Summertime stimming and conversations with parents

Summertime in our house is so loud. It’s unbearably loud at times. I understand the need to stim, the happiness, the joy, the excitement. I understand that it is self-regulation and that it helps things. I know that it is important and that the problem with stimming is all in its perception. However, this house is loud.

This summer, Penny and Aiden are louder than Jake. This is partially due to Jake finally understanding and appreciating quiet and time alone. He has taken to playing upstairs in his room with his Lego without anyone else present. This is a major development. As he has now learned to read, he is also happy to sit and read his favorite books endlessly. So much quieter than last year.

But Aiden. Aiden is a yeller. A hollerer, and a stimmer. I still don’t know how much of what he does is learned behaviour and what is his own little personality. When he is mad he is instantly in tears and yelling at the top of his voice. When he is happy he hums. A loud, monotone hum that has no music to it, it is simply a loud hmmmmmm sound. It’s a happy sound, and it always makes me smile because I know how happy he is. We first heard it when he was super small and eating. He would hum that same sound, the exact same tone, while he happily ate. It was adorable.

Penny is learning some words. She can say Mom, Dad, Aiden, Kitty, more, hi, yes, and no. She also manages to vocalize her demands and objections quite clearly without words. She loves to pretend play, much more than either of the boys ever did, and she is super interested in playing dress-up. She is quite social, and super observant. She knows how to unload the dishwasher and clean the toys up. The boys are still learning those things. She knows how to put away laundry and work the iPad as well as anyone. She is obsessed with buckles, and needs them done up all the time. She seems to love doing them up as well as simply knowing that they are done up. She can’t leave a buckle unbuckled.  Currently, she enjoys walking around on her tippy toes and doing whatever her brothers are doing.

So I wonder, where on the spectrum might Aiden fall? Penny? Are they even on it? I don’t want them to face those struggles. And yet, I am not afraid of autism, it doesn’t hold the same intensity or fear over me that it once did. Rather, I wonder about them so that I might know them better, that I might support them better, and love them better. I wonder, because I know all the signs and live with an autism filter on my eyes 100% of the time.

Stuffed animals seated around the room, ‘watching’ their own personal ‘screens’

I recently heard a story a friend of mine tell, for a completely unrelated reason, about a little boy I’ve never met who gets so happy and excited that he bounces and waves his arms behind him. He’s very well-spoken; in fact, he’s almost like a little professor. Based on my experiences, I suggested that she mention to his mom that maybe he should see a pediatrician to be screened for ASD. My friend laughed, saying, there is no way she would want to be the one to suggest that to his mother.

I get that. I really do.

It’s a scary thing to say.

It’s a scary thing to hear.

But I’m now at a point where I am really asking myself, why? And how can I change that?

I asked Aiden’s preschool teacher four times over the past school year if she had any concerns about him. I asked specifics, did he socialize well? Listen to instructions? Make eye contact? I wanted to know. I will ask his kindergarten teacher the same questions. I am not worried about him. I am not concerned that he will turn out autistic. I just want to know what he struggles with so that I can support his teachers, work with him, protect his self-esteem, and help him build relationships. Exactly the same way I feel about Jake.

Penny will be two this September. If she all of a sudden develops regressive autism, I will be surprised. I would be sad, if I didn’t hear her call me Mom again. But it would not change my love, my hope, and my passion for her at all. I would, however, change the way I approach her struggles and her needs.

I want to be able to encourage parents that screening, that investigating, and that understanding their kids is a good thing. It’s doesn’t have to make you feel like a bad parent; it can actually help you to be a better one.

I think the fear comes partially with the feeling that someone else has to tell you. I wish that we could take that part away. The fear, and the feelings of judgement, inadequacy, and defensiveness. Autism Awareness campaigns just haven’t helped with that yet though. More than awareness, we need education, understanding, and acceptance, to the point where moms can talk about it in loving, kind, and accepting tones. And not just with other moms of children with disabilities.

In my house, we do stimming. We are loud. We hum, loudly, and we buckle things up. We love our visual schedule. All of us. I don’t know where we fall compared to other families. I do, however, wish we could encourage and talk with them.

The Sounds of Summer

The view from our seats at Safeco Field where we successfully took three children to their first Major League Baseball game
The view from our seats at Safeco Field where we successfully took three children to their first Major League Baseball game.  Go Blue Jays.

Okay. So next summer, I need to remember to set my sights even lower. For some reason, I figured that all of the amazing growth, the incredible year we had in kindergarten, would just continue into and throughout summer. I was not completely mistaken, but I had forgotten just how busy life in summer can be.

And this year there were three of them.

Penny is learning to walk. She still scoots rather than crawls around on the floor, quite effectively and happily. But now she is also pulling up on everything and working on walking while leaning or holding onto whatever is nearby. It won’t be long now.

She is also learning how to talk. This is amazing, and she mimics sounds that she hears as well as trying to make her own sounds for things. The boys were never this vocal as babies. She said “Mum,” for hours the other day, and is very close to da-da. It’s so fun, so special.

And oh my goodness. It’s so loud.

Apparently she has learned that talking is loud.

We are so loud.

Jake is loud. He has no volume control despite years of us trying to coach him to be quieter, softer, use his indoor voice, turn down the volume, etc. He just can’t help it. Now we know that he has auditory sensory processing issues, he hears everything at the same volume, and he can’t hear the difference in his own voice. So he’s loud. Okay. He’s loud and autistic.

Aiden is loud. Aiden was not always loud. And certainly, in a crowd he’s often almost silent. But here at home, that kid is loud. He wakes up loud. He plays loud. When he’s happy or excited, he shrieks and screams.

I get it. Kids can be noisy. And kids can be loud. I love happy sounds.

We are loud happy.

We are also loud angry.

And loud tired. And loud hungry. Loud when we are trying to have a conversation and our kids are loud. Oh. My poor husband. He isn’t loud by nature. He’s quiet. If anything, he hears too clearly, too sensitively. Sometimes even he is loud.

And so, Penny is getting loud. She really just thinks that is how it is done. And I guess, in our family, it is.

So here we are, all together, the five of us, for the whole summer.  The noise is a little insane sometimes. Okay, so the noise is a little insane almost all the time. I wasn’t prepared.  How do you prepare for that?  Try to take more two minute quiet breaks?  Try to store up peaceful thoughts to prevent joining in with the screaming?  I am naturally loud, I know, and I want to help bring down this noise. It’s difficult.

I whisper, hoping they come down to my level. I yell, hoping to show them how loud they are, or how loud I too can be. I use body language. Well, that’s just useless.  

Maybe I need more signs that I can hold up. Something like a red light, green light, only I would only ever use the red light. I’d be waving my red light around, hoping the kids would pay attention and remember that it means they need to quiet down. Right.

I am so looking forward to the start of school. I need the quiet. Summer is nuts!  I know my dear husband can’t wait to get back to his classroom full of teenagers, because there they are quieter than here!  So funny.  

I am trying to live in this moment.  Love this noise and these kids and this insanity without wishing it were calmer, quieter, or September. I’m doing alright at it, most days. But I have found that my calm and my presence in the moment is short lived. I need to work on it so I can stay here and enjoy it, even when it drags on and on and on.

Verbal Stimming

Jake loves to talk.  Seriously loves to talk.  This kid just will not stop talking.  I am thankful and blessed that he is verbal; when he was two, I wondered if or when he would start to talk.  By age three, I was relieved that he had a few favorite words and some very short sentences.  I would never have called him expressive, however.  Something happened though, between ages three and four.  Jake really started talking, and he has not stopped since.  There have been many, many nights when we have gone upstairs, late at night, to kiss his head while he slept, and marvel at how quiet he was, because it is never, never quiet here in the day.

I first wrote about his talking here.  I have been looking into the idea that Jake is a verbal stimmer (see below for definition).  I have watched him a lot.  When kindergarten started, he was chewing on pencils constantly, but I have never seen that at home.  I have never seen any other real stims of any kind, though (for example, hand flapping).  After his diagnosis, I started looking for them, but most of the stereotypical, obvious stims have never been a part of our lives.  I counted myself lucky, and moved on, but now I am taking another look.

He really just cannot shut up.

Not at all.

He is getting better at waiting until we are ‘available’ to talk to him.  But he often just goes off talking anyways, whether we are paying attention or not.  There are times every day when I ask him to just be quiet for a minute, just a second, so I can hear what his soft-spoken little brother is trying to tell me.  Thankfully, Aiden is becoming less soft-spoken all the time.  But the noise level in our house is insane.  Penny could sleep through a rock concert, I am entirely confident.  She is trained for it.

So what is verbal stimming?  It is a couple of things.  Jake finds joy in talking.  I don’t know if it is the sound, the feel of the vibration in his throat, the movement of his lips, or some combination.  But there are many times a day when he is just so happy to be talking.  Often way louder than any situation in our little house could possibly require.  This fits with what I have learned about stimming.  It is something autistics do for happiness—apparently, an incredible happiness that is self-controlled and almost impossible to restrain from.

The other thing about verbal stimming is that it can be calming and soothing for Jake when he is upset.  He could be upset by anything or everything, and he gets loud.  If he is upset because he sees that Aiden is hurt, I get a run-on, loud, lengthy, cannot-be-stopped-or-interrupted explanation of the event in super detail on repeat.  If he is upset because there is a noise that he is bothered by, he may cover his ears, but he will often also start singing loudly.  If he is upset because he is hurt, angry, frustrated, annoyed, or impatient, he will whine or cry, often with words.  He cries over things that seem like smallest problems and screams over scraped knees.  I have tried all kinds of things to help him calm down, from deep breathing to deep pressure to movement to distractions.  The most effective, and often the hardest for me to do, is to simply let him cry it out.  The more I try to get him to stop crying, the more frustrated he gets.

I found this description of stimming really helpful.

Sometimes stimming releases pressure—especially the good kind of stimming. Sometimes a stim will help us focus to block out invasive and overwhelming sensory input, becoming an essential coping aide.

It’s a type of self-soothing, whether one needs to be soothed because something is just too cute or because that ambulance siren is just way too loud, the root cause is essentially the same.

In my opinion, the question shouldn’t be why autistic people stim, it should be why do autistic people stim in such a specific way. Not every autistic stims, and not every autistic person shares all the typically autistic stims. I’m a finger waver, but I’m not often a hand flapper. I have a vast number of vocal stims, but I’m not usually a rocker or a bobber. I know hair-twirlers who rock back and forth. I know knuckle-crackers and foot-tappers who don’t wave fingers or flap hands. Every autistic is as unique as her own personal stimming lexicon.

Neurotypical people stim too! Some notable neurotypical stims include tapping fingers or feet to music, stroking the face when stressed, or rocking in a rocking chair.

https://kirstenlindsmith.wordpress.com/2014/05/16/stimming-101-or-how-i-learned-to-stop-worrying-and-love-the-stim/

A funny thing about that is that I totally get it.  While I don’t cry over Lego that just won’t stay together in super elaborate creations, if I am actually crying, it’s incredibly difficult for me to stop.  Once the emotions and sounds and tears start coming, the release is so powerful.

The Teenage Mutant Ninja Turtle Lego minifigures carefully lined up with some of the other favourites from our house.  (Photo credit, Jake)
The Teenage Mutant Ninja Turtle Lego minifigures carefully lined up with some of the other favourites from our house. (Photo credit, Jake)

Autistics have been very helpful explaining stims and how important they are.  One, Anabelle, says this,

I benefit greatly from vocal stimming. It keeps me more in more control of my physical body when I am overcome by miscommunications, anxiety, and too much of everything.

BUT it really does attract a lot of attention.

When I vocally stim, there isn’t much warning, and I have very little volume control. I try hard not to be too close to someone if I think I am going to be loud, for the sake of their hearing. But it’s difficult for me to control.

http://www.anabellelistic.com/blog/way-to-stim-wednesday-vocal-stims

I watched this video called, “Ask an Autistic – What is Vocal/Verbal Stimming?”  It was amazing.  If you have a few minutes, please watch it.  It’s well done, hopeful, encouraging, and so, so good!  I loved so many things about this.  One was how lovely this speaker is, Amythest Schaber, how sweet and autistic.  Especially if you don’t know many autistic people, this is a nice example of how real and nice they are, not strange or scary!

https://www.youtube.com/watch?v=WEB7nGvJt7I

She does a very good job explaining why it is important to allow verbal and vocal stimming, and how the real problem with it is when it is annoying for others who are around.  She suggests that we need to change our perspective rather that stop the stimming.

I agree with her.  Completely.  On principle.

Jake’s non-stop talking does not hurt him, nor does it hurt anyone around him.

But there are so many times that we are all going crazy!

I know a few things that will help this situation, and the more I think about it, the more I realize they are powerful and possible.  The first and most important thing is that we need to be less bothered by it.  Truly, my husband and I can text each other if we really need to.  But if I can recognize that it brings Jake joy, calms him and helps him, then I will be more patient, and I will be happy that he is doing well.  If I can remind myself that it is okay, that all is fine and it is his way of coping with stress or creating and expressing joy, I will find peace and joy in that.

The other is creating some boundaries.  I can build on the ‘not available’ idea by creating times when it’s not okay to talk constantly.  I can make a social story about watching tv with dad and how he likes to hear what the tv says.  I can create some practice situations where other people are trying to talk and the noise Jake is creating makes it difficult.

Finally, I have really noticed that Jake loves music.  I hope to write more about that some time soon.  But when there is music on, even softly, he listens, he sings, he dances, and he is calm.  He does not talk nearly as much.  I also love having music on in the house, so I can try to remember to use this when his constant babble becomes overwhelming.  It may be time to just change the sound in the house to music rather than wish for a quiet that will never come.