Category: autism parenting

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The Search for the Perfect Autism Parent

The Search for the Perfect Autism Parent

Yes – you read that right. I’m looking for the perfect autism parent. I want to find one who has never made a mistake – never second guessed themselves – never wished for a minute of quiet – never yelled – never cried. Come on – everyone stand up. I want to see just where these perfect parents are. You know – the ones who judge all other parents. The perfect ones.

This has been a tough few weeks for people with autism – adults and children. An adult was held by police officers because he “refused” to tell them his name. He had wandered away from his group, gotten upset and someone called the police, thinking he was on drugs, as he was rocking and twitching. A child was lost and later found, thankfully, with the family dogs watching over him. Another child was killed by his mother. Another child was “rehomed” (yeah, that’s the word they used.) Another child is still lost. And those are just the few I’ve heard of.

But – the common thing in every post is the “perfect” ones saying they do not understand how the child got away – don’t the parents watch him? Why didn’t the parents make sure the adult had an ID on him? Didn’t they consider this could happen? How could a mother drown her child? How could parents give away a child they adopted because he was too difficult? The endless questions – the accusations.

I’ll admit – I was floored by the parents who broadcast to everyone they “rehomed” the child they had adopted when it became difficult. And I was sick to hear about the mom that drowned her son. I can’t imagine. I just can’t imagine being so desperate that ending a child’s life seems like the best course of action. (My guess is they will discover mom has mental issues, but who knows?)

As the for family that gave away their son… I pray that little boy has found a family that loves him and will do anything for him. Personally, I suspect the adoption and the “rehoming” were part of a publicity trick for them, but I don’t know that. It’s only my opinion.

But Facebook pages blew up when it was announced. People were accusing them of many things and many were saying, “I would never…..” The thing is – you can say that, but you aren’t in their shoes. You have no idea what you would do under the same circumstances. You can believe what you want – but you don’t live in their shoes. You may think they are disgusting humans for what they did and that’s okay. But, instead of blasting them on Facebook – why not just pray for the little boy?

Instead of tearing up a parent who lost their child, why not consider that it may happen to you! I’ve “lost” Rob several times. Thankfully, he was always around the house or the yard, but I would blink and he was gone. He was sitting on the edge of the roof once (scaffolding was up for the guys putting the new roof on). He was laying down on scaffolding once and never made a sound as we ran around yelling his name.

He pushed the mattress on Mandy’s bed away from the wall a few inches, squeezed himself into the space, covered up and went to sleep. He grabbed his bat and ball and crossed the street to play ball with other boys on the ball field. Let me be clear – I was close by every single time. I would turn to help Casey and he would vanish. I thank God every day that he never vanished when we were away from home. (Honestly, though, I usually had a death grip on both he and Casey).

We need to stop criticizing other parents. If someone asks you for help or for ideas, by all means, share them. But you can do it in a nice way. You don’t have to be critical of what they have been doing. Be nice. It’s that simple.

I’m sure other people have comments about me telling the kids they need to head to bed at 9:30 each night. After all, they are adults and should be able to make that decision on their own. I know that – and I feel guilty that I don’t let them stay up. But, I’ll be honest. I need that time for me. I hate to admit it, but I do. I need Rob to have time to settle down before he needs to be asleep. Casey needs to stay on her routine. And they both need to learn other people do need to sleep. They need to understand that after dark is quiet time. Sleep has been an issue for both of them at different times. I refuse to go back to those times. I was a walking, talking, crazy, sleep deprived, half human mom. For the good of all of us, they need to sleep.

But, yeah, I do feel the guilt. I don’t need someone who doesn’t live here or doesn’t have any idea what we’ve been through to tell me I should let them stay up until they want to go to bed. I will be nice the first time I’m told. I won’t be nice the second time. You have had your warning. I promise you – I am harder on myself than you could ever be.

Every one of us can say “I would never….” to any circumstance. And maybe you wouldn’t. But why hurt a devastated parent by tearing them down? It serves no purpose, unless maybe to make you feel as if you are a better parent. I try hard not to judge others for their parenting mistakes. Like I said, I’ve made more than a few, with all three kids. Some of those mistakes are funny, now – some aren’t. The times I screamed back at Casey for hours of headbanging and screaming are moments that break my heart. I kept control as long as I could, but there were a few times that the endless screaming just got to me. Maybe I thought, foolishly, that if I yelled back at her I could get her attention. (for the record – that never works.)

So, please, the next time you hear about a child who wandered away, pray for their safe return. If you want to mumble your thoughts to yourself, fine, but you don’t have to take to social media to spread more hurt and anger. With everything that is happening in our world right now – the riots, the racism, the negative attitude towards police officers – do we really need more hurt and pain?

We strive to teach our children to be kind – to be nice. We teach that everyone can be friends. People with autism have the biggest, most loving hearts – maybe we should all take a lesson from them and learn to love everyone. No judgement, no hatred, no negativity. Just kindness. That’s what we want for our kids, right? A kinder, happier world? Where they are loved and accepted for exactly who they are?

Change starts with us. We can make the world what we want it to be. Be kind. Be safe.

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Autism, OCD and Anxiety

Autism, OCD and Anxiety

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

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

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

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

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

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

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

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

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

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

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

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

Stay safe!

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Autism and a Well-Deserved Pat on the Back

Nine years ago, Rob graduated from high school. It’s been 11 years for Mandy and 13 (how is that possible??) for Casey. Whether your child is graduating from high school, college, or preschool this year, stop and give yourself a pat on the back. School isn’t always easy for families with autism. I know there were many times when I just wanted school to be done. I didn’t really care what happened when school was done – I was just so tired of dealing with it. Even during the easier times, it was always in the back of my mind – when will the stuff hit the fan, again?

In many ways, Casey had a much harder time in school than Rob did. Her sensory meltdowns scared other children and made it harder for them to want to be friends. Not that she cared. She was her own world and, in many ways, still is. She likes herself just the way she is and if you don’t like her, that’s your problem, not hers. (I’ve learned to be a lot more like her in this respect! 🙂 )

And – Casey was the first student with moderate autism (and major behaviors!) that many in the school district had ever met. They simply had no idea what to do with her. I wasn’t much help, at that time. Autism was still relatively new for me, too. So, every year, the battles between me and the school started again. Once she had a better teacher, it was often the teacher, aide and I against the school. Honestly, I never realized what a bad position that put Stacey and Karen in – I can’t believe I never thought of that. But – it was so good to have others see how amazing Casey was. She just needed the right supports.

Rob was mellow. He followed along with his classmates and he loved his aide and his teacher. He had a big group of boys that played with him and helped him navigate the social parts of school. He still talks about those boys and I hope so much that they know how much they mean to us! Rob had his own difficulties, but since Casey had already opened many eyes, his needs were quickly met. (again – an amazing teacher and aides!) Autism was becoming more known by then, too.

Despite her sensory meltdowns, Casey participated in more school activities than Rob did. She loved being part of the musical programs that they school held. Because we knew the crowd noise would be too much for her, she practiced with her class and I was invited to attend the final rehearsal so I could watch her. She didn’t attend the actual evening performance. And that was okay – she didn’t care because she got to sing at school.

They both participated in their 6th grade graduation and awards day. She was excited and followed directions carefully. He was not happy – too many people were watching him. His aide walked with him to get his certificates and he ran back to his class. And that was okay, too. Had he decided not to walk up at all, that would have been okay. Don’t sweat the small stuff, you know.

Casey was even a part of her high school graduation. She wore a dress (oh my Gosh!) and her cap and gown. I sat in the audience feeling like I was going to get sick at any moment. I just knew she was going to throw her hat or flip her dress over her head – something. It was so hot in that gym and I’m telling you – the speeches were the longest of my life. I just wanted it to be done before she got upset. I knew it was silly to worry as her teachers were close by if she needed them. But still…. In the end, she was fine. She proudly stood in line and walked across the stage. However, the look on her face when she was handed her diploma was priceless. You could see her thinking “this is what the fuss is about? a piece of paper??” 🙂

We didn’t attempt graduation with Rob. His fear of crowds and inability to handle heat were going to be too much for him. And the fact that he didn’t want to do it. Simple as that. And that was okay. I didn’t really want to sit through that long ceremony, either. (On another note, Mandy didn’t attend her high school graduation, either. She attended our local career center and chose to go to their awards ceremony, instead.)

No matter where your child is today, please take a moment and acknowledge yourself and your hard work. Getting kids through school is never easy, but when it seems you are constantly fighting for therapies and adaptive services, it can seem like school will never, ever end. And when it does, a whole new scary world opens up. But, those are thoughts for another time.

Stop – right now – and think about something you had to fight for for your child. And remember that you got through it. As the saying goes, I’m scoring 100% for getting through tough times because I’m still here. There will always be something else your child needs, but the fights will not always be as difficult. Congratulate yourself for “graduating” with your child and enjoy every minute of celebration – whether you have a high school graduate or a child moving up a grade – celebrate! You did it! Your child can’t do it alone. You had a part in it – big or small, you helped them get to where they are! You deserve a high 5!

Congratulations for making it through another year of school… or for getting through this crazy stay at home stuff. You got this! Remember how lucky your child is to have you!

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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 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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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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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! 🙂 🙂