Month: January 2025

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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.