Autism and the End of Mom’s Patience

Autism and the End of Mom's Patience

When I was younger, I was impatient and I had a temper. While I had learned to mostly control it before I had kids, having them and living with autism taught me even more that most of the stuff I got upset over really wasn’t any big deal. I do still have very little patience for some things (slow drivers and rude people!). I let most things slide. It’s just not worth getting upset over.

That being said, last week, my little angels tried my patience. I’ll admit it (even though I know it’s politically incorrect and I’m not supposed to and all that happy crap) – they got on my last nerve. And before anyone thinks it was because of the stay at home order, nope. They were just being turkeys.

Tuesday, Rob started his “song” and repeated it for more than 8 hours. He didn’t seem to be upset – he was just talking. Honestly, I didn’t really hear him. I’ve gone deaf to his “long black train” phrase most of the time. It’s just part of him and what he needs to do to stay anxiety – free. It’s his verbal stim. When he gets loud saying it, I know something it wrong – usually the weather. So I basically heard it about 2,000 times that day. But, I really didn’t hear it, if that makes any sense.

We went for our walk and did some fun things Wednesday morning. About 2:00 that afternoon, he started again. I didn’t pay any attention to him until about 6 and I’d had enough! I just couldn’t take hearing that damn phrase anymore. I tried everything I could think of to distract him. Again, he didn’t seem to be upset – just stimming on the words. By 8, I was ready to scream or cry. He took his shower and had a snack and I thought maybe it was over. I had about a 20 minute break before he started all over again.

The thing is, I have to stay calm when I’m talking to him about it. I tell him he is hurting Casey’s ears and I’ve heard it enough. If I raise my voice, he immediately starts getting louder because his anxiety has gone through the roof because I am mad. I truly do know that he simply can’t help himself sometimes. He is just stimming – just like others flap their hands or spin things. But – after 8 hours of it the day before and almost 7 hours that day, I was done. You cannot imagine how done I was. I never thought it would end. At 9:15, I told him good night and that I loved him, thinking there was no way he would sleep that night. It was like someone flipped a switch and he was asleep. Silence. Oh my God – the silence. I actually stayed up later than I usually do just enjoying the silence.

I was really worried he would start in again on Thursday, but while he said it in the car coming home from the park (he has to say it when we get in the car to head home from anywhere) he stopped when we got home. It was truly amazing! I told him thank you for no long black train – he looked at me like I was crazy. 🙂

So everyone went to bed Thursday night and about 1:30, I woke up to discover Casey’s bedroom light was on. Usually, if I turn it off (there is a switch at the bottom of the steps) she jumps in bed and stays there. I turned it off, heard her jump in bed and went back to bed myself. About a half hour later, I rolled over to see the light was on again. And I was not happy. I went up the steps and told her to get back in bed – NOW! She giggled and did it, but I heard her (her bedroom is right above mine) dancing and thumping around all night. She was downstairs before 6:15 listening to music and giggling.

So we had to have a discussion about where she is supposed to be when it’s dark. “In da bed!” Yes, Casey. You cannot dance around all night. “Reagan!” Yes, Reagan is coming today. So – I don’t know if she was just so excited about seeing Reagan or the weather was messing her up. But – when she decided to sleep on the couch, we had another discussion about how she was NOT going to sleep all day! 🙂

So, yeah, my patience was tried last week. I still don’t know the “why” of either of the days. I have no idea why she didn’t sleep. I don’t know why the second day of his song about drove me nuts when I barely heard it the first day. I am proud of myself for not yelling and losing my cool in front of them. I am glad I controlled my temper. (I was having a fit inside my head, though! 🙂 )

Everyone that knows me knows how much I love my kids. All of them are my world. And sometimes, they drive me nuts. Parents are made to believe that they should never admit their kids are driving them crazy. We are supposed to shine rainbows and unicorns all the time and be happy, happy, happy. But – you know what? Being a parent is hard. Being a special needs parent is hard. And being a parent during a virus-driven-stay-at-home order is the toughest of all.

It’s okay to admit your kids make you want to scream at times. It’s okay to not care if their school work or chores get done that day. It’s okay to just say the hell with everything and just make it through the day. Just because they drive you crazy doesn’t mean you love them any less. So, give yourself a break. Take a breath and have a piece of chocolate or a glass of wine. Tomorrow is another day. 🙂

Self – Stim… It’s not just for People with Autism!

Self - Stim and Autism

Many years ago, I attended an Autism Society of America conference in Chicago.  If you have been to many conferences, or any type of long meeting, you know that by the end of the day (or in this case, end of the second day!) you are just putting in time till you can leave.  You are tired of sitting and in my case, new friends were going to take me to Navy Pier as soon as the day was over.

The last speaker of the day was Dr. Jim Ball.  I’ll be honest, even though he was a behavior specialist and I knew I needed the information, my main thought was wondering how long I needed to stay in order to get my full day certificate.  Let me just say this – an hour and a half later, I couldn’t believe his time was up and I had to leave!

When Dr. Ball stepped up on the stage, his first words were something like “Every one in this room has a stimming problem.”  The whole place (about 300 people) looked at each other like “Oh man – this guy isn’t gonna be worth listening to.”  Then Dr Ball asked, “How many of you, right now, are tapping your pencils?  Twirling your hair? (ME!) Swinging your foot? (also me!)  Those are all stimming behaviors – only socially acceptable ones.”

He had my attention and everyone else’s in the room.  I had never thought about what I did to control myself in public or when I’m bored.  When my hair was longer, I twirled it around my fingers as I concentrated.  I swing my foot all the time.  I rock back in forth (though I think this one may be learned from watching Casey!)  I play with my phone.  I twist my fingers together.

Who else taps their shopping cart while they wait in line?  Anyone else fold their legs or feet under them while they sit?  Some people crack their knuckles.  Others tap their toes.  Still others swirl their drinks in their cups.  And I know many of you stare at your phones.

So why in the world is it ok for us “normal” people to self-stim and it isn’t for people with autism?  I know people who chew gum all the time (deep pressure on the jaw!) but if you see someone with autism with a chew toy, it is inappropriate.  The reason is simple – we have learned what it socially acceptable and people with autism have not.  Or they have and they don’t care.

When Casey has to wait for anything, she sways back and forth, gently.  She doesn’t bump into people and isn’t very obvious about it, but she needs that comfort.  People often stare at her so many times, I join in.  Let them look – my daughter and I are having a quiet moment together and I don’t care what they think.

Rob is a little more obvious about his rocking.  He is a lot taller than her so that gets attention, anyway, but he also hums while he rocks.  And his rocking isn’t a smooth back and forth – he jerks around at times.  But again, he isn’t hurting anyone and I can stare right back at anyone who dares to stare at him.

I’ve heard people say that we need to teach people with autism to be more socially acceptable in their stimming.  I want to know why.  Personally, sitting near a woman who is clicking her nails together to stim drives me up the wall, yet, that is acceptable and rocking isn’t.  Who decides what is ok and what isn’t?

As a parent, we want our kids to be accepted by everyone, but the reality is, even if your child was typical, there will be people who do not accept him/her.  I know there are people who, for reasons I don’t even know, I don’t like.  And I’m sure there are people who don’t like me.  So why do we fight so hard for our kiddos to give up a stim that they need?

Your child doesn’t need everyone to like him/her.  They need your love and your acceptance.  There are some stimming behaviors that should be curbed when they are in public, but you can teach them that that behavior is a “home” stim.  No, it isn’t easy, but neither is teaching a child to use a potty and we do it.  Be consistent and be kind.  Your child can learn!

After listening to Dr. Ball that afternoon almost 20 years ago, my thoughts on self-stimming behavior have changed drastically.  I don’t try to stop the kids, but redirect if needed.  Most of the time, I’ve been lucky that their stims have been odd looking, but not inappropriate.

Flapping hands and twirling around seem to be big stims for many people on the spectrum.  It may be hard to watch others look at your child, but your child probably isn’t paying any attention to them anyway.  The stares are hurting you, not them. Stare right back.  Glare if you want.  Remember, people stare at typical kids, too.  It’s just part of being a rude person and you can’t change it.

I heard some parents complaining last week about a child at the table next to theirs.  The little one obviously had a disability (not sure autism, but probably) and was staring at an iPad while waiting for his food.  He wasn’t moving around, he wasn’t making a sound.  This couple was making loud comments about parents who can’t even take their kids out in public without giving the child something to entertain themselves.

Their comments went on to say that they never had to take electronics for their kids – they were taught to sit and wait. And blah blah – you know the drill.  Meanwhile, as they are complaining about this boy and his iPad, they are both staring at their phones.  What the heck is the difference?  Besides the little boy wasn’t bothering anyone and their comments were mean and hurtful to the family?  If you can sit at the table with your phone, then someone else can use an iPad.  Pretty simple to me.

I bet even as you read this, you are stimming.  Think about it.  Are you playing with your hair?  Rubbing your leg?  Tapping your foot?  It is ok to self-stim.  We just need to help our kids find a stim that helps them – and often, they find it themselves.  I never taught Casey or Rob – they just do what they need to do to feel comfortable in an insane world.

Self stimulation can occur for many reasons.  We can do it to “wake” up or to calm our bodies.  It may provide some sort of internal pleasure.  Casey and Rob often use stimming to calm themselves when they are becoming overwhelmed.  The faster Rob rocks, the more overwhelmed he is getting and I know I need to remove him from the situation or provide deep pressure to help calm his body.

You may consider talking to a behavior specialist if your child’s stimming seems to be out of control.  I have listened to Dr. Ball several times and I am still learning from him.  His presentations are never boring!  Your school district can contact a behavior specialist (districts often have behavior specialists contracted for services throughout the school year) if you feel the need.  Your doctor may also be able to recommend one.

In the picture about, Rob is not imitating the boy from Home Alone.  Squeezing his jaws have been a favorite stim of his since he was a toddler.  The tighter he squeezed, the more he needed to calm down.  He wasn’t always upset – sometimes he just got too excited and needed to calm down, like in this picture.  Coloring eggs as always been a favorite activity of his.

Remember, don’t try to stop the stimming without replacing it with something else.  I can almost bet that your child will find another stim – and it may not be something you want to deal with!