Tag: autism parents

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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 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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How to Find a Safe Place for your Adult with Autism

How to Find a Safe Place for Your Adult with Autism

One thing I hear over and over again is what to do with an adult with autism during the day. As parents, we know our kids do not want to spend every waking moment with us. Even those who are severely affected need some diversion in their lives. And even if they don’t need a break from us, we definitely need a break from being a parent at times. I know that’s hard to admit, but saying you need a break doesn’t mean you don’t love your child more than anything in the world. It simply means you need to breathe.

As I’ve shared before, we are lucky. We have the services the kids need here in our small town. Yes, I wish there was more to do, but that’s the trade off for living in the town we all love. We had speech therapy, OT, equine and even aquatic therapy. They have a place they love to go to every day. It wasn’t always easy, though.

Many years ago, our county board of developmental disabilities had a sheltered workshop. Casey started going once a week during the second semester of her sophomore year. She loved it and continued doing that her junior year. Her senior year, she went to school Monday, Wednesday and Friday and the workshop on Tuesday and Thursday the first semester and switched days the second semester. The week after she graduated, she went to Hopewell every day.

Rob was already familiar with the workshop, so he didn’t start going until his junior year. Again, he went to Hopewell often throughout his Senior year.

Because I worked for the school that the county board has, I knew most of the people who worked at the workshop and, though I was nervous that no one would like the kids, I was comfortable that they would be safe.

Unfortunately, a few years later, their day hab was privatized. Honestly, I was terrified. Many of the people I knew would be leaving and I was worried that anyone that worked there wouldn’t be there because they had a passion for helping others but because it was a job. Or, worse yet, they wanted “control” over people who couldn’t fight back or tell on them.

Thankfully, Rob’s favorite person stayed (If you ask him about friends, he will say “Bob is my friend.” 🙂 ) and Casey seemed okay with new people. But – I was still nervous and we’ve had some bumps. I’ll be the first to admit, some of the bumps were caused by my lack of sleep and the fact that I get angry and over react when that happens. And sometimes, I’m just so sick of dealing with stuff, that I yell over little things. (I always try to go back and apologize to people – I truly don’t mean it often, but sometimes, everything seems to be too much and I lose it. 🙁 )

So – if you are looking for a safe place for your adult, here are a few tips I’ve learned.

  1. Visit without your adult. Just sat back and watch what’s going on. Is the staff interacting with everyone? Are the attendees actively involved in their day? Is it clean? Accessible for everyone? Talk to administration and ask all of your questions. I promise you – they have heard them all before. If they truly want to get to know your adult, they will be happy to answer anything. Ask about staff ratios. Ask about daily routines. Share your concerns about your adult and see how they react. I told staff that Casey could have terrible screaming meltdowns and watched their eyes to see their true thoughts.
  2. Talk to families with adults in the day hab. While administration may not be able to give you that information, you can ask if they would contact families and give them your contact info. Talk to people who go there and see what they think.
  3. Take your adult for a visit. See how staff interacts with him/her. Show them how you communicate with your child and see if they will try. Again, share any concerns you have. Sensory issues, behavior problems, dietary concerns. You need to be completely honest with the staff if you expect them to be honest with you. Ask hard questions and take notes.
  4. Once you decide where to try, take your adult the first time. Be there as a comfort if they need (Casey and Rob had a aide go with them – they never seemed to want me around! 🙂 ) and leave if they want you to go. Keep an eye on your child the next few weeks and see if you notice any new behaviors that could be telling you they are not happy there or are scared or anxious. If you see anything odd, go talk to the day hab.
  5. Drop in for visits. If you are told you are not welcome to stop in, do not even think about letting your child stay there. Stop by unannounced and see what’s happening. See if your child seems to be interacting and happy.
  6. When there is a problem, immediately talk to administration. Don’t wait and see if it gets better. (I do wait if Rob seems anxious, as he does get worked up about things they have no control over). Ask staff to contact you if they notice anything off about your child. Trust is a two way street!
  7. Make friends with the staff. No one wins if you try to be superior or a witch about your child. No matter what you think, your child isn’t perfect and staff needs to feel comfortable calling you over little issues or they won’t communicate when there are big problems. Always, always, always keep communication open! I can’t stress that enough. I’ll even venture to say that the staff at Hopewell wishes I didn’t communicate as much! 🙂 But, I feel better knowing that they have all the info they may need, whether it’s that my parents are picking up the kids that day or that one of them didn’t sleep well the night before.
  8. If they have family events, go to them. Hopewell has a Thanksgiving lunch and it’s so much fun to see old friends and meet new ones. Parenting a special needs child can be lonely. Sometimes, it’s even lonelier when they become adults as you don’t have school activities to meet other parents, anymore. You need support from others who understand your life.

A word of caution. When you are asking for recommendations, you will hear positive and negative about every place you visit. For each glowing report you hear, you will hear a horror story. Take both with a grain of salt and make your own judgments. When you decide on a place for your child, visit often. Make yourself available to staff. Just remember to follow your own gut – you will know what is best.

Unfortunately, there is no way, barring keeping your adult with you every minute, to be 100% positive of their safety. If you feel uncomfortable around a person or a place, listen to your feelings. I wish there was a guaranteed way to always make sure they are with people who love and respect them – I wish that every day. I look at strangers with suspicious eyes. I hate to admit it, but I often look at new staff the same way. Until I know you well, you are a possible danger to my children. Please don’t take offense. I simply love them more than I care about your feelings. I have to be sure they are as safe as I can possibly make sure of.

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You are an Amazing Autism Parent

You are an Amazing Autism Parent

That probably sounds like an odd title to a post, but I wanted you to know it. I have no idea what your life is like, but I know enough to know you are tired, stressed, maybe lonely, certainly worried and an amazing autism parent.

Like most people, last week was our first week back into our usual routine and it seemed like it was a month long. Rob was happy to be back to normal, Casey not so much. I went to wake her up one morning, and she said “no, snow day!” 🙂 As much as I wanted to crawl back in bed, too, I laughed and told her to get up. Not long after she got up, a memory popped up on Facebook reminding me that one year ago, we were all home because of a huge snow storm. How I wish I had her memory! (on a side note, it was almost 70 here yesterday!)

The first week back with a full moon and crazy weather at the end. Imagine my excitement! Casey wouldn’t sleep Monday, Rob was up and down all night Tuesday, she didn’t want to sleep Wednesday and he had a terrible time going to sleep Thursday. Yayyy full moon! Thank God, they both crashed Friday and slept last night, too, cause I was tired. Like crying over little things exhausted. (yep – crying meltdown yesterday morning – sorry, Dad!) So – there – for those who message me and tell me I have an easy life with autism… some days, yes, I do. Others, nope, not so much.

So this brings me to my point. I see you. I know you have days when you are crying in the shower (if you have time for a shower!) so no one knows, especially your child. Because you never want your child to think they are the reason for your tears. Or so no one knows that the “strong” person broke. I see you. I get it. I’ve cried in the shower more times than I hope to ever remember.

I know you are so tired that simple things like what to make for supper are more than you think you can handle. There were weeks when Saturday supper was frozen pizza for Rob and me and ravioli for Casey because I knew they would both eat and I didn’t have to think about it. Healthy? Nope… but, sometimes, you gotta do what you gotta do. They were happy and so was I. 🙂

I know that beyond not getting much sleep, you are tired of fighting for services for your child. You are tired of phone calls from the school. You are tired of therapies, doctors, insurance. You are tired of trying to figure out how to pay bills. You are tired of making the same food, washing the same clothes and watching the same TV shows or movies. You are just tired of it all.

But, here’s what else I know. You are doing an awesome job! You may not think it. You may not believe me. That’s okay. I know you are. I know that your child’s eyes light up when they see you. I know you wonder if your child loves you or even cares if you are around. Yes – they do. I promise you that. Your child may never say a word, but they love you. They need you – the imperfect, exhausted you. Just like you need them.

I know that you put yourself last. That all of your energy goes into taking care of your family and home before you think about yourself. I also know that you can’t do that very long. You have to think about yourself or you won’t be able to take care of them. Trust me – I know it’s hard to think of yourself, of spending time doing something just for you. But, if you don’t, you won’t be able to take care of them. I learned that the hard way – I speak from experience. 🙂

I know that you question every decision you make for your child. I know you are lonely and feel forgotten by friends, at times. I know your family may not be as supportive as you want. I know you may have had to limit the time your child spends with some family and that you hurt over that.

But really – for all of you that needs to hear this. You are an amazing autism parent! Every day, you get up and you do the very best you can for your child. You love that child more than you ever thought it was possible to love anyone. You brag about their little steps forward. You try every thing you hear about that may help your child. You do research better than a detective. You ask questions and reach out to other parents who may be able to help you. You are stronger than you think!

Always remember – from one autism parent to another – you are doing a wonderful job! You may not always believe it, but I have faith in you. Be as proud of yourself as you are of your child. Brag about yourself, too. You got this!

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Autism and End of the Year Thoughts

Autism and End of Year Thoughts

Happy New Year! As Casey has been reminding me since Thursday, “Tuesday, December is all done.” Yes, Casey. “Wednesday is January” Yes, Casey. “Tuesday, 2019 is all done!” Yes, Casey. “Wednesday 2020” Yes, Casey. Over and over and over. 🙂 Is it just me or does 2020 seem like it should be a futuristic movie setting? It sure makes the 1999 seem like a million years ago. To me, anyway.

I hope each of you had a wonderful Christmas. Ours went as planned and expected which is always good. The only thing that was odd was the terrible fog we had on Christmas Eve. It lasted all day and through the night. Our drive to look at Christmas lights was severely shortened because we simply couldn’t see the lights on the houses (and honestly, it was terrible driving!). Casey seemed to be getting agitated after her bath, which is odd for her on Christmas Eve.

Until she was finally able to tell me it was foggy. I agreed but told her we were safe at home and so were Mandy and Cory. Then she mentioned Rudolph! I got it! I had to laugh and tell her I was sure that Rudolph would be able to help Santa that night – she didn’t need to worry. She giggled and went to bed. And went to bed again about 30 minutes later. And 45 minutes later. And 15 minutes later. Finally, at 12:30, I told her she had to stay in bed so I could go to bed and then Santa would come. I tucked her in, Santa came, and I heard her on the steps again.

I saw a light flash on, turn off and her running back to bed. I had to wake them both up at 9 the next morning to open their gifts. Apparently, she could only sleep once she knew he had actually made it! 🙂

Now that the excitement of Christmas is somewhat over, she is talking about New Year’s Eve. We are trying something different this year. Mandy and Cory are having a party at their house. This will be the first time Casey and Rob have ever gone anywhere on New Year’s Eve and I’m wondering how it will go. When we stay home, they take baths as usual, even with company here, eat snacks and go to bed. I think she stayed up one time, but they really could care less.

I’m going to make sure they have their bath/shower before we go to Mandy’s so they can just go to bed when we get home. I really, really doubt we stay until midnight, but you never know! They both constantly surprise me and this could be another of those times. Honestly, once Rob decides he is ready for sleep, that’s it. He may be sleeping at their house! 🙂

I just asked Casey what she would like to do in 2020. She wants to go to Walmart and McDonald’s (she got gifts cards for both for Christmas), go to the Cincinnati Zoo (and told me we went in June 1993 – which we did!) go to a hotel and go with Tracie. She doesn’t worry about losing weight, earning more, doing more…. blah blah. She is only concerned with fun things – and how I wish to be more like her!

I have things I want to accomplish in 2020. But when I looked at my list, I hadn’t written fun things. Who wants to accomplish only boring things? Where is the motivation? So I tossed my list away. I do want to write more, as that is fun to me. I am going to walk in the rain. I’m going to read more. I’m going to craft more and spend more time with my friends. I’m going to spend more time playing with Blue and laughing at the birds in my back yard.

Rob’s list is to go to Mandy and Cory’s house, go to Grandma and Grandpa’s house and go swimming with Tracie. Again, fun things. We all need to take a lesson from our kids.

I bet if you could ask your child with autism what they wanted, it wouldn’t be to lose weight or work more hours. It would be to enjoy the spinning lights of their favorite toy or to swing higher than anyone thinks is safe. It will be to stand under pouring water or sit by a waterfall. It would be to lay under heavy blankets and to squeeze play doh. It would be to throw away all of the “yucky” food and uncomfortable clothes. It would be to watch favorite movies and listen to favorite music.

We have so much stress in our lives that adding New Year’s resolutions is just crazy. For your resolutions, learn from your child. Choose fun over boring. Decide what would make you happy and go for that. Seriously, your life is stressful enough without adding more pressure to be perfect. Choose grace to be imperfect over the guilt of perfection.

You will never be stress free. Our lives are just simply different and everyone has a different kind of stress. Dealing with doctors, insurance, schools and therapist every day takes a huge toll on you. Trust me – been there, done that. Luckily, that’s not happening as much these days and I thank God for that.

So this year, resolve to do something for you! It doesn’t have to be a big thing – just something that makes you happy. A few minutes of happiness each day can change your whole attitude and we all need that.

Happy New Year from our circus to you. May you all have a safe and happy holiday!

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Autism and Colorful Traditions

Autism and Colorful Traditions

The house is decorated. A cookie baking day is planned. Most of the shopping is done and I’m in the process of making my Christmas cards. It’s time to sit back, relax and enjoy the pretty tree lights. And, time to think about how autism makes our Christmas different – and to celebrate those differences!

I saw pictures this morning of my cousin, Judy’s, house. It’s absolutely beautiful. Everything is coordinated and perfectly laid out. It’s the Christmas home of my dreams. I saw pictures that another friend had posted on Facebook of two beautiful trees. (By the way, I want to see both houses in person! So beautiful!)

I’m not saying our trees aren’t beautiful, because they are – to us. I decided this year to do both trees in the dining room bright colored and keep all the decorations in there the same. It mostly worked out that way – until Casey insisted that I change the table runner because she wanted our usual place mats. It’s not a big deal, but… It’s not what I wanted. 🙂

Casey and Rob like the house to be decorated the same every year. Some things can change, but others can’t. The picture with this post shows one thing that Rob insists on. Many, many years ago, he got this Teenage Mutant Ninja Turtle in a McDonald’s happy meal and decided that Baby Jesus needed a very special guard. Every year since then, there’s the turtle. This year, when I put the nativity out, I tucked the turtle in the stable (cause – hey – he’s still guarding the baby, right??). Yeah…. nope. As soon as Rob saw the nativity without the turtle, he started rocking and knocked poor Joseph over in his hurry to rescue the turtle and place him properly. And he checks every time he walks by to be sure I didn’t hide him again.

Casey has already started checking things off in her mind that have to be done as part of Christmas. She attended a performance of The Nutcracker yesterday with my mom and dad. My niece, Anna, was the Snow Queen (and other parts) and Casey said she was pretty and she danced fast. 🙂 And that she went to Steak and Shake for supper. We went to the Christmas parade and waved to Santa.

Casey will start reminding me she needs to go shopping and that we need to go somewhere to look at lights and we need to go to a dance and wrap presents and… The list goes on. Rob enjoys those things, too, but he takes it as it comes. He’s not pushy. 🙂

The tree in Casey’s room is all blue and purple ornaments, plus a few that she made or received (I have no idea what the criteria is for an ornament to be allowed on that tree – I tried to give her more and she strongly said NO!) Rob’s tree still has the unbreakable satin ornaments that he has used since he was a little boy. I found the cutest ornaments for him, but he refused them. Even his Wizard of Oz ornaments can’t be on that tree. (frankly, that little tree has seen better days, but when I brought a new tree in for him to use, he ran to the basement to get “his” tree.) It’s a sad little tree, but he is so happy with it! And that’s truly all that matters.

Our Christmas CDs are in the car (Toby Keith and Alabama are their preferred ones) and Casey will remind me when we leave later that it’s December and time for that music. (She has also reminded me 8 – 10 times that today is Tracie’s birthday! 🙂 ) She has Christmas sweatshirts ready to wear all month (but not on Christmas Day… she often has socks for a different holiday on that day, too! :0 ).

The presents they want from Santa are different than most people would imagine, but that’s okay. Santa knows what they really want. Please be careful when you talk about Santa around people with special needs. Casey is an adult, but she still believes in him. I am always very careful and if someone says something, I always make up a story so that belief isn’t ruined. Rob will talk about Santa, but he always has this look when he does. I’m not sure he believes, but he won’t ruin it for Casey. (We saw the Easter Bunny in the mall last spring. She ran up to him and swayed back and forth as she smiled. Rob looked at me and said “man” and grinned.)

Rob will find index cards and playing cards under the tree and a huge box of crayons. Casey will be the proud keeper of yet another Grover, Big Bird, Ernie and Bert. There won’t be any fancy gadgets or expensive clothes. There won’t be gift cards or jewelry. There will be coloring books, Legos, signs, Sesame Street DVDs and other toys. There won’t be many smiles, as both of them are very serious Christmas morning. The happy giggles come later and that’s okay, too. I know they are happy, even if they can’t tell me. Christmas magic is truly the best!

We may do Christmas differently, but that doesn’t change the love and magic of the season! We don’t go to a lot of parties. We don’t run ourselves ragged trying to do it all. We don’t spend more than we have to impress others. We spend lots of evenings in a dark living room with just the tree lights on and watching Christmas cartoons or movies. (Home Alone is their favorite!) We don’t overeat and we try to keep the same schedule as always. We all function better when our schedule stays close to usual. And we are happier with plenty of sleep! 🙂

Please, try to keep your routine as normal as possible. Your child (and you, I’m betting!) needs this. When you do attend an event, plan for what your child needs and don’t worry about what anyone else thinks. Start your own Christmas traditions and let go of what you imagine Christmas is supposed to look like. Decorate with Ninja Turtles and mixed up colors. Wear Halloween socks and Easter shirts (yep – that happened one year!). Include your child in whatever they are interested in but don’t take it personally if they don’t care about baking perfect cookies or wrapping the presents in matching paper.

Your child will enjoy Christmas on his or her own terms. You can’t make them enjoy the same things you do (do you enjoy everything everyone else does??). Let your child join in where they are comfortable and follow their lead for your traditions. You will all have a more relaxed and memorable Christmas!

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Autism and a Less Stressful, Fun Holiday Season

Autism and a Less Stressful, Fun Holiday Season

As I write this, Rob is repeating his “song” over and over. He has been at it for more than three hours so far with no end in sight. He didn’t feel well yesterday (he said his belly hurt, but also his throat 🙁 ) and I don’t know if he still doesn’t feel like himself or if he is just talking. I am fighting a cold and yesterday, Casey had a meltdown because she couldn’t find the shirt she wanted to wear. (She has decided that she will only wear a certain shirt on the weekends.) I’m feeling a little stressed without even thinking about the quickly approaching holidays.

I know you all feel it. The every day stress that comes from real life – without holidays! Illness, bills, jobs and the roller coaster of autism can cause anyone to want to scream, cry or just take a nap. (I’m feeling all three right now! 🙂 )

Here are my tips for a less stressful holiday. (You can do it! Honestly – I don’t stress about holidays – I love every minute. But – I have a very loving, close family and group of friends that love my kids just the way they are. It’s easier for me. 🙂 )

  1. Let go of the vision of a perfect holiday. A perfect holiday isn’t everyone sitting down at a table decorated with coordinating dinnerware and a perfectly cooked meal. It’s loud and loving and lots of laughing. Your perfect holiday won’t look like mine – and that’s great! My Thanksgiving will be a long walk in the morning, a long shower, a nap, reading and then supper with all of my kids, my brother and his family and my parents. (With a HUGE helping of my mom’s stuffing! 🙂 ) It will be Rob sitting at the island in their kitchen in “his” spot. Casey will sit in the dining room with the rest of us, but she won’t stay long. And that’s okay. They come and go as they need. Please, let your children do the same. Don’t let anyone tell you that they have to sit and visit with the group.
  2. Take food for your kids. If your child only eats certain foods, take it with you. Anyone who gets upset because you are doing this isn’t worth your time to explain sensory issues. Ignore them and enjoy your own meal. If it will be that big of a deal, host the party at your house where your child is happiest.
  3. Bring their comfort things. If your child needs headphones to block noise, bring them. If they need a comfort item, such as a blanket, bring it. You will have more fun if your child is relaxed. Again, ignore any comments.
  4. Make your own traditions. The traditions that we have won’t be like yours, but they make us happy. Do whatever makes your child/family happy. If you want to eat hamburgers and fries for a holiday dinner, do it. Make your own version of an Advent calendar. (We made paper chains and the kids got to rip off a link every day – it was a very visual reminder to when Santa was coming!) If skipping the huge meal on Thanksgiving would make your family happier, then skip it. Order a pizza and watch TV.
  5. Don’t stress about shopping! Don’t listen to the people who say your child is too “old” for toys or someone who says playing cards aren’t a real gift. Yes – they are, if that’s what the person loves. Casey and Rob are both getting toys and some odd gifts. I don’t care – they will be happy and excited on Christmas morning and I don’t have to stress over it.
  6. Rest!!! Yes – I said it. Stop trying to make your house picture perfect. Stop trying to wrap your gifts as if they were art projects. Stop making a million desserts that you don’t need. When your child sits down – you sit down, too. Sleep when your child does (and rest when they aren’t sleeping!) You can handle stress easier when you aren’t exhausted, too.
  7. Exercise! If you can’t get outside, make laps in your home. Anything to get you up and moving will help with stress. Dance around the kitchen while you cook. Whatever it takes to get moving. You will feel better.
  8. Avoid people who won’t accept your child. Yes – I said it and I mean it. If someone makes comments to you or your child or are just negative, stay away from them. You don’t owe anyone a visit or a meal. I don’t care if it is the holiday season – toxic people are not worth adding stress and pain to your life. Protect your child and yourself and stay away. It’s simply not worth it. Your most important job is to protect your child.

I’m sure some of you are thinking I make it sound too easy. I don’t mean that – it won’t be easy to avoid people or to deal with negative comments. You just have to think of your child and yourself first. Remember – those who judge don’t matter and those that matter don’t judge. (Thanks, Dr. Seuss! 🙂 )

I took the kids to the Christmas parade Friday night to officially start our holiday season. I was a little concerned about Rob as parades aren’t usually his thing, but he laughed and giggled through the whole thing. Casey was so excited to see Elmo, Cookie Monster and Santa – and he waved to her! She was bouncing in her seat! Happy holiday season to all! Eat, drink, rest and enjoy!

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Autism and the Non-Compliant Child

Autism and the Non-Compliant Child

I was asked a few days ago what I would do if teachers or staff tried to force Casey and Rob to always be compliant. Okay, first of all – who is going to force me to always do what others think I should? 🙂 But, seriously, it is an issue that is running rampant in schools and care facilities. What to do about the person who won’t do what staff wants them to do? And then, what to do with the staff that try to force compliance on a person? (apparently, my first thought of smacking them in the head is NOT a good option! 🙂 ).

I do understand the need for a certain amount of compliance, especially for safety reasons. Children need to learn the dangers of running off from their group (and this is a tough thing to teach children and adults with no sense of danger!) or how to play on playground equipment correctly (again, a tough thing to teach sensory seekers!). But, I do not believe that any program should be a “one size fits all” program. Every child, special needs or typical, is different and those differences need to be considered when working with the child.

When Casey was in preschool, she refused to keep her hand on the rail as the group walked down the hall. I think she simply saw no need for it, so she didn’t do it. As long as she stayed with the group, her teachers and the aide didn’t care. Other teachers, though, force children to keep that hand on the rail. Why? As long as the child is walking with the group – who cares? Will it matter tomorrow?

And besides, you have no idea why that child/person may be avoiding something. How do you know that the rail isn’t painful to them? That it may hurt their arm to walk like that? Unless that child is verbal and can tell you, you don’t know. Forcing that child to walk like everyone else is just a power trip for that teacher. Again, I mean when the child is willingly walking and staying with the group – who cares where their hand is?

Maybe the child is avoiding doing an art project because the scissors hurt their hand? Or maybe they are embarrassed because they can’t use the scissors as easily as their classmates? Maybe the glue makes them gag. Maybe they simply do not understand what is being asked of them. And when the child refuses to do the art project, they may be labelled non-compliant and the teacher becomes frustrated.

I get it – you have laid out this wonderful, fun project (to you, anyway) about Valentine’s Day and that child refuses to cut out a heart. What is wrong with the child? Don’t they know that mom will love their project? Don’t they care about mom? Seriously, folks, I’ve heard teachers make these comments. I do understand the teacher’s excitement, but what about the child?

Every time you have a child that refuses to do something, stop and ask yourself “Why?” and really think outside the box. Maybe the person is hungry, tired or sad. Maybe they are thinking about the dance they get to go to later that day or maybe they are thinking about Legos or pizza or coloring books. Maybe they are wondering where the teacher got those cool socks. Teachers and staff tend to take non-compliance personally and usually, it has nothing at all to do with them.

I once taught a little guy who has autism and ODD (oppositional defiant disorder). He would sign that he wanted to go outside, but if you said, “Ok, let’s go” he would refuse every time and I ended up standing in the hall while he sat. He went against everything that was said to him – even if it was something he wanted to do. It was his disorder. I soon learned if he wanted to go outside, not to say a word, but to go get my coat and he would happily follow, because it was his idea. I spent a lot of time sitting in the hallway while he hung upside down as he tried to decide whether he wanted to do what I suggested or not. (I have to say – even with all of that, he is one of those little ones that gets into your heart and never leaves. He always has a smile for me when I see him now and it’s been years since I taught him).

Consider that the person may have sensory issues you are not aware of. Sensory issues ARE real, not just a way to get out of doing things. They are painful and distracting and stressful. If you don’t believe me, think about being put in a small room, music is playing, a candle with a strong odor is burning, the lights are flickering, the heat is turned up, the clock is ticking loudly and you are being forced to wear clothes that are itchy. And – you are told that for lunch, you are being fed something that absolutely turns your stomach. And, someone comes in and says, “Read this story. Answer the questions. And sit still, no wiggling.” Let’s see how long you last. Don’t fool yourself – you will be a grouchy mess.

And that’s what some of our kids live with every – single – day. Teachers and staff need to understand that. They also need to know that people with autism can “read” others. They know who respects and cares for them and who is only there for the money. And they will respond to those that respect them in a completely different way. If the kids know someone doesn’t like them, why in the world would they want to anything for that person? I have learned that if Casey or Rob avoids someone, there is a good reason and I should avoid that person, too.

As I said, some compliance is necessary. I believe Casey and Rob should help clean up messes they make. They need to take their medications. (although, if someone refuses to take theirs, think about their reasons. Maybe they feel worse after taking it? Maybe they don’t trust the person giving it to them? Always, always, think outside the box!) It can be very hard to discover the reasons behind many behaviors, but it has to be done.

Often, a new set of eyes can help. When you are too close to a problem, it can seem insurmountable, but someone new might see something you haven’t noticed. I’m always open to people giving me their ideas. I know sometimes I get stuck and can’t get past my irritation at the behavior or the fact that I’m just too tired. Ask for help before you do something you will regret. If your frustration is too great, walk away from the situation! One wrong action could have devastating affects on the person you are working with.

There are some people who are simply not cut out to work with people with autism. They don’t have the right temperment or passion. They may think it will be easy and when it isn’t, they get angry and do things without thinking. I get that – I’ve done that. But – our kids need to be surrounded by people who love them – not bullies who will force them to do what they are told. Yes, I do think some teachers/staff can be bullies. It becomes “You WILL do what I say, no matter what.” It becomes a battle of wills and trust me when I say this – no one is better at winning a battle of wills than a person with autism. You will not win. And if you do, it’s only because the child became bored and gave up. But, if it is truly something that child doesn’t want to do – they won’t give up.

And then you need to ask yourself “Is this the hill I want to die on?” That question was used in military strategy sessions in regards to whether holding a certain position is truly worth it. Think about it. If winning this battle meant losing your self-respect, is it worth it? Nope. It isn’t. So when things become intense and you are thinking about forcing someone with autism to do what you want, stop and think…

Is this the hill I want to die on?

Will this matter tomorrow?

If either answer is no, then walk away. The person with autism didn’t “win.” You both did.

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Autism and Being Thankful

Autism and Being Thankful

Years ago, when I did the children’s chats at church every Sunday, I would always ask the kids what they are thankful for. The catch was – it had to be something others might think was silly, but that meant a lot to the kids. It was always interesting to hear what they had to say, but it was also a surprise at how hard it was to get them to open up about silly things they were thankful for. So this week, in the spirit of the season, I’m going to share a few things I’m thankful for this year.

  1. We all survived the time change. For anyone without a child with autism, that may seem silly, but oh my God. Time change week is never fun. The only good thing is that the change in the fall makes Casey and Rob want to go to bed earlier. But, not necessarily to sleep… they lay there and talk and sing and then when it is time to be quiet, they are too wound up to sleep. Time changes suck and I have decided to convince the Ohio legislature to do away with it (there has been a bill laying around for a few years) by taking Casey and Rob to every politician against doing away with it and say “Here ya go – enjoy time change week!” and leave them. The bill will be passed in a day or so! 🙂
  2. I got a list of “wants” from both kids this year! Last year was the first time Rob ever told me anything he would like to have from Santa. Signs, of course. For his birthday in August, he asked for certain colors of Legos. A few weeks ago, he said he wanted signs, but this morning, he added a railroad, Legos and crayons! Casey gave me her list weeks ago and it was basically the same one she has given Santa for years – only the colors of the shirts she wants change and the stuffed Sesame Street character. If you can’t get a list of ideas from your kids, please don’t think about their actual age – buy what they would like. Casey and Rob will get lots of things that are no where near age appropriate, but that will make them happy. And that’s your goal, right?
  3. While I will never get rich teaching preschool, I am thankful that I can work a few blocks from the kids’ day hab and that I am able to be home with them until they are picked up each morning. I’m also grateful that my co-workers are so understanding when I’m exhausted from too little sleep or frustrated about service issues. And if I need time off to deal with those problems, it’s not a big deal. Every time I think I need to look for another job, I think about those facts and know that I need to stay right where I am. 🙂
  4. Speaking of their day hab – I am so thankful they both love going there and that they are given so many opportunities to do things that they enjoy. I’ll admit, there have been bumps here and there, but right now, Casey and Rob are both happy to get on the shuttle in the mornings, so I know they are excited to be going. Casey can volunteer to her heart’s delight and Rob can join in whatever strikes his fancy that day. It wasn’t too long ago, he spent his days in his therapy swing, basically hiding from everyone. I am constantly reading stories of other families who are desperate to find somewhere for their adult child that will serve their needs. We have several options in our area, but many places have none – or waiting lists that are years long. For a small town, we do have a lot of day hab options.
  5. I am thankful that we all enjoy long hikes together. For many families, actually doing things as a family is difficult if not impossible. Casey and Rob both love hiking and it’s something we can all do together – not to mention the amazing exercise we get! It took years to get to this point. We are finally able to try new things and see how it goes. Last summer, we were able to get away a few days without Rob stressing the entire time.

All around us, we are hearing statements telling us to share what we are thankful for – things we are grateful for. It’s just that time of year. I urge you to look around you and find things to be thankful for, too. I know that in the midst of sensory meltdowns, fighting with insurance companies, little sleep and the stress from every day things, it’s hard to think of anything to be thankful for. But, every day, find something small. There were times I was thankful I could walk downstairs and get the laundry without a screaming meltdown because I disappeared.

I was thankful that neither of them tried to leave the house during the night. Neither played with knives, fire or cleaning products. As much as I got tired of their routines, at times, I was thankful for those same routines. Look around you – I’m sure there is something that you can smile about today. Maybe you got to go to the bathroom for a few seconds or got to have a cup of coffee while your child watched TV. Maybe your child didn’t cry at his new shirt or your daughter was able to give you a quick hug. Enjoy those times – relive those beautiful moments and say a quiet “thank you.”

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Autism and the Individual Service Plan

Autism and the Individual Service Plan

Last week, I met with Farrah, County Board of DD (their SSA) and Khisha, Hopewell, to plan the “outcomes” part of their annual ISP (Individual Service Plan). These plans are to make it possible for a complete stranger to come into our home, in the event of an emergency and know everything they need to take care of Casey and Rob. (Yeah – anyone else laughing? 🙂 ) It’s a great idea – and some of the info would be helpful, but unless you actually live here, a daily plan is nearly impossible to write. Farrah mentioned she would like to see it – so here we go!

A typical weekday morning – I am up first and shower (and lay out her hairbrush, toothbrush, toothpaste and deodorant) before I get Casey up. Before I go up to wake her, I set out her pills and juice by the refrigerator and either get out a yogurt or the toaster for waffles. If it is waffles day, her plate, butter, syrup and fork are all on the counter, too. Rob’s pills, koolaid and breakfast (three waffles and fruit, if it’s a waffle day – a pack of Brown sugar cinnamon pop tarts and fruit for other days) on the counter by the sink. And his deodorant. Many times, she is awake when I go upstairs, but some days, I need to encourage her to get out of bed. I also have to say “good morning” to whichever creature she slept with that night – right now, it’s “da biggest big bird” but that changes on a schedule I haven’t figured out, yet.

She runs down the steps, puts her clothes in the bathroom and gets her pills and juice. She reminds me if she needs a packed lunch that day. I pack lunches while she gets dressed and start her waffles when she leaves the bathroom. After she gets her shoes on, she goes into the dining room to get her three quarters for the day, then runs upstairs to get her coat and then I can brush her hair – never before she has her shoes on and her coat in hand. While she eats, I take Rob’s breakfast and pills to his room.

Like his mom, he prefers to be left alone until he is a little more awake, so he enjoys his breakfast in peace, then gets dressed (right now, he is only wearing red shirts!) and his shoes on. He grabs his coat as he leaves his room, throws his cup in the sink in the kitchen and checks the pantry for interesting snacks, if I forgot and left the door open. He grabs his quarters (that he never uses!) and sits in the recliner. She sits on the love seat and goes back to sleep while he insists on channel 10 on the TV (that he never watches) and checks his lunch box for the required items. (at this point, an orange, an apple, fruit snacks, pop and another fruit)

When the shuttle comes, they both run to the door and he starts “singing” as soon as he gets to the shuttle. (I’m sorry, driver – I have no idea why he’s doing it!)

Before they get home at 3, I put her pill, drink and a snack beside the refrigerator and his by the sink. She usually gets a cup of fruit or a yogurt. He wants three “big pretzels” (only the rods of a certain brand from one store in town!) but is okay if I am out of the pretzels to have cheese crackers (but again, only a certain brand!). When the shuttle drops them off, he starts “singing” as soon as his feet hit the ground. She runs through the house to put her shoes in the closet and then upstairs to hang up her coat. She may or may not come right back for her pills.

He empties his lunch box (with reminders!) grabs his iPad, pills, snack and juice and goes to his room. (If he runs right to his room, I know he has something he isn’t supposed to have – he thinks he is being so smart! HA!) He will sit in there for a few minutes before he comes back to say hi. She takes her pill and drink and sits on the love seat, then goes back for her snack. Then, she may lay down for a while with her iPad or go to her room and fold socks. She will also ask what is for supper and gets irritated if I don’t have an answer ready for her.

They both enjoy free time until supper. I make one plate, then the other and as they start to eat, I fix my own, then give one seconds, then the other (small amounts!) and finally sit down to a meal that I don’t even want anymore. If we are having something Rob doesn’t care for, he makes something for himself (frozen pizza rolls are his go-to thing right now – but only at home and only a certain brand!)

After supper, she goes out to the patio and sits on the swing, sometimes for an hour or more. Between 7:30-7:45, I tell her to start her bath water – she says “no” as she is getting up to do it. While her tub fills, I get out their pills and drinks again, then help her wash her hair and ask what she wants for a snack. It is waiting for her when she comes out of the bathroom. She eats and goes to her room. I tell Rob it’s shower time and start his water for him (he will burn himself) and help him wash his hair. (I also remind him he has more body parts than his face and under his arms! 🙂 )

I ask him what snack he wants, but he usually tells me before his shower. It’s waiting when he gets done and then he goes to his room, too. If his iPad happens to be dead, he might sit in the living room with me, but he only wants to watch ESPN – and it doesn’t matter what is on – that’s what he wants!

At 9:30, I take both iPads and tell them good night and that I love them. Do they go to sleep? Nope, but I need quiet time to chill out and this routine is helping Rob sleep better. I don’t want to change it too much for fear of what may happen! 🙂

Our schedule doesn’t really change on the weekends, except they sleep as long as they would like. Otherwise, pills are waiting, meals are the same, bath times are the same and bed time routine doesn’t change.

The funny thing is, when they sleep at my parents’ house, none of this matters to them. They keep basically the same schedule, but don’t get stressed if it isn’t exactly. And Rob will eat snacks there that he refuses here.

And during all of this, we have to always keep in mind the “rules” of our house. I wrote two blogs about them – for laughs, here they are – Autism and Our Very own Personal Rules to Live By and More Never to Be Forgotten Rules of our Autism House . The funny thing is, so many things in our lives have changed (and can change in an instant!) but these rules have applied for many years. Both of them have eased up a little in the rules, but not enough to say they aren’t rules anymore. Just more fun and excitement in our happy little circus!

Have a wonderful week! 🙂