Category: anxiety in autism

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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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Autism and the “Wow” Day

Autism and the Wow Day

I’m sure all of you know that when you plan a day of activities, it rarely goes as planned. Especially with autism in the mix – sensory issues, anxiety and so many other things can cause a day to be “off.” Yesterday, we planned a day of shopping and with the weather changes coming our way, I knew Rob may have some issues with anxiety. (Not to mention that shopping really isn’t his favorite thing to do! 🙂 )

Casey had birthday money she wanted to spend and we hadn’t had a chance to get to the mall until yesterday. I had to make a few stops before we left town and they were both okay with that. Then I realized that when Casey asked about shopping, she meant a girls’ day – not really one that included the guys. Ooopss…. but she was okay with them going with us yesterday when I promised that Mandy and I would take her prom dress shopping without Rob soon. And she was so excited to be going to the mall!

We stopped at Hobby Lobby first and she immediately dropped to the floor in the Easter section to find just the right Easter coloring book. Rob waited patiently to go look at signs while she looked at every book. Then she giggled and grabbed a set of bunny ears on a head band. She really laughed when I told her it was her money – she could buy what she wanted so she grabbed a bag of Easter egg foamy stickers, too.

We stopped by the sign section on our way to the other coloring books and Rob picked out another sign for his room and another light switch plate. (He has 3 or 4 now, but won’t let me put those on the wall – they are to hold while he looks at his iPad and must be in a certain place on his dresser the rest of the time.) Rob happily looked at colored pencils and boxes of crayons while Casey was thrilled to discover a bigger selection of coloring books that usual.

She has to look through every single one. I’m still not sure what she is looking for – I thought it was color by number pages, but she put back books with those and kept looking. After several minutes, I told her she needed to find a book – we had more shopping to do and you just never know how long Rob will stand before he gets in to his anxiety song. She finally picked a color with water Sesame Street book.

While we were standing in the check out line, I asked Rob to push the cart back to the front of the store. This is a huge thing for him, as most of the time, he’ll do it, but he doesn’t really notice people around him and I’m worried he will run into someone. But not today – he watched the lady beside us and carefully pushed it back to the other carts and came back to me. A big step for us!

Casey picked what stores she wanted to go to in the mall while Rob just waited patiently for a snack. He sat and waited while she picked out a shirt for her talent show in a few weeks and carried the bags with their other purchases. They both walked by the play area without a second glance (a HUGE step for us!) and we had a snack – without rushing! Rob finished and just watched the people around us – he didn’t start singing or trying to leave. He just sat. I was SO proud of him!

As we walked down the mall, we found the Easter Bunny! Casey couldn’t stand still from excitement! She smiled and waved at the bunny while Rob just looked at him. The photographer asked if they wanted to come in and say hi to the bunny and Casey darted right in (I was a little afraid she would flop on his lap, but she just shook his hand and giggled!) but Rob held back. I told him he could go say hi if he wanted to. He walked over, shook the bunny’s hand and looked at me with a smirk on his face.

While Casey looked at socks (imagine that! 🙂 ) Rob said “mouth” and I turned to see what he was looking at. He was talking about the Easter Bunny – his mouth didn’t move when he talked. Rob knew it was a person in a costume and not a “real” bunny. But he also realized that Casey believed it was the “real” Easter Bunny and he wouldn’t do anything to ruin that for her! Again, I was so proud of him – that is a lot of thoughts to process! She told everything she saw the Easter Bunny, but he never mentioned it again.

When we were done shopping, she wanted to hold onto me. Rob was walking in front of us (I think he was done and making sure we were heading for the car! 🙂 ) and I told her she could walk with him. She stepped up to him and they grabbed hands. I love how they look out for each other when we go places! They held onto each other until we got to the car. (He always knows what door we came in and where the car is – very handy! 🙂 ) And it dispels the myth that people with autism don’t feel empathy – he knows she feels safer when she is holding someone and he never pulls away from her.

It was getting cloudy as we drove home (we live about 30 minutes from the mall) and I was waiting for Rob to start singing his storm song, but he never did. He held onto his bag with his sign in it and looked out the window all the way home. We even went for a long walk when we got home and he never sang his song!

Autism is just a part of us and if it had popped up during our day, we would have handled it like we usually do, but it was amazing to have a day of fun without really thinking about it. Sometimes, we just need a break from the stress of worrying about going new places or worrying about what might trigger sensory issues or anxiety. Yesterday was definitely a welcome break!

I hope each of you has a “welcome” break soon! Enjoy every minute of it!

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Autism and Anxiety about the Future

Autism and Anxiety about the Future

A few days after Christmas, a doctor found a lump on my thyroid. He said many people had them and that it probably wasn’t anything to worry about, but that he thought I needed an ultrasound to see just what was going on. Anxious to get out of the office and on to shopping with Mandy, I agreed.

I did a little research when I got home, but I wasn’t worried about it. When I went for the ultrasound, I was surprised to hear there were two lumps and that one was solid, one was fluid. I was a little more concerned, but still, not enough to stress over. When the doctor called me the next day, I was shocked to learn that both the radiologist and the doctor were concerned and that I needed to have a biopsy.

Another doctor appointment was set for the following week and I’ll admit, thoughts of the future popped into my head more often. Even though the doctor has assured me that thyroid cancer is easily curable, the thought of cancer wouldn’t leave my mind. Still, though I was more concerned, it wasn’t all consuming. Just a nagging thought that came to me at odd times. I’m not one to stay awake at night worrying about things – I fall asleep as soon as my head hits the pillow. (I think it’s from all of those years of getting sleep whenever the kids slept! 🙂 )

I worry when I wake up – those first few minutes before I’m in the shower. Those minutes when it’s only Blue and I awake in the house, when wild thoughts went through my head. When worse case scenarios are so easily brought to the surface.

At the next doctor appointment, he agreed that a biopsy needed done. He wanted to do a quick ultrasound, then use a camera to look closer at my throat. However, as soon as he did the ultrasound, he said he had seen enough – no camera and I needed a biopsy as soon as possible. It was scheduled and the weekend before the procedure was not a good one for me (last weekend – our house was insane!). Thankfully, the day after the biopsy, the doctor called and the lumps were benign! The relief I felt was amazing – I felt like I had been holding my breath for days and I couldn’t call and text everyone fast enough. I just kept thanking God over and over.

During those weeks of waiting and wondering, thoughts of the future kept coming to me. Thoughts of surgery, of missing work, of possibly having to deal with cancer. And through it all, I tried desperately to hide my anxiety from everyone, especially Casey and Rob. Even though I knew that I couldn’t hide it completely, I tried to keep it from them. Casey has a real fear of needles, while Rob gets anxious enough without thoughts that I might be sick.

It seems silly, now that I know I’m fine, but those thoughts were scary. And it brought to surface the thoughts that all parents of special needs children have – what happens when I’m gone? It’s a terrifying, gut-wrenching thought. Who will care for your child? Who will advocate for your child? Who will protect your child? Who will love your child? Make sure that Elmo and friends are close and that crayons and cardboard are available?

Who will understand that he can only wear wind pants and soft, sleeveless shirts? Who will remember that they have a little snack after their afternoon pills? Who will remember she only takes baths and he only takes showers? Who will buy his special pretzels and write on her calendar? Who will care that she wants to wear her Michigan State t-shirt on Saturday and won’t get dressed without it?

And the routines… who will be able to remember all of the little things to make their lives easier and happier? That she needs to pat her clothes before she puts them on and he needs quarters in his pocket every morning, even if he never spends them. Even as I sit here, I can’t think of all of the little things that I just do every day – those things are just a part of life with autism – and they aren’t like anything else another family with autism lives with. Every one of us has our own routines.

Mandy and Cory have told me many times I never have to worry about the future, as Casey and Rob will always have a home with them. And that is a relief – a huge one, but at the same time, I still have worries. Casey talks about people who have passed away and that they are in Heaven. She believes it is a place and, if it is a place, why can’t we just go see them? She doesn’t truly understand the concept of dying. Rob talks about people who have passed away, but again, I’m not sure he understands they are gone and can’t come back.

It tears me apart that Casey and Rob might believe I just left them – that they might think I just got tired or didn’t love them anymore. Most of the time, I know thinking like this does no one any good and I push them away. We can’t ruin today worrying about the future. But it’s something we’ve all thought about. It’s scary enough to think about leaving our kids, but when they need us to protect them, it’s even more terrifying.

I am lucky. Casey and Rob have Mandy and Cory and others who will love and support them. Casey will believe I went to Heaven and that she will see me again someday. Rob is a mama’s boy and may have a harder time with me being gone and that breaks my heart. I know there is little I can do about something I have no control over. Today has it’s own problems and usually, I have no energy to think about the future. The last few weeks just brought those dark thoughts to the surface and I wanted to share my thoughts on something that most can only talk about to other autism/special needs parents.

Make the preparations you can for your children. Prepare a will, maybe a trust. Teach them as many life skills as you can. Help them be comfortable with a large circle of support. Share the little details that make your children special. Tell people about their “quirks” and their routines. Then more you feel prepared for something you can’t control the less the future will scare you. Trust that God will always look after your amazing children.

And, as I said earlier, don’t ruin today with thoughts of a future you can’t possibly know. Live, laugh and love! 🙂 Enjoy every day and let the future take care of itself. Trust me, I’m not blowing off your concerns – I’m only saying that you can’t let it consume your life.

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Autism and Terrible Anxiety

Autism and Terrible Anxiety

I’m not going to lie. Yesterday was NOT a good day here. We don’t have rough days often – or at least days that the “roughness” lasts all day, but that’s what happened. I even wrote a blog yesterday, but I had to delete it and start over. It was terrible!

So – in the last week, we have missed a day of work for ice (which Rob knew was coming – and I would have, too, if I had picked up on his clues. Now it’s obvious – at the time, I wasn’t thinking about the weather at all!), I had an appointment that didn’t go as I had hoped and I was anxious about that, we had a huge snow storm heading for us and then, of course, the full moon/eclipse for tonight. It’s no wonder we were all a little anxious, but it was worse than I thought.

Instead of snowing early yesterday, it rained. And rained. And rained. I mean, pouring buckets. We all wanted snow. I was already worried about how Rob would be feeling when he got up because he had a hard time getting to sleep Friday night. It’s been a while since that happened, but he was awake until after 1, quietly singing his anxiety/storm song. I knew the storm was coming.

I let them sleep as late as they wanted and he seemed okay when he got up. But, as soon as Casey got up, he ran to her room and started watching Power Rangers. That was fine for a while, but then he started his storm song. She was anxious about the weather, too, and wanted to be in her room folding socks and listening to music. He wouldn’t leave. (He has a DVD player and TV in his room, but he refused to use it. When I brought the movie to his room, he ran in, grabbed it, shut everything off and went back to her room). So I was waiting for her to have a meltdown. Irritation was written all over her face.

His song got louder and he started adding a few yells every 4th or 5th repetition. I gave him clay… magazines… his iPad…. offered him snacks. Nothing worked. By evening, I was even more on edge and ready to have a crying meltdown. I kept praying that it would start to snow (Sometimes, that helps him calm down – that the storm was actually here). But nothing but rain…. dreary, depressing rain.

By supper time, he had been repeating it over and over for 6 hours. I counted once – he averages 3 times a minute. That’s over a 1,000 times. It’s not that he was close by us, but the sound carries. It’s like a mosquito buzzing in your ear. It’s not loud, but drives you batty. And trust me, I don’t need anything else to drive me nuts. 🙂

After supper, Casey relaxed. She was grinning and talking about dressers and stuffed animals and her birthday (not til March, but why wait?) She giggled and smiled and truly, I didn’t care why she was happier, only that the threat of a screaming meltdown from her seemed to have passed.

When he came down for his shower hours later, I told him he couldn’t watch Power Rangers anymore, as Casey would want to watch Elmo before going to bed. As soon as he got out of the shower, he ran back up to her room and started the movie and the singing again (he also sang through his shower!) When she was ready for bed, he came down, but his song was even louder down here. I was as close to tears as I’ve been in a long time. I just knew he wasn’t going to go to sleep.

He finally took a pile of magazines, but kept repeating his song. (Someone suggested I record it so you can all hear it, but I’m not sure I want to do that.) I took Blue outside and went to watch TV while I waited to see what he would do. In less than 10 minutes, I realized I hadn’t heard him and was shocked to find him sound asleep! I just kept thanking God over and over and prayed that he slept all night.

He started “singing” at 11 yesterday morning and finally stopped at 9:30 that night. He repeated it almost 2,000 times. I call it his song, but there aren’t always many words. You can understand “John Anderson, John Michael Montgomery, Josh Turner, Long Black Train” and sometimes “Splat” after a series of sounds like trains on tracks. The beginning is always the same, the ending changes. Some days, I don’t even notice it.

I was worried that today would be a repeat of yesterday because even though the storm has passed, the full moon and eclipse are still tonight. (Anyone who says that doesn’t effect anyone needs to live in my circus through a full moon cycle!) I’ve even heard that the new moon bothers some people. Some months, Rob is more anxious for about a week around the full moon. Other times, he doesn’t seem to be too concerned about it. Casey feels it just for a few days. It may bother him more because he has more anxiety than she does.

I am so blessed to be able to say that, so far, anyway, they are both happy today. He is really quiet and doesn’t want to talk very much, but he has his iPad and magazines. I haven’t heard that song at all (Knock on wood!!! 🙂 ) She has been laughing all day. She is also happy their workshop is closed tomorrow – another reason he may have been more anxious, since that’s a change in his routine.

If his anxiety was the result of all three things happening together, at least I don’t have to worry about a super blood wolf moon eclipse for a few years! (Always look on the bright side! 🙂 ) I’m sure he doesn’t feel like himself today, but he’s coping and that’s all any of us can do. The wind is blowing and that always bothers him, too. Today will be a demand free day – they can do what they want without my interference! (well, most of what they want, anyway! 🙂 )

I hope that each of you are coping, too. Deep breaths, folks. Or cry, if you need to. If you are near the snow, be safe!

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Autism, OCD and the Can’t be Rushed Morning

Autism, OCD and the Can't be Rushed Morning

The kids and I have a routine for the mornings when we are all leaving the house about the same time. It works well for us and we have a little time to adjust, if necessary. But last Friday morning was one that about put this almost crazy autism mom over the edge.

Casey and Rob were going to spend the night with my parents that evening. Since they both “need” certain blankets to sleep with, I told Mom that I would bring their stuff out before I went to work that morning. The kids have been leaving in plenty of time for me to do that. Until….

I had a hard time getting up that morning, but I was still almost ready when I woke Casey up. She stumbled to the kitchen (she wakes up like I do – barely moving most days! 🙂 ) grabbed her pills and juice and wanted waffles for breakfast. Not a problem, but somehow, I had managed to not have our lunches packed (Blue took forever outside!) and I still needed to pack their clothes for Grandma and Grandpa’s house.

I’ve packed for them before and had to unpack and let them do it, so I told Casey to go get her clothes and the blanket and stuffed animal she wanted to take to Mom and Dad’s house. Somehow, this translated in her mind to lay back down on her bed. I’m trying to get lunches packed when I realize I hadn’t heard her in the bathroom. After several calls up the steps and a threat to go get her, she came down – without her stuff. So we went back up – together – to gather it all and get her packed.

She went into the bathroom as I went to get Rob up. He rolls over as soon as he hears me every morning and grabs his juice and pills. I handed him his breakfast and went to get his bag so he could pick what he wanted to take. Of course, I couldn’t find his bag – he decided it didn’t belong in his closet or the closet upstairs (but did he tell me? of course not!) I finally found it and started packing his blankets only to have him pull them back out because I packed the burgundy one first – and the brown was is supposed to go on the bottom.

So, I put the brown one in, the burgundy one and the blue one – only to be told I packed the wrong blue one – and he pulled everything out again, because he wanted the right blue one in on top of the brown one and under the burgundy.

I hate to admit it, but by now, I’m grinding my teeth. None of us are ready, they are packed, they haven’t had breakfast and their ride would be here in less than 10 minutes.

So we try again – and finally the blankets are properly packed. He needed to change his shirt before work (He has a few old shirts that I told him he could wear at home, but needed to be changed before work.) He was fine with changing his shirt, until I pulled out his coke shirt and he was wearing the official “wear only with the coke shirt” pants. So he yanked off the shirt he was wearing and put the coke shirt on, but then realized he wanted to wear the coke shirt at Grandma and Grandpa’s house, so he completely stripped, stuffed those clothes in his bag and pulled another pair of pants and shirt out of his drawer. And I hear the minutes ticking by.

I knew then I was never going to be able to leave when they did.

Casey came to me for help in brushing her hair and decided she had the wrong socks on to wear with her boots. (I have no idea why!) So she disappeared upstairs to find the right socks, while Rob is stuffing his feet into snow boots because Casey is wearing boots. Then she came down in tennis shoes, so he ran back to his room to put tennis shoes on. And I’m sweating and ready to start swearing under my breath.

She finally sat down to eat her waffles. He turned the TV on and immediately started singing his storm song. Over and over again. She stopped eating to watch him. He quieted a little, she finished eating and went to get her coat. She had her red coat on, but wanted a scarf. I told her to get the scarf Mandy made her. No. That scarf can only be worn with the Elmo hat Mandy made. So wear that hat. No. That hat has to be worn with her black coat. (By now, I am so ready to start cussing – you can’t even imagine.) So wear the black coat. No, it’s Friday. (AHHHHHH!)

I took a deep breath and said go get a scarf. No. Fine, then don’t wear one. She stomped to the couch and flopped down. I got her one of my scarves, but you can imagine how that went over. She started getting upset as I can’t find another scarf that will make her happy. Rob got louder and Blue started barking. I still am not ready for work, nor do I have my lunch packed or Blue fed. And I’m so stressed by then, I can’t even think what I need to do first so I can get out of the house on time.

Casey was still asking for a scarf. Finally, I understood she wanted a new one, but that she also wanted a new hat and gloves, too, because you simply cannot wear an old hat or gloves with a new scarf. I’m done. By then, I didn’t care if I ever saw another scarf.

Their shuttle came around the corner and Rob suddenly remembered he needed his headphones for his iPad. I told him I would get them, but of course, I grabbed the wrong pair (how was I supposed to know there is a certain pair for Fridays at work??) Casey was walking out the door when she decided she packed the wrong slippers for Grandma and Grandpa’s house. I asked which ones she wanted and told her I would get them after she left. She stopped on the porch as if she was deciding whether I could handle such an important task, but finally, they were both on the shuttle and I could close the door.

I thanked God that most days aren’t like that one. Truly, had I not needed to take their stuff to my parent’s house, it wouldn’t have been any big deal. And I knew mom and dad would meet me in town to get it, but I was in a rush by then and wasn’t thinking about that. I had too much on my mind last week and not enough sense to calm down and forget the other stuff for a few minutes.

Luckily, when one of the kids has a morning like this, the other doesn’t pay any attention. It was just dumb luck (and the weather change, I’m sure) that they both had OCD issues the same morning. I’m just glad it’s over (and that I made it to school – with about 30 seconds to spare! 🙂 ) and I’m hoping not to have another morning like that for a long time!

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Autism and the Really Bad Night

Autism and the Really Bad Night

I’m tired.  There’s no other way to say it.  I’m not sleepy tired –  just tired of stuff.  Rob had a terrible night Friday and we didn’t sleep much and I think that’s catching up to me.  (I’m always okay the day after no sleep, but man, that second day is a killer!)  Thank you, autism, anxiety and an almost full moon.

I’m still not sure what was going on with him.  There are many possibilities and he can’t tell me what was bothering him.  He didn’t say he was sick or needed Dr. Myers, so I don’t think it was his ear.  He was just off when he got home from the workshop and as the night went on, he got louder.

At 1:00 in the morning, he let out a yell to wake the dead.  I ran to the bathroom to find him leaning over the sink, but as soon as he saw me, he grabbed me in a bear hug and couldn’t let go.  We stood there for several minutes before he would let go and lean his head on my shoulder.  I finally got him back to bed and sat with him for a few minutes before he said “Goodbye, Mommy Jen.”  (He always says that when he is ready for me to leave him alone.)

I’m not sure what time he went to sleep, but I didn’t hear him again.  I kept waking up to check on him and when I was asleep, it wasn’t a restful one.  Things just kept running through my mind…

Was he upset about me telling him to leave the emergency windows alone on the shuttle?  He had been playing with it and the shuttle driver asked him to stop and slide away from it, but he didn’t listen.  I know how much he likes Warren, so for him to ignore him is odd.  Maybe he was worried that Warren was mad at him?  (Rob gets extremely anxious when he thinks someone is upset with him)  When I talked to him, I just told him he needed to listen to the driver and leave the window latches alone, but who knows?  Maybe he was dwelling on it.

Maybe the not quite full moon was already having an affect on him.  I know some months are worse than others and I never know which kind of month we’ll have.

Or maybe his ear was still bothering him and he just didn’t want any more ear drops in it.  But he hasn’t pulled at it for several days, so I don’t think that’s it.

Maybe his room was too hot…. but he had his AC on.

He was a little upset before he went to the workshop that morning about our still unresolved issue.  (It has nothing to do with the workshop, but a family issue.)  I keep explaining to the kids that the problem isn’t them at all and Casey believes this (she rarely thinks anything negative about herself.  🙂  ) but Rob takes it so personally.  Maybe he was fixated on that and wondering why things changed.

Was he hungry?  Too tired?  Who knows?  And so we both cried in the bathroom in the middle of the night.  I hate the helpless feeling – when your child hurts, you want to fix it and I didn’t even know where to begin.  I thought maybe if he got comfy in bed, a few words would come, but they didn’t.

I let him sleep as long as he wanted Saturday morning.  He was still off when he got up, but didn’t seem to be as upset.  He didn’t enjoy his trip to the Dollar Tree (a favorite place to go) and yelled his anxiety song the entire time we were in there.  Usually, I don’t care what other people think, but being tired, I just wanted him to settle down.  So I tried to calm him and it had the opposite effect.  He knew he was stressing me out and got even more anxious.

Luckily, we were going to a car show to see Cory’s car and he calmed a little there.  He enjoyed looking under the hoods of all of the cars and sitting beside Cory’s car.  He was still loud, though.  And it was still getting to me.  I know that’s the absolutely worst thing I can do, but I couldn’t help it.  I was just done.

Tracie suggested we take the kids for a walk after the car show and they both enjoyed that.  He seemed happier after that (seeing Tracie, Cory, Mandy, Grandma and Grandpa helped, I’m sure) and took a short nap before he had supper.  But then, I had to keep waking him up (I was afraid he wouldn’t sleep again, if he slept too much during the evening).  He took his shower early and slept all night.

I was so relieved!  My head knows there is little I can do but offer comfort when the kids are having a hard time, but my heart wants to do more.  I feel like I should be able to figure out the problem, even if they can’t tell me.  I just ache when they hurt and I can’t help them.  And I resent autism.

I get angry when I know what problems are and still can’t help them.  I want to scream at people to make them see the pain they are causing, but I know it won’t do any good.  I just keep praying the situation will resolve in the kids’ best interest.

I know every one of you knows exactly how I feel.  Autism definitely brings out the helpless feeling more than any of us want.  It brings out anger and resentment.  None of these are especially good feelings – they are ones I sure want to avoid!

I’ve got my fingers crossed that the full moon comes and goes without a repeat of Friday night.  It’s been years since we’ve had a night like that (we’ve had sleepless  nights, but not one with this degree of autism anxiety) and I hope it’s years before I see another.

I hope the full moon effects aren’t too bad in your homes this month!  Good luck!

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Typical Week of Autism – What’s Next?

Typical Week of Autism - Whats Next?

This was a typical week of autism.  High highs and some lower days, too, but not super bad low so we’ll count it a good overall week.

Monday, we finally got to visit a state park about two hours from us.  Casey has been asking to go since last summer (it was one of those, yes, we’ll go and then ran out of summer days!) and she was thrilled.  However, despite being happy to  go, I was worried.  She had had major sinus issues all weekend and I had even told Tracie we would probably be at the doctor for a sinus infection instead of hiking.

She shocked me, though, and seemed better Monday morning.  She got out of breath a few times because her nose was stuffy but she laughed and giggled all day.  We had a picnic lunch before we began our hike and they both enjoyed that.

We visited Old Man’s Cave in Hocking Hills State Park.  The caves aren’t actually caves, but giant rock overhangs that people used to live under many, many years ago.  It’s so pretty and the trails are easy to follow.  Rob enjoyed looking at the creek and the little waterfalls – until we got to the “cave.”

He was walking with Tracie and seemed okay walking in at first, but he quickly decided he wasn’t staying.  There were a lot of people (but not super-crowded) and he turned to go back up the trail.  Nothing we could say would convince him to walk farther to see a bigger waterfall.  It wasn’t a big deal, so we turned around.

He stayed well ahead of us to make sure we wouldn’t try to make him go back and it wasn’t till we were back near the car that we both had an idea of what the problem might have been.  It hit me that he is severely claustrophobic – maybe the overhang (which was barely enough clearance for him to walk) was just too close for him.  Tracie remembered it was supposed to rain/storm later and we knew either reason could be right.  Or he was hot.  Or he had to go to the bathroom.  Or… or… or….  who knows?

Because it was so hot, we decided to drive to different parts of the park instead of hiking the entire path (several miles).  He jumped out of the car at the next place and happily started the hike.  Even when we had to walk down many flights of steps, he was fine.  He looked around and laughed.  Again, it wasn’t until we got close to another overhang that he got anxious.  He stood still (sort of!)  for one picture and then took off up the path again.  We had to keep telling him to slow down, as this was rocky and we were both afraid he would fall.

There was another spot nearby that had a waterfall and the hike wasn’t too long.  As soon as we got into the woods and looked down at the pool of water and the falls,  both kids got big smiles on their faces.  When we finally got down to it, there were several people wading in the water (it was clearly marked no wading or swimming…. but…  🙂  )   So I took my shoes off and asked Casey if she wanted to go wading.  She immediately took hers off.  I knew Rob would never go wading, but I had to try.

And he sat down, yanked his shoes and socks off and came right to me!   To say I was shocked is an understatement!  He never goes wading – ever.  I don’t remember the last time I saw him do it – not since he was little, I’m sure.  He walked through the cool water, found a big rock to sit on that he could still keep his feet in the water and he let the waterfall hypnotize him.  It was the best part of the day!  He looked so happy and relaxed!

Unfortunately, after our fun day of hiking, Rob and I both woke up with stuffy noses and coughs.  I thought it was allergies, but then we both had no energy.  He asked for the doctor one night, but then changed his mind.  So we took it easy all week – coughing and resting.  It’s just way too early to be dealing with this stuff!

We also had to deal with another issue that had both kids anxious and upset.  While I do share a lot on this autism blog, there are things that I believe are too private to the kids – or that may make the problem worse if I write about it.  It’s nothing I can change, fix or fight about – nor can I explain it to them to make them understand what is going on.  So besides not feeling good, they are both upset about this problem.  A low point of the week – trying to explain that they are not the problem.  Rob takes things like this very personally and is having a harder time than Casey.  She just keeps asking.

On Friday, they were supposed to go swimming with a group of friends from their workshop.  I had a feeling it wouldn’t go well, as this was the pool that Rob got stung at last year and he never forgets things like that.  But,  he wanted to go and I want him to try whatever he’s comfortable with.  I told staff that I would be available all day so I could go get him if needed.  He wasn’t there long before the anxiety got to be too much.  So I brought him home and wondered why exactly he was anxious.

Was it the weather?  (more storms coming!)  The bee sting?   The fact there aren’t any fountains to stand under in the pool?  Not feeling good?  The stress he was already feeling?  As a mom (thank you, Yvette!) commented on our Facebook page (and I LOVE this – it’s perfect for autism!) it’s like the Tootsie Roll commercial – how many licks does it take?  The world may never know!  I’ll never know why and he can’t tell me.  And I’m left thinking that sometimes, autism just isn’t fun for any of us.

So this week has been up and down with autism.  I am so proud of the things they accomplished this week!  I can’t imagine having a head full of thoughts and not being able to express those thoughts easily.  But every day, they keep trying with smiles and giggles.  If only we could all face our troubles like this!

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Random Thoughts from an Autism Mom

Random Thoughts from an Autism Mom

Usually, I have a pretty good idea of what I want to write about a few days before I sit down to write this blog.  This week has been so crazy that I’ve jumped from idea to idea and none are working.  So, for something different, I thought I would share some thoughts I had about autism and our lives.

Autism thought #1.  Full moons are beautiful.  I love sitting on the porch steps and looking up at this perfect circle and imaging all sorts of thoughts.  I also hate full moons!  I dread them with a passion because I never know if this will be a good moon or a bad one.  This one was not good.  We felt the affects all week and while they are subsiding a little, I can still hear/see the anxiety in both kids.  Rob has been loud and anxious most days and Casey is on edge.  Thankfully, we’ve made it this far with no major behavior issues.

Autism thought #2.   Rob is still surprising me nearly every day with a new skill or ability to try something new.  He is enjoying more activities at the workshop and has more patience to be in new places.  Today, we went to my aunt’s house to pick up several things and he wandered around her yard like he had been there a million times.  He never sang his stress song and he even helped load the bricks into the car. (He did, however, freeze at the sight of a huge cricket on the brick he was holding.  Thank Mandy for that!  🙂 )

Autism thought #3.  I don’t understand selfish people.  I don’t understand how people can put their own wants above their child’s needs – especially a child who doesn’t understand why things are happening the way they are.  Selfish people are one of my biggest pet peeves and I’m getting irritated just thinking about it.  How can parents explain things to children they barely understand themselves?

Autism thought #4.  I wish the kids were able to tell me what they are feeling.  Maybe I’m getting too worried about selfish people when Casey and Rob really don’t care.  And Rob was rubbing at his ear again the other day – does he have another ear infection coming on?  (he had one right before camp and he was able to tell me it hurt and he needed Dr. Myers.)  Casey is so on edge – if I knew what she was feeling, maybe I could help!

Autism thought #5.  I wish – and I mean, really, really wish – that Casey’s memory wasn’t as good as it is.  She can remember things from before she was a year old. (When asked what happened on March 22, 1988, she said “got born, got cold, cried.”) She remembers what day we do things and used to expect the same thing to happen the following year.  For a long time, she got really upset if we didn’t follow the same dates, but now, she just reminds me.  Over and over and over.  On this day last year, we went to a state park near us and went swimming.  So, she was insisting we do that today, too.  Luckily, going to my aunt’s house made her happy.  But I know I’ll be hearing “Salt Fork, Salt Fork” many times until we finally make the trip.

Autism thought #6.  How weird is it that I’m thinking of finding someone I know, but the kids don’t to see if they will leave with a stranger?  This has been weighing on my mind a lot lately.  I hear of so many kids that are taken and it makes me sick.  Several months ago, Casey and a group of friends were followed in our local Walmart and then to another store.  Luckily, the staff that was with them noticed and kept the girls together until another staff member got there.  (the men were driving a windowless van and left when the male staff arrived.)  It scares the hell out of me.  Most of me thinks they would ignore strangers, but what if that person said they had French fries?  or a coloring book?  I just want to know if I’m worrying too much.  I’m sure if a person tried to grab them, the fight would be on, but if they just talked to them, Casey and Rob might walk with them.  (Not that they are ever alone in a store, but if one wanders off while I’m helping the other?)

Autism thought #7.  I feel guilty.  I don’t think I do enough with the kids at times.  While most of the time, I know this isn’t true, I wonder.  Casey would love to travel more, but Rob wouldn’t.  The effort to balance both their needs is exhausting at times and adds more guilt that I really don’t need to feel.

Autism thought #8.  I’m tired.  Lately, I’ve had a hard time relaxing – I always feel like I need to be doing something.  I have a list of things I wanted to get finished this summer and I feel like I’m running out of time.  I’ve missed yoga and working out just to work on another project.  Late last week, I decided enough was enough.  I left everything alone on the list and worked out.  Then I did yoga – and I felt amazing.  Relaxed.  I really need to stop running around and feeling like I’m accomplishing nothing.  One thing at a time and no more trying to do a million things at once.

Autism thought #9.  Blue (our new black lab puppy) was a good choice.  She wants to play with the kids, but seems to understand they aren’t like me.  I took her to the kids’ workshop the other day, fully expecting her to be wild (she loves attention!) but I was surprised!  When some people pet her, she wiggled and was her usual self.  When others, who had more physical issues, wanted to pet her, she lay still in my arms or stretched to lay her head on their arm or shoulder.  She sensed what they needed.

Have a wonderful, full-moon-less week!  🙂

 

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Autism and the Every Day Never Simple Questions

Autism and the Every Day Never Simple Questions

Autism is part of our lives.  A huge part – even if we don’t always consciously think about it.  I’m facing a decision  now that should be fairly easy, but autism is causing me to rethink everything.

Several months ago, I lost my sweet lab to lymphoma.  She was just a baby when we got her and she grew up around the noise and unexpected jumps, squeals and screams that occur around here.  Even with that, when Casey had a meltdown, Eve would get anxious, barking and trying to get between Casey and I.  She never tried to bite Casey or even jump on her –  just barked like crazy.

(Picture the scene – Casey jumping up and down and screaming bloody murder while the dog is barking a high pitched bark and bouncing around with Rob rocking and yelling “no fits, Casey!”  It’s a wonder my neighbors haven’t moved away!)

Losing her was one of the hardest things I’ve had to deal with.  She was my best friend – the one who listened as I vented and let me cry on her shoulder.  When Mandy and Cory lived in Texas and it was just Casey, Rob and I in the house, Eve was my buddy.  I talked to her about everything and she kept me from being lonely.  When she died, I felt like I lost part of me.  I had no idea when I would ever feel like getting another dog.

In the last few weeks, I’ve been thinking about it.  I miss having a dog around the house, but I still think about her and wonder if I’m ready for another one.  She had so many quirks (I sometimes think she “caught” autism!  🙂  )  I wonder if I could let go of my expectations of the same quirks in another dog.  I wonder if I will love another one as much as I loved her.  And I wonder if another dog could be okay living in my circus.

I thought about getting an older dog – one that may not be as adoptable because of their age.  But – what if they can’t handle the noise?  the sudden movements?  The kids’ safety is the most important thing to me and a new dog is scary.  So maybe a puppy would be better.  One that could grow up with us like Eve did.

And today I realized that once again, autism is dictating our lives.  It should be a simple decision about whether to get a dog or not.  I get so tired of having to overthink every single decision I make.  Would Rob really wear that super soft shirt?  Will Casey be mad if I switch plans from one day to another?  Even what to have for meals!  (though that isn’t as  bad as it once was – I make what I make and Rob adapts to it or makes a sandwich)

It’s exhausting to have to think through every choice I make.  The kids want to go swimming.  Simple enough, right?  No, it isn’t.  Taking them to the pool without help is not going to happen.  Neither is taking them to the lake (though that would be easier, simply because they will stay together and with me).  I can’t take them to the river alone.

They want to go hiking.  Okay – great!  Outside and exercise… except, again, it isn’t that easy.  If we go  near a creek, Rob wants to sit and watch the water and relax while Casey wants to walk as far as she can.  He will walk, too, but watching water relieves his anxiety so much, it’s hard to drag him away from it.

This isn’t to say we don’t go lots of places without an extra adult, but going to strange places or where there are possible dangers is so much easier with an extra set of eyes on them.  They don’t run off like they used to, but who knows when it might happen again?   We do lots of things, but it’s always seems like it’s a big decision to go.  I’m tired of that.

I just want to decide to do something and do it without trying to think through every possible thing that can go wrong.  I want to take the kids to the pool if they want to go.  (I have taken them, but it’s hard and not something I really like to do.  We have a large aquatic center with a kids play area and sets of water slides – too much area for me to be able to watch them easily.)  Tracie will go with me – but there again, we can’t just go.  I need to see if she’s free and wants to go and plan from there.  I wonder if families who just decide to go swimming and leave know how lucky they are?

I try not to overthink choices too much but it’s hard when Casey and Rob are so different – even without the added stress of autism.  She wants to go – he wants to stay.  She will try anything – he has to think about it and often says no.   They are similar in ways, just like siblings usually are.  But, still, don’t you think it’s exhausting to always have to think about big (and little!) decisions so much?

Don’t you wish you could just say “Yes!  We’re going!” without thinking about the possible sensory issues or meltdowns or safety or food preferences?  I know I do!  At the same time, I wouldn’t change either of the kids.  Autism is as much a part of them as their hair color.  There are just times that I don’t want to have to think about how autism will affect a decision.

Most of the time, I don’t really think about it, I guess.  Our life is autism and I don’t think about a life without it.  I make decisions just like every other parent, based on what would be best for our family.  Autism is just so unpredictable that sometimes, decisions are hard to make.  I wish I could just decide to get another dog and go pick one out.

I asked Casey what she thought about a dog.  She wants a big one.  Rob wants Eve.  So do I.  So like everything else, we’ll see what happens.  I’m a firm believer in things happening when they are supposed to.  When it’s time, the right dog will find us.  Eve will make sure of it.

 

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Autism and a Mom’s Fear of No Fear

Autism and a Moms Fear of no Fear

A few weeks ago, I was reminded again that even though Rob has learned to fear a few things, he still doesn’t have a clue about how dangerous some situations can be.  Just another fun aspect of autism we deal with every day.

Rob was walking with a group from their workshop and never bothered to stop at a corner to look both ways before he stepped off the curb.  Luckily, the staff was quick and there were no cars coming.  But still, I have been trying to teach both of them to look both ways before crossing a street since they were tiny and it just won’t sink in.

Casey will flip her head like she’s looking, but she’s just doing what she thinks I want.  She isn’t really looking at all.  And she’s stepping into the street as she “looks.”  Rob won’t even hesitate to walk across a parking lot or a street.  He doesn’t even pretend to be looking.  I’ve got a grip on both of them or they are close enough to grab when we walk anywhere.

Part of the reason they aren’t scared is that even though I tell them a car might hit them, it’s never happened.  They have nothing to help them understand that they could get hurt and very badly.  I think the only way for either of them to understand the danger would be for one (God forbid!) to get hit by a car.  Even then, I’m doubtful the other one would be more careful.  It’s not something they have ever seen happen, so obviously, it’s never happened to anyone.

They both understand a stop sign.  They just don’t know why it’s there.  I’ve tried saying “Look, I’m stopping at a stop sign” when I’m driving, but they don’t even look up.  When we walk, I say “Look – a stop sign.  What do we do?”  One of them will say “stop” as they walk right past the sign.

I don’t want to even think about the times I walked through parking lots when Rob was a baby.  I would be carrying Rob, with a death grip on Casey and praying that Mandy would hold Casey’s other hand (Mandy is 18 months older than Rob – hardly more than a baby herself when I was trying to get us safely to the car).  I carried Rob longer than he needed, simply because he and Casey would both dart away and it was easier to carry him.  Thank God, we never had a major issue (just a minor one with Mandy when she was older!)

When Casey was 7 or 8, we were all outside playing.  Suddenly, I realized she wasn’t in the backyard anymore.  I thought I would throw up as I ran to the front of the house and the street.  No sign of her – I ran around the house again, calling her name and wondering who to call first to help me find her.  As I was making another circle, I heard her giggle and looked up to see her legs hanging off the porch roof.  She had climbed the wrought iron corner posts and was just sitting there.  I still don’t know how she managed to climb over the edge without falling.

I stood there looking up at her while she laughed and kicked and wondered if I could get her down without both of us falling.  I was heading in to call the fire department (my dad was a captain) and ask for help when I had an idea.  I asked Casey if she wanted a popsicle – and she flipped onto her belly, stuck her feet on the posts and came down.  I couldn’t breathe until her feet were safely on the porch.  “Red!” she said and went inside.

She also jumped off my dad’s boat more than once.  She walked out into water until she had to tip her head back to be able to breathe and keep going (one of us was always thisclose to her – and she always had a life jacket one!)  She grabbed at knives and jumped off the top of their swing set.  She was crazy on the trampoline.  She ran when she had the chance in stores or at school.

Rob was even more of a dare-devil than she was.  He jumped off the roof into a pile of shingles, did a somersault and took off running.  He jumped into pools with no thought of whether he could touch or not.  He climbed scaffolding (yep – I lost him on it once – thank God I heard him giggle as he watched us run around the house looking for him!)  He tried walking down our basement steps with a blanket on his head and fell – earned him a helicopter ride to the nearest children’s hospital when he wouldn’t wake up the next morning.

He jumped down the other steps and broke his collarbone.  He fell and cut his head open – stitches.  We no sooner had a hospital bill paid off than he did something else.

Neither of them understand the danger of strangers.  They have been told more times than I can count to never leave with someone they don’t know, but I worry that if the stranger offered them the right things, they might go.  They know to find a policeman or fireman if they need help and they both know their names and addresses, but would they really look for help?  I doubt it.  Having them disappear terrifies me.

Even though they have both learned to fear some things, I still worry when we go somewhere different.  I’m more relaxed, but still know that any second, one could dart away.  Rob has a healthy fear of deep water now (he jumped into a pool with a friend who is much taller than him and couldn’t touch – scared him beyond words)  Casey is afraid of heights (she insists on riding the Ferris wheel every year at the fair, but it scares her to death when she is at the top!)

I am so thankful they are both learning to be more careful.  I know that they will probably always be somewhat fearless compared to others, but at least they aren’t jumping off the roof anymore!  And I know how lucky I am that neither of them ever tried to get out of the house.  I know several families with more locks on their doors and windows than a vault and still need alarms.

What I really want is to watch them every second of the day, but I know that’s impossible and not healthy for any of us.  They are adults and need some space from me – and I need a break from them.  But still, I think about it – the world is such a scary place – especially when you don’t understand those dangers.

My plan for the future is simple – lots of hair coloring to hide the gray hairs that pop out every time they run across the street without looking or when Rob swings so high or when Casey wants to look at coloring books in a store by herself.  And lots of deep breaths to keep from panicking at their little “thrills.”

Be safe, everyone!