Month: May 2020

Posted on

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!

Posted on

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!

Posted on

Siblings with Autism are Still Typical Siblings

Autism Siblings are Still Typical Siblings

When thinking about people with autism, I wish more people would understand that they are people first – the autism is just a characteristic of them, like their hair or eye color. Casey and Rob may not interact with each other as much as other siblings, but they do try to annoy each other at times. And Mandy joins in the fun!

Yesterday is a prime example. Casey and Rob were waiting in the car with Mandy when a friend gave them a bag of popcorn. Tory handed the bag to Casey because that was the side of the car she was near. Rob immediately tried to get it, as he loves popcorn and Casey won’t eat it. She snatched it away from him and held it until we got home so he couldn’t get any. Then she threw it on the table and never mentioned it again while Rob had a snack.

Later that evening, Casey was outside on the swing when Rob wandered out. This is really unlike him, as if he goes out, he usually sits on the front porch. Anyway, as soon as he sat down near her, she jumped up and ran in the house. He didn’t seem to care and enjoyed the swing for a few minutes. Soon, he went back inside and she came back out. It wasn’t long before he came back out and she left again.

He sat out there quite a while with me and then asked about Casey. We discovered she was in his usual spot on the front porch. 🙂 As soon as she saw us, she ran around to the back of the house to her usual spot in the swing. I was laughing at them both. It was so obvious that she had had enough of her little brother for the day!

Other days, she will lay her iPad down and leave the room. He will grab it and push the home button, so whatever she was looking at is gone. And she likes to barely push his bedroom door open knowing that he will jump up to make sure it is closed tightly. She likes to put her PJs in a certain place in the bathroom and he will move them to another spot. She will put a coat on, knowing he will do whatever she does, and then will take it off after he goes outside so he has to run back in the house to put his coat away, too.

Today has been much the same about going outside. He goes out, she comes in. I have no idea how many times this has happened today. I’m beginning to think he is doing it on purpose just to bug her.

Mandy will join in the teasing, too, and Rob will follow along with whatever she says. Casey doesn’t always join in, but she laughs when Mandy teases Rob. (He is always smiling, too!)

On the flip side, all of them, including Cory, are very close. Mandy and Cory are very protective of Casey and Rob and will do anything to make sure they are happy and safe. As much as Rob and Casey tease each other, they are also very protective. When we are out in crowds, they reach for each other and hold hands. It comforts both of them and is the most amazing thing to see. She knows he will get her where they need to go. And he knows she needs that comfort in crowds. Just like typical siblings, they look out for each other.

He follows her lead in many things. And she keeps an eye on him, when she thinks about it. 🙂 He will always ask where she is, but Casey may forget about him at times. When they are picked up from Hopewell, Rob usually asks where she is if he gets to the front first. She will just stand and assume he will come. 🙂

Honestly, it’s wonderful to me when they “pick” at each other. It’s something that siblings do – autism or typical. I love to see them interacting with each other. Though, maybe not in the way they just did. They were eating supper and Rob took the pepper shaker. He doesn’t use it and was grinning a huge grin as he held it above his head and watched her try to get it from him. (He’s so much taller, she had little chance of reaching it!) He finally got tired of the game and gave it to her, but she was not pleased with him at all. 🙂 But – that’s something that Jeff, my brother, and I would have done to each other. (And still do! 🙂 )

So please, when thinking about siblings, leave the autism out. Watch how they interact together. Even without words, they will form a relationship. It may not look like the relationship between you and your siblings, but it will be there. The love and the laughs – on their terms. Enjoy every minute of it!

And remember, if you mess with a person with autism, their siblings will come to their defense and it will not be pretty. Beware.

Posted on

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!

Posted on

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. 🙂