September 2018 - Autism Apples Koolaid

September 30, 2018September 30, 2018

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?

September 23, 2018

Autism and the Really Bad Night

I’m tired. There’s no other way to say it. I’m not sleepy tired – just tired of stuff. Rob had a terrible night Friday and we didn’t sleep much and I think that’s catching up to me. (I’m always okay the day after no sleep, but man, that second day is a killer!) Thank you, autism, anxiety and an almost full moon.

I’m still not sure what was going on with him. There are many possibilities and he can’t tell me what was bothering him. He didn’t say he was sick or needed Dr. Myers, so I don’t think it was his ear. He was just off when he got home from the workshop and as the night went on, he got louder.

At 1:00 in the morning, he let out a yell to wake the dead. I ran to the bathroom to find him leaning over the sink, but as soon as he saw me, he grabbed me in a bear hug and couldn’t let go. We stood there for several minutes before he would let go and lean his head on my shoulder. I finally got him back to bed and sat with him for a few minutes before he said “Goodbye, Mommy Jen.” (He always says that when he is ready for me to leave him alone.)

I’m not sure what time he went to sleep, but I didn’t hear him again. I kept waking up to check on him and when I was asleep, it wasn’t a restful one. Things just kept running through my mind…

Was he upset about me telling him to leave the emergency windows alone on the shuttle? He had been playing with it and the shuttle driver asked him to stop and slide away from it, but he didn’t listen. I know how much he likes Warren, so for him to ignore him is odd. Maybe he was worried that Warren was mad at him? (Rob gets extremely anxious when he thinks someone is upset with him) When I talked to him, I just told him he needed to listen to the driver and leave the window latches alone, but who knows? Maybe he was dwelling on it.

Maybe the not quite full moon was already having an affect on him. I know some months are worse than others and I never know which kind of month we’ll have.

Or maybe his ear was still bothering him and he just didn’t want any more ear drops in it. But he hasn’t pulled at it for several days, so I don’t think that’s it.

Maybe his room was too hot…. but he had his AC on.

He was a little upset before he went to the workshop that morning about our still unresolved issue. (It has nothing to do with the workshop, but a family issue.) I keep explaining to the kids that the problem isn’t them at all and Casey believes this (she rarely thinks anything negative about herself. 🙂 ) but Rob takes it so personally. Maybe he was fixated on that and wondering why things changed.

Was he hungry? Too tired? Who knows? And so we both cried in the bathroom in the middle of the night. I hate the helpless feeling – when your child hurts, you want to fix it and I didn’t even know where to begin. I thought maybe if he got comfy in bed, a few words would come, but they didn’t.

I let him sleep as long as he wanted Saturday morning. He was still off when he got up, but didn’t seem to be as upset. He didn’t enjoy his trip to the Dollar Tree (a favorite place to go) and yelled his anxiety song the entire time we were in there. Usually, I don’t care what other people think, but being tired, I just wanted him to settle down. So I tried to calm him and it had the opposite effect. He knew he was stressing me out and got even more anxious.

Luckily, we were going to a car show to see Cory’s car and he calmed a little there. He enjoyed looking under the hoods of all of the cars and sitting beside Cory’s car. He was still loud, though. And it was still getting to me. I know that’s the absolutely worst thing I can do, but I couldn’t help it. I was just done.

Tracie suggested we take the kids for a walk after the car show and they both enjoyed that. He seemed happier after that (seeing Tracie, Cory, Mandy, Grandma and Grandpa helped, I’m sure) and took a short nap before he had supper. But then, I had to keep waking him up (I was afraid he wouldn’t sleep again, if he slept too much during the evening). He took his shower early and slept all night.

I was so relieved! My head knows there is little I can do but offer comfort when the kids are having a hard time, but my heart wants to do more. I feel like I should be able to figure out the problem, even if they can’t tell me. I just ache when they hurt and I can’t help them. And I resent autism.

I get angry when I know what problems are and still can’t help them. I want to scream at people to make them see the pain they are causing, but I know it won’t do any good. I just keep praying the situation will resolve in the kids’ best interest.

I know every one of you knows exactly how I feel. Autism definitely brings out the helpless feeling more than any of us want. It brings out anger and resentment. None of these are especially good feelings – they are ones I sure want to avoid!

I’ve got my fingers crossed that the full moon comes and goes without a repeat of Friday night. It’s been years since we’ve had a night like that (we’ve had sleepless nights, but not one with this degree of autism anxiety) and I hope it’s years before I see another.

I hope the full moon effects aren’t too bad in your homes this month! Good luck!

September 16, 2018

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.

September 8, 2018

Friends without Autism – and That’s Okay!

Any one who lives with autism has probably made a comment about not having any friends who don’t understand autism. I do understand that statement – and I’d never consider anyone a friend who was cruel to my kids or anyone else with special needs – but I think, sometimes, we are too hard on those who don’t live with autism.

I’ve written before about a special group of ladies in my life. I don’t get to see them often (if you think trying to make plans with one person with autism is difficult, try 6 – 8!) but when I do, it’s as if we’ve never been apart. We do talk about autism and how it affects every single, teenie tiny part of our lives, but that’s not the only thing we talk about. And sometimes, it’s the not talking about autism that helps as much!

I don’t know about you, but sometimes, I’m tired of autism. I am in no way saying I’m tired of my kids – I’m saying I’d like to make simple plans – or watch TV without “Long Black Train” being sung in the background – or be able to eat my supper while it’s still mostly warm (I’ve pretty much given up on hot meals! 🙂 ). I want to talk about anything but autism. I’m lucky – I have Tracie. She’s used to the sound effects in my house (even if she giggles while I grumble! 🙂 ) and we can have a long conversation that would probably be boring to anyone but us.

And this brings me to my point. Thanks to Facebook (if you ignore the drama and trash, it can be a great way to find old friends and stay in touch with far away family!) I’ve been able to reconnect with some women who were a huge part of my life many years ago. Mandy and their daughters were in Brownies and Girl Scouts together and the group of us moms became friends. We took the girls places and worked on the PTO together. And we didn’t talk about autism.

I never hid autism from them, but when I was with them, I could just be Mandy’s mom. I could be a Brownie mom or a room mother or a PTO volunteer. I wasn’t trying to handle meltdowns or sensory issues. I was simply laughing and enjoying being a mom. After reconnecting on Facebook, I started thinking about how much fun I had during those meetings.

I’m sure there were days these ladies wondered about Casey and Rob – and I’m sure we even talked about it at times, but those moments are not the ones that stand out to me. What I remember most was the fact that they were so supportive of me and how much they helped me when getting Mandy places was going to be difficult. She didn’t have to miss anything because I couldn’t find someone to stay with the other kids.

Cathy knew a lot that happened in our house because she and I were close friends before we had kids – she and Tracie were some of the first people I told when Casey got her diagnosis. And they were both with me as I worried about Mandy and Rob and whether they may eventually be diagnosed, too. But when we were with this group, autism wasn’t the topic. Just being a mom was.

Kristi, Rhonda, Cathy, Stacy and others didn’t live with autism. They didn’t know much about it. And they were my friends. Being friends with them allowed me to just be Mandy’s mom and that is one of the most precious gifts they could have given me. I hope they understood what they did for me so many years ago, but I doubt it. We were just having fun.

So many people only want friends who understand autism. I get that. Life is easier if your friends accept your children. I’m only saying that it’s okay to have friends who don’t “get” autism. Let yourself just be you and not an autism mom or dad. We don’t get many breaks from autism – don’t ignore those chances when they come your way.

I wouldn’t be friends with someone who refused to ever listen to me if I was having a hard time with the kids. But because someone doesn’t understand autism is not a reason to never be friends with that person. Some of my closest friends have never met the kids – we were friends as children and now distances keeps us apart. Just because they don’t know Casey and Rob is no reason to discontinue that friendship! Many times, during tough days, a text from one of them brightens my day more than they can imagine.

Sometimes, I just don’t want to talk about autism or what affect it has on us. I just want to grumble about bills or laundry or the never-ending list of things that need done around the house. I need friends who understand my life – who are a big part of the autism parts, like Tracie – and friends who understand, but don’t live it, like my awesome co-workers. And I need friends who truly don’t have a clue, but they care about us.

Don’t believe the memes you might see that say only people who understand autism can be your friends! Yes, they need to have compassion for those with special needs, but they don’t need to live it. Let yourself enjoy an “autism-free” hour or two once in a while. You will be shocked at how much better you will feel.

Hopefully, each of you will have a huge group of autism and non-autism friends – a big group that supports and loves you and your children. We need friends to call when we need a shoulder to cry on – and when we need to vent – and when we need to try and think through a new plan – and when we just want to talk about the latest episode of The Walking Dead – and a new restaurant we tried. Don’t limit yourself to people who live with autism – you might miss out on a most amazing friendship.

And don’t forget about online friends. Sometimes, people you will never meet become close friends, simply because for some people, it’s even easier to be completely open and honest with those who don’t know you. The fear of judgement is gone and you can just be you. Message me anytime! 🙂 🙂

September 2, 2018September 2, 2018

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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