Tag: autism parenting

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Autism, OCD and Irritation

Autism, OCD and Irritation

Casey has been on edge this week. While I have seen her beautiful smile and twinkling eyes often, I’ve also seen the irritable side of her. The one that OCD (obsessive compulsive disorder) grabs and won’t let go at times. She has been “off” and I’m not sure what to blame.

We did have a big storm that was supposed to hit us, but luckily, it went around. Rob was especially loud that afternoon, as the barometer dropped. The weather does affect her, but not always as bad as it does him. She was just grouchy. I completely understand that everyone has off days and they bounce back, but she’s been different for almost a week.

She’s focused on her calendar and keeps repeating things she wants to do, even when I tell her I will not put ride the rides at the fair on her October calendar, yet. Nor will I write when we will go to the water park. Or when Mandy’s baby is coming. And when I put her off and explain that I can’t write things I don’t know, she snorts and flips her hair. (Oh my God – the attitude!) She wants things written down – NOW!

She wants Cory’s car show at the fairgrounds and is irritated that it is on Main Street this year. She wants Anna’s birthday, Lacey’s birthday, July 4th, a cookout at Hopewell, and sparklers – and she wants it all written on her calendar. Now. I have written everything I can, but I can’t write that we will have cake for Anna and Lacey because I don’t know when or if that will happen. So, she snorts and flips her hair again. (Yes, her hair is short, but the way she flips her head, I know what she is doing!)

She is irritated that there isn’t any laundry in the dryer. Or that I can’t tell her what we are having for supper – tomorrow night!

But – there are happy smiles, too, so I know this isn’t something that needs addressed with her doctor, yet. If she was nothing but irritable, I’d be concerned, but she’s just picking and choosing what to get upset about and driving me nuts in the process. Because, once she gets fixated on something, as you know, she can repeat it until I want to scream. A conservative guess for discussions about the car show yesterday (it isn’t until mid July!) would be near 100.

I surprised them Thursday with a trip to the zoo. They both love the zoo. He wants to see turtles – she just likes being there. This time, she slept all the way over (about 90 minutes) and then basically stayed completely serious/on edge until we had lunch. She started asking a few minutes after we arrived – way too early for lunch. She barely looked at anything until we finally had lunch, then she perked up and looked around. She got fixated on lunch and nothing would make her happy until we ate.

Her OCD is really grabbing her lately and it won’t let go. I haven’t changed any meds, so that’s not it. She is happy between compulsions (and really, the compulsions aren’t affecting anything but our conversations, so far) so I don’t feel she needs to see her doctor. What I would like to know is why.

Is it the weather? The phase of the moon? Is she not sleeping enough? Is something going on that I don’t know about? Is she going to have anxiety issues like Rob does? Or – and most of the time, I truly believe this – is she just trying to keep me on my toes? 🙂 Wouldn’t want Mom to get too comfy in how well things are going for them, would we?

But really, that’s the autism is. You have routines for years that can’t be changed at all, then all of a sudden, no one cares about those routines. You can’t eat certain foods, then you can. You can’t wear certain clothes, then you can. You can sleep all night, then you can’t. You can eat chips, then you can’t. You can’t brush your teeth, then you can.

Autism is like dancing. Sometimes, it’s slow and steady like a waltz – the same steps repeated over and over in a beautiful pattern. And then… Irish jig time. No one tells you the steps, only that you have to keep up and not stop. And you are out of breath and wondering what the heck is going on.

Yep – been there, done that. I’m just thankful that, so far, Casey is only repeating things constantly. She isn’t getting mad or having a meltdown, just getting irritable and pushy about what she wants. I can handle this. I can answer her without really thinking if I need to. And when I get close to losing my mind…..

I offer her a cookie. It’s not bribery – it’s behavior modification. 🙂

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Autism and the Sense of Touch

Autism and the Sense of Touch

Honestly, the sense of touch is messed up with both Casey and Rob. They are both a mixture of hyper-sensitive and hypo- sensitive when it comes to their skin.

Rob will dig at insect bites until they are bleeding because he doesn’t feel the pain. He doesn’t notice cuts or bruises. He had a broken collar bone and it took hours for him to slow down enough that I knew something was wrong.

I have to turn his shower water on because he won’t notice how hot it is and will get burned. He burned his finger badly as a teen because he laid his hand against a hot pan and didn’t notice. He doesn’t notice sun burn or the sting of a bee. (However, he has had bad reactions to insect stings and ended up in ER, so he is afraid of them.)

He needs the weight of many blankets to be able to sleep as he can’t feel the pressure of just one. He loves standing in pouring water for the deep pressure it provides.

But – his sense of touch is hyper in some areas, as certain food textures will make him gag. He can’t wear certain fabrics as he will break out in a rash. His body temp does not regulate well, as he can overheat but not feel cold.

He enjoys his skin being “brushed” (a light tickle that I never thought he would notice). He also likes being lightly tickled on his arms and back, but he also enjoys tight bear hugs. It’s always a question whether he needs more or less of something.

Casey gets hot and cold easily. She can adjust her bath water so it’s not too hot. She will jerk away from hot things and she’ll wear almost any fabric. Sunburn doesn’t bother her and she rarely picks at insect bites.

But – she doesn’t feel pain. She sliced her leg on a mattress spring (it was nearly new – I still don’t know how it happened!) and the only way I knew was she was in the bathroom forever and I went to check only to find her patiently putting bandaids on her leg. It took 16 staples to close the gash.

She is terrified of needles because they hurt, but can stub her toe and not notice. She doesn’t like water pouring on her and food textures are not a problem. She is afraid of bees, but I think it’s because Rob and Mandy don’t like them, so she just follows their lead. 😊

The sense of touch can affect your child in so many ways. Things you never thought of – the seam in their sock, the tags in their clothes, how hard their chair is, whether they can sleep at night or even whether they can concentrate in school. After all, imagine trying to concentrate when all you can focus on is how tight your shoe feels.

It can also be dangerous when a person has hypo-sensitive touch. Just like Rob’s collar bone and Casey’s cut leg – injuries can be severe and they won’t notice. And when an injury does occur, you have to be really vigilant about how it’s healing. They aren’t able to tell you if it starts hurting more or is getting infected. It’s another thing to consider if your child pulls away from you and doesn’t like hugs. It’s hard not to take that personally, but in reality, it’s probably their sense of touch.

If your child is having behaviors, definitely consider everything they wear – what they are sitting on – how they hold pencils. Their behaviors might be as simple as a tag in their shirt rubbing their neck. (Tagless clothes are amazing!) When you have a child like Casey or Rob, who are both hyper and hypo sensitive, it’s difficult to know what is causing the behavior. Like everything else with autism, it can be tricky to discover the root cause. The best way is to write down everything your child is wearing each day and watch for a pattern. It’s a pain to do, but if you can discover the issue, your child will be so much happier! (and so will you! 🙂 )

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Autism and the Proprioceptive and Vestibular Senses

Autism and the Proprioceptive and Vestibular Senses

I’m sure many of you wondered if I knew what I was talking about several weeks ago when I mentioned I would be talking about the six senses. Many people have never heard of the proprioceptive and vestibular senses and they are ones that can really affect people with autism. Rob and Casey both have issues with their proprioceptive/vestibular senses.

Basically, the proprioceptive sense tells your brain where your body is. Like – closing your eyes and being able to touch your nose with your finger. Rob can’t do it. Casey can, but she struggles with it. It also tells you whether your feet are on concrete or grass. Receptors for the proprioceptive sense are deep in joints and muscles. You need your proprioceptive sense for smooth body movements so it is vitally important for all motor skills.

Vestibular sense is more for balance and spatial orientation. It helps you balance on one foot. It’s how your body understand how you are moving – like what direction and how fast, even whether or not you are moving. So many people on the autism spectrum have problems with fine or gross motor skills and these two sense are the reasons why. Just like with the other five senses, a person can have a hyper or hypo sense of their body and how it’s moving.

Rob struggles more with proprioceptive issues that Casey does. He needs deep pressure to help his body know where it is and how it is moving. When he was younger, this was a much larger issue and he often had a weighted vest on or a weighted lap belt in school. I also used wrist weights with him (don’t buy the “sensory ones” – buy ones that people use to work out. The cost is about a tenth of the sensory ones!) when he was struggling to write. As odd as it sounds, his handwriting is beautiful – nearly perfect. His sense of order demanded perfect letters, even as his body couldn’t easily write them. This caused him to have a lot of anxiety and still does at times, but he has learned that he doesn’t have to be perfect. 🙂

Ankle weights (again, go to the sporting goods section!) are also wonderful tools to help someone with proprioceptive issues. Weighted blankets can help them regulate their body and sleep better. Casey loves lots of blankets piled on her, but she doesn’t need them like he does. As a child, her handwriting wasn’t good and it still isn’t. Now, it is more that she simply doesn’t like to write (though this could be a sensory issue) – she loves to color and draw, though. But – writing is a very precise activity where her art is more whatever she likes.

I’m sure Rob’s issues with his vestibular sense were the main cause of his many accidents as a child. He was clumsy and could trip over a piece of string. He fell into our concrete porch steps and needed stitches. He fell down the last few steps into our basement and earned a helicopter ride to a children’s hospital when he wouldn’t wake up the next morning. He jumped down a flight of stairs and broke his collar bone. And the list goes on…. His vestibular sense didn’t help him and he wasn’t afraid of anything. A really bad combination! (How he jumped off the roof of our house and never got hurt is beyond me!)

Rob also used a platform swing when he was in elementary school. It was right in the classroom and he could lay flat on it as he practiced saying his spelling words and math facts. We quickly discovered that what he learned as he was swinging stuck with him. He learned so much easier when he was swinging. The swing moved to the junior high with him, but he didn’t seem to need it as much. The swinging movement calmed his vestibular and proprioceptive senses enough that he was able to concentrate.

Equine therapy was also a huge blessing for both of them. While on the horse, they practiced many things. many of the games involved throwing bean bags at specific colors or shapes (they knew these, but having to throw the bean bag required their body to learn how to do what their mind wanted, if that makes sense – it could be a struggle, especially for Casey). They learned to shoot basketballs with both hands on either side of their horse. “Crossing mid-line” is a big issue. This means their right hand never goes to the left side of their body and vice versa.

A big indicator of a child with vestibular or proprioceptive issues might be when they are writing. If they switch hands when they get to the middle of the paper, you may want to keep an eye out for other signs. An occupational therapist can give you suggestions to help your child. Casey switched hands as a child, but she is definitely right handed now. Rob switched, too, and favors his right hand, but uses his left often.

Fine motor skills, such as cutting, writing, buttoning and tying shoes, can be a problem for children with hyper or hypo vestibular and proprioceptive senses. Casey seems to have worked through her struggles and while she does have problems once in a while, for the most part, she does everything she needs/wants to do. Rob still can’t tie his shoes. I’ll admit, we worked on it for years and years and then decided it wasn’t a battle worth fighting anymore. He might be able to do it, now, but he likes his slip on shoes and will ask for help if he needs, so it’s not likely a skill I will push him on. There are other things that are more important.

If you suspect your child might have vestibular issues, try spinning or jumping with them several times a day. A small trampoline works well or an exercise ball that they can sit on. (Rob sat on one at the desk in his room for several years.) There are also small seats that you can place on chairs that allow your child some movement while still sitting still. Swinging is another great option. Anything that will help your child learn to control the movements of their body (and have fun!) is great. I wouldn’t recommend riding a bike, though – at least not until they have a little more control. 🙂

For proprioceptive problems, try weighted items. Swinging may help with this, too. As with everything else, what works for one child may not work for another. Try something new and see how your child reacts. It is obvious fairly quickly what they like and what helps.

An occupational therapist should be able to give you more ideas on what may help your child. Don’t be afraid to ask – sensory issues are not always the first thing people think of and those issues are often the root of so many problems.

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Autism and Easter Traditions

Autism and Easter Traditions

This has been a busy week for us and there has been a lot of excitement about the Easter Bunny coming. Because tomorrow will be a day of celebrating, family, and fun, I thought I would post today.

Ever since Grandpa Mack’s birthday, Casey has been thinking about Easter. (Tomorrow, after her bath, she’ll start thinking about my birthday because it’s the next “holiday” 😊) We colored eggs last weekend, which threw her off a little. We usually do it the day before Easter. But – little changes like this are good for her.

Coloring eggs is something Rob truly and completely loves so this year, Mandy and I decided to go big and boiled six dozen eggs. She had different kinds of egg decorating kits for Casey to try. Rob is strictly a dip in one color and wait guy.

As soon as Mandy got here, Rob sat at the table to wait. He even followed us outside with the dogs to be sure we didn’t forget exactly what needed to happen. 😊 When we went back in the house, he went right to the table again.

Casey tried a few different things, but she was done quickly. Rob sat for an hour, dropping eggs into the dye, stirring them and laying them on the drying racks when he decided the color was perfect. He doesn’t say much – he takes egg coloring very seriously.

Casey is now happily waiting for the Easter Bunny to come. She wants him to hide 10 eggs with candy in them and she is hoping for a coloring book. Rob hasn’t mentioned the bunny at all. He just listens to her and thinks his deep thoughts. A few years ago, we saw the Easter Bunny in the mall. Casey was over the moon excited and couldn’t wait to get closer. Rob stood with me, grinned and said, “person.” He recognizes costumes, but she either doesn’t or doesn’t care. (My guess is she doesn’t 😊)

He will go to sleep tonight, but she probably will have a much harder time. She may not be able to until she sees that the Easter Bunny has been here – he has to be really quick in our house!

Casey just cut out four dozen sugar cookies and is talking about her Easter shirt and socks (she is wearing Santa ones right now and I wouldn’t be surprised if she wears Christmas or Halloween on Easter! 😊). Rob is building Lego Christmas trees. As you can see, some of our holiday traditions aren’t like anyone else’s and that’s okay!

I hope each of you has a relaxing, joyous and fun-filled Easter. Enjoy whatever traditions you may have and celebrate that they aren’t like anyone else! Happy Easter!

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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 Sensitive Ears

Autism and Sensitive Ears

Since sensory issues are one of the questions I hear most often, I thought the next few weeks, I would talk about each of the six senses and how they affect people with autism. Remember – senses can be “hyper” which means too sensitive or “hypo” which means not sensitive enough.

Because how sensitive their ears are cause Casey and Rob so many issues, I’ll start with hearing.

When Casey was younger, she kept her fingers in her ears any time we went some place new, until she knew what kinds of sounds might be present. It wasn’t just loud piercing noises that could cause her to scream in pain – even low, rumbling noises could be terrifying to her.

It took me a long time to understand why she hated certain restaurants so much. Because of her screams, we just avoided going to them, but finally, I heard it. The HVAC systems were running and she couldn’t handle the noises they made. Honestly, I could barely hear it and probably would have never realized it, if I didn’t happen to see her looking up at the vents with a terrified look on her face. It took years before we attempted those places again (thank God for drive-thrus! 🙂 )

I avoided using the air conditioning in our car when she was young because it was guaranteed to set off screams. Even on the hottest days, we left windows down. I tried once to turn it on and she panicked and tried to get out of the moving car. Again, it was years later before we used it and now, she doesn’t have any issues with it at all.

Casey was 5 when we decided to try Auditory Integration Therapy. At the time, it was best hit or miss, but her dad and I both felt like it was something we had to try. My mom and I took the three kids to Cincinnati for two weeks. Casey was 5, Mandy 3 and Rob just 9 or 10 months old. Yep – we lived in a hotel for two weeks. Casey had hour long sessions twice a day. And she didn’t like it – at all. After a few days, she settled down for them but still was happy to be out of the room.

She started on Monday. Friday evening, their dad and my dad came to spend the weekend with us. Saturday morning, my dad asked Casey what she wanted for breakfast (we always asked her questions – even when she never answered) and she said, “Donut!” I wish there had been a camera on us – four adults were in complete shock. She never answered questions! I couldn’t get her a donut fast enough – I would have given her a box of them if she would have asked.

Over the next several weeks, she needed to cover her ears less and she began to speak a little more. Her words were clear and appropriate. Her painful screams diminished. For Casey, AIT was a success. She still covers her ears at times, but she has learned what might hurt and doesn’t panic and run like she used to.

Enclosed areas with crowds of people are hard for both of them to handle. The dull roar of people talking – the sounds of people moving around – it’s just too much for them for very long.

Rob never put his fingers in his ears like Casey does. When he was little, he wore ear protection (like hunters do) everywhere. The fire drill at school could send him into a curled up ball of tears. Train whistles, parades, certain music – it was all painful to him. He wasn’t able to filter out background noise to hear what I was saying clearly, so many of his words were mixed up. Sammerich (sandwich), to-par (pop tart), and so many others that he switched like first and last letters. He simply couldn’t hear the words clearly.

As he has grown up, his words have become much clearer, but he still struggles with new things. He still doesn’t seem to hear everything correctly – I’ve discovered that by watching him try to spell things as he hears them. Again, this is constantly getting better and is rarely an issue now.

I am still very careful about loud noises around Rob. He doesn’t run from the shop vac, anymore, and doesn’t care about kitchen appliances (Casey screamed any time I used the mixer or sweeper) but loud trucks are sure to cause pain. When we went to a parade a few years ago, a bug truck blew its air horn and he about came out of his seat. He was anxious and scared, so Mandy, Cory and I took turns standing behind him with our hands over his ears so he could enjoy the rest of the parade.

I’m sure I’ve shared before that Rob is my little weatherman. I know when the barometer changes, he can feel it. He knows when rain or snow is coming. About a year ago, I finally discovered he feels it in his ears. I don’t know why or how, but that’s how he knows. His ears can feel the difference in pressure. He also doesn’t like wind – constant wind causes extreme anxiety for him and I’m sure it’s the constant sounds of it that get to him.

When your child is first diagnosed, it may be hard for you to know what is going on with their hearing. It took me a long time to realize what was going on with Casey – at that time, there weren’t a million books about sensory issues to read. Everything I did was by guess and hope for the best. I noticed it much sooner with Rob, as I was looking for it. He loved his headphones (they also provided deep pressure and he loved that) Casey has never liked headphones – whether to protect her from sounds or to listen to music. She absolutely will not use them.

The most important thing to remember is certain noises, even if you don’t hear them or they don’t bother you, are painful to people with hyper-sensitive hearing. Please, don’t tell your child to stop making a big deal of sounds. They aren’t “faking” anything, but simply trying to get away from something painful. A child with hypersensitive hearing may run from sounds, scream, keep their head covered, fingers in their ears or may refuse to go into an area that is too loud for them.

Please keep in mind that your child may have hyposensitive hearing also. They may not acknowledge certain sounds, such as an alarm, or voices simply because they don’t hear them well enough. Your child may not be ignoring you when you talk – they may not be able to distinguish what you are saying.

Everyone has certain sounds that they can’t stand (nails on a chalkboard, anyone?) but we learn to adapt to those sounds or how to avoid them. You will need to help your child adapt or avoid painful noises. You may need to offer ear protection or to avoid certain places. You may need to talk to a speech or occupational therapist for ideas. Casey puts his fingers in her ears often. Rob tends to avoid or run from noises that bother him.

Whatever else you do – just remember that your child isn’t faking. It’s hard to handle sometimes, but it’s your job as the adult to help your child adapt or avoid.

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Autism and a Guessing Game

Autism and a Guessing Game

I’ve shared before that, for me, one of the hardest parts of autism is the guessing games. Is his anxiety worse? Is she sick? Why is he saying his anxiety phrase on the way to Hopewell, now? Does she mean she wants to go or is hoping I’ll tell her we aren’t? Is she tired of the same lunches? Is he?

It’s exhausting. Right now, I’m trying to figure out what’s going on with Rob. He has started several really loud quirks. I need to decide if it’s anxiety or just a habit he picked up.

Their day hab moved to a smaller building right after Thanksgiving. Rob tends to be claustrophobic and I’m sure the smaller rooms (but still the same number of people) is stressful for him. The staff has changed several times and I know he spends at least a few days with a staff person he had issues with a few years ago.

He is very loud when I pick him up some days, but is it anxiety or just that he holds himself together all day and needs to release stress with me – knowing I’ll love him no matter what? Does he need a break from there?

Today, he has been chanting his fast food spiel off and on all day – the one that always ends with him yelling coffee cup as loud as he can. I just noticed that every time I hear him start (fish sandwich, McDonald’s, Coca cola) my teeth are clenched until he yells coffee cup. I’m over it.

I’ve tried distracting him. I’ve tried talking to him. Playing with him. Hugs. Deep pressure. He’s happy to do all of that, but he starts again. Really, it hasn’t been constant – but coffee cup can burst ear drums! Is he anxious? He doesn’t seem to be. Is he bored? He has lots to do, but isn’t interested in any of it. We went for a walk and he was happy to be out, but soon after we got home, he started again.

He has a communication app on his iPad and I tried using that to see if he could tell me what he needed, but we ended up talking about animals and the sounds they make (he loves doing that – and is actually quite good… just ask the people who walked by as he gobbled like a turkey at the park! 🙂 )

I tell myself that we all have days or weeks that we don’t feel like ourselves. But how long do I let this go on? He’s doing so awesome in so many things that I don’t want to change much. And maybe it isn’t anxiety, but just that he is ready for summer and weather that isn’t constantly changing. (Every time the barometer starts changing, he feels it – that would put me over the edge.) Maybe he’s just done with winter. Maybe he’s done with masks and “virus” news. I’m sure he senses how everyone around him feels and that can’t be easy, either.

So we are back to square one. Right now, autism is irritating me to no end. I want to help him, but I don’t know how to help if I don’t know what’s going on. And he can’t tell me. I’m sure he doesn’t realize how loud he is – he’s doing it for the sensory input. Now all I have to do is figure out what I can substitute for the feeling of pressure in his throat caused by the yelling! And I don’t know where to start with that.

I’m sure the long black train serenade has just become a habit for him. It’s a way to transition from place to place and I’m okay with that. We got a new car this week and that’s when he started singing on the way to Hopewell, too – but he does it even in the old car. (I am keeping the older one, too – he asked about it for days, but seems to understand now it isn’t going anywhere). The “coffee cup” thing was only first thing in the morning – a transition from bed to his day.

I’m confused. Next weekend is the time change so that will bring a whole new set of issues. Maybe…. with autism, you just never know, right? At least the full moon isn’t the same night! Thank God for small blessings!

He is quiet and happy now. I know it takes a lot of work to get him to use his communication device correctly so I’m planning on trying that again if he starts yelling again. I’m not sure he can accurately tell me if he is anxious or bored or lonely. Those are hard concepts, even for typical people. But, right now, it’s the only option I have.

I have been told to buy ear plugs or turn up the TV. But I don’t want to cover up the sound – I want to help him feel like himself. That’s the hard part and one I know every one of you completely understands. Autism doesn’t bother me – until it hurts my kids and then I just want it to go away. I just can’t imagine being “trapped” in a body that won’t let me say what I need. I’ve heard other parents say they want to be in their child’s mind for a day. Not me – I don’t think I’m strong enough to handle the things they take in stride every day.

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Autism and This too Shall Pass

Autism and This Too Shall Pass

I just saw a meme that said “And this too will pass. It may pass like a kidney stone, but it will pass” and I laughed way too much at that. Cause that is life with autism at times! Casey and Rob have each had habits that I thought would drive me battier than I am at times. Those “quirks” lasted for weeks…months.. even years – till, all of a sudden, they were gone. Rob is in the middle of a quirk now that I seriously will not miss!

It started out that he just needed to say the whole phrase (it takes about three minutes to get through it all) when he was getting ready to leave in the morning. He lists fast food (he always starts with fish sandwich, McDonald’s, coca cola and progresses from there.) and restaurants. He isn’t loud when he does it. BUT – he ends with yelling “COFFEE CUP!” at the top of his lungs. KFC, Tim Horton’s (Chocolate cake yummy melt) and then coffee cup!

Yeah – it’s funny as heck. I know it is. Until – you are trying to get out of the house in the morning and he can’t put shoes or socks on while he is talking and he can’t be rushed and he won’t change and say coffee cup to end it. Or – and this has been yesterday and today – he says it all day. It hasn’t been constant – but it’s been often. And my teeth are clinching every time I hear him say “fish sandwich” until I hear the yell of coffee cup.

And then I saw the meme and I had to laugh. It’s so true. The odd little quirks that people with autism need to live with can get old quickly, but we can’t do anything but wait for them to decide not to do it anymore.

For a long time, Rob had trouble sleeping. For there to be any chance of sleep, he had to have the TV on (volume off), a night light, a fan, certain blankets and stuffed animals, a light on in the kitchen (I once changed that lightbulb at 3 in the morning!) and his CD player with a song on repeat. If anyone cares to know, I figured it out once. The song was three and a half minutes long – say four minutes with the slight break before it repeated. It played roughly 150 times every night. I tried shutting it off once he was asleep (how stupid was that?!?!). It got to the point I didn’t even hear it anymore – until one night, it wasn’t on. And he was asleep.

I thought the CD had finally died, but no. He just didn’t turn it on and he has never listened to it again. The TV is off (he refuses to let anyone turn it on at all now – God knows why!). He doesn’t care about the kitchen light or stuffed animals. He wants his nightlight and a fan. I had a hard time sleeping without the music for a few nights. 🙂

Casey insisted on doing a rather complicated set of hops, jumps and steps as she went into every door. Which isn’t a problem, really, unless a few of those steps involve jumping back out the door. She shocked many people who never dreamed she would jump back on them as they followed too closely. I learned to walk behind her so she didn’t land on some poor old person and knock them over. She couldn’t be rushed – steps couldn’t be forgotten. I don’t know when it became a quick hop in with a little kick of the other foot, but I don’t miss it. It just stopped one day.

Honestly, the only “quirk” I ever broke for them was Casey wearing gloves. She was 5 or 6 and decided that spring that since she wore gloves all winter, she wouldn’t stop. It was cute for a while. Then it was a pain in the butt, as she would lay the gloves down and not put them away. Soon, a glove came up missing. We were going to my parent’s house and she refused to leave. Mandy and Rob were already in their car seats when she hit the floor screaming and kicking because she couldn’t find her glove. I scooped her up, buckled her in her seat and listened to her scream bloody murder all the way to their house.

As soon as we got home, I searched for the darn glove so we wouldn’t have a repeat (by then it was close to June!). She never asked for it again and the next spring, she stopped wearing gloves when it got warm.

Rob’s “Long Black Train” has been around for years. It used to be his storm song, but now he has to say it – loudly – 13 times when we get in the car to come home. Once in a while, he’ll say it to sing himself to sleep. I won’t miss that when he decides he’s done with it. And I won’t miss him yelling coffee cup!

I don’t miss the impossibly strict routines we had to follow for years (we still have routines, but Casey and Rob are both more flexible about things. Unless there is a full moon, it’s windy, the weather is changing or they are hungry or tired). 🙂 I don’t miss the screams if she didn’t get a picture frame at the store. Sometimes, though, I do miss all three of them as little kids. Despite the hell of autism some days, we had fun together.

So – as you listen to whatever “song” your child needs to hear or say for the thousandth time today or drive the exact same way to school or fix foods the exact same way, just remember – this too shall pass.

Like a kidney stone.

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Autism and Planning for the Unexpected

Autism and Planning for the Unexpected

I think I’ve got good plans in place for emergencies. I’ve got extra meds (except one- it’s “controlled” and I can get it even one day early 🙁 ) food and water. We’ve had a few weather emergencies and I know Casey and Rob will get up quickly and go to the basement. I feel like I’ve thought of everything I can.

Wednesday reminded me that no matter how much you plan, something will pop up to teach you that you aren’t ready. And really, it wasn’t that big of a deal.

I was having severe pain in my lower right side and my doctor wanted an immediate CT scan to check my appendix. I had to drink two bottles of water/dye before and, as I was sitting in the health plex, my mind was racing.

Rob was going to be out of that med Thursday morning. Who was going to order and pick it up? If I had to stay in hospital, how would their lunches get packed (they are both very particular about what is in their lunches)? Where would they sleep? I needed to do laundry. I promised Rob a haircut and Casey a walk. The thoughts were racing.

Now, honestly, none of that should have been bothering me. Mandy and Cory, Mom and Dad, Jeff and Tracie would have jumped in to help. But – I was in pain and trying desperately not to throw up. And tired from not sleeping much the night before. So, of course, everything looked worse than it actually was. But – isn’t that how autism is sometimes? It just catches you off guard and little things become huge things. Something as simple as a lunch packed with the wrong things can trigger a meltdown or an anxiety attack.

No matter how we plan (and seriously, very few people plan better than an autism parent!) something will always show us that we just can’t control everything. Which really stinks when you live with people who need things to be controlled and the same. I do my best not to let Casey and Rob get too into their routines, but it happens. Our evening routine changed two nights a few weeks ago and I was so excited that even with the differences, they both went to sleep.

I am lucky. I have family and friends that can jump in and help me. (Not that I don’t still freak out – Mandy likes to tell me to chill out. 🙂 ) But, I can still plan a little better. I can’t change when the medicines can be filled, but I can write down what they like in their lunches. I have their med lists written down and it’s in the tray with their medicines so anyone can give them the right doses. I have written their schedules in this blog – but mostly, just so people can understand just how crazy our lives are at times. 🙂

I also know that Rob and Casey are more relaxed than many people with autism. This happened only in the last few years so don’t give up hope that your child will relax, too! But still, they like their routines. Rob’s anxiety might be rough if he isn’t sure what is happening. So I struggle to be as organized as possible for them. Honestly, as long as they are with grandma and grandpa or Mandy and Cory, Casey and Rob will probably just go with the flow instead of getting anxious.

But – my advice to you is to plan! Write down your child’s preference in clothing and food. Write down a detailed schedule that your child follows each day. Write down what medications they take and the times and doses. Make a note of what your child likes in their backpack for school and in their lunch. Detail their bedtime routine and what they like to sleep with (such as a fan, nightlight, music, stuffed animals). I also have our doctor phone numbers and their insurance info where it can be easily found. Write down anything that you think might be helpful for someone who is taking care of your child in the event of an emergency.

Sometimes, I’m sure I over – plan (and Mandy is nodding as she reads this! 🙂 ) but it makes me feel better that if someone needs to step in and take care of Casey and Rob, they will have the information they need to keep Rob and Casey happy and safe. I’ll keep making too many notes just to ease my own mind.

You can use a simple notebook to make your lists. Just make sure that you put it somewhere that it can be found easily. Trust me – you will feel better knowing those tiny, but so important, details are written down!

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Autism and Dancing in the Rain

Autism and Dancing in the Rain

I told Casey what the title was and she said, “No fanks. Wet!” Rob just looked at me and shook his head, but honestly, he would be the one most likely to dance in the rain with me. He may think I’ve lost my mind, but most days, he could be close to the truth. 🙂

But, really, when I think of dancing in the rain, I think of being happy no matter what the circumstances you are living in are. You look for the bright side in the clouds and know that rain has to fall so you can see the sun. (If life was always perfect, how would you know? If you had nothing to compare it to? 🙂 )

There are rough days with autism. There are days it is easier to cry than laugh or days you scream into your pillow. Everyone has those days. Sometimes, those rough days last for weeks, months, even. And these are the times that it is most important to dance in the rain.

Dancing in the rain is silly. It’s something a child would do. And sometimes, that is exactly what we need – to be like a child again. Splash through puddles. Color with crayons. Eat Fruity Pebbles right from the box. Have peanut butter for supper. Take a bubble bath. Blow bubbles – finger paint – play with clay. Read a comic book. Watch an old cartoon (Bugs Bunny is the best! 🙂 ) My point is, just for a minutes, let your adult self relax and forget that the laundry is waiting, bills need paid, groceries need bought, lunches need packed, and on and on.

Because here’s the thing. If you don’t dance in the rain and have fun once in a while, life with autism will drag you down. It will exhaust you. It will make you feel incredibly lonely. It will put you on edge. And sooner or later, you will crash. I should know – I’ve been there. It’s not pretty. I’ve had more minor “crashes” than I can remember. And major ones I’d just as soon never think about again. But, if I forget, I might fall back into the same old habits and I can’t let that happen. Casey and Rob are depending on me.

I know it’s hard to get breaks from your child with autism. I have supports and I still find it hard (but honestly, that’s more my issue – some times, I just want to stay home and not bother with taking them somewhere so I can have that break). When I’m tired, it’s just too much effort.

Our life with autism is fairly simple (in terms of autism! 🙂 ) right now. Casey and Rob are happy and doing well. I do what needs to be done to support them without really thinking about it. We stick to a schedule (though, that was altered the last two nights and they did really well!) I know what we need to do if we want to go somewhere and plan accordingly. But – we still have rough times. I still need breaks. I can’t let myself get so down and tired again. It’s not good for any of us.

I know I’ve said this to you before but it needs repeating so you really understand. You have got to find ways to have fun – to laugh – to relieve stress. You need to escape the reality of autism once in a while. You need to find the you that isn’t just an autism mom or dad or grandparent or sibling. You have to be you, too, or you will crash. Being a parent is hard. Being a special needs parent is super hard. Take a break. You need it. You deserve it. I promise – the dust will survive on the furniture and the laundry won’t run away. It’ll all be there when you have the energy to tackle it.

So… for now…. go dance in the rain and laugh! You deserve the fun!