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 the Little Things

Autism and the Little Things

With all the craziness still happening in the world, I thought I would share some bright spots from our week – and show the autism doesn’t always win!

1. Rob asked for a haircut! Yes – you read that right! When he was small, hair cuts were a nightmare for him and me and usually involved me holding him tight against me as my mom used the scissors. By the time it was over, he was screaming, I was crying and we were both exhausted. Now, I know it was all sensory but, at the time, it didn’t really matter.

He has let me use clippers on his hair for years (I never have figured out why the scissors were more terrifying than the buzzing clippers) but today was the first time he asked for one. Then, he stuck his chin out and made me understand he wanted a shave, too! I’m still amazed! 🙂

2. Another Rob thing… Trimming his nails. Again, it used to be like trimming nails on an octopus. He hated every single second of it and fought like a wild cat. He’s been okay with having his nails cut for a while now, but he really doesn’t like it.

Tonight, as I cut them, he inspected each nail and if I didn’t cut it enough to suit him, he folded all the other fingers and stuck the one that needed done again in the clippers. 🙂

3. Casey roasted her own marshmallows! While she loves them, she has always been scared to be close to the fire pit. Tonight, she did it! Very carefully, but with a huge grin on her face. It was so exciting to see! 🙂

4. We went for our walk one day last week. When we got home, I asked Casey to get the mail for me. Our mailbox is beside the street and this is always been something I never dared to have her do.

She was so proud to open the mailbox and bring the mail to me. She even waited in the yard for a car to pass before she looked in the box! 🙂

5. Rob swept his room! He has before, but it’s often a quick brush and not really done well. This time, he moved his shoes, containers of blocks and the fan. He even swept behind his recliner and door. He doesn’t like to use the sweeper, but he’s getting awesome with the broom! 🙂

6. There are signs along the path we walk – little things to build conversation between families. (these are new and change often since the social distancing started…. Walking is about all families can do together away from home.) Anyway, Casey was beside me and Rob was several feet behind us.

I read one to Casey that asked her to name three things that start with R. She said Rob, red and Rose. I tried another letter and she answered again, but said done.

Since it was quiet, I realized I could hear Rob. He was reading all of the signs and even answering some of the questions! He talks so quietly, I hadn’t heard him before. More proof that there is so much in their minds that we may never know about! 🙂

7. This one has been happening for a few weeks, but I’m still so excited about it that I wanted to share it again. Rob doesn’t like change in his routine and I always try to tell them before they leave in the morning (you know – before social distancing and the fact we are all here together! 🙂 ) who would be here when the shuttle brought them home or if Grandma and Grandpa were picking them up that day.

We decided to try personal care services and split Casey and Rob up. She is fine without him, but he relies on her a lot when they are together (though, in crowds, they reach for each other and hold hands 🙂 ). His buddy Bob would be taking him places, while Casey would go with Reagan. I knew Casey would be fine and she was beyond excited to go.

Rob, though – I had serious doubts. Especially since they would have to wait at their day hab until Bob and Reagan were ready and most of their friends would have left. But – Rob was awesome! He waited for Bob and never got anxious at all. Now, he gets so excited when he knows Bob is coming! Another big step of independence for him!

To anyone outside an autism family, these things may seem not worth mentioning at all. To me, they are huge steps that show the continuous progress both Rob and Casey are making. It seems every day one or the other shows me something else that they know or can do that I didn’t know about. I love being pleasantly shocked by this!

There were so many years that I doubted either of them would be able to do anything or go anywhere without me gripping tightly to them and avoiding so many places so I didn’t set off Casey’s sensory issues or his anxiety. We were somewhat isolated from everyone but close family and I expected that would continue.

I share these little things to give each of you hope that your difficult days will end, too. Not that we don’t have….umm… interesting… days at times, but not like we used to. If this lock down would have happened when Casey was little, she would still be screaming (snow days were hell – she screamed bloody murder until her regular time to come home, then she slipped right into her after school routine). Now, she is giggling about walks in the park and coloring eggs on Saturday.

I hope all of you are safe and that your loved one with autism is handling this massive change without being too upset. Please take care and look for your bright spots every day! 🙂

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Autism and Staying Home

Autism and Staying Home

I saw a meme the other day that I had to share. Basically, it said that many special needs families are staying home most of the time – that we don’t run and run with kids and other activities. And it encouraged the people who were complaining and losing their minds to consider living like this all the time. Maybe not exactly like this, as in staying home and avoiding everyone, but spending the majority of your time with your loved with with autism, because that’s what they need.

It’s true. While there are thousands of people with autism who thrive on community and doing things (in the way that they need!), there are thousands of other families who can’t easily take their loved one to the grocery store, let alone out to eat or to a park. It simply isn’t safe for them to do so they stay home. For many, many years, this was us. Casey’s meltdowns happened in the blink of an eye and Rob was a runner. It was best for us to stay home. There were times it was a very lonely life – and I know it was for Mandy, too. Casey and Rob were happier in their safe zone.

I’m not saying I didn’t take them places, but we didn’t go often by ourselves. When they got older, it was easier and we did try new things – sometimes, it went well, others is was a nightmare. But, we tried. Staying home was still their favorite place to be. The first real vacation they went on, they were 12, 9 and 8. It just wasn’t possible before that – they weren’t ready and money was tight (medications and therapy take a lot!) They all had fun and even did pretty well sleeping in strange places.

Casey traveled with her aide and teacher for school trips and enjoyed it, but Rob never did that. He wasn’t able or interested in going. After she graduated, she started enjoying new places and new experiences a lot more and now, she wants have something on her calendar every day. (That doesn’t happen – that’s just what she wants! 🙂 ) Rob is more willing to try going new places, if he is with someone he knows and trusts, but he is still happy being at home.

So far, our new “normal” is going okay. Casey doesn’t understand why we have to stay away from people, if she isn’t sick. I have explained that she may have germs and not know it, but she says “Wash your hands!” and still doesn’t understand. Rob has asked for Hopewell, but it’s not constant and he seems to accept it when I tell him it’s closed. I am shocked, to be honest. I never dreamed that they would be doing this well with this big of a change. After all, they are used to being at Hopewell five days a week and it just stopped.

Casey thought Hopewell would be open in April, but I had to tell her this morning I didn’t think that would happen – that it might be May before it opens again. She frowned as she thought about it and I waited for the anger, but she just went to her room. I doubt she will be as understanding when I have to tell her the talent show will be canceled. But, they have both amazed me so far, so who knows?

The hardest part for them is not going to Grandma and Grandpa’s house, or to see Mandy and Cory. We have dropped groceries off, but they sit in the car while I put the groceries in the garage. Casey has asked about going to their houses more than anything else. Social distancing is something she does naturally, but when she wants a hug, she doesn’t understand why she can’t have one. (It’s hard on everyone!)

So every day, we try to go for a long walk. They have their iPads and we have been doing craft projects when they are interested. Rob spent almost 7 hours happily ripping paper the other day. I have no idea why it took him so long – there wasn’t that much paper there, but he was laughing and giggling the whole time, so it really didn’t matter why he was slow. It was enough to hear his giggles. They both love painting and luckily, I always stock up on things to paint when they are on sale. The porch swing is a favorite place of Casey’s and Rob spent some time lifting weights with me yesterday.

I wish I had the words to help them understand what’s happening, but I’m not sure it would help. At some point, they will have had enough and no words will help that. I hope I am patient and strong enough to help them work through their anxiety until life gets back to our normal. Be safe, everyone.

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Autism, The Birthday Girl and Slightly Different Traditions

Autism, The Birthday Girl and Slightly Different Traditions

I’m actually having a hard time believing my sweet little girl is 32 today! No, it doesn’t make me feel old – just seems so odd to think about. She has such specific traditions that she wants for every birthday that I’ve been worried all week about her special day.

We always have special doughnuts for breakfast on birthdays, but I had no idea earlier in the week if I would be able to get to the store to get them so I asked her if it would be okay if we had them for breakfast on Wednesday – and she laughed and said yes! That is huge!! If you could have met the little girl she used to be, you would know just how big this is. You simply do not change routines – ever. And now, look at her! She’s okay with such a huge change to a day she looks forward to all year! (I did buy a little bag of powdered sugar doughnuts, just in case! 🙂 )

The birthday girl (or boy! 🙂 ) always gets to choose where we have supper from on their day. Another cause for stress for me all week – would the drive-thrus still be open today? (In Ohio, everything is closed for inside dining) Luckily, they are and she will get the Burger King she has talked about for a month. I have no idea why she is so excited about BK – we can practically see it from our house. It’s not like it’s some place we never go to! 🙂 But – Mandy will be picking it up for her soon and she’s over the moon excited about her grilled chicken sandwich! 🙂

Usually, my parents come over for dessert and to watch her open presents. They aren’t coming tonight and she seems to be okay with that. She has asked, but when I told her they have to stay home, she just giggled. (It could also be easier, because she knows their present for her is here! 🙂 ) We are going to video call them so they can still be part of the evening. We all need to do our part to stay away from each other and while I don’t think Casey or Rob understands why, they seem to be okay with it for now.

Last year, Casey chose a pie instead of cake for her birthday – we were all shocked! Cake and ice cream are just her things – every time she hears about a birthday, she wants to have cake for that person – or make sure that they are getting one. This year is the same – she chose pie. We do have to put candles on her pie and she sings Happy Birthday to herself as we sing. I’d like to know what she wishes for, but I don’t ask. If you say a wish out loud, it won’t come true! 🙂

I was looking through a box of pictures this morning and it just hit me again how far she has come. How different she is than even a few years ago. While she does still have certain issues, even those can often be worked through before they become huge problems. On her first birthday, I remember people saying how she liked being in her own little world – several times, as she would rarely look at people when they wanted to take her picture. Or really seem to care whether we were there or not. Some days, I wonder why I didn’t realize she had autism then. Except that no one knew anything about it 31 years ago.

Just now, she asked about going to Grandpa’s house tomorrow for his birthday. I had to tell her no, that we could go another day and she laughed and said another day! I am just so proud of her! She may not understand completely why everything has changed in the last week, but that she has taken it in stride this far is beyond my wildest hopes.

I want you all to remember how far she has come when you have bad days – those days when you are beyond exhausted and just don’t know what to do anymore. You have no idea how far your child will go – don’t stop dreaming and hoping and working. I can’t promise your child will accomplish everything, but I know if you never give up hope and have faith, one day, you will look back and see how far they have come, too. It may not look like our journey, but it will be amazing to you. 🙂

Be safe, everyone! 🙂

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How to Talk about Scary Subjects with a Person with Autism

How to Talk about Scary Subjects with People with Autism

Let me say first that I am not one of the people who bought 100 rolls of toilet paper and 50 bottles of hand sanitizer. But, I am one of the people concerned about the virus that seems to be sweeping across the world. (not in a totally paranoid way, but it is affecting us.)

I’ll admit – I was one who kind of laughed at the whole thing when it first started. It was a virus, for Pete’s sake, and it seemed influenza was harder on people. As more information has been shared, my biggest concern has been what to tell Casey and Rob. I am a firm believer that, even if a person with autism doesn’t speak, they DO hear you and what they hear may be scary – especially when they can’t ask questions about what they have heard.

The first hurdle was earlier last week (and really – we should have been more prepared as a week that has a time change, a full moon and Friday the 13th just isn’t going to end well, right? 🙂 ) Anyway, Casey and Rob participate in a track and field event put on by the Kiwanis in our area. Casey loves it – Rob seems to enjoy parts of it, but they both look forward to ribbons and getting a treat on the way home with me. Tuesday, it was cancelled, due to the virus threat. Rob didn’t seem too concerned.

Casey, however, was confused. She was okay with writing “cancel” on her calendar, but she didn’t understand why. I told her that people were getting sick and that Toby didn’t want her to get sick again like she was last month. She seemed to accept that – until she frowned and said “Toby sick.” So she didn’t quite get it, but she understood it was cancelled.

As the week wore on, more details came out and people went crazy in the stores here. I still have no idea why toilet paper was such a hot item – I would think food would be a concern, too? Anyway – the kids heard people talking about getting sick. Rob couldn’t vocalize his concerns and Casey struggled. She wanted to know if people needed a bucket to throw up in. She wanted them to go to Dr. Myers and get pink medicine. She wanted them to drink Sprite. I tried to explain that Dr. Myers couldn’t make everyone well (How dare I suggest such a thing? My kids think he is a miracle worker! 🙂 ).

My preschool closed for three weeks. So far, their day hab is staying open, but I’m not sure whether they should go or not. I need to protect not only them, but the people around them. It’s a tough decision and one I still can’t wrap my thoughts around. For now, they will be going tomorrow. I don’t want to scare them by keeping them home, but I also don’t want anyone to get sick. Especially this group – and my kids can’t tell me if they aren’t feeling well.

I feel for those of you with picky eaters who can’t find the few foods your child will eat. While Rob is picky, there is a wide variety of things he will eat, so that shouldn’t be a problem for us. Please remember other people’s needs as you shop for your family! And the change in routine is very difficult for our people with autism. Prepare for meltdowns. This is not the time to try new things or make huge demands. Everyone will be happier if you just relax and try to look at the bright side.

When it’s time to talk to your children about the virus, think about these tips:

  1. Always tell the truth! You aren’t protecting your child by lying – especially when they are hearing things from other people. You don’t need to share a lot of details – just say that you are staying home for a while to keep from getting sick. Use social stories if you need to.
  2. Be ready for questions and answer them simply. Tell them it’s like a bad cold and that you will be right there with them if they happen to get sick.
  3. Make the change in routine seem exciting! More time for favorite movies! Time to make crafts and read books. Time to play outside. More time for iPads, Legos and model trains. More time for Sesame Street and color by numbers. I know the change in routine will be tough if you need to quarantine – just take a deep breath and know everyone else is in the same boat.
  4. Explain why they have to wash their hands so often – and make a game out of washing them. Let them make bubbles and squish them. Sing goofy songs to make sure they are washing their hands long enough. (I made Casey and Rob use hand sanitizer after we left stores yesterday and to wash their hands as soon as they got home. They thought I was nuts. 🙂 )
  5. Assure them that you have taken precautions and have enough food. (I’ve heard some crazy stories – I’m sure my kids have, too.) Lay those fears to rest. Share everything you have done to keep them safe. Again, even if your child can’t talk, they are hearing and they may be scared. Talk to them!
  6. Don’t let your kids see your stress. Easier said than done, I know, but if they see you are scared, it will scare them more.

I pray this is over quickly and that you all stay healthy. It won’t be easy, but it will be what you make of it. Plan to relax and enjoy the extra time with your child. Put on headphones if they want to watch the same movie for the 1,000th time. 🙂 Right now, my biggest concern is Casey’s birthday coming. I really don’t want to have to tell her we can’t go get McDonald’s for supper or that we can’t get her favorite doughnuts for breakfast that day. 🙁 But – if we have to, we’ll make it through. Stay safe everyone! 🙂

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Autism and Another Perfect Storm

Autism and Another Perfect Storm

Here in Ohio, today is finally a pretty, sunny day! We haven’t had many of these – it’s been gray and raining since November and not even any snow. The beautiful blue sky is helping to raise my spirits, but I’m still feeling anxious. We changed the clocks last night. Tomorrow is the full worm moon. Friday is the 13th. A perfect autism storm! Anyone have a blanket fort I can hide in until Saturday?

Honestly, Friday the 13th doesn’t bother my kids, but when it affects others, they feel it and get stressed. Rob is especially sensitive to the moods of other people. If we could just stay home for the week, we would be much happier. Maybe. Actually, probably not. Rob finally has aquatic therapy tomorrow and I’ve been reminded for the last 5 days that the kids are going with Bob and Reagan after Hopewell tomorrow. (Their time away from each other is going amazing! I’m so happy for them!)

I know they both felt the moon changing yesterday. Casey was quiet, but she had a look on her face. She was on edge and irritable. She kept it together all day and I didn’t ask her to do much. She spent a lot of time vigorously folding her socks and blaring music. She also spent a few hours curled up on the couch under a blanket with her iPad. And that’s okay. Life goes on. Weekends like this are not the time to try new things or make too many demands. The only time she got really irritated was at supper when she wanted to put more salt and pepper in her chili after she watched me do it. I told her no and she kept pushing the limits till I threatened to throw the salt and pepper away. (Yeah – not my finest moment, but she tends to overuse salt and I am limiting it. And I wanted to eat my supper while it was actually still warm for once. 🙁 )

Rob said “Gramma Roses go sit in the house. Grampa Mack go sit in the house!” for almost three hours – loudly. With a deep voice. He was building Lego houses and was on repeat. He did finally stop saying that and moved on to list every menu of every fast food place he could think of (and he knows many – even ones we don’t go to!) I turned the TV up a little louder than usual and let him go. I am happy to report he knows which restaurants have Coke and which only serve Pepsi (I only drink Coke!) But still, by evening, I was really ready for him to talk quieter. After supper, he settled down with his iPad. Yahoooo!

He got up at his usual time today, had breakfast and went back to bed. That’s his usual routine for Sunday and I don’t mess with it. Sometimes, I think the week just wears him out – and I don’t think he always sleeps as well as I think he does. He doesn’t get up and wander the house when he wakes up anymore, so I don’t always know when he’s awake. I heard Casey folding socks, but it’s quiet again. And I’m okay with that.

I’ll be honest. I’m dreading today and tomorrow. We don’t try to adjust meal or bed times when the time change happens. I know some people try to slowly do it, but we don’t. They know when bed time is. So for the next few days, we are all likely to be tired and hungry at weird times. And when we are all tired and hungry, we get irritable with each other. I have less patience – Rob is more anxious – Casey is moody. Anyone want to visit? 🙂

I don’t care what people say about the full moon effects. As the moon gets closer to being full, my kids start acting off. And it takes a few days passed the full moon before they are back to normal. So, basically, a week every month. Some months are worse than others – I’m not sure why, but I do know this month will not be fun. I hate changing the clocks. Ohio has a bill to stop Daylight Savings Time and I’m all for it. If it will help sway politicians, I’m willing to send Casey and Rob to live with them for a week. I guarantee they will stop this nonsense. (Or drink their way through the week! 🙂 )

I found some Easter crafts they can do today and maybe we’ll make some cookies. And a walk. Days like today are for having fun and taking it easy. No demands on any of us, if I can help it. I’ve been told I’m too easy on them, but I seriously do not care what others think. If that person wants to come and take over for a day, I’ll go away and enjoy the quiet. But, really, don’t push things in the next few days. As adults, we may feel the pull of the moon, but laugh it off and push on with our commitments. And when Casey and Rob are agreeable, that’s what we do.

But – it’s not going to hurt anyone to have a relaxing day. I’m feeling anxious just knowing that they will be off today. With an autism house, you never know what feeling off will bring. Loud anxiety? Screams? Meltdowns? The need to be close to someone all day? Deep pressure? No pressure? The same comforting routine or something different to take their mind off of the anxiety? Your guess is as good as mine and it won’t be the same for anyone. Casey would probably love to go somewhere, while Rob would rather hide in his room.

I hope you are one of the lucky ones that has a child who isn’t affected by the full moon or the time chance. But, if you are like me, try to relax. In a few days, this will all be over for another month and maybe the next full moon won’t be any big deal without the time change, too. We can always hope!

Until then, have that glass of wine or eat that cookie or binge watch your favorite show. Give yourself the day to just chill out. When the moon effects are gone is time enough to clean the house or pay bills or anything else that requires too much effort. We all need time to do that and the more relaxed you are, the more relaxed your child will be. So consider this a no-demands Sunday. Make it like a holiday and just enjoy it! Good luck and hugs to all! 🙂 🙂

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Why We Need Other Autism Parents to Talk To

Why We Need Other Autism Parents to Talk To

Last week, I finally had the chance to sit down with another autism mom and talk. We usually try to get the group together, but this was a last minute thing and it was so much fun. We could talk about things that no other person, unless they are an autism parent, understands. Who else would “get” the pain of watching your child wanting a friend so badly and not having one?

Who else understands the “rules” of the house? Or the fear that another meltdown is only seconds away – even when there hasn’t been one in months? Who else worries every time they leave home about sensory issues and a child that will run away as you blink? Or finding a bathroom that your child can use?

I love having these ladies in my life. I may not see them or talk to them often, but I know that one phone call to any of them will make me feel so much better. They understand that sometimes, I just don’t like autism. It isn’t that I don’t like my kids – it’s the autism that drives me crazy at times. No, I wouldn’t change them at all – even typical kids drive parents crazy at times. 🙂

But – I wasn’t always ready for other autism parents. When Casey was first diagnosed, I had my hands full. I didn’t have enough of me to put the effort into friendships that weren’t already established. I did wish I had someone to talk to, but there weren’t other parents around. Things have sure changed in the last 30 years! I also knew that I didn’t have the time to meet other autism parents – and I wasn’t ready to talk about Casey and autism. I needed time to adjust – to figure things out for her.

And then Rob was diagnosed. But, by then, we had all adjusted. We learned (and of course, most of what I learned for Casey didn’t work for Rob! 🙂 ) and I was ready to talk about our journey. I was lucky enough to meet Brandon and his family then. Brandon quickly became one of Rob’s buddies at school and his parents are still close friends of mine.

Adam and his mom came next. And then Riley and his family. And Tyler and his grandparents. And Jalen, Cyrys, Alaina, Ryan…. the list goes on. The point is – it took a long time to build a support circle like I have. First, you have to be ready to talk about private things. Then you have to find other autism parents. It’s not easy. I get messages from people on Facebook that wonder where I am because they don’t have anyone to talk to close to them. I wish it was easier to find the support that is so needed.

By the time I met Brandon and Lillie, I was beginning to understand that the fights that Casey and I went through might help other families avoid some of the same issues. I could talk about it – once I felt like I could trust the person who was asking. I learned quickly who was asking with love and those who were just nosey. I didn’t mind answering questions from people who were curious, but the ones who just wanted to know dirty details were annoying. I might have told a few of them off over the years. Always nicely, of course! 🙂

As Cherie and I talked the other night, she said something about me being some sort of mentor for them as they learned about autism. I had to laugh at the thought that anyone would think that about me. Most days, I still feel like I’m feeling my way in the dark. Not as much as when the kids were little, but autism is always interesting and no one knows when the next “surprise” might decide to pop out. On good days, I’m confident we will handle whatever it throws at us. Other days, I think I’ll just duck and let it fly at someone else! 🙂

When you are ready, look for other autism parents to talk to. It may not be easy to find them, but I urge you to try. If you can’t, ask your child’s teacher about other autism parents or call your county board of developmental disabilities and see if there is a support group in your area. I met so many amazing parents through a support group – even if you don’t say anything, you will feel better just hearing other parents talk about the same issues you may be having.

Autism isn’t easy. Even high functioning people with autism have rough days. You will have rough days, too – days that you just want to scream or sit and cry. It’s great if you have a best friend that is always there to support you, but other autism parents can support you in ways that no one else can. If you can’t find anyone, message me! Even if we can’t talk face to face, I promise to be a listening ear for your good, bad and ugly days! 🙂

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Autism and Quiet Time for Mom

Autism and Quiet Time for Mom

In a few hours, I’ll be heading to camp to pick up Casey and Rob. I dropped them off Friday after supper and they stay until after lunch on Sunday. They were both so excited about going, but to be honest, I tried not to look forward to it until I dropped them off. I kept expecting one of them to be sick again or Rob not to be able to walk.

But, they did go. Ernie got chosen (after several minutes of trying to decide who to take) and Rob packed enough clothes to last several days. He had to run back in the house and get his cowboy hat. 🙂 (he only wears it to camp, now!)

I came home and got to watch Avengers Infinity War again… Quietly. No bath interuptions. No snack interuptions. No long black train… And then I went to bed. Exciting? To you, maybe not. To me…. It was great!

Yesterday, I spent the day doing fun things for me – and even got to take a long walk with Blue! And a long talk with Tracie (uninterrupted!) and the last Avengers movie. (what can I say? I love Hulk, Thor and the others! 🙂 ) and yeah, I had tears at the end – but you know what?? I got to watch the whole movie!! The whole movie! Imagine!! It was great! (I do watch movies, but rarely without interruptions or starting them later at night when all I really want is to go to bed!)

And now I’m going to get ready to go to church with mom and dad and have lunch with them before I go pick up the kids.

Later…. church was wonderful. Lunch was fun and I got to camp early to see them. I had their suitcases in the car before they got up to the building where we have to sign them out. Rob was walking up to it when he saw me and I got a huge grin – and even a hug!! Usually, he doesn’t do that until we are home, but it was amazing to get a tight squeeze when he saw me. Then Casey did the same – a real hug and such a sweet smile. 🙂 They missed me, too!

Rob was a little anxious this time, but who knows why? He was on repeat about fast food places and their menus and couldn’t go to sleep last night. I wish he could tell me what he was thinking, but he just smiles and looks at me. Maybe someday, I’ll know. For now, I can only guess. And guesses won’t help me keep it from bothering him again – whatever it was. I’m so thankful that camp staff weren’t upset at all – I hope they know how much that means to me. It isn’t easy knowing that he was singing late at night and bothering other people. It’s a worry for me every time he goes.

They are both happily in their routines now. Ipads are on – Lego trees are being built. Her foot is swinging to music as she asks about Mandy’s birthday tomorrow. And I’m happy they are home. I enjoyed the break – I’ll admit that, but I still feel more like me when they are home. I do look forward to the next time (and Casey has already told me they are going to the zoo!) and I think they are, too. They love camp and the friends they have there. Casey was a little surprised to tell me that one friend had a baby (Lauren is a volunteer that hasn’t been there for a while, but she brought her baby with her this time. 🙂 ) and that Logan’s daddy is Donald. (Again, I have no idea why she didn’t realize Emily and Donald were married – or if she even cared. But somehow, she realized that Donald is Logan’s daddy and she just giggles and giggles about that. 🙂 )

I know that not everyone is as lucky as we are to have a camp so close to us. I wish more people had services like this – and that more people who do live close took advantage of it. It was hard for me the first time. Not just leaving them with people who were mostly strangers, but just to admit that I wanted and needed a break was terribly hard. I’m always told how strong I am. I feel like I let people down if I admit I need a break from autism. (I know it’s silly to feel this way – but it happens.)

So – take all breaks you are offered. Enjoy every quiet minute you can get. These quiet minutes recharge your spirit which makes it easier to handle everything life with autism throws at you. Push the guilt away and enjoy being just you. Enjoy the quiet without guilt. Enjoy eating a meal without “help.” And enjoy the smiles and hugs when you see them again. 🙂

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Autism and Horseback Riding Therapy

Autism and Horseback Riding Therapy

For more than ten years, Casey and Rob took horseback riding therapy to help with their autism. Honestly, I doubted Casey would even get on the horse as she was terrified of most animals at that time. I knew Rob would jump on (and prayed he wouldn’t jump off – he was still in full dare devil mode when they started!) with no problem.

I talked to the couple who ran the program and was told to bring them both up and see what happens. It has been proven that just spending time with the horses eases anxiety and gives the person a sense of calm and self – confidence. Imagine my shock when Casey climbed onto her horse without a second thought! They both had to wear helmets as they rode and again, I thought that might be a problem, but their excitement was greater than their sensory issues and the helmets were no problem.

Volunteers walk beside the horse (or one on each side, depending on the rider’s ability and strength to stay safe in the saddle) and another leads the horse. Once the rider becomes more advanced, they may choose to guide their horse themselves. Casey and Rob just wanted to ride and showed no interest in guiding their horse. At first, they just rode around the ring and enjoyed the experience. Their smiles and giggles were amazing!

After they got used to riding, they started the riding “therapy” part for them. For some, just being on the horse is enough – it strengthens the core and relaxes taut muscles. For others, taking care of the horse, such as brushing and feeding were what they needed. (Casey and Rob did brush their horses, at times, but rarely fed – I think they were intimidated by the teeth! 🙂 ) Their riding therapy was actually a series of games to be done on horseback.

They shot basketballs, threw bean bags, tossed rings and stretched up to ring bells or put rings on hooks. All of this just sounds like fun, doesn’t it? But really, it required a lot of effort for them. They learned to shoot baskets from each side of the basketball pole and in front of it, with right hand, left hand and both hands. They learned which hand was right and which was left. (I am still amazed at how quickly they learned this on the horse but still can’t do it standing in the house!) They had to stretch and cross over mid-line (something that is really hard for some people with autism to do!) to shoot the baskets from different angles. And they were good at it. Rob could nail those baskets without really looking and took all of the praise in stride.

For the bean bag toss, the board had different shapes got out and the hole for each shape was a different color. They had to listen to instructions to hear which color or shape to throw the bean bag into. It really does sound simple, but for people with language processing problems, it’s a difficult thing. They had to think about holding onto the horse, listen for which hand to hold the bean bag in and then which hole to toss at. Then the physical part – to get their minds to follow each step of holding on, holding it in the specific hand and then aim at the shape. And not lose their balance when they threw the bean bag. It takes a lot of work – and they loved it!

I also learned that while on horseback, it was easier for them to communicate. As we walked, we practiced their addresses and phone numbers. We did math problems and spelling words. We named the months of the year and days of the week. I am not saying they talked as you and I do, but they could answer simple questions with less of a struggle. Rob liked to name states, so we did that. Anything I could think of, we did.

When she was 3 or so, my niece, who has cerebral palsy, also joined our group. For her, we had a special belt she wore and there were people walking on both sides to hold her. It helped relax her muscles and also start to build that core strength she needed. Honestly, I can’t think of any disability that riding therapy wouldn’t help in some way. Our group had traumatic brain injuries, autism, CP, spina bifida, stroke victims and many others. Some came in wheelchairs and we lifted them onto the horse and held them much like we did my niece. The smiles – the laughs….. it still brings me joy to think about it.

During nice weather, we rode outside in the yard. We had costume parties at Halloween and graduation parties in the spring. Beyond the therapeutic benefits for Casey and Rob, there were social benefits, too, that were just as important. When we went to therapy, it didn’t matter if Casey looked at socks or Rob squealed. They fit right in with the group and I had a chance to make new friends, too. And, come fair time (our county fair is a big event in our town and many kids participate in one way or another), our group was part of the horse show! The kids got to show off what they had been working on and got trophies in front of the crowd, just like everyone else.

After many years, I noticed that Casey and Rob didn’t seem to care as much whether we went to therapy or not. Casey was going as much for having a snack as anything else and Rob was getting loud as he rode. It was also hard to find someone to go with me (I needed someone to walk beside each of them) and I had developed a terrible allergy to horses. Nothing I took helped and I had a hard time driving home after a few sessions, due to major allergy attacks. I made the tough decision to take a break from it and see if they really missed it.

While Casey did ask about it, I knew it was more because it was her schedule than she really wanted to go. They went two times a month for 12 years (we took winters off) and the results were amazing! I wish every family had an opportunity to try this with their loved one with autism or other special needs. There are so many benefits and it affects everyone differently. Unfortunately, finding horseback riding therapy isn’t easy, but if you have a chance to try it, I highly recommend it. You never know what will happen until you try!

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Autism and Illness – The Sound of Silence

Autism and Illness - The Sound of Silence

Let me say… I’m always ready for a few minutes of quiet – no long black train, no stomping up the stairs, no music blaring, no long repetitive sequences of words. In the last week, I’ve gotten lots of quiet moments and have been worried to death.

Last Sunday, my mom gut told me Rob wasn’t feeling right. I couldn’t pinpoint what was wrong, as he was eating and drinking like usual. No rubbing his ears. But, I knew something was going on. By late afternoon, he had a fever. By mid evening, his fever was over 103 and he still couldn’t tell me what hurt.

So I went into panic mode. I gave him ibuprofen, popsicles and cool rags for his head (which he hated and threw off as soon as I turned my back!). I talked to mom and Mandy and cancelled our plans for Monday. And I tried to decide whether to take him to the emergency room. (he had a seizure when he was little from a high fever – I’ve always been terrified it would happen again.) I paced from his room to the living room where Casey was on repeat “Robbie’s sick. Robbie’s sick. Robbie’s sick.” I took a chance and asked her if she knew what hurt Rob. Then she started coughing, but not too much.

His fever wasn’t coming down, so I put him in the shower. I was surprised he got in as I knew how bad he was feeling. I said again “Tell me what hurts.” No response. “Show me what hurts.” Nothing. Just a completely miserable looking young man.

His fever came down to 101 after the shower. He ate his snack, took his pills and went to bed. Casey kept telling me she was going with Regan to Odd Lots and to get a frosty Monday. And she coughed.

By Monday morning, you guessed it – they were both sick. I called the doctor and said I thought he had an ear infection and she had a sinus infection. We had an appointment quickly.

The nurse practitioner took one look and said she wanted to swab them for influenza. I laughed as there was no way either of them would let anyone put anything up their nose. As proof how bad he felt, Rob never moved when the nurse swabbed his nose. Casey jerked away, but the nurse did manage to get a swab.

In ten minutes, we knew. Influenza A for him. Hers was negative, but the nurse said she was sure she had it, too, but in the earlier stage than him. My busy planned week came to a stand still. They were both contagious. I wondered when I would get it.

They slept all day Monday, through the night and into Tuesday. Rob would eat and drink, but she refused. By Tuesday evening, his fever was 103 again and she was in danger of getting dehydrated. I wondered if the hospital would put them in the same room as I paced from one room to the other. (yeah – I know, but I was tired and stressed and thinking worse case scenario).

I’ll admit it. I really didn’t like autism for a few days. I needed to know what hurt, what I could do to help them feel better and thanks to autism, they couldn’t tell me. I knew I needed to watch him for an ear infection and both of them for pneumonia. She was still coughing. He rubbed at his ears. And I paced and worried and mumbled not nice things about autism under my breath.

Before anyone gets a burr under their saddle, I’m not saying I was upset at kids at all. I just got irritated at autism – it was preventing me from helping my kids and I was feeling so helpless. I hate that feeling. I sat and wished he would long black train. I wished she would stomp up the stairs. I wished the quiet would go away. (That proves how stressed I was – to wish for hours of long black train! 🙂 ).

Thank God, both their fevers finally came down late Tuesday and Casey even took a few sips of juice. They slept off and on all day Wednesday and Thursday. We even had a snow day Friday so I didn’t have to miss any more school.

Casey is talking about going with Regan Monday and riding the shuttle to Hopewell. Rob hasn’t said a word. I just keep hoping they are on the mend. They are both sleeping more than usual and aren’t talking much. Eating is still hit or miss and their coughs sound nasty. It isn’t a constant cough, but it hurts me to hear it.

He finally mentioned Hopewell this morning. I asked if he wanted to go or stay home with Mommy again. He said Hopewell, but then coughed again. The doctor said it would be probably a week before they started feeling like themselves and that secondary infections were a concern, especially since autism prevents both of them from telling me that anything hurts. Today is a week.

I wish I knew how they really felt. They are moving around so I guess tomorrow we’ll try to get back to our normal and let them go. They were both upset last week that they didn’t get to go with Bob and Regan after Hopewell and Rob missed his aquatic therapy. Thankfully, the hospital rescheduled him for tomorrow. I just have a feeling that they will both be exhausted by tomorrow evening. Unless their fevers come back, they will go. And I’ll keep my phone close by in case they need to come home early.

Last week just proves again to be careful what you wish for. I often wish for a few minutes of quiet, but when I got it, I couldn’t enjoy it. I hate it when any of my kids are sick, but at least Mandy can tell me what hurts and if she needs to see the doctor. With autism, it’s just a guessing game and while I’ll admit I’ve gotten pretty good at guessing, I don’t like it. I want to help them feel better, not wonder if I’m doing the right thing.

We’ll see tomorrow afternoon if I guessed right about sending them back to Hopewell. I hope I am. I wish they would just say they are too tired to go. Or that they ache. Or that their head or chest hurts. Maybe some day they will – Rob will tell me at times when his ear hurts and he needs to see the doctor. Small steps. And I’m proud of every little step they have taken.

Stay well! Disinfect. Wash your hands. Avoid people and stay home! 🙂 🙂

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Autism – Why are You Sorry?

Autism - Why are you Sorry?

A few days ago, I was at an event doing a story and three different people asked if I had kids and how old they were. I told them that I had 3 – all adults and that two had autism. And it was like a light was flipped off. The “Oh I’m so Sorry” pitiful look came across their faces and I seriously wanted to smack them all. Why in the world would they be sorry for my amazing kids?

I understand that when people don’t know what to say, “I’m sorry” is an easy go-to phrase, but really, it’s annoying. I’m not sorry for my kids and they wouldn’t want anyone’s pity (unless it was possible that along with the pity came some French fries! 🙂 ) They are amazing, just the way they are. I am one proud as heck mama and they know it. We have all worked darn hard to get where we are – and we don’t need anyone’s pity because of that.

The truth is – maybe I feel sorry for the parents who lose childhood magic in their home when their kids grow up. I can’t imagine how boring holidays would be without the magic of Santa coming – the eyes that twinkle and the giggles at the very thought of his visit. How boring Halloween would be without the difficult decision of what costume to wear and what candy to hope for? What about an Easter basket that magically gets filled by a giant bunny while they are asleep?

The parents that feel sorry for me don’t get to experience the pure joy that a waterfall can bring or how a long hike in the woods can be a journey worthy of a novel. They don’t see the excitement that a new box of crayons can still bring and can’t hear the giggles that Elmo can cause. Their children will grow into adults that worry about jobs and houses and bills. My children grew up to see joy in the world.

It’s not that they are always happy. We all have days that the world is a tough place, but we work through it together. I’m still one of the people that they completely believe in. They will never outgrow wanting to spend time with me (though they both love going places without me, too! 🙂 ). I’m one of the few people they completely trust. Why feel sorry for me about that?

Yes, we may have different challenges than other people, but that doesn’t mean our challenges are tougher to live with at all. It means that we adapt – we change – we do what we need to do. Just like every other parent in the world. Every family has its own unique challenges that others can’t understand. That doesn’t mean we need or want your pity.

Instead of pity, why not ask how the kids are doing? Ask if they are happy or what they enjoy doing. Ask about them – just like you would if you were talking to any other parent. Save your pity for when we can’t see it, because I’ll be honest… some days, some exhausting, rough days.. when I see that pity, it just makes me want to cry. And I don’t need that. I would much rather tell you where Casey volunteered this week or that Rob tried another new food.

I would much rather tell you that Rob doesn’t need to rip magazines all the time so his anxiety must be under control. I’d love to tell you how Casey loves to sing and can’t wait to be in the talent show again this spring. Or I could tell you about the Lego designs Rob builds or the things Casey paints. Fun things are so much easier to talk about. I’ll listen to you brag about your children and I’ll brag about mine.

Save your pity for someone who may really need it. Or, instead of feeling sad for us, get to know us and be our friend. We can always use new friends! Ask questions. Smile. say hi to Casey and Rob. They truly aren’t scary (I always laugh when people ask how dangerous they can be when upset. What can I say? I have an odd sense of humor at times! 🙂 ) Just because they have heard of someone with severe behaviors, they often assume every person with autism has those behaviors. Cause, you know, everyone is exactly alike, autism or not. Ugh.

So, if you are reading this blog just because you are interested, remember to save your pity. Be our friend. 🙂 If you are a person who see that pity face, remember people don’t know what to say at times, so don’t smack them. 🙂 Instead, brag about your children, just like I do! 🙂