Category: autism mood swings

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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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Once upon a Snowy Evening – Autism and the Internet is Out

Once upon a Snowy Evening - Autism and the Internet is Out

I try not to rely on the internet and the kids being entertained by their iPads.  Most nights, the internet could be gone and no one would be the wiser.  Rob has many apps on his iPad that he uses often, so when he can’t search for Chevy truck parts or whatever has caught his fancy for the day, he’ll just draw or play another app.

Casey, on the other hand, loves You Tube.  And watching music videos.  And when she decides that is what she wants to do, there is little I can do to change her mind.  So, when the internet went out a few evenings ago, I was tense and stressed. She was not pleased.

It was snowing and even though Rob had assured me we were only getting a little bit, he was worried about going to work the next day.  (One day they had to close, we had little snow, but ice)  So he began to get anxious and he paced from his room to the dining room to look out that window. (Yes, his room has windows – and one even faces the same direction, but apparently, when you are checking the weather situation, you can only look out the dining room window that is closest to the kitchen!)

I showed Casey her Elmo apps and crossed my fingers.  She played with them a few minutes and then hit her iPad. “Fix it, mommy!”  “I can’t, Casey – the internet is broke.” “Music, mommy!”  I handed her my phone, but she refused to look at it.  “Why don’t you fold socks, Casey?”  “NO!”  “How about a color by  number?”  “NO!”  She flopped back on the couch and made her mad face.

I gave up trying to write and focused on keeping her calm.  Finally, I thought about my photo boxes.  She has her own set, but looking at my photos is always an exciting event.  Thankfully, she go absorbed in the pictures and the evening passed without much drama.  Rob couldn’t go to sleep, but he wasn’t too loud, so she went to bed as usual.

What really bothered me was the reaction I got from someone else about the evening.  This person isn’t an autism expert by any means, but when I was talking about how worried I was that she was going to have a royal meltdown, the response I got was I needed to tell her I couldn’t fix it and make her understand she can’t always get what she wants.

Really?  Ya think?  (and I’m editing my true thoughts here!) That’s not something I had ever considered doing – thanks so much for the advice.

And, yes, I know I should be more patient with people, but when I’m tired, I just don’t  need advice like that.  I know it was meant to be a helpful solution.  I know not everyone understands autism.  I know autism is confusing to those of us who live with it every day.  But – I seriously did not care at that point.

Casey and Rob have made amazing strides in their abilities.  They have grown and changed so much, but there are simply things that cannot be explained easily.  I remember once the power went out and Rob was insistent that I turn the lights one.  “Lights on!” became his phrase of the night.  Over and over and over until I thought I would lose my mind.

My brother decided to bring a generator to us so Rob would calm down.  He was on his way when Rob got frustrated and hit the light switch in the kitchen – and the lights came on.  Of all the rotten timing!  The look he gave me was priceless – he was sure I had been lying to him all evening.  (trust me – by the time I heard “lights on!” for the 100th time, I would have fixed the electricity myself!)  So now, when the power goes out, Rob flips the kitchen light switch as soon as it goes out.

My point is – there are simply some things  I can’t make the kids understand.  I have tried – many times.  I’m not being a lazy mom.  I know I shouldn’t have gotten irritated by the comment and maybe I wouldn’t have at another time, but I was stressed.  Sometimes, I just have to go with the flow and ignore people.  But – sometimes, I really just want to smack people.  (insert evil giggle here!)

So – lessons I learned from the other night.  Behavior modification (otherwise known as bribery) is perfectly acceptable to keep a meltdown away.  Some people will never “get” it.  Smacking people is never acceptable.  I don’t have to care what anyone else thinks.

Here’s to an endless supply of data and super fast streaming for each of you!

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Autism, Mood Swings and a Helpless Mom

Autism and Mood Swings

I have shared before that when Casey was young, meltdowns were a big part of her life.  She started having them at school long before they occurred at home (probably because demands were placed on her at school and home was her “safe” place).  While we rarely see those hours-long meltdowns anymore, we do still have mood swings once in a while.

I know many people with autism experience mood swings and I wish I knew why.  Anger, tears and happiness all cycle and most of the time, you have no idea why and they can’t tell you.  This happened to Casey the other night.

We had supper and she was fine.  I was having a rough week, so when she flopped down on the couch, I was happy to just chill out, too.  She had her hand over her eyes, so I thought she might have headache.  As bath time approached, she keep peeking at me from under her hand (They always think I’ll forget bath time!) and giggling.  (I’m not nearly as crazy as they think I am – I do remember baths!)

So I told her to go start her bath water, she said “no” like she always does as she jumped up to get her PJs.  I heard her giggle as she ran to her room and back to the bathroom.  A few seconds later, the screams started.  I mean screams that, unless you have heard, you can’t imagine.  I don’t know why it doesn’t hurt her throat to scream like that.  She wasn’t having a meltdown – just a scream every few seconds.

I ran to the bathroom with no clue what was happening. Rob came out of his room, so I knew he had nothing to do with whatever set her off, but he wasn’t helping the situation as he yelled “Casey, no FITS!” and set her off again.  I told him to go in this room and rip paper and shut the door.

By then, she was crying – tears flowing down her cheeks.  I tried to hug her, but hugging is not something she wants unless she initiates it.  She leaned on me for a sec, pushed away and screamed in my face.  And screamed and screamed.  And then she was crying again and leaning on me for a hug.

I kept telling her she was ok and to tell me what was wrong.  I try never to ask the kids questions – they have a hard time processing them.  I say “Tell me what’s wrong” instead of “What’s wrong?”  I told her again as she cried to tell me, but again, she pushed me away and screamed “BATH!”

So I started her water and asked if she wanted Elmo bubble bath.  She said yes and started giggling.  I was desperate to get her mind off whatever was upsetting her so we talked about going to Grandma Rose’s and Grandpa Mack’s house the next evening and seeing Mandy this weekend.  Suddenly – another scream.  (do you have any idea how screams echo in a small, tiled bathroom?)

I sat back and let her scream.  When she calmed down again, I started talking about needing a Christmas list for her and how she could write that when she got out of the bath, if she wanted to.  Yes!  She did and she started giggling again and finally, she started talking a little about Elmo and Christmas.  I took a deep breath and prayed it was over.

She was drying off when the next screams started.  By now, Rob is working himself up to a anxiety attack – humming, pacing, telling her “no fits” (which, by the way, really ticks her off!)  I ran into the other room to get him a pile of magazines and pulled his door shut again.  And now she is standing in the kitchen sobbing her heart out.  I feel so bad – I just can’t figure out what is wrong and I’m almost in tears, too.

We get her pills and orange sherbet.  As she ate her snack, I got Rob’s shower going and waited for more screams.  He was worked up and I had a bad feeling there would be little sleep that night.  He was yelling, even as he took his shower.  I got his pills and snacks ready and sat on the kitchen floor.  My dog came to lean on me and I cried on her shoulder.  Feeling helpless is one of the most terrible feelings in the world.  I couldn’t help either of my kids that night and I knew that Casey wasn’t done, yet.

She was laying on the couch again.  When I went in, she held her hand out and I went to sit beside her.  She asked about her Christmas list and we wrote down several things she wanted.  She was giggling and smiling, but I knew the mood swings weren’t over, yet.  Soon, she threw back her head and screamed again.  She pushed me away and started crying again.

So I sat on the floor about three feet from her and kept begging her to tell me what was wrong or what she needed.  Finally, she jumped up and ran to her room.  I waited for the screams to start again and when I didn’t hear anything for a few minutes, went to check on her.  She was in bed with her blankets over her head and Elmo cuddled against her chest.

I went back downstairs and checked on Rob.  He was just finishing his pile of magazines and seemed happy.  So I went in my room and had a good cry.  Life is just not fair, sometimes.  I hate feeling helpless – especially when I can’t help my own child feel better.  Sometimes, I hate autism and the pain it causes them.  I hate not being able to fix the problem and help them feel happy.

I know you have felt the same way.  Parents of “typical” kids have the same issues, at times, but at least those kids can tell their parents what is wrong.  Casey and Rob have words, when they aren’t too stressed.  When anxiety and stress hit, their words disappear and there isn’t anything I can do but wait it out.

I still don’t know what happened that evening.  She woke up the next day like nothing had happened.  I thanked God we made it through another autism mood swing and prayed He would keep giving me the strength I need.  I guess that’s all any of us can do, isn’t it?