Category: autism adult

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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 Age Appropriate Gifts

Autism and Age Appropriate Gifts

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and Advice Every Parent Needs to Hear

Autism and Advice Every Parent Needs to Hear

So, last week, I shared with you the hardest thing I had to admit – that sometimes, when Casey and Rob were little, autism embarrassed me. I was surprised by the response to that post – how many people thanked me for sharing that. I’m sure everyone feels that way at one point or another, but are too ashamed to admit it. After all, we aren’t supposed to say things like that.

Well, here’s another confession (and one I just talked about with my friend, Joy, yesterday)… autism sucks sometimes. There. I’ve said it before and I’ll keep saying it. There are times when it just sucks.

Does this mean that I’m not incredibly proud of Casey and Rob? No. It means, sometimes, I’m tired and I don’t want to hear someone yelling “Long Black Train” in my ear all the way home. I’ve yet to figure it out, but that’s Rob’s transition phrase from somewhere to home. He has to say it a certain number of times (Honestly, I’ve never counted – maybe I should!) when we get in the car to go home. He never says it in anyone else’s car, but instead starts as soon as they pull in our driveway. Some days, I don’t even notice it. Other days, I have a death grip on the steering wheel so I don’t yell “STOP!” at him.

It means I’m tired of her insisting that she can’t eat leftovers. I’m tired of trying to guess what’s going on when I know they don’t feel good. (She is asleep on the couch now, but I’m fairly certain it’s a sinus issue, but she can’t tell me.) I get tired of the list of fast food places that ends with him yelling coffee cup. (I still can’t figure that out – I don’t drink coffee and don’t use coffee cups – always something different and exciting here. Sorry to our neighbors who sometimes get to hear the yell at 8 in the morning. 🙁 )

I think the hardest part, though, is the stigma that you feel when you admit that autism sucks some days. The terrible guilt you feel. The worry that people will think you mean your kids are a terrible burden that you don’t want anymore, when in reality, all you mean is that you are just too darn tired to think anymore.

It means that autism in the family can be stressful – certain foods to eat, certain routines to follow, certain clothes to wear. For some families, the inability to have a conversation with your children. Casey and Rob are able to answer simple questions and will usually tell me what they need or want, but I can’t ask them what they think about a certain song or movie. I can’t ask what they did at Hopewell that day. I can’t ask if they are happy or what their dreams are. I, like most other autism parents, go with my gut on most things and hope I’m right or close to it.

The weeks that Rob didn’t feel well last month are a perfect example. He had no fever, no cough, was eating like usual…. but he was sleeping 18-20 hours a day. I kept asking if he needed the doctor and he told me no. I asked if his ear hurt – no, itches. Throat? itches. Finally, after a week, I took him to the doctor only to hear Rob was right – no ear infection, no strep. He had a virus (not COVID). Had he been able to communicate more, we might have figured that out on our own. I hate it when autism makes me worry even more about Casey and Rob.

I’m not sure why it seems special needs parents are held to a different standard when talking about their children. Maybe it’s not true, but it does appear that we get handed a lot more guilt about being tired and stressed – when we have more reason than others to be tired. Being a parent is tough some days – everyone should be able to admit it and not feel guilty. It’s normal.

If you need a shoulder to cry on or an ear to vent to, message me. I promise – I won’t judge you for your feelings. Let go of the guilt, the embarrassment and go on being the amazing parents I know you are. Stay tough – but cry when you need to. Admit when you need help. Those of us who are parents to adults with autism have been in your shoes. You will get through the tough days. Practice saying “autism sucks sometimes” – just don’t settle in those sucky days because autism is also amazing and beautiful and special. Good days and bad days – just a typical life, with some added excitement. 🙂

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An Autism Mom’s Hardest Confession

An Autism Mom’s Hardest Confession

This is a hard thing to admit, but I think other parents need to hear it – and to know it’s okay to have these feelings. I hate saying it, but… At times, I was embarassed by autism.

Now, before you get on a high horse and start telling me that no mom should ever say something like that, let me say – I was young, exhausted, inexperienced and the world was different 30 years ago. And – it’s okay for me to have had those feelings. It’s okay for you to be embarrassed or angry or sad or frustrated. It’s okay to let those feelings out.

It’s not okay, however, to take those feelings out near your child. Walk away, take a break, hide in the bathroom. The only thing your child should feel from you is love and pride.

Casey’s deep need for routine and strict schedules caused both minor and major issues while we were out and about. Only once was it a total and complete meltdown (you can read about that here) but there were many, many times she would start jumping up and down, or scream once, or grab onto me and try to shake me. I felt like every eye in the store was on me. She didn’t like being told no and didn’t have the communication abilities to talk to me so she screamed.

Casey and Rob both were runners. I had to put him in the cart in stores simply because I couldn’t keep a tight grip on both of them and still push the cart. (I have to say – even with them taking off, it was Mandy that I actually lost one time. In a water park. I told her to stay in a certain section with us, not realizing everything was connected. She made a friend and wandered off. There were thousands of little blonde girls wearing pink bathing suits! 🙁 ) When they were little, at times, I was embarrassed by the looks I got from people who had no idea why I put him in the cart and had a death grip on her.

Rob’s sensory issues made a the cart a safer place for him and I lifted him into it as long as I could physically get him in – he needed it. The lights, smells and noises in the stores were too much for him. If he was in the cart, he could cuddle under his coat or put his head in his hands so he didn’t have to see so much.

One day, two boys decided to laugh at him about being so big and being in the cart. They chose the wrong day to laugh at Rob. The second time we passed them, they again made a comment and I stopped them. When the lady with them turned to see what was wrong, I explained her boys were laughing at my son with autism. I hope those boys remember that day. And I applaud the mom who gave them holy heck right there in the store with promises of what was to come when they got home.

Honestly, that was the best thing that could have happened. Standing up for Rob and explaining why he was in the cart helped me understand I didn’t have to ever feel embarrassed. I could try to explain and spread awareness. Or, if they weren’t willing to “become aware,” I could simply tell them to go to hell. Nicely, of course. It is really empowering to know you can change some people’s attitude by simply explaining.

Being embarrassed is something every parent, typical and special needs, goes through. It’s a little harder to deal with when people don’t understand why your child (or adult!) is flapping or rocking or humming or bouncing. So – explain to them. You don’t have to share many details – simply say they have autism and move along. If that person still wants to stare or make comments, you have to decide what approach you want to take – be nice, explain more, or be a little meaner. How I handle those times depends on the day. Most of the time, I walk away. When I don’t, I try to be nice. When it’s time to not be nice, I’m not.

If you are like me, you may feel embarrassed more when your child is first diagnosed. As the years go by, honestly, fewer things your child does will surprise you and it’s easier to roll with the flow. Rob still like to repeat numbers or colors or Power Rangers when he is in stores – loudly. I remind him to use a quiet voice and we move on. I don’t think much about it anymore. My guess is you will get to that point, too.

Autism demands that you learn to let things slide (up to a point!). You will learn to ignore stares and comments. You will learn to not take things personally – from doctors, teachers, insurance companies, strangers. You will learn to be stronger than you ever thought you could be. You may not feel it all of the time (I sure don’t !) but you will be.

And maybe, someday, we will live in a world where people are just accepted for who they are and no one will ever have to feel embarrassed by autism again.

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Autism and Constant Supervision

Autism and Constant Supervision

Since I went back to school a few weeks ago, I’ve needed help with Casey and Rob for about an hour in the morning before they can go to Hopewell. My parents, Mandy and Bob (Rob’s favorite staff person) are all helping. This week, a conflict has come up and I have no one to help one day. I stressed about it and asked who I could think of if they could help, but finally came to the conclusion that I would just have to go into school late. I am lucky and grateful that I can do that, but it just reminds me again that I still need a “babysitter” for my adult children.

Never being able to leave them alone is not something you think about when they are little – no one leaves little children alone. And you are too busy to think about the future. Then, suddenly, they are teenagers or adults…. and you still need someone to be with them all the time. Forever.

Before anyone misunderstands, I do know how lucky I am. Casey and Rob don’t play with knives or matches or the stove. They don’t eat or drink things they shouldn’t. They don’t bother medicines. They don’t leave the yard or wander away at night. I am able to take a shower without worrying. Or go outside for a few minutes. Many, many autism families can’t do any of this. They have to keep an eye on their child all of the time – no breaks for the bathroom or a shower. I feel for them. It’s a tough life – you love this person so much, but at the same times, you desperately need two minutes to yourself.

But – sometimes…. I want to be able to go with my friends without worrying about who will stay with them. I want to sit by a campfire without needing to go check on them every few minutes. I want to be able to get groceries or run errands without their “help.” 🙂 They have come so far since they were little and it was nearly impossible to take them to the store by myself. (Casey had meltdowns and Rob had sensory overload – and they both liked to dart off.) We go places all the time now and I love it, but …. I just never thought I would need a babysitter for my adult children.

I never dreamed that I would be stressing over an hour on a weekday morning when they were adults. Sometimes, the reality of our situation slaps me in the face. As amazing as they are and the amazing things they learn to do every day still doesn’t make it safe for them to be alone. I doubt either would leave the house in the event of a fire (we have talked about it – many times – that they are to go to the garage when the smoke detectors go off, but they don’t even acknowledge that it is beeping). They count on someone else to keep them safe. Neither will use the phone to call for help.

I always laugh when someone tells me to just “find someone” to stay with them. Really? Like I’m going to leave my communication- challenged children with strangers? I don’t trust easily and have been burnt by some people I did trust. So, until I know someone really well, they don’t spend time alone with my kids. Period. I even have a hard time when new staff starts at Hopewell. I can’t see them interact with Casey and Rob and I can’t see what they think of the new person. So – I just don’t trust. I hate being like this, but I don’t plan on stopping.

I’ll admit – there are times I’d like to go some place and I just choose not to go instead of asking someone to stay with the kids. I know they need to learn to be with other people and I know I need time away, but I hate asking for help for “fun” things when I need help for important things, like work. I just get tired of needing help. It’s just not something I ever thought I would have to do when my kids were adults. Even when they were both diagnosed with autism, adulthood wasn’t something I had time to think about much. The here and now was always more important than the future.

But, see – the scariest part of them always needing supervision is the future. The future when I can’t take care of them anymore. The future where I have to trust someone else to watch them constantly. Mandy and Cory always tell me not to worry – that Casey and Rob will always have them and I love them for that, but they need their own lives, too. I don’t let myself dwell on the future much as, sometimes, those thoughts are guaranteed to bring on a crying fit.

So we’ll go on, as we have been. Doing things together and taking an extra person when I may need more than one set of eyes. (Don’t let their size fool you – Casey and Rob are fast!!) Even going to the bathroom when we are out is hard – I can’t assume they will stand and wait for me. Some days, they would. The next time – that’s a big no! See? Unless you have a child with autism, you wouldn’t think about not being able to go to the bathroom if you are not at home. It’s something we all live with.

I hope each of you has someone you can trust to be with your kids when you need a break. Take breaks and take care of yourself or you will burn out. Then who will take care of your child with autism? Just like when you are on a plane – put your oxygen mask on first, so you can help others. 🙂

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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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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 a Busy Week Back in a Changed Routine

Autism and a Busy Week Back into a Changed Routine

Last Sunday evening, Casey, Rob and I talked a lot about going back to Hopewell on Monday. I wasn’t sure about a lot of the details, but I sat with each of them and answered as many of their concerns as I could. It was hard, since I wasn’t sure about much of the routine, either, but I could tell them that I would be taking them each day (the shuttle they used to ride are now public transportation – anyone could get on with them. I’m too paranoid to let them ride with complete strangers right now) and picking them up.

I told them that they would be in the window room with 8 of their friends, but that I didn’t know who their group was. They were so excited to be thinking about going back to Hopewell, I’m honestly not sure either of them was really listening to me, beyond that there would be no shuttles right now.

Hopewell is opening later, so we could sleep in and not have to rush around Monday morning. How crazy is it that it took me forever to pack their lunches? Three months of not packing lunches was great and I just couldn’t think what they each liked to have in their lunch. They were both up earlier than they needed to be – too excited too sleep in. Rob even put a new shirt on without a fight! They both giggled and giggled as we waited until it was time to go.

When we got there, Rob wanted to go into the cafeteria, as that was their usual routine. They gathered in that room before starting their day. He got a little anxious when I wouldn’t let him go in and then a stranger was trying to make him go to the big room. He started flapping at his ears – getting worked up. Casey ran down the ramp to the window room, but she couldn’t get to her locker. She turned and looked at me. Rob was really stomping by then because he couldn’t get to his locker. (They had to build a “wall” to separate the two groups – they are not allowed to be near each other because of the COVID – 19 worry.)

I was close to tears as I left. I could feel their anxiety and worried all day that they were not listening to their staff person – that they were taking their masks off or running to other areas of the building. (In normal times, they have several rooms that they can go to for different activities). Bob and Reagan picked them up right after lunch for their usual fun time. Rob went to aquatics – Casey got ice cream and a coloring book.

When they were dropped off at home, they were both happy and smiling so I took that to mean their day was good. I got a text later that said they both did well and that the staff was working to iron out some bugs in the routine to make it easier for everyone.

Rob still seems happy to be going to Hopewell, even with the changes. They have to have their temperatures taken as soon as they enter the building and they stay in one large room all day. I need to find out what they are doing all day. They have both brought crafts home, but I know they will both get bored with that at some point.

I think Casey might be already. She thinks of Hopewell as a social place. She is used to going out of the building most days to volunteer or for walks. They are not leaving the building and she is already asking for her “trip” papers. I told her there wouldn’t be any trips and she is not a happy person. Wednesday evening, she was working herself up into a major meltdown until I told her that we were still going to do our plans for the summer.

We made a list of things they both want to do this summer and I told her we would still do them. She asked about Hopewell and thought it was funny when I told her if we wanted to do something, we would just skip Hopewell. But, then, she wanted to start writing on her calendar when we would be hiking and swimming. I tried to explain to her that we can’t write things like that because we have to watch the weather and she managed to work herself up again.

When she gets in one of these moods, she flips her head and her eyes get very intense. She can’t stop asking questions – always the same ones over and over until I am ready to scream. But I also have to walk a thin line, as if I get upset, then she escalates quickly. I’m sure part of the issue was being tired after a long week and partly, being upset that Hopewell has changed in ways she can’t understand and doesn’t like.

By Thursday, she was focused on going hiking and taking pictures and refused to hear anything but that we would go. Luckily, she was happy with a short walk and posing for a few pictures on our way to my parent’s house. But, yesterday, she started in again about canceling Hopewell on Wednesday and going to a state park for a long hike. She doesn’t want to hear that we can’t plan anything outside right now because of stormy days coming. She wants to hear she can do everything she wants. (don’t we all want to hear that?? 🙂 )

I am worried that this is going to be our new normal. He is going to want to go to Hopewell and she is going to want to skip it. I expected their first weeks back would be stressful for both of them, but honestly, I thought it would be Rob having more issues than Casey. I was sure his anxiety would flare up with all the changes he has to deal with. She has been so relaxed about all of the changes since March, that I thought she would continue on that path.

And right there is something I’ve learned really well with autism over the last 30 years. Never expect anything, cause it will change. And usually faster than I ever dreamed it would. And it also points out how far he has come. Anxiety is something that he has had to deal with for 10 years. He has learned not to let it overcome him and tries to come to me for help before it gets out of control. I never thought that would happen.

Of all the changes that were going to happen at Hopewell, I cannot believe that I never thought about her “trips” as being an issue. That’s all on me – she loves going places and I never even thought about preparing her for staying there all day. I know how much she loves being out – definitely a “duh” moment for me.

I’m anxious to see how this week goes – to see if she is more accepting of their new normal or if I’m going to need to take drastic measures to help her stay calm. As well as she has done with everything in the last three months, I think she is finally reaching the end of her patience. (Aren’t we all?)

So fingers crossed for a nice day that we can go hiking. And for him to be okay with skipping Hopewell! It seems like this could be a rock and a hard place for me, but then I think about how quickly they change and know that worrying isn’t going to help anything. One day at a time… one step at a time.

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Autism and the End of Mom’s Patience

Autism and the End of Mom's Patience

When I was younger, I was impatient and I had a temper. While I had learned to mostly control it before I had kids, having them and living with autism taught me even more that most of the stuff I got upset over really wasn’t any big deal. I do still have very little patience for some things (slow drivers and rude people!). I let most things slide. It’s just not worth getting upset over.

That being said, last week, my little angels tried my patience. I’ll admit it (even though I know it’s politically incorrect and I’m not supposed to and all that happy crap) – they got on my last nerve. And before anyone thinks it was because of the stay at home order, nope. They were just being turkeys.

Tuesday, Rob started his “song” and repeated it for more than 8 hours. He didn’t seem to be upset – he was just talking. Honestly, I didn’t really hear him. I’ve gone deaf to his “long black train” phrase most of the time. It’s just part of him and what he needs to do to stay anxiety – free. It’s his verbal stim. When he gets loud saying it, I know something it wrong – usually the weather. So I basically heard it about 2,000 times that day. But, I really didn’t hear it, if that makes any sense.

We went for our walk and did some fun things Wednesday morning. About 2:00 that afternoon, he started again. I didn’t pay any attention to him until about 6 and I’d had enough! I just couldn’t take hearing that damn phrase anymore. I tried everything I could think of to distract him. Again, he didn’t seem to be upset – just stimming on the words. By 8, I was ready to scream or cry. He took his shower and had a snack and I thought maybe it was over. I had about a 20 minute break before he started all over again.

The thing is, I have to stay calm when I’m talking to him about it. I tell him he is hurting Casey’s ears and I’ve heard it enough. If I raise my voice, he immediately starts getting louder because his anxiety has gone through the roof because I am mad. I truly do know that he simply can’t help himself sometimes. He is just stimming – just like others flap their hands or spin things. But – after 8 hours of it the day before and almost 7 hours that day, I was done. You cannot imagine how done I was. I never thought it would end. At 9:15, I told him good night and that I loved him, thinking there was no way he would sleep that night. It was like someone flipped a switch and he was asleep. Silence. Oh my God – the silence. I actually stayed up later than I usually do just enjoying the silence.

I was really worried he would start in again on Thursday, but while he said it in the car coming home from the park (he has to say it when we get in the car to head home from anywhere) he stopped when we got home. It was truly amazing! I told him thank you for no long black train – he looked at me like I was crazy. 🙂

So everyone went to bed Thursday night and about 1:30, I woke up to discover Casey’s bedroom light was on. Usually, if I turn it off (there is a switch at the bottom of the steps) she jumps in bed and stays there. I turned it off, heard her jump in bed and went back to bed myself. About a half hour later, I rolled over to see the light was on again. And I was not happy. I went up the steps and told her to get back in bed – NOW! She giggled and did it, but I heard her (her bedroom is right above mine) dancing and thumping around all night. She was downstairs before 6:15 listening to music and giggling.

So we had to have a discussion about where she is supposed to be when it’s dark. “In da bed!” Yes, Casey. You cannot dance around all night. “Reagan!” Yes, Reagan is coming today. So – I don’t know if she was just so excited about seeing Reagan or the weather was messing her up. But – when she decided to sleep on the couch, we had another discussion about how she was NOT going to sleep all day! 🙂

So, yeah, my patience was tried last week. I still don’t know the “why” of either of the days. I have no idea why she didn’t sleep. I don’t know why the second day of his song about drove me nuts when I barely heard it the first day. I am proud of myself for not yelling and losing my cool in front of them. I am glad I controlled my temper. (I was having a fit inside my head, though! 🙂 )

Everyone that knows me knows how much I love my kids. All of them are my world. And sometimes, they drive me nuts. Parents are made to believe that they should never admit their kids are driving them crazy. We are supposed to shine rainbows and unicorns all the time and be happy, happy, happy. But – you know what? Being a parent is hard. Being a special needs parent is hard. And being a parent during a virus-driven-stay-at-home order is the toughest of all.

It’s okay to admit your kids make you want to scream at times. It’s okay to not care if their school work or chores get done that day. It’s okay to just say the hell with everything and just make it through the day. Just because they drive you crazy doesn’t mean you love them any less. So, give yourself a break. Take a breath and have a piece of chocolate or a glass of wine. Tomorrow is another day. 🙂