Tag: autism families

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Autism – All in Good Time

Autism - All in Good Time

When you look at the picture of the birdhouse with this post, I’m sure you probably don’t think much about it. Maybe that someone likes pink and purple. But to me, it’s a reminder. A reminder that with autism, as most things in life, it’s all in good time. It’s a waiting game. And for someone who isn’t always that patient, I need that reminder.

Rob painted this birdhouse at his day program last week. Why do I think it’s reminder?

Because – I’ve had those birdhouses for him to paint for a few years and he always said “yes, please, no fanks” when I asked if he wanted to paint them. So, last week, I was cleaning out craft supplies and took a bunch of stuff to the day program for them to use. And he painted it a day or two later.

I couldn’t believe it when he brought it home. I asked him why he wouldn’t paint it with me, but he looked at me like I was crazy. I have a huge tub of paints. I offer him things to paint often as he does enjoy it. And he always said no.

Mandy laughed at me when I commented that I just wanted to know “Why?” Like we can ever know why. And it really doesn’t matter. He said it was fun to paint (and it matches the pumpkin he painted) and that’s all that really matters.

Yesterday, I saw the birdhouse again and it hit me that it is a good reminder to let things happen when they need to. Maybe Rob just felt like painting it the other day because they were painting pumpkins. Maybe he likes their shade of purple better than mine. Maybe he likes their paint brushes. Maybe the moon was in the right cycle and the timing was right. Who knows?

Autism is so much that way. We want to see progress. We want to see that our kids are learning and taking steps forward. And we want to see it NOW! No one wants to wait to see what their child learns next week. We want to know this minute. Autism doesn’t work that way.

For our families, so many things need to be lined up perfectly to see those small steps forward. Sensory issues can’t be causing stress. Anxiety needs to be controlled. The right teacher, the right way to explain things, a child ready to learn. This isn’t just with autism, either. Every child, every person, needs to do things in their own time to their own ability. It’s a lesson we all need to remember. Life is already too fast. Slow down.

Progress will come. Not as quickly as we want, but it will happen. You need to have patience and keep your faith. Keep reaching for the stars. Keep hoping and dreaming.

As for me, I’ll be looking at a little pink and purple birdhouse and reminding myself to slow down and enjoy the little things. Everything will happen in it’s own good time.

If you would like to read more about our adventures in autism, please check out our book – Autism, Apples and Kool-Aid on Amazon.

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Slow Down and Really Look

I needed this reminder. The last several weeks have been so crazy busy that I feel like I’m just going from one thing to another without really paying attention to what’s going on around me. Don’t get me wrong – we are having lots of fun together and have lots of adventures planned, but something happened yesterday to remind me to really look around.

Our autism support group is donating a Christmas tree to be auctioned off to benefit the Firefighter’s Toy Chest in our community. Yesterday, several families met so their kids could decorate an ornament however they wanted. It was a beautiful fall day and Casey and Rob were so excited to go to the playground for a while.

I, on the other hand, was not feeling great and really wanted to just stay home. I couldn’t disappoint them, though, and I knew we wouldn’t be gone long.

Rob and Casey had already decorated their ornaments, so they headed straight to the playground. He jumped on a swing, but after a little while, Casey came back. She sat on a bench and just watched the kids. She had the most beautiful, peaceful smile on her face and it was obvious she was enjoying yourself.

As we were cleaning up, another mom, Keisha, asked if Casey was always smiling. I laughed and said no – remembering the night before when Casey was not pleased that I wouldn’t write Christmas activities on her calendar, yet.

Keisha said that she and her husband had talked about Casey – that whenever they see her she has the most beautiful smile and always seems so happy. I stopped cleaning up and looked over at Casey – really looked at her – and saw how happy she was to be at the playground and outside. Her eyes were twinkling, her feet were bouncing and she was smiling bright enough to rival the sun.

It hit me then. I see her smile often, but sometimes, I am so busy trying to think ahead of them that I don’t really notice it. I don’t stop and appreciate how happy she gets over the smallest things. She doesn’t need much to make her happy – any trip, anywhere is enough to bring a smile to her face and twinkles in her eyes. Going to Grandma and Grandpa’s causes giggles all the way to their house.

Rob’s smiles are just as magical. He doesn’t show his excitement as much as she does, though. He tends to wait and make sure that wherever we are going is worth the trip. He is such a homebody. He enjoys activities, but only with people he feels safe with and preferably no crowds.

I wish we could all be more like them. To be happy with small things. I tend to be – a pretty flower or a text from a friend always makes me happy. But I know I need to slow down more and really look around. I need to notice the miracles around me every day, like her smile and his giggles.

Life with autism isn’t easy. It’s hard to slow down, sometimes, but I’m urging you to do just that. Sit on your porch and look at the fall leaves. Listen to some music and just sit. If we don’t slow down, we’ll miss the smiles that everyone else sees!

If you want to read more about our lives with autism, check out our new book! I hope it makes you laugh and gives you hope! Here’s the link Autism, Apples & Kool-Aid.

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Autism and the Wild and Wonderful Holiday Season

Autism and the Wild and Wonderful Holiday Season

The holiday season is full of so many fun and amazing events, but for those of us with a special needs family member, it might not be the kind of excitement you think of. It can be a painful, stressful and scary time for those with sensory needs or the need to keep a set routine. Even school schedules change during this month! And, as we all know, if autism makes life difficult for one, it affects every one in the family.

The holiday season is the time to relax your standards and focus on having fun with your child – whatever that fun might be. Whether you are able to visit Christmas light displays or special holiday events at your local library is something only you will know. I would also encourage you to try new things, but to be okay if it doesn’t work out. Stop in a party for 5 minutes. Go to a candle lighting. Go to a parade. The thing is – you never know when your child will surprise you with a new skill or ability to go somewhere.

If you know your child can’t handle the change in routine or the noise of going somewhere, plan special things at home. Make a mess making cookies or have a family movie night. All of my kids used to love bringing sleeping bags and pillows into the living room and watching a movie together. Each of them got to request a special snack for the movie and they slept in the living room together when the movie was over.

Try to create a special ornament. If you aren’t crafty, or your child has fine motor troubles, look for a craft kit that has everything you need. There are so many options of ones that are foams pieces that are stickers. All you have to do is peel the back and let your child create special gifts for everyone. These are pretty reasonably priced, too! Or you can mix up salt dough and let your child squeeze and mold whatever they like. Both of these activities offer occupational therapy benefits, too!

Make a paper chain to help your child understand how long it will be before Santa comes. Or how long he/she will be out of school. Again, let your child help! I know it’s easier to do it yourself, but your child needs to try – and needs you to encourage him/her that they can do anything they want. Some stores sell paper strips that have a sticky spot on one end to make the loops.

The whole point is to make your holiday a happy one – one that is perfect for your family. It may not look like the “picture perfect” one that Hallmark promotes, but that doesn’t mean it won’t be amazing. Instead of thinking about all you might be missing, think of what you may be missing that you didn’t want to do anyway. Business party? sorry – no one to stay with my child with autism. Extended family party (you know – the ones where you only see these people at Christmas) – sorry, it’s too loud for my little one. (And – you also get to avoid those family members who want to tell you everything you are doing wrong for your child!)

While a lot of what I’m sharing here is things to do at home, I really do encourage you to take your child new places. Trust me – I know the stares you may get are hard to handle, but really – what does it matter what those people think? I’m sure every single person who makes a negative comment about your child has something about them that you could comment on. It takes a while, but after so many years, I honestly couldn’t care less about what people are thinking or saying. It’s their problem, not mine. And if I’m trying to help Casey or Rob, I don’t let anyone distract me from that.

If you are new to the autism journey, you may feel that you will never be able to handle the stares or comments, but you will. You’ll develop a thick skin and a look that could kill a snack. Go out and enjoy everything the holiday season has to offer you and your child. Plan for short trips and stay as long as you are all happy and comfortable! You can do it and your child will learn and adapt. Sometimes, it takes years, sometimes, you will be surprised. Don’t let autism rob you of a wonderful Christmas season!

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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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Autism and Self Care

Autism and Self – Care

Those of you who read last week’s post know what the last month or so has been like for our family. And in the middle of our grief, self-care has become even more important – and the first thing that I stop doing.

When you have a child with special needs, that child (or children!) can become the only thing you think about. Your life revolves around what you want for that child and, sometimes, even your other children suffer for that. While I don’t think I ever focused so much on Casey and Rob that Mandy suffered, I know there were times that she didn’t get the attention she deserved. I know even more that I didn’t focus on myself enough at times and I burned out. Luckily, my family stepped in to take over for a few hours and let me regroup and recharge.

The thing is, self-care looks different for everyone. For some people, being with a lot of people helps. For others, large groups are too tiring (that’s me!). You will need to find your own way to take care of yourself.

I’m struggling to make decisions and I know it’s because of my grief. I know I need to make choices soon and my head is too fuzzy to think which choice would be best for us. The gray, rainy days are definitely not helping me, either. I need to start looking for a new job, soon, but the thought of trying to make arrangements for Casey and Rob every day again is just too much for me to deal with right now. I can’t even think what I should do. So, I’m going to take a deep breath and focus just on the next hour. Write this, take a shower, make lunch.

And then I’ll figure out what to do next. I have a list of things that need done around the house, but I’m going to focus on me and what I need right now. I know it sounds selfish, but I also know it’s what is best for me – and that means for Casey and Rob, too. I can’t be the mom they need if I’m falling apart – so me, first.

Self-care for me today might be finishing a puzzle I’ve been working on. Maybe taking a nap. Or making a Christmas wreath. Maybe I’ll finally start the book that has been sitting here for weeks. Maybe I’ll put a Christmas tree up and enjoy the bright colors. Or maybe I’ll call Tracie and talk for a few hours. All of these sound good to me right now. The best thing is, I don’t have to decide right now. My motto lately has been if I don’t need a decision this second, it can wait. I don’t care about most things right now – only my family.

For you, self care can be anything that makes you feel calm and happy. Exercising is a good one (I enjoy that – it’s great for stress relief, too!). Sleep is another. Maybe it’s a hobby you haven’t made time to enjoy in a while. Maybe it’s finding someone to watch your child while you soak in a hot bath or enjoy some online shopping. You know what makes you happy. The problem is – you let everyone else be more important than you.

And that’s going to cause problems. I guarantee you will crash at some point. I don’t know how or when, but you will. It won’t be pretty – and it can be avoided if you take care of yourself now! Before it’s too late. Please, let someone else handle things for a few minutes and do something you love. It’s not just important for you – it’s desperately important for your child, too. Like I always share – you can’t be what your child needs if you burnout.

It’s a hard lesson to learn and one I still struggle with at times. It’s hard to be selfish about doing what you love when so many other things are pulling at you. But, in this case, being selfish is what you need to be. It won’t matter tomorrow if the house is dusty or the dishes still need washed. It will matter if you are crying in bed and unable to get up because you are just done.

Focus on you – just for a little while. I promise you – life will be easier if you do.

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Autism and Tough Choices

Autism and Tough Choices

You know that I’m a big supporter of letting people with autism try new things. Whatever Casey and Rob want to try, I do my best to find ways to support and encourage them. However, there are times that I have to make tough choices – and they usually break my heart. I hate mom guilt.

Yesterday was my niece, Anna’s, graduation party. It was held at a place Rob was somewhat familiar with, but there was going to be a big crowd of people he didn’t know. Plus, the weather here has been unstable, to say the least, for the last week. Plus, it was hot and humid. Casey couldn’t wait to go – she had gotten a new shirt, just for the party. I knew Rob would not enjoy himself. I knew it. While I’m all for pushing them to try things, I also don’t set them up to fail. He may have been fine, as I wouldn’t have been there long. But, my gut told me I was asking for trouble. I knew his anxiety would go sky high as soon as he saw so many strangers.

The problem was – he heard Casey talking about Anna and Uncle Jeff and Grandma Rose and Grandpa Mack. So he started asking, too. I tried to explain to him that the party wasn’t at Uncle Jeff’s house or Grandma’s house. But he kept asking. And I felt like crying. I knew he wouldn’t enjoy it – but how could I explain that to him? When I’m always telling them both they can do anything if they would just try?

Enter – Mom Guilt.

Because, the reality is…. I knew it wouldn’t go well. And I just didn’t want to have to handle it.

Not that he would have a meltdown or run away. He would just get loud… louder…. louder…. maybe scream coffee cup or one of his other phrases. I knew Anna would be fine if he did – she’s an amazing young woman. I knew my brother wouldn’t care. But – sometimes… I just don’t want to be put in that position. So, mom guilt set in. I went back and forth arguing with myself.

In the end, I told Rob it was hot and it would be crowded. He asked for Uncle Jeff. I told him he wouldn’t be able to be in the house by himself – he would have to stay outside with me. He asked for Anna. I told him he would have to put a good shirt on. He asked for Grandpa Mack.

I didn’t want him to think I just didn’t want to take him. I’m proud of him! But – I also knew it wasn’t going to be fun for him. This is the hardest part of being an autism mom – the lack of communication. Did he understand that I knew he wouldn’t enjoy it or did he think Casey was more special than he was? So I cried some more.

In the end, I pulled out the big guns. I offered him a deck of cards to rip up and a Big Mac and fries. He stayed home. He was happier there. But I was almost in tears as I pulled out of the driveway. I never want my kids to think they aren’t welcome to go anywhere with me. I wanted him to understand that I knew he wouldn’t enjoy it and that’s why I was making other arrangements for him. But still….. autism isn’t easy.

It was good to see everyone at the party, but I couldn’t really relax. Even though I knew Rob was happily ripping up cards and waiting for his McDonald’s. Casey happily filled her plate with delicious food, watched kids for a few minutes and she was ready to go. We got Rob his supper and went home.

He seemed ok – but it still nags at me. Does he really understand that I would have loved to take him if I thought any part of it would be an enjoyment to him? If it hadn’t been so hot – if the weather didn’t already have him anxious…. the list goes on. The reality is, I know I did the right thing. But it still sucks at times. Mom guilt. Don’t you love it?

And – only another autism parent really gets how hard it is sometimes. People understand it’s hard. The people closest to us understand a little more as I’ve cried on their shoulders. But – really, only another autism parent truly understands that pain of not knowing if their child truly understands you are making a tough choice that is better for them. Communication… you don’t think about it much, until you don’t have it.

So – I still stand by my advice to always let your child try – as long as there is a possibility of success. Yesterday, Rob had too many things stacked against him. He may have made it through the party without any yelling, but he wouldn’t have liked it. He would have been stressed and anxious – and we would have paid the price when we got home.

So – let them try. But follow your gut instincts. And – don’t be afraid to just say your children are staying home because you need a break. It’s allowed. And it’s important.

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Autism and Family Fun

Autism and Family Fun

Today has been a good day. It’s one of those days that, when Casey and Rob were little, I never dreamed would happen. These days do happen more often now and I thank God for that as I’m so grateful to see Casey, Mandy and Rob having fun together, with autism present, but not the main thing.

Mandy and I decided to take Casey and Rob swimming today. The pool is small, but close to our house and Casey and Rob both enjoy it. (Honestly, I think he does more than her. She likes to go anywhere – and instead of focusing on how great the water felt, she was wondering what snacks we brought. 🙂 ) He wants to run and jump in as soon as we get there, but I make him walk down the steps so he doesn’t land on anyone. 🙂

He got almost to the bottom of the steps and fell in the pool like the Lipton tea commercials – the person falls flat in the water? And then he was off to “his” part of the pool. He had his ball and an empty area – he was in heaven. He was sitting under water and bouncing up and down as high as he could go. Water is amazing to him – the pressure calms him down and he loves the feel of bouncing. Water play is sensory heaven to him.

Mandy was watching them while I went to get more sun screen. When I came back, I saw a funny look on Rob’s face. He looked at me, then back to the other side of the pool and I saw why he looked odd. His aquatic therapist, Erin, was there! He was amazed that she was at that pool and not in “her” pool at the hospital. Even after we got home, he was giggling about Erin being at the pool. And reminding me that tomorrow is Erin day and he needs his swimming stuff in the morning.

One of the best parts of the day was that Rob wanted to play catch with me! I’m not sure when we played the last time – and I know it wasn’t for more than an hour like today! Every time I thought he was done, he asked for more. I loved it! And then, to make it even better – Casey played catch with him! They only played a few minutes, but again, I don’t know when the last time they did an activity like that together was. (They do things together, but often, they are together, but not necessarily interacting with each other.) I looked at Mandy and told her that no one else in the pool realized they were in the presence of a miracle. 🙂

I share this with you to remind you again that you have to keep trying to take your child to new places. Trust me – I know it’s easier to stay home when there may be a meltdown, but your child will never learn to adjust and cope with their sensory needs if you don’t give them a chance. I’m sure a few of you are thinking that I have no idea what your child is like and you are right. I can only tell you that Casey and Rob both had major issues with stores and restaurants when they were younger (and still do, at times!) but they have learned how to cope.

They only learned that by trying and failing and trying again. We had some ugly times in stores. We got some terrible looks and even worse comments. And, I’ll admit, there were times I didn’t try, simply because I was tired and couldn’t deal with it. There are still times when I know Casey or Rob is having a rough day that we avoid going out. It’s just not worth it. If your child is already stressed, trying something new is rarely a good idea. And don’t try when you are tired or stressed.

But – try again. And again. You will have bad times. We did. You will gets mean looks and comments. We did. But, Casey and Rob are doing amazing now because we did keep trying. We celebrated the good trips and tried to forget the others. It’s not easy. Autism is not easy, Being a parent is not easy.

Start small. Maybe a five minute trip into a store to get something your child loves. Build up into longer trips. Celebrate the small victories and plan your next trip. You can do it! Your child needs you to do it!

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Autism and Constant Supervision

Autism and Constant Supervision

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

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

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

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

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

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

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

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

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

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

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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 and the Little Things

Autism and the Little Things

With all the craziness still happening in the world, I thought I would share some bright spots from our week – and show the autism doesn’t always win!

1. Rob asked for a haircut! Yes – you read that right! When he was small, hair cuts were a nightmare for him and me and usually involved me holding him tight against me as my mom used the scissors. By the time it was over, he was screaming, I was crying and we were both exhausted. Now, I know it was all sensory but, at the time, it didn’t really matter.

He has let me use clippers on his hair for years (I never have figured out why the scissors were more terrifying than the buzzing clippers) but today was the first time he asked for one. Then, he stuck his chin out and made me understand he wanted a shave, too! I’m still amazed! 🙂

2. Another Rob thing… Trimming his nails. Again, it used to be like trimming nails on an octopus. He hated every single second of it and fought like a wild cat. He’s been okay with having his nails cut for a while now, but he really doesn’t like it.

Tonight, as I cut them, he inspected each nail and if I didn’t cut it enough to suit him, he folded all the other fingers and stuck the one that needed done again in the clippers. 🙂

3. Casey roasted her own marshmallows! While she loves them, she has always been scared to be close to the fire pit. Tonight, she did it! Very carefully, but with a huge grin on her face. It was so exciting to see! 🙂

4. We went for our walk one day last week. When we got home, I asked Casey to get the mail for me. Our mailbox is beside the street and this is always been something I never dared to have her do.

She was so proud to open the mailbox and bring the mail to me. She even waited in the yard for a car to pass before she looked in the box! 🙂

5. Rob swept his room! He has before, but it’s often a quick brush and not really done well. This time, he moved his shoes, containers of blocks and the fan. He even swept behind his recliner and door. He doesn’t like to use the sweeper, but he’s getting awesome with the broom! 🙂

6. There are signs along the path we walk – little things to build conversation between families. (these are new and change often since the social distancing started…. Walking is about all families can do together away from home.) Anyway, Casey was beside me and Rob was several feet behind us.

I read one to Casey that asked her to name three things that start with R. She said Rob, red and Rose. I tried another letter and she answered again, but said done.

Since it was quiet, I realized I could hear Rob. He was reading all of the signs and even answering some of the questions! He talks so quietly, I hadn’t heard him before. More proof that there is so much in their minds that we may never know about! 🙂

7. This one has been happening for a few weeks, but I’m still so excited about it that I wanted to share it again. Rob doesn’t like change in his routine and I always try to tell them before they leave in the morning (you know – before social distancing and the fact we are all here together! 🙂 ) who would be here when the shuttle brought them home or if Grandma and Grandpa were picking them up that day.

We decided to try personal care services and split Casey and Rob up. She is fine without him, but he relies on her a lot when they are together (though, in crowds, they reach for each other and hold hands 🙂 ). His buddy Bob would be taking him places, while Casey would go with Reagan. I knew Casey would be fine and she was beyond excited to go.

Rob, though – I had serious doubts. Especially since they would have to wait at their day hab until Bob and Reagan were ready and most of their friends would have left. But – Rob was awesome! He waited for Bob and never got anxious at all. Now, he gets so excited when he knows Bob is coming! Another big step of independence for him!

To anyone outside an autism family, these things may seem not worth mentioning at all. To me, they are huge steps that show the continuous progress both Rob and Casey are making. It seems every day one or the other shows me something else that they know or can do that I didn’t know about. I love being pleasantly shocked by this!

There were so many years that I doubted either of them would be able to do anything or go anywhere without me gripping tightly to them and avoiding so many places so I didn’t set off Casey’s sensory issues or his anxiety. We were somewhat isolated from everyone but close family and I expected that would continue.

I share these little things to give each of you hope that your difficult days will end, too. Not that we don’t have….umm… interesting… days at times, but not like we used to. If this lock down would have happened when Casey was little, she would still be screaming (snow days were hell – she screamed bloody murder until her regular time to come home, then she slipped right into her after school routine). Now, she is giggling about walks in the park and coloring eggs on Saturday.

I hope all of you are safe and that your loved one with autism is handling this massive change without being too upset. Please take care and look for your bright spots every day! 🙂