn’t something you can teach your child.  Because this time, tears may be happy, but next time, they may be sad.  This time, the person may be angry, but next time, they may be teasing.  Facial expression recognition may be something your child with autism will never comprehend.  It’s not concrete – it’s constantly changing from one person to the next.  What about the person who always looks angry?  Or the one that fakes at being happy all the time?  Your child will know and it will just add to the confusion.

If your child gets anxious easily, trying to decipher facial expressions may just be too much for them and that’s okay.  Even some “typical” people are oblivious to the expressions of others.  If your child is able, you may be able to help them learn to ask if someone is happy or mad or sad.  Or you can just help them understand that it’s hard for a lot of people and they just need to be kind.

Who knows?  Seeing everyone wearing masks might make things easier for our kids.  They can focus on the emotion they see in another person’s eyes and not the conflict between the eyes and mouth.  Or they can learn to treat people as they are being treated and move on.  Some things may never be understood and that’s okay for all of us.   🙂

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Autism and Little Tiny Steps Forward

Autism and Little Tiny Steps Forward

Yesterday, I heard about a Fountain of Dogs that a city not far from us has and decided to take Casey and Rob today. Casey had already asked about going for a long hike and I knew it was just too hot, so we went to the fountain instead. I knew she would like it just because we went somewhere and I thought he would because it’s water.

It is just as it’s described. A fountain with dogs in and around it – all spraying water at the center where a giant golden bone is displayed. She was laughing as soon as she saw it. He walked quietly to it and just stood there. I could almost see his shoulders relax as he watched the water sprays. Soon, he was sitting on the edge. He didn’t smile. He didn’t touch the water. He just watched. And his body became even more relaxed. When a bench in the shade became available, he moved to it and again, he was the picture of complete relaxation.

Casey, of course, had to get her picture taken with several dogs and had to try the drinking fountains (they were off because of the virus, I am assuming). She had to walk all the way around the fountain. I sat on a bench near Rob and enjoyed the fountain. As I watched them, though, it occurred to me that it wasn’t too long ago a trip like this would not have been a good idea.

For one thing, keeping Rob out of water has never been easy. He is drawn to it (aren’t many of our kids??) and can’t resist putting his hands in. He did dip his fingers this morning, but he made no effort to jump in the fountain. When he was little, I would have been sitting on him to keep him out – and Casey, too, probably. Visiting the fountain would have been an epic failure.

And – I let Casey walk around by herself. The fountain is on the corner of two busy streets (but, it’s Sunday, so not as much traffic) and even a few years ago, I wouldn’t have let her get that far from me – especially near streets. She has a history of bolting when she sees something she wants. But, today, I sat in the shade and watched her wander around and check out all of the dogs. She got right down beside a few of them and looked right in their eyes. (She even sat on a few!) Rob watched the water and never said a word.

As I sat there, I wished that the other people who were there had a clue just how huge this was for us. I wished someone else could see them enjoying something so simple – and that I was enjoying it, too. I wasn’t trying to keep her from bumping into people (she really doesn’t watch where she is going!). I wasn’t fighting to keep him out of the water. I wasn’t trying to keep him quiet. I was sitting – just like the other parents. It’s an odd feeling.

I thought of the many, many times we had to leave somewhere before everyone was ready because of autism. Whether it was a sensory overload or a meltdown from hunger or heat that they couldn’t communicate to me. Maybe it was just too much for me to keep fighting to keep one safe while the other wanted to run. Maybe I just didn’t want to deal with the stares. There have been lots of reasons why we didn’t try (or didn’t stay long!). But today – all of those little, tiny steps forward were obvious.

And that’s one thing about autism. There are always steps forward. They may be incredibly small, but they are there. Maybe your son hung up his coat or your daughter took her dishes to the sink. Maybe someone learned to put on their socks or grab their backpack as they left the house. Everything that so many other parents take for granted – we celebrate! Because, we all know, for every step forward, there will be one back. Sometimes, it feels like you are just stuck in the same place – no progress, no improvements, no reason to celebrate. I’ve felt that way – many times.

The funny thing is, I remember one particular rough time. It seemed like neither was making any progress – that we had been working on the same darn things forever and a day and weren’t getting anywhere. I was tired – fed up – discouraged – done. I just didn’t have the energy to care about those baby steps anymore. But, my aunt and uncle were visiting from Minnesota and we went to my mom and dad’s house to see them. (Honestly, I was ready to say “nope, ain’t coming” but I really missed my aunt and uncle, so I dragged the kids out of our house.) Anyway, while we were there, Rob was upstairs doing Rob stuff and Casey was sitting in the chair, smiling.

I was flopped on the couch next to my aunt when she said she just couldn’t believe how different they were from when she had seen them several months ago. I remember just looking at her wondering what she meant. She went on and on about the differences – how calm she was – how she was willing to talk a little more – how he looked at her when my aunt said hi to him – how quiet he was upstairs. And I was ashamed of myself. I couldn’t see the forest for the trees, apparently. Once someone else pointed out their progress, I could easily see it. Sometimes, it takes an outsider to show us just how much progress our kids make – every day!

When you are living the slow, steady path with all of the setbacks we see, it’s hard to see that your child is going forward! It’s happened to me, many times. You get so blinded by the long lists of what they can’t or won’t do, you forget there is a long list of what they can do! (Personally, this is one reason I hated IEP meetings so much. They were always about what Casey and Rob couldn’t do – not what they could! I thank God that their teachers always started with the list of awesome things they could do to start off. I wish all teachers could do that!) You forget that last week, he couldn’t make his bed or she couldn’t rinse her hair.

You forget that you couldn’t let go of their hands for fear they would take off. You forget that they can shower on their own and fold their clothes. You forget that they say “Hi” and name the person they are talking to. You forget that they stand for the flag and the National Anthem. You are too busy remembering he can’t tie his shoes and she can’t count money.

I encourage each of you to stop thinking about the can’ts for a few minutes and look how far your child has come. Enjoy every single one of those baby steps forward – shout it from the rooftops! Brag on Facebook! Send out texts – let everyone know about the steps forward! Those little steps are just as important as the big ones – and acknowledging those steps will keep you going during the rougher times.

Maybe one day, you will be able to sit by a fountain as your daughter explores the area and your son quietly relaxes in the shade. Nothing is impossible! 🙂

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Autism and Black and White Thinking – No Gray Areas

Autism and Black and White Thinking – No Gray Areas

Anyone who has spent time with a person with autism knows that their minds tend to work one way – very literal. They believe what you say – exactly as you say it. I still manage to say things that everyone around me would understand but that Casey and Rob take exactly as I say it.

Last week, when I washed the kids’ sheets, Rob put his on the bed and carefully put his pillows in his pillowcases. I asked Casey if she needed help or if hers were on her bed. “On bed.” So I asked if she was ready for bed. “Yes.” Two days later, I discover that her sheets are indeed on the bed – but mixed up in a pile of blankets, not actually on her bed. I pointed to them and asked why she didn’t put them on her bed. She looks at me like I’m crazy and says, “On bed.” Okay, true, they are on the bed. And I realized again that while I did say what I meant, I didn’t actually mean what I said.

Yesterday, Mandy and I were finally able to find time to take Casey and Rob to a state park swimming – with 5 dogs. Obviously, all of us would be a tight fit in one car so we split up. She was driving behind us. We had only been driving a few miles when I noticed that Rob was getting worked up. He was in the backseat and beginning to rock a little faster than is usual for him. I watched him a few minutes to see if he would calm down, but he only got more upset. When I finally asked him what he needed – Mandy! I had told them Mandy was going “with” us – and we left her at our house! She wasn’t in the car, too, so she wasn’t with us. He calmed down when I told him we couldn’t all fit and that Mandy was driving behind us. But he did have to keep turning around to check on her! 🙂

Or how about the time I told a much younger Casey to “hold her pants on” (meaning – wait a minute) only to turn around and see her holding onto the belt loops of her jeans, probably wondering the whole time why holding her pants would get her juice poured faster.

Or when I said Rob had a frog in his throat? Or that he was a little hoarse? It’s raining cats and dogs (that one really freaked Casey out!) Or asked Casey to get her clothes off of her chair (meaning – put them away!) – so she put them on the floor. And the list could go on for miles. And all I can do is laugh, because they do exactly as I tell them. There is no room for anything other than literal terms.

They don’t lie. If they don’t like something, they tell me. I made a chicken dip once and asked Casey if she liked it. “yes.” I asked if it was as good as Mandy’s. “No.” She saw no reason not to tell me – or any reason as to why Mandy’s is better. Never ask a person with autism anything that you don’t want the truth from. I actually like taking Casey with me to try on new outfits – she will always voice her opinion. She may not understand general questions, but I can say, “Does this shirt look pretty on Mommy?” and she will tell me. 🙂

On a side note – never ask if you are looking fat, tired, dirty or anything else negative, if you are hoping for a bump in your self-confidence. If you look it, they will tell you. And that’s on no one but you. 🙂

I would say that learning to be careful what you say is one of the hardest lessons for an autism parent. We all grow up with family sayings and we use them all the time. But people with autism have a hard time understanding that you don’t always mean exactly what you say – especially when you are constantly telling them they need to communicate so you can help them. It’s a difficult position to be in.

It’s hard to be always thinking about what you are saying and how to say it clearly for people with autism. Some days, Casey and Rob “get it” on the first try and other days, I might as well be talking to a wall. Either I’m not being clear enough or they just don’t care and see no reason to continue listening. (And, really, isn’t that an awesome gift? To just be able to not care and not worry that you are hurting someone’s feelings by not listening? 🙂 ) While I have worked with them since they were little to never be mean or rude, some things are just a part of their autism and I will never be able to change that. Honestly, I don’t want to – I want them to keep their independent thinking and their ability to shut out things they don’t want to hear.

Communication is often one of the hardest parts of living with autism. You have to learn to speak like an adult to one person with autism and be more childlike with another, but not so childlike that they feel you are talking “down” to them. I have a hard time with Casey and Rob at times. I find myself talking to them as kids instead of the adults they are. So I’ve learned to talk like an adult with a child’s enthusiasm and short, clear sentences. Neither of them like long rambling directions or stories. Short and to the point – details aren’t needed unless they ask.

Trust me – no matter how careful you are with what you say, you will get it wrong at some point. You will say “head over heels” or “pull someone’s leg” or “cost an arm and a leg” and you will completely freak out your child with autism. “It’s a piece of cake” will get a glare when there is obviously no cake. (Yep – I’ve said that a time or two. Casey is never pleased.)

So not only will you have to learn an entire new language of medical, educational and government terms (IEP, ISP, OT, PT, MFE, and on and on and on) you will have to unlearn a lifetime of things that you have said often without even thinking. (I’ve also noticed that every part of the country has it’s own sayings!) Or maybe not unlearn it – just learn to be careful when you say it. Sometimes, the results are funny, like Casey trying to pry Rob’s mouth open to see the frog. Other times, it just makes a bad situation worse.

I know I’ve had my share of laughs over my choices of words. I know I still (after 32 years of living with autism!) say things without thinking and then wonder why in the world the kids didn’t do as I asked. (Because I didn’t actually say what I meant, of course!) It makes life interesting some days and very frustrating others, but as long as we can eventually laugh about it, who cares?

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Autism and Mom Guilt

Autism and Mom Guilt
Autism and Mom Guilt

Later today, we finally be celebrating my niece’s high school graduation.  The party is at her grandparent’s house.  I’m feeling so guilty because I’m not taking Rob.

He is welcome, of course, and no one would mind his noises.  But, we were there the other night and he “claimed” a spot in their living room as his safe place.  Bill and Reeva don’t care, as they love him.  But – I can’t be sure he won’t go looking for things to rip up, so I will be constantly running in to check on him.  And I just don’t want to.

Yeah, I know that makes me sound terrible.  Tracie is going to help keep an eye on them, but I don’t want her stuck in the house with Rob.  She is family and should be able to relax and visit, too.  And, the weather is supposed to be stormy off and on all day.  And, I am just not feeling very patient today.  I just want to talk to people.  Selfish?  Yeah, but that’s how I feel.

Last night, I found out Mandy’s plans had changed for the day and she told me to ask him if he would rather go to her house.  Truthfully, I know he would much rather do that.  She is even going to take him out for supper somewhere.  He will be happier.  I will be happier.  Casey will be happier.

I still feel guilty.

I am a firm believer in people with autism pushing their limits.  They need to experience life and all the joy that comes with it.  They need love and support to learn about the world.  I think I do a pretty good job of pushing them.

Today, I just don’t want to.

Today, I want to take pictures of Lacey and her party guests.  I want to sit down and actually eat a meal.  I’m not sure when I did that last.  Probably lunch with Tracie on Thursday.  I want to laugh with my brother and talk to people.

I want to watch Casey have fun.  I want to wonder what she is thinking as she watches other people.  (Though, honestly, much of what she is thinking is – I’ll sneak another cookie when mom isn’t looking.  😊  Her mom isn’t as blind as she thinks!)  I want to help with anything Lacey needs or just sit and watch clouds go by.

My head knows I’m doing the right thing by taking him to Mandy’s.  He will love having her all to himself and she will spoil him.  He doesn’t really want to go to the party, anyway.

But… My heart is worried that he’ll think he isn’t wanted or welcome there.  My heart aches that he ever feel that way.  As so the war between head and heart rages.  I hate it.

I wish he was able to say he doesn’t want to go – or that he does!  It’s silly, of course, as I know Rob.  A choice between this party and Mandy is a no brainer – he will always pick her.  I feel guilty because I’m not asking him. I’m just doing what I think is best.  As a mom, that’s what I do.

But, he’s an adult and should be given choices.  And yeah, I know – he is a child in many ways and still needs guidance.  I just always try to give them choices whenever is possible.

I hate mom (or dad!) guilt.

I can hear Mandy’s voice in my head – get over it, mom.  He doesn’t want to go to the party.  😊  So that’s my plan. I still feel guilty not asking him what he wants to do.

But one thing I have learned over 30 years of living with autism… Sometimes, you gotta do what’s best for you and your other kids.  Today – that means Rob will be going to Mandy’s to be spoiled while Casey and I go celebrate Lacey.

It’s hard to do, but please – throw away the guilt and do what’s best for you sometimes.  You deserve it – you need it.

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Why We Need to Think Like a Person with Autism

Over the last several weeks, our world seems to be spinning out of control. People are protesting, rioting, arguing about masks, politics… it’s an endless stream of negativity. Honestly, I pay little attention to it – we have enough to handle in our own home with adding the drama of the outside world, too. But – I can’t help thinking that everyone would be happier if they started acting and thinking like a person with autism.

Have you ever seen a person with autism dislike someone because of the clothes they wore or how they looked? Nope. The only time I have ever heard either of my kids mention a black person was at the drive in. We were parked by a van with several teenagers of different races. They were loud and having fun and not bothering us at all. But Casey – oh man Casey…. she started stomping her feet and getting herself worked up, chanting “Black man! Black man!” I was trying to quiet her before she upset the teenagers and not having much luck.

But – I was also kind of proud of her for finally noticing someone different than herself. Until I realized she wasn’t talking about the teenagers. She was getting tired of waiting for the movie “Men in Black” to start. 🙂 (for some reason, she loves the first one of those movies!) Chanting “Black man!” was her way of asking for the movie to start!

They don’t hold it against someone if their clothes aren’t perfect. They don’t care about the car you drive. They don’t care if you have a million dollars or three quarters. If you are kind to them, Casey and Rob will accept you just the way you are – black, red, older, younger, police officer, teacher, aide – makes no difference. Just be kind to them. If you aren’t, they will remember and they will have little to do with you after that. It won’t have anything to do with how you look – it will be you, personally.

How many of us can honestly say that we have never judged someone at first site? Maybe they were dirty or they had ripped clothes. Maybe they drove a fancy car or flashed around a lot of money. Maybe they just “looked” like bad news. We have all done it – you can’t lie. I know I have. And I know that I try to follow Casey and Rob’s lead in accepting people for how they treat me and the kids instead of how they may look. It’s not always easy, but I do it. Because I would hate for people to judge me on how I look running in to a store when I’m in the middle of a project, dressed in old clothes and ran out of something to finish the project. People probably change direction when they see me coming. 🙂

Casey and Rob don’t feel the need to try to impress anyone, either. Casey simply doesn’t care what others think. Rob does, but he won’t try to make someone like him. They don’t need the “right” clothes. They don’t care about expensive vacations. They care about being with Mandy and Cory. They care about spending time with Grandma and Grandpa and Uncle Jeff and Tracie. They care about wading in a creek or watching a waterfall. They care about soft t-shirts and cute socks. They care about doing crafts and listening to music. They care about sparklers and birthdays and Easter eggs. Their presents could be nothing but socks and playing cards and they would both be happy.

They don’t force themselves to eat things they don’t like. They don’t try to change themselves to fit someone else’s image of who they should be. Their self-confidence is inspiring – and has truly helped to build mine, too. I’ve learned to like myself more – to remember that I’m okay just the way I am and I don’t need anyone’s approval of the choices I make. Try it sometime – it’s a very freeing feeling!

I want people to look at the world through a person with autism’s eyes. I want people to see the good in others, the beauty in sparklers, the peacefulness of a waterfall. I want them to see the joy in Elmo, the excitement of a milkshake, the love in a simple hug. I want the world to slow down and see what’s really important.

Will it happen? I doubt it. People are too self-absorbed most of the time. And that’s funny, because most people with autism are completely self-absorbed – the world is simply all about what makes them happy. The difference is – what makes them happy are simple things in life. Family, friends, French fries, walks, frosty’s, swinging on the porch swing, a new coloring book, a new sign, a new pack of cards, a cookie before bed. Simple pleasures in life that so many people miss because they are too worried about stuff that doesn’t matter.

This week, I challenge you to watch your person with autism and try to be like them. Slow down. Move into their world, as much as they will allow. Look at the world through their eyes and let the negativity go. It’s simply not worth it.