Category: autism and siblings

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Autism and Typical Sibling Behavior

Autism and Typical Sibling Behavior

Every mom knows the scene. One child is upset and the other is making things worse. I’ve shared before how Casey and Rob will try to irritate each other at times, just like typical siblings.

It happened again last week. I’m still not sure what was upsetting Casey, but she yelled once. I went to her to try and calm her before she lost control and seemed to be making progress – until I saw her eyes change and another yell came out.

At the same time, I saw a reflection behind me. Want to guess who was standing in the hall laughing at Casey? Yep… Her sweet little brother. 🙂

I told him to leave her alone and go watch TV. Rob pointed at her and said, “No fits, Casey!” as he turned away, giggling. She was furious! I stepped in front of her and started talking about different things we would be doing this week and she calmed down.

Until we went to the living room and Rob started in on her again. “No fits. That’s bad. No yelling.” And he was laughing. I finally had to send him to his room with his iPad so I could calm her down.

Don’t believe for a minute she never picks at him. Yesterday, it was his turn to pick the CD in the car. He did and I asked Casey to put it in. Instead, she picked what she wanted. When it started playing, he went on repeat “mix! Mix! Mix!” While she looked straight ahead with a big smile on her face. (I changed it to his, but she kept turning around and grinning at him).

While they do pick at each other, they are also fiercely loyal and watch out for each other. Casey will tell me if someone is mean to Rob and Rob holds her hand when we are in crowds. (Neither of them like crowds, but she wants to hold onto someone so she feels safer).

When he can’t find her, he asks where she is. If she gets home first, she asks for him (though, often, she doesn’t think about him until her color by number pages are done! 🙂) But, that’s siblings for you!

I’ll admit, it’s frustrating to me when they pick at each other, but at the same time, I’m proud of them. They are siblings first – autism is secondary to that and it shows!

Autism doesn’t define them and you shouldn’t let it define your child, either. Autism is just part of who they are, like their hair or eye color. Your child with autism needs the same rules as your typical children.

Enjoy the sibling squabbles. Be happy they are aware enough of each other to argue like siblings always do.

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Autism and Awesome Surprises

Autism and Awesome Surprises

This has been an up and down week. I ended up in a boot for an injury from a few months ago, Casey had a really rough evening a few nights ago, today was supposed to be the baby shower and the time change. Despite all of that, I just had something happen that proves again that autism can always surprise you in good ways!

Rob has had a few loud days this week, but nothing that would make me want to increase his meds back to what they were. But, my little guy has shown his sense of humor, his wonderful singing voice and an even better surprise this week, too!

One day when I went to pick them up, a staff person came out with them, so I knew something had happened. It turns out Rob had taken a deck of cards and wouldn’t give them back to staff. I looked at him, said “give me the cards” and he opened his lunch box and handed them to me. I was surprised he handed them over so quickly, but didn’t really think much about it beyond maybe he was growing up a little.

Until we got home and he rushed to his room – to pout, I assumed. When I noticed he hadn’t even stopped to get his pills and snack, I peeked in his room to see him dump out another (bigger!) deck of cards! The little turkey happily gave me the smaller set and kept the larger one for himself. While I did take them away and told him he had to take them back the next morning, I had to giggle to myself that he thought things through so quickly that he kept the larger one for himself and handed over the smaller deck. That’s a lot to think through – especially when I was waiting for him to hand the cards over in the parking lot. 🙂

As we were coming home one evening, Alabama’s “Dancing, Shagging on the Boulevard” was on the radio and Casey and Rob were both dancing in the car. When we got home, I heard Rob singing “Dancing, shaking that big ole barn!” 🙂 He rarely sings when I can hear him and I wish he would do it more – he has a beautiful singing voice – just like Casey does! 🙂

But, really, the coolest thing of all just happened a little while ago. Every year, I struggle to think of what he might like for Christmas. He will only say he wants “presents” with no comments beyond that. So, I guess what might make him happy and hope for the best. Today, though – today! He wrote a letter to Santa! The first one he’s ever written! I’m so excited and happy. It took 29 years – but it did happen!

And this proves what I’ve been saying for years – you never know when something will click and your child will have a new skill! It’s hard to be patient. It’s hard to keep going over and over and over the same things every day and not be exhausted. It’s hard not to be impatient and discouraged. I get it. I struggle with that every day, too, but it’s days like today that remind me all of that hard work is worth it. Honestly, Rob didn’t see the big deal in writing his letter – he looked at me like I had lost my mind. (And yeah – he might be close to the truth there! 🙂 )

And now, something else. Casey is struggling. Today was supposed to be Raylan’s baby shower and she’s having a hard time with not being an auntie today or having the shower. She had a major meltdown a few nights ago and is close to one again. She is laying on the couch listening to Christmas music as she tries not to cry. Rob just came in and sat down close to her and said, “It’s alright, Casey. It’s okay, Casey.” I could cry – usually when she’s upset, he laughs at her and says something like “no fits, Casey!” just to make her even angrier.

So please – keep dreaming for your child. Keep fighting for what they need. Keep your faith that one day, they will gain the skills that you are working on so hard right now. You never know when your surprise will come!

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The Difficult Dance of Parenting Autism and Typical Children

The Difficult Dance of Parenting Autism and Typical Children

Being a parent isn’t easy. Besides the typical day to day care, you are also responsible for helping your children grow into loving, kind, responsible adults. And when you add autism into the mix, it becomes a dance of never letting the typical sibling feel like their sibling with autism is more important than they are.

I’ve heard so many horror stories of the typical sibling ending their relationship with their parents so they can avoid being around the special needs sibling. Or, in the case of one family I know, they ask their elderly mom to move closer to them – but only if she puts their special needs brother in a home and not go visit him. I simply can’t imagine that kind of pain.

While Mandy is quick to say that she never felt resentful of Casey and Rob (except for when they took equine therapy – she was obsessed with horses and wanted to ride, too! Thankfully, the stable allowed her to ride at the end of the sessions, but I never felt like it was enough), I remember times that she was mad at them and for good reason.

Rob cut apart a necklace that was very special to her. Casey chewed the feet off of all of their Barbies. Rob chewed the horns off of her unicorns. Casey (the girls shared a room) wasn’t as interested as Mandy was in having a clean room. Rob did this – Casey did that. And every time, my heart broke for Mandy. All I could do was tell her they didn’t understand. In the case of the necklace, I was exhausted, stressed – and I didn’t handle it well at all. Mandy was furious – I simply couldn’t handle it…. and I told her she shouldn’t have left it where he could get it. Knowing even as I said the words, she didn’t leave it lying around. Knowing I wasn’t handling the situation right at all. And knowing I would be crying ugly tears that night in bed. I was failing her.

That being said, Mandy was also the first to defend Casey and Rob. And when she lost her temper, she was a force to be reckoned with. She might have inherited my temper – seeing someone treated unjustly still brings out that side of her. And I’m proud of that. I got a call when she was in 6th grade. A brown=nosing classmate told the teacher Mandy was mean to her. The teacher, assuming Mandy would never tell me she had gotten in trouble, called me. Mandy told me right away what had happened – and it was nothing like the teacher had been told.

The teacher felt I should take Mandy for counseling and possible medication for her “anger issues.” I’m sure after our conversation, that woman thought I needed the same, but I let her have it. Mandy admitted she did call the other girl a name – but only after the classmate made fun of another girl in their class. I also got a call from the high school once. Mandy happened to overhear a boy calling Casey a name – and again, she let him have it. She was called a bully – the boy was ignored. I told Mandy I would always stand behind her. If she got suspended for standing up for Casey or Rob or another student, we would go shopping and have a fun few days.

But – it was hard. For most of Mandy’s special events, many times, only one parent could be there. When possible, I left Casey and Rob with my parents or Tracie so we could both be there for Mandy. I hated missing things and was so worried she would start to resent autism. She denies thinking this – it’s just my mom guilt talking.

I tried to remember all of the ways my parents made my brother and I feel special and did them with Mandy. There were times I told her she looked “sick” and I called her off school, sent Casey and Rob and we went shopping. They were sent to bed earlier and we stayed up watching movies. We played games. Anything I could think of that would be special memories to her. It wasn’t easy and still feel the guilt of sitting at the top of the stairs playing horses or Barbies with her so I could still hear what was going on downstairs. I hated being torn and not being able to completely focus on her. She says she doesn’t remember it that way – and I thank God for that.

I know you are exhausted from the 24/7 care for your child with autism. But, please, find little ways to let your other children know they are just as special. Put notes in their lunch box. Text them. Play games. Skip school. Put everyone else to bed early. There are a million little ways to let them know that you are always thinking about them. Take turns with their other parents doing something special. Or ask a grandparent to stay with your child with autism. (Yes, I know finding someone you trust to stay with your child with autism is hard – sometimes, impossible – but it’s so important!)

At our autism support meeting last week, it was suggested that at our next meeting, we talk about how to help typical siblings understand their sibling – how to parent both. Mandy spoke up and said she hadn’t felt any less important or special than Casey or Rob – that she didn’t resent them at all. I’ll admit – I had tears in my eyes. I don’t know how I did it, but somehow, I got lucky enough that she grew up feeling important, cherished and loved.

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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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Autism Win – An Amazing Experience for All

Autism Win - An Amazing Experience for All

Let me tell you – I am still so awestruck and excited about how well our trip went last week! You know I was worried – I shared that last week – but I’m so happy to say that we had a wonderful – awesome – amazing time! Autism didn’t bother us at all! (Partly because we planned so well, but also because Mandy and I are always aware of what bothers them and what could go wrong! Have you seen the meme about autism families scanning the room better then FBI agents? Yep – that was us! 🙂 )

One of my biggest travel worries was finding a safe bathroom for Rob. Happily, we discovered the Pennsylvania turnpike has family bathrooms at every stop! There was one time on the way home that it was occupied and he really needed to go and took off for the men’s room. I waited as patiently as I could outside (seriously – how long can it possibly take?? ) and he was fine. He danced out with a grin on his face and wiping his hands on his pants.

The ocean was beautiful! We dropped everything in our hotel and went straight to the beach. I tried to warn Casey that the waves are stronger than she knows, but she ran right out in the water. The first wave made her stumble and the second knocked her over. She got a face/mouth full of salt water and was not happy. She ran back to the beach, gagging and trying to get the salty taste out of her mouth. After that, she was more careful about how far she walked into the water. She was happy standing and letting the waves flow around her legs.

Rob went in to his knees and stopped. As the waves splashed, he said “It’s wet, Grandpa Mack!” (Grandpa was at home – not with us! 🙂 ) He just stood and watched the water. Soon, he backed up and sat down. The longer he sat, the more relaxed he became. He was almost asleep at times and always had a small smile on his face. He didn’t say another word – just watched the water. Casey got hungry, but he refused to leave the beach for chicken! I knew then that the ocean was a huge hit! We enjoyed the beach for a long time after the girls went back to the room.

When it was bath time, we discovered the room only had a shower – and Casey doesn’t do showers. But, again, we were amazed that she jumped in without a problem. The room had a pull out couch in a little alcove under the air conditioner and Rob claimed that area as his. They both went right to sleep – another win!

Wednesday morning, we went to Sesame Place. Even with all the research Mandy and I had done, we were both a little nervous about how the day would do. We got special wrist bands so we could skip the lines at rides and rode a roller coaster. (I really do NOT like those things!) We checked the schedule and discovered we could go meet Elmo!

Rob had no interest in waiting for Elmo, so Mandy took Casey to meet him and Cookie Monster while I took Rob on a few rides.

I was on a ride when she met Cookie Monster, but Mandy told me how she lit up – ran up to him and got a hug. I did see her face when she turned the corner and there was Elmo! I took 15 pictures of her as her walked up to him wearing her Elmo shirt. I wish I could describe her face – complete, total and pure joy is the only way I can say it. Her smile was huge – her eyes were twinkling. She has seen Elmo in shows, but to get to hug him – meet him – say hi – it was like a dream come true to her. I had tears in my eyes watching her happiness. I wish every parent could experience a time like this with their child.

After lunch, Casey wanted to meet Big Bird, Bert and Ernie. Rob had no interest in that, so Mandy took him to a water playground while Casey and I got to see a show and meet her “friends.” She waited so patiently to meet each of them – and was dancing with excitement while waiting for Bert and Ernie. She couldn’t take her eyes off of them and ran right to them when it was her turn. (Another awesome thing about Sesame Place is that they have photographers to take pictures of your group throughout the park and you can purchase those pictures when you leave. But – at each “meeting” place, there is a staff person who will use your cell phone to take pictures, too!)

We changed into our bathing suits and found Mandy and Rob at the water play area. And here was the worst thing that happened on our trip. Rob was standing under a water spray and was finished on the water slides. Casey wanted to go down them, so I took her. I told her over and over when she got to the bottom to wait for me (I was about 10 seconds behind her). When I got down, she was gone. Just GONE. The place was packed and I panicked. I knew she wouldn’t leave the play area, but still.

I ran to Mandy and she started looking, too, but she needed to stay near Rob. She looked as much as she could while I ran around the water area. Finally, (and though it seemed like hours, it was really less than 3 or 4 minutes) I saw her at the top, in line for the slides again. I saw red. I went back to Mandy to let her know I found her and she went up to get her. At first, Casey said no when Mandy told her to come down, but she seemed to notice Mandy was as mad as I was and decided to come down.

Casey kept giggling because she was nervous that we were angry. We kept telling her she CANNOT leave like that – that she scared us. She finally seemed to understand, but I can still feel the panic we felt. They are adults and they need freedom – but not hundreds of miles from home, in water, with thousands of strangers. Nope, no way. Stay with us or we leave. It’s simple.

After the water, we found a cool, shady spot to watch the parade. Casey was still so excited and Rob was doing well (thanks to the water pouring on him for an hour!) but Mandy and I both knew they were going to be ready to leave after the parade. The excitement overload was coming. She enjoyed the parade and then went shopping for souvenirs with Mandy while Rob and I waited on a shady bench. He was about to overload from the heat and the excitement and had no desire to go into a crowded little store.

Casey was thrilled to discover she could buy Sesame Street socks at Sesame Place! And “da biggest Big Bird.” And then it was time to go back to the beach.

We sat on the the beach until almost dark that night. Casey and Rob both crashed quickly that night and slept even better than they had the first night away.

Thursday morning, when Rob got up, he said “Tomorrow’s Hopewell?” I said yes – and he jumped up, started putting his socks on and said “Let’s go!” But he was fine with going to the beach again before we left. When we got back to the room again, he started packing everything. When I came out of the shower, most of the luggage was already in the car. They were ready to come home.

We never heard Rob’s anxiety song. He only asked for Hopewell twice Wednesday morning before we went to the park. They both ate and slept well. They rode quietly in the car (they have always been easy in the car). They looked out the windows and just enjoyed the ride. (By the way – Rob was beyond thrilled with the wind turbines he saw in PA. He turned around in the seat and watched them as long as he could)

Last week was more than a wonderful vacation for us. It gave me hope that Rob can enjoy new places and that his anxiety won’t always be so hard for him. It reminded me again to never underestimate them. Autism is always with us, but we can still have a fun family time away. We may not go and go and go like some families, but we can do what’s best for us and have an amazing time. We adapt and plan, adjust and revise. Then we go and hope the for best.

And sometimes, like last week, it all works out and we have beautiful, relaxing memories of the ocean and pure, excited memories of Elmo and friends.

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Leaning on Each Other – Siblings with Autism

Leaning on Each Other - Siblings with Autism

Most people assume that since Casey and Rob won’t talk very much that they ignore each other, too. And sometimes, that’s true – what siblings pay attention to each other all the time? But they don’t ignore each other. Autism doesn’t define their relationship with each other or others. Their personality does.

Last week, Tracie and I took them hiking at a state park near us. Casey and Rob were so excited to finally be hiking with Tracie and couldn’t wait to get there. As soon as we got out of the car, Rob took the lead and Casey followed. Every time we came to a different path, he took the lead and she followed him. She completely trusts that he will find his way back to the car. The funny thing is she rarely turns to see if Tracie or I am following them.

As we were walking, we came to a huge tree that had come down over the path. Rob sat on it and swung his legs over. When he was on the other side, he stopped to wait for Casey, who for some reason, couldn’t figure out how to get over the tree! We had to help her and they both started walking on the trail before they made sure Tracie and I got over it! They both trust that we will never leave them alone and we will eventually catch up.

It’s funny. They lean on each other in different situations. Rob looks to Casey for whether to wear a coat or boots – she knows he will find the car no matter where we are. He watches her in restaurants – she follows him in crowds, usually holding hands. If they are some place that isn’t familiar to either of them, they stick together and stay close to someone they trust. The trails we were on last week were completely unfamiliar to all of us, but Rob took off. He is confident in the woods. (I don’t know what he would do if he didn’t have a trail to follow and I hope I never find out!)

She feels safe if she is following him. I find it so amazing that, despite their autism, they lean on each other just like typical siblings do. They understand the talents that each of them have and trust those talents to keep them safe. Again, I’m not sure what either of them would do if they found themselves in an unfamiliar place with strangers. That thought is enough to keep me awake at night and to say a prayer that never happens.

When Rob knows he is going somewhere different, he asks for Mandy or Casey. He doesn’t like to go strange places without one of them. It seems if he can go on an outing with their day hab, he will only go if Casey is going or a staff member that he trusts. If not, he will choose to stay at the hab center.

Casey will go anywhere with anyone (and this scares me to death! Of the two, I think she is more likely to walk off with a stranger) and she loves new places. This is where their personalities define them. He is more cautious about people – he pays more attention to them. She ignores most people. She doesn’t care what others think while he worries constantly about that.

His anxiety causes problems for him, while her need for structure can get her upset. This is just them – it isn’t because of autism. Maybe she shares her love of schedules with Mandy. Maybe Rob is a leader at times because he is like me. Many of their “quirks” can be seen in other family members. Not everything in their lives is autism and I wish more people understood that.

They lean on each other, and Mandy and Cory, because that’s what siblings do. It isn’t their autism – it’s the love they have for each other. They know the strengths that the other has and use those strengths. They understand when the other is nervous or scared and try to help. Casey is especially worried when Rob is sick or hurt. She has to constantly check on him and will put band aids on him whether he wants them or not. (even if he doesn’t, he lets her do it, then takes it off when she isn’t looking.)

I wish that every family had siblings that leaned on each other like they do. I don’t know what I would do without my brother to lean on and I’m sure Mandy feels the same about Casey and Rob. Theirs may not be the usual relationship, but that doesn’t make it any less special. I know it’s hard for siblings when one has special needs. I know many families get torn apart by it. My hope is that if that does happen, eventually, the relationship can be repaired. Sadly, some people just cannot handle being different and the stress that comes with that.

Casey is more head-strong than Rob. I just asked her why she follows Rob in the woods. Her reply? “Bigger.” 🙂 Yep – he is bigger. Maybe she thinks he can save her from animals. Maybe she knows he will break branches that might hit her. Maybe she knows that he will find the fastest way back to the car so they can have a snack. 🙂 Either way, she trusts that he will take care of her.

I just love watching their relationship as it grows. As a mom, watching my kids enjoy, support and love each other is the best thing I could ask for. Don’t give up if your children aren’t to this point, yet. They have plenty of time to learn to trust and have fun together!

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Autism and Prom – Deep Thoughts and Fun

Autism and Prom - Deep Thoughts and Fun

Casey looks forward to Prom night for weeks. This year, she went dress shopping with Mandy, Grandma Rose and me. She said she wanted a purple dress for weeks and I hoped we could find one that she liked. After several stores, she grabbed a navy blue dress with a yellow jacket. I reminded her about wanting a purple one – I just had a feeling she would get home and ask for a purple dress. (You all know how her autism causes her to stick with original plans! 🙂 ) She insisted and we found yellow shoes to go with it. She was thrilled all the way home.

Rob said “yes, please, no fanks” to a new shirt. I would love to see him really dress up, but that’s not something he could handle right now. So, I let him wear black windpants and a new shirt – with sleeves. He is willing to put the shirt on (I buy a t-shirt type shirt – nothing too uncomfortable) for pictures, but once he decides he has posed for enough (and that’s always before Casey has decided enough have been taken! 🙂 ) he wants his old shirt on. This year, I had Mandy put it in her car – just in case.

Mandy helped Casey with hair and make-up. Casey is so serious for this – everything has to be done that was done the year before. Rob wants to be left alone until he has to put his shirt on. We took so many pictures and he is smiling in many of them. Mandy made him laugh – he can never get enough of her. 🙂

We danced for a long while. Rob joined us a few times, but the twirling lights are just too tempting. He loves to lay on his back on the bleachers and just watch the lights. Casey has finally stopped her running/leaping and if she isn’t dancing with Mandy or me, she just stands and watches the other dancers. Mandy needed to leave after an hour or so and I sat down to watch, too.

It had been a long day and I was tired. I was happy to be there – happy that the kids were having fun – happy to be dressed up with all of the kids. But – I was sad, too. It’s hard to watch a big group of people having fun and dancing with their friends when mine choose to stay on the edges. I know Rob doesn’t want to be in the group – but maybe he does want to fist bump a friend like he saw others doing. Maybe he sits on the bleachers because dancing with his mom or sisters is not “cool.” Maybe he would like to line dance with the guys he knows that were there. Maybe… maybe… maybe….

Casey stays near the edge of the dancers and never takes her eyes off of them. I wonder what she is thinking. Is she wishing she was dancing with a guy? (Tho, based on what happened the last time a guy tried to get her to dance, I’m going to say that’s probably a no! 🙂 ) Is she wondering how to join the group? Is she trying to learn the dances? Does she feel left out? I don’t know how to help her. No one else there has their mom dancing with them.

Those that need help have staff with them. (I saw so many amazing staff people that night – thank you for everything you do!! It’s obvious that they love what they do!) They don’t have mom – and I’m sure being with a pretty staff person is much cooler than being with mom! But maybe Casey and Rob don’t even think about things like that. And I feel even more tired. I’m ready to go home and be done with the thoughts.

Then Rob jumps up and comes to me. He leans close and grabs my phone, finds the camera and makes faces for selfies with mom. Though he isn’t laughing in the pictures, he giggles every time he sees the goofy faces he makes. And I know that if he was feeling like being with mom isn’t cool, he wouldn’t be hugging me to do more pictures. 🙂

I wish autism wasn’t so confusing. I wish I knew what they were thinking and feeling. I wish I didn’t have deep thoughts during a fun time. I wish I wasn’t so tired at times. I wish …. I wish… I wish.

We all have those wishes, don’t we? Maybe it’s wishing for a friend for your child. Or for your child to try a new food. Or for an awesome teacher for your child. Or for a job your child enjoys. Or for the money to try a new therapy. And the list goes on and on.

I suppose it’s good that we have those wishes. As long as we can dream for our kids, we will keep reaching for the stars with them, for them. We will find the strength to fight for what they need – just so they might reach those dreams. Once we stop wishing, even for our own lives, we stop growing. We stay in the same spot. No one can be happy without those wishes and dreams.

So please, keep those dreams for your child. You have no idea what the future may hold!

And – Casey and Rob both said the prom was fun. 🙂

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Autism and the Questions I Never Asked

First, I have to say, the above picture is one of my absolute favorites of the three kids together. It has been hanging in my kitchen or dining room since it was taken – 14 years ago! I realize you can’t see the kids’ faces, but I just love that they are walking hand in hand and completely in step with each other on a beach that they love going to. Autism isn’t obvious, unless you know the kids.

That really is a snapshot of how they grew up. Mandy was in the middle and guiding Casey and Rob towards fun and safety. She never seemed to notice how different they were from her friends’ siblings or that her life was very different in ways, because of autism. The kids weren’t always in such perfect step together, but they were always together.

I am always bragging to people at how amazing Mandy and Cory are to Casey and Rob. There are so many siblings that simply have nothing to do with the person with autism and I thank God every day that my kids are close. I just can’t imagine the pain a parent would feel knowing that autism kept the family from being close. Mandy will say how great her childhood was and, in many ways, I think it was. But – there are questions I never asked her, because I am not sure I want to hear the answers.

Like – did she ever notice that we didn’t go many places as a whole family? Did it bother her that many times, she only had one parent at her school events? (yes, I know many children have only one parent at events, but I’m thinking just of her. 🙂 )

Did she ever notice that so often when we played Barbies or horses or Power Rangers that I never got too far away from the top of the stairs so I could hear what was going on downstairs? Did she notice that I was distracted as we played some days?

Did she feel left out when Casey and Rob went to therapies? I know she didn’t like that they had horse therapy, at first, because she so loved horses and she wanted to ride, too. When she got a little older, she volunteered with the riding club, but I still regret that she didn’t get to ride when she was the one who loved horses so much.

Did she get tired of sharing a room with a sister who had meltdowns often? or who couldn’t sleep many nights?

I know there were times she was furious with Casey and Rob. There were times they took something precious to her and broke it or just got on her nerves. But did she resent the way I handled those situations? I could tell Casey and Rob not to touch things that weren’t theirs, but in reality, their impulsiveness overrode any words I could say. I never felt I handled those times right – I tried, but I don’t think she truly understood that I knew how upset she was – there was just little I could do, except cry and hope that she didn’t grow up to hate her brother and sister.

Did she notice how many times Casey and Rob’s needs had to come before hers? When they were little, I hoped every day that she would never feel like she wasn’t just as important as the other kids, but it was (and still is, at times) a worry I can’t shake.

Did she have plenty of time to just be a kid? And not have to help keep an eye on Casey and Rob as we played outside or ventured to a store? Did she have enough freedom to just be her – Mandy – and not their sister?

Did I make sure they all followed the same rules? I hope so – I tried – but I wonder, at times, if I was more lenient on Rob, because he was the baby, not so much because he had autism. I suppose that’s something every parent worries about, but when there is a special needs sibling or two tossed in, it’s even harder.

It seemed some days that my entire day was dealing with autism in one way or another. Those nights, I would fall into bed and feel so guilty that Mandy didn’t get the few minutes of attention I wanted to give her. (Autism mom/dad guilt just sucks, doesn’t it?) I hated that I couldn’t spend the whole afternoon playing games with her without constant interruptions from autism.

Did she resent it when I asked her to watch the movie Casey or Rob chose, even though it was her turn? It didn’t happen often, but some nights, I just couldn’t deal with the thought of another meltdown from Casey because her movie wasn’t on when she got out of the bath. Luckily, Mandy and Rob tended to be obsessed with the same movies (except Willy Wonka – she never got into that one like he did!) – like Wizard of Oz and the Power Rangers – at the same time. And even luckier, Rob did whatever Mandy wanted so he was happy with anything she chose.

Did she get tired of our routines? Or did she like that she always knew what was going to happen?

I know every parent has questions like this, whether there are special needs family members or not. This is just something I’ve been thinking about the last few days – I’m not sure why – maybe because I was looking at pictures from when they were younger and thinking about how many times Mandy had to jump in and help with Rob when Casey was having a meltdown. Or look for Rob when he climbed somewhere and we couldn’t find him. And those thoughts led to the questions.

Casey, Mandy, Cory and Rob are close now. While Casey loves Mandy and Cory, Rob takes that love to an adoration. He is still the same little boy who would follow his sister wherever she wanted to go (and I have pictures to prove it!) and now he follows Cory that same way. Now, I know she doesn’t resent her siblings, but when they were little? I’m sure there were times she hated autism – same as I did. I am sure she never hated Casey or Rob – just the actions that were caused by the autism.

I wish that every person with autism had a Mandy and a Cory in their lives – that every family could be as close as ours. Despite my guilt at not always being the mom I wanted to be for Mandy, I know how lucky we are to have each other.

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Autism Moms and the Need to Just Chill Out

Autism Moms and the Need to Chill Out

As soon as Mandy sees this post, I can imagine the look on her face – she told me to do just chill out several times today.  I know I need to do that, but you know how hard it is!

She called me this morning and asked if I wanted to bring Casey and Rob to a cookout at her in-laws camp site and then take a long kayak trip.  Oh man!  I haven’t been on the river yet this year and I wanted to go so badly, but the autism mom kicked in.  Who will be there?  Do they know about autism?  What if Rob gets loud?   That was the first time she told me to chill out.  “we got it covered, mom.”

Okay, she thinks no one will be bothered by the loudness, what about taking them on an hour long trip?   We hadn’t tried that, yet – only playing by the camp site.  “I got it figured out, mom,” she said.  Her plan was to tie their kayaks or tubes to ours.  And I wanted to go so much.  I still wasn’t sure about Rob, but I could just take him home if he got anxious.  So I asked them if they wanted to go and Rob was so excited he changed into his swimming clothes right then.  (We weren’t leaving for a few hours!)  I was amazed, as he hates to wear shorts.

As I was driving, I thought about how many times I wanted to do something and really wasn’t sure about the kids so I backed out.  It’s just easier to stay at times – you all know that.  And, really, there are things that I know one or the other won’t enjoy and I either take just one or we stay home.  I did that yesterday – we were all invited to a graduation party and I knew Casey wanted to go.  I thought about taking Rob, just for a few minutes, but he said “No, fanks!” as soon as I mentioned it.  He went to Grandma and Grandpa’s house and Casey went with me.

So we get to the camper and I’m getting nervous.  Rob started singing his anxious song, but he was doing it quietly and only once.  He wanted to see the water, so we sat on a bench where he could watch the river flow by and he got quiet.  He asked for the boat once or twice, but I told him we were going to eat first and he was okay with that.  Casey just watched everything and rocked a little.

When it was time to eat, I asked Casey to wait for Mandy to get her plate and again, I got the “chill out, mom” look from Mandy.  So Casey fixed her own plate (she’s perfectly fine doing that – I was just trying to keep her out of everyone’s way – course, no one was paying attention anyway – they were fixing their own plates!)  They both ate (I was impressed – you can never be sure Rob will eat – especially when he is excited about something).

As soon as we finished, Rob started getting wiggly.  He was ready to get in the boat.  Mandy and Cory got the kayaks ready while I wondered if Rob would actually step down into it.  The water was a little higher than when we were there before and he refuses to get his shoes wet.  Casey got into hers first – squealing “help” a few times – she thought we were going to send her down the river alone.  She calmed down as soon as she saw me get into my kayak and the rope holding us together.

I got us out of the way and turned to see if Rob would get in.  And was amazed when he stepped right in and settled down with his paddle.  Soon, he and Mandy were beside Casey and I and we were off.  We had decided to take them to the end of the campground and see how they were doing.  If either was anxious, it would be easy to get out there.  They both wanted to keep going.  Rob looked half-asleep – he was so relaxed.  He even splashed his hands in the water!

Now that we are home, Casey said long trips are fun, but about halfway through the trip, I had serious doubts about her.  She kept taking big breaths and sighing.  But she never got upset.  She didn’t relax as much as he did, but she seemed okay.

I looked around at the beautiful blue sky, the green trees along the river and the kids doing something together and wondered why I ever thought about not coming.  We would have missed spending a gorgeous day outside with family and friends.  It’s just that autism mom way of thinking.  And I know we all need to just chill out and go places.

Trust me, here – I am not saying you should take your child everywhere.  You know there are places that your children won’t enjoy – just like I knew Rob wouldn’t like the graduation party.  But we owe it to our kids to try new things!  We owe it to them to show them as much of the world as we can.  It may not be easy, but life rarely is – even without autism.

My advice is to try not to be scared at the thought of trying new things with your child.  It’s not that I’m afraid of trying new things – more that I overthink what might happen and worry about ruining other people’s good times.  Like today – if Rob had gotten anxious, we would have just come home.  It wouldn’t have been a big deal as Casey could have stayed with Mandy and Cory.  But I let autism into my head and it’s hard to get out sometimes.

Autism dictates so much of our lives.  It’s a simple fact that we will never be able to change.  What we can change is our reaction to it.  Even typical people have issues sometimes, so why do we worry so much about taking our children with autism into the world?  Take whatever you think might help and go.  Stay a minute, stay an hour – whatever you and your child can handle.  Only by experiencing the world can your child want to more a part of it.  If he/she has no idea kayaking exists, how would you know if they enjoy it?  You might have a star ball player or expert piano player – but only if you let them try.

Take a deep breath, chill out and go!  It won’t always work out, but at least you tried!

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Autism Siblings – Unwavering, Unconditional Love and Laughter

Autism Siblings

I’m sure I’ve mentioned before that one of my biggest worries with having two kids with autism was my “typical” daughter.  I wanted Mandy to know that she was just as special and as loved as Casey and Rob.  It’s not easy to do that and I often felt that I was failing them all.

Casey was almost 3 when Mandy was born and we were surprised that she took an immediate interest in her little sister.  She loved watching Mandy sleep and to put her binky back in her mouth when she lost it.  When Mandy was old enough to lay on the floor under a mobile, Casey was often right beside her watching the same toy.  When Mandy cooed, Casey giggled.  When I talked to Casey, I might as well have been talking to the wall.  Mandy had an immediate effect on Casey.

Casey got her official diagnosis of autism two weeks before Rob was born.  Her neurologist told me that since I had one child with autism, I should watch for signs from either of the other kids.  Mandy was talking and loved being around people, but it was possible that she would regress at any time.  I didn’t even think about Rob having autism at that point – I was too worried about getting Casey the help she needed and watching Mandy for signs she was losing skills.

When Mandy turned 3, I was sure she was fine.  She talked non-stop and enjoyed pretending and playing with anyone.   She talked to Casey, even if she didn’t get a response, and she played odd games with Casey, just to hear her giggle.  One of their favorites was to toss toys over their shoulders until their closet was empty – laughing the whole time.  Sitting in the doorway watching them was so much fun and gave me hope that Casey would ok.

Rob followed Mandy from the day he was born.  Because they were so close in age, and she was small for her age, they were often mistaken for twins.  She talked for him, so he rarely had to make an effort to communicate.  He also had constant ear infections, so when he didn’t say much, our doctors weren’t too concerned.

When I tried to teach Casey or Rob skills that Mandy learned easily, she jumped in to make it more fun.  She didn’t know she was helping – only that she was “playing” with her brother and sister.  Unfortunately, there were many times that Mandy jumped in to help when Casey was having a meltdown and Rob was anxious.  I hated depending on her – she was just a little girl!

I hated that when she wanted to play with Barbies or horses, I had to sit at the top of the steps and play so I could hear what was happening downstairs.  I hated that Rob loved her horses as much as she did and was likely to take them while she wasn’t looking.  I hated that Casey loved chewing Barbie feet and Mandy would be furious their shoes wouldn’t fit anymore.

But as mad as Mandy would get, she was the first one to jump when Casey or Rob needed help.  She didn’t seem to notice that they weren’t like her friends’ siblings.  I worried that her friends would be mean to the kids, but they were accepted.  I think it helped that Mandy went to our local elementary school and Casey and Rob went to another one.  This gave Mandy time to grow and learn self-confidence  before she had to really deal with the cruelty of other kids towards her siblings.

I have often seen posts that say if you want to know how to treat someone with autism, you should just look to their siblings.  There is so much truth in that statement.  I never told Mandy she had to always be nice to her siblings – what siblings never fight?  But – while she may have gotten mad and yelled at Casey or Rob, no one else better even think about it.   She is a firm believer that only she can do that!

She knows just what buttons to push to get reactions from Casey and Rob and still pushes those buttons at time, just so they can share laughs.  They may not share fun like typical siblings, but the love and laughs are the same.  They tease each other (anyone who says people with autism don’t have a sense of humor haven’t looked closely enough!) every chance they get.

Mandy and Cory lived in Texas for several years and those were tough years for Rob.  Casey would look at the calendar and know when they were coming home for a visit, but Rob couldn’t understand time  or distances.  He just wanted Mandy and Cory to be home.  Now that they live here, a trip to their house is better than a stop at McDonalds!

I know not all siblings of people with autism are as close as mine are.  I wish they could be.  I wish I knew the magic answer.  The best advice I can give is always remember that each child has their own special needs.  Your typical child needs to have time just with you – no matter what you need to do to give it to them.  Spend the other kids to bed earlier.  I used to send Casey and Rob to school and take Mandy shopping and out for lunch once in a while.  When Mandy had special events at school, I was there and I left Casey and Rob with grandma and grandpa so I would be totally there for her.

Rob still follows Mandy around – just like in the above the picture.  Whenever Mandy practiced her trumpet, Rob pulled my old guitar out and followed her.  If she went in the pool, he was right behind her.  And he still thinks she has the best ideas.  He leans on her for comfort.  Casey does the same but she expects Mandy to take her everywhere she wants to go.  They both know they can twist Mandy around their fingers – but she doesn’t always do what they want.  Sometimes, she is mean and says no – and Casey will tell on her as soon as she can.

Close – knit siblings are still siblings, after all!