Tag: autism mom

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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

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 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 the Perfect Storm Weekend

Autism and the Perfect Storm Weekend

You all know what this weekend brought to us – a blue moon (second full moon this month!), Halloween, the time change and crazy wind. I’ll be the first to admit I was dreading this weekend. Earlier in the week, Casey was irritable and Rob was anxious and loud at times. I knew it was the effects of a moon that wasn’t even full, yet.

The last six times we had to change the clocks, Rob spend that Sunday in Casey’s room yelling his long black train anxiety song for hours – like all freaking day with breaks only to eat and shower. I was almost in tears thinking about that happening today. It’s amazing how stressed a body can get listening to the same phrase 2 – 3 times a minute for 12 hours. I was tense this morning before he even woke up. I was even hoping he would sleep in a little later, even knowing that might mean he would have a hard time going to sleep tonight.

Casey wanted everything she thinks needs to happen for it to be the “right” Halloween. But – there was no dance. She was okay with this as I decided to have a Halloween party (just for a few family) but she was concerned about trick or treat and carving her pumpkin. I’m not sure why carving the pumpkins was on her mind, but she asked many times and every time, I told her we would do it on Thursday. They both enjoyed carving (and were done in about 10 minutes – the same faces every year! 🙂 ) and she started asking about a party at Hopewell and the treats she wanted to take.

I had already dropped off the treats they each wanted to take, so she switched to the costume she was going to wear. Since her fairy costume had many pieces, I told her it would be best to choose a different costume for Friday so she would have everything for Saturday night. This worked and finally, Friday, she seemed to calm down and be okay.

Rob had moments of anxiety, but nothing too bad through the week. I knew the weekend would be the hardest on both of them, but Saturday was fine. She was excited about passing out candy to trick or treaters (thank God a few showed up – we only had about 15!) while wearing her fairy costume. He couldn’t have cared less about the little kids, nor did he want to put his clown suit on. When he saw others in costume, he put on his clown hat and tie for a few minutes, but then he disappeared into his room to build Christmas trees with Legos. He didn’t even try to get any food.

I kept them up a little later last night in the hopes that they would sleep in today. She was up and down all night, but thankfully, didn’t wake anyone but me up. After he went to sleep, he came to find me to tell me his toe hurt. I have no idea what he did but he wanted medicine and a band aid and went back to sleep. Last night was fun – being around my family always makes me so happy. We laugh and tease each other constantly, but they are my biggest supporters. 🙂

I was busy when they finally woke up and could feel myself tense up when Rob came to me for his pills and breakfast. But, he leaned on me for a minute, patted my head and went back to his room. I went on cleaning, but I was still tense – just waiting for him to run upstairs and start yelling. And…. it didn’t happen. Let me say that again…. it… didn’t… happen. He played with his iPad, built more trees and had lunch.

Then he took a nap. I was worried he was sick, but he said he was tired. I put more medicine on his toe (he has a small cut on it) and let him sleep. When he woke up, I thought the long black training would start, but it didn’t. I could finally feel myself relax a little. Even though his habit of time change weekend has been the same for the last three years, today, so far, he is fine. Even with the wind threatening to blow us away, he is fine. He hates weather changes and today, it’s blowing and rainy, then blowing and sunny and then back to rain. And he seems fine. Thank you, God!

So here’s what I want you to remember from this post. On your terrible, rough days, remember things will change. Your child will suddenly decide not to do whatever it is that drives you crazy. It won’t be on your time frame, certainly, but it will happen. You don’t have to think about how you will handle this in the future because, trust me, they will think of something different. Just to keep you on your toes, of course.

During the times you are simply exhausted and frustrated with a world that can’t or won’t understand your amazing child, take a deep breath and know that changes will happen – usually when you don’t expect it. I never dreamed that Rob’s time change habit would change during a weekend of complete upheaval with a holiday, a full moon and crazy weather, but it did. I don’t care why. I’m just so glad it did. I’m so glad I could let go of the tension and take a few deep breaths.

I wish I could snap my fingers and relieve your stress, but I don’t have any magic. I don’t have any words of wisdom that will help your child instantly. All I can offer is hope from someone who has “been there, done that.” I know it isn’t much, but please, never give up hope. Your child may change as quickly and as unexpectedly as Rob’s time change habit!

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Autism and Halloween Fun

Autism and Halloween Fun

I’ll be the first to say – Rob never enjoyed trick or treating. He didn’t like the costume (I was careful to pick something simple for him to try). He really didn’t like going up to strangers and he didn’t care about the candy. Mandy loved going. Casey wanted the candy, but her desire to go had more to do with “it’s what you are supposed to do” than any real understanding of it. And, when they were little, autism wasn’t well-known. I heard many comments about them not saying “trick or treat” or her trying to grab a certain piece of candy. I don’t miss it. The only times I remember Rob really enjoying it was the years my brother brought his 4 wheeler over and pulled them in a wagon. Rob loved that! (He may not look like in the picture- he was ready to ride and not sit for a picture! 😊)

When they got a little older, there wasn’t trick or treating for a few years and then I told Casey she was too old to go. I bought a little candy for them and we visited grandma and grandpa on trick or treat nights. Two years ago, she wanted to pass out candy and looked forward to that for weeks. The big day came and she laughed and giggled for hours. It was a cold, damp evening. She handed out candy to two children and said she was done. Guess who got stuck handing out the candy? (It had to go – we had too much to keep around here! 🙂 )

It also helped that our county board of DD held a Halloween dance every year and they got to wear their costumes to Hopewell. She still asks about trick or treating, but only for “da widdle kids.” Of course, this year, their dance had to be canceled so I decided to have a little party here. (No worries – only a small family group. 🙂 ) Casey is very excited about it and wants to pass out candy before it starts.

Holidays can be so hard for families like ours. Our kids don’t always understand that others think they are too old for some things. Personally, if your adult/teen child wants to go, take them! If someone doesn’t like it, tough. These days, most people are more aware of disabilities and are much more accepting. And you can always “educate” the idiots who choose to say something mean to your child. Some people have purchased blue pumpkin buckets (for autism) for their children to use. Others feel this isn’t necessary. Again, you need to do what you feel is best.

I am a firm believer in Casey and Rob getting to try everything they want to try. If Casey truly wanted to go trick or treating this year, I would take her. The people in our neighborhood would be happy to give her a piece of candy and I so appreciate all of them for that. Honestly, she just wants to celebrate the holiday in whatever form we choose. I did buy candy to hand out and I’ll let her try that in her fairy costume. He chose to wear a clown hat and tie this year. (And he has worn that hat many, many places already! He’s easy to spot! 🙂 )

We have our own traditions for enjoying each holiday and that may be what you need to do, too. If you are truly worried about the reaction your child may get trick or treating, talk to a few neighbors beforehand and explain the situation. That way, you can relax and enjoy watching your child try something new. Or go to a “trunk and treat” that many organizations have. These are often held in the afternoon and in a smaller area so it might be easier to keep track of a child who tends to run.

Maybe your child would enjoy passing out candy. Or decorating a pumpkin with paint or stickers instead of scooping out that yucky stuff. If your child can’t wear a costume, decorate a shirt for them or choose a silly hat. There are so many options to make this holiday fun and relaxing for all of you! Don’t feel like you have to follow everyone else’s ideas. Our lives are unique and our holidays should be, too! The smallest thing could make your child very happy – don’t compare what you did as a child to what your child might enjoy. Keep things simple for all of you!

As for us, we’ll be carving pumpkins this week. As much as Rob hates getting his hands gooey, he loves carving pumpkins. They will both carve the same faces in their pumpkins that they have for years. He might surprise me as the pumpkin he brought home from Hopewell is different, but I’m guessing someone else drew the face. Maybe not. He’s constantly surprising me these days.

Happy Halloween to all! Be safe and have fun!

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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!

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Autism and Medicine Changes

Autism and Medicine Changes

At their doctor appointment a few weeks ago, the neurologist and I decided to reduce one of Casey’s medications. We did it last year and she had no issues and were hoping this year would be the same. This medication can cause an increase in appetite and weight gain, so lowering it would be wonderful. Plus – as grateful as I am that their medications help them, I would love to reduce the amount for both Casey and Rob.

So, at bedtime, I reduced one of her medications by half a milligram. Not much, but thoughts of her being upset all of the time were in my mind. Until we figured out the best medications for her when she was younger, she was not a happy child. Meltdowns were terrible and while some were definitely sensory related, others were simply because life didn’t go as she wanted. She needed a strict routine with no changes. And life simply doesn’t work that way.

Last year, their appointment was after our county fair. For those who have followed us for a while, you know how important the fair is to both Casey and Rob. Those days of riding rides were amazing to them. The rides decreased Rob’s anxiety and helped his proprioceptive senses calm. The more a rides spins, the better they like it. And the fair was somewhere they could both enjoy, despite the crowds and the noise, up to a point. I always knew when it was time to go because they starting shutting down. Their eyes told me.

So, the last time we tried a med change, it was after a week of fair and their Halloween dance was in a few weeks. Life was good – it was as it was supposed to be.

Which brings us to this year. Their appointment was before our fair is usually scheduled. By then, both of them knew the fair was canceled, but Casey hadn’t really accepted that there wouldn’t be a fair. She understood “cancel” but she was still hoping. They have given up so much this year – this seemed to be the last straw for her.

So I reduced the med and started watching for reactions. I knew it would take at least a week (this medication builds up in the body) before I would see much of a change. The day after their appointment was the day the fair usually starts. And Casey was irritable. Not full blown meltdowns or even screams, just irritable and on edge. I knew it couldn’t have been the med that quick and tried to reassure her that we had lots of fun stuff planned for October.

They both had fun shopping that weekend and picking out the rest of their Halloween costume pieces. We talked about our Halloween party (since the dance was canceled, I thought we would have a small party so they would have somewhere to wear their costumes.) We talked about going hiking and seeing the pretty leaves. They both were happy.

But, she is still on edge. She wants the fair. She wants her dance. She wants to clean up the fairgrounds and look at Christmas lights and go to Mandy’s and go see scarecrows and go swimming and go to McDonald’s. She is jumping from one thing to the next and is fixated on odd events – like cleaning up the fairgrounds. I’m not even sure what she means. Unless it is that there were food stands there and she saw trash. (they did get some “fair food” one evening.)

My concern now is – are her fixations from the medication reductions or is she just fed up with all of the changes? Is it because she desperately loves the fair and looks forward to it all year? Or is the smaller amount of med too little? I want to wait a while before I give her the med back. I’m so hopeful that the farther we get from “fair” week, the happier she will be.

I miss my giggly, goofy girl. She still is, to a point, but that edginess is there and pops up at strange times. Ten minutes ago, she was repeating phrases over and over, trying to get me to tell her when we would go look at Christmas lights and now she is giggling at Elmo on her iPad. So, we wait and see.

I hate medication changes. It’s nearly impossible to guess whether the medication is needed or she just needs time to adjust to life with COVID. Medicines rarely have immediate effects. Many have to build up over 2 – 3 weeks. The waiting game is hard – is it helping because they are happy or has something happened that makes them happy that they can’t tell me? Is it not helping or has something else happened that they can’t explain. I don’t like the guessing game – or the waiting game. And, unfortunately, medication changes are both.

Unless she gets increasingly irritable or edgy, I’m going to wait until November to make any changes. That will give her body plenty of time to adjust and we will be far away from fair week and through Halloween. I don’t know what else to do but wait, as decreasing the med will be so beneficial to her, if it is possible.

My best advice to you if you need to start or change a medication is to keep a detailed diary of what happens. Write down any behaviors (irritability, inability to sleep, increase or decrease in appetite), but also include any changes that happen at school or in your home. Write down the weather – every detail of your child’s day. That will help you determine whether the med is helping or not. It’s time consuming, but it is needed. You can also do this to help determine if your child needs to start a medication. It will help your doctor to see exactly what your child’s day is like.

For me, I’ll make a list of things to tell Casey we can do and try to keep her mind off of the things we can’t. And wait and see how she feels in a few weeks.

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Why We Are Autism, Apples and Koolaid

Why We Are Autism, Apples and Koolaid

I know it’s an unusual name for a blog and Facebook page, but it fits us. I’ve been asked a few times in the last month why this is what I chose to call our blog. Since I’m not feeling the best today (just a head cold – yuck!) and my head feels foggy, I thought I would just share our first post with you. We have gotten so many new followers that may not have gone back and read older posts and it’s a really funny story… now, anyway. The day it happened, I was not a happy person.

Enjoy! Laugh – if nothing else, this a good reminder that even terrible days can be funny later. 🙂

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Welcome to the first post on Autism, Apples and Kool Aid.   I’m the mom of three amazing kids – and a wonderful son-in-law!   My oldest daughter, Casey, and my son, Rob, both have moderate autism.  Our autism journey started almost 28 years ago and what a wild ride it’s been!

I’m not here to tell you that autism is easy – but it isn’t the terrible disaster that so many seem to think it is, either.  My hope for this blog is to share my circus in the hope that families who are on this journey with us will share our laughs and our tears – but ultimately realize all of our kids are our most precious gifts.

The name for this blog came from one day that is stuck in my memory.  A day which has proved that, sometimes, autism sucks, but sometimes, it’s our reaction that causes more problems.

Rob was 8 or so at the time and we had just finished remodeling our dining room.  I was in another room when I heard thump, rumble, rumble, crash, splash and Rob’s giggles.  What the heck?  As I ran towards the sounds, I heard it again – thump, rumble, rumble, crash, splash and giggles.  I found Rob in my beautiful dining room with an apple in his hand and red Kool Aid running down my walls.

It took a second to see the plastic cups of Kool Aid lined up on the table and for the dots to connect.  “Don’t throw that….” I shouted as he launched the apple across the table.  It connected squarely with the next cup in line.  The cup flew in the air, the Kool Aid went everywhere and Rob doubled over giggling.  I just stood there and looked.

When he picked up another apple, I sprang into action and grabbed the apple from him.  He laughed, hugged my legs and took off for his room.  I was left standing there watching red Kool Aid run down my walls, off my curtains, down my windows and drip from the ceiling fans.  I was furious!  What in the world possessed him to do something like this?   He had gone bowling a few days before and I guess he decided to make his own at home.

It took me forever to get the room cleaned up.  All the while, I’m mumbling not so nice words under my breath.  Steam was probably coming out of my ears by the time I got done.  I mumbled about autism… about red Kool Aid…  about sticky floors…  about not being able to handle this anymore.  I’ll admit, my anger took over.  Now, this is funny.  At the time, I was ready to explode.

Finally, the room was clean.  I was sweating like crazy and still mad about the mess…. and I flipped the ceiling fan on.  You guessed it – in my anger, I had forgotten to clean those blades…. and little spots of Kool Aid flew all over the room again.  My temper exploded and I began to clean again.

But – after the anger passed, I realized that day taught me a valuable lesson about living with autism.  Often, our reactions to what happens make problems worse.  Had I stayed calm, I would have thought to clean the blades (I hope!).  I wouldn’t have been so hot to flip the fan on.  Had I just cleaned the room and laughed with Rob, I would have only had to do it once.

I’m not always successful, but I try – really hard – to make sure my reactions to my children’s behaviors don’t cause more problems for all of us.  Sometimes, my reaction is simply to walk away until we are all calm.  Walking away isn’t always bad.

So, welcome to my circus.  Come back to soon and let’s learn together how to live, laugh and love with autism!

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Autism and Two Very Different Doctor Visits

Autism and Two Very Different Doctor Visits

We waited several months for our appointment with a specialist for Casey. Somehow, in the days before the internet, my mom found a pediatric neurologist who specialized in autism. In 1992, there weren’t many doctors who had even heard of Autism. Before we went to this appointment, we strongly suspected autism, thanks to a TV show Mom saw and a book that show recommended.

It was a two hour drive. Casey always has been easy to travel with so the drive was no big deal. The waiting room was full of toys and she happily ran off to explore while I filled out paperwork. Then… The nurse called her name and all hell broke loose.

She refused to leave the toys. She kicked. She screamed. She tried to beat her head on the floor. I was due to have Rob in just a few weeks and couldn’t easily get a hold on her. The nurse told Casey she could take a toy with her and she calmed down enough to choose one. I was so embarassed (now, 28 years later, it wouldn’t faze me. 🙂 ).

Casey refused to get weighed. She wouldn’t stand for her height. She turned away for a temp check. The nurse could have been a picture on the wall for all the attention Casey paid her. She was focused on the toy and that was that. Nothing else mattered.

When the doctor came in, she never looked up. He said her name. She ignored him. He got down on the floor with her. She turned her back. He reached around her to play with the toy. She moved to a corner with the toy. He asked her what color something was – anything to engage with her. Nope. Nothing. She knew he was there, but he had nothing she wanted so she didn’t care.

He asked me several questions and with each one, I knew for sure she had autism. When he asked what I thought was going on, I simply said, “Autism.” And he agreed. In all honesty, I didn’t think much about it. She wasn’t sick. She wasn’t in pain. She was still my sweet little girl. I had no clue what our lives would become within the next year.

The meltdowns started in earnest. Almost every day. Nothing I could do would calm her down. Plus I had baby Robbie and toddler Mandy. Life was exhausting. I rarely thought farther in the future than the next day. She was in preschool all day with speech and OT. At that point, she had a few meltdowns at school – most were at home. (I think she held it together as long as she could and then just had to let go).

She had a few scripted sentences she used when she wanted something. Few words, except Mandy, Robbie, cookie, potty and drink, were spontaneous. She sang entire songs – always with perfect pitch… Knew her ABC’s, could count beyond 100, knew more colors than I did. But she couldn’t say Mommy when she looked at me.

Rob was 7 before he saw the neurologist officially. He went to one of Casey’s appointments. He said hi to the doctor. He said mommy when the doctor pointed to me. He sat quietly and shared his toy with the doctor. He looked out the window. But, he couldn’t answer simple questions. He had major sensory issues. He rarely talked. He liked his routine. He was completely opposite of her. He got the same diagnosis.

Fast forward to last week. I took them for their annual check up with their neurologist. Casey jumped on the scale, insisted the nurse check her height and held her arm out for BP check. While Rob wasn’t as excited as she was for all of that, he did everything they asked.

When the doctor came in, they both looked at him and said hi. They were both able to answer several of his questions on their own. Casey told him what crafts she liked to do and that we wouldn’t have a fair this year. Rob told him he went swimming and Bob is his friend. The doctor was so impressed with how well they are doing – especially with so many things changed this year! He said many of his patients were having a rough time, but I told him they have just accepted the changes. (Not always happily, but who has??? 🙂 )

I thought of all of this driving home the other day. We can even stop for lunch and go shopping after their appointment. Even a few years ago, that wouldn’t have been easy to do without someone else with us. Casey did give me a scare in one store, but no meltdowns, no anxiety yelling. Just shopping for coloring books and blocks. Like a typical family.

I know some of you might be going through a terrible time right now. You may be living with things I never had to. But, please, never stop hoping and never stop believing your child will grow and change. People that knew Casey when she was in elementary school are shocked to see her now. Keep pushing. Keep believing. Keep your faith!