Autism and the Need for Discipline

Autism and the Need for Discipline

It’s hard to imagine but I have talked to many families who have a child with autism who have told me they won’t discipline their child. They feel the child will not understand and will make the behaviors worse. I’ve also been told that having autism makes the child’s life hard enough, so why make them follow rules? Hmmm – what the heck are they thinking??

We all have to follow rules! I personally find speed limits rather confining and wish I didn’t have to follow them. I’m sure each of you has a rule or two that you would rather not follow. But – that is life! Everyone has rules to follow and allowing your child with autism to get away with anything they want is only setting them up for failure. They need to know boundaries and you need to enforce them.

Yes, it is much harder to discipline a child with autism, but you can do it! As a parent, that’s one of your jobs. If you wouldn’t let your “typical” child do something, then the ones with special needs don’t get to do it either. It’s really that simple. The question is – how to discipline?

First, you need to understand that every behavior is communication. Every single one. We all do it! We smile. We say thank you and please. We avoid people or things we don’t like. We look for what we enjoy. Just like our kids do. For every behavior, look for the trigger. Yes, this is hard and may take weeks. Keep a journal of what happened right before the behavior.

What did your child eat? Are they sleepy? Are they wearing new clothes? Did your routine change unexpectedly? Is there someone new around your child? What time of day did it happen? It is tedious work, but keeping a journal is the easiest way I know to discover a pattern of the behavior and might give you a clue about what is happening. Write down every detail you can think of. You might be surprised at what you find out.

Casey had a terrible time in Kindergarten between 9:30 and 10 every morning. She refused to eat breakfast and never said she was hungry, but as soon as I started sending a small snack for her to have about that time, her behaviors diminished. Had I not insisted on knowing what time she got upset every day, I never would have discovered the simple truth that she was hungry. You will need the help of everyone who is around your child. Don’t be afraid to insist on details!

Second, you need to learn what behaviors are caused by the autism and which ones are simply the child being a turkey. (And for any one who thinks a person with autism can’t be a turkey, come spend time at our house – you will soon change your mind.) Casey is especially good at doing things she knows she isn’t supposed to and smiling a sweet, angelic smile when she gets caught. Nope – doesn’t work on this mama. I tell her she’s cute, but she’s still in trouble. 🙂

You need to discover whether your child is having a meltdown or a tantrum. A tantrum is where they are screaming to get what they want and they will calm down as soon as you give it to them. A meltdown is often a sensory issue and they simply cannot calm down. Many times, they may not even realize you are with them. You cannot talk them down and you can’t touch them. You can only wait for it to be over.

When Casey is in meltdown mode, she has no clue I am with her. She is out of control screaming, hitting her head, flopping around and she isn’t saying any words – just screams. It took me years to realize the best thing I could do for her at those times was to be sure she was safe and stay out of her way. And to be ready with a head rub and a kiss (and a hug, if she wanted, but those were few and far between). When she was younger, I did make her go to her room when she was upset, as she was able to destroy things without realizing it. The back door window, the garage window, the bedroom window, the door, the banister for the basement steps…. and she never left a bruise or a cut on her. It was safer for everyone if she was in her room. I stayed in there with her and let her scream.

The end of those meltdowns is one of the things I’m most grateful for. Once in a while, she lets out a scream to wake the dead, but I can usually (fingers crossed!) talk her down before she loses control completely. It is not a pretty picture.

Now, I can see that her meltdowns were almost always (She could be a turkey! 🙂 ) related to her autism. Changes in her routine were terrifying to her and she screamed about it. Certain sounds were extremely painful to her, but while I knew they bothered her, I didn’t realize how badly. Any kind of change was likely to bring on the screams. (remember the story of the band aid on her toe? or the gloves in the summer?) She just didn’t have the words to tell me – she screamed her pain instead.

She used to chew the feet on Mandy’s Barbies and make Mandy so mad because the shoes wouldn’t fit anymore. I made pictures for her over and over that chewing feet was NOT okay, but she needed the deep pressure. It was so hard to help Mandy understand that Casey (and Rob, at times) weren’t being brats – they needed the pressure that chewing brought. I hated that I couldn’t make any of them understand.

As for how I disciplined them, it was different for each of them. For Rob and Mandy, just knowing I was mad was enough to curb the behavior (though Mandy does like to tell the story of me smacking a wooden spoon on the counter to get their attention, how it broke and they all scattered to their rooms! 🙂 ). I had to be more creative with Casey. Sometimes, it was threatening to take away a trip she wanted to go on. Sometimes, it was to send her to her room. Sometimes, it was to sit on the couch with me.

How you choose to discipline your child is up to you. Only you know what will work for your family. And yes, it will get ugly, but you are not doing your child any favors by not teaching them proper behavior. It may take years, but that’s okay – your child will learn! You may choose to take away a favored item or use a time out chair. Remember – discipline is only to be used for bratty behavior! It is never to be used for behaviors caused by their autism. For those, you will have to help them work through those issues. Again, it is hard and it is exhausting and you will feel like crying and quitting, but you can’t!

Honestly, it may be someone besides you that realizes what is causing a meltdown. Sometimes, we are just too close to the situation to see all of the possibilities. Don’t be afraid to ask someone to tell you what they notice! It does take a village to raise a child! I’ve had other people tell me what’s wrong often and I’m not upset that they noticed it before me – I’m just grateful that I know what is causing the problem so I can work on fixing it!

I know discipline is just another “thing” you have to deal with, but it’s so important. Your child needs to know their boundaries (streets and water come to mind!) so they are safe. Of course, most of our children have no sense of danger, but they can be taught (and always, always watched, as the temptation of water is always a strong one, it seems!).

How do you discipline your child? What techniques work for you?

Autism and a Fun Day to End a Special Week

Autism and a Fun Day

Casey and Rob came home Friday morning after a week at Camp Echoing Hills. Rob leaned his forehead on mine for a second when he saw me, while Casey gave me her sweet smile. It was getting miserably hot, even early in the morning, so they didn’t want to stand around too long. We drove around to the building where Mandy works so they could say hi to her and headed home.

She went right to her room to listen to music and fold socks. I peeked in after about an hour and she was still happily swaying back in forth in front of her dresser folding her socks. Rob crashed. He turned his AC on and that was that. He got up for lunch and went back to bed. I hope that doesn’t mean he kept his entire cabin up the whole week!

Rob told me he watched Mary Poppins and he went swimming. He ate Pop Tarts. And he went swimming. He took a shower. And he went swimming (are you starting to notice the pattern? 🙂 ). He was happy to be home, but he had fun, too.

Casey said she saw animals (she didn’t go to the barn alone! Score one! She did get upset that it was storming/raining when it was her turn to go, so one of the camp directors took her in the rain – how awesome is that?) and sang Baby Blue in the talent show. I asked her if Rob sang or if he watched – she said Rob can’t sing. 🙂 She also told me she went swimming, but only one time.

It made me feel so good to see how the counselors came to give the kids hugs and say goodbye to them. It was crowded so it was hard to see everyone – and Casey and Rob are ready to go! I wish I had time to talk to their counselors and see what they did and if they made any friends. I have so many questions, but the most important thing is they had fun. Casey has already asked when camp is next summer. Rob won’t ask, but he’ll be ready to pack when I tell him it’s time.

Today, we got to go to a birthday swimming party! Andrew is a young man whose mom worked with Casey and Rob a few years ago and he met them. He turned 14 this week and asked if Casey and Rob could come to his birthday party. It was going to be at a pool near our house that we haven’t been to, yet. To be honest, I wasn’t sure about going, but knew we needed to try it.

We went early before the pool got crowded (though, it never did today!) and they both got right in the water. I wondered how long they would last, as it is just a pool and doesn’t have water spouts or anything that Rob likes. We were there for over 3 hours! And really, the biggest reason we left wasn’t them, but that it began thundering and Casey does not like storms.

She got to have pizza and cupcakes while Rob enjoyed the almost empty pool. And – he was swimming! He kicked off the wall, kept his head underwater and was using his legs and arms. I’ve seen him kick before, but never use his arms, too! Maybe someone at camp helped him? I don’t know – I only know that every time I tried to show him, he ignored me. 🙂 He had a small ball and played with it for a long time. Both of them played catch with Andrew, a friend of his and his mom, Tory.

It was so much fun. “Typical” families rarely think about a birthday party like a family with special needs does. I hoped that Rob wouldn’t be too loud and disturb people who were trying to relax. (He did start repeating his favorite sandwiches from different restaurants and I asked him to use a quieter voice, but I don’t think he bothered anyone.) I hoped Casey would not help herself to anyone else’s coolers (yep – that’s happened many times!). I hoped she would be okay leaving early, if he needed to.

I hoped she would be patient for the “birthday” part of the party. I hoped he would last long enough. I didn’t want their quirks to ruin Andrew’s party or disturb other guests. Casey joined the birthday part, but Rob chose to stay in the pool and that was fine. My little weather man told me it was “stormy” and the sky was beginning to look dark, so we left soon. I can’t wait to take them to the pool again!

I wish it was always as easy as today was. Andrew is a special young man to have invited them to his party and his family was very welcoming to us. That’s not always something we can be sure of finding.

I truly hope that everyone who helped care for Casey and Rob and make sure they had a safe, fun week knows how much I appreciate them. I can’t always find each of them to say thank you, but they are in my thoughts. It does take a village to raise children (and adults! 🙂 ) and they are all part of our village!

Autism and a Week of Camp

Autism and a Week of Summer Camp

The day Casey and Rob have been waiting for has finally arrived! I just got home from dropping them off at camp until Friday afternoon. I don’t know how often Rob thinks about going to camp – he’s pretty easy-going – but Casey has been reminding me since we got home from our vacation.

I know Rob looks forward to camp. Friday, I told him he would be going today and he ran to his room, grabbed his cowboy hat and packed his swimming stuff. He was ready to go! Yesterday, when he saw his blankets washed and packed, he decided to pack his clothes, too. Socks, underwear and swimming clothes. That’s all. I asked if he thought he might need some shirts and pants, but he didn’t seem too worried about it. It took us about 3 minutes to get his clothes ready.

Casey, on the other hand, has to think about things. It took her almost 10 minutes to decide which socks to take. (I know this is an important decision, but still! 🙂 ) She didn’t care about what shorts she took, but everything else was a big thought. I always write their names on their things before we leave home and when I sat down to write Casey’s name in her shirts, I discovered her name was already in all of them. She remembered what shirts she took last year and took the same ones. Anyone else remember what they wore a year ago? I’m not sure I know what I had on yesterday!

They were so ready to leave. I’ll admit – I always have second thoughts about them going to camp. I love the camp and the staff and the volunteers, but it’s hard to be without them for a week. I’m so grateful for the break and I know they are safe, but it’s still hard to say goodbye. Rob leaned on me for a second or two but really didn’t care that I was leaving. Casey smiled her sweet smile and told me “barn? animals?” I had to remind her not to leave her group! She was NOT allowed to go to the barn alone! (She has made this little side trip twice – Mom is not happy with her!) She gave me a hug and told me bye and went off with her counselor.

It’s hard for another reason. This week of camp is for young adults with disabilities. Some have Down’s Syndrome. Some have autism. Some are in wheelchairs – all types of young people and they are all happy to be there. It’s hard for me to listen to the other campers excitedly say hi to their friends they haven’t seen since last year.

They yell hi to their counselors and talk to each other happily. And I see Rob off by himself grinding crayons and Casey sitting in a chair. They are both happy and doing what they want – I know that. But – it’s hard. I wish they were able to join in. I wish Casey was giving a “shoulder hug” to someone from last year. I wish Rob was talking about Power Rangers or the Wizard of Oz with someone. I wish I knew if they even cared that they aren’t interacting as much as the other campers.

There are so many things I wish I knew – just like every other autism parent. Maybe someday, I’ll know the answers. Maybe someday, Rob will talk to his counselors as he grinds crayons or rips cardboard. Maybe someday, Casey will be excited to see girls from the year before.

For now, I’ll keep wondering and worrying. I have the schedule for the week. I see swimming every day – Rob will love that. I see a talent show – Casey will love that. (I wonder what she will sing – I know she will want to be in it!) There is a campfire one night and an outdoor movie – both things they enjoy. I know that Friday, they will both run to see me (actually, Casey runs TO me – Rob runs BY me! :)) and they will be happy to be home. And I’ll be happy, too.

Because no matter where they are, I’m first a mom and it’s hard to be just me sometimes. I haven’t made many plans for the week. Shopping with Mandy. Maybe a casino. Writing. Playing with Blue. Eating a hot meal or two. Going to bed when I’m tired instead of when they sleep. 🙂 Simple things – but those are the things that truly make me happy! 🙂 🙂

Autism and a Happy 4th of July!

Autism and Happy 4th of July

I know it’s a little late to be wishing you a happy 4th, but it is still the holiday weekend and last week, I was too excited to share all about our trip to think about the 4th. Casey, of course, reminded me often in the days leading up to the holiday. You know how she loves her holidays! It’s not her autism – it’s just her. I love holidays, too – she got it honest. (Though, I don’t tend to be quite as obsessive as she is over details and plans! 🙂 )

She asked about going back to Sesame Place several times (She will continue to ask. Rob has not said a word about going back to the ocean, even though I know he absolutely loved it!) and wants to written on her calendar. When I wouldn’t do that, she wanted our July 4th plans written down. She insisted on a cookout and fireworks.

That’s easy enough. She doesn’t care about having a big, elaborate cookout. Hamburgers on the grill and baked beans are enough to satisfy her. She also wants sparklers, poppers and to go see fireworks. Again, Rob could care less. He just sits and lets her make all the plans for us. 🙂

This year, our town made plans to do the fireworks on the 3rd, in case of bad weather. ( I don’t know about you, but this has been quite a summer for crazy rain/storms where we live!) Casey was not thrilled with the idea of the fireworks not being on the “right” day, but she didn’t get upset. She just kept reminding me so I wouldn’t forget she wanted to see them.

And here again is a difference between them. She will constantly remind me to take her to see the fireworks, but he never asks. But – when we get there, he is the one who truly enjoys watching them. (We can see most of the fireworks not far from our house, so we don’t go into the crowds – it’s easier for both of them to not be close to the loud noise!) She sees one and is done. She can check it off her list of requirements for the 4th and is ready to go home to bed. He wants to stand and watch them.

On the 4th, Mandy and Cory, Grandma and Grandpa were going to come and have supper with us. I had already bought the required sparklers and poppers. I even found a cute headband for Casey to wear and she had a new shirt that she called her 4th of July shirt. (Tho, she didn’t wear it that day – no idea! ) She watched me bake brownies and cookies and made sure I made her favorite pasta salad. She reminded me all day that we were having a cookout. Rob never said a word.

When it was time for everyone to come, Rob came outside with me. She wandered out in her slippers (you can’t wear flip flops at home – you have to wear your winter before bath slippers, with patriotic socks, of course! 🙂 ) and sat in the swing. After we ate, Rob went back to the AC, while she waited patiently for sparklers. She doesn’t want to wait for dark, but that means her bath schedule will be changed.

Rob jumped at the thought of sparklers and ran back outside. Again, he never mentions them like she does, but he enjoys them more than her. I light the sparklers from a candle and hand to each of them. Casey squeals ouch whenever a spark gets to close to her. Rob holds the sparkler carefully and grins. He never puts it down until the very last spark is out (I put a bucket of water on the patio for them to drop the used ones in) and is immediately ready for the next one.

Casey seems to be afraid of them, but she has to use them all. It isn’t possible to just say she is done and walk away. It is a tradition – you never stop while there are sparklers available. She popped a few poppers, too, even though she really doesn’t like them. But, again, it’s on her “list” of what to do for the 4th and she can’t relax and be happy until all of her items are checked off.

Finally, the cookout was finished. She had sparklers and poppers. She saw fireworks the night before. Now, now – she can relax and smile. She can happily sit in the swing and giggle. Until everything is done, she simply can’t enjoy it. She is too worried about not doing something. That’s the autism.

On July 5th, she got up and said she wanted a blue flag shirt for July 4th, 2020. She also expects a cookout, sparklers, poppers and fireworks – on the 4th, not the 3rd. 🙂 I asked if we could wait to plan next year a little closer to the date. “No.” She even told me what she wanted for the cookout. (She wants them same stuff for every cookout! 🙂 )

I hope each of you had a wonderful holiday and it was perfect for your family! Whether that means a big party or just your immediate family. A crowd and fireworks or sparklers in your own backyard. The 4th of July can be an especially difficult holiday for people with autism. Not only is their routine changed, but the noise of fireworks can cause sensory meltdown. So can large crowds. Lots of the “traditions” for this holiday can be completely opposite of what our families need.

Remember, despite what some people may say, doing what your child needs to be happy and safe is not “giving in” to them. Do what’s best for you and ignore others. They have no clue what your child’s needs are and if they aren’t willing to try to learn, they simply aren’t worth your anxiety.

Happy 4th weekend!