Category: autism acceptance

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Why Autism Families Need a “Village”

Why Autism Families Need a Village

I’m sure you have heard the phrase “It takes a village to raise a child.”  This is even more true when you have a child with autism or any special need.  Villages are hard to find when people are intimidated or scared of your child, of your life.  Add to that the fact that trusting people around your child is so hard and families like ours often feel alone and isolated.

I don’t purposely limit our “village” but I also don’t let people in easily.  Casey and Rob (and Mandy and I!) have been hurt too often.  Even when I know someone would never hurt them, it’s still hard to let people see our “real” lives.  Reading about it here is one thing.  To actually be in it?  That’s a whole different ballgame. Maybe I just don’t want to see the look on their face when Rob starts getting loud or Casey gets upset over some little detail.

It’s easier to keep us closed off.

It’s not better for us – I do know that.  I know they need to try new things and meet new people.  I know that the best way to spread autism awareness is to be out in the community and let people see the real us.  But – it’s hard.

Last week, I was shown, again, that being open to new “villagers” can be amazing.  I have known Susie and Gene for years and years – even before Susie moved next door to us.  Since our houses are close, I know she has heard my circus – the yells and meltdowns and everything else.  But – I don’t have to see her hear it, if that makes sense.  I don’t have to see the look on her face. I can just apologize later.

So, they aren’t strangers, but it was still hard to think about spending an afternoon at a lake with them.  Susie and Gene have a boat and an inflatable ride-on to pull behind it.  I wanted the kids to have something new and exciting this summer, since we had to cancel so many things.

But….  What if Rob started his anxiety song?  What if Casey got upset?  I didn’t want to ruin their afternoon.  I was excited to go, but at the same time, I thought about canceling several times.

I worried for nothing.  Casey and Rob loved it!   When it took Casey several tries to be brave enough to step onto the inflatable, it was no big deal.  They were patient and kind.  When Rob tossed a towel (and later, a bucket) overboard, they laughed and said it was no big deal.  I was embarassed and was ready to just go home.  (Actually, had we not been in the middle of the lake, I probably would have!)

The afternoon was amazing. Not only because it was a beautiful day to be on the lake, but because I could relax and let the kids be who they are without worrying. I’m not sure Susie and Gene really understand what they did for us that day. It is more than just taking us to the lake. It was acceptance and caring. As you know, that doesn’t happen often! Our “village” grew that day.

Autism families need support and it’s hard to find. Yes, we need doctors, therapists, teachers – but we need friends just as much, if not more. We need those people who happily invite our family to their events and assure us everyone is welcome.

We need the far away friends who text, just to say hi and make us laugh. We need friends who aren’t autism parents to include us and cheer with us when our kids reach a milestone. We need shoulders to cry on and friends to lean on when life just gets too tough.

We need the support of our families (so many don’t have this and it’s so sad!). We need staff we can trust who love our kids. We need people to understand why we turn down invitations, sometimes, but who will still invite us. We need acceptance.

We need our village. And we need to let more people into our village – to love us and our kids.

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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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Autism and Toxic People

Autism and Toxic People

For some reason, I’ve seen a lot of posts this week about toxic people. You know the kind – the ones that are hard to be around because they are never happy and seem to bring out the worse in the people they are around. Or, in the case of people with autism, they think you can “discipline” the autism out of a person or that the autism and everything that comes with it are made up. I’m sure you know people like this.

This week, the question seems to be what to do if a person like this is a member of your family. As unbelievable as it is to me, I’ve actually seen conversations that wonder if it really hurts their child with autism if someone doesn’t accept them – or if a family member “means well” but is still not a positive influence for the child. I don’t care who that person is – your child deserves to be treated with love and respect. If a family member can’t do it, then avoid that person. Simple as that.

Even if your child can’t say something hurts them, you should know that if it would hurt you to hear it, then it hurts your child. Just because they can’t talk, does not mean they can’t hear and feel! I can tell by the way Casey and Rob are acting if they are getting upset. Or by the look in their eyes. Or if they really don’t want to spend time with someone. And I follow their lead. I refuse to force them to be around people who cannot love and accept them for the amazing people they are.

I know there are a lot of families out there with people who just think if you would discipline your child more or if you would stop “babying” them, the autism would disappear. Often, it seems to be older people, as when they were children, no one had ever heard of autism – people with disabilities were either put in homes or kept out of sight in the family home. They didn’t go to school. They didn’t go to church. They were hidden. So, I can sort of understand why elderly people think they way they do… but that does not mean I’ll let anyone be mean to my kids. Love us as we are or get out of our lives.

There are a few family members that Rob has issues with. Luckily, these are not people he is around often and when he is, it is for a very short amount of time. Casey doesn’t have the same reaction as Rob does. If she is hurt by someone, she tends to avoid that person and ignores them when she does have to be around them. She also has a tougher skin than Rob does and doesn’t take things personally like he does.

He will get anxious and loud and the more the person tries to get close to him, the louder he will get. It can last for hours when he gets home and nothing I can say will convince him that he is an awesome young man and that person who was mean to him is an idiot. So – we avoid. I let him take the lead. If he doesn’t want to see someone, he doesn’t go. There have been times that I know he doesn’t want to go, but he won’t let Casey go by herself, so he reluctantly will follow her. It is truly amazing to see the love and care he has for her.

I know it isn’t easy to avoid family members, sometimes. You can always try to educate those people – let them know that you aren’t babying your child when you bring their favorite foods to family meals. Explain why you do it – because of sensory issues. Try to explain a few times, then drop it. If that person is rude enough to continue commenting about you giving in to your child, then tell them to back off. Some people will never understand and you can’t let your child suffer because of it. Either avoid that person or stand up to them. To protect your child, you don’t have many choices.

And you have to protect your child! Yeah, I know it’s easier to avoid confrontation. But – what’s the cost? Your child’s self-esteem and happiness. Are you really going to let some jerk destroy that? I know you are overwhelmed at times and the path of least resistance is always desirable. But, the damage that can be done to your child is unimaginable. You have to protect them!

I will admit – there have been many times that I was one of the least liked people in the room. I didn’t like that feeling, but I had to be that person to keep Casey and Rob safe. I had to make phone calls that no parent wants to make. I had to go to meetings and struggle not to scream at people. Most autism parents have been in that place. Fun, isn’t it?

But – Casey and Rob, Mandy and Cory always come first. I will stand up for them and defend them against anyone. That’s what a mom does, after all – or what a parent should do. It won’t be easy to avoid toxic family members and I doubt you will like doing it (although, I will admit – there are a few people that I joyfully avoid now! 🙂 ) but you have to think of your child’s well-being first, last and always.

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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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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.

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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 – Why are You Sorry?

Autism - Why are you Sorry?

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

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

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

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

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

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

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

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

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

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

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Autism and Crazy Christmas Tension

Autism and Crazy, Christmas Tension

When Casey was little, December was never a good month for her. For years, she started acting out and having meltdowns near the first part of the month that lasted until Christmas. I could never understand – we stayed with our same routine. We didn’t go overboard with activities that she couldn’t handle (while all the time making sure Mandy got to do what she wanted during the holidays.) I love Christmas, but I dreaded the month for years.

She finally started relaxing, a little, in her mid teens, but she still has an exact list of what she wants to happen and she will remind me of that list often. When she was in her early 20’s, I finally learned why December was so hard for her all those years ago and it about broke my heart.

Santa. She was never sure she had been “good” enough for Santa to bring her presents. She knew her behaviors weren’t acceptable – she knew I was upset. She knew she shouldn’t scream and beat her head. And she knew Santa wouldn’t like it. So she worried that Santa wouldn’t bring her any presents because she was “bad.” (Let me say right now – I NEVER called her bad for her meltdowns!! I was stressed and I cried about it, but I never told her she was bad). I could still cry thinking about all those years that my sweet little girl worried about Santa not being happy with her – and not being able to tell anyone what was wrong, so she screamed. She ran from teachers. She beat her head on walls. The month seemed endless at times.

I only found out what had happened because of Casey’s incredible memory. We were reading a Christmas book one year and she said, “bad.” I told her she wasn’t bad. She looked deep in my eyes and said, “Screaming bad!” I told her that screaming hurt my ears and she needed to tell me what was wrong instead of scream. Still looking so serious, she said “Screaming bad, no Santa!” and I finally knew – ten years later why she had such a hard time in December.

Everyone, everywhere is telling kids to be good or Santa won’t come. Imagine how you would feel if you thought you were a bad kid – that your sister and brother were good, because they didn’t scream – and you couldn’t tell anyone that you were scared Santa wouldn’t like you? How sad. I still get choked up thinking about that. What could I have done differently? What could I have said that would have alleviated her fears? And why didn’t I know it then? (nothing like a nice load of mom guilt for the holidays, right? UGH!)

I’ve let go of the guilt now. I still wish I had known, but I can’t change it. Casey loves the entire holiday season now, so she wasn’t scarred for life over her misconceptions of Santa. But, still…. sometimes, autism sucks.

Casey is well into her list of needs for Christmas. She has reminded me about 100 times since noon yesterday that she wants to go see Christmas lights tomorrow. (WHY did I tell her I was thinking about going???) We had a long discussion about where we were going to go (It’s posted on our Facebook page) and what we would see. She is excited – another thing to be checked off her list of “must-do’s” for the season.

She watched me wrap a few presents earlier today. I asked if she was going to make her presents this year or buy them. “Make.” ok – what do you want to make? “Ornaments.” Ok – do you want to paint them or use foam pieces? “Paint.” Ok – I’ll get you some and you can make them. “Buy!” Yes, I will buy some. “NO! BUY!” You want to buy your presents? “Yes. Shopping.” OK – we’ll go shopping. “Paint?” Casey – are you going to buy or make your presents? “YES!” and she giggled and danced out of the room. I have no clue what she wants to do.

Meanwhile, Rob heard the conversation and said “Cory? Mandy?” Yes, Rob you can buy them presents. He laughed and went back to his iPad. He keeps life simple. He won’t remind me constantly that we haven’t shopped, yet. He’ll go whenever I’m ready. He’ll wrap when we have time. He may or may not tell people what he got them. 🙂 He’ll go see lights and the only thing he’ll remind me about is that he would like a snack from somewhere.

Casey is laying on the couch now, giggling about the Christmas dance next week. She looked at me and reminded me that she needed to wear her light up necklace and head band. And a Christmas shirt and Christmas socks. I told her I wouldn’t forget (like she would let me!) and she went back to her iPad. Another thing on her list that we have to do every year.

The holidays may be hard for your child, too. You may see more behaviors. You may hear more screams or less sleeping or their diet may change. While you are looking for possible reasons why, look outside the box – sometimes, way outside the box. Whatever is bothering your child may have nothing to do with Christmas at all. If I’ve learned nothing else from 30 years of living with autism it’s to expect the unexpected and to know that nothing is too far outside the box to be true.

I’ve tried some weird ideas to help the kids. Some worked, some didn’t. The point is – be open to trying the strangest things. If your child can’t tell you the problem, how can you possibly know the answer? Just like with Casey and Santa – I never guessed that was her problem. Don’t limit yourself – you never know what might work for your child!

Casey is back. She just reminded me that I told her we could do a Christmas craft today (and yeah – I completely forgot! 🙁 ) She also reminded me that we are going to see Christmas lights tomorrow and see more on Christmas Eve and that we are making cookies with Mandy on the 22nd. Oh – and the dance is the 19th. Time to distract her with pretty papers before she really gets going on her list of plans for the holidays!

Have a great week, everyone! Take time to breathe and enjoy the peace of the season!