Category: parenting and autism

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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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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 – 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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Autism and Awesome Surprises

Autism and Awesome Surprises

This has been an up and down week. I ended up in a boot for an injury from a few months ago, Casey had a really rough evening a few nights ago, today was supposed to be the baby shower and the time change. Despite all of that, I just had something happen that proves again that autism can always surprise you in good ways!

Rob has had a few loud days this week, but nothing that would make me want to increase his meds back to what they were. But, my little guy has shown his sense of humor, his wonderful singing voice and an even better surprise this week, too!

One day when I went to pick them up, a staff person came out with them, so I knew something had happened. It turns out Rob had taken a deck of cards and wouldn’t give them back to staff. I looked at him, said “give me the cards” and he opened his lunch box and handed them to me. I was surprised he handed them over so quickly, but didn’t really think much about it beyond maybe he was growing up a little.

Until we got home and he rushed to his room – to pout, I assumed. When I noticed he hadn’t even stopped to get his pills and snack, I peeked in his room to see him dump out another (bigger!) deck of cards! The little turkey happily gave me the smaller set and kept the larger one for himself. While I did take them away and told him he had to take them back the next morning, I had to giggle to myself that he thought things through so quickly that he kept the larger one for himself and handed over the smaller deck. That’s a lot to think through – especially when I was waiting for him to hand the cards over in the parking lot. 🙂

As we were coming home one evening, Alabama’s “Dancing, Shagging on the Boulevard” was on the radio and Casey and Rob were both dancing in the car. When we got home, I heard Rob singing “Dancing, shaking that big ole barn!” 🙂 He rarely sings when I can hear him and I wish he would do it more – he has a beautiful singing voice – just like Casey does! 🙂

But, really, the coolest thing of all just happened a little while ago. Every year, I struggle to think of what he might like for Christmas. He will only say he wants “presents” with no comments beyond that. So, I guess what might make him happy and hope for the best. Today, though – today! He wrote a letter to Santa! The first one he’s ever written! I’m so excited and happy. It took 29 years – but it did happen!

And this proves what I’ve been saying for years – you never know when something will click and your child will have a new skill! It’s hard to be patient. It’s hard to keep going over and over and over the same things every day and not be exhausted. It’s hard not to be impatient and discouraged. I get it. I struggle with that every day, too, but it’s days like today that remind me all of that hard work is worth it. Honestly, Rob didn’t see the big deal in writing his letter – he looked at me like I had lost my mind. (And yeah – he might be close to the truth there! 🙂 )

And now, something else. Casey is struggling. Today was supposed to be Raylan’s baby shower and she’s having a hard time with not being an auntie today or having the shower. She had a major meltdown a few nights ago and is close to one again. She is laying on the couch listening to Christmas music as she tries not to cry. Rob just came in and sat down close to her and said, “It’s alright, Casey. It’s okay, Casey.” I could cry – usually when she’s upset, he laughs at her and says something like “no fits, Casey!” just to make her even angrier.

So please – keep dreaming for your child. Keep fighting for what they need. Keep your faith that one day, they will gain the skills that you are working on so hard right now. You never know when your surprise will come!

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Autism and Self Care

Autism and Self – Care

Those of you who read last week’s post know what the last month or so has been like for our family. And in the middle of our grief, self-care has become even more important – and the first thing that I stop doing.

When you have a child with special needs, that child (or children!) can become the only thing you think about. Your life revolves around what you want for that child and, sometimes, even your other children suffer for that. While I don’t think I ever focused so much on Casey and Rob that Mandy suffered, I know there were times that she didn’t get the attention she deserved. I know even more that I didn’t focus on myself enough at times and I burned out. Luckily, my family stepped in to take over for a few hours and let me regroup and recharge.

The thing is, self-care looks different for everyone. For some people, being with a lot of people helps. For others, large groups are too tiring (that’s me!). You will need to find your own way to take care of yourself.

I’m struggling to make decisions and I know it’s because of my grief. I know I need to make choices soon and my head is too fuzzy to think which choice would be best for us. The gray, rainy days are definitely not helping me, either. I need to start looking for a new job, soon, but the thought of trying to make arrangements for Casey and Rob every day again is just too much for me to deal with right now. I can’t even think what I should do. So, I’m going to take a deep breath and focus just on the next hour. Write this, take a shower, make lunch.

And then I’ll figure out what to do next. I have a list of things that need done around the house, but I’m going to focus on me and what I need right now. I know it sounds selfish, but I also know it’s what is best for me – and that means for Casey and Rob, too. I can’t be the mom they need if I’m falling apart – so me, first.

Self-care for me today might be finishing a puzzle I’ve been working on. Maybe taking a nap. Or making a Christmas wreath. Maybe I’ll finally start the book that has been sitting here for weeks. Maybe I’ll put a Christmas tree up and enjoy the bright colors. Or maybe I’ll call Tracie and talk for a few hours. All of these sound good to me right now. The best thing is, I don’t have to decide right now. My motto lately has been if I don’t need a decision this second, it can wait. I don’t care about most things right now – only my family.

For you, self care can be anything that makes you feel calm and happy. Exercising is a good one (I enjoy that – it’s great for stress relief, too!). Sleep is another. Maybe it’s a hobby you haven’t made time to enjoy in a while. Maybe it’s finding someone to watch your child while you soak in a hot bath or enjoy some online shopping. You know what makes you happy. The problem is – you let everyone else be more important than you.

And that’s going to cause problems. I guarantee you will crash at some point. I don’t know how or when, but you will. It won’t be pretty – and it can be avoided if you take care of yourself now! Before it’s too late. Please, let someone else handle things for a few minutes and do something you love. It’s not just important for you – it’s desperately important for your child, too. Like I always share – you can’t be what your child needs if you burnout.

It’s a hard lesson to learn and one I still struggle with at times. It’s hard to be selfish about doing what you love when so many other things are pulling at you. But, in this case, being selfish is what you need to be. It won’t matter tomorrow if the house is dusty or the dishes still need washed. It will matter if you are crying in bed and unable to get up because you are just done.

Focus on you – just for a little while. I promise you – life will be easier if you do.

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Celebrating the Little, Big Steps in Autism

Celebrating the Little, Big Steps in Autism

It’s been a week of so many little, big steps for Casey and Rob. I say “little, big” because to most people, these steps forward are not a big deal. To an autism family, little steps sometimes take years to see – they are big, huge, amazing steps!

One of the funniest steps forward is seeing Casey use emotions Thursday evening to try and get what she wanted. When I picked them up, she was happy and giggling. A little while later, she was crying and telling me she didn’t want to go to their day hab the next day.

Nothing I asked could help me understand why she so badly didn’t want to go. I messaged staff and was told she had been happy and engaged all day – nothing had happened. Casey kept sniffling with teary eyes saying “No Hopewell tomorrow.”

I finally stopped asking her questions and hoped she would calm down enough to tell me. And she did.

She looked at my calendar, saw I had an appointment Friday and she wanted to go to Hobby Lobby, not Hopewell. 😳 I was so happy she was finally able to tell me – and use the right emotion (sad)! I told her I wasn’t going to that store and she happily went to Hopewell Friday.

Saturday was a car show that Casey had been reminding me about for weeks. She was so excited to go, but she was able to understand she needed to stay with Grandma and Grandpa before we went. She even stayed happy and calm when that visit stretched longer than I planned.

As we left their house, Rob started his “on the way home” phrase. He says it 13 times whenever we get in the car to come home. (He only does this with me – for everyone else, he stays quiet until he gets home and then starts repeating it… 13 times!) We got to the car show before he was finished and he was able to stop! This is huge! His OCD requires 13 repetitions of his phrase and he controlled it.

He quietly finished his 13 times as we walked back to the car after the show. 😊

The car show was on Main Street and we were able to walk around looking at cars without the fear that one or the other would take off. Casey even walked about half a block by herself to say hi to friends of ours! Mandy, Cory and I were all watching to see if she would go to them and stop and she did!

The look on Lyn’s face when she saw Casey by herself was priceless! I walked over to them and gave Casey a big hug and told her how proud I was. She looked at me like I was nuts, of course. 😊

And today… We went swimming. But even better than that, all three of us played ball together for a long time in the pool. And when I got out, Casey and Rob played together! I sat on the edge of the pool and thought about the years when I couldn’t take them to a public pool without a lot of help. Look at them now!

And when it was time to go, they got out of the pool without a fuss. Again… Not too many years ago, that wouldn’t have happened. I would have been telling them 20 minutes left. 15 minutes left. 10 minutes… And so on… And probably still would have had issues.

So…. Brag about everything your child does. Who cares if it’s a skill they should have mastered years before? Brag about it to everyone! The people who truly care about your child will be as excited as you… And the ones who aren’t excited… Maybe they don’t matter as much.

Because, just like everyone else, your child with autism knows when you are proud and happy and excited. They may not be able to communicate with you, but they know and hearing you brag to everyone about a new skill they have learned is just as important to them as it is to a “typical” child. Shout from the rooftops! And be sure to let me know – I’ll spread the word and we’ll all cheer for your child! 🙂

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Autism and Tough Choices

Autism and Tough Choices

You know that I’m a big supporter of letting people with autism try new things. Whatever Casey and Rob want to try, I do my best to find ways to support and encourage them. However, there are times that I have to make tough choices – and they usually break my heart. I hate mom guilt.

Yesterday was my niece, Anna’s, graduation party. It was held at a place Rob was somewhat familiar with, but there was going to be a big crowd of people he didn’t know. Plus, the weather here has been unstable, to say the least, for the last week. Plus, it was hot and humid. Casey couldn’t wait to go – she had gotten a new shirt, just for the party. I knew Rob would not enjoy himself. I knew it. While I’m all for pushing them to try things, I also don’t set them up to fail. He may have been fine, as I wouldn’t have been there long. But, my gut told me I was asking for trouble. I knew his anxiety would go sky high as soon as he saw so many strangers.

The problem was – he heard Casey talking about Anna and Uncle Jeff and Grandma Rose and Grandpa Mack. So he started asking, too. I tried to explain to him that the party wasn’t at Uncle Jeff’s house or Grandma’s house. But he kept asking. And I felt like crying. I knew he wouldn’t enjoy it – but how could I explain that to him? When I’m always telling them both they can do anything if they would just try?

Enter – Mom Guilt.

Because, the reality is…. I knew it wouldn’t go well. And I just didn’t want to have to handle it.

Not that he would have a meltdown or run away. He would just get loud… louder…. louder…. maybe scream coffee cup or one of his other phrases. I knew Anna would be fine if he did – she’s an amazing young woman. I knew my brother wouldn’t care. But – sometimes… I just don’t want to be put in that position. So, mom guilt set in. I went back and forth arguing with myself.

In the end, I told Rob it was hot and it would be crowded. He asked for Uncle Jeff. I told him he wouldn’t be able to be in the house by himself – he would have to stay outside with me. He asked for Anna. I told him he would have to put a good shirt on. He asked for Grandpa Mack.

I didn’t want him to think I just didn’t want to take him. I’m proud of him! But – I also knew it wasn’t going to be fun for him. This is the hardest part of being an autism mom – the lack of communication. Did he understand that I knew he wouldn’t enjoy it or did he think Casey was more special than he was? So I cried some more.

In the end, I pulled out the big guns. I offered him a deck of cards to rip up and a Big Mac and fries. He stayed home. He was happier there. But I was almost in tears as I pulled out of the driveway. I never want my kids to think they aren’t welcome to go anywhere with me. I wanted him to understand that I knew he wouldn’t enjoy it and that’s why I was making other arrangements for him. But still….. autism isn’t easy.

It was good to see everyone at the party, but I couldn’t really relax. Even though I knew Rob was happily ripping up cards and waiting for his McDonald’s. Casey happily filled her plate with delicious food, watched kids for a few minutes and she was ready to go. We got Rob his supper and went home.

He seemed ok – but it still nags at me. Does he really understand that I would have loved to take him if I thought any part of it would be an enjoyment to him? If it hadn’t been so hot – if the weather didn’t already have him anxious…. the list goes on. The reality is, I know I did the right thing. But it still sucks at times. Mom guilt. Don’t you love it?

And – only another autism parent really gets how hard it is sometimes. People understand it’s hard. The people closest to us understand a little more as I’ve cried on their shoulders. But – really, only another autism parent truly understands that pain of not knowing if their child truly understands you are making a tough choice that is better for them. Communication… you don’t think about it much, until you don’t have it.

So – I still stand by my advice to always let your child try – as long as there is a possibility of success. Yesterday, Rob had too many things stacked against him. He may have made it through the party without any yelling, but he wouldn’t have liked it. He would have been stressed and anxious – and we would have paid the price when we got home.

So – let them try. But follow your gut instincts. And – don’t be afraid to just say your children are staying home because you need a break. It’s allowed. And it’s important.

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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!

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Autism and Mom Guilt

Autism and Mom Guilt
Autism and Mom Guilt

Later today, we finally be celebrating my niece’s high school graduation.  The party is at her grandparent’s house.  I’m feeling so guilty because I’m not taking Rob.

He is welcome, of course, and no one would mind his noises.  But, we were there the other night and he “claimed” a spot in their living room as his safe place.  Bill and Reeva don’t care, as they love him.  But – I can’t be sure he won’t go looking for things to rip up, so I will be constantly running in to check on him.  And I just don’t want to.

Yeah, I know that makes me sound terrible.  Tracie is going to help keep an eye on them, but I don’t want her stuck in the house with Rob.  She is family and should be able to relax and visit, too.  And, the weather is supposed to be stormy off and on all day.  And, I am just not feeling very patient today.  I just want to talk to people.  Selfish?  Yeah, but that’s how I feel.

Last night, I found out Mandy’s plans had changed for the day and she told me to ask him if he would rather go to her house.  Truthfully, I know he would much rather do that.  She is even going to take him out for supper somewhere.  He will be happier.  I will be happier.  Casey will be happier.

I still feel guilty.

I am a firm believer in people with autism pushing their limits.  They need to experience life and all the joy that comes with it.  They need love and support to learn about the world.  I think I do a pretty good job of pushing them.

Today, I just don’t want to.

Today, I want to take pictures of Lacey and her party guests.  I want to sit down and actually eat a meal.  I’m not sure when I did that last.  Probably lunch with Tracie on Thursday.  I want to laugh with my brother and talk to people.

I want to watch Casey have fun.  I want to wonder what she is thinking as she watches other people.  (Though, honestly, much of what she is thinking is – I’ll sneak another cookie when mom isn’t looking.  😊  Her mom isn’t as blind as she thinks!)  I want to help with anything Lacey needs or just sit and watch clouds go by.

My head knows I’m doing the right thing by taking him to Mandy’s.  He will love having her all to himself and she will spoil him.  He doesn’t really want to go to the party, anyway.

But… My heart is worried that he’ll think he isn’t wanted or welcome there.  My heart aches that he ever feel that way.  As so the war between head and heart rages.  I hate it.

I wish he was able to say he doesn’t want to go – or that he does!  It’s silly, of course, as I know Rob.  A choice between this party and Mandy is a no brainer – he will always pick her.  I feel guilty because I’m not asking him. I’m just doing what I think is best.  As a mom, that’s what I do.

But, he’s an adult and should be given choices.  And yeah, I know – he is a child in many ways and still needs guidance.  I just always try to give them choices whenever is possible.

I hate mom (or dad!) guilt.

I can hear Mandy’s voice in my head – get over it, mom.  He doesn’t want to go to the party.  😊  So that’s my plan. I still feel guilty not asking him what he wants to do.

But one thing I have learned over 30 years of living with autism… Sometimes, you gotta do what’s best for you and your other kids.  Today – that means Rob will be going to Mandy’s to be spoiled while Casey and I go celebrate Lacey.

It’s hard to do, but please – throw away the guilt and do what’s best for you sometimes.  You deserve it – you need it.