Month: August 2020

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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.   🙂