Tag: sensory issues

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Autism and Fun at the Fair

Autism and Fun at the Fair

Finally! The day Casey has been waiting for for two years! They got to go to our county fair Friday and ride till they dropped. She was so upset last year when the fair was canceled and has been asking about this year since last fall. Even Thursday evening, she wanted to be sure it was still happening.

We usually go on Sunday morning and beat the crowd, but with the rain predicted today, I surprised them and we went Friday. It was the perfect day – not many people and a beautiful day to be outside. We had a few minor bumps (the rides didn’t open when I was told they would so we had to kill an hour wandering around – Rob’s least favorite thing to do!)

He has two reasons to go to the fair. Ride until I say we have to leave and to get some French fries. He doesn’t care about other “fair” food (he will eat some of it, but he doesn’t go to the fair for anything but to ride!) He couldn’t tell me, but I know he was disappointed that neither of his two favorite rides were there. He hates heights, so that eliminated two other rides (though I can’t figure out why it’s okay to be high if you are being spun like a top!) so really there are only four rides that he enjoys. That’s okay – he got spun until I thought I would get sick.

Yep – I spent my time safely on the ground, trying to remember if I ever really liked rides. I don’t mind some of them, but I hate heights and spinning makes me sick. But – as I watched them, I couldn’t help but think of the way it used to be taking them to the fair. Casey never darted away at the fair, but because she did so often in other places, I was scared to death she would there, too. Rob darted away. He hated crowds and noise, but he loved the rides and he was fast – so, so fast.

It’s crazy. I don’t know why I did this, but when they were little, we spent hours there. So many hours…. and why? Part of it was Mandy, of course. She liked more about the fair than just the rides. And, for the most part, Casey and Rob would take breaks from rides to walk around a while. Rob has just matured to the point that he knows what he wants and truly sees no reason to be there if it’s not to ride. 🙂 I finally realized it was fine to go home when they needed to go. I could always take Mandy back to have fun with her friends.

Casey likes to ride, but she’ll look around, too. Not because she is very interested in it, but because that’s what she has decided you are “supposed” to do, but only with certain people and at certain times. When she is with Rob and me, rides are all that’s important. The crowds and noise start bothering them and we leave. I can see the signals of overload. Their eyes look dull instead of happy. They are shutting down. Time to go.

For the last several years, Rob isn’t ready to stop riding when she is. Usually, we compromise with two more rides, then fries and home and he’s okay with that. Casey is a little more able to know when she’s reaching her limit and wants to leave. He is just so happy about the rides and the sensory input he gets, it takes him a little longer to be done.

I am so proud of how well they did. They both stayed right with me and waited patiently for their turn to get on rides. I was even able to have them sit at a picnic table while I walked about 15 feet away to get their drinks. When they were little, I never dreamed that day would come. When they couldn’t wait in lines…. when they didn’t want to leave…. when they would run from me. It’s all so different now. Remember us when you are feeling like things will never change. They do!

Rob even asked for the fair again yesterday. The only thing he asks about is Hopewell – for him to ask to go to the fair again is huge to me. The weather today is preventing a return trip, but hopefully, they’ll get there one evening this week and enjoy more spinning and swooping.

Casey loves the fair for many reasons, but mostly, it’s because that’s what you are supposed to do the first Sunday of October. She does enjoy the rides, but again, she enjoys it because she loves going anywhere. For Rob, the fair is different. He craves the sensory input from the rides. All of that spinning is calming to him. It feeds his proprioceptive needs unlike anything else. As fast as I can spin him in a swing, it’s nothing compared to those rides. He loves the way those spins make him feel. I keep telling our neighbor I’m going to purchase one of those giant swinging boats for our backyards. Rob needs that in ways I can’t understand. I only know how different he is after a few hours of it. Calm. Happy. Relaxed. I love seeing him like that.

If you are planning a day out with your child, I highly suggest you take a picture of your child with your phone as soon as you get there in case he/she does dart away, you will have a picture to show people to help find them. Also, you can safety pin a tag on the back of your child’s shirt with your phone number on it (Many kids won’t like this – you may have to get creative about where you put a tag) You can also purchase necklaces or bracelets, if your child will wear them, before you go with vital information.

And I love spending a day like this with them. It’s a dream I wasn’t sure would ever happen. I don’t take days like this for granted. Autism taught me that – take nothing for granted and enjoy it all! 🙂

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Autism and the Sense of Taste

Autism and the Sense of Taste

Ever since she was small, Casey has been able to eat weird combinations of foods.  One day when she was about 7, she ate almost half a pound of raw hamburger.  I was thawing it and she got a spoon and ate all she could.  I’ll be honest – I almost threw up when I found her. 

She would grab a spoon and a container of chip dip and eat it like pudding.  She ate anything and everything.  Now, I know that her sense of taste is definitely hypo-sensitive.  It’s only been in the last few years I have found a few things that she doesn’t like. She won’t eat pickles of any type.

She doesn’t care for sliced tomatoes but loves the cherry ones. She is not a fan of chocolate and will only eat a few types of chocolate candy. She doesn’t like chocolate ice cream, pudding or milkshakes.

Last year, she discovered salt and pepper. She had often put salt on a few things, but now… Now…. It’s a battle to control her salt usage. She covers food with pepper. I’ve even switched the salt and pepper shakers so very little salt comes out. This over-seasoning is more proof that her sense of taste is definitely hypo-sensitive.

Rob only puts salt on fries and chicken nuggets. He ate almost everything as a little guy. I think it was just before puberty that his sense of taste changed. He ate pizza, spaghetti, chili – and then he didn’t. It wasn’t a gradual process. He just stopped. I don’t know if his anxiety increased at puberty and caused more sensory issues or if the sensory issues caused his anxiety.

Either way, he became a picky eater. For years, he refused to try anything new and nothing gooey could be on his plate. Luckily, he ate most meats and always his fruits and veggies.

He is willing to try new foods now – even gooey ones. It doesn’t always go well as I’ve seen him gag on the tiniest bite, but he does try. I never force him to eat anything, though – that’s a recipe for disaster and I sincerely hope you never let anyone force your child to eat. Rob has had that happen to him. He remembers that.

Rob’s issues with foods aren’t necessarily caused by having a hyper-sensitive sense of taste. His are more likely the texture of the food and not the taste, or lack of it. He does tend to stick with foods that are more bland so there may be certain things that he tastes more strongly.

He tastes sour things more strongly than she does and absolutely cannot stand to taste anything bitter. Bitter doesn’t appear to bother her as she chews medicines with no issues. She loves sour foods – foods that you and I wouldn’t be able to eat, she has no reaction to.

If you want to discover how your child’s sense of taste is affected, start keeping a list of what he or she will eat – what foods they avoid – and if they like to add salt to everything. Once you start comparing the foods on your list, I’m sure you will find whether your child is hyper (too sensitive) or hypo (not sensitive enough) to each taste – salty, sweet, sour and bitter. This might give you an idea of what type of foods to offer your child and what to stay away from.

Honestly, it never occurred to me until recently how strongly Casey’s sense of taste is affected. As I wrote this, I kept thinking of other foods that prove just how little she tastes. She is a good eater (and tends to overeat, thanks to one of her meds) and I just never stopped to think about how she eats. I always thought Rob was the sense of taste that bothered him, but after really thinking about it, Casey is the one with more issues. How I never noticed that is beyond me.

Hopefully, once you see a pattern in how your child tastes, you can come up with a plan to help them experiment with new foods. Just remember, taste is also affected by smell, touch and sight, so you may have to do more digging into those senses before you really know what is going on with your child.

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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!  🙂

 

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Autism and Spinning – A Day at the County Fair!

Autism and Spinning - A Day at the County Fair

 

I can’t believe that it’s fair time here already and that tomorrow, “September will be all done!” as Casey says. I’ll admit it – I am usually excited about taking them to the fair, but this morning, I just wasn’t into it. They were excited – I was dragging and grumpy.

It’s a beautiful day here. Amazing blue sky and perfect temperature to wander around the fairgrounds. When we left home, they were both wearing jackets, but I told Rob he better not wear one (I didn’t want to carry it all day!). As soon as he saw Casey had hers, he had to have his, too. When we parked, I tried to convince him to leave it in the car, but nope – Casey still had hers on, so he had to be like big sis. We walked across the parking lot and I told him to take it off if he got too hot. And he did. So back to the car we went to drop it off. And I got grumpier.

I also knew that the two rides that Rob loves more than anything weren’t at the fair this year and I had been worried all night how he would react when the big boat and the other platform swing wasn’t there. Those rides calm him down so much – I just knew he would be anxious when he didn’t see them.

And, of course, he proved me wrong again. He never even asked for them. They both carefully looked at their choices of rides (these are big decisions, you know!) and started taking turns choosing what to ride next. When Casey chose the Super Loop, i knew he wouldn’t ride it – he absolutely hates any ride that goes upside down. She got in line – and he followed. I pointed at the ride and asked if he wanted to ride. “Yes, pease.” So… I backed away, knowing this was a bad idea.

They were the only two on it. I couldn’t watch as it began it’s slow circle up and back – until they were upside down and it continually went in the circle. Ugh! I snapped a picture, then couldn’t watch anymore. I wasn’t sure if Rob would gt sick on the ride or after. Or if he would be too scared to climb off of it.

You guessed it. He loved the darn thing – couldn’t wait to get back on it again. I’m not sure how many times they rode it. I thought maybe he would follow Casey onto every ride, but nope – the Drop Zone was a definite NO. (It pulls riders up about 20 feet and drops them) He didn’t even say his usual “yes, pease, no fanks.” It was just NO. So she rode it a few times on her own and they went on having fun together.

We did have one rough time. They needed to go to the bathroom and instead of going to the one where the entrances of the men’s and women’s are together (and it’s small – I would know if anyone was in there with him), they ran the other way and he darted into the huge men’s bathroom before I could stop him – and she started going to the women’s entrance – at the other side of this 30′ building. I panicked – how was I going to be in two places at once? So I as I was running back to the men’s entrance, I was pulling out my phone to call Mandy (she was working in a close building) so she could come and wait for Casey while I got Rob.

Somehow, he managed to get in and out in of the bathroom in the few seconds it took me to get Casey to the other bathroom. He was standing on the sidewalk, looking more than a little lost. I’m always where he can easily see me when they come out of the bathroom or off the rides. It must have scared him a little because as soon as he saw me, he leaned his forehead to mine. I felt so bad! More rides cheered him up, though.

The more the ride spun, the happier they were. Big circles, little circles, up and down circles, bouncy circles. They loved it all. I had a hard time even watching some of the spinning they were doing! I’m so glad they love it as much as they do – and that the spinning helps their sensory issues. Some kids get more wired after spinning, but both of them calm down.

If you have a child who loves to spin, try putting them in a swing and twisting it around and around and letting go. Or you can buy a scooter board (basically a piece of plywood with casters on each corner) and have them sit as you spin them around. Or a Sit and Spin toy works wonders, too. The whole point is to find something safe and appropriate for them to use to get what their body needs, or they will go looking for it – and you may not like what they do!

When they were smaller, going to the fair was hard. Rob and Casey both had a tendency to run off and in crowds, it’s terrifying to me. I kept a tight grip on them. Today, when we first got to the fair, they were both walking beside me and looking around. By the end of the day, they were holding onto me in their typical ways – Rob holding my right hand and Casey holding my left elbow.

That’s how I knew it was time to go. When the anxiety and stress of the crowds start getting to them, they seek comfort and security. So we did our usual – one more ride, a stop at our favorite French fry stand and headed home. As much as they both love being there, when it gets too crowded, they are done.

I hope that each of you gets to experience amazing, fun family days like we did today. It didn’t take long watching them have fun for my grumpiness to go away. It’s just awesome to me that they are both able to enjoy an activity like this together. As they got on and off rides, they watched out for each other and waited, so they were always together – just like close-knit siblings. I had tears in my eyes once or twice watching one help the other with buckles or belts as they settled in for a ride.

It’s days like today that remind me autism isn’t always so bad. Yeah, we have rough days and nights at times, but – I have also have three kids (and Cory!) who are very close and love each other more than anything. Isn’t that really what every parents wants?

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Autism Times Two – Who is Easier?

Autism Times Two - Who is Easier?

Last week, someone wondered whether Casey or Rob was easier to live with.  As if autism could be classified into easy or difficult!  But, the question did  make me think  – and here’s the answer.  All three kids had their quirks growing up that made me want to pull my hair out at times!  None of them were more difficult than the others – just different.

When they were little, Casey had more behaviors than Rob did.  Her  meltdowns were terrible to see and to live with.  Now, I know that she was having major sensory issues and that she couldn’t handle changes in her routine easily.  At the time, I just wanted someone to help her – or give us all ear plugs.  Casey also liked to dart away when we went places.  She even left the school playground a few times.

They were both a challenge to keep safe.  Neither had fears of anything – heights, water, streets – who cares?  Nothing can hurt them, right?  He didn’t run away as much in stores because he wanted to ride in the carts for much longer than he should have.  He simply felt safer in them – his sensory issues were beginning to show up.  I remember a day in Wal-Mart when two boys kept staring at him and making comments.  Their mom didn’t hear them, but I did.

Unfortunately for those boys, I was not in a good mood.  It had been a rough few days with little sleep and I was not in a forgiving mood.  As we passed them in the aisle, one made another comment about the “big baby” in the cart and I lost it.  I said excuse me to the mom and then proceeded to tell those boys – so she could hear every word – just why he was in the cart.

I said he had autism and the lights and noises in the store were painful and scary to him.  And that he knew they were making fun of him and that was causing him even more pain and anxiety.  I told them if they wanted to grow up to be mean monsters, they were on the right track.  Their mom was so embarrassed that they had said anything.

I’ll give mom a lot of credit – she clearly stated she would not put up with that and made the boys apologize to both Rob and me.  Then she did, too.  She was nearly crying that her sons had acted that way.  I bet they didn’t anymore.

Anyway, I think Rob’s lack of behaviors were a big reason that he wasn’t diagnosed earlier than he was.  He was simply a thrill seeking, happy, quiet little guy.  He communicated his wants without saying a lot and went anywhere we wanted to go without fuss.

As they got older, Casey’s behaviors went away for the most part.  She learned that changes in her routine were not the end of the world (and calendars helped with that so much!) and that screaming didn’t help her feel better. (Not that she doesn’t still let out a scream once in a while, but thankfully, the full blown meltdowns are extremely rare…knock on wood!  🙂  )  She has always been more self-confident in herself.  She firmly believes she is who she is and if you don’t like it, tough.  She doesn’t seem to care about having friends.  She has us and that’s enough for her.

Rob, however, wants people to like him.  He wanted friends when he was little and thankfully, he had a great group of little boys who accepted him as he was and made sure he always had someone to play with at recess or someone to sit with at lunchtime.  He gets upset if he thinks someone is angry with him and his anxiety goes through the roof.

He doesn’t seem to care as much about having friends, now.  He knows who likes him and he’s happy with that.  He goes places with groups from the workshop and will tell me who is his friend from there.

Each of them have their own difficulties in life.  His anxiety and sensory issues (including weather changes) make it harder to take him new places or get him to try new things.  She is more demanding than he is and more likely to get upset if something doesn’t go the way she wants.  He rarely gets angry – she rarely gets her feelings hurt.

His sensory issues are harder on him than hers are on her.  She plugs her ears and is good to go.  He can’t eat certain textures without gagging, or wear certain  materials.  He gets hot easily – she is usually cold, eats almost anything and has more clothes than anyone needs.

It always amazes me what people will ask.  I’m here to spread awareness of autism and other special needs, but some questions are just crazy!  Would you ask someone with typical kids who was the most difficult of their children?  Probably not, but because they have autism, it’s okay to ask.  I’m actually okay with the question – it just struck me funny for one simple reason.

When I get asked about living with autism or their behaviors – anything like that – I always have to laugh to myself.  I would much prefer my life to many others!   I’m excited when my kids talk back to me (they talked appropriately – YES!).  When my kids have behaviors, it’s not them being brats (like so many “typical” kids!), it’s sensory issues.  (usually – there are times when they are just being turkeys!  🙂  )  I know where my kids are – no late night worrying (well, not about where they are – there are always late night worries!), no driving or insurance.

Autism doesn’t make one child more difficult than another.  Just like everyone else, they all have their own issues to deal with (sometimes, I think people forget that everyone has issues – not just those with special needs!) and some issues are more demanding than others.  Casey, Mandy and Rob all brought equal amounts of stress and love, sleepless nights and happy hugs, smiles and tears to our family.  They are all amazing and I wouldn’t want to change any of them!

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Autism – Never Give Up, Even When you are Exhausted!

Autism - Never Give Up!

Today, I saw more proof that no one should ever give up hope when their child has autism.  While I would never say that every child with autism will progress in the same way, there are always improvements – sometimes, so tiny that you can barely see them, but they do happen.  And maybe they won’t happen in the time frame you want, but things can change quickly.

Casey wanted to go to the Memorial day parade in our town this morning.  I was going to cover it for our local paper, so it was no big deal to go.  Rob said “no fanks” when I asked if he wanted to go.  He went last year and watched it, but I can’t say he really enjoyed it.  Besides, it was hot today!  So he went to Grandma and Grandpa’s house and Casey came with me.

As soon as we sat our chairs down, she started giggling and rocking.  She was so excited!  It made me remember her as a little girl and how impossible parades were.  Mandy always wanted to go and Rob would sit beside her and watch, but Casey wouldn’t sit.  And if I tried to hold her on  my lap, she yelled and screamed.  I couldn’t trust her to sit by herself at all because she would dart away – into the street or to grab someone’s drink/food.  We didn’t go to many parades.

When the parade got to us today, I stood up to take pictures.  As the American flag made its way to us, I turned to tell her to stand up – and she already was!  With her hand over her heart!  I looked around to see who she might be mimicking, but there wasn’t anyone with their hand over their heart.  I couldn’t help it – I got choked up.  She remembered the many times I told her to stand for the flag!

We settled down to watch the rest of the parade and she laughed her way through it.  Even when candy was thrown from vehicles, she never made an effort to get up and get it.  When the parade was over, we walked to the Court Square for the ceremony.  Here was where I was concerned.  I knew she would probably sit for a little while, but how quietly, I didn’t know.  She might add her own sound effects to the ceremony.  Or everyone would hear her announce she had to go potty or she was hungry.

Instead, when the announcer asked people to stand for the invocation, she was on her feet, her hands clasped under her chin and her head bowed.  (I had no idea she even knew what invocation meant – we always say pray.)  When the prayer was over, she loudly said amen and grinned at me.  When the National Anthem started, she spun around to look at the flag (still standing) and started singing loudly.  She and I were among the few to be singing – and the others I heard all had disabilities, too.  (Why don’t people sing the anthem??)  When the Pledge of Allegiance was said, she stood and proudly recited it, too.

I was crying.  This amazing young woman was proudly honoring her country!  She remembered what to do and never had to be reminded.  Even later, when Taps was played, she stood and listened quietly.  She stood when she felt it was the right thing to do – she didn’t look around and see what others were doing.  All I could do was hug her and tell her how proud I was.  (She, of course, looked at me like I was crazy – she had no idea why her actions made me proud.)

This is the same little girl who used to fight about going into stores – the assault on her senses was too great.  She screamed when I left the room because she didn’t know if I had disappeared.  She beat her head on cement walls and put her head through two windows.  She ran from me – she ran from teachers.  She screamed when things changed her routine.  When in to the middle of a meltdown, she grabbed my hands to try and make me hit her head.  (sensory issues – she desperately need deep pressure – it took me years to figure that one out!)

I am not telling you any of that so you feel sorry for her.  I’m telling you so you can see that every child, no  matter what behaviors they have, can improve!  You have to keep your faith and hope, even when you spend your days crying from exhaustion and going on 2-3 hours of sleep a night.  Trust me – I know exactly how you feel!  Please, please – never give up on your child.  Dark days do go away (and yes, sometimes, they come back – but they always leave again!)

Casey’s changes didn’t occur in my time frame (otherwise, she would have been having days like today when she was 8!) but it did happen.  She grew up – I learned how to help her.  Keep working with your child – keep fighting for services – keep your faith!

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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 and Halloween – Fun or Too Much Stress?

Autism and Halloween

Halloween is almost here again and Casey has asked several times about trick or treating.  The funny thing is she always answer herself with “Trick or treating is for little kids.”  I know lots of parents of adults with special needs take their kids trick or treating and I think that’s great. For me, autism and Halloween have never been much fun.

I think there was one year that Rob wanted to wear a costume.  He always wore one because his sisters did, but he truly couldn’t have cared less.  Trick or treating wasn’t fun for him – again, he did it because Casey and Mandy did, but he didn’t like being in crowds of people, especially when they were in costumes.  He didn’t like talking to people – “Trick or treat” or “Thank you.”  He didn’t care about the candy.

Casey liked dressing up, but she rarely said what she wanted to be.  She wanted the candy that came from trick or treating.  She didn’t care if she appeared rude as she grabbed candy.  Taking the three kids trick or treating was so stressful for me.  If given the option, I would stay home and pass out candy.

In the last few years, Casey has chosen what she wanted to be.  One year, she was a mermaid – another a unicorn.  This year, she wanted to be Dorothy from the Wizard of Oz.  This completely shocked me because that movie was never her favorite.  Mandy and Rob were obsessed with it – Rob still is.

Mandy and I decided if she wanted to be Dorothy, we would all be Wizard of Oz characters and go to the County Board of DD dance together.   Casey and Rob love the dances and I’m so thankful our county holds dances several times a year.

We really weren’t sure Rob would get into the whole costume thing.  I talked to him about it and asked who he wanted to be.  He wouldn’t answer, so Mandy decided to be the Cowardly Lion and I would be the Scarecrow.  Rob loves wearing hats, so we thought we would get a funnel for him and be happy with that.

My dad actually made a neat funnel hat for Rob and he was thrilled with it.  He couldn’t stop giggling when he saw it and tried to wear it over his headphones.  We talked about the dance for a week or so and I kept telling him he could be the Tin Man.  He just laughed.

The night of the dance, I hoped he would wear a gray shirt, but knew the chances weren’t great.  I cut out a heart for him and made an axe.  When he saw us getting ready, he jumped up and put his shoes on.  I asked him to please wear a gray shirt – and he immediately pulled off the red shirt he was wearing.  I put his t-shirt on inside out to cover the logo a little – and he left it that way!

He even asked to paint his face!  (Mandy had painted a lion face on herself and given Casey a little make up)  I never dreamed he would sit long enough, but he let me paint his face and asked for his arms to be gray, too.  I told him we’d better not paint his arms and he was ok.  He grabbed his axe and put his hat on and was ready to go.  (A word of caution – paint and beards do not go well together.  I never thought about that.  His beard was like a brillo pad and he was not a happy guy as we tried to get the paint out later!)

We posed for pictures and headed to the dance.  We got several compliments about our outfits and Casey took off dancing after tossing her basket and Toto at Mandy.  Rob climbed to the top of the bleachers in his usual place.  Casey danced her figure 8’s around the floor and he watched the flashing spinning lights.

Soon, he got up and actually danced with me!  He asked for “The Twist” but he was willing to dance to other music.  He has his own style of dancing, but I was so excited to see him willing to try something new!  Casey even slowed her dancing ( I use that term loosely – she tends to gallop back and forth and jump up and down) to dance with Mandy.   We had so much fun dancing together – and his hat stayed right on his head.  He was so proud of it.

I know how hard holidays can be for your little ones with autism.  I don’t miss the stress of trick or treating at all.  I don’t miss Halloween parties that I didn’t enjoy because Casey and Rob didn’t.  I don’t miss struggling to find ways for them to enjoy Halloween, too.  But, I have learned that just because something has “always been done this way” means it can’t be done differently.

We make our own traditions – ones that we can all enjoy together.  I remember the first year that all three kids carved their own pumpkins and how proud Casey and Rob were. (For the next several years, their pumpkins always looked exactly the same.)  Last year was the first time Casey didn’t ask to carve a pumpkin.  She hasn’t mentioned it yet this year.  I can’t decide whether to be happy to avoid the mess or sad that she is growing up.

There is more awareness of autism now than when my kids were little.  Hopefully, you won’t meet as many people who make nasty comments about your child’s lack of communication or the fact they aren’t wearing a “real” costume or are trying to grab too many pieces of candy.  If you do meet any, educate them, if possible.  Ignore them otherwise.  Some people will never be aware of the needs of others.  Don’t let them ruin your fun.

Dress your little one in whatever they can handle.  If it’s not a “real” costume, who cares?  Your goal is to help them have a night of fun – not to worry about the ignorance of others.  If your child is non-verbal, print a card that says “Trick or treat” on one side and “Thank you” on the other.  You can easily help them flash the words to people.

If your child only wants to go to one house, visit one and go home.  No one needs that much candy, anyway, and you’ll hopefully prevent a meltdown from sensory overload.  You may have to adjust your expectations to fit your child and that’s ok.  You can’t force your child to enjoy something and the possibility of a meltdown just isn’t worth it.

Adapt your plans as you need to.  Do what your child needs to do.  Ignore the people who have opinions on how they would handle Halloween – they are not experts on your child like you are.  I hope that your Halloween is a fun and happy time for you and your family.  I’m still so excited that Rob joined in this year and am hoping you have a wonderful time, too!

 

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Autism, Sensory Issues and Fun

Autism, Sensory Issues and Fun

In our house, the last weekend of September/first weekend of October is a time to be thought of all year.  That’s the week that the fair comes to town with all of the spinning, dropping, swooping rides that Casey and Rob just adore.  Their autism sensory issues enjoy the most amazing times on those rides.

Rob loves anything that will swing him.  His absolute favorite is a giant boat that swings back and forth.  While most people want the end seats so they go higher, Rob doesn’t care.  If the end is open, he’ll sit there, but he’ll take any seat, as long as he gets to swing.  He was on this ride at least eight times this morning.

Another favorite is one that swings side to side.  He giggles as soon as he sees it and smiles through the whole ride, even when it goes high.  It always amazes me that he is scared of heights (won’t even think about riding the Ferris Wheel) but he’ll happily jump on rides that go just as high.

He refuses to go on anything too high.  Or anything that will go upside down.  He likes to go in circles.  Casey will ride anything, at least once.  She has to ride the Ferris Wheel, even though she is terrified of heights because she has rode it every year.  It’s routine and you can’t break routine!

We plan to get to the fair early on Sunday mornings, because there is never a crowd.  The kids can run from ride to ride without stopping.  By the time the crowds come, they are ready for French fries and to head home.  Rob doesn’t like crowds at all and after a few hours, both of them begin “shutting down” because they are over-whelmed.  What was a dream time turns into a difficult situation for them.

The swinging calms Rob down.  I’ve often told our neighbor I was going to buy a huge boat swing for our backyard.  She was completely agreeable, as long as she could ride it, too.  While I am joking about the giant boat, I desperately wish I could find something else that makes him so calm and happy.  He loves his swing, but it can’t swing him as far and as high as he wants.

Many families I’ve talked to don’t go to the fair.  The noises, the lights, the spinning, the people – it’s just too much for many people with autism sensory issues.  I understand that completely.  While the kids enjoyed the fair when they were younger, it wasn’t nearly as much as now.  Today, they can tell me what they want to ride.  They can tell me when they have had enough.  (usually by asking for fries – that’s always been the last thing we do and as you know, you can never break the routine!)

Casey and Rob rode constantly for a few hours.  I don’t think Rob was completely ready to stop, but when Casey asked for fries for the third time, we knew it was time to go.  I can always tell by the look in their eyes when they are becoming overwhelmed and shutting down.  The happy, sparkles that they start the day with are gone and dull eyes are looking out.  They both withdraw when they are overwhelmed.

When Casey was little, she didn’t give me any warning that she was overwhelmed until the meltdown happened.  She wasn’t able to say she had had enough.  Thankfully, she can now.  Hopefully, your little ones will grow into that skill, too.  Rob never had those meltdowns.  He would just withdraw into himself until he felt better.

I’ve always been willing to leave when the kids let me know it’s time.  It’s hard to do that, sometimes, when it costs so much to go to the fair, but at the same time, we have beautiful memories of a day spent together laughing and having fun.  It’s hard to put a price tag on that, especially since for so many years, Mandy and Cory were far away and not able to go.  Having them all with me today was so special and a day I’ll never forget.

There was one minute today that I felt a little melancholy.  When Casey and Rob are at the fair, someone is with them all the time, except when they are riding. (I watch them get on and then go to the exit and wait – it’s awesome to be able to do this!)  I saw some women sitting on a bench, enjoying each other’s company while their kids ran around the rides.  For just a second, I wondered what it would be like to come to the fair and be that relaxed.

It’s not that I was jealous.  More that I was curious about a life like that.  But, as Cory pointed out, I could do that, if I wanted to – just go to the fair without the kids sometime.  He was grinning and I had to laugh, but he’s right.  I may wonder about the lives of others, but in reality, they have problems, too.  Maybe not the same issues that we have as a family, but something.

I hope that each of you can find ways to enjoy family time together.  It’s never easy (But I doubt it’s all that easy for “typical” families, either!) but go for it!  Stay a few minutes.  Leave when you want.  It won’t work out all the time, but when it does, you will feel like I do, right now.  Happy, relaxed and so blessed to have the kids that God gave me.

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Autism and the Person Inside

Autism and the Person Inside

An autism memory popped up on my Facebook page yesterday of a day that I remember clearly.  When I got up that morning, I discovered that, during the night, Rob had gotten into the refrigerator and all of the cardboard boxes (waffles, pizza, etc) had disappeared.

The liquid soap that usually sat on the bathroom sink was gone – only the empty bottle remained and the lovely smell of coconut filled the room.   I could feel the irritation getting a better hold on me.  Why couldn’t he just sleep?  I was tired and I just needed a break.

When I went into the kitchen, I found the dish soap bottle had also been emptied and there were a few bubbles left in the bottom of the sink.  I was ready to explode and trying desperately not to get angry at Rob or to say anything that would hurt his feelings.  I knew it was all sensory issues and he couldn’t help it, but still, some days, I just didn’t care.

I went about starting my day, grumbling under my breath about autism and writing a list for the store.  I packed lunches and got Casey up (she always needs more time than Rob to get ready!).  When it was time, I went in Rob’s room and watched him sleep for a few minutes.  He looked so peaceful and I wondered again why he couldn’t just sleep through the night and stay out of stuff!

He rolled over with a smile on his face.  I said, “Hey buddy – you need to sleep during the night.”  He jumped out of bed and ran into the bathroom.  At first, I thought he was getting sick and I followed quickly.  But he was standing at the sink and grinning ear to ear as he pointed to it.  I said, “I know – the soap is gone.  I wish you wouldn’t do that.”  He kept smiling and said “clean.”  Me – “I know, Rob, I need to clean it.”  He pointed again and suddenly, I realized – he wasn’t telling me to clean – he was proud  because he had cleaned it for me!

All of the irritation was gone in an instant.  I remembered saying the night before that I needed to clean the two sinks.  So, Rob did it for me.  Maybe not in the way I would have, but he used what was available to him (cleaners are never in sight at our house) and helped his mommy.  All I could do was hug him tight and say, “Thank you, Rob.  You helped me so much!”

His grin was huge and he ran off to get ready for school.  When he went into the kitchen he looked in the sink and laughed again.  He danced off to school, happy that he could help, while I sat at the table and felt like the worse mom in the world.  My little guy was trying to help  me and instead, all I saw was the sensory issues and the autism.  I didn’t think about his need to help me.

I wondered why it seemed that I always jumped to the conclusion that autism was the reason Casey and Rob did anything.  I thought about some of their “quirks” and knew that some could very well be because they are my children and not because of the autism.  We all pass on traits to our children – hair and eye color, height, temperament – why not some “quirks” too?

I’m guilty of not trying some foods because they look funny.  Some smells make me sick and there are certain fabrics that I don’t like.  The main difference is, I don’t have a meltdown when confronted with sensory issues.  I can say, “No thanks” and move on.  Who knows what I would do if I couldn’t verbalize what was bothering me?

So I try not to blame everything on autism.  Rob was helping his very tired mom and I got irritated and blamed autism.  I was wrong.  Maybe some of the things we get so upset about aren’t autism at all.  Maybe it’s just the way they see the world – maybe partially because of the autism, but maybe because we all see the world differently.

We all need to try to remember that autism is just a part of who our kids are.  Sure, it may be a big part, but it’s still just a part, just like what they look like.  It’s hard, but please – look at the person first and the autism second.  Some days, this is nearly impossible, I know, but it’s so important.

Our kids may not be able to communicate very well, but they understand what is going on around them.  Rob knew I was stressed about getting things done, so he decided to help me.  I still feel bad that it never occurred to me that he may be helping.  I just assumed he was looking for sensory input and making more work for me.

There are days when you will just hate autism.  You will hate that your child has to deal with something that most people can’t even begin to understand.  You will be discouraged and you will cry.  But autism should never be what you see first when you look at your child.  See their bright, curious eyes.  See their smile.  See the love they have for you.