Tag: autism mom

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Did I Cause Autism in my Children?

Did I Cause Autism in my Children?

Today, hearing a parent wonder if they caused their child’s autism would shock most people. Today, it is known that autism is a neurological disorder. Today, autism is well-known, even if it is still not always understood. But, when Casey was diagnosed, it was a different world. It wasn’t something very many people knew anything about, unless they had watched the movie “Rainman”. And, even then, many people wondered how many liberties had been taken to make a better movie.

I’ve mentioned before that the first book I was told to read when the doctor gave me her diagnosis scared the hell out of me. As I read it, I highlighted parts to come back to – I was ready for research to help my little girl. There was no internet. I had books at the library. A local bookstore was managed by a good friend of mine’s mom and she ordered the book for me. Since I was told it was the best available, I wanted my own copy. I still have that terrifying book on my shelf of the autism books that I have really enjoyed over the years. It is a reminder to never, ever believe what other’s say about your child.

But, I wanted to read more and looked for books at the library. Imagine my surprise and shocked when the next several I read said that autism was caused by “refrigerator” moms. Basically, autism was caused by moms who didn’t connect with their child and the child felt they weren’t loved, so they pulled back into themselves.

Okay. So – I knew it couldn’t be true. In my mind, I did. I knew that I spent every day with Casey. I didn’t have to work, so it was Casey, me and Molly, our black lab together every day. We went everywhere together. I talked to her all day. I read books to her when she was too small to even hold her head up. I played peek a boo and we cuddled often.

But…. what about when I put her in a playpen so I could take a shower? She was in the living room, not in the bathroom with me. Maybe she thought I just left her to do something more fun? Sometimes, I let her sleep in the playpen for her afternoon nap instead of putting her in her bed. What if she only went to sleep because she was bored and lonely? What if she felt abandoned when she stayed with my parents? What if, even as I talked to her, I wasn’t really connecting to her? What if I really did cause her to withdraw from me?

Today, this all sounds completely unreasonable. But, at the time, I was a young, first time mom. No one I knew had a child with autism. Doctors had little experience with it. My friends thought maybe she was sick when I told them. And the books – they said I caused it. I grew up loving books – I read about anything I could get my hands on. What I read in reference books was the truth. And, according to the books, I was the cause. I didn’t love my little girl enough for her to want to talk to me or anyone else.

These were secrets thoughts. I didn’t talk to anyone about it – what if they agreed with the books and autism was my fault? No, it was bad enough to know it myself. I didn’t want anyone else to think the same. It was too terrible to think about.

Finally, I found new books. New research showed that it wasn’t bad mothers, but differences in the brain that caused it. Even after I read that in the first book, I wasn’t sure. If all the books I read were wrong, how could I be sure this one was right? Then I read more and finally, let the guilt go. I didn’t force Casey to withdraw from me. She knew I loved her, even if she couldn’t say it back.

I let go of even more of these crazy thoughts when Mandy never showed signs of autism. If it was me, she would have had autism, too. By the time Rob was diagnosed, I had read so much and talked to so many people that I knew it wasn’t me. It’s funny – way back then, I did hear a mom mentioned that she thought autism might have been her fault and I didn’t know what to say to her. Today, no one even thinks such a crazy thing. And that’s amazing! Finally, people are looking for ways to help, not someone to blame.

I’m sure someone could still stumble onto those old books somewhere. Thankfully, with the availability of the internet and thousands of other books, no parents will wonder if they caused their child’s autism again. It’s a thing of the past. Autism is difficult to understand and I don’t think they will ever find out the true cause. Personally, I think there are many factors – why else would this be such a spectrum disorder? I see many older adults that probably have autism on some level. Had they been children, now, they would receive a diagnosis. But when they were children, only the children with severe autism were diagnosed.

And I know it doesn’t really matter what caused autism in Casey and Rob. They are who they are. They are amazing, strong, kind young adults and isn’t that what we all want our children to grow up to be?

Happy Mother’s Day to all!

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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 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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An Autism Mom’s Thoughts on a Very Different Easter

An Autism Mom's Thoughts on A Very Different Easter

Holidays are special around our house. Birthdays, Christmas, Easter, Thanksgiving, Halloween, even Memorial Day and July 4th have their own traditions. And every one of them includes family and friends. The gatherings might be smaller because of autism, but we have celebrations. This last month has sure changed the way we follow our traditions.

Casey has a checklist in her head of every thing that needs done to make a special day complete. We colored eggs yesterday, the Easter Bunny came and left baskets and hid eggs. (By the way, the Easter Bunny should not hide eggs when she is mostly asleep… I hope we find the rest by Christmas! 🙂 )

Casey and Rob looked at their baskets, she looked for a few eggs (honestly, I don’t think she cares – it’s just what you are supposed to do!) and went back to their rooms. But not before asking about lunch at grandma’s house. Mandy and Cory are coming here for lunch, so Rob didn’t really care about not going anywhere.

What I have heard over and over is “grandma, grandpa coming here?” (way back when all of this social distancing started, we thought about having a cookout on Easter…we could be together, but apart) The weather simply isn’t cooperating for that idea and we need to protect grandma and grandpa. Casey is having a harder time with this. She will say “not sick!” and I try again to explain to her that she may not feel sick, but she still might get someone else sick.

She flips her head, sighs and stomps her foot. It just doesn’t make sense to her. As I write this, she is still smiling because Mandy and Cory are coming and she planned the menu (ham, baked beans, pasta salad, cookies, brownies and pie… Do you notice the sweet tooth? 🙂 )

What I want to say to her is that I want to see Grandma and Grandpa, too. I miss seeing my brother and his family. We are supposed to be laughing and goofing off – together – not texting Happy Easter to each other. I’ll be the first to admit – I really don’t mind staying home. When our lives are “normal” by the time the kids get home from Hopewell, they need to decompress in their rooms. They want to be alone for a while. And I have supper to make and laundry and… on and on…. Some nights, it seems like we barely connect.

But, since we are all home – we are walking every day (or as many as we can between rain drops and snow flakes!) and we are baking – making crafts – painting. We are just sitting on the swing and watching the birds and talking about Sesame Street or the Wizard of Oz. We are having long “talks” about fast food menus and where we have gone on vacation. We talk about who went to heaven and going to the zoo this summer (maybe!).

So, yeah, I’m missing my family and wishing we were all together. We have already talked about having a Casey/Grandpa/Jen/Jeff/Cory/Lacey/Anna birthday party/Lacey graduation/Mother’s Day/Memorial Day/July 4th party in July. I can only imagine the traditions that Casey will want to include on a day like that! 🙂 But, it won’t matter, because finally, we will all be together and acting like our usual goofy selves. I can’t wait!

I hope that when this is all over, I don’t fall back into my old habit of worrying about gatherings and how Rob will do. I hope I can just relax, grab the kids and go! I hope I remember not being able to see everyone and how little it matters if Rob is a little loud, as long as he is having fun. I’ll do my best, but I also know a lot of the worry depends on how tired I am.

I hope everyone has a blessed Easter with special traditions that are unique to your family! Be happy, be safe!

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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 and Staying Home

Autism and Staying Home

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

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

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

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

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

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

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

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

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

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Autism, The Birthday Girl and Slightly Different Traditions

Autism, The Birthday Girl and Slightly Different Traditions

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

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

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

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

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

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

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

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

Be safe, everyone! 🙂

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How to Talk about Scary Subjects with a Person with Autism

How to Talk about Scary Subjects with People with Autism

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

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

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

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

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

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

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

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

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

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

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Autism and Another Perfect Storm

Autism and Another Perfect Storm

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

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

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

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

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

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

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

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

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

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

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