Category: anxiety in autism

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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 a Guessing Game

Autism and a Guessing Game

I’ve shared before that, for me, one of the hardest parts of autism is the guessing games. Is his anxiety worse? Is she sick? Why is he saying his anxiety phrase on the way to Hopewell, now? Does she mean she wants to go or is hoping I’ll tell her we aren’t? Is she tired of the same lunches? Is he?

It’s exhausting. Right now, I’m trying to figure out what’s going on with Rob. He has started several really loud quirks. I need to decide if it’s anxiety or just a habit he picked up.

Their day hab moved to a smaller building right after Thanksgiving. Rob tends to be claustrophobic and I’m sure the smaller rooms (but still the same number of people) is stressful for him. The staff has changed several times and I know he spends at least a few days with a staff person he had issues with a few years ago.

He is very loud when I pick him up some days, but is it anxiety or just that he holds himself together all day and needs to release stress with me – knowing I’ll love him no matter what? Does he need a break from there?

Today, he has been chanting his fast food spiel off and on all day – the one that always ends with him yelling coffee cup as loud as he can. I just noticed that every time I hear him start (fish sandwich, McDonald’s, Coca cola) my teeth are clenched until he yells coffee cup. I’m over it.

I’ve tried distracting him. I’ve tried talking to him. Playing with him. Hugs. Deep pressure. He’s happy to do all of that, but he starts again. Really, it hasn’t been constant – but coffee cup can burst ear drums! Is he anxious? He doesn’t seem to be. Is he bored? He has lots to do, but isn’t interested in any of it. We went for a walk and he was happy to be out, but soon after we got home, he started again.

He has a communication app on his iPad and I tried using that to see if he could tell me what he needed, but we ended up talking about animals and the sounds they make (he loves doing that – and is actually quite good… just ask the people who walked by as he gobbled like a turkey at the park! 🙂 )

I tell myself that we all have days or weeks that we don’t feel like ourselves. But how long do I let this go on? He’s doing so awesome in so many things that I don’t want to change much. And maybe it isn’t anxiety, but just that he is ready for summer and weather that isn’t constantly changing. (Every time the barometer starts changing, he feels it – that would put me over the edge.) Maybe he’s just done with winter. Maybe he’s done with masks and “virus” news. I’m sure he senses how everyone around him feels and that can’t be easy, either.

So we are back to square one. Right now, autism is irritating me to no end. I want to help him, but I don’t know how to help if I don’t know what’s going on. And he can’t tell me. I’m sure he doesn’t realize how loud he is – he’s doing it for the sensory input. Now all I have to do is figure out what I can substitute for the feeling of pressure in his throat caused by the yelling! And I don’t know where to start with that.

I’m sure the long black train serenade has just become a habit for him. It’s a way to transition from place to place and I’m okay with that. We got a new car this week and that’s when he started singing on the way to Hopewell, too – but he does it even in the old car. (I am keeping the older one, too – he asked about it for days, but seems to understand now it isn’t going anywhere). The “coffee cup” thing was only first thing in the morning – a transition from bed to his day.

I’m confused. Next weekend is the time change so that will bring a whole new set of issues. Maybe…. with autism, you just never know, right? At least the full moon isn’t the same night! Thank God for small blessings!

He is quiet and happy now. I know it takes a lot of work to get him to use his communication device correctly so I’m planning on trying that again if he starts yelling again. I’m not sure he can accurately tell me if he is anxious or bored or lonely. Those are hard concepts, even for typical people. But, right now, it’s the only option I have.

I have been told to buy ear plugs or turn up the TV. But I don’t want to cover up the sound – I want to help him feel like himself. That’s the hard part and one I know every one of you completely understands. Autism doesn’t bother me – until it hurts my kids and then I just want it to go away. I just can’t imagine being “trapped” in a body that won’t let me say what I need. I’ve heard other parents say they want to be in their child’s mind for a day. Not me – I don’t think I’m strong enough to handle the things they take in stride every day.

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Autism and the Perfect Storm Weekend

Autism and the Perfect Storm Weekend

You all know what this weekend brought to us – a blue moon (second full moon this month!), Halloween, the time change and crazy wind. I’ll be the first to admit I was dreading this weekend. Earlier in the week, Casey was irritable and Rob was anxious and loud at times. I knew it was the effects of a moon that wasn’t even full, yet.

The last six times we had to change the clocks, Rob spend that Sunday in Casey’s room yelling his long black train anxiety song for hours – like all freaking day with breaks only to eat and shower. I was almost in tears thinking about that happening today. It’s amazing how stressed a body can get listening to the same phrase 2 – 3 times a minute for 12 hours. I was tense this morning before he even woke up. I was even hoping he would sleep in a little later, even knowing that might mean he would have a hard time going to sleep tonight.

Casey wanted everything she thinks needs to happen for it to be the “right” Halloween. But – there was no dance. She was okay with this as I decided to have a Halloween party (just for a few family) but she was concerned about trick or treat and carving her pumpkin. I’m not sure why carving the pumpkins was on her mind, but she asked many times and every time, I told her we would do it on Thursday. They both enjoyed carving (and were done in about 10 minutes – the same faces every year! 🙂 ) and she started asking about a party at Hopewell and the treats she wanted to take.

I had already dropped off the treats they each wanted to take, so she switched to the costume she was going to wear. Since her fairy costume had many pieces, I told her it would be best to choose a different costume for Friday so she would have everything for Saturday night. This worked and finally, Friday, she seemed to calm down and be okay.

Rob had moments of anxiety, but nothing too bad through the week. I knew the weekend would be the hardest on both of them, but Saturday was fine. She was excited about passing out candy to trick or treaters (thank God a few showed up – we only had about 15!) while wearing her fairy costume. He couldn’t have cared less about the little kids, nor did he want to put his clown suit on. When he saw others in costume, he put on his clown hat and tie for a few minutes, but then he disappeared into his room to build Christmas trees with Legos. He didn’t even try to get any food.

I kept them up a little later last night in the hopes that they would sleep in today. She was up and down all night, but thankfully, didn’t wake anyone but me up. After he went to sleep, he came to find me to tell me his toe hurt. I have no idea what he did but he wanted medicine and a band aid and went back to sleep. Last night was fun – being around my family always makes me so happy. We laugh and tease each other constantly, but they are my biggest supporters. 🙂

I was busy when they finally woke up and could feel myself tense up when Rob came to me for his pills and breakfast. But, he leaned on me for a minute, patted my head and went back to his room. I went on cleaning, but I was still tense – just waiting for him to run upstairs and start yelling. And…. it didn’t happen. Let me say that again…. it… didn’t… happen. He played with his iPad, built more trees and had lunch.

Then he took a nap. I was worried he was sick, but he said he was tired. I put more medicine on his toe (he has a small cut on it) and let him sleep. When he woke up, I thought the long black training would start, but it didn’t. I could finally feel myself relax a little. Even though his habit of time change weekend has been the same for the last three years, today, so far, he is fine. Even with the wind threatening to blow us away, he is fine. He hates weather changes and today, it’s blowing and rainy, then blowing and sunny and then back to rain. And he seems fine. Thank you, God!

So here’s what I want you to remember from this post. On your terrible, rough days, remember things will change. Your child will suddenly decide not to do whatever it is that drives you crazy. It won’t be on your time frame, certainly, but it will happen. You don’t have to think about how you will handle this in the future because, trust me, they will think of something different. Just to keep you on your toes, of course.

During the times you are simply exhausted and frustrated with a world that can’t or won’t understand your amazing child, take a deep breath and know that changes will happen – usually when you don’t expect it. I never dreamed that Rob’s time change habit would change during a weekend of complete upheaval with a holiday, a full moon and crazy weather, but it did. I don’t care why. I’m just so glad it did. I’m so glad I could let go of the tension and take a few deep breaths.

I wish I could snap my fingers and relieve your stress, but I don’t have any magic. I don’t have any words of wisdom that will help your child instantly. All I can offer is hope from someone who has “been there, done that.” I know it isn’t much, but please, never give up hope. Your child may change as quickly and as unexpectedly as Rob’s time change habit!

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Autism and Toxic People

Autism and Toxic People

For some reason, I’ve seen a lot of posts this week about toxic people. You know the kind – the ones that are hard to be around because they are never happy and seem to bring out the worse in the people they are around. Or, in the case of people with autism, they think you can “discipline” the autism out of a person or that the autism and everything that comes with it are made up. I’m sure you know people like this.

This week, the question seems to be what to do if a person like this is a member of your family. As unbelievable as it is to me, I’ve actually seen conversations that wonder if it really hurts their child with autism if someone doesn’t accept them – or if a family member “means well” but is still not a positive influence for the child. I don’t care who that person is – your child deserves to be treated with love and respect. If a family member can’t do it, then avoid that person. Simple as that.

Even if your child can’t say something hurts them, you should know that if it would hurt you to hear it, then it hurts your child. Just because they can’t talk, does not mean they can’t hear and feel! I can tell by the way Casey and Rob are acting if they are getting upset. Or by the look in their eyes. Or if they really don’t want to spend time with someone. And I follow their lead. I refuse to force them to be around people who cannot love and accept them for the amazing people they are.

I know there are a lot of families out there with people who just think if you would discipline your child more or if you would stop “babying” them, the autism would disappear. Often, it seems to be older people, as when they were children, no one had ever heard of autism – people with disabilities were either put in homes or kept out of sight in the family home. They didn’t go to school. They didn’t go to church. They were hidden. So, I can sort of understand why elderly people think they way they do… but that does not mean I’ll let anyone be mean to my kids. Love us as we are or get out of our lives.

There are a few family members that Rob has issues with. Luckily, these are not people he is around often and when he is, it is for a very short amount of time. Casey doesn’t have the same reaction as Rob does. If she is hurt by someone, she tends to avoid that person and ignores them when she does have to be around them. She also has a tougher skin than Rob does and doesn’t take things personally like he does.

He will get anxious and loud and the more the person tries to get close to him, the louder he will get. It can last for hours when he gets home and nothing I can say will convince him that he is an awesome young man and that person who was mean to him is an idiot. So – we avoid. I let him take the lead. If he doesn’t want to see someone, he doesn’t go. There have been times that I know he doesn’t want to go, but he won’t let Casey go by herself, so he reluctantly will follow her. It is truly amazing to see the love and care he has for her.

I know it isn’t easy to avoid family members, sometimes. You can always try to educate those people – let them know that you aren’t babying your child when you bring their favorite foods to family meals. Explain why you do it – because of sensory issues. Try to explain a few times, then drop it. If that person is rude enough to continue commenting about you giving in to your child, then tell them to back off. Some people will never understand and you can’t let your child suffer because of it. Either avoid that person or stand up to them. To protect your child, you don’t have many choices.

And you have to protect your child! Yeah, I know it’s easier to avoid confrontation. But – what’s the cost? Your child’s self-esteem and happiness. Are you really going to let some jerk destroy that? I know you are overwhelmed at times and the path of least resistance is always desirable. But, the damage that can be done to your child is unimaginable. You have to protect them!

I will admit – there have been many times that I was one of the least liked people in the room. I didn’t like that feeling, but I had to be that person to keep Casey and Rob safe. I had to make phone calls that no parent wants to make. I had to go to meetings and struggle not to scream at people. Most autism parents have been in that place. Fun, isn’t it?

But – Casey and Rob, Mandy and Cory always come first. I will stand up for them and defend them against anyone. That’s what a mom does, after all – or what a parent should do. It won’t be easy to avoid toxic family members and I doubt you will like doing it (although, I will admit – there are a few people that I joyfully avoid now! 🙂 ) but you have to think of your child’s well-being first, last and always.

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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, OCD and Anxiety

Autism, OCD and Anxiety

Over the last few days, I have definitely seen an increase in OCD (obsessive compulsive disorder) in both Casey and Rob. It hasn’t reached a point where I need to call their doctor. It isn’t interfering with their lives (that’s how the doctor and I decide it’s time to do something – when the obsessions really interfere with their routines), but it’s more present than it has been for a long time.

Rob’s love of magazines had really loosened. It used to be that he wanted any magazine he saw (though he never tried to buy them at store – only when he was in elementary school. He loved looking at country music magazines and purchased many of those.) and would put up a fight if I told him to put them back. He finally got to the point that he wanted the magazines, but he understood that he couldn’t have every one that he saw.

I got three magazines in the mail last week. Unfortunately, he saw them and decided he wanted them and nothing was going to stop him. I told him as soon as I was finished, he could have them, but that wasn’t enough. He was gone for a few hours that evening and when he got home, he went after them again. I gave him the two I was finished with, but that wasn’t good enough. He wanted them all. He took his shower and literally sat by me on the couch with his hand on the magazine while I tried to read and enjoy it. And he repeated… “one two three magazines. one two three magazines. one two three magazines” until I thought I would scream.

I finally gave it to him and sent him to bed. The next morning, while he was still sound asleep, I quietly took that magazine back so I could read part of it again. When he stumbled out of his room later, he went right to the stand by the couch and grabbed it back. He did put it back, but he was anxious until I was finished and he could have it back.

He has also become very concerned about all of the window locks being turned the same way and other items in their proper places (according to him! :)) I’ve seen it all before. As his anxiety levels go up, his OCD gets more controlling. As well as he has done with this stay at home stuff, I think he is about done. He hasn’t mentioned Hopewell and he is doing amazing in everything else, but the increase in OCD is a sign.

Casey has decided that she can only wear a certain pair of black shorts most days. One day last week, I had just put them in the dryer when she wanted to get dressed. She refused to put anything else on until I told her we would not go for a walk until she got dressed (she had a shirt and socks laying out – apparently, she wasn’t going to put anything on until she got her shorts). As soon as the shorts came out of the dryer, she changed. I thought maybe she needed new shorts, so she went shopping Friday and bought three new pairs. But, this morning, she wanted those same black shorts. She has decided the new shorts are “good” and can’t be worn at home.

She has always patted certain things – her socks, her shoes, the floor in front of the closet, door frames. This morning, I noticed she couldn’t come to breakfast until she tapped the coffee table, the drawers in both end tables, the drawer in the hutch, then the mirror on the hutch and then the floor in the living room. She seems happy – but that much touching is a sign that her anxiety and need for routine is growing.

I am so proud of both of them for how well they have handled the stay at home order. I never in a million years dreamed Rob would be okay with his routine being so drastically changed. He hasn’t even mentioned Hopewell since the end of March! It’s a huge help that they get to see Bob and Reagan a few times a week, but still, I think they are ready to get back to their routine.

I worry about that, though. If and when their day hab opens, it will be different. They will have to stay in a small group with two staff. They won’t be able to wander around the building and they will be asked to wear masks. ( I don’t think that will be a problem, but who knows?) They will not be riding their shuttle and their day will be shorter. And, as much as I think they want to go back, I can’t help but wonder if they really do. Casey says yes, but I can’t ask Rob without him thinking they are going right now – and then asking every few minutes for Hopewell. I can’t do that to him – or me. I think they have had fun staying with me, but fun with mom only goes so far. 🙂

I’m not ready to call their doctor, yet. Right now, the anxiety and OCD are coming out as little quirks more than anything else. We are rarely in a hurry to go any where so Casey can pat all she wants. And if he likes the windows locked, I’ll say it’s for our safety. (Some of his habits are handy – he wipes up spilled water and folds laundry neatly! 🙂 ) What I really wish is that they were able to tell me what they are feeling – what they would like to do – what I can do to help. Some days, the communication issues with autism are the worse part. I hate not being able to help them.

At this point, he has been on repeat with long black train. He isn’t upset – he’s just talking. The weather changed drastically yesterday and I’m sure that is partly to blame, but really, he is just stimming. I’d like to think that going for a walk would help, but I doubt it will. We are going to my mom and dad’s for supper later and I’m sure that will break his repetitions, at least until we get home again. 🙂

I hope all of you are doing okay and staying healthy. I also hope that the people you love with autism are handling the changes as well as Casey and Rob are. This “new normal” is hard enough for typical people to understand. I wish people understood that it’s a hundred times harder explaining it to someone with communication issues. We will get through it with lots of walks and now that the weather has finally gotten warmer, we can go on longer hikes and explore new places. Casey and Rob both enjoy that so hopefully, that will help their anxiety and OCD.

Stay safe!

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Autism and Elmo Tells the Truth

Autism and Elmo Tells the Truth

Did anyone else get to watch the Sesame Street special that was on TV last week? Elmo’s dad (I didn’t even know he had a dad! 🙂 ) helped him video call his friends because he was missing them so much. The TV screen even looked like a computer and the screen was split between Elmo and whoever he was talking to. Honestly, I only half-listened to it (I was using the quiet time for a marathon call with Tracie!) but it was a good show.

When we found out about the special, we wrote it on her calendar for Tuesday. I have discovered as long as she has something on her calendar every day, she stays fairly happy with being home instead of going to their day hab. Some days, I’ll be honest, what we are having for supper is all I can think of to write and she’s okay with that. She asked all day when Elmo would be on and if she had to wear PJ’s to watch. I told her it would be after supper.

Often, when we finish supper, she goes out to sit in the porch swing, but not that night. She went right to the couch and began her wait – of two hours! I told her I wouldn’t let her miss it – even offered to turn a timer on, but she stayed right where she was. At 7, she was ready, but she didn’t seem to be watching it as closely as I thought she would. She giggled several times, but was serious through much of it. When it was over, she jumped up for her bath and didn’t mention it again.

It wasn’t until the next morning that I found out just how much she had been paying attention. She asked about going to grandma and grandpa’s house and I told her we couldn’t. She laughed and said “Elmo says stay home!” Yes! Thank you, Elmo! She still may not understand why we can’t go many places, but since Elmo said it, she was willing to follow his lead. 🙂

As much as she wanted to be like Elmo, Wednesday and Thursday were a little off for both of them. He was louder than he has been in a long time and was stuck on his anxiety song. She had her “look” going on – the one that anyone who knows her well knows means she is getting upset and the situation needs diffused before she blows. Luckily, I was able to find enough things to distract her and by that afternoon, they were both back to normal – whatever that means at this point.

Casey has said she is going to Hopewell on May 1st. I have told her many times I didn’t think she would be going that day and have decided that we need to write cancel on her calendar for part of May, too. If that changes, it will be a happy surprise. I just think she needs enough warning that she won’t be going that day – or hell may come to our house that morning. I am so proud and amazed at how well Casey and Rob are handling this drastic change in our lives, but I’m realistic, too. They will reach the end of their patience.

It has been really hard for them to not spend time with grandpa and grandma and Tracie. They do get to see Mandy and Cory, but not often, and we don’t go to their house. I truly thought they both might be okay missing Hopewell for a few days. When Casey labeled this spring break, it seemed easier for them to accept. She is still calling it spring break – a “weally wong spring break” (that’s really long spring break! 🙂 ) Rob really hasn’t said much. He still spends time (a few hours a week) with his buddy from work, Bob (staff), and Bob has told him many times that Hopewell is closed and has taken him by the building to show him.

Casey is thrilled to spend time with Reagan, another staff from the day hab. Honestly, if it weren’t for Bob and Reagan, I don’t even want to think about what our lives would be like right now. Having those visits to look forward to bring such huge smiles. We also walk a few miles every day. As we walk by the roped off playgrounds, Casey says “dat’s silly” amd that she isn’t sick.

It’s hard enough to explain to a typical person the need to wear masks and how the virus can be shared before you even feel sick, but to Casey and Rob, it’s nearly impossible. She will look at me and say “not sick! good!” and I have to tell her again that I know she doesn’t feel sick, but we have to keep grandpa and grandma safe and stay home. (on a side note – my parents are remodeling their upstairs. Casey has decided the corona virus is upstairs at their house. No clue how she ever came to that conclusion! 🙂 )

I will be honest. As much as this stay at home stuff has disrupted millions of lives, it has been nice, too. (and no, I am not discounting the financial and health scary stuff!) Most days, by the time they get home from day hab, they need to decompress in their rooms until supper. I get home, start supper, clean it up and I’m ready to crash. This time together has allowed us to spend some awesome time having fun with each other.

Casey and I do crafts. Rob will paint, too, and I got to play with Legos with him the other day. (As long as I didn’t touch his favorite ones, anyway!) I love walking with them and talking – trying to engage them in things we see around us. Sometimes, it works, other times, I might as well be on the moon for all the attention they pay me. But, I keep trying – we aren’t too tired to keep trying! Some days, it’s Casey and I dancing around the living room while Rob watches us with a little grin and a “They are nuts” look in his eye.

If you missed the Elmo special, it is online and Sesame Street also has a ton of other free stuff. I’m sure not everyone is so enthralled with Sesame Street, so hearing Elmo talk about staying home and being safe may not work for everyone. But, it may be worth a try. Please, stay safe, stay home, stay healthy. Give yourself permission to cry or yell or sleep or eat junk food – whatever you need to take care of yourself. Your child is depending on you now more than ever. 🙂

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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 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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Autism and Keeping Hope Alive

Autism and Keeping Hope Alive

If you follow our Facebook page, you have probably seen that we’ve been trying lots of new things this summer and most have worked out better than I could have hoped. I wish I knew why – I would gladly share it with everyone, but I don’t. My guess is probably simple maturity for Casey and Rob and the fact that life isn’t one long stressful, what’s-going-to-happen next kind of time anymore, so I’m not exhausted. We have more good days than bad – and even the bad are more “rough” than bad.

Yesterday, we went to a car show. Casey reminded me all week about it. Cory has a trans am that he shows and the kids love to go see it at shows. We weren’t there very long (honestly, while they both look at the other cars, once they see Cory’s, get a picture taken with it and buy a drink, they are ready to go). But – we went! A few years ago, I probably wouldn’t have attempted that without another adult. I simply couldn’t trust that neither would dart away – or that one would want to look at something and the other wouldn’t stand still for it.

We head to the park often to walk. We go to stores (though, honestly, if I have a long list of stuff I need, I don’t take them – finding everything and keeping them with me just takes too long! 🙂 ). Also, we tend to take up an entire aisle, as Rob holds my right hand and Casey my left elbow when we are in crowds. I keep telling them I promise not to leave them, but they feel safer holding on. They will even hold hands with each other when they are anxious – I do love seeing that! Again, a few years ago, I took them in stores only if there was a desperate need. Casey wouldn’t wait for me and Rob’s sensory issues were terrible.

I remember taking Rob to the store when he was younger. He hated the lights – the noises – almost everything about going to the store and he often hid in the cart the entire time. I think he was 8 – 9 and still climbed into the cart (in the big part, not the child seat) and pulled his coat over his head. We were in Wal-Mart one day and it was not a good one. I was tired and on the verge of tears – just wanted to get what we needed and go home.

As we passed a woman with two boys, I noticed the boys pointing at Rob and laughing. My anger flared, but Rob didn’t seem to notice so we went by. Unfortunately, we passed them in the next aisle – and one of them was dumb enough to make a loud comment about him being too big to be in the cart – was he a baby? Rob looked at the boy, back to me, and buried his head in his coat. And Mama Bear appeared.

I loudly (so the boy’s mom could hear) said ‘my son has autism and the lights in the store hurt his eyes – but people like you hurt him more! I hope you never have someone make you feel like you just did to him”. By then, his mom was coming towards us and asked what was wrong. I told her what happened and she was so angry with those boys. She gave them both hell right there and made them apologize. She was almost in tears as she promised to have another talk with them when they got home. She looked right at Rob and said she was sorry. I bet those boys don’t forget that! 🙂

Anyway – while Casey was more likely to run away from me, Rob just couldn’t handle the sensory overload. It was just easier to leave them at home. There are still days that I wouldn’t attempt to take them both to the store – if he’s already anxious or she is on edge, we stay home!

When Casey was small, we couldn’t use the AC in the car – the noise made her scream every time. There were several restaurants that we couldn’t go in because the heating/cooling noises were just too much. I couldn’t take them to a pool because she would get into other people’s coolers and he wouldn’t stay in the shallow end. Plus keeping an eye on Mandy, too. (That’s a big reason we had a backyard pool for years – I miss it so much now!)

In the last few weeks, we’ve gone to two different public pools (including the one where Rob got stung two years ago and he hasn’t been able to let go of his anxiety to go back) and enjoyed every minute. We went on a short vacation and there were no meltdowns, no anxiety. Just an amazing time. We went to a family reunion. We went to a birthday party. We went to a cookout. We’ve hiked, we’ve gone shopping – so many things that other families take for granted – we did.

I will admit – I plan like crazy for some of our outings. I try to think of everything they might need to be successful, but that’s still better than planning what we need just to do it! And I keep an eye on them constantly when we do go places. I watch for signs of anxiety in Rob and for Casey to get into things she shouldn’t. But – I can let go of their hands and I can visit with people! It took years of hard work on their part and lots of other people, but we finally can do some things. I have had so many summers that I was depressed when it was over because I didn’t think they got to do enough fun things, but this year, I think they have. And that makes me feel so good!

I want them to experience everything that they want to try. Right now, Casey is repeating Zoombezi Bay over and over and over. It’s a water park beside the zoo – I have no clue why she thinks we are going there tomorrow, as I’ve never mentioned it and honestly, don’t see us ever doing. (But I won’t say never! 🙂 ) Rob doesn’t want to go there – he wants to go to Hopewell tomorrow and is happy that he is getting what he wants.

When I think of how scary and nearly impossible it was to go so many places when they were little, it’s a miracle to me that we are able now. This is why I want you to never, ever give up hope. Your miracles will be different than ours, I’m sure, but they will happen. We’ve had so maybe little miracles in our lives!

Rob stopped “eating” his shirts! Casey stopped having meltdowns! Rob will try new foods! Casey wants to go new places! They are both sleeping (shhhhh! I don’t want to jinx that! 🙂 ) They both graduated from high school with a diploma. Rob is more wiling to go new places, with lots of supports. Casey never hurt herself when she broke windows with her head. Rob survived all of his accidents. Despite everything, Mandy grew up to love and cherish Casey and Rob (and married a guy who does the same!).

You will have little miracles, too. When you are so tired crying takes too much energy, remember that. Your happy times will be different – maybe your child finally leaves her clothes on! Or your son learns to use the potty. Maybe your child learns to say “hi” using a speech app or learns sign language. Don’t ever judge your journey by comparing to anyone else’s. Our journeys will never look like, nor will they occur on the same timeline.

Also remember that it truly is the little steps that matter. Other families may not understand my joy when Rob wears a new shirt, but that’s okay. Our life is special to us and we don’t need their joy when we have our own. I also know it’s damn hard to see any miracles at times. When your life is 24 hours of stress, it’s nearly impossible to see small steps. You want the big, huge ones! I get that – but you can’t get the big ones without the little ones and some days, a little miracle can go a long way towards bringing a smile to your face instead of tears.

I know I’ve said this many times, but please, please – never give up hope. When you are so tired you can’t see any hope, find help. There is help available (and I know how hard it is to find!) keep looking and making calls and get that help. Beg someone you trust to let you take a nap or to get groceries for you. I hate asking for help, but I do – and you need to do the same. Look for your small miracle every day as you tuck your child into bed at night (and look again every time you have to send them back to bed or remind him to stop singing Long Black Train cause Casey is trying to sleep! 🙂 )

If you are reading this and you don’t have a child with autism, maybe you could be someone else’s miracle. Offer to sit with the child while the parent takes a shower or a nap. Take lunch to someone or even send a card and tell them they are doing an awesome job! You have no idea how much random texts from friends help me some days! You can be that miracle! 🙂