Category: anxiety in autism

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Autism Moms and the Need to Just Chill Out

Autism Moms and the Need to Chill Out

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Autism and the Unpredictable Speed of Change

Autism and the Unpredictable Speed of Change

When you live in a house with autism, you become adapt at keeping things the same – the same foods, the same schedule, the same clothes.  That’s why Rob’s changes in the last few weeks have pleasantly shocked me – and made me wonder “WHY?”

Rob doesn’t like new foods, new clothes or new places.  New people make him nervous until he gets a reading on them (Both Casey and Rob sense the true person inside – if they don’t like/trust someone, I watch that person closely!)  But, last week, he put a new shirt – all by himself.  Now, yes, it was the same brand that he loves, but that has never mattered before.  Even a new shirt that was exactly like an old one was something to avoid.

He used a hammer to hang up signs in his room instead of telling me to do it.  He made pancakes.

He ate canned fruit a few weeks ago.  Not because I asked him to try, but because he saw it in the refrigerator and asked for it.  (apparently, it has to be canned pineapple, not the little snack packs, because he refused to eat those – but, hey!  He tried!)   He also tried a blackberry (and it flew across the room when he spit it out!)  I can put different things in his lunchbox.

He has been coming home and not running for his iPad immediately.  He has been playing with his Legos, lincoln logs, trains, and magnetic blocks again.  He does still get excited about ripping up magazines and cardboard, but isn’t actively searching for it.  He lays on his bed and just chills out.

The staff at their workshop said he has been joining in activities more at the shop.  I heard stories about his laughter and how silly he can be.  A few weeks ago, a strap on his sensory swing broke and he fell (not far – thank God he was just sitting in it and not swinging widely!).  I was so worried about him not having his swing.  When it was installed, it was to help him with the out of control anxiety he was dealing with every day.  I also worried that even if it was fixed, he would never use it again – he tends to remember when painful things happen and can’t understand that just because it happened once, it may not happen again.

So I filled out the paperwork and the part was ordered.

And now, he acts like he doesn’t need or want it.   HUH??

Last week, he went to play Bingo at a nursing home.  (WHAT?)  A staff member asked anyone who wanted to go to get their coat and he did.  While we have played Bingo at home, he loses interest quickly.  He even played while there!  A new activity in a new place?  The autism mom in me was suspicious.  What’s going on?

The moon isn’t full.  The weather is as crazy as it’s been for weeks.  His meds haven’t changed.  The people around him are the same.  Our schedule is the same.  I wracked my brain trying to figure out why he was so willing to do new things.

After Bingo, he went to aquatic therapy, which he loves.  On his way home, he stopped a staff member to show her his swimming bag.  It has Mighty Morphin Power Rangers (the first ones) on it and he named them all for her.  He started a conversation!  Rob talked first!  Can I be any happier??

The next day, he went to a care center to do crafts with residents.  He talked more about the power rangers.  He sat and did as he was supposed to.   And as happy as I am, I want to know why?  What changed and what can I do to keep him excited to try new things?

He went to play basketball. He went to a gym and walked.  He came home and got sick later that night and even that was different.  He’s always been too scared and upset to be alone when he is sick.  This night, he took care of everything on his own.  I didn’t even know he was sick.  I did stay up with him, as he never went to sleep that night (or until early evening the next day, even though he was feeling much better).

His schedule changed Friday evening and he didn’t care.  He played with his blocks and went to bed.  The weather changed quickly last night and he hasn’t seemed to notice.

I am over the moon happy for all the positive changes.  I am so proud of him for trying things that truly stress him beyond anything I can imagine.  But, I still want to know why?  Has he just matured?  Was he spending too much time in the swing at the workshop?  But how can you tell, cause it wasn’t that long ago that he couldn’t get through his day without that soothing him.

Something like this happened to Casey several years ago.  She wasn’t always the social butterfly she is now.  She much preferred staying away from stores and restaurants and to only go to familiar places.  After she graduated and moved to the workshop every day, she began to open up to the idea of trying new places.  Now, it’s a struggle to make her understand that money doesn’t grow on trees (or in my purse – she thinks it just magically appears there) and she has to pick and choose what she does.  For the most part, she is doing awesome with that.

Maybe that’s all that’s happened with Rob.  He matured enough to handle stress and the idea of new places and people.  I hope that’s all it is.  I worry that someone was bothering him and that person is no longer near him.  I worry that he hasn’t felt well and I didn’t know it.  Don’t you love autism mom guilt?  I just need to let it go and enjoy the changes in him!

I’m excited about all the changes and I’m loving every minute of it!  I hope it continues and that he might learn to enjoy new things – or at least to try them with proper supports.  Both of them are going to a planetarium tomorrow – neither even know what it is (Casey thinks she is going to a star!) but he’s willing to try.  I can’t wait to hear how it goes!

I hope reading about the changes in Rob helps you remember that our kids are constantly changing and growing and maturing.  Your child may not like new things now, but maybe that will change.  They are learning more every day – even if we don’t see immediate results in the hard work we do with them.  Keep the faith – and keep trying, even when you don’t think it’s doing any good.  It is – I promise you!

 

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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 Mom and her Not so Little Weatherman

Autism Mom and her Not so Little Weatherman

It’s been a long week for us.  The crazy weather started Sunday as Rob’s autism anxiety grew steadily as the day went on.  I knew there was a possibility of a little snow Monday, but he knew better.  He began asking for his workshop about mid-afternoon and had worked himself up to being unable to stop his “storm song” by evening.  I should have known he knew something was coming.

Monday morning, I got up to find Rob already awake and asking for work.  He took his pills and his breakfast back to his room and I turned my phone on to see what was going on.  Luckily, I did this before I woke Casey up – their workshop was closed due to icy roads.  I told him it was closed and he was going to stay home with me that day.  He wasn’t pleased, but seemed more relaxed than he had the day before.

He went back to sleep and was happier when he got up.  He did keep telling me they were going to work Tuesday and I agreed with him that they would be going.  We had a pretty good day with him reminding me many times that he really wanted to go to work the next day.

Late in the day, I heard about another possible storm heading our way.  It wasn’t supposed to reach us till late in the week, so I didn’t think too much about it.  Rob didn’t seem too concerned, so I wasn’t either.  Until Wednesday, when I came home from work.

As I parked in the garage, I already heard his storm song.  I couldn’t believe he was already sensing the storm!  I checked my phone to see if something was closer than I thought, but there was nothing predicted until the end of the week.  The weathermen were predicting rain – or possibly 24″ of snow.  Rob told me snow.  And he continued to sing his storm song.

His song got louder as the evening went on, but he did go to sleep fairly quickly.  Thursday, his storm song was almost constant.  He laughed when I asked if we were going to get rain or a lot of snow.  (He has a very devilish giggle when he thinks I’m being especially goofy!)

Friday, it was still pouring rain, but the storm was coming.  All of the schools in our area were closing early and so was their workshop.  We were safely at home before the ice started, then the snow.  This morning, we had about 6″ of snow at our house, with drifts over a foot deep in some places.  He was right again.

When the kids were little, I had a coat rack in the dining room for their backpacks when they got home from school.  I always knew there was a snow day coming when Rob put his backpack in his room instead of the coat rack.  He was wrong once – school closed because of a flood, not snow.  He is much more reliable than any weatherman.

Rob is happily playing with his Legos now.  No storm songs and no squeals.  Casey is singing and says the snow is all done.  And I’m left wondering again just how sensitive they have to be to know when bad weather is coming.  I can’t imagine being able to feel the barometer dropping, though I suppose many of us do in one way or another.  Whether it’s a sinus headache or achy joints, we feel the changes.

I am so proud of the way the kids handle their sensitivities.  I know he gets loud and she shuts down, but I can’t imagine  what I would do.  When my patience is running out  – when I’ve heard the same darn phrase 100 times in the last ten minutes – I have to keep telling myself that they aren’t trying to annoy me.

They are simply trying to handle a pain that I can’t even imagine.  They are just communicating their needs in a way that I understand.  I have to stay calm or his anxiety will go even higher and he will get louder.  I remind myself that he can’t help it – that they are both coping the best they can, just like the rest of us.

I am constantly amazed that he knows exactly when rain/snow will start.  He walked into the dining room a few minutes ago and looked out the window.  I said that the snow was all done.  He looked at me and laughed – and it was snowing again.  I don’t know how many times he has shut the windows just a minute or two before the rain starts.

Can you imagine being that sensitive to things in our every day life?  To foods or textures or noises or odors?  Can you imagine feeling pain when you have to wear a certain type of clothing?  Or feeling sick when someone tries to force you to eat a gooey food?   It’s no wonder many people with autism hate crowds – imagine the smells and sounds!

My kids are stronger than I am.  The constant assault on my brain/body would be more than I could handle.  I know they don’t understand that not everyone feels/smells/hears like they do.  I’m sure they assume everyone is like them, but I wonder.  Do they ever watch us and wonder  what our lives are like?  Do they wonder why Mandy got to learn to drive and they didn’t?  Or why she lives in another house and they don’t?

For now, I’ll be happy that the storm song is quiet.  And I’ll be ready to listen when he starts singing it again.

 

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Autism Mom Wonders – Is he Hungry or is it OCD?

Is it Hunger or OCD?

Raise your hand if you have ever had a day when you simply couldn’t stop eating.  I know I have them and it’s nearly impossible to control the urge to eat all of the chips and snacks in the pantry.  So, if everyone has them, how do I know if Rob is hungry today or if he’s just obsessing about food because of his autism?

And as I wrote that paragraph, Casey walked in to the room carrying a pack of candy that was on my desk.  Maybe it’s the weather?

We have had an odd week of weather with well below zero wind chills.  Rob hates the wind, but luckily, it was just so cold the wind didn’t have to blow much to drop the temps.  The super moon was earlier in the week, too.  And they were home Monday for New Year’s Day.  So, it’s been an odd week.  But would that drive them to eat so much?

Sure – stress does that to some people.  I tend to avoid eating when I’m stressed, but I know lots of people eat when they are stressed.  Casey will always try to sneak food or drinks, so I’m sure today is just a typical day for her, but what about Rob?

I’m trying so hard to watch what they eat and limit overeating as much as possible.  Exercising isn’t as easy in the winter (though he is going to an indoor track with staff during the day!) so I’m really watching what they eat.  He ate breakfast as usual, but at lunch, he wanted more after he finished.  Later in the afternoon, he asked for his pills early (they have snacks with their pills) and then wanted more after he ate when he usually does.

At supper, it was like he couldn’t get full.  He ate supper, then wanted waffles.  Then fruit, then crackers, then candy.  I gave him a banana and some crackers, then told him no more.   As I was washing dishes, I thought about the days when my appetite seems endless.

So now I’m feeling bad.   What if the storm that’s heading our way is stressing him out (he is a little loud) and his appetite is increased.   Am I making it worse because I’m not letting him eat everything?  Right about now would be a great time for a verbal breakthrough!

I know physically, he can’t possibly be hungry, but still, I feel so guilty telling him no.  Every time he hears someone in the kitchen, he comes running to see what they are doing.  I don’t remember the last time he acted like this – maybe he really is hungry.  I’ve noticed he is losing a little weight – maybe he isn’t eating enough.  How in the world am I supposed to know what is autism and what is being a young man?

So I just offered him carrots and he took them.  He isn’t fixated on a certain food.  Ok – he is hungry.  I think.  He refused the celery, but I’ve never seen him eat that.  I’m going to wait and see what he does, for now.

But this does bring up the hardest part of autism and limited communication.  It is so difficult to know what is really going on with the kids.  When Casey has a meltdown, is she tired?  mad?  hungry?  When Rob is relentlessly looking for paperclips, is he anxious, bored or hungry?

He’s getting louder now. I think the approaching storm is the problem.  So now the question is – do I let him eat everything he wants or keep trying to redirect him?  I think a pile of cardboard would be a great idea right now!  Hopefully, that will help until it’s time for his shower.  He’s been asking about Hopewell tomorrow – I’m a little worried this storm is going to be worse than predicted.

I really hate now knowing what they need or want.  I know how lucky I am that they have any communication at all, but still, it would be so nice if he could just say he’s starving!  Or that he’s anxious or that a huge storm is coming.

How do you handle the communication problems?  Do you ever feel guilty when you don’t give the kids everything they ask for?  Any tips for telling the difference between stress-related eating and obsessive eating?

Stay warm and stay safe everyone!

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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?

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The Time Change, a Full Moon and Crazy Weather – An Autism Perfect Storm

An Autism Perfect Storm

Raise your hand if you know the full moon can do weird things to our kids with autism.  Now raise the other hand if the time change does the same.   And now, raise a foot if the barometer dropping messes them up, too.  And guess what?  I have the perfect storm for autism in my house this weekend!

I dread the time change every fall and spring.  I can’t imagine why anyone thinks messing with the clocks is a good idea but no one asked me.  My kids don’t have as terrible time as some others, but their sleeping/eating will be off for a few days.  And sleepy hungry kids and sleepy mom equals not much fun.  Within a few weeks, we’ll be back to whatever sense of normal we have.

The full moon is another issue.  Anyone who says a full moon doesn’t affect people doesn’t work in a school, hospital, as a first responder or live with someone with autism.  From a few days before the moon is full till a few days after (yeah, about a week!) their behaviors are off.

Rob might be more anxious and loud.  His search for pop tabs and paper clips becomes even more frantic as he tries to deal with the anxiety.  His “Long Black Train” phrase will be really loud and he’ll let out yells that could wake the dead.  (Sorry to our neighbors – I’ve got a few windows cracked between the rain bursts!)  He’ll be looking for stuff to shred and hoping the battery on his iPad lasts a long time.

Casey isn’t loud.  It’s hard to describe what she’s doing.  I’ll call it strenuous dancing.  By that I mean, her pacing figure 8’s in her room has become serious stomps and that girl is moving!  I hope that new carpet holds up as long as the manufacturer assured me it would!  She wants to go to Mandy’s house to Odd Lots to McDonalds to Dollar Tree.  Basically, anywhere but here with me.  She wants Tracie to come.

And now you add in the crazy weather.   Rob is pacing.  He’s been in the dining room 5 or 6 times to look out the window as I write this.  He is tense and humming.  His fairy dances are not as light-footed as usual.  I wish the storm would just get here and be done, but it appears it’s going to come and go all afternoon.

So – an autism perfect storm.  Rob is having a harder time than Casey, but he also recovers faster.  They both slept last night, so that’s a huge bonus and I’ve got my fingers crossed they will crash tonight, too.  We just ate lunch and Casey is already asking for supper.  Luckily, for once, I’ve actually thought ahead and had an answer to “supper?”

I don’t know how to help your little ones through an autism storm like a full moon and a time change.  So many things that cause stress and anxiety can be avoided, but unfortunately, neither of these can be.  Be ready with stress relievers – bouncing, swinging, ripping paper – whatever helps calm your child.

Relax your policy of how long they can watch their favorite movie.  If they are happy, you will be happy.  Pop in that movie and sit back.  These crazy days are not the best time to start teaching a new skill or change the routine anymore than needed.  Do whatever you need to keep things calm.

Stock up on what you need to stay relaxed.  I prefer ice cold coke and perhaps a snickers bar.  A soft blanket and a good book work wonders, too.  I also do yoga and workout as stress relief.  At times, I can get Casey to do yoga, too, and I keep Rob stocked in magazines.

When people tell you that the full moon, weather and time change can’t possibly have the affect you say it does, invite them to take your child for a day.  Or an afternoon.  Even an hour.  I guarantee they won’t say these things have no affect again.  Sometimes, the best way to stop “know it alls” is to show them the error in their thoughts.  Try to hold in the laughter when the kids are returned still going strong and the adult is exhausted.

On a much happier note – Casey  just told me that the time change for next spring will be March 11 and the month has two full moons (EEEEKKK!) but one is the 1st and the other the 31st.  So we have a year before these will happen again.  Good luck and deep breaths!

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Autism and the Difficulties in Speaking

Autism Verbal Difficulties

It happened again.  A day that could have been so much fun for Rob was ruined, simply because he couldn’t ask for help when he needed it.  As much as he is able to talk, there are times when his autism and the verbal difficulty he has flare up and he gets frustrated.

Rob and Casey were going swimming with friends from Hopewell – the workshop they attend every day.  I was already a little concerned because they were going to a different pool – one that was just a pool and had none of the activities that Rob really enjoys (mushroom fountains are his absolute love – all the water pouring directly on his head is heaven to him!)

He was so excited to think about going swimming.  I’m sure he was a little disappointed that it was a new pool, but he jumped right in the pool.  Staff told me he got right back out and soon began pacing and yelling.  Tory tried to help him, but he was unable to tell her what he wanted or needed.  He wouldn’t even talk to Casey.

I got a message that he was upset and decided to go get him.  I didn’t want his anxiety to ruin the fun for the others in the group.  When I got to him, he started asking “get the van?  get the van?” so I knew his anxiety was sky high and not likely to come down any time soon.  He didn’t want to leave with me, but he didn’t want to go in the water, either.  I think he probably did want to swim, but since he wouldn’t, I told him to grab his stuff and we would just go home.

As we were driving home, Rob had his hand laying on the open window of the car.  That’s the only way I knew what really happened to him at the pool.  I saw the bee sting.  When I could pull over, I asked him to show me his hand.  “Let me see!  Let me see!” he said and held his hand out to me.  When Rob is sick or hurting, that is how he asks for help.

The stinger was out, but the hand was red and slightly swollen.  I noticed he sounded congested when I picked up him, but thought he was having sinus issues.  Nope – he was having a reaction to the sting.  He and Mandy used to be severely allergic to insects, but he hadn’t had a reaction in a long time.  He had gotten stung at the pool and he simply couldn’t tell Tory he needed help.

Instead, the pain got him worked up and he paced.  And he yelled.  And his anxiety grew.  All because of autism and verbal difficulty.  Can you imagine being in pain and not being able to tell anyone?  Not being able to ask for help?  Imagine the frustration and anxiety you would feel.  And I hated autism again for ruining his fun.

Had he been with Mandy or I, he probably would have said “Let me see” and we would have known something was wrong.  He just won’t (or can’t) say that to others.  So, because of autism, he suffered.  And I thought about the other times he was unable to ask for help when he needed it.  When he jumped down the steps and broke his collar bone.  When his foot issues start to flare up (if I can get ibuprofen in him early enough, the pain doesn’t get too bad).  When his head hurts.  And I think it just isn’t fair!

I know – life isn’t fair.  But it’s so hard to watch someone you love in pain because of verbal difficulties.  He can say so much of what he needs, but not always.  Sometimes, he just yells and gets anxious.  Sometimes, he cries.  Sometimes, Casey screams.  And I’m left trying to read their minds and find the issue.

Autism has taught me so much.  I am a better person for loving kids with autism.  I have met so many amazing people and learned about myself.  Autism has also taken things from me.  For me, the worse thing taken is the kids being unable to ask for help.  When I do finally realize the problem, the guilt comes.

Why didn’t I figure that out quicker?  How could I not realize they are in pain?   My parents tell me that’s crazy – it’s impossible for me to know everything about them.  My head understands that – my heart feels the guilt.  And you know guilt is harder to get rid of.

I’ve learned to “read” them – just as every other autism parents has learned.  I can tell by their eyes if something is wrong, if they are sick, if a tantrum is coming.  I can tell when they are happy or sad or mad.  I can see Rob’s anxiety and when Casey is getting overwhelmed.  I know all of this, but I still feel guilt when I don’t know it soon enough.

Thankfully, Rob’s hand is fine.  While he did cough a little, he didn’t have a bad reaction to the sting.  He will probably never go back to that pool as he will always associate it with a bee sting.  But, that’s ok.  We’ll go somewhere else.  Casey will be happy going anywhere.

We’ll always struggle with verbal difficulties.  I will be thankful for what they are able to tell me.  I will keep asking questions and hope to learn more about each of them.  We’ll keep hugging and laughing.  I’ll read stories to them and enjoy the giggles when Elmo saves the day again.  That’s what parents do.

And I’ll try to push the guilt away when I don’t know what’s wrong.  I’ll try to remember the good things about autism when I’m so sick of it I could scream.  Try to do the same.  Life isn’t always about bee stings and ruined pool trips.  Sometimes, it’s bear hugs and twinkling eyes and McDonald’s fries.

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Anxiety in Autism

Autism Anxiety

Anxiety in autism is very common.  Rob is especially prone to anxious moments while Casey doesn’t.  When he gets anxious, he gets loud.  And I mean a loud that you can’t understand unless you live with it.  I love him more than he knows, but sometimes, it takes all I have not to scream in my pillow.

Poor Rob.  I know he can’t help it.  He is really sensitive to new weather patterns and a drop in the barometer is likely to bring a lot of stress to him.  We joke that he is  better at predicting the weather than anyone who uses a computer model.  When the kids were in school, we had a small coat rack in the dining room for their backpacks.  Through the week, the backpacks hung there every night.  On the weekend, they hung in their bedrooms.

We always knew when a snowstorm was coming because Rob would put his backpack in his room instead of on the coat rack when he knew they would have a snow day the next day.  He was wrong only once in his entire school experience – and that was a flood, not a storm.  We still have people who text or message me asking what Rob says about the weather.

Summer storms are no different.  If Rob gets loud, or keeps looking at the dining room window, I know something is coming.  More than once, he has asked to shut the windows and I’ll tell him no, only to have the rain start within minutes.  I don’t know how he does it – only that he feels it coming.  Rain or snow – it doesn’t matter.

This week, his anxiety reached a higher level when our van needed work done on it.  When he gets anxious, he can repeat things.  And when I say repeat, I mean he may say the same thing 15 – 20 times a minute.  “Get the van” became his phrase and it continued.   Our conversation was repeated over and over.  “Get the van.” “It’s broke, Rob.  We’ll get it later.” “Get the van.” “Later, Rob.” “Get the van.” “Later, Rob, it’s broke.” “Get the van.” “Please, Rob, listen to me.  We’ll get it later.” “Get the van.” “No, Rob.” “Get the van.” “Uncle Jeff has it.” Silence.  Thank you, God – and please remind me to use Uncle Jeff more!

I can’t talk him out of his anxiety.  I can’t make him forget.  I know they both need their routines to make sense of a world that doesn’t make sense most of the time.  I don’t want to change the kids, but there are days when it drives me crazy.  Moms aren’t supposed to admit that, but who cares?  Everyone has days like that.

To help with his anxiety, I offer what I can.  Ripping magazines and cardboard helps Rob calm down (deep pressure on his hands) and cutting clay (again, deep pressure) so I make sure to keep supplies on hand.   He sleeps with so many blankets, it’s hard to find him at times, but the blankets offer pressure.  Rob also takes medications to help relieve his anxiety.

He will also look for things to break to give him the deep pressure he wants.  Pop can tabs are a favorite target, as are pencils to snap and paper clips to break.  It’s my job to find appropriate things to give him the deep pressure he so desperately needs.

He has been going to aquatic therapy once a week and thoroughly enjoys that.  He has a swing to relax in.  He gets the tightest hugs I can give him.  The list of what we’ve tried is long – chewy candy, gum, ankle or wrist weights to name a few.  Every day, I try to think of something else.  Luckily, everyone around us is thinking, too, and nothing is too silly to try.

Anxiety in autism is hard for our kids, but maybe even more for us.  As parents, we want nothing more than to help our children be happy and it isn’t easy to admit we are out of ideas.  Something important to remember (and I have to remind myself of this!) is that our kids are often super-sensitive to the moods of people around us.  The more anxious we are to help their anxiety, the more anxious they may become.

As hard as it is, try to relax.  Yes, your child will have hard days.  But – you need to be ready to give the hugs or the pats on the head or whatever it is that your child craves from you.  Relax and remember that the tough days always pass and easier ones come.

Smile and hug your family!

Jen