Tag: autism anxiety

Posted on

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!

Posted on

Autism and the Different Therapies we Tried

Autism and Different Therapies

A few weeks ago, I mentioned in one of my posts that Casey and Rob had taken Equine (Horseback) therapy and I had a few questions about how that helped the kids and what else we had tried.

Casey and Rob both started with speech therapy early.  I drove Casey to a city about 35 miles from us twice a week when she was 3 to get speech therapy.  It was the closest place for us.  Once she began preschool with our local school district, she got therapy there and once a week the therapist came to our house.  Not only was this lady an amazing speech therapist, but she had some experience with sensory issues and taught me a few tricks that I still use today with the kids.  (Thanks, Connie!)

Rob started getting speech at home, along with a preschool teacher who visited.  Both were once a week when he just turned 3.  (Mandy was still in the preschool class he would be starting, so we thought it best for her to finish the year and have him start the following fall.  With his late August birthday, he would still have two years of preschool.)

Casey continued with speech therapy when she started Kindergarten and was seeing the therapist twice a week and for group time.  Our local hospital finally had a speech clinic by this time, so I took them both every week for one on one at the clinic.  This lasted about a year, until the hospital lost the therapist.  Several years later, I would again be taking them to that clinic for speech.

Rob went to our county board of DD Kindergarten instead of going to our local school district.  The teacher he was supposed to have was one that wasn’t good for Casey and I refused to let her near him.  While he was in Kindergarten, he started Occupational therapy, along with speech.  When the school district hired an OT, Casey started seeing her, too.  (OT can be a wonderful tool to help with sensory issues!  Neither Casey or Rob had many issues with fine motor skills, but the sensory play they taught helped so much!  Thanks, Deena, Steve, and Brooke!)

We discovered that many of Casey’s meltdowns were from sensory issues.  She was simply overwhelmed by sounds and couldn’t help herself.  She didn’t have the words to tell me what was wrong, so she screamed and cried.  (Don’t misunderstand – some of her meltdowns were schedule changes, too, or my changing the routine that she so rigidly followed!)  I learned that piles and piles of blankets were an absolute necessity for both kids to be able to calm down enough to even think about sleeping.  (We still had sleep issues, but screaming wasn’t one of them – finally!)

Rob needed deep pressure to stay calm and control his anxiety.  He was terrified of loud noises (School bathrooms were a nightmare for him!) and he wore ear protection for most of his elementary years.  Not only did the head set block (he wore a set of hunter’s ear guards) the noise, but it added deep pressure to his head and he didn’t feel the need to squeeze his jaw as often.  He wore a weighted vest when he was at school and also had a weighted lap blanket for days he needed even more.

It was suggested that a swing may help him even more and the school purchased a large platform swing for his classroom.  Beth (his one on one) figured out that he could do math and spelling quickly while he was swinging so she worked with him while he laid on the swing.  Spelling was always easy for him, but although he could do the math, it had little interest to him.

In 2003 – 2004 (I can’t remember, exactly!) we found out that an equine therapy group had been started.  I knew the couple who started it and decided to take the kids one evening to see what it was all about.  I knew Casey wouldn’t like it, as she was scared to death of animals, but part of the therapy was petting and brushing your horse and I thought she might get close enough to touch one.  I also knew Rob wouldn’t be a problem – my little daredevil would try anything.

I was shocked when Casey climbed into the saddle of the horse before she was even asked if she wanted to ride!   There was a person walking on each side of the horse and another one to lead.  She sat up so tall and looked like she had been riding her entire life.  Rob jumped on a horse, too, and soon gave the volunteers heart attacks as he leaned too far one way and then the other so he could watch the horse’s feet.  I assured them he wouldn’t fall, but it took a few weeks before they believed me.

During their therapy, they had to complete different games from their horse’s back.  They threw basketballs, tossed beanbags and rings and had to stretch to ring bells.  With the beanbags, the holes were different shapes and colors and they were told which color/shape to aim for.  Rob had a deadly aim, even as he barely looked at the board.  I soon learned that while they were on their horses, they could do things that they couldn’t do normally.  They both knew their right from their left hands (After years of doing this on horses, they still can’t tell me when they aren’t on one.  Or they simply don’t care!  🙂  )

They could answer simple questions and practice their spelling words.  We practiced math facts – anything to keep drilling those lessons into their heads.  (and strangely enough, the spelling and math stuck with them when they weren’t on their horses – it seems only right/left didn’t matter).  Because there was a large group riding, the evening also became something of a social event for me.  I could talk to other parents of kids with special needs as we took turns leading horses or walking with the kids.  It was great knowing that Rob’s squeals or Casey’s obsession with socks wouldn’t be an issue!  (By the way – Casey’s horse was named Socks – how appropriate is that?)

After more than 12 years of riding, we stopped horse therapy for different reasons.  I had developed a severe allergy to the horses and could no longer be near enough to help (even with medication, there were times I could barely drive home) and the kids seemed to be losing interest in it.  It had become something that “had” to be done instead of something we all enjoyed.  If you have equine therapy close to you, please consider trying it.  It was a great experience for us.

Rob takes aquatic therapy every two weeks at the hospital to help with his anxiety and for something he loves to do.  Insurance will only pay for 26 visits a year, but we are both thrilled with that.  He loves going and he loves his therapist (Thanks, Erin!) and is always excited to tell me what he did that day.  I did have to warn her that he would sink to the bottom and sit and not to worry about him, but it did still freak them out the first few times he did it.  (It seems he will never come back up as he sits down there and grins up at you!)

There are so many therapies available to help people with autism, now.  I do the same thing with therapies that I do with meds.  I think about what good can happen, what side-effects can happen and the expense.  And I ask the kids if they want to try. Sometimes, the answer is no, and that’s fine.  I wait a few months and ask again.

ABA became popular when my kids were a little older and there was no one in our state able to provide those services.  When I taught preschoolers with autism, we used the ABLLS system and I did a lot of that with Casey and Rob, even though they were much older.  They both enjoyed the little games and I’m sure it helped some.

As with anything else concerning your child with autism, follow your gut instincts when considering a new therapy.  You will know quickly if something is working (or not working!) for your child.  Find something fun with a great therapist.  And if you would like to hear more about our experiences with the therapies we tried, send me a message!  🙂

 

Posted on

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!

Posted on

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.

 

Posted on

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!

 

Posted on

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!

Posted on

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.

 

Posted on

Autism – How to Find the Perfect Christmas Gifts

Autism - How to Find the Perfect Gift

Over the last week, I’ve read several posts by parents or grandparents of people with autism wondering about Christmas gifts for their loved ones.  I’ll admit – I don’t have the perfect answer, as I struggle with Rob every time I want to buy him a gift.

The conversation goes something like this.  “Rob, tell me what you want for Christmas.” “The presents.” “What do you want in the presents?” “A present.” “But, what kind of present?” “A present.” “A CD?” “CD.” “New Legos?” “New Legos.” “Crayons?” “Crayons.”  And on and on.

Casey, on the other hand, has been able to tell me what she wants for several years.  She is a very detailed list maker.  This year, an orange t-shirt, a blue turtleneck, jeans, Elmo book and “da biggest Grover” top her list.  And, she tells everyone different things to be sure she doesn’t get duplicates.  She is a planner, that’s for sure.

So, I struggle with Rob.  I try to think of what he is interested in, but right now, paper clips and cardboard are the top of his list.  He loves the original Mighty Morphin Power Rangers and the Wizard of Oz.  He doesn’t care about clothes (unless I want him to wear new ones!).  Dr. Seuss books are always a hit, but he has his favorites, so why buy more?

He doesn’t watch DVD’s or TV.  He doesn’t listen to CDs anymore, as he uses his iPad.  He plays with Legos and loves small wooden trains.  He doesn’t wear his hats anymore and he has a huge pile of soft blankets.  He collects magazines, but I can’t figure out which ones he will save and which ones he will rip up.

He loves street signs and bubble wrap and popsicle sticks.  He loves McDonalds and fruit and frozen pizza.  I’m sure you are beginning to see my dilemma.  The funny thing is, he loves to open presents.  He used to open one and be done, but now, he rips through them and enjoys it.  So I want him to have things he enjoys in those packages.

Maybe he just likes the surprise of opening the gifts.  I remember one birthday, he shared he wanted Ryan and Kelsey and Kenzie to come over.  Among the gifts were a jar of pickles and a huge pile of crayons and cardboard.  He was the happiest little guy in the world that night.  Ryan’s parents told me they tried to talk Ryan out of buying pickles for Rob, but he giggled when he opened that gift because he was so excited.

One Christmas, he got a Cat in the Hat hat and Hulk hands and insisted on wearing both the rest of the day.  That’s the excitement I want to bring to both of them on Christmas.  Something that will bring smiles and giggles and that they don’t want to put down.

That’s why, a long time ago, I decided that what they liked was what they were going to get, whether it was “age-appropriate” or not.  If Casey wants Sesame Street, she’s going to get Sesame Street.  If Rob wants a toddler train set, that’s exactly what he is going to get.  I’m tired of people saying they don’t think it’s right for adults to play with toys.

I’ve heard parents say they don’t want to feed their child’s obsession with toys.  What about the parent’s hobbies?  How many of them collect things?  Or have a hobby they obsess over?  Golf, TV shows, books.  They enjoy those hobbies, so why can’t our kids just enjoy their hobbies?  Why do people insist on calling their likes “obsessions” and want to change it?  A diagnosis of autism doesn’t change the fact they are a person with their own personality.

Rob got a stop sign and a railroad sign for his birthday.  He was happy to hang them in his room.  His helmet from Halloween has been added to his Wizard of Oz collection.  He may get some odd things for gifts, but he is happy and isn’t that what we want for our kids?

When you shop for gifts for your children, stop worrying about what other people think.  When you buy gifts for “typical” people in your life, you buy what they would enjoy, even if you don’t care for it.  Why can’t buying gifts for your kids be just like that?  If your child loves baby rattles, who is it hurting to give them rattles?  The only thing you should worry about is how hard your child will laugh as they open their gifts.

Sometimes, people with autism don’t care about getting gifts at all and that’s ok.  Buy a few things for them, just in case this is the year they want to join in, but don’t stress over it.  Christmas is a time for peace and joy, not trying to force someone to enjoy an activity.  I know all about the guilt of trying to spend the same amount on each child.   I do, but Rob and Casey’s gifts might seem odd to others.  Again, I don’t care.  I want to see joy on their faces whether it’s a box of paperclips for Rob, the newest Sesame Street toy for Casey, a craft item for Mandy or a car part for Cory.

I don’t know what it is about Christmas and other special days that causes autism parents to stress over things we don’t think about it all any other time of the year.  Maybe it’s that daydream of the perfect holiday and we want everyone to enjoy it like we see in movies.  Perfect holidays are different in every house.  Every family has their own version of happy days.

So, this year, buy the box of paper clips or socks or baby doll or race car your loved one would enjoy and don’t worry about what others think.  Buy (or don’t buy) and let the stress of the perfect Merry Christmas go.  Perfect and normal isn’t nearly as much fun as watching someone’s eyes light up and hearing their giggles as they open their gifts.

Posted on

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?

Posted on

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!