An Autism Mom’s Hardest Confession

An Autism Mom’s Hardest Confession

This is a hard thing to admit, but I think other parents need to hear it – and to know it’s okay to have these feelings. I hate saying it, but… At times, I was embarassed by autism.

Now, before you get on a high horse and start telling me that no mom should ever say something like that, let me say – I was young, exhausted, inexperienced and the world was different 30 years ago. And – it’s okay for me to have had those feelings. It’s okay for you to be embarrassed or angry or sad or frustrated. It’s okay to let those feelings out.

It’s not okay, however, to take those feelings out near your child. Walk away, take a break, hide in the bathroom. The only thing your child should feel from you is love and pride.

Casey’s deep need for routine and strict schedules caused both minor and major issues while we were out and about. Only once was it a total and complete meltdown (you can read about that here) but there were many, many times she would start jumping up and down, or scream once, or grab onto me and try to shake me. I felt like every eye in the store was on me. She didn’t like being told no and didn’t have the communication abilities to talk to me so she screamed.

Casey and Rob both were runners. I had to put him in the cart in stores simply because I couldn’t keep a tight grip on both of them and still push the cart. (I have to say – even with them taking off, it was Mandy that I actually lost one time. In a water park. I told her to stay in a certain section with us, not realizing everything was connected. She made a friend and wandered off. There were thousands of little blonde girls wearing pink bathing suits! 🙁 ) When they were little, at times, I was embarrassed by the looks I got from people who had no idea why I put him in the cart and had a death grip on her.

Rob’s sensory issues made a the cart a safer place for him and I lifted him into it as long as I could physically get him in – he needed it. The lights, smells and noises in the stores were too much for him. If he was in the cart, he could cuddle under his coat or put his head in his hands so he didn’t have to see so much.

One day, two boys decided to laugh at him about being so big and being in the cart. They chose the wrong day to laugh at Rob. The second time we passed them, they again made a comment and I stopped them. When the lady with them turned to see what was wrong, I explained her boys were laughing at my son with autism. I hope those boys remember that day. And I applaud the mom who gave them holy heck right there in the store with promises of what was to come when they got home.

Honestly, that was the best thing that could have happened. Standing up for Rob and explaining why he was in the cart helped me understand I didn’t have to ever feel embarrassed. I could try to explain and spread awareness. Or, if they weren’t willing to “become aware,” I could simply tell them to go to hell. Nicely, of course. It is really empowering to know you can change some people’s attitude by simply explaining.

Being embarrassed is something every parent, typical and special needs, goes through. It’s a little harder to deal with when people don’t understand why your child (or adult!) is flapping or rocking or humming or bouncing. So – explain to them. You don’t have to share many details – simply say they have autism and move along. If that person still wants to stare or make comments, you have to decide what approach you want to take – be nice, explain more, or be a little meaner. How I handle those times depends on the day. Most of the time, I walk away. When I don’t, I try to be nice. When it’s time to not be nice, I’m not.

If you are like me, you may feel embarrassed more when your child is first diagnosed. As the years go by, honestly, fewer things your child does will surprise you and it’s easier to roll with the flow. Rob still like to repeat numbers or colors or Power Rangers when he is in stores – loudly. I remind him to use a quiet voice and we move on. I don’t think much about it anymore. My guess is you will get to that point, too.

Autism demands that you learn to let things slide (up to a point!). You will learn to ignore stares and comments. You will learn to not take things personally – from doctors, teachers, insurance companies, strangers. You will learn to be stronger than you ever thought you could be. You may not feel it all of the time (I sure don’t !) but you will be.

And maybe, someday, we will live in a world where people are just accepted for who they are and no one will ever have to feel embarrassed by autism again.

Autism and a Christmas Party

Autism and a Christmas Party

This post is going to be a little different, as usually I’m talking to families or professionals that are with people with special needs every day. This post is for those who have little to no experience with people with autism. Please – print and share this with anyone you may encounter this holiday season!

While Christmas is a very magical time for most people, for those with autism, it can be even more difficult to handle the day to day stress and anxiety. Unlike what many people believe, people with autism do enjoy the holidays – on their terms. They may not be able to tell you what they want for Christmas or tell you what they would like to do, but they want to be a part of the excitement, too. Again, on their terms.

Some may enjoy a huge, loud party with all kinds of food and plenty of people to talk to. Casey and Rob would hate that. They much prefer small gatherings with people they know and are comfortable with. My point is – just because my kids would hate it, doesn’t mean their friend Brandon would. Tyler and Adam like to be the life of the party, while Riley prefers smaller groups. There is no one size fits all – but, please… invite us. We don’t want to be ignored. We may not be able to come or stay long, but you have no idea how happy we are just to be included.

Going to stores can be especially tough during this time of year. The stores are crowded – things are moved around – the music is loud. Sensory issues can can an overload and a meltdown. We don’t need your laughs or your negative comments. Either be kind or get away from us. Trust me – nothing you say will surprise us autism parents. We’ve heard it all. Just remember – our patience is saved for our children, not for you.

Excitement may be hard for people with autism to handle. They may rock or hum or flap their hands or squeal. Be happy and enjoy their excitement – you don’t need to be concerned. Anxiety may be higher and cause more calming behaviors, such as rocking or squeezing their hands or cheeks (Rob used to squeeze his chin as hard as he could when he got anxious. Now he flips at his ears.) Again, you don’t need to worry. Ask if they need help, if you can be kind.

Be understanding if we come to your party and bring our own food. Casey will eat almost anything. Rob won’t. Riley won’t. Tyler and Brandon aren’t as picky. Adam only likes certain things. We aren’t saying we don’t like your food choices by bringing our own food. We are simply hoping that if our children have what they need, we might be able to enjoy your food and a few minutes to eat it.

And – understand if we come to your party looking like we are moving in. We may have a favorite blanket or stuffed animal, an iPad, coloring books, headphones – you name it and we may be packing it. We are not spoiling our kids – we just want them to enjoy themselves in the hopes that we can have fun, too. If you have a spare room that we could use as a quiet space, that would be amazing.

And, please, please, understand that many of our kids believe in Santa forever. Don’t spoil that magic for them. Casey believes in Santa and the Easter Bunny. Rob will talk about both, but whether he truly believes in them or goes along for Casey’s sake, I don’t know.

On last thing – we know our lives can be confusing to those who don’t live them. If you have a question or concern, please ask us. It may be hard to talk about at times, but we would much rather be asked questions than to be ignored. Learn more about autism. Discover how amazing people with autism are. Accept us and you will find the most wonderful love and joy.

Autism and the Perfect Storm Weekend

Autism and the Perfect Storm Weekend

You all know what this weekend brought to us – a blue moon (second full moon this month!), Halloween, the time change and crazy wind. I’ll be the first to admit I was dreading this weekend. Earlier in the week, Casey was irritable and Rob was anxious and loud at times. I knew it was the effects of a moon that wasn’t even full, yet.

The last six times we had to change the clocks, Rob spend that Sunday in Casey’s room yelling his long black train anxiety song for hours – like all freaking day with breaks only to eat and shower. I was almost in tears thinking about that happening today. It’s amazing how stressed a body can get listening to the same phrase 2 – 3 times a minute for 12 hours. I was tense this morning before he even woke up. I was even hoping he would sleep in a little later, even knowing that might mean he would have a hard time going to sleep tonight.

Casey wanted everything she thinks needs to happen for it to be the “right” Halloween. But – there was no dance. She was okay with this as I decided to have a Halloween party (just for a few family) but she was concerned about trick or treat and carving her pumpkin. I’m not sure why carving the pumpkins was on her mind, but she asked many times and every time, I told her we would do it on Thursday. They both enjoyed carving (and were done in about 10 minutes – the same faces every year! 🙂 ) and she started asking about a party at Hopewell and the treats she wanted to take.

I had already dropped off the treats they each wanted to take, so she switched to the costume she was going to wear. Since her fairy costume had many pieces, I told her it would be best to choose a different costume for Friday so she would have everything for Saturday night. This worked and finally, Friday, she seemed to calm down and be okay.

Rob had moments of anxiety, but nothing too bad through the week. I knew the weekend would be the hardest on both of them, but Saturday was fine. She was excited about passing out candy to trick or treaters (thank God a few showed up – we only had about 15!) while wearing her fairy costume. He couldn’t have cared less about the little kids, nor did he want to put his clown suit on. When he saw others in costume, he put on his clown hat and tie for a few minutes, but then he disappeared into his room to build Christmas trees with Legos. He didn’t even try to get any food.

I kept them up a little later last night in the hopes that they would sleep in today. She was up and down all night, but thankfully, didn’t wake anyone but me up. After he went to sleep, he came to find me to tell me his toe hurt. I have no idea what he did but he wanted medicine and a band aid and went back to sleep. Last night was fun – being around my family always makes me so happy. We laugh and tease each other constantly, but they are my biggest supporters. 🙂

I was busy when they finally woke up and could feel myself tense up when Rob came to me for his pills and breakfast. But, he leaned on me for a minute, patted my head and went back to his room. I went on cleaning, but I was still tense – just waiting for him to run upstairs and start yelling. And…. it didn’t happen. Let me say that again…. it… didn’t… happen. He played with his iPad, built more trees and had lunch.

Then he took a nap. I was worried he was sick, but he said he was tired. I put more medicine on his toe (he has a small cut on it) and let him sleep. When he woke up, I thought the long black training would start, but it didn’t. I could finally feel myself relax a little. Even though his habit of time change weekend has been the same for the last three years, today, so far, he is fine. Even with the wind threatening to blow us away, he is fine. He hates weather changes and today, it’s blowing and rainy, then blowing and sunny and then back to rain. And he seems fine. Thank you, God!

So here’s what I want you to remember from this post. On your terrible, rough days, remember things will change. Your child will suddenly decide not to do whatever it is that drives you crazy. It won’t be on your time frame, certainly, but it will happen. You don’t have to think about how you will handle this in the future because, trust me, they will think of something different. Just to keep you on your toes, of course.

During the times you are simply exhausted and frustrated with a world that can’t or won’t understand your amazing child, take a deep breath and know that changes will happen – usually when you don’t expect it. I never dreamed that Rob’s time change habit would change during a weekend of complete upheaval with a holiday, a full moon and crazy weather, but it did. I don’t care why. I’m just so glad it did. I’m so glad I could let go of the tension and take a few deep breaths.

I wish I could snap my fingers and relieve your stress, but I don’t have any magic. I don’t have any words of wisdom that will help your child instantly. All I can offer is hope from someone who has “been there, done that.” I know it isn’t much, but please, never give up hope. Your child may change as quickly and as unexpectedly as Rob’s time change habit!

Autism and Halloween Fun

Autism and Halloween Fun

I’ll be the first to say – Rob never enjoyed trick or treating. He didn’t like the costume (I was careful to pick something simple for him to try). He really didn’t like going up to strangers and he didn’t care about the candy. Mandy loved going. Casey wanted the candy, but her desire to go had more to do with “it’s what you are supposed to do” than any real understanding of it. And, when they were little, autism wasn’t well-known. I heard many comments about them not saying “trick or treat” or her trying to grab a certain piece of candy. I don’t miss it. The only times I remember Rob really enjoying it was the years my brother brought his 4 wheeler over and pulled them in a wagon. Rob loved that! (He may not look like in the picture- he was ready to ride and not sit for a picture! 😊)

When they got a little older, there wasn’t trick or treating for a few years and then I told Casey she was too old to go. I bought a little candy for them and we visited grandma and grandpa on trick or treat nights. Two years ago, she wanted to pass out candy and looked forward to that for weeks. The big day came and she laughed and giggled for hours. It was a cold, damp evening. She handed out candy to two children and said she was done. Guess who got stuck handing out the candy? (It had to go – we had too much to keep around here! 🙂 )

It also helped that our county board of DD held a Halloween dance every year and they got to wear their costumes to Hopewell. She still asks about trick or treating, but only for “da widdle kids.” Of course, this year, their dance had to be canceled so I decided to have a little party here. (No worries – only a small family group. 🙂 ) Casey is very excited about it and wants to pass out candy before it starts.

Holidays can be so hard for families like ours. Our kids don’t always understand that others think they are too old for some things. Personally, if your adult/teen child wants to go, take them! If someone doesn’t like it, tough. These days, most people are more aware of disabilities and are much more accepting. And you can always “educate” the idiots who choose to say something mean to your child. Some people have purchased blue pumpkin buckets (for autism) for their children to use. Others feel this isn’t necessary. Again, you need to do what you feel is best.

I am a firm believer in Casey and Rob getting to try everything they want to try. If Casey truly wanted to go trick or treating this year, I would take her. The people in our neighborhood would be happy to give her a piece of candy and I so appreciate all of them for that. Honestly, she just wants to celebrate the holiday in whatever form we choose. I did buy candy to hand out and I’ll let her try that in her fairy costume. He chose to wear a clown hat and tie this year. (And he has worn that hat many, many places already! He’s easy to spot! 🙂 )

We have our own traditions for enjoying each holiday and that may be what you need to do, too. If you are truly worried about the reaction your child may get trick or treating, talk to a few neighbors beforehand and explain the situation. That way, you can relax and enjoy watching your child try something new. Or go to a “trunk and treat” that many organizations have. These are often held in the afternoon and in a smaller area so it might be easier to keep track of a child who tends to run.

Maybe your child would enjoy passing out candy. Or decorating a pumpkin with paint or stickers instead of scooping out that yucky stuff. If your child can’t wear a costume, decorate a shirt for them or choose a silly hat. There are so many options to make this holiday fun and relaxing for all of you! Don’t feel like you have to follow everyone else’s ideas. Our lives are unique and our holidays should be, too! The smallest thing could make your child very happy – don’t compare what you did as a child to what your child might enjoy. Keep things simple for all of you!

As for us, we’ll be carving pumpkins this week. As much as Rob hates getting his hands gooey, he loves carving pumpkins. They will both carve the same faces in their pumpkins that they have for years. He might surprise me as the pumpkin he brought home from Hopewell is different, but I’m guessing someone else drew the face. Maybe not. He’s constantly surprising me these days.

Happy Halloween to all! Be safe and have fun!

Autism and Medicine Changes

Autism and Medicine Changes

At their doctor appointment a few weeks ago, the neurologist and I decided to reduce one of Casey’s medications. We did it last year and she had no issues and were hoping this year would be the same. This medication can cause an increase in appetite and weight gain, so lowering it would be wonderful. Plus – as grateful as I am that their medications help them, I would love to reduce the amount for both Casey and Rob.

So, at bedtime, I reduced one of her medications by half a milligram. Not much, but thoughts of her being upset all of the time were in my mind. Until we figured out the best medications for her when she was younger, she was not a happy child. Meltdowns were terrible and while some were definitely sensory related, others were simply because life didn’t go as she wanted. She needed a strict routine with no changes. And life simply doesn’t work that way.

Last year, their appointment was after our county fair. For those who have followed us for a while, you know how important the fair is to both Casey and Rob. Those days of riding rides were amazing to them. The rides decreased Rob’s anxiety and helped his proprioceptive senses calm. The more a rides spins, the better they like it. And the fair was somewhere they could both enjoy, despite the crowds and the noise, up to a point. I always knew when it was time to go because they starting shutting down. Their eyes told me.

So, the last time we tried a med change, it was after a week of fair and their Halloween dance was in a few weeks. Life was good – it was as it was supposed to be.

Which brings us to this year. Their appointment was before our fair is usually scheduled. By then, both of them knew the fair was canceled, but Casey hadn’t really accepted that there wouldn’t be a fair. She understood “cancel” but she was still hoping. They have given up so much this year – this seemed to be the last straw for her.

So I reduced the med and started watching for reactions. I knew it would take at least a week (this medication builds up in the body) before I would see much of a change. The day after their appointment was the day the fair usually starts. And Casey was irritable. Not full blown meltdowns or even screams, just irritable and on edge. I knew it couldn’t have been the med that quick and tried to reassure her that we had lots of fun stuff planned for October.

They both had fun shopping that weekend and picking out the rest of their Halloween costume pieces. We talked about our Halloween party (since the dance was canceled, I thought we would have a small party so they would have somewhere to wear their costumes.) We talked about going hiking and seeing the pretty leaves. They both were happy.

But, she is still on edge. She wants the fair. She wants her dance. She wants to clean up the fairgrounds and look at Christmas lights and go to Mandy’s and go see scarecrows and go swimming and go to McDonald’s. She is jumping from one thing to the next and is fixated on odd events – like cleaning up the fairgrounds. I’m not even sure what she means. Unless it is that there were food stands there and she saw trash. (they did get some “fair food” one evening.)

My concern now is – are her fixations from the medication reductions or is she just fed up with all of the changes? Is it because she desperately loves the fair and looks forward to it all year? Or is the smaller amount of med too little? I want to wait a while before I give her the med back. I’m so hopeful that the farther we get from “fair” week, the happier she will be.

I miss my giggly, goofy girl. She still is, to a point, but that edginess is there and pops up at strange times. Ten minutes ago, she was repeating phrases over and over, trying to get me to tell her when we would go look at Christmas lights and now she is giggling at Elmo on her iPad. So, we wait and see.

I hate medication changes. It’s nearly impossible to guess whether the medication is needed or she just needs time to adjust to life with COVID. Medicines rarely have immediate effects. Many have to build up over 2 – 3 weeks. The waiting game is hard – is it helping because they are happy or has something happened that makes them happy that they can’t tell me? Is it not helping or has something else happened that they can’t explain. I don’t like the guessing game – or the waiting game. And, unfortunately, medication changes are both.

Unless she gets increasingly irritable or edgy, I’m going to wait until November to make any changes. That will give her body plenty of time to adjust and we will be far away from fair week and through Halloween. I don’t know what else to do but wait, as decreasing the med will be so beneficial to her, if it is possible.

My best advice to you if you need to start or change a medication is to keep a detailed diary of what happens. Write down any behaviors (irritability, inability to sleep, increase or decrease in appetite), but also include any changes that happen at school or in your home. Write down the weather – every detail of your child’s day. That will help you determine whether the med is helping or not. It’s time consuming, but it is needed. You can also do this to help determine if your child needs to start a medication. It will help your doctor to see exactly what your child’s day is like.

For me, I’ll make a list of things to tell Casey we can do and try to keep her mind off of the things we can’t. And wait and see how she feels in a few weeks.

Autism and Two Very Different Doctor Visits

Autism and Two Very Different Doctor Visits

We waited several months for our appointment with a specialist for Casey. Somehow, in the days before the internet, my mom found a pediatric neurologist who specialized in autism. In 1992, there weren’t many doctors who had even heard of Autism. Before we went to this appointment, we strongly suspected autism, thanks to a TV show Mom saw and a book that show recommended.

It was a two hour drive. Casey always has been easy to travel with so the drive was no big deal. The waiting room was full of toys and she happily ran off to explore while I filled out paperwork. Then… The nurse called her name and all hell broke loose.

She refused to leave the toys. She kicked. She screamed. She tried to beat her head on the floor. I was due to have Rob in just a few weeks and couldn’t easily get a hold on her. The nurse told Casey she could take a toy with her and she calmed down enough to choose one. I was so embarassed (now, 28 years later, it wouldn’t faze me. 🙂 ).

Casey refused to get weighed. She wouldn’t stand for her height. She turned away for a temp check. The nurse could have been a picture on the wall for all the attention Casey paid her. She was focused on the toy and that was that. Nothing else mattered.

When the doctor came in, she never looked up. He said her name. She ignored him. He got down on the floor with her. She turned her back. He reached around her to play with the toy. She moved to a corner with the toy. He asked her what color something was – anything to engage with her. Nope. Nothing. She knew he was there, but he had nothing she wanted so she didn’t care.

He asked me several questions and with each one, I knew for sure she had autism. When he asked what I thought was going on, I simply said, “Autism.” And he agreed. In all honesty, I didn’t think much about it. She wasn’t sick. She wasn’t in pain. She was still my sweet little girl. I had no clue what our lives would become within the next year.

The meltdowns started in earnest. Almost every day. Nothing I could do would calm her down. Plus I had baby Robbie and toddler Mandy. Life was exhausting. I rarely thought farther in the future than the next day. She was in preschool all day with speech and OT. At that point, she had a few meltdowns at school – most were at home. (I think she held it together as long as she could and then just had to let go).

She had a few scripted sentences she used when she wanted something. Few words, except Mandy, Robbie, cookie, potty and drink, were spontaneous. She sang entire songs – always with perfect pitch… Knew her ABC’s, could count beyond 100, knew more colors than I did. But she couldn’t say Mommy when she looked at me.

Rob was 7 before he saw the neurologist officially. He went to one of Casey’s appointments. He said hi to the doctor. He said mommy when the doctor pointed to me. He sat quietly and shared his toy with the doctor. He looked out the window. But, he couldn’t answer simple questions. He had major sensory issues. He rarely talked. He liked his routine. He was completely opposite of her. He got the same diagnosis.

Fast forward to last week. I took them for their annual check up with their neurologist. Casey jumped on the scale, insisted the nurse check her height and held her arm out for BP check. While Rob wasn’t as excited as she was for all of that, he did everything they asked.

When the doctor came in, they both looked at him and said hi. They were both able to answer several of his questions on their own. Casey told him what crafts she liked to do and that we wouldn’t have a fair this year. Rob told him he went swimming and Bob is his friend. The doctor was so impressed with how well they are doing – especially with so many things changed this year! He said many of his patients were having a rough time, but I told him they have just accepted the changes. (Not always happily, but who has??? 🙂 )

I thought of all of this driving home the other day. We can even stop for lunch and go shopping after their appointment. Even a few years ago, that wouldn’t have been easy to do without someone else with us. Casey did give me a scare in one store, but no meltdowns, no anxiety yelling. Just shopping for coloring books and blocks. Like a typical family.

I know some of you might be going through a terrible time right now. You may be living with things I never had to. But, please, never stop hoping and never stop believing your child will grow and change. People that knew Casey when she was in elementary school are shocked to see her now. Keep pushing. Keep believing. Keep your faith!

Perceptions of My Life as an Autism Mom

I was at an event a while ago and two different people made comments about the life I live. I didn’t think much about it while I was there, but driving home, I wondered about their observations. One is a close friend, the other an acquaintance. I started thinking about the perceptions people have about me and my life.

One perception people have about my life is that it’s never quiet. Ok – I’ll give them that one. There are quiet times in my house, but only when the kids are not here or are asleep. If it’s too quiet when they are here, I go see what they are up to. But – doesn’t every parent do that? And how many homes are quiet when the kids are home? Why do people think my house would be any different than theirs?

They may hear kids talking in their home. I do, too. Often a little louder and not as understandable as most people, but talking just the same. They may hear toys. Yep, got that, too, since Elmo and Casey’s toy piano can be heard often. They may hear music or movies. Yep – the same movies over and over again. But Casey’s music changes, depending on her mood.

Another perception is that I never get any sleep. When the kids were younger, this was true and, at times, we still have rough nights around here. (crazy weather and full moons are not my friends!) I finally found the right combination of meds for Rob to help him sleep, so most of the time, we all sleep well. (Knock on wood! 😊)

Here’s a good one.   People think I’ve got the patience of a saint.  🙂  🙂  And I do – with my kids, with people who have special needs.  But – if you are rude or obnoxious…  hmm… nope.  My patience stays with those who need it.  🙂  I will be nice as long as I can, then all bets are off!

Honestly, the perception that bothers me the most is that we need pity. I get why people might think this, but really, it just irritates me to no end.

Why would anyone feel sorry for us? Casey and Rob are happy. They have everything they need and most things they want. (I say that because right now, they want to ride rides at our county fair, which has been canceled. Thank you, covid… Now go away!) They love going for walks, buying coloring books and socks, playing cards and construction paper.

Do they have struggles? Sure – but we don’t need anyone’s pity. We need compassion and understanding. Every family has struggles – some are just really well hidden and ours are loud and more obvious at times. 😊

Yes, my life is different than most people. It’s different than my autism mom friends. But that’s ok. Being different keeps life interesting and fun. Yes, I do feel lonely at times and, yes, I definitely get tired of helping with baths. Yep – get tired of worrying about the future. Yep – get tired of always needing someone to be with Casey and Rob.

But – I also get to spend evenings on the patio with them, listening to giggles. I still get to believe in Santa and the Easter Bunny. I get to celebrate every… single… holiday. I get to have supper with them every night and tuck them in bed. (Usually more than once! 😊)

Instead of just assuming what my life is like, ask questions. I don’t mind and would much rather someone ask than not. The only way to make the world more accepting of Autism is to get information out and spread it around! That’s why we go places. Some times, our days out don’t go as well as I would like, but that’s okay. I can have a good cry (either on sadness or anger) and move on.

Our lives are different than yours. And I wouldn’t have it any other way. 😊

30+ Years of Autism and I’m Still Learning

30 + Years of Autism & I’m Still Learning

For more than 30 years, autism has been front and center in our lives. I find it hilarious that some people believe that makes me an “expert.” For one, neither of my kids are alike and another… No one is an autism expert. There are many people with a vast knowledge of autism – and you are the best expert about your child! Never doubt that!

A few weeks ago, the kids and I went on a boat with friends. Casey was scared to get on the inflatable that is pulled behind the boat, but with encouragement, she finally tried. Rob wouldn’t even attempt it and I was so surprised, as I thought he would be the one to jump on without a thought. After Casey rode, I tried and tried to get him to at least walk back and look at it, but he wouldn’t. Finally, I said, “Just take your shoes off and try, buddy!” and he kicked his shoes off, stuffed his socks in his shoes and was ready to get on!

What the heck? Then it dawned on me – he never, ever gets his shoes wet. When we go kayaking, he steps into the kayak without getting in the water. When we go wading, he always takes his shoes off. And he wasn’t able to tell me that’s why he didn’t want to do it – he didn’t realize he could take his shoes off. Casey and I were barefoot, but we were wearing flip flops – he didn’t understand that it was okay for him to take his shoes off and he wasn’t able to tell me that’s why he wouldn’t get on. I simply never thought about it.

Last week, I went into Casey’s room to pull her sheets off of her bed and stepped in water! Her AC had been leaking, but she didn’t see any reason to tell me. Her carpet was soaked and she had to have stepped in it to turn the AC on and off. But, thanks to autism, she didn’t even think about telling me. I forget so often that things that are important to me (like water in the carpet!) mean nothing to them. She wasn’t able to tell me or even think that it was something that I might need to know. Thankfully, the carpet dried faster than I thought and I reminded her several times that she needed to tell me when things weren’t right. (She can certainly let me know when her iPad isn’t working!)

Rob had a problem the other day and he was acting completely out of character. If I was an autism expert, I would have stopped and tried longer to find out what was going on, but as a frustrated parent, I didn’t handle it as well as I should have. When I finally had all of the facts from the situation, I apologized to him several times. I’ll admit – as much as I try to think about every possible trigger when things happen, some times, I’m tired and that doesn’t happen.

Every day, Casey and Rob prove to me that as well as I know them, autism is an ever-changing disability that will never be fully understood by me – maybe even not by them. I don’t think they always know why they do the things they do, but only that they need to do it. Their OCD causes both of them to have rituals to feel safer – she needs to jump into doors and tap things three times. He has to have all of the windows open – except the one in the craft room always has to be closed – or all of them closed and locked. I don’t understand why, but it’s really not a big deal and helps him feel better.

I don’t know why both of them are hypo-sensitive to touch, but he can’t wear certain clothes. To my way of thinking, if your skin isn’t sensitive enough to notice a cut or burn, why can it feel the differences in shirts? He will burn himself in the shower if he turns the water on himself because he doesn’t notice the how hot the water is – but he can’t wear long sleeves because they hurt? I just don’t get it.

I don’t know why some nights, he can go to sleep easily and other nights, he is up most of the night. Usually, if she has a sleepless night, I can pinpoint why, but not him. Water is soothing to him while she barely notices it. Just like everyone else, they have their own preferences and we have to learn to separate what is “autism” related and what is just their personalities. It’s not always easy, either. Every day, I learn more about Casey and Rob.

We have rough days – days that I think autism just plain sucks. Days that I’m so tired I can’t think straight, let alone try to figure out why they do things they do. There are days that I let chores slip and that I don’t think about the future. Let yourself have those days, too. You can’t be “on” all of the time. You will exhaust yourself – and who will take care of your child, then?

Never doubt you are the expert on your child. Doctors and others may know a lot about autism, but no one knows your child like you do. Just remember – while you are your child’s expert, you will never stop learning about autism. That’s the thing about autism – it seems as soon as you solve one mystery, another one will pop up. It keeps life exciting! (I choose to look at it that way so it doesn’t drive me crazy! 🙂 )

Please, though – share your knowledge and experiences with other autism families. What worked for you may not work for them, but you never know. And maybe only part of your solution will help, but often, just knowing other families have gone through the same things, will help. We will all keep learning together to make the best lives for our families. 🙂

Autism and Doing Things “Our” Way

Autism and Doing Things “Our” Way

I was really struggling to decide what I wanted to write about this week. I don’t know about anyone else, but the last few weeks have been a blur. I haven’t even posted much on our Facebook page. I don’t know why – I just don’t think about it or I’m too tired. Anyway, several weeks ago, Casey used fabric markers and spray paint (for fabrics) to decorate three shirts. She had been asking to tie dye for months, but we just hadn’t gotten around to it and when she finally had a choice, she picked the other way to decorate.

But – as typical Casey – she didn’t forget about the tie dying. She absolutely loves anything tie-dyed. The brighter, the better. She even has crocs that are tie dyed (tho she rarely wears them – I don’t think they are as comfy as she thought they would be). Mandy bought her two white shirts on sale and Casey began to remind me every few days she wanted to tie-dye them. Finally, last week, I remembered to order the stuff and today, we did her shirts.

I can’t even begin to tell you how excited she was! Huge grin, eyes sparkling, dancing around. I had looked up how to make different patterns and couldn’t wait to show her.

Casey, as usual, had her own ideas.

She carefully told me where to put rubber bands on the first shirt (one snapped, so she refused to try it herself). I just started to tell her how to put the dye to make patterns when the dye started flying. She went up and down the shirt squeezing the bottle as hard as she could and all ideas for special designs went out the window. But, as I stood and watched her carefully squeeze dye where she thought it needed to be, I noticed the twinkle in her eye and the big smile on her face. And I knew what my blog today would be about. It’s really simple – there is more than one way to do things.

Sometimes, we get so stuck on how we think things should be – how children will walk down a hall, how to tie shoes, how to sit at a desk, how to hold a pencil – that we forget not everyone thinks like us. And that is even more important when you have a child with special needs. They are incredibly able to adapt situations to fit their own needs. We forget that – I think because, especially with people with communication issues – because they won’t speak up for themselves and say “I want to do it this way!”

When she finished with the first shirt, she looked at me. I knew by the look in her eyes, she was wondering how to do the other one differently. I told her she could “color between the rubber bands” and that’s what she did – in her own pattern and squeezing as much dye as she could into each area. She still had the big smile and now she was giggling about it, too. I would have missed those special moments if I had made her do it the way I thought she should.

Living with autism for more than 30 years has taught me many things but the most important is to always think outside the box. Think outside what is considered “normal.” It doesn’t matter how you get to your goal, as long as you keep making progress in that direction. I had some wild ideas to help the kids when they were little. Some worked, some didn’t. And that’s okay. We just moved on past the ones that didn’t work and kept moving forward. Don’t get caught up in “the way it’s always been done.” Just because something has always been done one way doesn’t mean there aren’t better ways to do it.

Let your child be your guide. Use their interests (obsessions) to help teach other skills. Elmo showed Casey many things and I used lots of lines from the original Willy Wonka and Wizard of Oz to help Rob understand things. He knew those movies – he understood the words so I used them in odd ways, but it worked. Always think outside the box – who cares how silly something seems, as long as it helps your child?

Casey has very definite ideas about how her clothes need to be folded and put away. Rob couldn’t care less about how they are folded, but they need to be in a certain place in his room. And both ways are okay. Their laundry is folded and not on my dining room table, so I’m happy. I’m not going to ask either of them to do their laundry the way the other does.

Your child may be having sensory issues and that may be why they can’t do things the way you think they should. Maybe your perfume is too strong. Or the lights are flickering so much they can’t concentrate. Maybe their shirt is painful or they are hungry. Until your child can tell you why they don’t want to do things your way, you have to learn to relax and be happy they will do it their way.

There are a million ways of doing things. As long as your child is making progress, who cares how they get there? Relax and be happy!

How to Talk to an Adult with Autism

How to Talk to an Adult with Autism

I have to take a three hour class every year to continue to be Casey and Rob’s guardian. (Don’t panic if you don’t do this – I have discovered that even different counties in Ohio do things differently!) Yesterday, I sat through one about dementia. Honestly, I was interested in the topic as I have had some family members who had varying types. Sadly, I was bored out of my mind – they could have been talking about a person with autism.

Many different types – varying degrees of severity – medications might or might not help – how to advocate for the person…. isn’t that our lives? But – one thing that did stick out was one of the speakers was describing how not to talk to a person with dementia – as if they were a child, in a high-pitched, sing-song voice. (Even though that’s exactly how she seemed to be talking… but maybe I was just over the boredom and wanted to be done! 🙂 )

I can think of so many people that have no idea how to talk to Casey and Rob. Some, in particular, like to yell in their faces, because, you know – Casey and Rob are deaf. 🙁 I have repeatedly asked these people NOT to yell in their faces, but it goes in one ear and out the other. And those people wonder why my kids ignore them? Thankfully, they are rarely around those people. But still – how many people talk louder to someone who appears to not be paying any attention?

We have all done it. Maybe to get the person’s attention – maybe from our own frustration. Who knows? What I do know is if I talk loudly to either of my kids, they will shut down. Rob will get anxious because he thinks I’m mad. Casey will just make ignoring me a higher priority. So – always remember to use a calm, quiet voice. Trust me – they hear you whether they are acknowledging you or not. Yelling will cause a shutdown or worse.

Always speak slowly and clearly. Rob, especially, hears way too much. If there is a lot of background noise, it may take him a few seconds to understand what you said. Don’t talk with food in your mouth – don’t rush through what you want to say.

But don’t use too many words, either. Short and sweet. If you are giving directions, don’t list too many at once. I’ve spent many hours saying “Fold the blue shirt.” “Fold the black pants.” “Wash your face.” “Wash your arms.” and so on and on. Casey and Rob can follow 4 – 5 directions now, if they are familiar. If it is something new, be ready to break it down into one steps directions and be clear and concise about what you expect. It takes a while to build up to several directions at once. If we are having a rough day, we stick to one at a time. Every day is different so don’t be discouraged if you lose ground some days.

Never, ever talk to an adult with autism as if they were a child. I don’t care if you are talking about Elmo, The Wizard of Oz or Thomas the Tank Engine. Talk to the person just as you would any other adult. Casey and Rob hate to be “talked down to.” Casey will say they are “dults” not babies. Rob will just look at you as if you have lost your mind. I know it’s hard to do when you might be having a conversation about Bert and Ernie or Barney, but to the adult with autism, those characters are friends, not babyish. (By the way – I have perfected talking in “Elmo” and “Cookie Monster” voices. 🙂 🙂 My life is now complete!)

Explain what you are doing, even if you don’t think the adult with autism will understand. My kids know more than they will ever let on. I see bits and pieces come out and I’m always amazed. Rob loves to look up things on his iPad. He studies how things work on YouTube. He googles “squeaky brakes” or “broken fan” to see how to fix them. When we are baking cookies or cupcakes, I talk to them about each step we are doing. “The sugar makes the cookies sweet.” “The oven has to get hot first.” Many times, I don’t think they are really focused on what I’m saying, but then the next time we make cookies, one or the other will repeat something I said before.

Don’t use a high-pitched, fake happy voice. For one thing, the high pitch may be painful to the adult with autism who has sensitive ears. For another, even if the person functions at a child’s level, they know they are adults. You are insulting them by talking in a baby voice. Just stop it. Imagine how you would feel if someone talked to you like that. I would want to slap them, wouldn’t you?

Always, always give the adult with autism time to process what you said. This is really hard to do, as we are so used to the give and take of a “normal” conversation. I heard this tip when Rob was small and it really helped him. When I ask him a question, I count to 30 slowly before I repeat the question. Casey tends to answer quickly most of the time (if it is something she wants to answer… if not… she will ignore you forever!) Rob does much better when he is given the time to process your request and decide how to answer. Thirty seconds can seem like forever while you are waiting, but it does help. Don’t keep repeating the question – he will shut down.

On that note, try not to ask questions. Use statements instead. “Tell me what you want” is easier to answer than “What do you want?” Casey has an easier time with questions, but “why” and “how” questions are extremely difficult for both of them.

Many of these ideas will work if you have children with autism, too. Sometimes, with a child, you need to use a silly voice to get them to want to interact with you. Don’t be afraid to be silly with kids or adults! Any kind of interaction is so awesome! You may not be comfortable being silly, but try anyway. Life is too short to be serious all of the time. If I can say “Me want cookies” and “Elmo loves you” or “he he he that tickles” in character, then you can use a silly voice, too. 🙂