Category: autism parenting

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Perceptions of My Life as an Autism Mom

I was at an event a while ago and two different people made comments about the life I live. I didn’t think much about it while I was there, but driving home, I wondered about their observations. One is a close friend, the other an acquaintance. I started thinking about the perceptions people have about me and my life.

One perception people have about my life is that it’s never quiet. Ok – I’ll give them that one. There are quiet times in my house, but only when the kids are not here or are asleep. If it’s too quiet when they are here, I go see what they are up to. But – doesn’t every parent do that? And how many homes are quiet when the kids are home? Why do people think my house would be any different than theirs?

They may hear kids talking in their home. I do, too. Often a little louder and not as understandable as most people, but talking just the same. They may hear toys. Yep, got that, too, since Elmo and Casey’s toy piano can be heard often. They may hear music or movies. Yep – the same movies over and over again. But Casey’s music changes, depending on her mood.

Another perception is that I never get any sleep. When the kids were younger, this was true and, at times, we still have rough nights around here. (crazy weather and full moons are not my friends!) I finally found the right combination of meds for Rob to help him sleep, so most of the time, we all sleep well. (Knock on wood! 😊)

Here’s a good one.   People think I’ve got the patience of a saint.  🙂  🙂  And I do – with my kids, with people who have special needs.  But – if you are rude or obnoxious…  hmm… nope.  My patience stays with those who need it.  🙂  I will be nice as long as I can, then all bets are off!

Honestly, the perception that bothers me the most is that we need pity. I get why people might think this, but really, it just irritates me to no end.

Why would anyone feel sorry for us? Casey and Rob are happy. They have everything they need and most things they want. (I say that because right now, they want to ride rides at our county fair, which has been canceled. Thank you, covid… Now go away!) They love going for walks, buying coloring books and socks, playing cards and construction paper.

Do they have struggles? Sure – but we don’t need anyone’s pity. We need compassion and understanding. Every family has struggles – some are just really well hidden and ours are loud and more obvious at times. 😊

Yes, my life is different than most people. It’s different than my autism mom friends. But that’s ok. Being different keeps life interesting and fun. Yes, I do feel lonely at times and, yes, I definitely get tired of helping with baths. Yep – get tired of worrying about the future. Yep – get tired of always needing someone to be with Casey and Rob.

But – I also get to spend evenings on the patio with them, listening to giggles. I still get to believe in Santa and the Easter Bunny. I get to celebrate every… single… holiday. I get to have supper with them every night and tuck them in bed. (Usually more than once! 😊)

Instead of just assuming what my life is like, ask questions. I don’t mind and would much rather someone ask than not. The only way to make the world more accepting of Autism is to get information out and spread it around! That’s why we go places. Some times, our days out don’t go as well as I would like, but that’s okay. I can have a good cry (either on sadness or anger) and move on.

Our lives are different than yours. And I wouldn’t have it any other way. 😊

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Autism and Constant Supervision

Autism and Constant Supervision

Since I went back to school a few weeks ago, I’ve needed help with Casey and Rob for about an hour in the morning before they can go to Hopewell. My parents, Mandy and Bob (Rob’s favorite staff person) are all helping. This week, a conflict has come up and I have no one to help one day. I stressed about it and asked who I could think of if they could help, but finally came to the conclusion that I would just have to go into school late. I am lucky and grateful that I can do that, but it just reminds me again that I still need a “babysitter” for my adult children.

Never being able to leave them alone is not something you think about when they are little – no one leaves little children alone. And you are too busy to think about the future. Then, suddenly, they are teenagers or adults…. and you still need someone to be with them all the time. Forever.

Before anyone misunderstands, I do know how lucky I am. Casey and Rob don’t play with knives or matches or the stove. They don’t eat or drink things they shouldn’t. They don’t bother medicines. They don’t leave the yard or wander away at night. I am able to take a shower without worrying. Or go outside for a few minutes. Many, many autism families can’t do any of this. They have to keep an eye on their child all of the time – no breaks for the bathroom or a shower. I feel for them. It’s a tough life – you love this person so much, but at the same times, you desperately need two minutes to yourself.

But – sometimes…. I want to be able to go with my friends without worrying about who will stay with them. I want to sit by a campfire without needing to go check on them every few minutes. I want to be able to get groceries or run errands without their “help.” 🙂 They have come so far since they were little and it was nearly impossible to take them to the store by myself. (Casey had meltdowns and Rob had sensory overload – and they both liked to dart off.) We go places all the time now and I love it, but …. I just never thought I would need a babysitter for my adult children.

I never dreamed that I would be stressing over an hour on a weekday morning when they were adults. Sometimes, the reality of our situation slaps me in the face. As amazing as they are and the amazing things they learn to do every day still doesn’t make it safe for them to be alone. I doubt either would leave the house in the event of a fire (we have talked about it – many times – that they are to go to the garage when the smoke detectors go off, but they don’t even acknowledge that it is beeping). They count on someone else to keep them safe. Neither will use the phone to call for help.

I always laugh when someone tells me to just “find someone” to stay with them. Really? Like I’m going to leave my communication- challenged children with strangers? I don’t trust easily and have been burnt by some people I did trust. So, until I know someone really well, they don’t spend time alone with my kids. Period. I even have a hard time when new staff starts at Hopewell. I can’t see them interact with Casey and Rob and I can’t see what they think of the new person. So – I just don’t trust. I hate being like this, but I don’t plan on stopping.

I’ll admit – there are times I’d like to go some place and I just choose not to go instead of asking someone to stay with the kids. I know they need to learn to be with other people and I know I need time away, but I hate asking for help for “fun” things when I need help for important things, like work. I just get tired of needing help. It’s just not something I ever thought I would have to do when my kids were adults. Even when they were both diagnosed with autism, adulthood wasn’t something I had time to think about much. The here and now was always more important than the future.

But, see – the scariest part of them always needing supervision is the future. The future when I can’t take care of them anymore. The future where I have to trust someone else to watch them constantly. Mandy and Cory always tell me not to worry – that Casey and Rob will always have them and I love them for that, but they need their own lives, too. I don’t let myself dwell on the future much as, sometimes, those thoughts are guaranteed to bring on a crying fit.

So we’ll go on, as we have been. Doing things together and taking an extra person when I may need more than one set of eyes. (Don’t let their size fool you – Casey and Rob are fast!!) Even going to the bathroom when we are out is hard – I can’t assume they will stand and wait for me. Some days, they would. The next time – that’s a big no! See? Unless you have a child with autism, you wouldn’t think about not being able to go to the bathroom if you are not at home. It’s something we all live with.

I hope each of you has someone you can trust to be with your kids when you need a break. Take breaks and take care of yourself or you will burn out. Then who will take care of your child with autism? Just like when you are on a plane – put your oxygen mask on first, so you can help others. 🙂

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30+ Years of Autism and I’m Still Learning

30 + Years of Autism & I’m Still Learning

For more than 30 years, autism has been front and center in our lives. I find it hilarious that some people believe that makes me an “expert.” For one, neither of my kids are alike and another… No one is an autism expert. There are many people with a vast knowledge of autism – and you are the best expert about your child! Never doubt that!

A few weeks ago, the kids and I went on a boat with friends. Casey was scared to get on the inflatable that is pulled behind the boat, but with encouragement, she finally tried. Rob wouldn’t even attempt it and I was so surprised, as I thought he would be the one to jump on without a thought. After Casey rode, I tried and tried to get him to at least walk back and look at it, but he wouldn’t. Finally, I said, “Just take your shoes off and try, buddy!” and he kicked his shoes off, stuffed his socks in his shoes and was ready to get on!

What the heck? Then it dawned on me – he never, ever gets his shoes wet. When we go kayaking, he steps into the kayak without getting in the water. When we go wading, he always takes his shoes off. And he wasn’t able to tell me that’s why he didn’t want to do it – he didn’t realize he could take his shoes off. Casey and I were barefoot, but we were wearing flip flops – he didn’t understand that it was okay for him to take his shoes off and he wasn’t able to tell me that’s why he wouldn’t get on. I simply never thought about it.

Last week, I went into Casey’s room to pull her sheets off of her bed and stepped in water! Her AC had been leaking, but she didn’t see any reason to tell me. Her carpet was soaked and she had to have stepped in it to turn the AC on and off. But, thanks to autism, she didn’t even think about telling me. I forget so often that things that are important to me (like water in the carpet!) mean nothing to them. She wasn’t able to tell me or even think that it was something that I might need to know. Thankfully, the carpet dried faster than I thought and I reminded her several times that she needed to tell me when things weren’t right. (She can certainly let me know when her iPad isn’t working!)

Rob had a problem the other day and he was acting completely out of character. If I was an autism expert, I would have stopped and tried longer to find out what was going on, but as a frustrated parent, I didn’t handle it as well as I should have. When I finally had all of the facts from the situation, I apologized to him several times. I’ll admit – as much as I try to think about every possible trigger when things happen, some times, I’m tired and that doesn’t happen.

Every day, Casey and Rob prove to me that as well as I know them, autism is an ever-changing disability that will never be fully understood by me – maybe even not by them. I don’t think they always know why they do the things they do, but only that they need to do it. Their OCD causes both of them to have rituals to feel safer – she needs to jump into doors and tap things three times. He has to have all of the windows open – except the one in the craft room always has to be closed – or all of them closed and locked. I don’t understand why, but it’s really not a big deal and helps him feel better.

I don’t know why both of them are hypo-sensitive to touch, but he can’t wear certain clothes. To my way of thinking, if your skin isn’t sensitive enough to notice a cut or burn, why can it feel the differences in shirts? He will burn himself in the shower if he turns the water on himself because he doesn’t notice the how hot the water is – but he can’t wear long sleeves because they hurt? I just don’t get it.

I don’t know why some nights, he can go to sleep easily and other nights, he is up most of the night. Usually, if she has a sleepless night, I can pinpoint why, but not him. Water is soothing to him while she barely notices it. Just like everyone else, they have their own preferences and we have to learn to separate what is “autism” related and what is just their personalities. It’s not always easy, either. Every day, I learn more about Casey and Rob.

We have rough days – days that I think autism just plain sucks. Days that I’m so tired I can’t think straight, let alone try to figure out why they do things they do. There are days that I let chores slip and that I don’t think about the future. Let yourself have those days, too. You can’t be “on” all of the time. You will exhaust yourself – and who will take care of your child, then?

Never doubt you are the expert on your child. Doctors and others may know a lot about autism, but no one knows your child like you do. Just remember – while you are your child’s expert, you will never stop learning about autism. That’s the thing about autism – it seems as soon as you solve one mystery, another one will pop up. It keeps life exciting! (I choose to look at it that way so it doesn’t drive me crazy! 🙂 )

Please, though – share your knowledge and experiences with other autism families. What worked for you may not work for them, but you never know. And maybe only part of your solution will help, but often, just knowing other families have gone through the same things, will help. We will all keep learning together to make the best lives for our families. 🙂

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Autism and Doing Things “Our” Way

Autism and Doing Things “Our” Way

I was really struggling to decide what I wanted to write about this week. I don’t know about anyone else, but the last few weeks have been a blur. I haven’t even posted much on our Facebook page. I don’t know why – I just don’t think about it or I’m too tired. Anyway, several weeks ago, Casey used fabric markers and spray paint (for fabrics) to decorate three shirts. She had been asking to tie dye for months, but we just hadn’t gotten around to it and when she finally had a choice, she picked the other way to decorate.

But – as typical Casey – she didn’t forget about the tie dying. She absolutely loves anything tie-dyed. The brighter, the better. She even has crocs that are tie dyed (tho she rarely wears them – I don’t think they are as comfy as she thought they would be). Mandy bought her two white shirts on sale and Casey began to remind me every few days she wanted to tie-dye them. Finally, last week, I remembered to order the stuff and today, we did her shirts.

I can’t even begin to tell you how excited she was! Huge grin, eyes sparkling, dancing around. I had looked up how to make different patterns and couldn’t wait to show her.

Casey, as usual, had her own ideas.

She carefully told me where to put rubber bands on the first shirt (one snapped, so she refused to try it herself). I just started to tell her how to put the dye to make patterns when the dye started flying. She went up and down the shirt squeezing the bottle as hard as she could and all ideas for special designs went out the window. But, as I stood and watched her carefully squeeze dye where she thought it needed to be, I noticed the twinkle in her eye and the big smile on her face. And I knew what my blog today would be about. It’s really simple – there is more than one way to do things.

Sometimes, we get so stuck on how we think things should be – how children will walk down a hall, how to tie shoes, how to sit at a desk, how to hold a pencil – that we forget not everyone thinks like us. And that is even more important when you have a child with special needs. They are incredibly able to adapt situations to fit their own needs. We forget that – I think because, especially with people with communication issues – because they won’t speak up for themselves and say “I want to do it this way!”

When she finished with the first shirt, she looked at me. I knew by the look in her eyes, she was wondering how to do the other one differently. I told her she could “color between the rubber bands” and that’s what she did – in her own pattern and squeezing as much dye as she could into each area. She still had the big smile and now she was giggling about it, too. I would have missed those special moments if I had made her do it the way I thought she should.

Living with autism for more than 30 years has taught me many things but the most important is to always think outside the box. Think outside what is considered “normal.” It doesn’t matter how you get to your goal, as long as you keep making progress in that direction. I had some wild ideas to help the kids when they were little. Some worked, some didn’t. And that’s okay. We just moved on past the ones that didn’t work and kept moving forward. Don’t get caught up in “the way it’s always been done.” Just because something has always been done one way doesn’t mean there aren’t better ways to do it.

Let your child be your guide. Use their interests (obsessions) to help teach other skills. Elmo showed Casey many things and I used lots of lines from the original Willy Wonka and Wizard of Oz to help Rob understand things. He knew those movies – he understood the words so I used them in odd ways, but it worked. Always think outside the box – who cares how silly something seems, as long as it helps your child?

Casey has very definite ideas about how her clothes need to be folded and put away. Rob couldn’t care less about how they are folded, but they need to be in a certain place in his room. And both ways are okay. Their laundry is folded and not on my dining room table, so I’m happy. I’m not going to ask either of them to do their laundry the way the other does.

Your child may be having sensory issues and that may be why they can’t do things the way you think they should. Maybe your perfume is too strong. Or the lights are flickering so much they can’t concentrate. Maybe their shirt is painful or they are hungry. Until your child can tell you why they don’t want to do things your way, you have to learn to relax and be happy they will do it their way.

There are a million ways of doing things. As long as your child is making progress, who cares how they get there? Relax and be happy!

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Autism and Little Tiny Steps Forward

Autism and Little Tiny Steps Forward

Yesterday, I heard about a Fountain of Dogs that a city not far from us has and decided to take Casey and Rob today. Casey had already asked about going for a long hike and I knew it was just too hot, so we went to the fountain instead. I knew she would like it just because we went somewhere and I thought he would because it’s water.

It is just as it’s described. A fountain with dogs in and around it – all spraying water at the center where a giant golden bone is displayed. She was laughing as soon as she saw it. He walked quietly to it and just stood there. I could almost see his shoulders relax as he watched the water sprays. Soon, he was sitting on the edge. He didn’t smile. He didn’t touch the water. He just watched. And his body became even more relaxed. When a bench in the shade became available, he moved to it and again, he was the picture of complete relaxation.

Casey, of course, had to get her picture taken with several dogs and had to try the drinking fountains (they were off because of the virus, I am assuming). She had to walk all the way around the fountain. I sat on a bench near Rob and enjoyed the fountain. As I watched them, though, it occurred to me that it wasn’t too long ago a trip like this would not have been a good idea.

For one thing, keeping Rob out of water has never been easy. He is drawn to it (aren’t many of our kids??) and can’t resist putting his hands in. He did dip his fingers this morning, but he made no effort to jump in the fountain. When he was little, I would have been sitting on him to keep him out – and Casey, too, probably. Visiting the fountain would have been an epic failure.

And – I let Casey walk around by herself. The fountain is on the corner of two busy streets (but, it’s Sunday, so not as much traffic) and even a few years ago, I wouldn’t have let her get that far from me – especially near streets. She has a history of bolting when she sees something she wants. But, today, I sat in the shade and watched her wander around and check out all of the dogs. She got right down beside a few of them and looked right in their eyes. (She even sat on a few!) Rob watched the water and never said a word.

As I sat there, I wished that the other people who were there had a clue just how huge this was for us. I wished someone else could see them enjoying something so simple – and that I was enjoying it, too. I wasn’t trying to keep her from bumping into people (she really doesn’t watch where she is going!). I wasn’t fighting to keep him out of the water. I wasn’t trying to keep him quiet. I was sitting – just like the other parents. It’s an odd feeling.

I thought of the many, many times we had to leave somewhere before everyone was ready because of autism. Whether it was a sensory overload or a meltdown from hunger or heat that they couldn’t communicate to me. Maybe it was just too much for me to keep fighting to keep one safe while the other wanted to run. Maybe I just didn’t want to deal with the stares. There have been lots of reasons why we didn’t try (or didn’t stay long!). But today – all of those little, tiny steps forward were obvious.

And that’s one thing about autism. There are always steps forward. They may be incredibly small, but they are there. Maybe your son hung up his coat or your daughter took her dishes to the sink. Maybe someone learned to put on their socks or grab their backpack as they left the house. Everything that so many other parents take for granted – we celebrate! Because, we all know, for every step forward, there will be one back. Sometimes, it feels like you are just stuck in the same place – no progress, no improvements, no reason to celebrate. I’ve felt that way – many times.

The funny thing is, I remember one particular rough time. It seemed like neither was making any progress – that we had been working on the same darn things forever and a day and weren’t getting anywhere. I was tired – fed up – discouraged – done. I just didn’t have the energy to care about those baby steps anymore. But, my aunt and uncle were visiting from Minnesota and we went to my mom and dad’s house to see them. (Honestly, I was ready to say “nope, ain’t coming” but I really missed my aunt and uncle, so I dragged the kids out of our house.) Anyway, while we were there, Rob was upstairs doing Rob stuff and Casey was sitting in the chair, smiling.

I was flopped on the couch next to my aunt when she said she just couldn’t believe how different they were from when she had seen them several months ago. I remember just looking at her wondering what she meant. She went on and on about the differences – how calm she was – how she was willing to talk a little more – how he looked at her when my aunt said hi to him – how quiet he was upstairs. And I was ashamed of myself. I couldn’t see the forest for the trees, apparently. Once someone else pointed out their progress, I could easily see it. Sometimes, it takes an outsider to show us just how much progress our kids make – every day!

When you are living the slow, steady path with all of the setbacks we see, it’s hard to see that your child is going forward! It’s happened to me, many times. You get so blinded by the long lists of what they can’t or won’t do, you forget there is a long list of what they can do! (Personally, this is one reason I hated IEP meetings so much. They were always about what Casey and Rob couldn’t do – not what they could! I thank God that their teachers always started with the list of awesome things they could do to start off. I wish all teachers could do that!) You forget that last week, he couldn’t make his bed or she couldn’t rinse her hair.

You forget that you couldn’t let go of their hands for fear they would take off. You forget that they can shower on their own and fold their clothes. You forget that they say “Hi” and name the person they are talking to. You forget that they stand for the flag and the National Anthem. You are too busy remembering he can’t tie his shoes and she can’t count money.

I encourage each of you to stop thinking about the can’ts for a few minutes and look how far your child has come. Enjoy every single one of those baby steps forward – shout it from the rooftops! Brag on Facebook! Send out texts – let everyone know about the steps forward! Those little steps are just as important as the big ones – and acknowledging those steps will keep you going during the rougher times.

Maybe one day, you will be able to sit by a fountain as your daughter explores the area and your son quietly relaxes in the shade. Nothing is impossible! 🙂

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Autism and Mom Guilt

Autism and Mom Guilt
Autism and Mom Guilt

Later today, we finally be celebrating my niece’s high school graduation.  The party is at her grandparent’s house.  I’m feeling so guilty because I’m not taking Rob.

He is welcome, of course, and no one would mind his noises.  But, we were there the other night and he “claimed” a spot in their living room as his safe place.  Bill and Reeva don’t care, as they love him.  But – I can’t be sure he won’t go looking for things to rip up, so I will be constantly running in to check on him.  And I just don’t want to.

Yeah, I know that makes me sound terrible.  Tracie is going to help keep an eye on them, but I don’t want her stuck in the house with Rob.  She is family and should be able to relax and visit, too.  And, the weather is supposed to be stormy off and on all day.  And, I am just not feeling very patient today.  I just want to talk to people.  Selfish?  Yeah, but that’s how I feel.

Last night, I found out Mandy’s plans had changed for the day and she told me to ask him if he would rather go to her house.  Truthfully, I know he would much rather do that.  She is even going to take him out for supper somewhere.  He will be happier.  I will be happier.  Casey will be happier.

I still feel guilty.

I am a firm believer in people with autism pushing their limits.  They need to experience life and all the joy that comes with it.  They need love and support to learn about the world.  I think I do a pretty good job of pushing them.

Today, I just don’t want to.

Today, I want to take pictures of Lacey and her party guests.  I want to sit down and actually eat a meal.  I’m not sure when I did that last.  Probably lunch with Tracie on Thursday.  I want to laugh with my brother and talk to people.

I want to watch Casey have fun.  I want to wonder what she is thinking as she watches other people.  (Though, honestly, much of what she is thinking is – I’ll sneak another cookie when mom isn’t looking.  😊  Her mom isn’t as blind as she thinks!)  I want to help with anything Lacey needs or just sit and watch clouds go by.

My head knows I’m doing the right thing by taking him to Mandy’s.  He will love having her all to himself and she will spoil him.  He doesn’t really want to go to the party, anyway.

But… My heart is worried that he’ll think he isn’t wanted or welcome there.  My heart aches that he ever feel that way.  As so the war between head and heart rages.  I hate it.

I wish he was able to say he doesn’t want to go – or that he does!  It’s silly, of course, as I know Rob.  A choice between this party and Mandy is a no brainer – he will always pick her.  I feel guilty because I’m not asking him. I’m just doing what I think is best.  As a mom, that’s what I do.

But, he’s an adult and should be given choices.  And yeah, I know – he is a child in many ways and still needs guidance.  I just always try to give them choices whenever is possible.

I hate mom (or dad!) guilt.

I can hear Mandy’s voice in my head – get over it, mom.  He doesn’t want to go to the party.  😊  So that’s my plan. I still feel guilty not asking him what he wants to do.

But one thing I have learned over 30 years of living with autism… Sometimes, you gotta do what’s best for you and your other kids.  Today – that means Rob will be going to Mandy’s to be spoiled while Casey and I go celebrate Lacey.

It’s hard to do, but please – throw away the guilt and do what’s best for you sometimes.  You deserve it – you need it.

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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!