Author: jsjones116@yahoo.com

Jen is the mom of three amazing adults. Her oldest daughter and her son both have moderate autism. She is a freelance writer who is passionate about spreading awareness and hope to families with special needs.
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Autism and Illness – The Sound of Silence

Autism and Illness - The Sound of Silence

Let me say… I’m always ready for a few minutes of quiet – no long black train, no stomping up the stairs, no music blaring, no long repetitive sequences of words. In the last week, I’ve gotten lots of quiet moments and have been worried to death.

Last Sunday, my mom gut told me Rob wasn’t feeling right. I couldn’t pinpoint what was wrong, as he was eating and drinking like usual. No rubbing his ears. But, I knew something was going on. By late afternoon, he had a fever. By mid evening, his fever was over 103 and he still couldn’t tell me what hurt.

So I went into panic mode. I gave him ibuprofen, popsicles and cool rags for his head (which he hated and threw off as soon as I turned my back!). I talked to mom and Mandy and cancelled our plans for Monday. And I tried to decide whether to take him to the emergency room. (he had a seizure when he was little from a high fever – I’ve always been terrified it would happen again.) I paced from his room to the living room where Casey was on repeat “Robbie’s sick. Robbie’s sick. Robbie’s sick.” I took a chance and asked her if she knew what hurt Rob. Then she started coughing, but not too much.

His fever wasn’t coming down, so I put him in the shower. I was surprised he got in as I knew how bad he was feeling. I said again “Tell me what hurts.” No response. “Show me what hurts.” Nothing. Just a completely miserable looking young man.

His fever came down to 101 after the shower. He ate his snack, took his pills and went to bed. Casey kept telling me she was going with Regan to Odd Lots and to get a frosty Monday. And she coughed.

By Monday morning, you guessed it – they were both sick. I called the doctor and said I thought he had an ear infection and she had a sinus infection. We had an appointment quickly.

The nurse practitioner took one look and said she wanted to swab them for influenza. I laughed as there was no way either of them would let anyone put anything up their nose. As proof how bad he felt, Rob never moved when the nurse swabbed his nose. Casey jerked away, but the nurse did manage to get a swab.

In ten minutes, we knew. Influenza A for him. Hers was negative, but the nurse said she was sure she had it, too, but in the earlier stage than him. My busy planned week came to a stand still. They were both contagious. I wondered when I would get it.

They slept all day Monday, through the night and into Tuesday. Rob would eat and drink, but she refused. By Tuesday evening, his fever was 103 again and she was in danger of getting dehydrated. I wondered if the hospital would put them in the same room as I paced from one room to the other. (yeah – I know, but I was tired and stressed and thinking worse case scenario).

I’ll admit it. I really didn’t like autism for a few days. I needed to know what hurt, what I could do to help them feel better and thanks to autism, they couldn’t tell me. I knew I needed to watch him for an ear infection and both of them for pneumonia. She was still coughing. He rubbed at his ears. And I paced and worried and mumbled not nice things about autism under my breath.

Before anyone gets a burr under their saddle, I’m not saying I was upset at kids at all. I just got irritated at autism – it was preventing me from helping my kids and I was feeling so helpless. I hate that feeling. I sat and wished he would long black train. I wished she would stomp up the stairs. I wished the quiet would go away. (That proves how stressed I was – to wish for hours of long black train! 🙂 ).

Thank God, both their fevers finally came down late Tuesday and Casey even took a few sips of juice. They slept off and on all day Wednesday and Thursday. We even had a snow day Friday so I didn’t have to miss any more school.

Casey is talking about going with Regan Monday and riding the shuttle to Hopewell. Rob hasn’t said a word. I just keep hoping they are on the mend. They are both sleeping more than usual and aren’t talking much. Eating is still hit or miss and their coughs sound nasty. It isn’t a constant cough, but it hurts me to hear it.

He finally mentioned Hopewell this morning. I asked if he wanted to go or stay home with Mommy again. He said Hopewell, but then coughed again. The doctor said it would be probably a week before they started feeling like themselves and that secondary infections were a concern, especially since autism prevents both of them from telling me that anything hurts. Today is a week.

I wish I knew how they really felt. They are moving around so I guess tomorrow we’ll try to get back to our normal and let them go. They were both upset last week that they didn’t get to go with Bob and Regan after Hopewell and Rob missed his aquatic therapy. Thankfully, the hospital rescheduled him for tomorrow. I just have a feeling that they will both be exhausted by tomorrow evening. Unless their fevers come back, they will go. And I’ll keep my phone close by in case they need to come home early.

Last week just proves again to be careful what you wish for. I often wish for a few minutes of quiet, but when I got it, I couldn’t enjoy it. I hate it when any of my kids are sick, but at least Mandy can tell me what hurts and if she needs to see the doctor. With autism, it’s just a guessing game and while I’ll admit I’ve gotten pretty good at guessing, I don’t like it. I want to help them feel better, not wonder if I’m doing the right thing.

We’ll see tomorrow afternoon if I guessed right about sending them back to Hopewell. I hope I am. I wish they would just say they are too tired to go. Or that they ache. Or that their head or chest hurts. Maybe some day they will – Rob will tell me at times when his ear hurts and he needs to see the doctor. Small steps. And I’m proud of every little step they have taken.

Stay well! Disinfect. Wash your hands. Avoid people and stay home! 🙂 🙂

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Autism – Why are You Sorry?

Autism - Why are you Sorry?

A few days ago, I was at an event doing a story and three different people asked if I had kids and how old they were. I told them that I had 3 – all adults and that two had autism. And it was like a light was flipped off. The “Oh I’m so Sorry” pitiful look came across their faces and I seriously wanted to smack them all. Why in the world would they be sorry for my amazing kids?

I understand that when people don’t know what to say, “I’m sorry” is an easy go-to phrase, but really, it’s annoying. I’m not sorry for my kids and they wouldn’t want anyone’s pity (unless it was possible that along with the pity came some French fries! 🙂 ) They are amazing, just the way they are. I am one proud as heck mama and they know it. We have all worked darn hard to get where we are – and we don’t need anyone’s pity because of that.

The truth is – maybe I feel sorry for the parents who lose childhood magic in their home when their kids grow up. I can’t imagine how boring holidays would be without the magic of Santa coming – the eyes that twinkle and the giggles at the very thought of his visit. How boring Halloween would be without the difficult decision of what costume to wear and what candy to hope for? What about an Easter basket that magically gets filled by a giant bunny while they are asleep?

The parents that feel sorry for me don’t get to experience the pure joy that a waterfall can bring or how a long hike in the woods can be a journey worthy of a novel. They don’t see the excitement that a new box of crayons can still bring and can’t hear the giggles that Elmo can cause. Their children will grow into adults that worry about jobs and houses and bills. My children grew up to see joy in the world.

It’s not that they are always happy. We all have days that the world is a tough place, but we work through it together. I’m still one of the people that they completely believe in. They will never outgrow wanting to spend time with me (though they both love going places without me, too! 🙂 ). I’m one of the few people they completely trust. Why feel sorry for me about that?

Yes, we may have different challenges than other people, but that doesn’t mean our challenges are tougher to live with at all. It means that we adapt – we change – we do what we need to do. Just like every other parent in the world. Every family has its own unique challenges that others can’t understand. That doesn’t mean we need or want your pity.

Instead of pity, why not ask how the kids are doing? Ask if they are happy or what they enjoy doing. Ask about them – just like you would if you were talking to any other parent. Save your pity for when we can’t see it, because I’ll be honest… some days, some exhausting, rough days.. when I see that pity, it just makes me want to cry. And I don’t need that. I would much rather tell you where Casey volunteered this week or that Rob tried another new food.

I would much rather tell you that Rob doesn’t need to rip magazines all the time so his anxiety must be under control. I’d love to tell you how Casey loves to sing and can’t wait to be in the talent show again this spring. Or I could tell you about the Lego designs Rob builds or the things Casey paints. Fun things are so much easier to talk about. I’ll listen to you brag about your children and I’ll brag about mine.

Save your pity for someone who may really need it. Or, instead of feeling sad for us, get to know us and be our friend. We can always use new friends! Ask questions. Smile. say hi to Casey and Rob. They truly aren’t scary (I always laugh when people ask how dangerous they can be when upset. What can I say? I have an odd sense of humor at times! 🙂 ) Just because they have heard of someone with severe behaviors, they often assume every person with autism has those behaviors. Cause, you know, everyone is exactly alike, autism or not. Ugh.

So, if you are reading this blog just because you are interested, remember to save your pity. Be our friend. 🙂 If you are a person who see that pity face, remember people don’t know what to say at times, so don’t smack them. 🙂 Instead, brag about your children, just like I do! 🙂

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How to Find a Safe Place for your Adult with Autism

How to Find a Safe Place for Your Adult with Autism

One thing I hear over and over again is what to do with an adult with autism during the day. As parents, we know our kids do not want to spend every waking moment with us. Even those who are severely affected need some diversion in their lives. And even if they don’t need a break from us, we definitely need a break from being a parent at times. I know that’s hard to admit, but saying you need a break doesn’t mean you don’t love your child more than anything in the world. It simply means you need to breathe.

As I’ve shared before, we are lucky. We have the services the kids need here in our small town. Yes, I wish there was more to do, but that’s the trade off for living in the town we all love. We had speech therapy, OT, equine and even aquatic therapy. They have a place they love to go to every day. It wasn’t always easy, though.

Many years ago, our county board of developmental disabilities had a sheltered workshop. Casey started going once a week during the second semester of her sophomore year. She loved it and continued doing that her junior year. Her senior year, she went to school Monday, Wednesday and Friday and the workshop on Tuesday and Thursday the first semester and switched days the second semester. The week after she graduated, she went to Hopewell every day.

Rob was already familiar with the workshop, so he didn’t start going until his junior year. Again, he went to Hopewell often throughout his Senior year.

Because I worked for the school that the county board has, I knew most of the people who worked at the workshop and, though I was nervous that no one would like the kids, I was comfortable that they would be safe.

Unfortunately, a few years later, their day hab was privatized. Honestly, I was terrified. Many of the people I knew would be leaving and I was worried that anyone that worked there wouldn’t be there because they had a passion for helping others but because it was a job. Or, worse yet, they wanted “control” over people who couldn’t fight back or tell on them.

Thankfully, Rob’s favorite person stayed (If you ask him about friends, he will say “Bob is my friend.” 🙂 ) and Casey seemed okay with new people. But – I was still nervous and we’ve had some bumps. I’ll be the first to admit, some of the bumps were caused by my lack of sleep and the fact that I get angry and over react when that happens. And sometimes, I’m just so sick of dealing with stuff, that I yell over little things. (I always try to go back and apologize to people – I truly don’t mean it often, but sometimes, everything seems to be too much and I lose it. 🙁 )

So – if you are looking for a safe place for your adult, here are a few tips I’ve learned.

  1. Visit without your adult. Just sat back and watch what’s going on. Is the staff interacting with everyone? Are the attendees actively involved in their day? Is it clean? Accessible for everyone? Talk to administration and ask all of your questions. I promise you – they have heard them all before. If they truly want to get to know your adult, they will be happy to answer anything. Ask about staff ratios. Ask about daily routines. Share your concerns about your adult and see how they react. I told staff that Casey could have terrible screaming meltdowns and watched their eyes to see their true thoughts.
  2. Talk to families with adults in the day hab. While administration may not be able to give you that information, you can ask if they would contact families and give them your contact info. Talk to people who go there and see what they think.
  3. Take your adult for a visit. See how staff interacts with him/her. Show them how you communicate with your child and see if they will try. Again, share any concerns you have. Sensory issues, behavior problems, dietary concerns. You need to be completely honest with the staff if you expect them to be honest with you. Ask hard questions and take notes.
  4. Once you decide where to try, take your adult the first time. Be there as a comfort if they need (Casey and Rob had a aide go with them – they never seemed to want me around! 🙂 ) and leave if they want you to go. Keep an eye on your child the next few weeks and see if you notice any new behaviors that could be telling you they are not happy there or are scared or anxious. If you see anything odd, go talk to the day hab.
  5. Drop in for visits. If you are told you are not welcome to stop in, do not even think about letting your child stay there. Stop by unannounced and see what’s happening. See if your child seems to be interacting and happy.
  6. When there is a problem, immediately talk to administration. Don’t wait and see if it gets better. (I do wait if Rob seems anxious, as he does get worked up about things they have no control over). Ask staff to contact you if they notice anything off about your child. Trust is a two way street!
  7. Make friends with the staff. No one wins if you try to be superior or a witch about your child. No matter what you think, your child isn’t perfect and staff needs to feel comfortable calling you over little issues or they won’t communicate when there are big problems. Always, always, always keep communication open! I can’t stress that enough. I’ll even venture to say that the staff at Hopewell wishes I didn’t communicate as much! 🙂 But, I feel better knowing that they have all the info they may need, whether it’s that my parents are picking up the kids that day or that one of them didn’t sleep well the night before.
  8. If they have family events, go to them. Hopewell has a Thanksgiving lunch and it’s so much fun to see old friends and meet new ones. Parenting a special needs child can be lonely. Sometimes, it’s even lonelier when they become adults as you don’t have school activities to meet other parents, anymore. You need support from others who understand your life.

A word of caution. When you are asking for recommendations, you will hear positive and negative about every place you visit. For each glowing report you hear, you will hear a horror story. Take both with a grain of salt and make your own judgments. When you decide on a place for your child, visit often. Make yourself available to staff. Just remember to follow your own gut – you will know what is best.

Unfortunately, there is no way, barring keeping your adult with you every minute, to be 100% positive of their safety. If you feel uncomfortable around a person or a place, listen to your feelings. I wish there was a guaranteed way to always make sure they are with people who love and respect them – I wish that every day. I look at strangers with suspicious eyes. I hate to admit it, but I often look at new staff the same way. Until I know you well, you are a possible danger to my children. Please don’t take offense. I simply love them more than I care about your feelings. I have to be sure they are as safe as I can possibly make sure of.

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Autism and the Ever-Changing Rules

Autism and Ever-Changing Rules

So many things in our lives are set in stone. Casey and Rob like things a certain way and that’s that. While I might try to change those routines once in a while, I’m often quickly corrected about how I am supposed to do things. Sometimes, though, Casey or Rob throws me a surprise and I saw a few of those this week.

The full moon late the week before really messed with both of them. She was more irritable and he wasn’t sleeping well. Imagine my excitement when I read the new moon on January 24th is supposed to have an even bigger affect on people’s emotions. (While I’m not a firm believed in Astrology, I do know that certain things mess up our emotions and the stage of the moon is definitely one of them!) After last week of them taking turns not sleeping well, I’m too tired to want to think about what this week will bring.

But, I did see a few positive changes last week. I’ve written before that Casey refuses to have her feet touching the kitchen floor when the light is turned on or off. She will hop and squeal and run out of the room. (Actually, it is a little funny at times – and most of the time, she is laughing. I think she knows how silly she looks, but simply can’t help herself!) Last night, we had company and she wanted more chicken dip. I told her she had had enough, but she laughed at me and grabbed a plate.

I went into the kitchen and told her no, again. (I was more irritated at the grin on her face when she did exactly what I told her not to do than I was that she was getting more!) She grabbed the lid off the crock pot, laughed at me and started to help herself. I flipped the light switch and watched her giggle and run to the dining room. She was laughing, I was laughing and so was everyone else. But – she came into the kitchen for more. So I flipped it again. And again, she squealed and jumped back into the dining room. After a few more tries, she finally decided that she wanted dip more than she wanted to be off the floor when the switch was flipped.

Amazing! We just stood and watched her walk calmly (well, sort of! 🙂 ) to the crock pot as the light went on and off. Now, before anyone thinks I was starving her – she had already had 3 huge pieces of pizza, 2 cookies, and two huge helpings of the dip, plus tortilla chips. She was not at all hungry and I was afraid she was going to make herself sick. She was able to get beyond her routine when she was focused on something else. (But – this morning – she jumped a foot when Rob flipped the light on! 🙂 )

We had some bad weather Friday night into Saturday. I’m sure Rob knew it was coming, but he didn’t say a word about it. He wasn’t any louder than usual and not at all worried. This is really out of character for him. My only guess is that he was so tired from not sleeping right the whole week, that he was just happy Saturday would be a day to sleep in. And that tiredness helped him crash Friday night instead of getting worked up by the storm. (I’m so used to him letting me know when bad weather is coming that I was shocked Saturday morning! )

Rob got a weighted blanket for Christmas that he seemed to love as soon as he got it. He pulled it up over himself and seemed to relax with the weight. Now, we have another rule. He can use the blanket (without the cover) only on his lower legs when he is sleeping. If he is sitting in his recliner and looking at his iPad, the blanket (with the cover) can be up to his waist. (I can’t make this stuff up – and I can’t keep track at times! 🙂 )

She still needs to pat socks, shoes, the floor in front of the closet and the closet handle to put her shoes on. He still needs his snack and pills to be waiting when he gets out of the shower. She still needs to wear certain slippers at certain times of the day. He still needs to wear red, sleeveless t-shirts with wind pants. She needs two waffles, he needs three.

So many things never seem to change, but then, all of a sudden, I realize that routines have changed! I have no idea why they relax their needs – I have no idea why other routines take their place. I am just along for the ride most days! 🙂 I think when Rob’s anxiety isn’t so bad, he relaxes his grip on routines and once he realizes he is okay with change, he doesn’t always go back to it. (Now, watch – he will prove me wrong – again!) I do so many things out of habit now that maybe I’m the reason things rarely change and not that they need it to be the same. 🙂

I hope the new moon doesn’t effect your home too badly! Remember to take care of yourself – steal those few minutes of “you time” whenever you can! 🙂

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You are an Amazing Autism Parent

You are an Amazing Autism Parent

That probably sounds like an odd title to a post, but I wanted you to know it. I have no idea what your life is like, but I know enough to know you are tired, stressed, maybe lonely, certainly worried and an amazing autism parent.

Like most people, last week was our first week back into our usual routine and it seemed like it was a month long. Rob was happy to be back to normal, Casey not so much. I went to wake her up one morning, and she said “no, snow day!” 🙂 As much as I wanted to crawl back in bed, too, I laughed and told her to get up. Not long after she got up, a memory popped up on Facebook reminding me that one year ago, we were all home because of a huge snow storm. How I wish I had her memory! (on a side note, it was almost 70 here yesterday!)

The first week back with a full moon and crazy weather at the end. Imagine my excitement! Casey wouldn’t sleep Monday, Rob was up and down all night Tuesday, she didn’t want to sleep Wednesday and he had a terrible time going to sleep Thursday. Yayyy full moon! Thank God, they both crashed Friday and slept last night, too, cause I was tired. Like crying over little things exhausted. (yep – crying meltdown yesterday morning – sorry, Dad!) So – there – for those who message me and tell me I have an easy life with autism… some days, yes, I do. Others, nope, not so much.

So this brings me to my point. I see you. I know you have days when you are crying in the shower (if you have time for a shower!) so no one knows, especially your child. Because you never want your child to think they are the reason for your tears. Or so no one knows that the “strong” person broke. I see you. I get it. I’ve cried in the shower more times than I hope to ever remember.

I know you are so tired that simple things like what to make for supper are more than you think you can handle. There were weeks when Saturday supper was frozen pizza for Rob and me and ravioli for Casey because I knew they would both eat and I didn’t have to think about it. Healthy? Nope… but, sometimes, you gotta do what you gotta do. They were happy and so was I. 🙂

I know that beyond not getting much sleep, you are tired of fighting for services for your child. You are tired of phone calls from the school. You are tired of therapies, doctors, insurance. You are tired of trying to figure out how to pay bills. You are tired of making the same food, washing the same clothes and watching the same TV shows or movies. You are just tired of it all.

But, here’s what else I know. You are doing an awesome job! You may not think it. You may not believe me. That’s okay. I know you are. I know that your child’s eyes light up when they see you. I know you wonder if your child loves you or even cares if you are around. Yes – they do. I promise you that. Your child may never say a word, but they love you. They need you – the imperfect, exhausted you. Just like you need them.

I know that you put yourself last. That all of your energy goes into taking care of your family and home before you think about yourself. I also know that you can’t do that very long. You have to think about yourself or you won’t be able to take care of them. Trust me – I know it’s hard to think of yourself, of spending time doing something just for you. But, if you don’t, you won’t be able to take care of them. I learned that the hard way – I speak from experience. 🙂

I know that you question every decision you make for your child. I know you are lonely and feel forgotten by friends, at times. I know your family may not be as supportive as you want. I know you may have had to limit the time your child spends with some family and that you hurt over that.

But really – for all of you that needs to hear this. You are an amazing autism parent! Every day, you get up and you do the very best you can for your child. You love that child more than you ever thought it was possible to love anyone. You brag about their little steps forward. You try every thing you hear about that may help your child. You do research better than a detective. You ask questions and reach out to other parents who may be able to help you. You are stronger than you think!

Always remember – from one autism parent to another – you are doing a wonderful job! You may not always believe it, but I have faith in you. Be as proud of yourself as you are of your child. Brag about yourself, too. You got this!

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The Adult with Autism

The Adult with Autism

I’ve seen many posts about the need for finding services for people with autism when they turn 18 and legally become adults. According to the law, they can then make their own decisions about everything. As parents of people with autism, we know better.

I often wonder if Casey and Rob are curious about why Mandy gets to drive and have her own house and they haven’t been able to do that. Or do they just assume that’s something other people do – and not something, that legally, they are allowed to do? Do they wonder why their friend Brandon is able to drive and they aren’t? Maybe they think Brandon’s mom is just cooler than me. Or do they know they aren’t able to do it safely?

But, really – how many of us stop and think about whether something we do is safe? And with them having no sense of danger, would that even be a thought to them? Do they want to drive? I’ll be honest – I’ve never asked. Maybe I’m afraid of the answer. Or maybe I’m afraid one of them will just decide to do it one day, since I asked if they wanted to. It’s just another thing I will probably never know.

I am their legal guardian. Neither of them are able to make financial (Rob still believes three quarters is the only money you need – and he rarely spends them. Casey says all money is “dollars” with little awareness of the difference in a $1 bill and a $20. She knows the numbers, but it doesn’t mean anything to her) or medical decisions. Rob is finally able to tell me when he needs to see Dr. Myers, but he wouldn’t understand if a serious medical issue happened. Casey hasn’t told me she needed to see the doctor, yet, but I’m sure she will sometime.

As for living somewhere other than with me, I did ask Casey once several years ago. I didn’t want her to move out, but I was curious about what she wanted. She told me she wanted to live somewhere else. I was shocked and ready to cry that she wanted to leave me – until she told me she was going to move to Grandma and Grandpa’s house with her Elmo and her cd player. Rob will never want to live anywhere else. His room is his safe place.

I do feel guilty sometimes, though. I try to let them make as many decisions as possible. What they want to eat – what they want to wear – where they want to go. But some decisions that most adults make, I still do for them. I tell them when it’s bath time. I take their iPads and tell them when it’s time to go to bed. I tell them when they have had enough to eat.

And the guilt comes. They are adults, after all. In my head, I know they need me to make those choices for them, but in my heart, I worry that I’m taking away the little bit of freedom they have. Eventually, I know they would both take baths and showers, as that is routine (I doubt either consider the reason to take baths beyond routine – hygiene wouldn’t be considered! 🙂 ). And I know she would eat until she got sick and that’s not healthy for her. He won’t eat as much as she does, but he will eat more than he should. I need to monitor their food to help them stay healthy.

I know – some adults don’t care about health and maybe they don’t. But, since they don’t understand how their future could be affected by what they do now, I have to do it. And honestly, some days I really don’t like it. I feel like the meanest mom in the world when I say no more cookies or juice. I feel guilty when I tell them to go to bed – yes, they need it, but I also need some time alone. Am I doing it for them or me? (Some nights, I’ll admit – it’s for me, not them! 🙂 )

I wonder what they think about always being with me or family. Or needing to stay with staff when they go places with their day hab. Do they want more freedom? Do they ever think about Mandy going places alone? Do they feel suffocated by always being with someone? Do they even understand the freedoms that other adults have? In some ways, I am a lucky parent.

Some of my friends with adult children with autism are struggling even more. Their children are more aware of their differences and they want to do the things their siblings and friends are doing. They want jobs, friends – to go places without mom and dad. It’s a whole new level of guilt for the parents. And I do thank God I don’t have to try and explain to Casey and Rob why they can’t do things like their friends. I am lucky.

We have the services they need and I didn’t have to fight with Social Security for years to get their benefits started. I feel for the parents who are fighting for services and feeling the guilt that I feel at times. I pray for the parents who have children who struggle more than mine do. Life isn’t easy at times, no matter where on the spectrum your child falls.

Adding to all of this is the realization that you are aging as your child does. What will happen when you are no longer able to care for them? I’ve decided that I’m going to live until I’m 125 so I never have to worry about them thinking I just got tired of them and left. That thought tears me up inside. I know they will have Mandy and Cory to look after them, but it’s still such a worry. I can’t stand the thought of them being alone or thinking I left. (is it sad that I worry less about the financial part?)

It’s funny. As I sit here writing with tears in my eyes from worry, Casey is laying on the couch giggling and whispering “Adam. Adam.” because today is Adam’s birthday party and she cannot wait to go! It’s so exciting – a birthday party at Pizza Hut! Her biggest concern today is whether there will be cake there. And I know I need to take a lesson from her. I need to stop overthinking things and just enjoy the magic that will always be in our home because they have autism.

We will have tough days, but … the magic! The excitement of going hiking with Tracie! The joy of Santa Claus! The happiness that Elmo can bring. The thrill of buying a huge box of crayons! Dollar store shopping trips and fries from McDonald’s. No worries about bills or perfect clothes. No drama. Just the simple magic that life brings them. Maybe learning from them should have been my New Year’s resolution.

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Autism and End of the Year Thoughts

Autism and End of Year Thoughts

Happy New Year! As Casey has been reminding me since Thursday, “Tuesday, December is all done.” Yes, Casey. “Wednesday is January” Yes, Casey. “Tuesday, 2019 is all done!” Yes, Casey. “Wednesday 2020” Yes, Casey. Over and over and over. 🙂 Is it just me or does 2020 seem like it should be a futuristic movie setting? It sure makes the 1999 seem like a million years ago. To me, anyway.

I hope each of you had a wonderful Christmas. Ours went as planned and expected which is always good. The only thing that was odd was the terrible fog we had on Christmas Eve. It lasted all day and through the night. Our drive to look at Christmas lights was severely shortened because we simply couldn’t see the lights on the houses (and honestly, it was terrible driving!). Casey seemed to be getting agitated after her bath, which is odd for her on Christmas Eve.

Until she was finally able to tell me it was foggy. I agreed but told her we were safe at home and so were Mandy and Cory. Then she mentioned Rudolph! I got it! I had to laugh and tell her I was sure that Rudolph would be able to help Santa that night – she didn’t need to worry. She giggled and went to bed. And went to bed again about 30 minutes later. And 45 minutes later. And 15 minutes later. Finally, at 12:30, I told her she had to stay in bed so I could go to bed and then Santa would come. I tucked her in, Santa came, and I heard her on the steps again.

I saw a light flash on, turn off and her running back to bed. I had to wake them both up at 9 the next morning to open their gifts. Apparently, she could only sleep once she knew he had actually made it! 🙂

Now that the excitement of Christmas is somewhat over, she is talking about New Year’s Eve. We are trying something different this year. Mandy and Cory are having a party at their house. This will be the first time Casey and Rob have ever gone anywhere on New Year’s Eve and I’m wondering how it will go. When we stay home, they take baths as usual, even with company here, eat snacks and go to bed. I think she stayed up one time, but they really could care less.

I’m going to make sure they have their bath/shower before we go to Mandy’s so they can just go to bed when we get home. I really, really doubt we stay until midnight, but you never know! They both constantly surprise me and this could be another of those times. Honestly, once Rob decides he is ready for sleep, that’s it. He may be sleeping at their house! 🙂

I just asked Casey what she would like to do in 2020. She wants to go to Walmart and McDonald’s (she got gifts cards for both for Christmas), go to the Cincinnati Zoo (and told me we went in June 1993 – which we did!) go to a hotel and go with Tracie. She doesn’t worry about losing weight, earning more, doing more…. blah blah. She is only concerned with fun things – and how I wish to be more like her!

I have things I want to accomplish in 2020. But when I looked at my list, I hadn’t written fun things. Who wants to accomplish only boring things? Where is the motivation? So I tossed my list away. I do want to write more, as that is fun to me. I am going to walk in the rain. I’m going to read more. I’m going to craft more and spend more time with my friends. I’m going to spend more time playing with Blue and laughing at the birds in my back yard.

Rob’s list is to go to Mandy and Cory’s house, go to Grandma and Grandpa’s house and go swimming with Tracie. Again, fun things. We all need to take a lesson from our kids.

I bet if you could ask your child with autism what they wanted, it wouldn’t be to lose weight or work more hours. It would be to enjoy the spinning lights of their favorite toy or to swing higher than anyone thinks is safe. It will be to stand under pouring water or sit by a waterfall. It would be to lay under heavy blankets and to squeeze play doh. It would be to throw away all of the “yucky” food and uncomfortable clothes. It would be to watch favorite movies and listen to favorite music.

We have so much stress in our lives that adding New Year’s resolutions is just crazy. For your resolutions, learn from your child. Choose fun over boring. Decide what would make you happy and go for that. Seriously, your life is stressful enough without adding more pressure to be perfect. Choose grace to be imperfect over the guilt of perfection.

You will never be stress free. Our lives are just simply different and everyone has a different kind of stress. Dealing with doctors, insurance, schools and therapist every day takes a huge toll on you. Trust me – been there, done that. Luckily, that’s not happening as much these days and I thank God for that.

So this year, resolve to do something for you! It doesn’t have to be a big thing – just something that makes you happy. A few minutes of happiness each day can change your whole attitude and we all need that.

Happy New Year from our circus to you. May you all have a safe and happy holiday!

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Merry Christmas from Our Autism Circus

Merry Christmas from our Autism Circus

Christmas is only a few days away and Casey and Rob are getting excited. She keeps peaking at gifts to see the ones with her name on them. He is building Christmas trees with his Legos.

We went to their Christmas dance a few days ago. Mandy and Cory are coming after lunch on Tuesday to open presents and they know where they want to look at lights that evening.

We’ve watched Rudolph, the Grinch, Frosty and Charlie Brown. They have laughed at Kevin in Home Alone.

Cookies are made. Candy is made. They are having a Christmas lunch at Hopewell Monday and Casey has a new Christmas shirt to wear.

We plan to relax through our holiday and not rush from place to place. Casey will do her usual poses for pictures. Rob will wish I would get the camera away from him. She will be serious all Christmas Day until her “list” is complete, then she will laugh and smile.

Our wish is for each of you to have an amazing, relaxing Christmas – one that is perfect for your family! Maybe that means chicken nuggets for supper or bags of pretzels for presents.

Please, don’t compare your holiday to anyone else’s! Every family has their own traditions and struggles – what might look perfect from the outside probably isn’t. You can’t know what stress other families are under.

Do what’s best for your child and stay away from negative people. Enjoy the smiles and love you see in your child’s eyes – even when you can’t hear them say it.

We are so blessed to have all of you with us on our journey with autism. Merry, merry Christmas from our circus to yours with love and blessings for peace and joy.

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Autism and Checking off the List

Autism and Checking off the List

Yesterday, I saw Casey’s “serious” holiday look. It happens when she starts thinking about her official list of what needs to be done for Christmas and other special days. She can get irritated if she feels I’m not following her list closely enough – or if I’m not doing things quick enough for her. Thank you, autism! 🙂

Luckily, the look went away quickly. I’m not sure what she was thinking about but she was giggling and happy within a few minutes, so I really didn’t care!

I took them shopping Thursday evening. As soon as we walked in the store, Casey took off for her first gifts. While I’m not going to tell what anything is, now, as some of the people she bought for read this blog (and one is writing it! lol – they always buy what they want to give me when I’m with them! 🙂 ). Anyway, I understood her reasoning for Grandma, but she had to tell me why she picked out Grandpa’s. Mandy’s is sparkly, mine is cute and Cory is a boy, so no sparkles. She picked out a squishy toy for Rob (they never pay any attention to what the other is doing) and when I asked why, she said because he squeezes. Yep – she’s right. 🙂

Rob waited patiently, but as soon as I asked what he wanted to get, he grabbed three of one thing (I knew these things had caught his eye as few weeks ago) – Grandma, Casey and me. Mandy got something different and he carefully picked out certain colors of another item for Cory and Grandpa. He was serious about those colors, too!

They got to wrap their presents yesterday and Casey is beyond happy that there are 3 presents under the tree for her, now. Rob never looked at the pile. He rarely does – it’s not time to open them. Even on Christmas Eve, he waits patiently for his gifts to be handed to him. Casey won’t touch the presents as long as she can read the name tags on each. And she carefully reads them over and over – just to be sure no new ones have been slipped under there while she isn’t looking! 🙂

I think we are coming close to checking off everything on her list. We are going to the Christmas dance Thursday evening – we’ve shopped and wrapped. We are making a craft later today with Mandy and baking cookies and candy next weekend. We’ve seen a drive thru light display. She mentioned going to the zoo and we have plans for that, but the day we planned on going is supposed to be bitterly cold, so that may change.

I wonder what is on holiday lists of other people with autism. I’m sure they each have their own ideas of what an “official” holiday looks like and what they would like as presents. I love the traditions that the kids look forward to each year – I just wish Casey wasn’t so strict with each of them. I wish she could relax and enjoy each a little more. I know she loves and enjoys each of our traditions, but she rarely smiles during any of them. I get the smiles after – when she is sure it happened exactly as she wanted it to.

Casey and Rob never spend much on their presents for others. Their reasoning may seem a little odd at first, but we can usually understand why after a few questions. They pick unique gifts and it’s obvious that they have thought about it. One year, Rob crawled around on the floor of the store until he found a bag of Funyuns for Grandpa. (I didn’t know my dad even liked them!) Casey likes to make gifts (No idea why she finally decided to buy her gifts this year!) but when she does buy them, she has a careful plan.

If you take your child shopping for gifts, you may not understand their reasons for purchasing a certain gift, but know that your child has perfect reasons – and you would probably get a laugh at the way they think and their choices. I know I’ve laughed at Casey and Rob’s reasoning before, but it does make perfect sense.

I hope each of you survived the full moon/Friday the 13th/2 weeks before Christmas storm. We did okay – they had trouble going to sleep a few nights, but nothing major. Thank God! The dread I felt when I saw the full moon and Friday the 13th … oh man – the dread. I know each of you understands exactly what I mean!

Remember to take care of you in the next few crazy weeks! Your child will feed off of your stress and you’ll be both be unhappy. Take time to breathe and read a Christmas book. Even if your child isn’t sitting still, they are listening. Read it for your enjoyment as much as theirs!

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Autism and Crazy Christmas Tension

Autism and Crazy, Christmas Tension

When Casey was little, December was never a good month for her. For years, she started acting out and having meltdowns near the first part of the month that lasted until Christmas. I could never understand – we stayed with our same routine. We didn’t go overboard with activities that she couldn’t handle (while all the time making sure Mandy got to do what she wanted during the holidays.) I love Christmas, but I dreaded the month for years.

She finally started relaxing, a little, in her mid teens, but she still has an exact list of what she wants to happen and she will remind me of that list often. When she was in her early 20’s, I finally learned why December was so hard for her all those years ago and it about broke my heart.

Santa. She was never sure she had been “good” enough for Santa to bring her presents. She knew her behaviors weren’t acceptable – she knew I was upset. She knew she shouldn’t scream and beat her head. And she knew Santa wouldn’t like it. So she worried that Santa wouldn’t bring her any presents because she was “bad.” (Let me say right now – I NEVER called her bad for her meltdowns!! I was stressed and I cried about it, but I never told her she was bad). I could still cry thinking about all those years that my sweet little girl worried about Santa not being happy with her – and not being able to tell anyone what was wrong, so she screamed. She ran from teachers. She beat her head on walls. The month seemed endless at times.

I only found out what had happened because of Casey’s incredible memory. We were reading a Christmas book one year and she said, “bad.” I told her she wasn’t bad. She looked deep in my eyes and said, “Screaming bad!” I told her that screaming hurt my ears and she needed to tell me what was wrong instead of scream. Still looking so serious, she said “Screaming bad, no Santa!” and I finally knew – ten years later why she had such a hard time in December.

Everyone, everywhere is telling kids to be good or Santa won’t come. Imagine how you would feel if you thought you were a bad kid – that your sister and brother were good, because they didn’t scream – and you couldn’t tell anyone that you were scared Santa wouldn’t like you? How sad. I still get choked up thinking about that. What could I have done differently? What could I have said that would have alleviated her fears? And why didn’t I know it then? (nothing like a nice load of mom guilt for the holidays, right? UGH!)

I’ve let go of the guilt now. I still wish I had known, but I can’t change it. Casey loves the entire holiday season now, so she wasn’t scarred for life over her misconceptions of Santa. But, still…. sometimes, autism sucks.

Casey is well into her list of needs for Christmas. She has reminded me about 100 times since noon yesterday that she wants to go see Christmas lights tomorrow. (WHY did I tell her I was thinking about going???) We had a long discussion about where we were going to go (It’s posted on our Facebook page) and what we would see. She is excited – another thing to be checked off her list of “must-do’s” for the season.

She watched me wrap a few presents earlier today. I asked if she was going to make her presents this year or buy them. “Make.” ok – what do you want to make? “Ornaments.” Ok – do you want to paint them or use foam pieces? “Paint.” Ok – I’ll get you some and you can make them. “Buy!” Yes, I will buy some. “NO! BUY!” You want to buy your presents? “Yes. Shopping.” OK – we’ll go shopping. “Paint?” Casey – are you going to buy or make your presents? “YES!” and she giggled and danced out of the room. I have no clue what she wants to do.

Meanwhile, Rob heard the conversation and said “Cory? Mandy?” Yes, Rob you can buy them presents. He laughed and went back to his iPad. He keeps life simple. He won’t remind me constantly that we haven’t shopped, yet. He’ll go whenever I’m ready. He’ll wrap when we have time. He may or may not tell people what he got them. 🙂 He’ll go see lights and the only thing he’ll remind me about is that he would like a snack from somewhere.

Casey is laying on the couch now, giggling about the Christmas dance next week. She looked at me and reminded me that she needed to wear her light up necklace and head band. And a Christmas shirt and Christmas socks. I told her I wouldn’t forget (like she would let me!) and she went back to her iPad. Another thing on her list that we have to do every year.

The holidays may be hard for your child, too. You may see more behaviors. You may hear more screams or less sleeping or their diet may change. While you are looking for possible reasons why, look outside the box – sometimes, way outside the box. Whatever is bothering your child may have nothing to do with Christmas at all. If I’ve learned nothing else from 30 years of living with autism it’s to expect the unexpected and to know that nothing is too far outside the box to be true.

I’ve tried some weird ideas to help the kids. Some worked, some didn’t. The point is – be open to trying the strangest things. If your child can’t tell you the problem, how can you possibly know the answer? Just like with Casey and Santa – I never guessed that was her problem. Don’t limit yourself – you never know what might work for your child!

Casey is back. She just reminded me that I told her we could do a Christmas craft today (and yeah – I completely forgot! 🙁 ) She also reminded me that we are going to see Christmas lights tomorrow and see more on Christmas Eve and that we are making cookies with Mandy on the 22nd. Oh – and the dance is the 19th. Time to distract her with pretty papers before she really gets going on her list of plans for the holidays!

Have a great week, everyone! Take time to breathe and enjoy the peace of the season!