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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Autism and a Question

Autism and a Question

Who makes the rules? I know that seems like an odd question for a Christmas post, but really, I do want to know. Who makes the rules? The rules that decide why behaviors with autism aren’t “right”? Who decides?

I took Casey and Rob to see the Wild Lights at a zoo last night. Casey was so excited that she giggled the whole drive (about an hour and a half). Rob reminded me the whole way where we were going and he was going to see “boo” (blue) lights and a lake.

Our first stop is almost always a train ride that loops around a small part of the zoo. We got in line and Rob was so excited that the line was along the tracks and he could watch the train coming and going as we waited to buy our tickets. They both had huge smiles on their faces. Rob was humming and bouncing, but not moving out of one spot. Casey was smiling and rocking slowly back and forth. Both were obviously excited.

In front of us was a man, woman and five kids, ranging in age from maybe 1 to 6 or7. All of the kids, except the baby who was being held) were dancing around and squealing – just being kids, until the oldest decided to climb over the rope barrier and pull at the strands of lights covering the bushes. Then the other ones followed suit. Casey and Rob just watched, but really, couldn’t have cared less what the kids were doing. The parents, meanwhile, are completely ignoring the fact their kids are pulling lights off of the bushes.

Finally, the mom yelled at them and made them come to her. Casey giggled at the kids getting into trouble, but it wasn’t obvious. So the little angels are standing in a group whining for everything under the sun and the mom glared at Rob. He was standing well out of their way (he hates getting too close to anyone!), but he was humming and rocking a little louder and faster and apparently, she didn’t approve of the noise.

I’ll be honest, if he was loud, I would have asked him to use a quieter voice, but we were in a line of people all talking and laughing and beside a set of tracks with a train coming and going every few minutes. I barely heard him – and I was standing right beside him. So, I watched her and decided since I was wearing a Grinch hat, I might as well act like one. She whispered something to her husband and pulled the kids farther away from us (cause, you know, autism is as contagious as COVID) and glared again. And the kids yelled louder.

We stepped up as the line moved. She turned to me and asked me not to crowd them. At this point, we were probably three feet from them – in a line. I smiled and said we wouldn’t crowd since her kids needed plenty of room to move. (not being sarcastic – we all know how kids are in line!) She popped back with “at least they aren’t making that annoying humming noise” Without even thinking I said, “yep, you are right – yours are destroying the hard work of the zoo workers.”

By then, her husband had their tickets and they moved on (and thankfully, were the last passengers on that train!) and the sales guy was laughing when I stepped up. “Good for you!” was all he said before “Merry Christmas.”

Casey and Rob enjoyed the train ride and seeing the lights in a tunnel, but I was wondering – who decides it’s ok for kids to cross barriers and pull at lights, but not to hum and rock in place?

When they needed to use the restroom, we ran into another “rule-maker.” The zoo has family bathrooms that just have one toilet, but it’s a bigger area if you need to change an adult. No one was using it, so I sent Casey in and when she was done, Rob used the bathroom. Meanwhile, another lady was sitting on a bench watching. As I waited for Rob to come out, she decided to tell me how family restrooms were to be used – and it wasn’t for people “like” us.

I thought maybe she didn’t realize they had autism, so I tried to explain. She cut me off and said they didn’t need to use the family restroom, as they were capable of going into the restrooms. I tried again to explain that it wasn’t safe for Rob to go in alone and neither could be trusted to wait outside while I helped the other. She declared again that they weren’t little, weren’t handicapped and that I just didn’t want to wait in the line like I should.

It’s Christmas, so I smiled and told her she was certainly entitled to her useless and unwanted opinion and to have a Merry Christmas. But, really – who decides the rules for the family restroom? Who decides that autism isn’t a disability? Who decides what’s best for my kids? (I can answer that one – me! It was just rhetorical.)

Casey and Rob were completely unaware of her, as they were distracted by the light show on the lake, but as we sat and watched, I wondered again. Who makes the rules? And what gives perfect strangers the confidence to believe they need to share their opinions with me? I didn’t tell the mom by the train her kids were brats and she needed to stop them. What gives her the right to tell me? (Besides just bad manners)

And now I’ll give you the answer to my question – who makes the rules? Society. But the thing is, the rules change and need to be changed. So don’t avoid taking your child anywhere! Only by taking our families to the zoo and to the park and to restaurants and to stores will society begin to know us. And once they know us, and autism, they won’t be as concerned about it. We’ll be just another family waiting in line for a Christmas train.

Don’t be scared to go out. Prepare yourself and enjoy. Maybe you’ll have to make short trips, at first – only you know what your child can handle. I’ll be honest – there are places I don’t take Casey and Rob, but it’s not because I’m concerned what others will think. I know what they can handle and what they will enjoy. I wouldn’t drag a typical child to something they wouldn’t like – why would I take a person with autism?

Perfect your glare. Stiffen your back and remember – you and your family have every right to enjoy and experience the same things every one else does. Remind yourself this quote by Dr. Seuss “Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.”

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Autism and the Christmas List

Autism and the Christmas List

Every year, Casey has a list of things in her mind that we have to do for her to have a wonderful Christmas. It’s never anything too complicated, but she’s already reminding me of what all she wants to do.

They were both excited to go to the Christmas Parade. It was so cold and windy, but they were bundled in sleeping bags. I was kinda hoping it would rain so I would have a good excuse not to go, but after seeing how happy they both were, I’m so glad we got to go. Casey started waving to Santa when he was 3 or 4 blocks away and didn’t stop till she couldn’t see him anymore. It completely amazed her when Santa waved back to her. She giggled the rest of the evening about that.

Rob has learned to cover his ears as soon as the fire trucks get close to us. This is such a huge step for him – to be able to take care of what he needs by himself. Three years ago, I had to stand behind him and cover his ears for him. Last year, I had to remind him the trucks would be loud. This year, he handled it all on his own.

They were both really surprised when I took them to a light display the night before Thanksgiving. It was a mild day and seemed to perfect to not take advantage of it. They both enjoy the music and light show, but once again, I was reminded to not get too comfy when we are out and about. When we stood up to leave, they both took off for the car and I had to grab both to keep them from walking right into the street. Proof once again that just because something hasn’t happened in a while, doesn’t mean it won’t. They both got a stern lecture about staying with me, but they were more focused on a snack than their own safety. 🙁

Casey has finished some of her shopping and all I’ve heard for the last hour is she needs to wrap it – tonight – before her bath. And that she still needs to go shopping and that she wants to go – now. Rob has almost finished his shopping. He likes to pick out gifts, but he’s not worried about it. He knows I’ll make sure his shopping is finished in time. Once December gets here, Casey is in Christmas mode.

We got to enjoy a Christmas movie Saturday morning (our local theater plays sensory friendly movies several times a year) and then a light/inflatables display at our fairgrounds Saturday evening. Two more things checked off Casey’s list.

She has reminded me that we need to get grandma and go to the “biggest fairgrounds” and see lights and have a snack on the way home. She has reminded me that we haven’t gone to the zoo lights, yet, and last year, we went the Monday after Thanksgiving, and it’s not right we haven’t gone, yet. (The fact that it’s been cold and rainy doesn’t matter to her – only the schedule in her mind).

It can be hard to find Christmas activities that you feel safe taking your child to. Just remember that your Christmas traditions don’t need to look like mine or your best friend’s or your neighbor’s. Your traditions should fit your family. Maybe a movie night at home with everyone wearing PJ’s and throwing pillows and blankets on the floor in the living room.

Maybe it’s making cards or pictures as gifts. Maybe it’s putting lights and no ornaments on the tree. Whatever your traditions are, enjoy them. Don’t worry about everyone else – just enjoy the magic of the season with your family.

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Autism and the Love of a Niece

Autism and the Love of a Niece

I haven’t shared this, yet, but a month ago, we had a perfect little miracle join our family. We lost Raylan a year ago and on his birthday, his miracle baby sister was born. To say we feel blessed is an understatement. It was an instant love for all of us. Words can’t describe the joy little Rosie has brought to us. And she showed again the big differences in the way Casey and Rob feel about things. For anyone who still believes those with autism don’t show feelings, they need to watch Casey and Rob with the baby.

For months, Casey talked about Rosie. She wanted to shop for her. She wanted to plan the baby shower. She wanted a new dress for the shower and simply couldn’t wait. We did have a few bumps when I realized that she thought Rosie was actually my mom (her name is Rose) and she didn’t understand why we were buying Grandma baby things, but she went along with it because… well – it’s shopping! 🙂

Rob never mentioned the baby. He firmly said no to the baby shower. He didn’t get excited. He didn’t ask questions. He didn’t worry that we were calling anyone Rosie. He just went along with everything with his usual laid back attitude.

But then…. Rosie was born.

And Uncle Rob cannot get enough of her. When I took them to meet Rosie for the first time, Rob couldn’t stop grinning and giggling all the way to Mandy and Cory’s house. “Rosie. Rosie. Rosie.” He looked at her and grinned. Casey was rocking back and forth with a huge grin on her face as she watched us with the baby. She couldn’t wait to hold her. She was a little nervous, but so happy. Until… she touched Rosie’s cheek and hands – and Rosie moved her arm. Casey jumped and was done holding her. It was too funny – Rosie’s little movement scared Casey. I don’t know why – maybe she thought since she was so little, she was a doll.

Rob wanted a turn, too. Only – he didn’t want to give her up. He pulled her right to him and carefully touched her cheeks and her hands. I asked if he was done and he said no. He just studied her and held her close.

The second time they met, Rob was ready. He cuddled her close again and her movements fascinated him. But the best part – he leaned down and carefully kissed her cheek. Mandy and I were both close to tears to see that. His eyes were twinkling and he had the cutest grin on his face. He is so in love with that little girl. Casey held her again – but only to get a picture taken and then she was done. Now that the party and shopping are over, she isn’t all that interested right now. And she insists on calling her Rosalyn, not Rosie.

I still hear others say people with autism are unable to show emotions or form close attachments. I’ve yet to meet someone who was unable to find humor or show love or compassion. Maybe it looks a little different than what we expect. Maybe they can’t say the words, but their eyes will show their feelings, whether it’s love or humor or sadness or anger. Learn to read eyes and you will find the way to someone’s true feelings. Let go of the expectations you might have of how someone shows love and meet them at their level.

Autism may prevent Rob and Casey from saying “Love you” to little Rosie, but their shining eyes and huge smiles are proof that she is a well loved niece already.

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Autism and Family Isolation

Autism and Family Isolation

I’m not telling any of you anything you don’t know. Autism is lonely at times. Lots of times. Not just for the parent who may feel no one can really understand what their life is like, but also as a family. While others may be talking about their wonderful vacations, autism families may just be hoping for a night of sleep or being able to eat out as a family. Some days, autism is just tough.

I remember the isolation. I was so happy for my friends when they got to take their kids places, but …. I’ll admit…. I was jealous at times. And I hated that Mandy was missing out on those same things. They never stayed in a hotel until they were 6, 7 and 10. It simply wasn’t possible. Rob and Casey were unable to sleep at home, let alone a strange place. And their noises were impossible to quiet. It was safer to stay home.

In 2002, we took them to the Smoky Mountains and to the beach in North Carolina. By then, their behaviors were calmer and they were both less likely to dart away. We didn’t stay away from home long, but it was an amazing trip for all of us. We even went back to the Smoky Mountains a few years later. (While they love the beach, the mountains are even more calming to Casey and Rob).

But, in our every day lives, we were isolated. We didn’t go to movies. We didn’t go out to eat very often – and never somewhere that would take long to get our food. When the kids were older, we added a backyard pool and always had friends over. Those were the best times! I still felt lonely, at times, though. It’s hard to describe what our lives were like to others. And, honestly, I didn’t want to try. Back then, I was embarrassed by some parts of autism. Now, I just don’t care. If someone doesn’t like us, they are welcome to stay away. 🙂

The loneliness is a big reason I would encourage each of you to find a support group. I helped organize one in our area many years ago and stopped going for a long time. Last year, we started another one and it’s growing. It feels so good for even experienced parents like me to be around other parents – both experienced and new – and just know that I’m not alone in this walk with autism.

It helps to hear others’ ideas for things to try with Casey and Rob. Sometimes, you can’t see new ideas because you are too close. Outsiders can think more clearly about the situation.

The best part, though, is we plan activities for special needs families. We had a race car visit us and a fire truck came another night. Today, we had a trunk and treat for special needs families. To let Casey and Rob walk around and be themselves is just the most amazing feeling! Everyone knows them and everyone keeps an eye on each other. It’s a wonderful feeling to be part of a huge group that loves and accepts Casey and Rob just as they are.

If there isn’t an autism support group in your area, start one. You can advertise on Facebook or in school newsletters. You may not have a huge turnout, at first, but keep trying. Even if you just become friends with one other autism parent, that’s one more friend for you. The main goal for our group is that no one feels lonely and it’s a goal that we take very seriously. Find a group. Find support. You will all be better off for it.

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Autism and the Love of Siblings

Autism and the Love of Siblings

Anyone who has followed our story knows I often talk about how close all of my kids are. Mandy has always been Casey and Rob’s biggest defender – and tormentor – and teacher – and the one who has gotten hurt the most by autism. She will deny it forever, but I know that there were days she didn’t like autism very much. But – we all have those days. Now, Rob has Cory to look up to and model.

Keeping Rob’s face clean shaven is a chore that neither of us particularly like. I leave it up to him when he wants me to shave him. A few weeks ago, he decided he was going to grow a beard like Cory’s. Every time I mentioned shaving, he covered his face with his hands and said no thanks! I had my doubts that he would grow a full beard, but it’s his choice. He lasted longer than I thought before he asked to shave. I think he was disappointed his “beard” wasn’t as full as Cory’s so he wanted it gone.

Rob doesn’t like new shirts. He insists on the same type of shirt with the sleeves cut off. We were in Kohls a few weeks ago and Mandy found a shirt for him to look at. He refused it – tried to put it back on the shelf. Until Mandy said the magic words “Cory has one like this.” So Rob bought it.

Rob is a follower. He watches Casey, Mandy and Cory for signs of what he needs to do. He won’t wear a coat unless Casey does and he chooses which coat to wear based on what she’s wearing. He wears boots when she does (and doesn’t understand that sometimes, girls wear boots to dress up a little 🙂 ) and he checks that there are two lunch boxes every morning.

Several months ago, Cory got a new truck. We were at their house one day and a friend of Cory’s stopped to see the truck. Rob was outside, too, and so happy and excited that he could hang out with Cory and Collin as they talked about the truck. That’s what Mandy and Cory do for Casey and Rob – they include them in everything. So many siblings are tired of autism and disabilities and I completely understand that, but somehow, I got lucky enough that Mandy and Cory want to spend time with them.

Casey doesn’t tend to follow others. But she is careful to watch out for Rob when they are together. And Rob knows that Casey feels safer holding onto someone in crowds so he holds her wrist (she is not a big fan of holding hands very often) or puts her hand on his arm. They both feel safer when they are together and as much as they annoy each other at times, I wouldn’t want to be the person who tries to hurt one while the other is there. I think there would be a fight – and my kids are too stubborn not to win.

But for all the ways they protect each other, they are just as likely to annoy the other one. Just like typical siblings. She’ll change the radio station away from the song he is listening to. He’ll play his iPad loud while she is trying to watch a video. They rush to get to a certain chair at grandma and grandpa’s house and will take it from each other. He will touch her plate and giggle. She will open his door and turn on his light (he hates that!).

We went to a Halloween dance the other night and once again, I heard “They aren’t anything alike – why not?” For some reason, since they both have autism, people expect them to be just alike. Even twins are not exactly the same in every way! While my brother and I are a lot alike in some ways, we are very different in others. I’m not sure why siblings with autism are expected to behave exactly alike.

Casey, Rob, Mandy and Cory are alike – and different. They are each perfectly who they are meant to be! Autism doesn’t define them or our family!

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Autism, Guardianship and Parenting – A Difficult Dance

Autism, Guardianship and Parenting

Several weeks ago, I was asked why I chose to be Casey and Rob’s guardian and what exactly that meant for them. I meant to write this that week, but… I forgot. So, here goes.

Please remember that every state (and sometimes, every county) has different laws about guardianship. Do not take our path as the legal answers you want – you need to talk to a lawyer in your area who specializes in family law. It may be hard to find one, but this is not a decision you want to make lightly. Spend time finding the best lawyer for your needs.

A guardian is someone who is approved by the court to make medical and financial decisions for someone with a disability (or an elderly person who may need help). That’s the simple definition. You can be a guardian for the person (medical), the estate (financial) or both. I am both for Casey and Rob. There has never been a doubt that they would both need a guardian when they reached 18, as neither of them understands money enough to make decisions, nor can they make health decisions.

Remember – when your child reaches 18 (or graduates – it’s different everywhere, so be sure to find out the law in your state) you can no longer make any decisions for them. You can’t legally call your child’s doctor and ask a question. You can’t ask a pharmacist about your child’s medications. You can’t talk to their health insurance company. You can’t talk to Social Security, a bank. You might as well be a stranger trying to get information.

Now here’s the tricky part – trying to decide if your child needs a guardian. For some, they may only need a guardian to help them make medical decisions – when to go to doctor, what medicines to take, etc. For others, they may need a financial guardianship to protect their assets and pay bills on time.

It’s sad to say, but thousands of people with disabilities have been scammed because they had control over their money. They may be tricked into signing documents giving away property or money.

Deciding to be your child’s guardian can be a tough choice. As a parent, you want to give them all the freedom of being an adult, but you also want them to be safe. It’s truly a fine line for some parents to walk. I’ll admit – it’s easier for me, as Casey and Rob don’t seem to wonder why Mandy got to do things that they never did.

They look at home as their safe place and to me for their needs. They have only been able to tell me they need a doctor in the last few years and don’t know their medications or why they take them. (They do both know the medications make them feel better, tho.)

They understand the idea of money – that they need it to buy what they want. Rob seems a little more aware of the values on dollar bills than Casey, but he doesn’t care. He just wants to buy his cards or his snack mix.

The hard part of guardianship is that, even though you can make medical and financial decisions, you can’t make personal choices for them. I can’t tell Casey and Rob they aren’t allowed to smoke or drink or steal. I can advise them not to, but I can’t forbid it. That goes against their rights.

I can’t tell them to stop eating junk food or to go to bed or what to buy or who to be friends with. Those are parental decisions – and you are a guardian. Confusing? Yes.

If you decide to become a guardian, visit the probate court in your county and get their advice. Remember, laws are different every where. I used the same lawyer for both Casey and Rob.

For Casey, I had to have a background check and be bonded (insurance so if I decided to run away with all of her money, she could get it back). She had to go to court with me and meet the judge. I then had to keep a list of what she spent her money on and send it to the court at the end of the year.

Things were different for Rob. We had a different judge. Someone from the court met with Rob for an interview so he wouldn’t have to go to court. (The interview went something like this “hi Rob, can I ask you a few questions?” His response? “No thanks” as he left the room. 😊)

This judge also redid Casey’s file so I didn’t have to be bonded anymore or keep track of her money. (I do still keep records, just in case, but I’m not as paranoid about it.) Each December, I have to file a guardian’s report with the court and I gave to take a three hour continuing ed course every summer.

Guardianship is tricky, but very necessary at times. You are the best judge of what your child needs, but you may have to prove guardianship is needed to your county probate court. It’s not an easy decision to make.

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Autism and Typical Sibling Behavior

Autism and Typical Sibling Behavior

Every mom knows the scene. One child is upset and the other is making things worse. I’ve shared before how Casey and Rob will try to irritate each other at times, just like typical siblings.

It happened again last week. I’m still not sure what was upsetting Casey, but she yelled once. I went to her to try and calm her before she lost control and seemed to be making progress – until I saw her eyes change and another yell came out.

At the same time, I saw a reflection behind me. Want to guess who was standing in the hall laughing at Casey? Yep… Her sweet little brother. 🙂

I told him to leave her alone and go watch TV. Rob pointed at her and said, “No fits, Casey!” as he turned away, giggling. She was furious! I stepped in front of her and started talking about different things we would be doing this week and she calmed down.

Until we went to the living room and Rob started in on her again. “No fits. That’s bad. No yelling.” And he was laughing. I finally had to send him to his room with his iPad so I could calm her down.

Don’t believe for a minute she never picks at him. Yesterday, it was his turn to pick the CD in the car. He did and I asked Casey to put it in. Instead, she picked what she wanted. When it started playing, he went on repeat “mix! Mix! Mix!” While she looked straight ahead with a big smile on her face. (I changed it to his, but she kept turning around and grinning at him).

While they do pick at each other, they are also fiercely loyal and watch out for each other. Casey will tell me if someone is mean to Rob and Rob holds her hand when we are in crowds. (Neither of them like crowds, but she wants to hold onto someone so she feels safer).

When he can’t find her, he asks where she is. If she gets home first, she asks for him (though, often, she doesn’t think about him until her color by number pages are done! 🙂) But, that’s siblings for you!

I’ll admit, it’s frustrating to me when they pick at each other, but at the same time, I’m proud of them. They are siblings first – autism is secondary to that and it shows!

Autism doesn’t define them and you shouldn’t let it define your child, either. Autism is just part of who they are, like their hair or eye color. Your child with autism needs the same rules as your typical children.

Enjoy the sibling squabbles. Be happy they are aware enough of each other to argue like siblings always do.

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Autism and Communication Struggles

Autism and Communication Struggles

If you follow our Facebook page, you already know the last few weeks have been a struggle for Rob. He continues to amaze me with what he is willing to try, but I’ve been frustrated with autism and communication struggles a lot lately.

Rob broke a tooth (I shared the struggle to find a dentist to help him) and we are still trying to work through that. The dentist who saw him wanted him to come back and get a comprehensive exam so when he was sent to a specialist, they would have all of the information they needed. Rob went to the specialist, who told me it would be months for him to sedated and he wanted me to bring Rob back and he would attempt to pull it in the office. So I called the first dentist back to see if they would be willing to try. (They are 40 minutes from home – the specialist is 2 hours)

Meanwhile, Rob is still struggling to deal with the tooth pain. I don’t think it hurts constantly, but I can tell there are times he just doesn’t feel well. He hasn’t said anything about it, but with his high pain tolerance, that doesn’t mean it’s not getting infected or that it’s not painful. I do know he is tired of me asking if he needs medicine for it and if he is okay.

And while we were dealing with this, Rob stumbled in the driveway. He showed me his skinned knee but never said anything else. (And honestly, he only showed me his knee because I saw him fall and made him pull his pants up so I could look!) The next day, we went to the pool but he refused to get in. He sat and watched Casey. I thought his tooth was hurting. All he would say is “Hurt” but would not show me where. The next day, he was limping a little, but I thought his plantar fasciitis was flaring up and treated it as such. He wouldn’t say his foot hurt.

By Tuesday evening, he was crying for the doctor, but he still had no swelling, so I assumed it was the plantar fasciitis and gave him ibuprofen and ice. Wednesday morning, he wouldn’t put weight on his foot and it was swelled the size of a softball. I knew it was bad when their shuttle came and he made no effort to get up and go. I took him to the doctor and she was concerned he had a fracture so we had to get x-rays.

Again – I have to brag about how well Rob did. He was actually using a knee scooter because he couldn’t put weight on the foot. The tech turned his foot different ways and even when it hurt, he held perfectly still and let her take pictures. The x-rays didn’t show a fracture, so we treated it as a sprain and he was fine with staying off of it for a few days. Luckily, he felt better in a few days. He’s still not walking like usual but he’s definitely on the mend.

Which brings me to my frustration. If it wasn’t for the communication struggles with autism, he could have told me Sunday his ankle hurt and I wouldn’t have been telling him he needs to walk and stretch it, like you do with plantar fasciitis. I would have called the doctor sooner. Just like his tooth – had he been able to tell me, it wouldn’t have gotten so painful for him. I can handle what autism throws at me, but sometimes, the communication issues just make me want to cry.

He was in pain for days before he could tell me. (and yes, I do know his high pain tolerance was probably part of the problem, too.) Casey is struggling right now, too. She is anxious and her OCD is flaring up. She is on edge often and she can’t tell me what’s wrong. She has never been one to deal with anxiety, but it’s becoming obvious something is going on with her. Until I figure out the right question to ask, which is nearly impossible at times, I just have to wait until she can tell me.

I have guessed several things that might be bothering her, but she says no to each of them. Meanwhile, she is getting upset several nights a week. Even if she controls her screams, the tension in her body is obvious. So, again, I have to wait for autism to let her tell me what she needs. I’m frustrated. I’m sad. I’m tired. I feel guilty that I can’t guess what they need more often. I’m stressed because when she is on edge, so am I. It’s like waiting for a bomb to go off. 🙁

In so many ways, they have changed the last few years and are showing an independence I never thought I would see. I can brag till I’m blue in the face about all of the amazing things they are doing, but the communication struggles just bring me to my knees some days. Like every parent, I want to help them when they need it and autism prevents that some times. So I get frustrated – not at them, but at autism, and sometimes at myself for not asking better questions. Unrealistic? Yes. But, I still feel that way.

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Autism and Dental Visits

Autism and Dental Visits

Last Monday, Rob pointed to his cheek and said, “Hurts!” I was worried because he has such a high tolerance for pain that if he says something hurts, a typical person probably would have been crying about it days before. But, I couldn’t get him to tell me what hurts – whether it was inside his mouth or his cheek. He ate supper and didn’t mention it again that evening.

Tuesday morning, he got up and again said, “Hurts” pointing inside his mouth this time. I asked if it was his cheek or throat or a tooth, but he just kept repeating “Hurts.” He didn’t have a fever and was eating, so I was worried, but not panicked, yet. I did call his neurologist to get advice on where to take him to the dentist, if it turned out to be a tooth. I looked in his mouth, but couldn’t see anything obviously wrong. Because his allergies had been bothering him, I almost thought maybe it was sinus pressure. (My teeth ache at times from that).

When he got home that day, he was hurting. Obviously hurting and he could finally tell me it was a tooth and he pointed to it. I felt terrible for not calling the dentist that day and did what I could for him that evening. He was still eating without issue, but he told me “hurts” repeatedly through the evening and was asleep early. I cried. I just couldn’t help him and I felt so guilty for not making more calls that day. (But, again – I wasn’t sure what the problem was – he didn’t tell me tooth until late in the day.)

Wednesday, he wanted to go to day hab with Casey, even though I wanted him to stay home so I could keep an eye on him. As soon as dentist’s offices opened, I started making calls and it wasn’t long before I was ready to cry again. I couldn’t find anyone to even look at him – that would even try to help us. I was told they weren’t trained for these types of people – that they didn’t think they could help him – that I needed to find someone who “knew” autism. I finally found a place that was two hours from home that would happily look at him – but they wouldn’t take his insurance. I told her I would happily self pay just to get him some relief, but she told me they couldn’t do that.

After many, many calls, I finally found a place only 45 minutes from home that said they would be happy to see him and made an appointment for early the next morning. I had a good cry when I got off the phone – finally, someone who cared enough to at least try! I had no doubt that Rob would be difficult, but we needed help. I wanted to call those other people back and say, “What about helping people? isn’t this why you became a dentist??” but I didn’t.

I worried all evening about how Rob would react to a new place, a new doctor and new experience. He was in so much pain, he didn’t even make a fuss when Casey left without him. When we got to the office, I told him I would get him construction paper as soon as we were done if he would let the dentist see his tooth.

Rob walked in so calmly. When the tech called his name, he jumped right up and followed her. When we got to the cubicle, he sat right down in the chair, looked at the tech, said “Hurts” and opened his mouth to point at the tooth. I was in shock, but so happy! She asked him if she could take an x-ray of his mouth and again, he got right up and followed her. Once he understand what he had to do (bite down and hold still) he was perfect. The x-ray showed a broken tooth. Our choices were a root canal or pull it and I told her it just needed to come out.

He went back to the cubicle and sat down. When the dentist came in, he opened his mouth and showed him the tooth. The dentist talked to Rob, not me (that was so awesome of him!), and Rob let him put a temporary filling in with no issue. (The only problem came when some of the filling stuff was on his tongue and the dentist told him to stick out his tongue and he looked at me to see if that was okay. 🙂 ) They gave him antibiotics and he goes back in two weeks to see if he will let them pull it. If he won’t let them, an appointment with a specialist will be made and that tooth and his wisdom teeth will all come out under sedation. The office we went to will use nitrous gas next time and see if that will relax him enough to pull it.

When we left, I was in tears – again. I kept telling him how proud I was – that he did so awesome. He looked at me like I was crazy (again) and reminded me I promised construction paper. We found a store and he chose three big packs, plus two new books. I don’t care if I over did it. I am so proud at how he handled it all! I have hopes that he will let the dentist do what needs done the next time, too, but pulling a tooth is much scarier that having x-rays, so we’ll see.

This was a huge reminder that we never know what our kids are capable of until we let them try! Never in a million years would I have dreamed he would be so cooperative (I have many terrible memories of taking him to the dentist as a child – I’m sure everyone in the building heard his screams). Let your kids try! The worst that can happen is you will have to leave and try again another time. Who cares if they cry? or scream? Don’t worry about what other people think.

If I had one wish from all of this, it would be to all of the doctor’s and dentist’s and other medical people – please, please… don’t ignore us. We need help and every time one of you turns us away, it’s like another knife to our heart. We know our kids need extra help. We know it may be a terrible experience for you – but we need help as much as everyone else. Welcome us. Tell us you will try. Even if we have to go somewhere else, at least we know you care enough about our child to try and help. That little effort means so much. Don’t turn us away before you try.

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Self-Care and an Autism Parent

Self-Care and an Autism Parent

Repeat after me… “I have to take care of me so I can take care of my child.” How many times have I said that to you? How many times have I admitted that I’m not very good at it? My head knows, but sometimes, I still feel guilt when I just sit.

I realized last night I was running on empty when I was getting anxious because I hadn’t finished a project. The crazy thing is – this project is a hobby! Something I enjoy doing. I was getting anxious because I hadn’t had time to finish scrapbooking several pictures.

Somehow, I let a hobby I enjoy become something that had to be done. I tend to do this when I haven’t taken the time to do something for me. Usually, walking and working out help keep the anxiety away but with the foot injury, it’s been months since I’ve been able to do either.

Another reason I noticed that I hadn’t done much for myself was a blog I read by a young man with autism. If you haven’t read Dustin’s Dynasty, you are missing out! His perspective as an adult with autism is helping me learn how Casey and Rob might feel about different things. He is learning how important it is for him to take care of himself and said he struggled with doing nothing.

Wow – that hit me right between the eyes. I am rarely doing nothing. I have my computer on my lap or I’m crocheting or I’m working on another project or I’m reading. I don’t sit and watch TV without doing something else, too. This works for me – until it doesn’t.

When I realized my hobbies were causing me stress, I knew I had to change things. Last night, I sat on my patio and watched the birds. I listened to the wind chimes. I daydreamed about pool days. Once or twice, guilt tried to sneak in – I should be sweeping the patio or powerwashing the house. I shoved those thoughts away and went back to watching the birds.

I’ve heard so many other parents say they have given up hobbies – they spend all of their time taking care of their child, their home and working. They can’t sleep at night, they are gaining weight, they have forgotten how to watch the clouds. I completely understand this, but… It’s not a good life for you or your child.

We already worry about who will care for our kids when we are gone. Taking care of yourself now will help you avoid preventable health issues – heart disease, high blood pressure, diabetes – that can all be prevented or controlled by you taking care of yourself.

A break from autism is wonderful and needed at times. But, there are many ways you can care for yourself with your child. Go for walks (put your child in a wagon or stroller). Play on a playground. Share your favorite hobbies – let your child paint, take pictures, play an instrument. Craft with your child.

Practice healthy recipes together. Go on a picnic. Go bowling. Play miniature golf. The ideas are endless. And yes, you may have to adapt your outings to fit your child’s needs. But, right now, your needs are more important. You have got to take care of you!

I’ll be the first to admit – I’m struggling with guilt right now. The floor needs swept. A few windows need cleaned. I need to meal plan. I have two stories the need written for the paper. But – I’m going to watch a favorite movie and maybe take a nap.

There are days when I have no energy or desire to do anything. I need to remember that it’s ok to do nothing. To sit and recharge myself without guilt. No energy is my body’s way of reminding me I’ve pulled myself too thin again and I need to chill out and do nothing.

Push away the guilt. Let yourself recharge before you crash. If you crash, so will your child. Take care of yourself for them if you can’t relax for yourself. I challenge you – every day for the next week, do one thing for yourself. It doesn’t have to be a big thing – just something for you. Watch TV. Read a book. Watch the clouds. Go for a walk. Savor a milkshake. Anything – just for you!