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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 “Kick in the Gut” Moments

Autism and Kick in the Gut Moments

It’s going to happen. As a parent, there will be times that a thought crosses your mind and you feel as if someone kicked you in the gut. The thought takes your breath away – you can’t get it out of your mind. It might be that your child is leaving for college or getting married. But, when you are an autism parent, those kick in the gut moments come out of the blue – and they hurt.

I had one of these moments yesterday and had a good cry. I don’t want to get into a lot of details (though maybe I should so people will understand their actions hurt). I was reminded again that people are scared of Rob. I get it – he’s tall and he’s big. But, he’s also a huge teddy bear and as mellow as anyone can be. I’m assuming that’s why he scares people. But – it hurts this momma to hear it.

I just want people to give him a chance. He gets anxious and it is assumed he doesn’t like someone or something. Just give him a chance to explore the new place or to get to know you. Honestly, it won’t take him long to know whether he wants to be around you. Casey and Rob both sense the “true” person that we often try to keep hidden. If Rob doesn’t like you, he will just act as if you don’t exist. He won’t attack. He won’t hurt you. Give him time to show you how awesome and amazing he truly is. Please.

Honestly, Casey is more likely to get upset than Rob. She doesn’t get upset often, but when she does, the whole neighborhood knows it. And she doesn’t care if she is at home or in a store – when she is mad, she lets everyone know. But because many of the staff at their day hab are new, they haven’t seen this side of Casey – they have only seen the sweet, beautiful smile and the young lady who loves to go anywhere and try anything. They have seen Rob anxious, though, and that’s what they remember.

Many autism parents have come to terms with the fact their child may never get married or have children. They may understand that holding a job might be difficult. They know their child may live with them forever. The thing is – even if their young person has a job and gets married, there are still mean people in the world who can hurt someone without thinking twice and the autism parent feels another kick in the gut. Their child may want a friend – or to be invited to a party – or a job – or a place to live on their own. After all, their older siblings have all of those things – why can’t they? And those questions will bring on the tears again. No matter how many times you think you are done crying, something will happen and bring on the tears.

Maybe the fact that I have a hard time letting new people around Casey and Rob is part of the problem. I just don’t trust easily – no parent with a child who can’t communicate does, in my experience. I want them to meet new people – I just want to meet these people first.

I know that I’m luckier than many autism parents. Casey and Rob are happy with their lives and don’t seem to think too much about Mandy getting married or having her own house. They don’t seem to think about not having a huge group of friends their age. They are happy with their Elmos and signs and socks and cards. They are happy that they get to spend time with Mandy and Cory, Grandma and Grandpa and Tracie and several others.

I feel for the parents who have children with autism who can communicate – who know they are different and don’t like it. It has to be devastating to try to explain to your child that other people won’t be their friend because of autism. Or that they can’t have the job they want because that employer won’t give them a chance. Or that it isn’t safe for them to live on their own.

I know there are more kick in the gut moments in our future. Every life has those moments. I just wish those moments didn’t come because someone wouldn’t give Casey or Rob a chance to show how awesome they are. That is the hardest thing for me – knowing someone only sees “autism” when they look at Casey and Rob and not the amazing individual who just happens to see the world in a different way.

Get to know them. Please.

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Autism and a Sense of Humor

Autism and a Sense of Humor

One of the most common misconceptions of autism is that people with autism don’t understand humor and don’t have a sense of humor. Casey and Rob are constant reminders of how wrong that is.

Last week, Casey went shopping with her friend, Julie. Julie hasn’t been with Casey for very long and wasn’t aware that neither Casey or Rob are allowed to have gum. I have nothing against gum, but they have never understood that you just chew it and then throw it away. It’s an odd concept and I gave up trying. We just avoid it.

Casey is well aware of what she is allowed to have and what she isn’t. She bought a bag of gumballs and proceeded to eat it – all while ignoring Julie’s reminders that you don’t swallow gum. When they came home, Julie was worried. Casey, however… she was grinning ear to ear under her mask and her eyes were just twinkling with mischief. She knew exactly what she was doing. I took the rest of the gum and told her not to buy it again.

She laughed and ran to her room to color. While we were visiting my parents, I asked Casey what she was going to buy with Julie the next day. She giggled until she was shaking as she told me she was buying gum again. 🙂 (She didn’t – but I’m sure she tried. Julie was on to her tricks!)

Meanwhile, Rob was in the store with Bob. He knew he was allowed to buy four things and carefully picked out two packs of cards and was done. But, when they went to check out, he picked up five packs of cards. Bob reminded him he could only have four things (we are constantly working with them to understand money) so Rob put all of them back and went into another checkout aisle to grab cards there. Bob told him he could only have four things and that it didn’t matter which check out aisle he chose.

So Rob stood with seven packs of cards and waited for Bob to decide he was cute enough to deserve everything he wanted. I’m sure he was grinning under his mask. 🙂 He did finally put the cards away and came home. After I heard the story, I asked him about the cards. He laughed and laughed. Again, he knew exactly what he was doing.

They don’t have Hopewell tomorrow, but Bob and Ginny are coming to take them for a few hours. Rob has aquatic therapy, which he loves. Rob asked about Hopewell Monday. I told him it was closed, but that Bob was coming. He was happy – until his grinning sister said “No Hopewell Monday.”

He started to get anxious. I told him again Bob was coming and he could go see Erin. He relaxed – and she said again, “no Hopewell” He started rocking and humming and she just grinned and giggled. So, she was invited to leave the room while I assured him that he was going to see Bob and Erin tomorrow. She laughed all the way to her room.

But don’t think she is the only one who picks. He is just as likely to mess with her. If she is trying to reach something, he will “help” by getting it for her – and then holding it above his head so she still can’t get to it. He laughs – she gets frustrated.

I think some of the assumption that they don’t have a sense of humor comes from the lack of understanding verbal jokes. They take everything they hear so literally that understanding a pun is nearly impossible. However, they both love physical comedy – think Home Alone, the Three Stooges or Tom and Jerry cartoons.

While it is wonderful to see their eyes twinkling as they play “tricks” on people or hear their giggles, having a sense of humor is definitely something you will need, too. There will be days that they only way to get through them is to laugh. Seriously, no one will believe the circus that happens in your home and you might as well laugh about it. I have to laugh about the floor tapping and the light switch tapping and the shower curtain in just the right place and lunch boxes packed with exactly the right items… and the list goes on. Truly, I do know how funny my life sounds. And I would much rather laugh than cry about the crazy little things we live with.

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Autism and Advice Every Parent Needs to Hear

Autism and Advice Every Parent Needs to Hear

So, last week, I shared with you the hardest thing I had to admit – that sometimes, when Casey and Rob were little, autism embarrassed me. I was surprised by the response to that post – how many people thanked me for sharing that. I’m sure everyone feels that way at one point or another, but are too ashamed to admit it. After all, we aren’t supposed to say things like that.

Well, here’s another confession (and one I just talked about with my friend, Joy, yesterday)… autism sucks sometimes. There. I’ve said it before and I’ll keep saying it. There are times when it just sucks.

Does this mean that I’m not incredibly proud of Casey and Rob? No. It means, sometimes, I’m tired and I don’t want to hear someone yelling “Long Black Train” in my ear all the way home. I’ve yet to figure it out, but that’s Rob’s transition phrase from somewhere to home. He has to say it a certain number of times (Honestly, I’ve never counted – maybe I should!) when we get in the car to go home. He never says it in anyone else’s car, but instead starts as soon as they pull in our driveway. Some days, I don’t even notice it. Other days, I have a death grip on the steering wheel so I don’t yell “STOP!” at him.

It means I’m tired of her insisting that she can’t eat leftovers. I’m tired of trying to guess what’s going on when I know they don’t feel good. (She is asleep on the couch now, but I’m fairly certain it’s a sinus issue, but she can’t tell me.) I get tired of the list of fast food places that ends with him yelling coffee cup. (I still can’t figure that out – I don’t drink coffee and don’t use coffee cups – always something different and exciting here. Sorry to our neighbors who sometimes get to hear the yell at 8 in the morning. 🙁 )

I think the hardest part, though, is the stigma that you feel when you admit that autism sucks some days. The terrible guilt you feel. The worry that people will think you mean your kids are a terrible burden that you don’t want anymore, when in reality, all you mean is that you are just too darn tired to think anymore.

It means that autism in the family can be stressful – certain foods to eat, certain routines to follow, certain clothes to wear. For some families, the inability to have a conversation with your children. Casey and Rob are able to answer simple questions and will usually tell me what they need or want, but I can’t ask them what they think about a certain song or movie. I can’t ask what they did at Hopewell that day. I can’t ask if they are happy or what their dreams are. I, like most other autism parents, go with my gut on most things and hope I’m right or close to it.

The weeks that Rob didn’t feel well last month are a perfect example. He had no fever, no cough, was eating like usual…. but he was sleeping 18-20 hours a day. I kept asking if he needed the doctor and he told me no. I asked if his ear hurt – no, itches. Throat? itches. Finally, after a week, I took him to the doctor only to hear Rob was right – no ear infection, no strep. He had a virus (not COVID). Had he been able to communicate more, we might have figured that out on our own. I hate it when autism makes me worry even more about Casey and Rob.

I’m not sure why it seems special needs parents are held to a different standard when talking about their children. Maybe it’s not true, but it does appear that we get handed a lot more guilt about being tired and stressed – when we have more reason than others to be tired. Being a parent is tough some days – everyone should be able to admit it and not feel guilty. It’s normal.

If you need a shoulder to cry on or an ear to vent to, message me. I promise – I won’t judge you for your feelings. Let go of the guilt, the embarrassment and go on being the amazing parents I know you are. Stay tough – but cry when you need to. Admit when you need help. Those of us who are parents to adults with autism have been in your shoes. You will get through the tough days. Practice saying “autism sucks sometimes” – just don’t settle in those sucky days because autism is also amazing and beautiful and special. Good days and bad days – just a typical life, with some added excitement. 🙂

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An Autism Mom’s Hardest Confession

An Autism Mom’s Hardest Confession

This is a hard thing to admit, but I think other parents need to hear it – and to know it’s okay to have these feelings. I hate saying it, but… At times, I was embarassed by autism.

Now, before you get on a high horse and start telling me that no mom should ever say something like that, let me say – I was young, exhausted, inexperienced and the world was different 30 years ago. And – it’s okay for me to have had those feelings. It’s okay for you to be embarrassed or angry or sad or frustrated. It’s okay to let those feelings out.

It’s not okay, however, to take those feelings out near your child. Walk away, take a break, hide in the bathroom. The only thing your child should feel from you is love and pride.

Casey’s deep need for routine and strict schedules caused both minor and major issues while we were out and about. Only once was it a total and complete meltdown (you can read about that here) but there were many, many times she would start jumping up and down, or scream once, or grab onto me and try to shake me. I felt like every eye in the store was on me. She didn’t like being told no and didn’t have the communication abilities to talk to me so she screamed.

Casey and Rob both were runners. I had to put him in the cart in stores simply because I couldn’t keep a tight grip on both of them and still push the cart. (I have to say – even with them taking off, it was Mandy that I actually lost one time. In a water park. I told her to stay in a certain section with us, not realizing everything was connected. She made a friend and wandered off. There were thousands of little blonde girls wearing pink bathing suits! 🙁 ) When they were little, at times, I was embarrassed by the looks I got from people who had no idea why I put him in the cart and had a death grip on her.

Rob’s sensory issues made a the cart a safer place for him and I lifted him into it as long as I could physically get him in – he needed it. The lights, smells and noises in the stores were too much for him. If he was in the cart, he could cuddle under his coat or put his head in his hands so he didn’t have to see so much.

One day, two boys decided to laugh at him about being so big and being in the cart. They chose the wrong day to laugh at Rob. The second time we passed them, they again made a comment and I stopped them. When the lady with them turned to see what was wrong, I explained her boys were laughing at my son with autism. I hope those boys remember that day. And I applaud the mom who gave them holy heck right there in the store with promises of what was to come when they got home.

Honestly, that was the best thing that could have happened. Standing up for Rob and explaining why he was in the cart helped me understand I didn’t have to ever feel embarrassed. I could try to explain and spread awareness. Or, if they weren’t willing to “become aware,” I could simply tell them to go to hell. Nicely, of course. It is really empowering to know you can change some people’s attitude by simply explaining.

Being embarrassed is something every parent, typical and special needs, goes through. It’s a little harder to deal with when people don’t understand why your child (or adult!) is flapping or rocking or humming or bouncing. So – explain to them. You don’t have to share many details – simply say they have autism and move along. If that person still wants to stare or make comments, you have to decide what approach you want to take – be nice, explain more, or be a little meaner. How I handle those times depends on the day. Most of the time, I walk away. When I don’t, I try to be nice. When it’s time to not be nice, I’m not.

If you are like me, you may feel embarrassed more when your child is first diagnosed. As the years go by, honestly, fewer things your child does will surprise you and it’s easier to roll with the flow. Rob still like to repeat numbers or colors or Power Rangers when he is in stores – loudly. I remind him to use a quiet voice and we move on. I don’t think much about it anymore. My guess is you will get to that point, too.

Autism demands that you learn to let things slide (up to a point!). You will learn to ignore stares and comments. You will learn to not take things personally – from doctors, teachers, insurance companies, strangers. You will learn to be stronger than you ever thought you could be. You may not feel it all of the time (I sure don’t !) but you will be.

And maybe, someday, we will live in a world where people are just accepted for who they are and no one will ever have to feel embarrassed by autism again.

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Autism and my Christmas Wish for You

Autism and My Christmas Wish for You

With less than a week to go before Christmas, Casey is getting more excited every day. She reminds me every morning that Santa is coming soon and that she is hoping for a new Elmo. Rob just grins at her, but he never mentions Santa unless I ask him what he wants for Christmas – then he says “Santa.” It took years for us to get to this point and I plan to enjoy every single moment.

My wishes for you are the same as the ones I want. Simple ones, really.

  1. I wish for excitement on Christmas morning, whether it is squeals of joy, flapping hands, or beautiful twinkles of their eyes. Honestly, there won’t be any of that at our house. Casey will be in full-on holiday mode and until everything has happened that she expects for that day, she is unable to fully relax. But, I will catch a small grin as she opens a new Elmo or a whole book of color by number pictures. Rob won’t say a word, either. But, he will carefully peel of the plastic wrap on his new signs and hold them in his lap as he opens other gifts.
  2. I wish for a meal of laughs and fun. I don’t know what a quiet meal is – and imagine quiet dinners would be quite boring, unless you were having a romantic date with your significant other. I wish for food that Rob will enjoy ( he loves ham!) and disposable plates. I wish for my family to be together and for the laughs (and once in a while, a roll or carrot!) to fly!
  3. I wish for tons of pictures to capture each moment – even the “boring” ones.
  4. I wish for an anxiety free day – whatever that looks like for you. For us, that means Casey and Rob have plenty of downtime at home between their dad’s house and my parents’ house. They get to relax and unwind.
  5. I wish for health for everyone. This year, especially, things might look a little different for you. We have small family dinners each year, so that’s our plan for this year. I hope between now and Friday, no one is sick or quarantined.
  6. Most of all, I wish for you – peace, acceptance and love. None of this may look like you once thought, but that doesn’t mean it still isn’t perfect for you.

Merry Christmas to each of you! Be happy, be safe and remember the reason for the season.

With hugs and love,
Jen

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Autism and a Christmas Party

Autism and a Christmas Party

This post is going to be a little different, as usually I’m talking to families or professionals that are with people with special needs every day. This post is for those who have little to no experience with people with autism. Please – print and share this with anyone you may encounter this holiday season!

While Christmas is a very magical time for most people, for those with autism, it can be even more difficult to handle the day to day stress and anxiety. Unlike what many people believe, people with autism do enjoy the holidays – on their terms. They may not be able to tell you what they want for Christmas or tell you what they would like to do, but they want to be a part of the excitement, too. Again, on their terms.

Some may enjoy a huge, loud party with all kinds of food and plenty of people to talk to. Casey and Rob would hate that. They much prefer small gatherings with people they know and are comfortable with. My point is – just because my kids would hate it, doesn’t mean their friend Brandon would. Tyler and Adam like to be the life of the party, while Riley prefers smaller groups. There is no one size fits all – but, please… invite us. We don’t want to be ignored. We may not be able to come or stay long, but you have no idea how happy we are just to be included.

Going to stores can be especially tough during this time of year. The stores are crowded – things are moved around – the music is loud. Sensory issues can can an overload and a meltdown. We don’t need your laughs or your negative comments. Either be kind or get away from us. Trust me – nothing you say will surprise us autism parents. We’ve heard it all. Just remember – our patience is saved for our children, not for you.

Excitement may be hard for people with autism to handle. They may rock or hum or flap their hands or squeal. Be happy and enjoy their excitement – you don’t need to be concerned. Anxiety may be higher and cause more calming behaviors, such as rocking or squeezing their hands or cheeks (Rob used to squeeze his chin as hard as he could when he got anxious. Now he flips at his ears.) Again, you don’t need to worry. Ask if they need help, if you can be kind.

Be understanding if we come to your party and bring our own food. Casey will eat almost anything. Rob won’t. Riley won’t. Tyler and Brandon aren’t as picky. Adam only likes certain things. We aren’t saying we don’t like your food choices by bringing our own food. We are simply hoping that if our children have what they need, we might be able to enjoy your food and a few minutes to eat it.

And – understand if we come to your party looking like we are moving in. We may have a favorite blanket or stuffed animal, an iPad, coloring books, headphones – you name it and we may be packing it. We are not spoiling our kids – we just want them to enjoy themselves in the hopes that we can have fun, too. If you have a spare room that we could use as a quiet space, that would be amazing.

And, please, please, understand that many of our kids believe in Santa forever. Don’t spoil that magic for them. Casey believes in Santa and the Easter Bunny. Rob will talk about both, but whether he truly believes in them or goes along for Casey’s sake, I don’t know.

On last thing – we know our lives can be confusing to those who don’t live them. If you have a question or concern, please ask us. It may be hard to talk about at times, but we would much rather be asked questions than to be ignored. Learn more about autism. Discover how amazing people with autism are. Accept us and you will find the most wonderful love and joy.

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Autism and Christmas Challenges of the Past

Autism and Christmas Challenges of the Past

I have always loved Christmas. But, for many years, December was not always a magical month for us. Kids are always excited about Santa, but autism can throw a wrench into even the best laid plans.

For many years, as soon as Thanksgiving was over, Casey got irritable. Her meltdowns became even more frequent and even when she wasn’t melting, she was on edge. Knowing she was close to screaming kept me on eggshells, too. I knew she was excited about Santa. I knew she had a hard time waiting. What I didn’t know was what the actual problem was.

Everyone always asked her, “Have you been good this year?” Or said. “Santa won’t come if you aren’t good.” She is a literal thinker. I finally discovered – she was never sure she had been “good” enough for Santa to bring her gifts. She thought Mandy and Rob would get presents, but not her.

I won’t lie. I cried when I realized that. How terrible for her to think about that for a month every year and have no way of telling anyone why she was upset. And, of course, every time she got upset, she thought Santa was putting her on the “bad” list. Can you imagine wondering if you are good enough and not being able to talk about it?

To help with the waiting, we made paper chains and every night, they took turns tearing a link off. This was a very visible reminder of when Santa was coming. It helped Mandy, too. This might be worth a try for anything your child is looking forward to. We had calendars with changeable numbers to count down the days, but these really didn’t help Casey or Rob.

Buying gifts was easier when they were little. Rob loved anything with wheels. Casey didn’t play with toys like Mandy did, but she loved getting new ones. She had baby dolls and Barbies and while she didn’t play with them like Mandy did, she liked holding a baby and watching Mandy.

I tried to do Christmas crafts with them. Sometimes, it worked… Sometimes it was a disaster. Rob joined in because Mandy was. Casey might or might not. We baked cookies together. Again, it was hit or miss whether they would help. We didn’t go many places. Stores were loud, hot and crowded and with Rob’s sensory issues and Casey being irritable anyway… Nope, not happening. I shopped while they were in school.

Neither Casey or Rob could wait for anything for very long. We tried to visit Santa. Rob would have nothing to do with him. Casey couldn’t wait in long lines. Now, most malls have specified times for special needs families to see Santa and I think that is so wonderful! (This happens in a non-pandemic world. This year, Santa visits are very different if they happen at all.)

Last night, I saw proof again at how much they have changed. There was a local light display at our fairgrounds and they wanted to go. I knew it would be crowded (it was drive thru) so we left early. We still had to wait over an hour to get in. Casey did sigh deeply several times, but they were both okay waiting. (Honestly, I was more impatient than they wore – I knew we were less than 3 blocks from fairgrounds – no idea why traffic didn’t move when it opened.) I was so proud of them!

To make it even better, Casey got to see Santa and wave to him. (She was very concerned when our parade was canceled about seeing him) and Rob got to see Mater from the movie Cars. Plus lots of lights and inflatables.

Your Christmas season may not be what you want and hope for. But – that doesn’t make it a bad holiday! Instead of looking at others and wishing you could do what they do, start your own traditions. Make your family holiday memorable to you and stop comparing.

Because, there is one thing I am sure of – while you are looking at others and wishing your Christmas was like theirs, someone is looking at you and wishing their holiday could be like yours. Do you. Be unique. Be special!

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Autism and a Magical Holiday Season

Autism and a Magical Holiday Season

Maybe I’m the only one that feels like this, but this year, especially, I want to experience a truly magical holiday season. As anyone who knows me knows – I love Christmas! I love decorating and baking and cards and wrapping – even shopping. But – this year, I want Casey and Rob to really have a wonderful, special season. That’s not always easy when autism is in the family, but I’m determined.

I’ve never been one to leave shopping until the last minute, so honestly, I’ve only got a few things left to get. I’ve got everything for my baking (and the list from everyone of their favorite cookies!) and my Christmas cards are ready to be mailed. I plan on having fun and not rushing around and stressing over silly little details all month. Life has been too anxious for months. We have been doing awesome with all of the changes, but those changes are getting to Casey. She wants her usual magic – parades, dances, shopping. And most of these have been canceled.

So I’ve been on the hunt for things she and Rob would both like to do (and that’s not easy!) that are close to home and don’t cost too much. I have heard that a few towns near us are having parades, but I’m sure there will be huge crowds. Most of me knows it should be safe, but at the same time, why take a chance? Especially if Casey doesn’t realize it’s an option. 🙂 I have found several drive thru light displays near us and these are perfect! Casey gets to go, go, go – and Rob can stay safely in the car away from the crowds he hates.

She is telling me now everything she wants to do – and getting irritated that Anna’s not dancing in The Nutcracker and that we aren’t going to the Zoo Lights and that there isn’t a Christmas parade and how is she going to see Santa? (I haven’t figured that one out, yet – but I will! 🙂 ) So I have reminded her about the light display at the fairgrounds and the drive thru Nativity next weekend and that we are going to another drive thru display next week. She’s happy for now – until she thinks of something else that has been canceled.

This year has been rough on all of us. I’m taking the easy way out for as many things as I can. Instead of stressing about what to get Rob (Casey always provides a long, detailed list of wants!) Santa is bringing just what he loves – metal signs, Lincoln Logs (he finally told me he needed 5 big boxes of these!), Legos and playing cards to rip up. Two more Elmos, a huge pile of coloring books and more socks will be moving in with us.

And here’s another point – buy what your child loves and enjoys! Don’t listen to people who say things aren’t age appropriate! These gifts are to make your child happy – not some nosey neighbor. If your child loves socks (like someone I know!) buy packs of socks. Most 28 year old guys do not want Lincoln Logs. Rob does – that’s what he will get. Besides, I’m sure your child will look at some of the things you want and are thinking “Why would anyone want that?” 🙂

And another – accept what invitations you are comfortable with. Going to a party is supposed to be fun and relaxing. If you know it’s not a good idea for your child, then decline or try to find someone to stay with your child and take your other kids. (Yes – the guilt that comes when you do that really stinks, but your typical kids deserve special time with you, too. And – I learned that many times, Rob didn’t want to go anyway. He always had more fun with Grandpa Mack.)

If you are going to a party, plan ahead for your child’s needs. Bring food they like. Bring head phones, iPads, comfy toys. Whatever they need. Remember – someone who truly cares about you and your child will not care that you do. And anyone who does care isn’t worth your time and energy.

Look for special things around your area to do. Your idea of a perfect Christmas will not look like mine. Your ideas will be as unique as your family. Don’t compare and don’t let anyone tell you that your plans are not “fun.” Please don’t get discouraged if your child doesn’t enjoy your plans. Autism is always tricky – you can rarely be 100% sure your child will enjoy something. And -try new things! Rob always insists on the same little, old Christmas tree in his room – this year, he wanted two trees! You never know when your child will decide that new things/foods are safe to try.

Both Casey and Rob enjoy doing crafts (she flies through projects – he has to decide if they are worthy of his time and effort) and I have several easy ones planned. I have their favorite Christmas story books ready to read. Their trees are decorated and their stockings are hung. It’s time to relax, have fun and remember the true meaning of the season! 🙂

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Autism and My Odd Thankful List

Autism and My Odd Thankful List

Every year, the week of Thanksgiving, I share a list of what I’m thankful for. It’s an odd list, usually, because everyone knows I’m thankful for my kids, my family and friends and my dog. I share the “different” things I’m thankful for – the little things we sometimes take for granted.

1. I’m thankful that, so far, we are all healthy and that the cancellations of COVID have been taken in stride by Casey and Rob. Let me tell you – it wasn’t too long ago that major changes like this would have sent her into constant meltdowns and his anxiety through the roof. While she is getting a little irritated by what’s cancelled (the Christmas parade and camp weekend this week), she’s still being calm.

2. I’m thankful there is a young man on eBay that sells Legos by the shape and color you want. Rob absolutely loves the squares that are yellow and blue and the green and brown rectangles. I can buy each by the pound.

3. I’m thankful that neither of them mind wearing masks. They actually handle it better than me.

4. I’m thankful for all of the crafts and pictures they have been making at Hopewell. While Casey won’t share hers (they have to go in a basket in her room) Rob will share a few. Some must be hung in his room, though.

5. I’m thankful that what they “need” to buy when we go to the store are cheap and easy to find almost anywhere. Coloring books, socks, playing cards, construction paper – all things that make Casey and Rob happy.

6. I’m thankful that some of their super strict routines can be changed without drastic results. (Though, honestly, their evening routine isn’t one I mess with much – I need my sleep! ☺)

7. I’m thankful most junk mail is the perfect consistency he wants to rip up. He rarely rips magazines, anymore, but will grab them to add to his growing collection. So I limit what comes in the house because it’s nearly impossible to get rid of any without him knowing. (How do they DO that???)

8. I’m thankful for his bear hugs and her gentle not-quite-a-hug hugs. (She usually puts her hands on the other person’s shoulders and leans forward.) In pictures, he always throws his arms around people, while she keeps her hands together.

9. I’m thankful they will both fold their own laundry – hers, very precise, his, not so much. ☺

10. I’m thankful for what autism has brought into my life. Not the sleepless nights or meltdowns or other challenges, but the friends I would have never made. The confidence I gained from dealing with doctors and other professionals. The childlike wonder that will never leave our home. The ability to see the world differently – to see only the good and the beauty.

And I’m thankful for each of you that takes the time to read our story each week and follow our circus on Facebook.

Have a Happy and safe Thanksgiving! Look for your little, odd things to be thankful for!