Category: autism adult

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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. 🙂

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Autism and Much Needed Life Skills

Autism and Much Needed Life Skills

I just read a blog about how parents (both typical and special needs) do not need to teach their children life skills. Honestly, I was shocked as I am one who believes every high school senior should take a Life Skills class that includes meal planning, budgeting, how to buy insurance, get utilities and balance a checkbook, for starters. Mandy has often told me she wished she had had a class like that, even with me teaching her skills at home. When it comes to autism, life skills seem to matter even less and it drives me crazy.

Will my kids ever live on their own? Probably not. BUT – wherever they live, they can help with household chores. Will they like it? Maybe not, but I don’t particularly like to laundry or cook, either. I do it anyway. And they help. They may not like it, but they do it. (When I ask her to do something, Casey often says “no” as she is getting up to do it! 🙂 )

We were so lucky. The teachers (Thanks, Stacey, Karen, Barb, Polly, Beth, Wendy, Jerri and so many others! 🙂 ) they had believed in life skills, too. I understood the need for some of their school lessons – math, reading, spelling. Rob enjoyed learning about states and Beth encouraged that. But even more than that, I wanted them to learn skills – real life, useful skills. When they were little, I had no idea whether they would ever have jobs, but it didn’t mean they couldn’t help at home.

It wasn’t easy and I had to modify what they did with their sensory issues. Rob couldn’t vacuum. It was simply too painful for him. Even though Casey had auditory issues, she liked to push the sweeper. (Usually with one finger pressed into her most sensitive ear). He liked to dust and wipe windows and mirrors. She enjoys folding laundry. Neither likes doing dishes (that may be hereditary and not autism as I hate it, too! 🙂 ) We spent a lot of time practicing and we still do with some things. Did I get tired of taking so long to do simple chores? Sure – many times. But it was important that they knew.

There so many things your child can help with around the house. What mine can do may not be possible for yours. I limit some of their help, for safety reasons. Rob has driven the riding mower (without the blades moving!) in slow speed several times and he seems to like it, despite the noise. However, I am walking beside him and reminding him to turn and to stop. No way would I trust him alone on it. Casey hasn’t even attempted as it’s not something that interests her.

They both know how to use the microwave, up to a point. We have an old one with a dial on it. I’ve marked where two minutes is and they both know never to turn the dial beyond that. They don’t use the stove – they have no idea that they can get burned and are both too careless. Instead, they help me with the “prep” work and I put food in the oven or take it off the stove. Rob really likes helping with pizza burgers and using the griddle to make pancakes.

Tonight is a perfect example of their help. I had been trying to write and download pictures and technical issues were causing major delays. Supper was going to be about 10 minutes late (oh my God! Not in this house of routines! 🙂 ). When I went to the kitchen, they were both carefully watching and I said it would be ready faster if they helped. As I cut the potatoes, Casey put cheese and bacon bits on them and Rob poured drinks for everyone. While they finished that, I started the dishes. She got plates from the shelf and he got forks. And their smiles – oh! They are so proud to help! (and probably happy that supper was almost ready! 🙂 )

When they finish, they take their plates to the sink and push in their chairs. It’s not a big deal to them, but sometimes, people are so amazed by it. Truly, it irritates me. Helping around the house shouldn’t be a big deal to any child! That’s what being part of a family means – we all pull together for the greater good.

You will have to decide what your child is capable of. And every child is capable of something, if they have someone patient enough to work with them over and over until they understand. Will they always want to help? Of course not – any more than you want to cook every day or mow the yard, but you do it. They can do it, too. Find something that is safe – maybe fold towels? And relax your standards for how the towels are folded! Rob folds them exactly opposite as I do, but you know what? They still get rolled and put away and he’s proud that he helped me.

Casey doesn’t fold shirts that way that I do. He wipes mirrors in circles before he goes back and forth. She sweeps the inside of the room, but misses the edges. He doesn’t pick up everything when he dusts. He sweeps every spot in his room – she could care less about hers until I remind her. She half-heartedly makes her bed – he sleeps in a pile of blankets. No one can see her room upstairs and he always has his door shut. There are more important things to worry about.

When you are discussing IEP goals with your child’s team, be sure to ask about life skills. Your child may never need to know history or chemistry, but folding a towel is important. This is something you can work on with the school!

Rob and Casey understand they need money to buy things. They have no idea where it comes from, beyond my purse. They understand when I tell them they don’t have enough money to buy something, but not necessarily the difference in the price and what cash they have. Rob understands three quarters will buy him a coke at Hopewell and that’s all he cares about. He knows he needs to take money when he goes with Bob, but he doesn’t care how much. Casey will count her money, but she counts it all as one dollar. To her, ten five dollar bills is the same as ten hundred dollar bills. She knows they have different numbers, but no matter how I try to show her, they are still just “dollar bills” to her.

Please, I know it’s easier for you to do things yourself, but it’s so important for your child to learn! Just imagine their smile as they bite into a cookie they helped make or their pride when you brag they folded the clean towels for you. That’s what is important, not the time it takes to teach them. Every one can learn.

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Autism and the Little Things

Autism and the Little Things

With all the craziness still happening in the world, I thought I would share some bright spots from our week – and show the autism doesn’t always win!

1. Rob asked for a haircut! Yes – you read that right! When he was small, hair cuts were a nightmare for him and me and usually involved me holding him tight against me as my mom used the scissors. By the time it was over, he was screaming, I was crying and we were both exhausted. Now, I know it was all sensory but, at the time, it didn’t really matter.

He has let me use clippers on his hair for years (I never have figured out why the scissors were more terrifying than the buzzing clippers) but today was the first time he asked for one. Then, he stuck his chin out and made me understand he wanted a shave, too! I’m still amazed! 🙂

2. Another Rob thing… Trimming his nails. Again, it used to be like trimming nails on an octopus. He hated every single second of it and fought like a wild cat. He’s been okay with having his nails cut for a while now, but he really doesn’t like it.

Tonight, as I cut them, he inspected each nail and if I didn’t cut it enough to suit him, he folded all the other fingers and stuck the one that needed done again in the clippers. 🙂

3. Casey roasted her own marshmallows! While she loves them, she has always been scared to be close to the fire pit. Tonight, she did it! Very carefully, but with a huge grin on her face. It was so exciting to see! 🙂

4. We went for our walk one day last week. When we got home, I asked Casey to get the mail for me. Our mailbox is beside the street and this is always been something I never dared to have her do.

She was so proud to open the mailbox and bring the mail to me. She even waited in the yard for a car to pass before she looked in the box! 🙂

5. Rob swept his room! He has before, but it’s often a quick brush and not really done well. This time, he moved his shoes, containers of blocks and the fan. He even swept behind his recliner and door. He doesn’t like to use the sweeper, but he’s getting awesome with the broom! 🙂

6. There are signs along the path we walk – little things to build conversation between families. (these are new and change often since the social distancing started…. Walking is about all families can do together away from home.) Anyway, Casey was beside me and Rob was several feet behind us.

I read one to Casey that asked her to name three things that start with R. She said Rob, red and Rose. I tried another letter and she answered again, but said done.

Since it was quiet, I realized I could hear Rob. He was reading all of the signs and even answering some of the questions! He talks so quietly, I hadn’t heard him before. More proof that there is so much in their minds that we may never know about! 🙂

7. This one has been happening for a few weeks, but I’m still so excited about it that I wanted to share it again. Rob doesn’t like change in his routine and I always try to tell them before they leave in the morning (you know – before social distancing and the fact we are all here together! 🙂 ) who would be here when the shuttle brought them home or if Grandma and Grandpa were picking them up that day.

We decided to try personal care services and split Casey and Rob up. She is fine without him, but he relies on her a lot when they are together (though, in crowds, they reach for each other and hold hands 🙂 ). His buddy Bob would be taking him places, while Casey would go with Reagan. I knew Casey would be fine and she was beyond excited to go.

Rob, though – I had serious doubts. Especially since they would have to wait at their day hab until Bob and Reagan were ready and most of their friends would have left. But – Rob was awesome! He waited for Bob and never got anxious at all. Now, he gets so excited when he knows Bob is coming! Another big step of independence for him!

To anyone outside an autism family, these things may seem not worth mentioning at all. To me, they are huge steps that show the continuous progress both Rob and Casey are making. It seems every day one or the other shows me something else that they know or can do that I didn’t know about. I love being pleasantly shocked by this!

There were so many years that I doubted either of them would be able to do anything or go anywhere without me gripping tightly to them and avoiding so many places so I didn’t set off Casey’s sensory issues or his anxiety. We were somewhat isolated from everyone but close family and I expected that would continue.

I share these little things to give each of you hope that your difficult days will end, too. Not that we don’t have….umm… interesting… days at times, but not like we used to. If this lock down would have happened when Casey was little, she would still be screaming (snow days were hell – she screamed bloody murder until her regular time to come home, then she slipped right into her after school routine). Now, she is giggling about walks in the park and coloring eggs on Saturday.

I hope all of you are safe and that your loved one with autism is handling this massive change without being too upset. Please take care and look for your bright spots every day! 🙂

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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 Quiet Time for Mom

Autism and Quiet Time for Mom

In a few hours, I’ll be heading to camp to pick up Casey and Rob. I dropped them off Friday after supper and they stay until after lunch on Sunday. They were both so excited about going, but to be honest, I tried not to look forward to it until I dropped them off. I kept expecting one of them to be sick again or Rob not to be able to walk.

But, they did go. Ernie got chosen (after several minutes of trying to decide who to take) and Rob packed enough clothes to last several days. He had to run back in the house and get his cowboy hat. 🙂 (he only wears it to camp, now!)

I came home and got to watch Avengers Infinity War again… Quietly. No bath interuptions. No snack interuptions. No long black train… And then I went to bed. Exciting? To you, maybe not. To me…. It was great!

Yesterday, I spent the day doing fun things for me – and even got to take a long walk with Blue! And a long talk with Tracie (uninterrupted!) and the last Avengers movie. (what can I say? I love Hulk, Thor and the others! 🙂 ) and yeah, I had tears at the end – but you know what?? I got to watch the whole movie!! The whole movie! Imagine!! It was great! (I do watch movies, but rarely without interruptions or starting them later at night when all I really want is to go to bed!)

And now I’m going to get ready to go to church with mom and dad and have lunch with them before I go pick up the kids.

Later…. church was wonderful. Lunch was fun and I got to camp early to see them. I had their suitcases in the car before they got up to the building where we have to sign them out. Rob was walking up to it when he saw me and I got a huge grin – and even a hug!! Usually, he doesn’t do that until we are home, but it was amazing to get a tight squeeze when he saw me. Then Casey did the same – a real hug and such a sweet smile. 🙂 They missed me, too!

Rob was a little anxious this time, but who knows why? He was on repeat about fast food places and their menus and couldn’t go to sleep last night. I wish he could tell me what he was thinking, but he just smiles and looks at me. Maybe someday, I’ll know. For now, I can only guess. And guesses won’t help me keep it from bothering him again – whatever it was. I’m so thankful that camp staff weren’t upset at all – I hope they know how much that means to me. It isn’t easy knowing that he was singing late at night and bothering other people. It’s a worry for me every time he goes.

They are both happily in their routines now. Ipads are on – Lego trees are being built. Her foot is swinging to music as she asks about Mandy’s birthday tomorrow. And I’m happy they are home. I enjoyed the break – I’ll admit that, but I still feel more like me when they are home. I do look forward to the next time (and Casey has already told me they are going to the zoo!) and I think they are, too. They love camp and the friends they have there. Casey was a little surprised to tell me that one friend had a baby (Lauren is a volunteer that hasn’t been there for a while, but she brought her baby with her this time. 🙂 ) and that Logan’s daddy is Donald. (Again, I have no idea why she didn’t realize Emily and Donald were married – or if she even cared. But somehow, she realized that Donald is Logan’s daddy and she just giggles and giggles about that. 🙂 )

I know that not everyone is as lucky as we are to have a camp so close to us. I wish more people had services like this – and that more people who do live close took advantage of it. It was hard for me the first time. Not just leaving them with people who were mostly strangers, but just to admit that I wanted and needed a break was terribly hard. I’m always told how strong I am. I feel like I let people down if I admit I need a break from autism. (I know it’s silly to feel this way – but it happens.)

So – take all breaks you are offered. Enjoy every quiet minute you can get. These quiet minutes recharge your spirit which makes it easier to handle everything life with autism throws at you. Push the guilt away and enjoy being just you. Enjoy the quiet without guilt. Enjoy eating a meal without “help.” And enjoy the smiles and hugs when you see them again. 🙂

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Autism and Illness – The Sound of Silence

Autism and Illness - The Sound of Silence

Let me say… I’m always ready for a few minutes of quiet – no long black train, no stomping up the stairs, no music blaring, no long repetitive sequences of words. In the last week, I’ve gotten lots of quiet moments and have been worried to death.

Last Sunday, my mom gut told me Rob wasn’t feeling right. I couldn’t pinpoint what was wrong, as he was eating and drinking like usual. No rubbing his ears. But, I knew something was going on. By late afternoon, he had a fever. By mid evening, his fever was over 103 and he still couldn’t tell me what hurt.

So I went into panic mode. I gave him ibuprofen, popsicles and cool rags for his head (which he hated and threw off as soon as I turned my back!). I talked to mom and Mandy and cancelled our plans for Monday. And I tried to decide whether to take him to the emergency room. (he had a seizure when he was little from a high fever – I’ve always been terrified it would happen again.) I paced from his room to the living room where Casey was on repeat “Robbie’s sick. Robbie’s sick. Robbie’s sick.” I took a chance and asked her if she knew what hurt Rob. Then she started coughing, but not too much.

His fever wasn’t coming down, so I put him in the shower. I was surprised he got in as I knew how bad he was feeling. I said again “Tell me what hurts.” No response. “Show me what hurts.” Nothing. Just a completely miserable looking young man.

His fever came down to 101 after the shower. He ate his snack, took his pills and went to bed. Casey kept telling me she was going with Regan to Odd Lots and to get a frosty Monday. And she coughed.

By Monday morning, you guessed it – they were both sick. I called the doctor and said I thought he had an ear infection and she had a sinus infection. We had an appointment quickly.

The nurse practitioner took one look and said she wanted to swab them for influenza. I laughed as there was no way either of them would let anyone put anything up their nose. As proof how bad he felt, Rob never moved when the nurse swabbed his nose. Casey jerked away, but the nurse did manage to get a swab.

In ten minutes, we knew. Influenza A for him. Hers was negative, but the nurse said she was sure she had it, too, but in the earlier stage than him. My busy planned week came to a stand still. They were both contagious. I wondered when I would get it.

They slept all day Monday, through the night and into Tuesday. Rob would eat and drink, but she refused. By Tuesday evening, his fever was 103 again and she was in danger of getting dehydrated. I wondered if the hospital would put them in the same room as I paced from one room to the other. (yeah – I know, but I was tired and stressed and thinking worse case scenario).

I’ll admit it. I really didn’t like autism for a few days. I needed to know what hurt, what I could do to help them feel better and thanks to autism, they couldn’t tell me. I knew I needed to watch him for an ear infection and both of them for pneumonia. She was still coughing. He rubbed at his ears. And I paced and worried and mumbled not nice things about autism under my breath.

Before anyone gets a burr under their saddle, I’m not saying I was upset at kids at all. I just got irritated at autism – it was preventing me from helping my kids and I was feeling so helpless. I hate that feeling. I sat and wished he would long black train. I wished she would stomp up the stairs. I wished the quiet would go away. (That proves how stressed I was – to wish for hours of long black train! 🙂 ).

Thank God, both their fevers finally came down late Tuesday and Casey even took a few sips of juice. They slept off and on all day Wednesday and Thursday. We even had a snow day Friday so I didn’t have to miss any more school.

Casey is talking about going with Regan Monday and riding the shuttle to Hopewell. Rob hasn’t said a word. I just keep hoping they are on the mend. They are both sleeping more than usual and aren’t talking much. Eating is still hit or miss and their coughs sound nasty. It isn’t a constant cough, but it hurts me to hear it.

He finally mentioned Hopewell this morning. I asked if he wanted to go or stay home with Mommy again. He said Hopewell, but then coughed again. The doctor said it would be probably a week before they started feeling like themselves and that secondary infections were a concern, especially since autism prevents both of them from telling me that anything hurts. Today is a week.

I wish I knew how they really felt. They are moving around so I guess tomorrow we’ll try to get back to our normal and let them go. They were both upset last week that they didn’t get to go with Bob and Regan after Hopewell and Rob missed his aquatic therapy. Thankfully, the hospital rescheduled him for tomorrow. I just have a feeling that they will both be exhausted by tomorrow evening. Unless their fevers come back, they will go. And I’ll keep my phone close by in case they need to come home early.

Last week just proves again to be careful what you wish for. I often wish for a few minutes of quiet, but when I got it, I couldn’t enjoy it. I hate it when any of my kids are sick, but at least Mandy can tell me what hurts and if she needs to see the doctor. With autism, it’s just a guessing game and while I’ll admit I’ve gotten pretty good at guessing, I don’t like it. I want to help them feel better, not wonder if I’m doing the right thing.

We’ll see tomorrow afternoon if I guessed right about sending them back to Hopewell. I hope I am. I wish they would just say they are too tired to go. Or that they ache. Or that their head or chest hurts. Maybe some day they will – Rob will tell me at times when his ear hurts and he needs to see the doctor. Small steps. And I’m proud of every little step they have taken.

Stay well! Disinfect. Wash your hands. Avoid people and stay home! 🙂 🙂

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Autism – Why are You Sorry?

Autism - Why are you Sorry?

A few days ago, I was at an event doing a story and three different people asked if I had kids and how old they were. I told them that I had 3 – all adults and that two had autism. And it was like a light was flipped off. The “Oh I’m so Sorry” pitiful look came across their faces and I seriously wanted to smack them all. Why in the world would they be sorry for my amazing kids?

I understand that when people don’t know what to say, “I’m sorry” is an easy go-to phrase, but really, it’s annoying. I’m not sorry for my kids and they wouldn’t want anyone’s pity (unless it was possible that along with the pity came some French fries! 🙂 ) They are amazing, just the way they are. I am one proud as heck mama and they know it. We have all worked darn hard to get where we are – and we don’t need anyone’s pity because of that.

The truth is – maybe I feel sorry for the parents who lose childhood magic in their home when their kids grow up. I can’t imagine how boring holidays would be without the magic of Santa coming – the eyes that twinkle and the giggles at the very thought of his visit. How boring Halloween would be without the difficult decision of what costume to wear and what candy to hope for? What about an Easter basket that magically gets filled by a giant bunny while they are asleep?

The parents that feel sorry for me don’t get to experience the pure joy that a waterfall can bring or how a long hike in the woods can be a journey worthy of a novel. They don’t see the excitement that a new box of crayons can still bring and can’t hear the giggles that Elmo can cause. Their children will grow into adults that worry about jobs and houses and bills. My children grew up to see joy in the world.

It’s not that they are always happy. We all have days that the world is a tough place, but we work through it together. I’m still one of the people that they completely believe in. They will never outgrow wanting to spend time with me (though they both love going places without me, too! 🙂 ). I’m one of the few people they completely trust. Why feel sorry for me about that?

Yes, we may have different challenges than other people, but that doesn’t mean our challenges are tougher to live with at all. It means that we adapt – we change – we do what we need to do. Just like every other parent in the world. Every family has its own unique challenges that others can’t understand. That doesn’t mean we need or want your pity.

Instead of pity, why not ask how the kids are doing? Ask if they are happy or what they enjoy doing. Ask about them – just like you would if you were talking to any other parent. Save your pity for when we can’t see it, because I’ll be honest… some days, some exhausting, rough days.. when I see that pity, it just makes me want to cry. And I don’t need that. I would much rather tell you where Casey volunteered this week or that Rob tried another new food.

I would much rather tell you that Rob doesn’t need to rip magazines all the time so his anxiety must be under control. I’d love to tell you how Casey loves to sing and can’t wait to be in the talent show again this spring. Or I could tell you about the Lego designs Rob builds or the things Casey paints. Fun things are so much easier to talk about. I’ll listen to you brag about your children and I’ll brag about mine.

Save your pity for someone who may really need it. Or, instead of feeling sad for us, get to know us and be our friend. We can always use new friends! Ask questions. Smile. say hi to Casey and Rob. They truly aren’t scary (I always laugh when people ask how dangerous they can be when upset. What can I say? I have an odd sense of humor at times! 🙂 ) Just because they have heard of someone with severe behaviors, they often assume every person with autism has those behaviors. Cause, you know, everyone is exactly alike, autism or not. Ugh.

So, if you are reading this blog just because you are interested, remember to save your pity. Be our friend. 🙂 If you are a person who see that pity face, remember people don’t know what to say at times, so don’t smack them. 🙂 Instead, brag about your children, just like I do! 🙂

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How to Find a Safe Place for your Adult with Autism

How to Find a Safe Place for Your Adult with Autism

One thing I hear over and over again is what to do with an adult with autism during the day. As parents, we know our kids do not want to spend every waking moment with us. Even those who are severely affected need some diversion in their lives. And even if they don’t need a break from us, we definitely need a break from being a parent at times. I know that’s hard to admit, but saying you need a break doesn’t mean you don’t love your child more than anything in the world. It simply means you need to breathe.

As I’ve shared before, we are lucky. We have the services the kids need here in our small town. Yes, I wish there was more to do, but that’s the trade off for living in the town we all love. We had speech therapy, OT, equine and even aquatic therapy. They have a place they love to go to every day. It wasn’t always easy, though.

Many years ago, our county board of developmental disabilities had a sheltered workshop. Casey started going once a week during the second semester of her sophomore year. She loved it and continued doing that her junior year. Her senior year, she went to school Monday, Wednesday and Friday and the workshop on Tuesday and Thursday the first semester and switched days the second semester. The week after she graduated, she went to Hopewell every day.

Rob was already familiar with the workshop, so he didn’t start going until his junior year. Again, he went to Hopewell often throughout his Senior year.

Because I worked for the school that the county board has, I knew most of the people who worked at the workshop and, though I was nervous that no one would like the kids, I was comfortable that they would be safe.

Unfortunately, a few years later, their day hab was privatized. Honestly, I was terrified. Many of the people I knew would be leaving and I was worried that anyone that worked there wouldn’t be there because they had a passion for helping others but because it was a job. Or, worse yet, they wanted “control” over people who couldn’t fight back or tell on them.

Thankfully, Rob’s favorite person stayed (If you ask him about friends, he will say “Bob is my friend.” 🙂 ) and Casey seemed okay with new people. But – I was still nervous and we’ve had some bumps. I’ll be the first to admit, some of the bumps were caused by my lack of sleep and the fact that I get angry and over react when that happens. And sometimes, I’m just so sick of dealing with stuff, that I yell over little things. (I always try to go back and apologize to people – I truly don’t mean it often, but sometimes, everything seems to be too much and I lose it. 🙁 )

So – if you are looking for a safe place for your adult, here are a few tips I’ve learned.

  1. Visit without your adult. Just sat back and watch what’s going on. Is the staff interacting with everyone? Are the attendees actively involved in their day? Is it clean? Accessible for everyone? Talk to administration and ask all of your questions. I promise you – they have heard them all before. If they truly want to get to know your adult, they will be happy to answer anything. Ask about staff ratios. Ask about daily routines. Share your concerns about your adult and see how they react. I told staff that Casey could have terrible screaming meltdowns and watched their eyes to see their true thoughts.
  2. Talk to families with adults in the day hab. While administration may not be able to give you that information, you can ask if they would contact families and give them your contact info. Talk to people who go there and see what they think.
  3. Take your adult for a visit. See how staff interacts with him/her. Show them how you communicate with your child and see if they will try. Again, share any concerns you have. Sensory issues, behavior problems, dietary concerns. You need to be completely honest with the staff if you expect them to be honest with you. Ask hard questions and take notes.
  4. Once you decide where to try, take your adult the first time. Be there as a comfort if they need (Casey and Rob had a aide go with them – they never seemed to want me around! 🙂 ) and leave if they want you to go. Keep an eye on your child the next few weeks and see if you notice any new behaviors that could be telling you they are not happy there or are scared or anxious. If you see anything odd, go talk to the day hab.
  5. Drop in for visits. If you are told you are not welcome to stop in, do not even think about letting your child stay there. Stop by unannounced and see what’s happening. See if your child seems to be interacting and happy.
  6. When there is a problem, immediately talk to administration. Don’t wait and see if it gets better. (I do wait if Rob seems anxious, as he does get worked up about things they have no control over). Ask staff to contact you if they notice anything off about your child. Trust is a two way street!
  7. Make friends with the staff. No one wins if you try to be superior or a witch about your child. No matter what you think, your child isn’t perfect and staff needs to feel comfortable calling you over little issues or they won’t communicate when there are big problems. Always, always, always keep communication open! I can’t stress that enough. I’ll even venture to say that the staff at Hopewell wishes I didn’t communicate as much! 🙂 But, I feel better knowing that they have all the info they may need, whether it’s that my parents are picking up the kids that day or that one of them didn’t sleep well the night before.
  8. If they have family events, go to them. Hopewell has a Thanksgiving lunch and it’s so much fun to see old friends and meet new ones. Parenting a special needs child can be lonely. Sometimes, it’s even lonelier when they become adults as you don’t have school activities to meet other parents, anymore. You need support from others who understand your life.

A word of caution. When you are asking for recommendations, you will hear positive and negative about every place you visit. For each glowing report you hear, you will hear a horror story. Take both with a grain of salt and make your own judgments. When you decide on a place for your child, visit often. Make yourself available to staff. Just remember to follow your own gut – you will know what is best.

Unfortunately, there is no way, barring keeping your adult with you every minute, to be 100% positive of their safety. If you feel uncomfortable around a person or a place, listen to your feelings. I wish there was a guaranteed way to always make sure they are with people who love and respect them – I wish that every day. I look at strangers with suspicious eyes. I hate to admit it, but I often look at new staff the same way. Until I know you well, you are a possible danger to my children. Please don’t take offense. I simply love them more than I care about your feelings. I have to be sure they are as safe as I can possibly make sure of.