Month: March 2020

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Autism and Staying Home

Autism and Staying Home

I saw a meme the other day that I had to share. Basically, it said that many special needs families are staying home most of the time – that we don’t run and run with kids and other activities. And it encouraged the people who were complaining and losing their minds to consider living like this all the time. Maybe not exactly like this, as in staying home and avoiding everyone, but spending the majority of your time with your loved with with autism, because that’s what they need.

It’s true. While there are thousands of people with autism who thrive on community and doing things (in the way that they need!), there are thousands of other families who can’t easily take their loved one to the grocery store, let alone out to eat or to a park. It simply isn’t safe for them to do so they stay home. For many, many years, this was us. Casey’s meltdowns happened in the blink of an eye and Rob was a runner. It was best for us to stay home. There were times it was a very lonely life – and I know it was for Mandy, too. Casey and Rob were happier in their safe zone.

I’m not saying I didn’t take them places, but we didn’t go often by ourselves. When they got older, it was easier and we did try new things – sometimes, it went well, others is was a nightmare. But, we tried. Staying home was still their favorite place to be. The first real vacation they went on, they were 12, 9 and 8. It just wasn’t possible before that – they weren’t ready and money was tight (medications and therapy take a lot!) They all had fun and even did pretty well sleeping in strange places.

Casey traveled with her aide and teacher for school trips and enjoyed it, but Rob never did that. He wasn’t able or interested in going. After she graduated, she started enjoying new places and new experiences a lot more and now, she wants have something on her calendar every day. (That doesn’t happen – that’s just what she wants! 🙂 ) Rob is more willing to try going new places, if he is with someone he knows and trusts, but he is still happy being at home.

So far, our new “normal” is going okay. Casey doesn’t understand why we have to stay away from people, if she isn’t sick. I have explained that she may have germs and not know it, but she says “Wash your hands!” and still doesn’t understand. Rob has asked for Hopewell, but it’s not constant and he seems to accept it when I tell him it’s closed. I am shocked, to be honest. I never dreamed that they would be doing this well with this big of a change. After all, they are used to being at Hopewell five days a week and it just stopped.

Casey thought Hopewell would be open in April, but I had to tell her this morning I didn’t think that would happen – that it might be May before it opens again. She frowned as she thought about it and I waited for the anger, but she just went to her room. I doubt she will be as understanding when I have to tell her the talent show will be canceled. But, they have both amazed me so far, so who knows?

The hardest part for them is not going to Grandma and Grandpa’s house, or to see Mandy and Cory. We have dropped groceries off, but they sit in the car while I put the groceries in the garage. Casey has asked about going to their houses more than anything else. Social distancing is something she does naturally, but when she wants a hug, she doesn’t understand why she can’t have one. (It’s hard on everyone!)

So every day, we try to go for a long walk. They have their iPads and we have been doing craft projects when they are interested. Rob spent almost 7 hours happily ripping paper the other day. I have no idea why it took him so long – there wasn’t that much paper there, but he was laughing and giggling the whole time, so it really didn’t matter why he was slow. It was enough to hear his giggles. They both love painting and luckily, I always stock up on things to paint when they are on sale. The porch swing is a favorite place of Casey’s and Rob spent some time lifting weights with me yesterday.

I wish I had the words to help them understand what’s happening, but I’m not sure it would help. At some point, they will have had enough and no words will help that. I hope I am patient and strong enough to help them work through their anxiety until life gets back to our normal. Be safe, everyone.

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Autism, The Birthday Girl and Slightly Different Traditions

Autism, The Birthday Girl and Slightly Different Traditions

I’m actually having a hard time believing my sweet little girl is 32 today! No, it doesn’t make me feel old – just seems so odd to think about. She has such specific traditions that she wants for every birthday that I’ve been worried all week about her special day.

We always have special doughnuts for breakfast on birthdays, but I had no idea earlier in the week if I would be able to get to the store to get them so I asked her if it would be okay if we had them for breakfast on Wednesday – and she laughed and said yes! That is huge!! If you could have met the little girl she used to be, you would know just how big this is. You simply do not change routines – ever. And now, look at her! She’s okay with such a huge change to a day she looks forward to all year! (I did buy a little bag of powdered sugar doughnuts, just in case! 🙂 )

The birthday girl (or boy! 🙂 ) always gets to choose where we have supper from on their day. Another cause for stress for me all week – would the drive-thrus still be open today? (In Ohio, everything is closed for inside dining) Luckily, they are and she will get the Burger King she has talked about for a month. I have no idea why she is so excited about BK – we can practically see it from our house. It’s not like it’s some place we never go to! 🙂 But – Mandy will be picking it up for her soon and she’s over the moon excited about her grilled chicken sandwich! 🙂

Usually, my parents come over for dessert and to watch her open presents. They aren’t coming tonight and she seems to be okay with that. She has asked, but when I told her they have to stay home, she just giggled. (It could also be easier, because she knows their present for her is here! 🙂 ) We are going to video call them so they can still be part of the evening. We all need to do our part to stay away from each other and while I don’t think Casey or Rob understands why, they seem to be okay with it for now.

Last year, Casey chose a pie instead of cake for her birthday – we were all shocked! Cake and ice cream are just her things – every time she hears about a birthday, she wants to have cake for that person – or make sure that they are getting one. This year is the same – she chose pie. We do have to put candles on her pie and she sings Happy Birthday to herself as we sing. I’d like to know what she wishes for, but I don’t ask. If you say a wish out loud, it won’t come true! 🙂

I was looking through a box of pictures this morning and it just hit me again how far she has come. How different she is than even a few years ago. While she does still have certain issues, even those can often be worked through before they become huge problems. On her first birthday, I remember people saying how she liked being in her own little world – several times, as she would rarely look at people when they wanted to take her picture. Or really seem to care whether we were there or not. Some days, I wonder why I didn’t realize she had autism then. Except that no one knew anything about it 31 years ago.

Just now, she asked about going to Grandpa’s house tomorrow for his birthday. I had to tell her no, that we could go another day and she laughed and said another day! I am just so proud of her! She may not understand completely why everything has changed in the last week, but that she has taken it in stride this far is beyond my wildest hopes.

I want you all to remember how far she has come when you have bad days – those days when you are beyond exhausted and just don’t know what to do anymore. You have no idea how far your child will go – don’t stop dreaming and hoping and working. I can’t promise your child will accomplish everything, but I know if you never give up hope and have faith, one day, you will look back and see how far they have come, too. It may not look like our journey, but it will be amazing to you. 🙂

Be safe, everyone! 🙂

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How to Talk about Scary Subjects with a Person with Autism

How to Talk about Scary Subjects with People with Autism

Let me say first that I am not one of the people who bought 100 rolls of toilet paper and 50 bottles of hand sanitizer. But, I am one of the people concerned about the virus that seems to be sweeping across the world. (not in a totally paranoid way, but it is affecting us.)

I’ll admit – I was one who kind of laughed at the whole thing when it first started. It was a virus, for Pete’s sake, and it seemed influenza was harder on people. As more information has been shared, my biggest concern has been what to tell Casey and Rob. I am a firm believer that, even if a person with autism doesn’t speak, they DO hear you and what they hear may be scary – especially when they can’t ask questions about what they have heard.

The first hurdle was earlier last week (and really – we should have been more prepared as a week that has a time change, a full moon and Friday the 13th just isn’t going to end well, right? 🙂 ) Anyway, Casey and Rob participate in a track and field event put on by the Kiwanis in our area. Casey loves it – Rob seems to enjoy parts of it, but they both look forward to ribbons and getting a treat on the way home with me. Tuesday, it was cancelled, due to the virus threat. Rob didn’t seem too concerned.

Casey, however, was confused. She was okay with writing “cancel” on her calendar, but she didn’t understand why. I told her that people were getting sick and that Toby didn’t want her to get sick again like she was last month. She seemed to accept that – until she frowned and said “Toby sick.” So she didn’t quite get it, but she understood it was cancelled.

As the week wore on, more details came out and people went crazy in the stores here. I still have no idea why toilet paper was such a hot item – I would think food would be a concern, too? Anyway – the kids heard people talking about getting sick. Rob couldn’t vocalize his concerns and Casey struggled. She wanted to know if people needed a bucket to throw up in. She wanted them to go to Dr. Myers and get pink medicine. She wanted them to drink Sprite. I tried to explain that Dr. Myers couldn’t make everyone well (How dare I suggest such a thing? My kids think he is a miracle worker! 🙂 ).

My preschool closed for three weeks. So far, their day hab is staying open, but I’m not sure whether they should go or not. I need to protect not only them, but the people around them. It’s a tough decision and one I still can’t wrap my thoughts around. For now, they will be going tomorrow. I don’t want to scare them by keeping them home, but I also don’t want anyone to get sick. Especially this group – and my kids can’t tell me if they aren’t feeling well.

I feel for those of you with picky eaters who can’t find the few foods your child will eat. While Rob is picky, there is a wide variety of things he will eat, so that shouldn’t be a problem for us. Please remember other people’s needs as you shop for your family! And the change in routine is very difficult for our people with autism. Prepare for meltdowns. This is not the time to try new things or make huge demands. Everyone will be happier if you just relax and try to look at the bright side.

When it’s time to talk to your children about the virus, think about these tips:

  1. Always tell the truth! You aren’t protecting your child by lying – especially when they are hearing things from other people. You don’t need to share a lot of details – just say that you are staying home for a while to keep from getting sick. Use social stories if you need to.
  2. Be ready for questions and answer them simply. Tell them it’s like a bad cold and that you will be right there with them if they happen to get sick.
  3. Make the change in routine seem exciting! More time for favorite movies! Time to make crafts and read books. Time to play outside. More time for iPads, Legos and model trains. More time for Sesame Street and color by numbers. I know the change in routine will be tough if you need to quarantine – just take a deep breath and know everyone else is in the same boat.
  4. Explain why they have to wash their hands so often – and make a game out of washing them. Let them make bubbles and squish them. Sing goofy songs to make sure they are washing their hands long enough. (I made Casey and Rob use hand sanitizer after we left stores yesterday and to wash their hands as soon as they got home. They thought I was nuts. 🙂 )
  5. Assure them that you have taken precautions and have enough food. (I’ve heard some crazy stories – I’m sure my kids have, too.) Lay those fears to rest. Share everything you have done to keep them safe. Again, even if your child can’t talk, they are hearing and they may be scared. Talk to them!
  6. Don’t let your kids see your stress. Easier said than done, I know, but if they see you are scared, it will scare them more.

I pray this is over quickly and that you all stay healthy. It won’t be easy, but it will be what you make of it. Plan to relax and enjoy the extra time with your child. Put on headphones if they want to watch the same movie for the 1,000th time. 🙂 Right now, my biggest concern is Casey’s birthday coming. I really don’t want to have to tell her we can’t go get McDonald’s for supper or that we can’t get her favorite doughnuts for breakfast that day. 🙁 But – if we have to, we’ll make it through. Stay safe everyone! 🙂

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Autism and Another Perfect Storm

Autism and Another Perfect Storm

Here in Ohio, today is finally a pretty, sunny day! We haven’t had many of these – it’s been gray and raining since November and not even any snow. The beautiful blue sky is helping to raise my spirits, but I’m still feeling anxious. We changed the clocks last night. Tomorrow is the full worm moon. Friday is the 13th. A perfect autism storm! Anyone have a blanket fort I can hide in until Saturday?

Honestly, Friday the 13th doesn’t bother my kids, but when it affects others, they feel it and get stressed. Rob is especially sensitive to the moods of other people. If we could just stay home for the week, we would be much happier. Maybe. Actually, probably not. Rob finally has aquatic therapy tomorrow and I’ve been reminded for the last 5 days that the kids are going with Bob and Reagan after Hopewell tomorrow. (Their time away from each other is going amazing! I’m so happy for them!)

I know they both felt the moon changing yesterday. Casey was quiet, but she had a look on her face. She was on edge and irritable. She kept it together all day and I didn’t ask her to do much. She spent a lot of time vigorously folding her socks and blaring music. She also spent a few hours curled up on the couch under a blanket with her iPad. And that’s okay. Life goes on. Weekends like this are not the time to try new things or make too many demands. The only time she got really irritated was at supper when she wanted to put more salt and pepper in her chili after she watched me do it. I told her no and she kept pushing the limits till I threatened to throw the salt and pepper away. (Yeah – not my finest moment, but she tends to overuse salt and I am limiting it. And I wanted to eat my supper while it was actually still warm for once. 🙁 )

Rob said “Gramma Roses go sit in the house. Grampa Mack go sit in the house!” for almost three hours – loudly. With a deep voice. He was building Lego houses and was on repeat. He did finally stop saying that and moved on to list every menu of every fast food place he could think of (and he knows many – even ones we don’t go to!) I turned the TV up a little louder than usual and let him go. I am happy to report he knows which restaurants have Coke and which only serve Pepsi (I only drink Coke!) But still, by evening, I was really ready for him to talk quieter. After supper, he settled down with his iPad. Yahoooo!

He got up at his usual time today, had breakfast and went back to bed. That’s his usual routine for Sunday and I don’t mess with it. Sometimes, I think the week just wears him out – and I don’t think he always sleeps as well as I think he does. He doesn’t get up and wander the house when he wakes up anymore, so I don’t always know when he’s awake. I heard Casey folding socks, but it’s quiet again. And I’m okay with that.

I’ll be honest. I’m dreading today and tomorrow. We don’t try to adjust meal or bed times when the time change happens. I know some people try to slowly do it, but we don’t. They know when bed time is. So for the next few days, we are all likely to be tired and hungry at weird times. And when we are all tired and hungry, we get irritable with each other. I have less patience – Rob is more anxious – Casey is moody. Anyone want to visit? 🙂

I don’t care what people say about the full moon effects. As the moon gets closer to being full, my kids start acting off. And it takes a few days passed the full moon before they are back to normal. So, basically, a week every month. Some months are worse than others – I’m not sure why, but I do know this month will not be fun. I hate changing the clocks. Ohio has a bill to stop Daylight Savings Time and I’m all for it. If it will help sway politicians, I’m willing to send Casey and Rob to live with them for a week. I guarantee they will stop this nonsense. (Or drink their way through the week! 🙂 )

I found some Easter crafts they can do today and maybe we’ll make some cookies. And a walk. Days like today are for having fun and taking it easy. No demands on any of us, if I can help it. I’ve been told I’m too easy on them, but I seriously do not care what others think. If that person wants to come and take over for a day, I’ll go away and enjoy the quiet. But, really, don’t push things in the next few days. As adults, we may feel the pull of the moon, but laugh it off and push on with our commitments. And when Casey and Rob are agreeable, that’s what we do.

But – it’s not going to hurt anyone to have a relaxing day. I’m feeling anxious just knowing that they will be off today. With an autism house, you never know what feeling off will bring. Loud anxiety? Screams? Meltdowns? The need to be close to someone all day? Deep pressure? No pressure? The same comforting routine or something different to take their mind off of the anxiety? Your guess is as good as mine and it won’t be the same for anyone. Casey would probably love to go somewhere, while Rob would rather hide in his room.

I hope you are one of the lucky ones that has a child who isn’t affected by the full moon or the time chance. But, if you are like me, try to relax. In a few days, this will all be over for another month and maybe the next full moon won’t be any big deal without the time change, too. We can always hope!

Until then, have that glass of wine or eat that cookie or binge watch your favorite show. Give yourself the day to just chill out. When the moon effects are gone is time enough to clean the house or pay bills or anything else that requires too much effort. We all need time to do that and the more relaxed you are, the more relaxed your child will be. So consider this a no-demands Sunday. Make it like a holiday and just enjoy it! Good luck and hugs to all! 🙂 🙂

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Why We Need Other Autism Parents to Talk To

Why We Need Other Autism Parents to Talk To

Last week, I finally had the chance to sit down with another autism mom and talk. We usually try to get the group together, but this was a last minute thing and it was so much fun. We could talk about things that no other person, unless they are an autism parent, understands. Who else would “get” the pain of watching your child wanting a friend so badly and not having one?

Who else understands the “rules” of the house? Or the fear that another meltdown is only seconds away – even when there hasn’t been one in months? Who else worries every time they leave home about sensory issues and a child that will run away as you blink? Or finding a bathroom that your child can use?

I love having these ladies in my life. I may not see them or talk to them often, but I know that one phone call to any of them will make me feel so much better. They understand that sometimes, I just don’t like autism. It isn’t that I don’t like my kids – it’s the autism that drives me crazy at times. No, I wouldn’t change them at all – even typical kids drive parents crazy at times. 🙂

But – I wasn’t always ready for other autism parents. When Casey was first diagnosed, I had my hands full. I didn’t have enough of me to put the effort into friendships that weren’t already established. I did wish I had someone to talk to, but there weren’t other parents around. Things have sure changed in the last 30 years! I also knew that I didn’t have the time to meet other autism parents – and I wasn’t ready to talk about Casey and autism. I needed time to adjust – to figure things out for her.

And then Rob was diagnosed. But, by then, we had all adjusted. We learned (and of course, most of what I learned for Casey didn’t work for Rob! 🙂 ) and I was ready to talk about our journey. I was lucky enough to meet Brandon and his family then. Brandon quickly became one of Rob’s buddies at school and his parents are still close friends of mine.

Adam and his mom came next. And then Riley and his family. And Tyler and his grandparents. And Jalen, Cyrys, Alaina, Ryan…. the list goes on. The point is – it took a long time to build a support circle like I have. First, you have to be ready to talk about private things. Then you have to find other autism parents. It’s not easy. I get messages from people on Facebook that wonder where I am because they don’t have anyone to talk to close to them. I wish it was easier to find the support that is so needed.

By the time I met Brandon and Lillie, I was beginning to understand that the fights that Casey and I went through might help other families avoid some of the same issues. I could talk about it – once I felt like I could trust the person who was asking. I learned quickly who was asking with love and those who were just nosey. I didn’t mind answering questions from people who were curious, but the ones who just wanted to know dirty details were annoying. I might have told a few of them off over the years. Always nicely, of course! 🙂

As Cherie and I talked the other night, she said something about me being some sort of mentor for them as they learned about autism. I had to laugh at the thought that anyone would think that about me. Most days, I still feel like I’m feeling my way in the dark. Not as much as when the kids were little, but autism is always interesting and no one knows when the next “surprise” might decide to pop out. On good days, I’m confident we will handle whatever it throws at us. Other days, I think I’ll just duck and let it fly at someone else! 🙂

When you are ready, look for other autism parents to talk to. It may not be easy to find them, but I urge you to try. If you can’t, ask your child’s teacher about other autism parents or call your county board of developmental disabilities and see if there is a support group in your area. I met so many amazing parents through a support group – even if you don’t say anything, you will feel better just hearing other parents talk about the same issues you may be having.

Autism isn’t easy. Even high functioning people with autism have rough days. You will have rough days, too – days that you just want to scream or sit and cry. It’s great if you have a best friend that is always there to support you, but other autism parents can support you in ways that no one else can. If you can’t find anyone, message me! Even if we can’t talk face to face, I promise to be a listening ear for your good, bad and ugly days! 🙂