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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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.

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Autism – All in Good Time

Autism - All in Good Time

When you look at the picture of the birdhouse with this post, I’m sure you probably don’t think much about it. Maybe that someone likes pink and purple. But to me, it’s a reminder. A reminder that with autism, as most things in life, it’s all in good time. It’s a waiting game. And for someone who isn’t always that patient, I need that reminder.

Rob painted this birdhouse at his day program last week. Why do I think it’s reminder?

Because – I’ve had those birdhouses for him to paint for a few years and he always said “yes, please, no fanks” when I asked if he wanted to paint them. So, last week, I was cleaning out craft supplies and took a bunch of stuff to the day program for them to use. And he painted it a day or two later.

I couldn’t believe it when he brought it home. I asked him why he wouldn’t paint it with me, but he looked at me like I was crazy. I have a huge tub of paints. I offer him things to paint often as he does enjoy it. And he always said no.

Mandy laughed at me when I commented that I just wanted to know “Why?” Like we can ever know why. And it really doesn’t matter. He said it was fun to paint (and it matches the pumpkin he painted) and that’s all that really matters.

Yesterday, I saw the birdhouse again and it hit me that it is a good reminder to let things happen when they need to. Maybe Rob just felt like painting it the other day because they were painting pumpkins. Maybe he likes their shade of purple better than mine. Maybe he likes their paint brushes. Maybe the moon was in the right cycle and the timing was right. Who knows?

Autism is so much that way. We want to see progress. We want to see that our kids are learning and taking steps forward. And we want to see it NOW! No one wants to wait to see what their child learns next week. We want to know this minute. Autism doesn’t work that way.

For our families, so many things need to be lined up perfectly to see those small steps forward. Sensory issues can’t be causing stress. Anxiety needs to be controlled. The right teacher, the right way to explain things, a child ready to learn. This isn’t just with autism, either. Every child, every person, needs to do things in their own time to their own ability. It’s a lesson we all need to remember. Life is already too fast. Slow down.

Progress will come. Not as quickly as we want, but it will happen. You need to have patience and keep your faith. Keep reaching for the stars. Keep hoping and dreaming.

As for me, I’ll be looking at a little pink and purple birdhouse and reminding myself to slow down and enjoy the little things. Everything will happen in it’s own good time.

If you would like to read more about our adventures in autism, please check out our book – Autism, Apples and Kool-Aid on Amazon.

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Sometimes, You Just Hurt

As many years as autism has been in my life, you would think I would be used to tough questions. To reports that show that how much Casey and Rob are affected by their autism. And mostly, I am.

When I got the mail this morning, these letters arrived. Statements of Expert Evaluations. One for each. And I felt a kick in the gut.

It’s silly. I knew the forms were coming. We are having Mandy named as co-guardian for Casey and Rob and had to have these forms filled out for the probate court. I’ve been their guardian since each turned 18, so the court is aware of them, but it had to be done. No big deal.

Except, today, for some reason, I cried about it. I live with them. I am well aware of what they can and can’t do. But seeing it on paper is hard. I can even laugh at myself now, but an hour ago, those papers were heartbreaking.

So here’s my advice. Cry if you want to. It won’t change anything, but it’ll help you feel better. The tough questions and decisions will never end as long as autism is part of your life.

Cry if you need to.

It won’t change your love and devotion to your child. It just shows again how much you love them and how you wish the world knew just how amazing they are.

Cry and move on. Remember, those forms don’t change anything.

I will always have the most amazing, most awesome kids. Autism and tough forms to fill out will never change that.

If you want to read more about our adventures with autism, please check out our book – Autism, Apples & Kool-Aid.

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Slow Down and Really Look

I needed this reminder. The last several weeks have been so crazy busy that I feel like I’m just going from one thing to another without really paying attention to what’s going on around me. Don’t get me wrong – we are having lots of fun together and have lots of adventures planned, but something happened yesterday to remind me to really look around.

Our autism support group is donating a Christmas tree to be auctioned off to benefit the Firefighter’s Toy Chest in our community. Yesterday, several families met so their kids could decorate an ornament however they wanted. It was a beautiful fall day and Casey and Rob were so excited to go to the playground for a while.

I, on the other hand, was not feeling great and really wanted to just stay home. I couldn’t disappoint them, though, and I knew we wouldn’t be gone long.

Rob and Casey had already decorated their ornaments, so they headed straight to the playground. He jumped on a swing, but after a little while, Casey came back. She sat on a bench and just watched the kids. She had the most beautiful, peaceful smile on her face and it was obvious she was enjoying yourself.

As we were cleaning up, another mom, Keisha, asked if Casey was always smiling. I laughed and said no – remembering the night before when Casey was not pleased that I wouldn’t write Christmas activities on her calendar, yet.

Keisha said that she and her husband had talked about Casey – that whenever they see her she has the most beautiful smile and always seems so happy. I stopped cleaning up and looked over at Casey – really looked at her – and saw how happy she was to be at the playground and outside. Her eyes were twinkling, her feet were bouncing and she was smiling bright enough to rival the sun.

It hit me then. I see her smile often, but sometimes, I am so busy trying to think ahead of them that I don’t really notice it. I don’t stop and appreciate how happy she gets over the smallest things. She doesn’t need much to make her happy – any trip, anywhere is enough to bring a smile to her face and twinkles in her eyes. Going to Grandma and Grandpa’s causes giggles all the way to their house.

Rob’s smiles are just as magical. He doesn’t show his excitement as much as she does, though. He tends to wait and make sure that wherever we are going is worth the trip. He is such a homebody. He enjoys activities, but only with people he feels safe with and preferably no crowds.

I wish we could all be more like them. To be happy with small things. I tend to be – a pretty flower or a text from a friend always makes me happy. But I know I need to slow down more and really look around. I need to notice the miracles around me every day, like her smile and his giggles.

Life with autism isn’t easy. It’s hard to slow down, sometimes, but I’m urging you to do just that. Sit on your porch and look at the fall leaves. Listen to some music and just sit. If we don’t slow down, we’ll miss the smiles that everyone else sees!

If you want to read more about our lives with autism, check out our new book! I hope it makes you laugh and gives you hope! Here’s the link Autism, Apples & Kool-Aid.

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Our Book is Available Now!

For more than 30 years, people have been telling me I need to write a book. I needed to share the funny things that Casey and Rob have said and done.

I always wanted to, but never seemed to have the time. And honestly, I wasn’t sure what to write about. Just like on this blog and on our Facebook page, some things are just private. I wasn’t sure how to even start a book.

Last winter, I finally add the urge to start and just see what happened. I was pleasantly surprised at how easy it was to write once I got started. The book is nothing like I thought it would be. I’ve heard from other authors that books go where they want and we just follow and that definitely happened here. I pictured something completely different, but I am proud of the way it turned out.

People who read it before publication told me it was good. I’m just really excited that I achieved a dream that I’ve had since I was a child. I hope that someone who reads it smiles and finds their hope again. I hope you laugh and reach for your own dreams. Our lives with autism are busy, but never forget to follow your dreams, too.

If you would like to order a copy, click here. Thank you for your continued love and support for our circus! Now that this is done, I’m hoping to post here more often. For too long, I’ve felt like I had little to say here after working on the book. 🙂

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Autism Families Don’t Need Pity

Autism Families Don’t Need Pity

I suppose that is a pretty blunt title, but it’s true.

I was at an event with Casey and Rob last week and a lady I barely knew came up to me and wanted to give me a hug and tell me how badly she felt for me. Honestly, I was confused – I had no idea what had happened that made her feel that way. So I asked why she felt sorry for me and she told me because I had Casey and Rob.

Shock. I was in total shock. Why would a near stranger ever think that was an appropriate thing to say? And if she had even a clue about our family, she would never have said that to me. So I said something like – why would you even feel that way? And her answer was again that poor me – I had to live with two people with autism. Lucky for her, she moved on to someone else before I could get over my shock and really tell her how I felt.

The really sad thing is – maybe 10 minutes later, another person walked up to me and said nearly the same thing. I looked over at Casey and Rob, saw they were having fun and asked why she felt pity for us? Because our lives must be so hard…. I’ll admit it. I got angry.

I told her everyone had hard days and our lives were no harder than anyone else’s. Sure, I’d rather not relive some moments in our past, but I’m fairly certain every parent in the world feels that way. There are many times I’ve believed my life was easier than most. When my three were teenagers, I never had to worry about where they were or if they were drinking or driving crazy. I didn’t have to pay outrageous car insurance bills.

I didn’t have to try to run three people in three different directions every single day. I didn’t fight about clothes, make-up or curfew.

Instead, we ate supper together every night. We watched movies and played on the trampoline and in the pool. We enjoy hiking together. We go shopping and out to eat. We do crafts. We danced silly dances in the living room and sat on the porch swing.

Casey and Rob are happy. They get to do things they love to do and be with people they love. They look forward to simple things in life and don’t worry about stuff that truly doesn’t matter. And people feel sorry for us??

I’m not saying that we didn’t have exhausting, miserable days. I’m saying that everyone does and days with autism are no worse than any other family. In some ways, our lives are easier.

It’s all in perspective. Sure, there were days I didn’t like autism much. But a good night of sleep usually took care of that. (Sleep is seriously the best cure for so much!!)

So, I’m asking anyone reading this to think before you speak. You may feel that your comment about feeling sorry for us is comforting, but it’s not. Yes, there are families that eat that pity up, but most of us don’t feel that way. We feel like you are only seeing the autism and not the amazing people our kids are. Instead of offering pity, offer help. Learn about our families and offer to stay with our kids so we can take a nap or run an errand. Learn how strong and close most of our families are and how we pull together to help each other.

We don’t need your pity. We need your acceptance and your help.

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Autism and the Tough Questions

Autism and the Tough Questions

Several months ago, I had to meet with a lady from our county board of DD about Casey and Rob’s waivers. She had pages of questions and I answered each the best I could, but …. I’ll admit, some of the questions hurt. I am constantly amazed by how far Casey and Rob have come since they were children and having to answer questions about their abilities wasn’t easy.

I know they need constant care. I know they need help with many things. I know they have no sense of danger. I know it isn’t safe for them to use appliances without total support. I know they can’t handle money. I see this stuff every day.

But – those questions were tough.

I know the questions were necessary to get Casey and Rob the support they need. I know that it was important. And I know I cried when it was over. It was a huge reminder of how much support they do need.

To me, they are just Casey and Rob. I know he needs help turning on the water or he’ll burn himself in the shower. I know she can’t wash her hair (we recently discovered that if Casey can’t see her hands, she can’t control them very well, such as to wash and rinse her hair.) I know when he’s anxious – I know when she’s getting overwhelmed. It’s just life to me.

When it came time to redo their ISP’s, it was even tougher. The ISP is supposed to be detailed enough that a complete stranger can read it and be able to care for Casey and Rob. I understand the idea and it’s probably a good one, but really? It would take a hundred pages of notes for me to tell anyone they schedules, their needs, their triggers, their anxieties, their likes/dislikes, their routines. But, I did the best I could and laughed to myself. There is simply no way anyone with autism can be contained to a form.

And when I do figure out their routines, they change. Just ask any parent who stocks up on their child’s favorite must-have food, only to have that child decide they no longer want it. Rob has done that to me many, many times. Luckily, he usually comes back to wanting that food.

It’s hard for any parent to see the delays their child has. It’s hard to sit and listen to everything they can’t do. It makes you question every decision you made – would they be better off today if I had done this or that?

But sometimes, the tough questions make me proud. Yes, Casey and Rob need constant supervision and support in all areas of their lives, but you know what?

They are happy. She is experiencing things and going places that even five years ago, I wouldn’t have believed. She will be singing in a talent show later this week (I cannot even imagine standing on a stage and singing to a crowd – that’s terrifying to me!) She went to a college football scrimmage over the weekend. He is venturing out of his comfort zone (With people he trusts) For the most part, their anxiety is under control. And we know how to alleviate their sensory needs.

So my advice to you is to let those tough questions remind you just how far your child has come. Yes, it hurts to hear the delays, but think back to other meetings and remember that the delays that were important then are the ones your child has overcome. Every small step forward is a reason to celebrate and be proud!

No one can tell you what skills your child will learn. No one can predict the future. Please don’t let the tough questions bring you down. Keep dreaming and reaching for the stars with your child!