Category: autism and sensory issues

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Autism and Very Real, Very Painful Sensory Issues

Autism and Very Real, Very Painful Sensory Issues

I’ve written many times about the sensory issues that Rob and Casey deal with every day. What continually shocks me is that people think their sensitivities are just made up – or that they are just being brats and doing what they want. Let me tell ya – I am furious when that happens!

Someone insisted Rob wear a different type of shirt to the fair last week. I wasn’t there to stop it. The heat index was well into the 90’s even in the evening. By the time Rob got home, he had blotches of red all over him and was swelled up. Thankfully, a cool shower, the AC and baby powder helped soothe his skin. He will never wear that shirt again.

Rob doesn’t choose to wear the same types of shirt because he is being a brat. He wears them because they are comfy and don’t irritate his skin. He needs those shirts to keep his anxiety in check. He needs to be accepted as he is – sensory needs and all! He is willing to try new shirts for short periods of time and that’s all I can ask of him. When he is ready, he will wear different shirts again. When that will be, I have no idea. But I’m okay with buying him what he needs to be happy.

He is often called a picky eater. While it does seem like it because there are so many things he won’t eat, it’s his sensory issues, not him just trying to get his way. Anything gooey will make him gag. He has tried new things in the last year and every gooey thing makes him gag. He keeps trying, but him eating pudding is just not that important. There are plenty of healthy choices that aren’t going to make him gag. It’s not that big of a deal. He loves fruits (fresh, not canned, tho he will eat canned pineapple) Vegetables, especially peas and corn on the cob. (He won’t touch creamed corn or peas) and most meats (except lunch meat like bologna).

He won’t eat most cookies or candy. He does love certain types of chips (like his mom! 🙂 ) He used to love spaghetti, but can’t eat it now. I’m not sure why – but I’m assuming at some point, the tomato sauce upset his stomach and he thinks it will every time he eats it.

Crowds bother him. He can handle them for short periods of time, depending on what he is doing. Certain pitches of sounds cause him pain, but that seems to be getting a lot better. He doesn’t feel pain from bruises or cuts. He doesn’t feel water that is too hot. I have no idea why he is so sensitive to the feel of clothing when he doesn’t feel other things. But – I don’t need to know why. I just know what he needs and that’s all that matters.

Clothes don’t bother Casey. She feels when water is too hot, but she also seems to not know when she is hot, if that makes sense. She wears heavy clothes on warm days, simply because the calendar in her head says she should. She doesn’t taste salt, so she wants to pile salt on everything. (I limit that!) She is more sensitive to sounds and will put her fingers deep in her ears to protect herself.

Gooey foods don’t bother her, but her doesn’t like to get anything on her hands, like paint or mud. She will let me paint her hands for a craft, but she needs to wash right away. She doesn’t feel pain from cuts, either. Several years ago, she was taking forever getting ready to go to Hopewell. When I opened the bathroom door to check on her, she was sitting on the edge of the bathtub with a box of band aids trying to stop the blood that was pouring from a 5″ cut on her leg. Apparently, her brand new mattress had a spring pop up thru it and she cut her leg in her sleep. It took 16 staples to close the cut. But – she never cried from the pain. She never told me about it.

It’s not always easy living with their sensory issues. I would love to see Rob in jeans and a flannel shirt. But it’s not going to happen right now and I can accept that. It might happen in the future – it might not. There is no way of knowing and that’s okay, too. It’s hard some days when her needs are completely different than his, but we figure it out. Probably not always in the best way, but in the best way for us.

Please, please – let your child do what they need to be happy and comfortable. I understand your frustrations, but how frustrated we are is nothing compared to the pain they feel at noises or touches. Our frustration may come and go, but their needs are constant. Imagine how you would feel if it was painful to be in certain restaurants because of the AC (Casey and Rob both avoided several places when they were smaller. We couldn’t use the AC in the car because Casey just cried.). Imagine your frustration if clothes were painful and you were forced to put them on anyway. You would have a meltdown, too.

I know parents worry about their kids getting the right nutrients when they will only eat chicken nuggets and pizza. Keep offering very small bites of other foods. And keep in mind that it might be the smell of the food that is the problem. It’s all trial and error. Yes, it’s exhausting, but you never know when your child might decide to try something new.

Your child’s sensory issues are real. They are painful. They are uncomfortable. They may just be an annoyance. Every person has different needs and to different degrees. Follow your child’s lead and let them be the amazing person they were created to be. Trying to force them to be something else will only cause pain and heartbreak for all of you.

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Autism and the Need for Discipline

Autism and the Need for Discipline

It’s hard to imagine but I have talked to many families who have a child with autism who have told me they won’t discipline their child. They feel the child will not understand and will make the behaviors worse. I’ve also been told that having autism makes the child’s life hard enough, so why make them follow rules? Hmmm – what the heck are they thinking??

We all have to follow rules! I personally find speed limits rather confining and wish I didn’t have to follow them. I’m sure each of you has a rule or two that you would rather not follow. But – that is life! Everyone has rules to follow and allowing your child with autism to get away with anything they want is only setting them up for failure. They need to know boundaries and you need to enforce them.

Yes, it is much harder to discipline a child with autism, but you can do it! As a parent, that’s one of your jobs. If you wouldn’t let your “typical” child do something, then the ones with special needs don’t get to do it either. It’s really that simple. The question is – how to discipline?

First, you need to understand that every behavior is communication. Every single one. We all do it! We smile. We say thank you and please. We avoid people or things we don’t like. We look for what we enjoy. Just like our kids do. For every behavior, look for the trigger. Yes, this is hard and may take weeks. Keep a journal of what happened right before the behavior.

What did your child eat? Are they sleepy? Are they wearing new clothes? Did your routine change unexpectedly? Is there someone new around your child? What time of day did it happen? It is tedious work, but keeping a journal is the easiest way I know to discover a pattern of the behavior and might give you a clue about what is happening. Write down every detail you can think of. You might be surprised at what you find out.

Casey had a terrible time in Kindergarten between 9:30 and 10 every morning. She refused to eat breakfast and never said she was hungry, but as soon as I started sending a small snack for her to have about that time, her behaviors diminished. Had I not insisted on knowing what time she got upset every day, I never would have discovered the simple truth that she was hungry. You will need the help of everyone who is around your child. Don’t be afraid to insist on details!

Second, you need to learn what behaviors are caused by the autism and which ones are simply the child being a turkey. (And for any one who thinks a person with autism can’t be a turkey, come spend time at our house – you will soon change your mind.) Casey is especially good at doing things she knows she isn’t supposed to and smiling a sweet, angelic smile when she gets caught. Nope – doesn’t work on this mama. I tell her she’s cute, but she’s still in trouble. 🙂

You need to discover whether your child is having a meltdown or a tantrum. A tantrum is where they are screaming to get what they want and they will calm down as soon as you give it to them. A meltdown is often a sensory issue and they simply cannot calm down. Many times, they may not even realize you are with them. You cannot talk them down and you can’t touch them. You can only wait for it to be over.

When Casey is in meltdown mode, she has no clue I am with her. She is out of control screaming, hitting her head, flopping around and she isn’t saying any words – just screams. It took me years to realize the best thing I could do for her at those times was to be sure she was safe and stay out of her way. And to be ready with a head rub and a kiss (and a hug, if she wanted, but those were few and far between). When she was younger, I did make her go to her room when she was upset, as she was able to destroy things without realizing it. The back door window, the garage window, the bedroom window, the door, the banister for the basement steps…. and she never left a bruise or a cut on her. It was safer for everyone if she was in her room. I stayed in there with her and let her scream.

The end of those meltdowns is one of the things I’m most grateful for. Once in a while, she lets out a scream to wake the dead, but I can usually (fingers crossed!) talk her down before she loses control completely. It is not a pretty picture.

Now, I can see that her meltdowns were almost always (She could be a turkey! 🙂 ) related to her autism. Changes in her routine were terrifying to her and she screamed about it. Certain sounds were extremely painful to her, but while I knew they bothered her, I didn’t realize how badly. Any kind of change was likely to bring on the screams. (remember the story of the band aid on her toe? or the gloves in the summer?) She just didn’t have the words to tell me – she screamed her pain instead.

She used to chew the feet on Mandy’s Barbies and make Mandy so mad because the shoes wouldn’t fit anymore. I made pictures for her over and over that chewing feet was NOT okay, but she needed the deep pressure. It was so hard to help Mandy understand that Casey (and Rob, at times) weren’t being brats – they needed the pressure that chewing brought. I hated that I couldn’t make any of them understand.

As for how I disciplined them, it was different for each of them. For Rob and Mandy, just knowing I was mad was enough to curb the behavior (though Mandy does like to tell the story of me smacking a wooden spoon on the counter to get their attention, how it broke and they all scattered to their rooms! 🙂 ). I had to be more creative with Casey. Sometimes, it was threatening to take away a trip she wanted to go on. Sometimes, it was to send her to her room. Sometimes, it was to sit on the couch with me.

How you choose to discipline your child is up to you. Only you know what will work for your family. And yes, it will get ugly, but you are not doing your child any favors by not teaching them proper behavior. It may take years, but that’s okay – your child will learn! You may choose to take away a favored item or use a time out chair. Remember – discipline is only to be used for bratty behavior! It is never to be used for behaviors caused by their autism. For those, you will have to help them work through those issues. Again, it is hard and it is exhausting and you will feel like crying and quitting, but you can’t!

Honestly, it may be someone besides you that realizes what is causing a meltdown. Sometimes, we are just too close to the situation to see all of the possibilities. Don’t be afraid to ask someone to tell you what they notice! It does take a village to raise a child! I’ve had other people tell me what’s wrong often and I’m not upset that they noticed it before me – I’m just grateful that I know what is causing the problem so I can work on fixing it!

I know discipline is just another “thing” you have to deal with, but it’s so important. Your child needs to know their boundaries (streets and water come to mind!) so they are safe. Of course, most of our children have no sense of danger, but they can be taught (and always, always watched, as the temptation of water is always a strong one, it seems!).

How do you discipline your child? What techniques work for you?

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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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How to Help your Child with Autism Sleep

How to Help your Child with Autism Sleep

Autism and sleeping as been a big topic of discussion on our Facebook page the last few days.  One mom asked for some advice and so many offered ideas for what helped their child sleep.  Be sure to check out that post – there are a lot of ideas that I had never heard of, but parents are having success with each of them.

When Casey was a toddler, she would “sneak” out of bed and down the hall to lay by the living room door.  Of course, I never noticed the little green ghost carrying three teddy bears as she ran by me.  🙂  When she did finally go to sleep, she stayed asleep all night.  Now, I think that she was lonely.  Mandy was just  a baby and was sleeping in my room in her crib (because I didn’t want her crying to wake Casey).  As soon as Mandy moved into Casey’s room, she stayed put…. but not necessarily asleep, as she loved to peek in Mandy’s crib and giggle at her.

After Casey got her autism diagnosis, she managed to switch her days and nights – meaning she wanted to sleep all day and be up all night.  She slept at school when she could and on the days when she didn’t have school, I spent my days fighting to keep her awake. (she would hide to sleep – or even lay in the middle of the backyard and curl up!) But even if I did keep her up all day, she still wanted to be up all night, too.  Those were some long nights, but finally, she adjusted herself.

Rob slept through the night as a toddler, but then decided that he wouldn’t sleep in his room at all.  I am guessing he had a bad dream and associated it with his room.  Every night, as soon as he could, he grabbed a pile of blankets and either came to my room to sleep on the floor or he went into the girls’ room and slept there.  For years, he slept on the floor.  I know at times, it drove Mandy crazy, as she got tired of him being there, but Casey never said much about it.

And then it happened.  Rob couldn’t go to sleep.  When he did finally crash, he didn’t stay asleep.  He was up and down all night – singing, playing, opening and shutting doors.  I was grateful that, unlike others with autism, he never tried to leave the house or get into anything dangerous.  He just wandered – checked on the girls, checked on me and laid on his bed and “sang.”

He had piles of blankets – a nightlight – a fan – and a CD player that played the same song over and over and over ALL NIGHT.  If I turned it down or off, he would wake up.  If I turned the light off in the kitchen, he would wake up.  His door had to be open – the closet door had to be open.  And still he sang and wandered.

I can go one night without sleep without too many negative affects.  After so many, I started falling asleep, even if he was wandering – I just couldn’t stay awake any more.  After a while, my body adjusted to little sleep, but I still wasn’t in great shape!  He stopped watching TV before bed time – he didn’t have any electronics at that point in time.  He just couldn’t relax enough to sleep and he didn’t sleep during the day to make up for it.  He just didn’t need much sleep.

But his lack of sleep was causing him to gain weight and I knew it was having other affects on his body.  I talked to his doctor and we tried melatonin.  For a while, it worked really well, but then it stopped helping.  We finally decided his anxiety levels were causing him to be unable to sleep, so we tried anxiety meds.

After many, many years and many tries/fails, he is sleeping through the night.  And since he is sleeping, his anxiety levels are dropping and he is able to try new things.  He also is less likely to overeat.  I can tell him he’s had enough and he’s okay with that.

We have an evening routine that, to be honest, I don’t mess with much.  Casey takes her bath, then he has a shower.  She has her pills and a snack while he showers, then he gets his.  They either play with iPads, rip cardboard or color an hour or so and then go to bed.  We don’t do any exercising after baths – they don’t drink any caffeine (especially Casey – one glass of iced tea at supper will keep her up all night!).  The TV is on, but they don’t watch it often.

They both have fans and nightlights in their rooms.  Right now, they each have a window air conditioner (we have central air, but Casey’s room doesn’t get cool enough and the colder it is, the better Rob sleeps.)  I’ll leave the AC’s in as long as possible, just for the sleeping aide.  I don’t usually take them out until mid-October, especially Rob’s. Casey is okay for hers to come out as soon as the weather cools off – she doesn’t need the noise.

Casey sleeps with several blankets and turns a video on her TV before she goes to sleep.  She has a digital picture frame that is on all night and she sleeps with a stuffed toy.  Most nights, she is asleep by 9:45 or 10.  Once in a while, she has a hard time sleeping and she may be up most of the night.  On those nights, I have to keep telling her to stop dancing in her room.  Her thumping/jumping is right above my head!

Rob has three heavy duty sleeping bags, three really heavy blankets, two extra large lighter weight blankets, and more small fleece ones (8 – 10 is a conservative guess).  He has four pillows and doesn’t sleep with his head flat on the bed – he is often on his stomach with his forehead pressed against the wall, sound asleep.  He needs his fan and night light, but now, his door must be closed and the kitchen light off.  He doesn’t listen to music anymore and doesn’t turn on the TV.  Often, he goes to bed as soon as he realizes Casey has (monkey see, monkey do – comes in handy at times!).  Many nights, he sings for a little while, but is usually asleep by 10:30.  He needs his medications to help him.

So ideas to try:

  • melatonin – you can buy it at Walmart in extended release tablets if your child will go to sleep, but can’t stay asleep.
  • weighted blankets – or just lots of them.
  • sound machine or a fan
  • some people use essential oils such as lavender to help their child relax.  My kids are both too sensitive to odors to try this, though.
  • A simple routine – warm bath, a book, no exciting TV, and a snack (you will have to play around with your routine to see what works for your child.)
  • I just read that an Epsom salt bath could help and that you can also buy magnesium rubs to help your child relax.
  • CBD oil – but talk to your doctor first and be sure it’s legal in your state!
  • turn off all electronic devices a few hours before bed
  • quiet activity, such as coloring or reading, if possible.

Please remember to only change one thing at a time!  If you change a bunch, you won’t know what really helped your child.  If all else fails, talk to your child’s doctor about sleeping aides.  Trust me, I understand that you don’t want to give your child medication unless you have to, but sometimes, you have to – for their sake and the rest of the family!  You can’t be the best parent to your child if you are a walking zombie every day and it will become a safety issue.

 

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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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More Never to be Forgotten Rules for our Autism Home

More Rules for our Autism Family

A few weeks ago, I wrote a post about the unique rules we follow in our house – often without even thinking about them.  Many people enjoyed that post and asked for more, so here we go.

  1. Casey’s feet can never be touching the kitchen floor when the lights get turned on or off.  Seriously, she flies through the room if she thinks someone will flip the switch while she is in there.  And if she is getting a drink from the refrigerator, she’ll hop out of the room if the light gets turned on.  If she has to turn it on herself, she jumps when she turns it on so her feet aren’t touching the floor.  I just asked her why she does that.  (Even though why questions are nearly impossible for her to answer – I thought I’d try!)  Her answer?  “Yes.”
  2. Casey has to hop into buildings.  Truthfully, this is much easier than it used to be!  When she was younger, she jumped through store doors onto one foot, jumped back on the other and then jumped through on both feet.  While this doesn’t sound like any big deal, when you are walking through a crowded door, people are not expecting a child to jump into them from behind or that she will jump back out the door.  I tried pulling her through the doors, but as you can imagine, that was a classic failure!  It got so bad that I either held the kids back from a store door, or sent Mandy in first to keep people back while I guarded the door so no one could get too close as she jumped back.  Thankfully, now, she just does one hop into every store and every house (including ours!).
  3. If something is written on the calendar, it will happen.  One year, Santa brought Casey a calendar that had every holiday imaginable on it – including ones from around the world and religions other than ours.  I, of course, never gave a thought to checking what was printed on the calendar.  Big mistake.  Huge mistake.  Casey decided we had to celebrate everything – Boxing Day, Kwanzaa, Cinco de Mayo, Hanukkah – you get the idea.  Every day seemed to have something on it and she was determined to celebrate them all!  Believe it or not, Santa did the same thing the next Christmas, but got smart enough to open the calendar and black out everything that we didn’t celebrate.  On a brighter not, we learned a lot about other customs that year – I tried to find something simple for each holiday so we could “celebrate” if she was going to have a meltdown over it.  Now, “Cancel” is the best word!!  She completely understands writing cancel on something means it’s not going to happen and while she isn’t always happy about it, she doesn’t get upset.
  4. Windows cannot be left open until Rob deems it’s time. He will shut doors and windows for days before he decides it’s warm enough to leave them open – or I can convince him it’s okay.  His windows are never to be open when he is home.  And he refuses to shower if the window in the bathroom is open.
  5. Casey loves cherry tomatoes and ketchup, but refuses to eat larger tomatoes because they aren’t tomatoes.  (Neither of them generalize well.  Teaching them that beagles and labs are both dogs was a challenge!)
  6. While Rob wears the same clothes all year (wind pants and sleeveless shirts – rarely, if ever, shorts), Casey dresses by the calendar month.  From October 1st – March 1st, she wears two shirts every day – a turtleneck and sweater or sweatshirt.  From March 1st – April 1st, one shirt with long or short sleeves.  May, she can wear capri pants and starting in June, she will wear shorts and t-shirts, until September when it’s time for long pants again.  Now, this sounds like a great idea, but when you live in Ohio, where you can be wearing flip flops one day and snow boots the next (did that a few weeks ago!) she can get really warm or really cold.  But – her schedule can’t be changed.  I’ve tried and then I decided she is old enough to make her own clothing decisions.
  7. Clothing is dirty as soon as it touches your body and cannot be worn again until it’s  be washed.  I mean, if she puts an outfit on and we decide to go somewhere, she will change and throw everything down the laundry chute.  If I’m quick enough (HAHA!) I’ll run down and put those clothes on the dryer so they can just be refolded and stuck in her pile of clean clothes.
  8. Rob has to have the light over the bathroom sink and the kitchen light on before he will take a shower.  The bathroom light, I understand, but no idea about the one in the kitchen.  He’s been doing it for years with no signs of stopping, so I don’t notice it.  I did make the mistake of hitting the switch one evening and turning the kitchen light off – and here comes my dripping wet boy yelling “lights on!” as he slipped and slid from the bathroom to the kitchen to get the light back on.  (Another rule of most autism homes – you never know when a naked or half-naked person may wander through!)
  9. Casey will only drink water from the bathroom sink.  Never, ever will she drink from the kitchen sink.  No idea why or even when she started doing this.  She knows I make their koolaid from the kitchen sink – she has helped me make it before.  But to get a drink, nope – no way!  If she is thirsty and someone is in the bathroom, she’ll stay thirsty instead of using the faucet in the kitchen.
  10. Holidays and birthdays are pretty special in our family.  We have traditions that we love and I truly try to make each of their birthdays as special as they are.  Casey, however, has a hard time relaxing and enjoying the whole day because she has a “schedule” in her head that must be followed.  On a birthday, you get to pick where to have supper, then family comes and you open presents, then you have cake and ice cream.  Until she blows out her candles (we finally got her to agree to a smaller number of candle than her birthday a few years ago!) and has her cake, she doesn’t smile much.  Birthdays are serious business until everything is completed – then you can relax and smile.   Holidays are the same way.  Until the schedule in her mind is complete, she is unable to truly enjoy the day.  I’ve tried explaining to her that we will do everything and she can have fun, but she just can’t stop checking items off from the list in her head.

I hope you got a few giggles from our continued list of rules!  Life is always pretty exciting around here – it keeps me young!  (or at least that’s what I tell myself!)

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Autism Mom and her Not so Little Weatherman

Autism Mom and her Not so Little Weatherman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Is it Hunger or OCD?

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

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

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

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

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

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

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

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

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

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

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

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

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

Stay warm and stay safe everyone!

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How to Help Families with Autism Enjoy the Christmas Season

Helping families with Autism Enjoy Christmas

This is such a busy time of year for everyone and, unfortunately, all of the craziness can be especially hard on the families who live with autism every day.  Now is the time for each of us to practice patience and acceptance even more than we usually do.  Here are some ideas to help everyone have a more Merry Christmas.

Please, if you are having a party, do invite the family with autism.  True, they may not come, but just being invited means so much to us!  Life is tough enough without sitting home and knowing that others just don’t want your family at an event.  Invite them – and be ready to accept them into your home!

Be understanding if they bring their own food for their little one.  Picky eaters don’t become “non-picky” just because it’s a party.  Don’t be insulted if they bring snacks – it isn’t meant to be that way.  It just makes having fun easier when they know their child has something to eat.

Perhaps you could light fewer scented candles.  The smells of the party guests (perfumes, colognes, etc) will be strong enough for anyone with a hypersensitive sense of smell.  If you have a place, maybe you could prepare a quiet spot for your guests.  It can be an empty room or just a spot in the corner for them to feel safe.

Speak to the child with autism!  Just say “hi” and smile.  You can’t imagine how happy you will make the parents by simply saying hi.  So many times, our kids aren’t spoken to because they may not answer.  So what?  Say hi anyway.  The child will know you spoke – and may even say a quiet hi back!

If you are buying a gift for the person with autism, talk to the parents first.  An adult with autism may still love child’s toys – like Casey with her Sesame Street friends.  Now isn’t the time to “force” the person to be an adult.  Buy what they like and enjoy the smiles when they open your gift.  As I’ve said before – Casey and Rob are getting some odd things for Christmas (think bubble wrap and children’s toys) but I don’t care.  I can’t wait to see their excitement Christmas morning, after they see what Santa brought.

Be sensitive to a family’s traditions.  Casey still believes in Santa and I don’t want anyone telling her different.  She can’t wait to hear sleigh bells Christmas Eve and pretend to be asleep so Santa will stop at our house.

Be understanding of the over-excited child at a parade or school function.  Most people seem to assume the child is being a “brat” and that parents can’t or won’t control him/her.  You may simply be seeing a child with sensory issues.  And if you do happen to see a child (or adult!) having a meltdown, don’t judge.  Offer the parent a smile and help, but remember, we deal with this every day and don’t be insulted if we decline the offer.

Parents- you know your child best.  I know not to take Rob into crowds for too long or his anxiety will ruin the day for all of us.  He doesn’t enjoy parties and even at our family dinner, he will join us for short periods of time, but he also stretches out in my brother’s old room for some peace and quiet.  And that’s ok.  Casey is always right in the thick of things, but once her plan has been finished (eat then presents) she just sits and watches the silliness.  She will join in games, sometimes, but others, she just watches and laughs.

While Rob is a picky eater, I don’t have to take anything special for him to eat.  He likes ham and rolls, so he nibbles on those and disappears upstairs again.  He likes to open presents, but when he’s done, off he goes again.

If there is something special Casey wants to do, I’ll find someone to take her or someone to stay with Rob so I can take her.  She loves going to see “The Nutcracker” every year when my niece, Anna, is dancing, but Rob won’t even consider it.

I have a hard time with this, but I’ll share my advice with you.  Parents, it’s ok to do things without your child.  I always hate feeling like I’m leaving them out, but it’s ok that I want to enjoy things without worrying about their needs.  Maybe one of your holiday traditions can be a dinner and movie without the kids.  Or just a drive around to see the light displays.  It’s hard to leave them, but it’s ok.

When you are taking your child to a new place, take whatever they might need to enjoy it with you.  Pack a bag of snacks or fidgets or whatever they like.  If they are happy and relaxed, you will all have more fun.  Who cares what others think?  Even parents of “typical” kids are giving them iPads or cell phones to entertain them while waiting – why shouldn’t you do the same?

Expect that your child might be “off” for a few weeks. When Casey was little, December was not a good month at all.  The meltdowns and screams were terrible. It wasn’t until she was older that we discovered why.  She was never sure she had been “good” so Santa would stop.  She knew how upsetting her meltdowns were to me and was worried Santa would think she was bad.  It was heartbreaking for me to discover that.  She was (and still is!) such a literal thinker.  Good or bad – there was no middle ground.

As for us, we are excitedly waiting for Santa to bring some unusual gifts our way.  We are singing Christmas songs and planning a big day of baking soon.  We still have some gifts to finish creating (aren’t those the best kind?) and Christmas movies to watch.  We have Christmas socks (imagine that!) and Christmas shirts (with Rob saying “no fanks, please, mommy Jen”) and are counting the days till we are all together at my parent’s house.

I hope each of you can find the peace and joy of the season amid the chaos of autism.  Enjoy every special moment that is unique to your family!