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. 🙂

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!

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! 🙂 🙂

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! 🙂