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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Our Adventures in Autism – A Look Back

Last week, I was invited to give a presentation at our local library about our book, the local support group that I helped and just autism in general. I tried for days to write a presentation – one that said everything I wanted to say. I finally gave up. I made a few notes and just started talking.

Some days, autism is just hard. For us, now, it’s either gotten easier or I’m just so used to it that most days just don’t seem rough. Unless I’m tired – then all bets are off. Most of the time, I think I’ve just gotten so used to the noise, the routine and the sensory issues that I don’t think about life any other way. It’s just us. I love our adventures.

I shared how Casey was diagnosed in 1992 and no one knew anything about autism except what they saw in the movie Rainman. (And no, neither of them have counted spilled toothpicks!) We learned and we adapted. Not always smoothly and not often without a lot of tears, but we made it. I shared that Rob was diagnosed much later than Casey for a wide variety of reasons. When he didn’t talk much, we had Casey’s neurologist examine him, but he agreed he didn’t see autism, yet.

I remembered how I learned to never say anything I don’t mean. The first time I remember Casey taking my words literally, she wanted something and Rob was crying for his bottle and Mandy needed help. I told Casey to hold her pants on. When I turned around a few minutes later, she had her fingers through her belt loops waiting. She was also looking at me like I was crazy. (A look I’ve seen often over the years!)

I remembered the day we were putting a new roof on the house and all I needed to do was keep an eye on Rob. He was playing on the porch, I dashed in the house to stir the soup in the crock pots and he was gone when I came back out. I ran around the back of the house to see his legs hanging over the edge of the roof. Not thinking, I yelled, “Get DOWN!” And he did.

He launched off of the roof, landed in a pile of shingles and rusty nails, did a perfect somersault and took off across the yard without a mark on him. We spent the rest of the day in the house.

During all of this, people had often told me I needed to write a book – someday. Not long after Rob jumped off the roof came the day that gave me the title to our blog and book.

I heard noises coming from the newly painted dining room that I didn’t recognize. When I went to check, I found red Kool-Aid running down my white walls. Off the ceiling fan. Dripping from curtains and tables and pictures on the wall. And then I saw the plastic cups of Kool-Aid lined up on the table and Rob with an apple in his hand.

I yelled, “Don’t throw that….” but I was too late. The apple hit a cup and Kool-Aid flew everywhere. Thankfully, I was quick enough to stop the next apple. Rob smiled, gave me a hug and ran off to play while I watched sticky juice drip. I was beyond furious as I cleaned up the mess. I was mumbling words that would scare a sailor. Finally, I was done – and flipped on the ceiling fan to cool off.

Only to realize I hadn’t cleaned it, yet, and Kool-Aid flew all over the room again. I’ll let you imagine how I reacted to that. But, I was done. I was full of rage and I hated autism. How was I supposed to deal with stuff like that for the rest of my life? Not happening. Nope. Forget it.

Later, after a shower, a nap and an ice cold coke, I could think rationally about it. I realized that I had the title of my future book (It only took 20 years to finally write it!) and our blog. That day truly was a perfect example of our life – never knowing what was going to happen.

Today, the unexpected still happens. Casey still has days where she is upset, but they are few and far between and she’s able to calm down. Rob’s anxiety is mostly under control and they both sleep most nights. (Thank you, God!) We still have sensory and communication issues and always will, but we try new things and stick with what works.

We are able to go anywhere we want now – sometimes with a lot of prep work. Sometimes, we just go and see what happens. It’s been almost 33 years since autism came into our lives (officially – now, I can see it in Casey as a baby) and we’ve learned a lot. We’ve had terrible days and amazing days. We have made so many wonderful friends who we now consider family.

When I look back, I see our rough days, but I see the happier times even better. I have so much to be thankful for and am so proud of Casey, Mandy and Rob. We beat so many odds! We have a huge “village” on this autism adventure with us – I can’t wait to see what life brings next.

If you want to read more about our autism adventures, check out our book, Autism, Apples and Kool-Aid, available here. Our new book, I Wuved Her First, is dedicated to siblings and will be available in July. Mandy and I can’t wait to share it with you!

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Autism and an Act of Kindness

For a long time, we wanted more awareness of autism. For way too many years, people just didn’t know it even existed. Now, most people know about autism. Now, we need people to remember they don’t need to be experts about autism. We just need you to be kind and try to include our families in your lives.

It isn’t that hard. It doesn’t have to be a big project. A few minutes of your time could make someone’s day. It could be something so simple that you don’t even know what you did that was so amazing.

Here’s a great example.

On Fridays, Rob loves to go to a local park and watch people play Frisbee. He laughs when they fall as they try to catch it and he loves watching the Frisbee sail through the air. The other day, his buddy, Bob, bought a Frisbee to see if Rob would play.

They watched the players for a while, then went to the soccer fields to try it themselves. And the most amazing thing happened! A young man was jogging around the soccer fields, saw Rob and stopped to play with him. It’s hard to see Rob’s face in the picture, but he has the biggest grin on his face.

They didn’t play long, but Rob interacted with someone he didn’t know and tried a new thing! Bob said the young man tossed it so easily to Rob and that even if Rob didn’t catch it, he picked it up and threw it back to the other guy!

For those that know Rob, this is huge. He doesn’t interact with people he doesn’t know. He doesn’t usually like to try new things (especially ones he feels he might “fail” at). He likes his routines and his safe places.

When Bob sent me the picture of Rob playing, I got tears in my eyes. He looks so happy and he was playing! I doubt the young man who stopped for a few minutes has any idea of the affect he had on me, Bob and our family. It didn’t take long for him to make an entire family so happy.

That’s what I want you to remember. It doesn’t take long to be kind to someone. You never know what a person is dealing with. It might not be autism, but maybe a health concern. Or money. Or a million other things. Just be kind. Include our families in your lives. We may not be able to join in as much as we would like all the time, but the invitation means so much to us.

To feel like a “normal” family, just for a few minutes. To know people see us and accept that autism, with all of its unpredictability and noise, is welcome with you. It’s an amazing feeling. And when it happens, this is what we share with all of the other families around us. It gives all of us hope when one of us is included.

Everyone needs hope. I’ve shared from the very beginning of this blog and in my book, Autism, Apples and Kool Aid, that hope kept me going in some very dark times. Hope, even just a tiny spark, can help families keep reaching for the dreams they have for their child. Everyone can help keep hope alive.

A smile. A quick “hi” to our non-verbal person. An invitation to a picnic. An offer to hold the door for others. Toss a Frisbee with a young man. Nothing is too small to bring hope.

Autism families have a hard enough time trying to do what most people consider simple things. We need to be seen. Everyone has awareness of autism, now. Lets move on to support and inclusion (let the person with autism choose how included they want to be).

Please be like the young man jogging at the park. Throw a Frisbee and make someone’s day!

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Picky Eating and Autism

I just saw a meme of a skeleton sitting at a table with a plate in front of it. The words said something like “sure, he’ll eat when he’s hungry.” If you have a child who is a picky eater, you’ve heard it all.

He will eat when he’s hungry.

I would never let my child only eat chicken nuggets.

She won’t know there are onions in the casserole.

He won’t really gag if he eats pudding.

She is just messing with you. Make her sit till she eats.

Or the popular – take a bite!

I’ve heard them all, too. Casey likes almost everything, but what she doesn’t like will make her gag if she tries a bite. I’ve seen her.

Rob is pickier, but his has as much to do with texture as anything else. He can’t stand touching gooey things and foods such as pudding will make him gag.

He knows it so he doesn’t touch foods that will make him sick. I’m lucky that, even though he is picky, he eats a wide variety of foods.

He loves most meats, but only ham lunch meat. He eats fruits and vegetables. He is choosy about snacks and doesn’t like most candy.

It’s hard for some people to understand that sensory issues really affect what people with autism can eat. It’s not just the taste – it’s smell and texture, too. For some people, color plays a huge part, too.

And it’s really hard for people who show their love by cooking delicious meals only to have someone refuse to eat it. Trust me – your person with autism will know if you sneak a veggie into a casserole. (And many won’t touch casseroles because everything is all mixed up and might not be “safe” enough to eat).

Until I learned about autism, I thought like that. Sooner or later, the kid will eat. Autism was a hard and fast lesson in what is “safe” to eat. Chicken nuggets. Fries. Crackers. Cheese pizza. Mac and cheese.

I know how frustrating it is to want your child to try new things, but is it really that big of a deal? Is this a battle you want to have every single night forever? Why does it matter if your person with autism eats chicken nuggets while everyone else eats the fancier meal? It’s just not a battle worth fighting to me.

Rob wasn’t as picky when he was little. He used to love pizza and spaghetti and chili, but won’t touch any of it now. I’m really not sure why – it’s like a switched got flipped and he won’t touch any of it. It’s really not a big deal to me. He eats plenty of different things and I stock up on what he “needs” to have. It’s no different than buying my favorite foods. 🙂

I urge you to not take it personally if your person with autism won’t eat what you make. It’s nothing to do with you – it’s what their body is telling them. Maybe someday they will be more willing to try new foods. Rob started a few years ago and has made huge steps in what he’ll taste. Gooey foods are a definite no, but he’s willing to stick his tongue in some of those. Baby steps! And I’m good with that!

If you want to learn more about sensory issues, check out our book, Autism, Apples & Kool-Aid, available here.

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Trying to Find Medical Help for a Person with Autism

Unless you have a family member with autism or another special need, you have no idea how hard it is to find a doctor or a dentist to help you. We were so blessed that we had an amazing family doctor since Casey was born. The kids loved him and he was so awesome with them. Their neurologist is a great guy, too.

But, our family doctor retired a few months ago. We have met our new doctor and Rob seems okay with him, but … it’s different and it’s scary. Casey hasn’t met him, yet. He didn’t really attempt much conversation with Rob. I know it’s hard, but beyond saying hi to him, he didn’t try to engage him at all. But, since Rob reads people so well and was cooperative with him, we’ll stick with him.

Dentists are another story. When Rob broke a tooth and was in pain and fighting infection with it, it took almost six months to get it fixed. I was so relieved when we finally find a dental clinic that would see him, take his insurance and didn’t have a year waiting list. He seemed to like everyone there, too.

So, last October, at his regular dental visit, a cavity was found and another place of concern. I didn’t think too much about it, as I knew the clinic was amazing with him. Until I called them and discovered they no longer did sedation in the office and there was at least a ten month waiting list for an appointment for an operating room. He gags easily, so he needs to be sedated for all dental work.

That day, I started making calls. I called his insurance company to help. They sent me a list of dentist in Ohio, but that was it. I called more than 50 places, trying to find help for him. I knew there was a dentist in our town that did sedation, but they don’t take Rob’s insurance and when I asked another clinic if I could self-pay, I was told that was insurance fraud. (I still don’t know why!)

I called the local dentist and the girl who answered the phone was just so sweet. She answered all of my questions and said they would be happy to see him and let me self-pay! They do sedation in the office, but he won’t be completely asleep, just very relaxed. We had to do several appointments to make a plan, but he has an appointment this Friday to get his tooth fixed and to have the other spots looked at closer.

I’ll be honest. I’m worried. I’m scared. I don’t know how he will do. Most of me thinks he will be fine. He lets blood be drawn with no issue, so I don’t think he’ll mind the IV. (The dentist even checked his arms last week to find the best place and Rob didn’t care at all about that.) But….

What if this sedation isn’t enough? What if he isn’t relaxed? What if they can’t fix his tooth? I truly do not know what we’ll do. I’ve already called so many places and no one was willing to help. Mandy keeps reminding me that both Rob and Casey have grown and changed so much over the last few years and I know that.

But, I’m still anxious. Rob knows he needs to get the tooth fixed, but he doesn’t know when, yet. He won’t be anxious about the dentist, but he will not be pleased that he might miss time with his buddy, Bob, that afternoon. So I’m saving both of us from a week of him worrying. I’ll tell him Friday morning and Bob is already planning to get him that afternoon, assuming he feels up to it. I’m sure he will – if only I was as sure about the tooth being fixed.

Autism adds so much anxiety to what should be a simple fix. I shouldn’t have to call 50 dentists to find someone to help him. And when I did find someone, I was told they weren’t even making appointments until 2026 because they were so booked up. Broken teeth can’t wait that long. Other specialists are just as hard and so many doctors don’t have any experience with autism. It’s sad, stressful part of autism that isn’t talked about much, except by families desperately trying to find help.

If you happen to know any high school student looking for a possible career, point them to dentistry for special needs. They will never lack for patients, that’s for sure!

Our new book, “I Wuved her First” is coming this summer, but if you would like to read more about our adventures in autism, check out my first book, Autism, Apples & Kool-Aid, available here.

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My Child has Autism – What do I need to do?

First, please remember that your child is still the same person they were yesterday, before the diagnosis. They still love you. They still have their favorite foods. They still like the same shows. Nothing has really changed except your perception of your child. Autism is only a small part of them, like the color of their hair. Autism is not the total package.

Now for the practical stuff. Buy a binder or a file folder and start keeping all of the paperwork you get from doctors, therapists and schools. If you child is little, you never know what you will need when they are older. Keep it all now. You can always shred stuff later that you don’t need. I recommend shredding or destroying all paperwork. People with disabilities have a high rate of identity theft and that’s not a headache you need.

As your child gets older, you’ll be surprised how many times you will be asked for the original diagnosis letter. When Casey was diagnosed, the doctor made notes in his file (on paper) and that was it. I had to call and get a copy of those notes when we needed it. These days, with everything on computer, it’s much easier and you usually leave the office with paperwork.

Keeping all of the papers is so important, but I really think the most important thing you can do for yourself and your child is to find other families who are living with autism. My best friend has been with me since we were five years old and has been through everything with me. She loves me and the kids and would do anything for us. She has heard my anger, my frustration, my exhaustion. She has held me while I cried.

But, as much as all of that means to me, she doesn’t live with autism. She understands, but it’s different talking to another autism parent. They “get it” in a way that no one else can.

So, find your tribe. Find another autism parent or group of parents. You will need them. Ask your child’s school if they can connect you. Ask your doctor if there any resources, like support groups, around. If nothing else, find a Facebook page and just read what other parent’s are doing. It helps you to not feel alone.

Follow our Facebook page. Send me a message. Sometimes, it takes me a few hours to get back to people, but I will. Just chatting can help you. I have several pages I follow and each one offers me something different. Whether it’s a mom who can be sarcastic like me, a mom of a non-verbal teenager, a mom with a son who is in a college program, a mom who shares memes and makes me laugh or a young man with autism who offers suggestions that might help Casey and Rob. I follow them and listen and learn.

Social media connections may not be the perfect support, but they are better than being alone and scared. Reach out. Let us be your group until you find one in person. Autism is hard. I’ve been living with it for almost 37 years and I still have days that I just want to cry because I’m tired and frustrated. Reach out. Don’t be alone.

If you want to read more about all of our years with autism, you will want to grab our book, Autism, Apples and Kool – Aid, available here. And our new book, about siblings, will be coming this summer! I’m so excited to write this with Mandy!

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Autism and the Endless “Why” Questions

What do you see in the picture with this post? It’s a simple snowflake Scentsy warmer, right?

Nope. It’s a picture that symbolizes the hundreds of questions autism brings into my life every single day.

I actually thought something was wrong with this warmer. I just got it a few months ago and hadn’t used it, yet, but there has been a warmer in the bathroom for years. I change the warmer for different holidays or seasons and you never know what scent I’ll be using (but, since I really don’t like anything too strong, the scents are usually baking scents, like sugar cookies).

I put this out after Thanksgiving and noticed that it would be off sometimes. As far as I could tell, it happened when no one was around, so I couldn’t figure out what was going on. Finally, I walked out of the bathroom, Rob walked in, and when I checked right after he went back in his room, the warmer was off.

I started watching and it was him. Rob turns this off every time he sees it on. He can’t tell me why – he just grins and walks away.

But – why?

Why doesn’t he like this one? None of the other ever bothered him. It can’t be the scent because I change it every week or so and it’s never strong. (Though I do know he and Casey both have a different sense of smell than I do!) But it’s also the same scents that I’ve used in all of the other warmers.

Again – why? Why turn this off every time? Why not the others? (And yes, one of them is white like this, so it can’t be that it’s brighter).

Which brings up… why will he only eat a certain brand/shape of pretzel at home, but he’s okay if I pack different pretzels in his lunch? Why can he eat different brands and shapes at Mandy’s and my parents? Why does he only want frozen waffles here but every where else, he wants them in the toaster with butter and syrup?

Why does his cup need to be in a very specific spot by the kitchen sink (kind of in the middle of the counter) when he’s done drinking during the day, but first thing in the morning and after his shower, it has to be somewhere else?

Why does Casey still insist on tapping things as she’s getting ready to go somewhere? Why can’t she bring her coat downstairs to put it on? Why does the thought of eating leftovers make her gag?

Why does she need to walk in front in some stores, while he has to walk in front in others? Why does it matter and who decided the routine? Why won’t he watch the TV in his room, but will watch DVD’s on the one in the living room? Why will she watch home movies in the living room, but not her room? (She does watch other DVDs in there, but not the home movies).

Every day, autism throws more questions at me. I know I will likely never know the reasons for most of what they choose to do. I know a lot of it is sensory based and a lot is just routine, but some of it just seems so odd to me. I would just love to know why. Not that it really matters. They will still be the amazing adults with autism that they have been for years.

I’m just curious. And if I knew why, maybe I could prevent their anxiety and stress, if I knew what not to do. (Trust me – I do know lots of “never do this” stuff, but the little things really make me think.) I want to know why he doesn’t like that warmer at all. Honestly, it’s kind of freaking me out a little, so I’m packing it away as soon as I finish writing this. I have no idea what he senses about it, but he doesn’t want it on and that’s good enough for me.

One thing I do know after living with autism for almost 37 years… The “why” questions will never stop, so I might as well laugh about them!

If you want to learn more about their sensory issues or our adventures with autism, you will enjoy our book, Autism, Apples and Kool-Aid, available here. Our new book about siblings and autism will be available in July.

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I Loved her First – The Story of Siblings and Autism

Yes! I’m so excited to announce that there will be another Autism, Apples and Kool-Aid book coming this summer. We are still working on the title, but “I Loved her First” is a possibility. Mandy and I will be co-writing this book to share her thoughts and adventures having two siblings with autism and how that has affected her life. I’m sure you will want to read her stories.

The possible title comes from Rob. He often uses song titles or lines from movies to help him share what he is thinking. (Don’t ask how many copies of the original Willy Wonka and Wizard of Oz we went through on VHS!) A few months ago, Rob was looking at pictures on the refrigerator and took down one of Mandy and Cory. He touched it carefully and said, “I loved her first.” This is a song by Heartland.

While the song is about a dad watching his daughter at her wedding, it completely describes Rob’s feelings for Mandy. Rob and Casey are typical siblings – they look after each other, they tease each other, they ignore each other. They love each other. Rob keeps an eye on Casey when we go anywhere. He protects them both.

But, Rob absolutely adores Mandy. Even as toddlers, they were a matching set. What he didn’t think to do, she did, and he followed right along. We just watched a home movie last night. Rob is a baby, maybe 8-9 months old, and Mandy is 2 1/2 or so. Even that young, he watched every move she made and smiled/laughed at her. She is the reason he crawled and walked early, determined to be where she was all the time.

If she wanted to play dress-up, he wore dresses (along with his Mickey Mouse ball cap). If she wanted to play Barbies, he brought cars to the Barbie house and played. If she wanted to jump on the trampoline, right there he was. Mud pies? Let’s do it.

But, for all of his adoration, she annoyed him at times and he never let her forget it. I can’t count the number of times I looked outside to see him sitting on the ground by a tree, with her in the tree. She made him mad and he was waiting for her. A light smack when she finally came down and life went on as always.

Casey loved holding Mandy as a baby. When Mandy got bigger, Casey laughed at her and liked to play beside her to show her toys. But, Casey never idolized Mandy like Rob does. Casey trusts Mandy – she knows Mandy will always make life fun. She always knows exactly what buttons to push to annoy her sister. Typical siblings.

Mandy says she doesn’t remember her childhood like I do. I remember regrets of not spending enough time with Mandy. I remember telling her we couldn’t do things because Casey or Rob wouldn’t like it. Mandy remembers fun. I’m so grateful for that.

But, even with the fun, Mandy is the first to admit autism wasn’t always easy or fun. In our new book, she’ll share some of the not-so-fun times. It is our hope that other siblings will realize they are not alone and that their feelings are perfectly normal. Typical siblings feel anger and resentment, too. We all do, but siblings of autism are often told they shouldn’t feel that way because their brother or sister has autism.

Not true. Feelings are justified and we want more siblings to know that.

Every time I share a post about autism and siblings, it is shared often and gets lots of comments and questions. Mandy and I decided to really dig into their relationship and offer some ideas to help other siblings and families with the delicate dance of autism. I did talk about siblings in my first book – Autism, Apples & Kool – aid – available here. The new book will be just about autism and siblings. I’m sure you will enjoy it – and hopefully, learn a few things, too.

Look for it in July!

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Autism Beauty

I was scrolling through Facebook a few days ago when a new post popped up by a local photographer, Dobbins Aerial Photography, who uses a drone to share new view points of things we see so often. I always enjoy his pictures and when I saw they were snow ones, I had to look. As soon as I saw this picture, it made me think of autism. Kyle graciously allowed me to use it with this blog. (If you haven’t seen his work, you definitely need to take a look!)

The picture looks so peaceful. So beautiful. It’s a piece of art created by God. Just like our kids. Are they always peaceful? Of course not, but… it still makes me think about autism when I look at it.

The railroad track is so perfectly straight. It doesn’t change course quickly – it’s always in the same place. Just like autism. I don’t know about your families, but in ours, change is not appreciated at all. As long as I keep things the way they have always been, Casey and Rob are happier.

Luckily, in the last several years, I have been able to make small changes here and there, with lots of warnings and prompts about what is going to happen. Big, unexpected changes are not liked. While Casey used to have meltdowns about these changes (snow days were miserable for all of us – she usually screamed/cried from the time she usually left until the time she should come home, then get right into her usual after school routine), she is more accepting of them now.

I give them both as much notice as I can and hope for the best. It is getting easier and I’m so thankful for that!

I look at this picture and I see silence. Like the silence so many of us hear with our kids. They may make lots of noise, but the real conversation is so rare. Sometimes, I crave that. I would love to be able to ask them something simple, like what their favorite color is, and get an answer. Casey will always answer questions, but most of the time, she answers only so you will leave her alone. She doesn’t always listen to the question.

But, again, she’s getting better at listening. And sometimes, to be sure I have her attention, I will ask her a silly question, like is she a snowman or is she purple, to get her to really listen. But, even when she’s really listening, she may not give me the right answer. I don’t think either of them see the point in casual conversation. You say what you need or want and move on to the next thing.

I see beauty in the picture. The snow, obviously, but also just softness. It’s like autism when the person is sleeping (rare, I know!). How the stress of trying to fit into a world that isn’t ready for them leaves for a few hours. How peaceful Casey and Rob both look when they are sleeping – and how much I wish for that peacefulness every day for them.

The snow hides so many things in this picture, just like autism “hides” some pieces of our kids. How many talents are hidden away because the person can’t share what they are thinking? How many dreams are never reached for because autism prevents the person from telling us what they want to do?

How many fears do we never know about? How many times do we miss emotions because the autism hides them from us? It’s sad to think about. I know I’m always trying to uncover more of Casey and Rob and sometimes, I succeed. Other times, they aren’t interested and I respect that, too. As much as I know them, there is so much more I wish I knew. Maybe someday, I will! There’s always hope!

And when I look at this picture, I see the unbroken snow, waiting for someone to walk through and leave tracks. That’s how I feel about autism sometimes. Like I’m the first one to walk this path and I’m guessing at every step what’s best for them. I wish there was a path to follow – someone else to make decisions, at times. If I’m the one breaking the path, I’ll make mistakes. It’s just exhausting, sometimes, to feel every decision and wonder what is best.

For right now, I’m going to focus on the beauty and peacefulness of the picture. Casey is sitting near me, listening to music and giggling. Rob is happily building Christmas trees with his Legos. It’s starting to snow outside. Autism isn’t always easy, but it does have a certain beauty, at times, if you only look for it.

If you enjoyed this, please check out our book, Autism, Apples and Kool-Aid, on Amazon. I think it will make you laugh and remind you to never give up.

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Another Surprise with Autism

It’s funny. You would think after 36 years of living with autism, I would be used to the odd little things that make me want to cry. Or, if not cry, that just hits me in the gut. This morning was one of those.

I have been Casey and Rob’s guardian since each of them were 18. I know them. I know they can’t take care of themselves completely or make decisions that are safe. I know this.

This morning, Mandy and I went to court to have her named co-guardian of them. I’m doing my best to make things as easy for her as possible if something should happen to me and having her already their guardian made us both feel better. Since I’ve been their guardian, it wasn’t going to be a big deal.

We had the kindest judge and he made both of us feel comfortable. It was basically just us listening to him talk about their need of a guardian, how I have already been and all of the paperwork we submitted with our petition.

But, as he talked, it hit me again just how much Casey and Rob need me. Need us. Need someone – constantly. Like a kick in the gut. I know I took a deep breath and tried not to show any emotion, but it was hard. They need help. They must have a guardian. I’ve been that for 18 years.

Hearing those words again hurt, though.

It doesn’t really make sense, I know. It’s not like it was something I didn’t already know. Mandy thought maybe it was grief of the life I might have had without autism, but I don’t think so. Sometimes, it gets to me that people who don’t know how amazing they are only see the autism. The disability. Their deficits. Their needs. That’s what bothers me.

Sometimes, it is an awareness that this is my life. Sometimes, it just makes me sad that they have to struggle. Sometimes, I just don’t know why it bothers me.

Today, it did. He was a nice man, doing his job. But I wanted to tell him those papers don’t tell him anything about Casey and Rob. I wanted him to see who he was talking about. I know it’s silly – he was busy – we needed to get home – it was a court proceeding and not the right time or place.

It’s hard when you never know what little thing will kick you in the gut and remind you just how much your child/person with autism needs you. The tears come out of nowhere. Let them happen. Your tears won’t hurt anything and holding in those deep feelings will cause you more stress and anxiety. Just cry and move on.

Because it doesn’t matter what others think about your child. You know the truth. That autism doesn’t define them any more than their hair color does. Autism is just part of them. They are amazing people and I am so lucky to be blessed with so many people with autism in my life.

If you would like to read more about our lives with autism, here is the link to our book – Autism, Apples and Kool Aid. I think you will really enjoy it and I’m sure you will laugh.

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Merry Christmas from Autism, Apples and Koolaid

Merry Christmas from Casey, Rob and me!

I can’t believe that I’ve let it go so long without writing again. I have no excuses, really, beyond being tired and busy. And, sometimes, I just don’t know what to talk about that might interest anyone. The last several weeks, life has thrown some curves our way and it’s been hard to think about much beyond those curves.

It is interesting, though, how autism makes problems unique. I discovered early in November that my well had dried up and I needed to have a new well drilled. The cost was crazy, but even more worrisome was trying to get Casey and Rob to understand to be even more careful with water. Luckily, the company who was drilling our well understood my situation and brought a trailer with a water tank that I could have refilled every few days.

That was such a relief, but it was still hard to remind Rob his showers couldn’t be the long, hot ones that he and I like so much. He needed to jump in, wash, and get out. I was so proud of them both – even though they weren’t sure what it meant to be low on water, they followed along as I rushed them through baths and showers. Casey was happy that she still had a load of laundry waiting when she got home!

But there again, water and the cost of a new well and trying to get a tooth fixed for Rob (again!) and worries for family and friends just seemed to take over the last month. Some days, I felt like I was losing my mind – that if one more thing happened, I would just sink into a blob of goo all over the floor. Those minutes didn’t happen often, but it was exhausting when I did feel that stress. I know what I need to do to relieve stress and, mostly, those ideas worked. But, it also made me tired.

Casey always has a long list of Christmas “must-haves” and, early in the month, she was full-on reminding me every single day of what she still wanted to do. So for a few weeks, we were somewhere every night, either taking baths at grandma and grandpa’s house or visiting a Christmas light display or shopping. We managed to get everything she wanted, except for one, and I’m hoping to take them to those lights tonight or tomorrow. For some reason, she hasn’t mentioned it, though. Maybe she’s tired, too.

She’s happily munching on “Grinch” cookies now and reminding me that she’s going to get presents Tuesday. (When they were little, we started the tradition that the kids exchanged gifts on Christmas Eve and they will also get their gifts from me that day.) And presents Wednesday. And presents Thursday. The funny thing is, she doesn’t care about the cost of any present. She would be thrilled to open nothing but socks and color by number books.

Rob is the same way. He doesn’t care about the cost of gifts. He wants what he wants. Basically, stuff to rip up and Legos. He hasn’t mentioned presents and he won’t. He lets Casey plan everything and just follows along with whatever she says is next. He enjoys going to the light shows, but he’s not worried about getting to all of them. (That could be because he knows she’ll worry enough for both of them!)

We are ready to relax and have some fun. Our Christmas may not look at all like yours, but it works for us. Casey and Rob are excited and happy with our plans and that’s all that matters to me.

May each of you have a very blessed Christmas! We are so happy you are enjoying our adventures!

If you would like to read more adventures, check out our book, Autism, Apples & Kool Aid. I think it will make you laugh and remind you of what is really important in our crazy lives with autism.