Learning to Play: Come out, come out, wherever you are!

This is a two part post about the journey to helping Brady learn to play and be with people. A common challenge for children on the spectrum is relating to their peers, enjoying school experiences like recess and getting to know classmates. This post tackles some of those puzzling delays and how best to support your child. I hope that reading about our story will give you insights of your own.

Brady didn’t play with us. Or anyone.

He didn’t socialize or relate. It was hard to put your finger on it because he was talking so clearly, if we were following a routine he participated peacefully. But if the routine deviated or something happened that he didn’t expect,  he melted down.

His meltdowns were constant and passionate. Naturally, they ruled me. I didn’t take him places if I thought he wouldn’t like it. This was a long time ago, but since it was the beginning of his life, it was all either of us knew. My life was our house, the yard and my immediate family. He liked his cousins but he did not play with them.

You could imagine you were playing with him because you were doing a puzzle together, or because you were doing art together.  You could say “give me the yellow crayon” and he would give it to you. And if I replaced an activity with something else he liked, like if we went from a lining up the dominoes to the ball drop, he was game.

He was acquiring language very quickly and wanted to know new words or to talk endlessly about a process he had seen, like a children’s show had an episode about a surprise birthday party. It was in Word World, and everyone had forgotten Dog’s birthday — or so he thought as he looked for someone to play with him. Dog came home and all his friends were hiding inside. They jumped out and yelled “Surprise!”. Cue happy theme music. Brady talked and talked and talked about that. He was Dog, we were the friends. He asked about it. I would say, you went to visit Pig, you went to visit, Cat (or whomever) and you are crying. He loved the details about how Dog was very sad then very happy. Naturally, I asked if he wanted a surprise party and the answer was always an emphatic NO.

He loved to read a Richard Scarry book that had a paper mill and showed lumber turning into paper. He loved the conveyor belt and the journey through the building. He spent hours over a period of years studying that picture and talking about the lumber mill. He loved a sequence about building a house, it had a frame and pipes for hot water and cold water that went under the street. He could not get enough of the idea of wiring.

He was three and he wanted to look at municipal pipes and manhole covers but heaven help us if we went to picnic or a parade. I thought I understood but I really didn’t. It was so unrelenting, this insistence on process. If someone would have just said “Kerry, he has a logical brain and he loves if-then, but he has no tool to understand spontaneity and he’s spending all of his time looking for order” I would have said, “You are right.” I also think when he was 1, 2, 3, 4, and 5, those pre school years that were so lonely and crushing because of temper and the search for order that his immaturity prevented him from stepping out of that place. His same age peers started off responding to family, then parallel play. The gulf between him and his peers was not evident until he went to grade school. Before that time, it could be explained away. “He’s so smart” or “He’s shy.”

That is what it meant when a developmental pediatrician says “socially delayed.” Brady was an extreme, but when I started to work in schools I could see that there were many children that did not pick up on cues from their peers. The common response to social awkwardness or social alienation is “figure it out” or judgement by peers that the child is annoying. That’s not helpful for the child. If they didn’t learn how to relate from the simple process of being in the world with other people they are forced to learn from mistakes, or by an epiphany or cobble together misunderstandings and decide on their own version of the truth.

In the meantime, the isolation and temper with Brady reminded me of events I had long forgotten. Sad memories piled up in my head, Brady and I were not so very different. Many of the things that he did not understand confounded me as well. I wasn’t a process loving mini scientist, but I was a dreamy, horse obsessed little girl who raged at my peers in grades school, mocked my peers in high school and then changed settings and jobs before anything caught up with me.

I went to three colleges for my undergraduate, I raced through grad school in one year and then moved 11 times in my early twenties around the DC metro area. I changed jobs 5 times, but i was the internet boom and easy to jump from project to project. I thrived in rapidly changing environments with lots of novelty but put me in a setting that required steadiness and productivity and I was bored and useless. A little self knowledge would have gone a long way for me. I’m skewing it negatively now, at the time I found joy in many things, just not people. I did not relate to people very well. I think it matters. I wish I had a person who saw me for who I was and helped me close those gaps without humiliation or danger. But we didn’t recognize those kinds of challenges when I was growing up. Kids weren’t watched the way they are now, I spent lots of time outside playing after school, and in school I had good grades. I was always a social failure but it was just one part of me, and we didn’t talk about things like that when I was growing up.

True story: I remember when I was a little girl, I didn’t know how to get along with people, so I said outrageous things and seldom was honest because I noticed that people acquiesced when I lied. And I thought I was smarter or better than they were because situations changed based on silly things I said and everyone seemed to go along with it. It came from a place of innocence but it turned into trait that became a part of me. I was frequently outrageous because it was how I talked to people.

I was shopping at Kohl’s with an overflowing cart. I  heaped discounted clothing on the conveyor belt at Kohl’s. I said to the cashier very dryly, “our house burned down and we lost everything, that’s why we are buying so much stuff” I’d been that way forever, just saying stuff and not caring about how someone took it. I was so matter of fact, but she was horrified and gave me a huge discount. That was a moment for me because I felt bad, like I had ripped her off somehow. But I knew I was joking, I knew I didn’t mean it. The cashier should have known it too. So I thought about it a lot and the things people said to me piled up in my brain, “people don’t expect you to say things like that” or “it’s not a normal thing to say, so of course she believes you.” I felt very ashamed and that was the end of my casual outrageous statements. It took a long time for my family to figure out that I was all done with that, people would say “you aren’t funny anymore” or try to prod me into comedy but I had a perspective check. My poor parents would have loved for that epiphany to have taken place when I was at home but it was not possible, I did not understand the limits to my perception and I didn’t trust my mother who was always correcting me but also also prone to global polite statements like “It doesn’t matter” or “that’s fine” or “that doesn’t really bother you as much as you say it does”. Because it DID matter to me, it wasn’t fine and yes, it did bother me as much as I said it did.

And so it went with me, but I really did not want Brady to waste so much time growing up, the way I did. With so much useless misery or random joys that were only mine.

When you have a child that is under 10 who has never played successfully with other children it’s not fair to heap blame on them and say “you are naughty” or “you are obnoxious”, isn’t it more likely that your child just doesn’t get it? That’s the compassionate perspective. Just like some kids struggle learning how to read or ride a bike, some kids struggle mightily with joining other children in play.

It was not appealing (or affordable) to close those gaps with interventions and behaviorists.  After all, he melted down with strangers and was at his worst with new people. How could I expect him to learn in a clinical setting with a behaviorist? Car rides put me around the bend because he cried so much, I could not imagine weekly appointments. Finally, I wasn’t really sold on the autism idea yet, I had not met a professional I trusted, so I tried to sort it out on my own.

I asked myself these questions:

  • What does Play look like to my child?
  • What does Play look like to me?
  • How do I get him from where he is, to where I want him to be?
  • How can I do this, while making him feel safe, accepted and competent?

One of the most beautiful things about children is they tell you the truth about themselves. Through their responses to the world, they give you a window into their growing brain.  One of the sad aspects of the early part of the autism journey is forgetting the things your child likes and focusing too much on the parts that make them different from other children. As your child matures, it can hurt how they see themselves. The negativity will new unnecessary problems if they start to see themselves as broken or less than.

So, let’s start with getting to know your child through his strengths and his truths. Respectfully. This is a move towards acceptance. Ask yourself,

  • What is my child afraid of?
  • What do they turn to when they need quiet?
  • What do they want more, more, more of?
  • What delights them?

He thought boxes and lines and color were beautiful. that’s what I had to go on. So I used geometry and design to draw him out and get to know the real Brady.

Because I had an extreme child, I saw that children give you a map through their toys, their play. I curiously observed the play of hundreds of kids while I worked in the library, wondering about the mystery of play and my own socially isolated son.

in the beginning, my boys did not play well together. It had to have lots of structure for Brady. I found common ground on ideas like mini golf and they both liked to build and roll the ball.

Kids fairly shout, this is ME! This is what I am made to do, when they play. The easiest tempered kids are the ones that enjoy so many things, and float from activity to activity. The more challenging kids have strong preferences. The toughest kids are the ones that stay in their shell and don’t reveal themselves except a little bit. They might be anxious, or frightened. These are the ones I’m talking about.

The first step is always, make your child feel safe, accepted and competent. Kids don’t learn when they are stressed, if you are trying to close gaps and bring about change, you must find a way to create that security.

When Brady was an infant, I’m talking a wee baby, and he cried and cried, I would hold up a checkerboard, and he would stop crying. I never forgot that. He liked it way more than I thought he would. That was my first insight to his truth.

I think if you pay careful attention to the story they tell you when they are toddlers, you will find the seeds of their success when they are grown. The challenge is navigating that part in the middle when they are in school and creating their idea of self. I passionately wanted to know who Brady was and draw out his voice. I lured him with play. It was not terribly social, but I was confident we would grow together.

Labyrinths, public parks, playing with cousins and his brother were the first successful forays into group play for Brady. He is newly age 8 here.

Let’s talk about social delays.  You can be socially delayed without being on the spectrum, but I don’t think you can be on the spectrum without having a different way of relating to people and the world. But just because his play did not look like his peers didn’t mean it didn’t count. He was still human, he was still curious and engaged. He was just engaged on a different level and I needed to get there.

If he wasn’t going to learn from watching people than I was going to learn from watching him. If I could understand him, then I could help him create an entry to build bridges to other people. He had to find out from playing with me that people are fun too, not just sensory experiences. People can be fun and valuable just as well as a ball drop or a domino rally.

again and again we went out to public, contemporary spaces and I pointed out the art and architecture and said “so many people like what you like” and “the person that designed this was autistic” I wanted him to link autism with beauty and order and fun.

Consider instrument play versus relationship play. (Links to book where I discovered this concept)

Instrument play is regarding people are interchangeable because the object is the goal. Whether playing a sport, or a hobby or going to a movie, the goal is the activity and not the person. Instrument play brings people with common interests together. It’s not bad, but it is limiting and as a child if you are only skilled with relating to people because of a common interest than heaven help you if you like things that are off the beaten path like choral music, maps and the periodic table.

There is a danger when you console yourself that your child is so smart. I know many adults who are very bright and lonely. What use is the periodic table to a 4 year old? Brady didn’t break any new ground. He just memorized pi and I thought, that’s not going to be soul satisfying for you. A large useless talent in a child is called a splinter skill. It detracts from normal development.  A splinter skill is not the same as being a prodigy. Brady was not a prodigy. He was just like a kid that was tilted all the way on the see-saw and completely out of balance. He had a rigid sense of play and introducing novelty created enormous stress.

Relationship play is when you postpone a pleasurable activity because it will be more fun with a particular friend. Again, you need balance here. What if you are so intent on the friend that you never figure out what you like? Lots of adults are walking around with no idea what they are really good at, what resonates with them. It’s good to have special interests. However, Brady did not know how to cultivate that friend. And honestly, I’m not sure he even knew what he was missing. But there was plenty of time for that lightbulb to come on.

I needed language to describe what I was seeing at home--I was so confused, so overwhelmed. That’s why I’m writing it all down now. It’s cathartic for me and I hope my story resonates with someone like me, googling at home, wondering what path to take. The word “autism” was such a choatic, sprawling nightmare but reading words like “instrument play”, “rigidity”, “Splinter skill” I thought, that’s him, that’s my child.

We built a ball drop in the back yard with rain gutters, added sand, seashells, smooth stones and misters. This gave both boys lots of sensory play and companionship but on good terms. Montessori school was a great fit for both boys in preschool.

I started by looking at what Brady  liked. He liked strong graphics, he liked predictability. He liked logic and order. He liked music and color. He did not like new people or any people really. He did not like surprises or change. this is his favorite video from when he was 2, you can see the strong insistence on order and sequence here.

It became a matter of finding out what scared him and eliminating those things. And then finding out what he liked, really liked, and making that list longer and longer.

At home his play was very logic oriented –very if/then. Lots of memorization. Between 12 months and 2 years he built up a large vocabulary. He liked classical music, puzzles, colors, sensory toys. I relied on these toys to help calm and soothe him.

we played with lots of boxes. This is our angry birds set.

These are the things I did that did not work very well:

I joined mom’s clubs, I took on leadership positions, I tried to be a great hostess so that people would like me, would like US, so that my son would have someone to play with. I was that mom that you could drop your child off at while you ran errands. I was so eager to give him chances to play, to make friends. I reinvented myself over and over, but at the base of it, he remained the same. I was burnt out from all the free babysitting where he melted down behind a closed bedroom door. Max was 2 1/2 years younger but he ended up playing with the kids that I brought over for Brady. I became quite the little camp counselor. And wasted enormous energy getting nowhere.

I  spent hundreds of dollars on toys. I bought anything that I thought he might play with, and imagined him sharing it with a friend. He kept to his blocks and marble runs, puzzles and blankets.  I gave away the Imaginext, the Geo Trax. We had a good run with My Little Pony, he memorized the ponies and the songs but did not play with them.  I decided he liked the ponies because they had their personalities written on their flanks like a sign. He wished we all wore signs saying who we were and what we were like.

The tide started to turn when I:

I borrowed a child development textbook from the library and I read about Play. I’m not going to rewrite it here, but if you are a nerd like me and can manage it, spend a few hours and read about the mechanics of play. If  you catch yourself blaming other children for being mean or unkind, read about play and look at it dispassionately. I don’t remember what the exact book was, but I remember it was very helpful to start breaking down play into discrete parts and figuring out goals.

If your child fails to make friends and get along socially, it is not because everyone/the school/your town is so mean. It’s not because they haven’t had a chance to play, or don’t know anyone and it’s not about the toys. But it might be because they don’t comprehend people and how to join play.

Next steps:

  1. Make your child feel safe, accepted and competent (in our case that meant lots of routine and very few visitors)
  2. Remember that progress occurs through area of interest (so what does your child like?)
  3. Read about child development milestones tied to play and socialization to get a language for what you are trying to cultivate
  4. To read about the patient path to friendship, follow the link to this post, about our experience with Play Therapy. It has a happy ending.
  5. Remember that there are no hopeless cases.

Brady and I when he was 3. We are visiting his favorite kinetic sculpture (haha) and I’m a few months along with Max.

 

 

 

Meltdowns: Tips for kids on and off the spectrum

Meltdowns are a reality that I’ve lived with front and center for years parenting my sweetie. Working in a school helped me to understand that many children struggle managing large feelings. In reality, most people struggle with temper. It is ordinary.

Temper manifests as either crying or angry outbursts. People don’t like visible displays of temper, it’s  upsetting. It distracts from the group, it brings people down. It’s unwelcome. In our increasingly crowded and public world, self-control and maturity are assets.

Temper is part of the human experience. You don’t want to not feel. Feelings are not bad, its what you do with the feelings that is bad. What happens when you stuff your feelings? Over eating, depression, addiction. Or giving in to temper? Broken relationships, shame. So what do you do?

I had a friend who told me once, “Feelings aren’t bad, you just have to walk through the whole thing.” I think of that often–she said “walk through” not work it up, not stay there and hash it out endlessly. Move through it. What did Winston Churchill say? “When you are going through Hell, keep going?” That.

Mr. Rogers, the great voice for compassion wrote that when he was angry, he swam or played the piano. He still had temper. But he learned to not take it out on people. He recognized it and directed his energy towards something that didn’t hurt himself or others. I want my boys to recognize their temper and manage it, not be led by it.

while Brady was a toddler, I read a ton of Mr. Rogers. It really helped me keep my compassion when I was exhausted and overwhelmed.

So let’s talk about temper. A foundation of our parenting is on the topic of Temper. I started using baby signs with Brady when he was 9 months old, when he was older and did them back to me, the three he used the most were “Suprise”, “Hurt” and “Help.” It made me sad that those were such common concerns for him, it made me glad that at least I knew.

Everything surprised and scared Brady. If I stood up and walked out of the room, he would burst into tears. I am not joking when I say I have PTSD from the amount of crying and distress he expressed as a infant, toddler, preschooler and kinder. He clung to me and I felt so frustrated that every trivial event that involved people seemed to send him over the edge. It defied imagination. I watched other kids playing, falling down, picking themselves up and playing more, while I held my heavy, noisy and sobbing three year old who still would not join a group and preferred puzzles to people.

I’m not trying to throw Brady under the bus, I know he might read this. I’m simply pointing out that meltdowns were one of our top parenting challenges. I hope our journey helps your less extreme child–because honestly, this is something most of us don’t have words for–you can’t assume that they will “just get it” or “be good” or “figure it out.” Many of us don’t.

Crying, distress, this is “fearful temper.” Sometimes people forget that fearful temper is as strong as angry temper. Children with fearful temper stuff their feelings of sadness or anxiety inside as they mature. They become quieter, but they still have those large feelings unresolved. You don’t want that. It’s so much better to understand temper so that you can manage it and it doesn’t manage you. I’m writing about children but honestly, think about adults in your life that likely were taught to “suck it up” or “stop crying” or close down in the face of criticism when their feelings burst out of them.

The other side of temper, is angry temper. I don’t need to describe angry temper. Think about temper like a wave. I had a surgery in high school, they rebuilt my chin. It was pretty nasty. My face swelled up and my nose disappeared–I was covered in bruises and resembled a potato while my body was recovering. I had a morphine pump to manage the pain. The nurse told me, when it hurts, even a little bit, hit the button. If you don’t and you wait, the pain will be too great and then we won’t be able to get on top of it. Pain is a wave. Ride it or it will wipe you out.

The same is true for anger. If you can’t recognize it and address it when it is flaring , then you will wipe out and cause lots of collateral damage. So much shame and helplessness comes from melting down when you don’t understand why it happened or what to do. It changes you. It changes how other people regard you. You aren’t a person anymore, you are the embodiment of temper as people look at you and remember your outbursts instead of remembering how you are when you are calm.

What do we do? We talk about it. All the time. It’s a constant conversation in our house. We (my husband and I) talk about our feelings the way you might talk about the weather. I give my boys a language for what is going on. We talk about angry temper, and fearful temper. We say “Feelings come and feelings go.” We talk about what we like to do, so that we can keep in a good mood and sustain a disappointment or frustration without losing our minds.

We give them permission for their feelings. We don’t give them permission to take their large feelings and dump them in the middle of the room and trash everyone. It’s all about breaking points. My children know that if they have too many frustrating events in a row, they will break down. This is average. They have to keep their spirits up. They know they have to eat right. They know if they don’t have protein, their tempers will rile. If they are feeling sick, they are vulnerable to temper.

It is their job, just like finding their shoes, carrying their plate to the counter and feeding the dog, to be conscious about their energy and their day and make sure they are keeping their energy up. How do immature little kids do that? Well, they sure aren’t doing it when they are 3 and 4 and 5. They are just crying or yelling. But how I approach it is the same. I give them the words. That’s angry temper, that’s fearful temper, you didn’t eat lunch and it’s getting hard for you. How can I help get you sorted back to your best self, not your worst self. We all have a best self and a worst self. I accept their worst self, but I don’t want to live their worst self 24 hours a day, I want them to try to bring out their best and make good choices.

We talk about token management, we talk about being group minded. We talk about the specific things we love to do that make us feel good. We get excited when we can find ways to give each other time or an opportunity to do something that they like in particular. Max likes to play outside after school and kick the ball with neighbors. Max also likes getting to school early so he can play ball with his classmates before school starts.  The days that he has freedom and opporunity to mingle with other kids strengthen  him and set him up for success.

Max does not like it when I use a stern voice with him or have an angry face (naturally), it seriously scares him and shuts him down. He takes my tone much harder than Brady, so I have to be mindful of that when I am in temper myself. I let Max know that I recognize that he gets freaked out when I’m in a bad mood. He knows I respect his truth, that I’m trying to be my best self.

I struggle openly with my temper. By keeping the struggle visible, the boys are witness to all the things I do to manage it. I try to slow the pace down when I start feeling unraveled. I turn off the TV. I clean and I say, I’m cleaning because I’m grumpy and it’s better to be away from people right now, I’m not fit for people. I need to sort this out. Looking at my clean bathroom or laundry restores my temper. Or I walk at night and listen to a book.

When Brady’s mood is flagging, he knows his temper is coming out. By then it’s not so helpful for me to chime in with all my talky-talky but at least I’m not mystified. It’s temper. We will get to that later. We can have an honest exchange about what to do differently–because self control is the work of his childhood and it takes time. We talk about being average alot. It’s average to have temper–we don’t say we are afraid of him or his anger. That would only make him afraid of it too.

Recognizing true feelings gives him dignity. It’s empowering. He can say, “hey, I’m starting to feel worked up and anxious. I need to…” play some ball, ride my bike, cuddle in a blanket, put on some music and dance, go outside and yell at the sky. I need to get some tokens back because I am running out. I don’t want to lose my temper.

That is what it is all about right there. Self knowledge, this is my temper, this is what sets me off, this is what brings me back and most importantly, I don’t want to go there.

Brady likes me to walk him inside before school. He doesn’t want to get dropped off. Okay. It helps him get the day started right and at this time in my life, I can walk him to his classroom, so I do it. Brady likes to cuddle with his blankets and read to reset himself. He likes to swing at the park or swim. He likes to pet his dog. He recognizes that these choices give him good feelings and sustain him through the day.

 

Sometimes even sharing your large joys is exhausting. Realizing that we have different large joys and large distresses is part of growing up–and recognizing that shoving your large feelings all over the place is not always welcome. This is an essential part of parenting my child on the spectrum because I know he won’t just “figure it out” but it’s been very helpful to raise my neurotypical son the same way.

I hope this gives you some perspective on temper and helps ease meltdowns in your family. I’d love to hear from you about temper and how you regard it in your family.

 

 

 

 

If you “Lit it up blue” in March

If you “Lit it up blue” in March or have a puzzle piece magnet on your car. If you have a friend or a loved one with an autistic child, start reading about autism acceptance.

It’s awareness taken a step further. In 20 years, folks will understand autism better. But  I’m worried about the kids that are affected by too much “awareness” and not enough “acceptance”, my son, his friends, children that struggle socially but love the sensory world.

I’m not discounting the struggle. I’m not trying to make my child sound like a saint, I am trying to reclaim his childhood as his right and recognize that he’s a little person coming along and learning about the world. His way of learning about the world is very different from the way most children see things but that does not mean he is broken or sick.

We all have a value.

We are all fearfully and wonderfully made.

These are the gems:

TempleGrandin_2_605

Photo by Melanie Rieders

Autism as a facet of experience, not a limit –Harvard, March 2014

Writer Joel Rubinoff and his five-year-old son, Max.

David Bebee / Waterloo Region Record

Autism Advocates should promote acceptance, not fear

William Stillman

photo by Tim McGowan

Autism, A New Cultural Competency by William Stillman, Huffington Post

Aspergers: Why video games are not a problem (right now) in our house

I love to use art to connect Brady with the idea that LOTS of people like what he likes. I am sure Frank Lloyd Wright had a dollop of spectrum. He was too in touch with geometry and nature not too be on the spectrum.

I love to use art to connect Brady with the idea that LOTS of people like what he likes. I am sure Frank Lloyd Wright had a dollop of spectrum. He was too in touch with geometry and nature not too be on the spectrum.

I knew that video games were going to be the easiest part of my son’s life.

Everything with Brady is either Easy or Hard until we sort it out.

Video games are easy. People are hard. Science is easy. Small talk is hard. Math is easy. Showing your work is hard. Patterns are obvious. Social conventions are ludicrous.

Taliesin West in Scottsdale

Taliesin West in Scottsdale

When the choices are between easy and overwhelming, it is hard to move out of your comfort zone. That’s called “rigidity.” and I point that out to Brady when I experience it, or when he is demonstrating it. I’ll say, you are feeling rigidity about that, and it’s not serving you well. You are missing out. Sometimes he takes a leap of faith and sets his rigidity aside, sometimes not. But at least he knows what is holding him back. That matters to me.

If you are born with an autistic  perspective, then it is all you know. You are not aware there is another way. Think about that. That’s your truth. You can let the world teach you that other people feel differently about things. You can make mistakes. Experience social isolation. Become a leader— you don’t know how to fit in. Naturally you can either lead or you can be alone. But fitting in with the group is rare unless you work in tech or found your niche. Likely, grade school is not full of people that share your perspective, so you will have a cultural disconnect to say the least.

What can you do about that?

You can acquire some self knowledge from autistic adults who have been there and save some time.  Ideally, you stay innovative and fresh but you spare yourself some embarrassment. The best of both worlds. I hope that by teaching Brady manners, he can treat people with courtesy but hold onto his fresh viewpoint. It’s a tough path to navigate, luckily as Brady matures, I leave some of these decisions up to him.

These bins are so pleasing and alluring..and everyone thinks so. It is human to like color and symmetry and order. It is normal and average. Lots of people feel this way.  I do not seek to make my child feel more exceptional than he is. I want him to feel a commonality with everyone. He is average. He is normal. This is a good way to feel.

These bins are so pleasing and alluring..and everyone thinks so. It is human to like color and symmetry and order. It is normal and average. Lots of people feel this way. I do not seek to make my child feel more exceptional than he is. I want him to feel a commonality with everyone. He is average. He is normal. This is a good way to feel. This makes it easier to relate to new people.

What is it like to be autistic?

Imagine traveling in a foreign country, for the first time. Going into a new restaurant that caters to a different clientele. Like, maybe you usually go to Appleby’s, but you go to an Ethiopian restaurant. People eating with bread and their hands from a common bowl. And your brain slows down and all you see is the bowl. And people on the floor. And all the stuff that does not look like what you expected. And they are eating with their hands? What? No silverware?

You feel slowed down. That’s your brain processing all of the novelty. You can’t assume what comes next–how does that make you feel? Uneasy? Maybe you are nervous about making a mistake. Maybe you are confident and sit right down and bumble through it. Maybe you end up offending everyone. Maybe you shut down. Maybe you don’t even eat at all. And maybe you never go to that restaurant again unless you have a friend that likes it or someone makes you. Imagine if people important in your life where there and they expected you to just know what to do and when you did not do it the right way they ignored it but judged you. Or laughed at your? Or rejected you? Because how could you get so many obvious things wrong.

We play lots of cards in our family, especially when Butterfly visits.

We play lots of cards in our family, especially when Butterfly visits.

Have you ever attended a Catholic Mass as a non Catholic? That’s pretty terrifying. Sit, Stand, Kneel. What do I do? Do I line up for bread and wine? What no? Or maybe you do line up for Communion and find out later that is a big no no. Or worse yet, they put the consecrated wafer in your hand (but you don’t know it’s consecrated because you missed that part, noticing the light through the stained glass windows instead) so you put it in your pocket.  Ouch!

Have you ever had jet lag, and had to function? Or if you were pregnant, that ninth month and it’s August and you are DONE. That’s what it feels like to be overtaxed and overstimulated. We all have that feeling, just with an autistic person, it happens more frequently.

People with ASD are frequently overwhelmed in a new situation. Which leads to meltdowns.

Meltdowns are something that most folks are afraid of. The feeling of being unsure in a new situation is a constant–after all, you live in the sensory world. The social world is confusing. You don’t pick up the way to join in the group from watching other children. Body language is lost on you, unless you are trying. You keep waiting for someone to say what they really mean instead of hinting. And even if they do tell you explicitly, if you are overstimulated, then you might not be able to process what they said anyhow. You know when your child is excited, how they don’t listen. That’s what I’m talking about.

This is a small reason why, in a world when things are easy or hard, that your Asperger child comes home and gets on the computer and plays games. He needs a respite. It’s been a long day. It’s been one of those days. Or maybe he doesn’t know what else do to that is easy. Maybe his short list of things that are not effortful is too short for a kid that wants to play.

Max's love of bike riding infected Brady. Brady learned to ride a bike and then forgot, he did it so rarefly. Max learned and made it a Thing. Now both boys love riding together.

Max’s love of bike riding infected Brady. Brady learned to ride a bike and then forgot, he did it so rarefly. Max learned and made it a Thing. Now both boys love riding together.

True Story: I worked for a tech company, I had to book travel tickets for my team to fly to the West Coast. I was 25, had a masters degree and had a good mid level job. I had never booked tickets before, but said sure, I would do it. I researched and found the cheapest tickets to the West Coast. I think they were $176.00 round trip. Also, we changed planes 6 times. I didn’t mind. I liked seeing all those airports and I was terribly excited to travel. I thought it was awesome. I thought it was so amazing that I did not notice that my boss, who was a single parent and had a 60 minute commute at work was ready to kill me–she looked at her tickets and probably thought something very hostile about me.

She had good manners, so she expressed it by treating me with coldness. I did not notice. That’s pretty embarrassing to write, but it serves to illustrate a point. A point about being oblivious, about making big mistakes, about how I should have known but I just didn’t because I looked at the world a different way, I always had. People said things to me like “you are so unique” I didn’t know what that meant. Sometimes it sounded good, over time it started to sound like a polite way of saying “Psycho.”

I ended up making an enormous mess of the whole thing. It took me years to put it all together, what I could have done differently. My brain is cluttered with memories like that. It is not esteem building to constantly learn from mistakes and seldom get it right the first time. It is not esteem building to look back on so many disasters, but it has made me a compassionate person. I’m the last one to judge someone. I’ve done too many stupid things myself.

Both boys love to run fast, jump, climb and do cool moves. They think we are going to do cool moves, I think we are getting our culture on. everyone is happy.

Both boys love to run fast, jump, climb and do cool moves. They think we are going to do cool moves, I think we are getting our culture on. everyone is happy.

As a parent, I’m eager to save Brady from learning the hard way. So we have the list of 10,000 things.

The list of 10,000 things is a family idea. We all have a list. That way, my kids are treated the same way. And like most lists in my life, it’s not written down. It’s just an idea. I told the boys, they have to do 10,000 new things before they are 12. Not a problem for Max, but for Brady a big problem. He only liked about three things and one of them was video games.

The other two were rules and numbers though so, he bit. When he was little and went outside his comfort zone, I could carry him into the new place and carry him out. I could make him do the thing he feared to do.

I said “This is distressing not dangerous”, I said “you can do hard things”,  “You can take things in part acts”

and I said “I am proud of you for trying, not for the result. It just matters to me that you tried.”

And when we do something new it goes on our list. And we have another list, of things we like.

If we are staying late at a party, I bring some cosy blankets. It's okay to be finished with social time and cuddle in a blanket. It makes it easier to be group minded when everyone is comfortable.

If we are staying late at a party, I bring some cosy blankets. It’s okay to be finished with social time and cuddle in a blanket. It makes it easier to be group minded when everyone is comfortable.

That list keeps growing.

Max likes:

  • exotic birds
  • being gentle with animals
  • trucks
  • planes
  • wheels
  • running super fast
  • roller coasters
  • the beach

Brady likes:

  • soft blankets
  • dogs
  • minecraft
  • shapes
  • patterns
  • water
  • color
  • recess because he can play with his friends
  • imagination games
  • P.E.
running around in a gang of kids...no, never, except when gang of kids are tamping down a hot air balloon and then look at you, running around with a gang of kids. reminds me a bit of throwing balls into the pool to get you to try something.

running around in a gang of kids…no, never, except when gang of kids are tamping down a hot air balloon and then look at you, running around with a gang of kids. reminds me a bit of throwing balls into the pool to get you to try something.

The list evolves, and they add to the list. I don’t say what they like or what they don’t like. I let them tell me. And if they don’t like it, they have to do it three times to be sure they really don’t like it. It might have been a bad day. We are very dispassionate about the don’t likes, but very interested and excited about the new additions. Like rock climbing! Hey! that is one more for your list.

building a backyard wipeout course, this is a constant game

building a backyard wipeout course, this is a constant game

We use the list for token management, when he is depleted and normally would sit down and play a video game, because of the list of 10,000 things, he has a habit of knowing he likes lots of things,

  • He can call Tyler or Evan or Thomas  or Adian.
  • He can swing at the park.
  • He can go swimming.
  • He can throw all the blankets and stuffed animals down the steps and make a nest.
  • He can do Suduko.
  • He can line up all of his crayons to match the spectrum.
  • He can do science from Bill Nye or Dr. Mad Science or Steve Spangler.
  • He can do parkour, rainbow loom, clash of clans, rainbow milk, bathe the dog, origami, spirograph, play perfection, play headbandz, write a secret language, spy on me….

I could have made this list 70 items long because we can easily think of that many things he likes to do. And that’s how we keep video games in perspective.

Because we have tried 10,000 things and some of those things are just as good or better than video games.

I’m protective about predicting what they don’t like, I was sure he would not like imaginative play, he never did it. He played with magnets and blocks and ball drops. Until he went to school and met Angelina. She taught him to play Puppy Power and Diamond Dog. Her made up games. She tells him the story and he goes along with it. He loves it. I was going to keep him home to do something and he said, no, I have to go to school because Angelina and I are playing at recess.
Never forget that your child is a child and they don’t know how the story ends, they didn’t hear all that scary stuff you heard about what they are supposed to be like. And if you let them feel Safe. Accepted and Competent, your Asperger kid will turn out to be a kid. Not a doomed child. A child. And it’s beautiful.

So get going on your list of 10,000 things. I want to hear all about it.

 

Of chestnuts trees and farmhouses, not cabbages and kings

When I was a little girl I lived with my mother and father and three sisters in a big brick farmhouse in south central Pennsylvania. The house was made of brick and American chestnut, harvested from the great chestnut forests of the East Coast. In 1904, when the house was built, 1 in every 4 trees on the East Coast was chestnut. But later that same year, the chestnut blight was introduced and decimated the forests. By 1950, only a handful of chestnuts remained. 4 billion were wiped out by the blight.

susan book

All words about the American chestnut are now but an elegy for it. This once mighty tree, one of the grandest features of our sylva, has gone down like a slaughtered army before a foreign fungus disease, the Chestnut blight. In the youth of a man not yet old, native chestnut was still to be seen in glorious array, from the upper slopes of Mount Mitchell, the great forest below waving with creamy white Chestnut blossoms in the crowns of the ancient trees, so that it looked like a sea with white combers plowing across its surface. Gone forever is that day; gone is one of our most valuable timber trees, gone the beauty of its shade, the spectacle of its enormous trunks sometimes ten to twelve feet in diameter. And gone the harvest of the nuts that stuffed our Thanksgiving turkey or warmed our hearts and fingers at the vendor’s street corner.   Donald Culross Peattie, 1948

front

Today the house is for sale. I copied some pictures into this post so you can tour it with me. I interspersed the pictures with the story of the glorious American chestnut. As Susan Freinkel writes, “How astonishing to think that a ‘perfect tree’ could dominate so much of the continent, suffer utter collapse in the space of a human lifetime, and then slip from historical memory as if it had never existed.”

from the road

We had a wide front porch and swing that creaked.

porch

Windows wrapped around low and broad, you could slide them open and see the rope pulleys on the inside. I straddled a window ledge and read books in the breeze.

front side porch

Or you could lay on the roof under the branches of the fir trees in our front yard. My sisters sunbathed on the roof. I poured trashcans full of water on unsuspecting guests walking to the front door. I was that kind of kid.

hallway

The attic had dormer windows, slanting ceilings and a cedar closet. My dad waged war against the sloppy habits of his daughters by taking off our bathroom doors if we did not clean our rooms. If we still didn’t clean, he would take our toilet seat.

den

In the basement was a root cellar with a giant wooden door that said 1904 in a brass plate. It was at least 5 inches thick and sealed a stone chamber that stayed cool all the time. I liked to pretend my sister was Fortunato and I was Montresor and we were going to the wine cellar to sample the Amontillado, a’la Edgar Allan Poe’s story.

gh_05

Behind the house, there are storm cellar doors leading to the basement. We don’t have a basement or a storm doors. My boys love to imagine a tornado coming and having to hide in the cellar. When we visit Pennsylvania we always find a house with storm doors and take the dark stairs to the cellar. I tell them scary stories and ask them to find sticks to put through the handles to keep the doors from flying off when the wind surges. 😉

bedroom

Our backyard had a springhouse, we called it the Pump House. On hot summer days, I read books on the cold floor. I can still feel that coolness as I type this post 30 years later.

If you drive along the Blue Ridge Parkway, look for the old stacked rail fences made out of chestnut. They are slowly replaced by pressure treated fences, but many old fences still remain.

If you drive along the Blue Ridge Parkway, look for the old stacked rail fences made out of chestnut. They are slowly replaced by pressure treated fence rails made of poplar, but many old fences still remain. (Note: I’m a fence nerd. I love to see the old fences made by the CCC when I go camping here in AZ. I love the evidence of people that came before me and how their way of doing things persists or fades as time passes. This is a major reason why very few people read my blog. I keep writing about fences. Or trees. Or blight.) Thank you for visiting me.

The yard was lined with evergreens. Our backyard touched the Butler’s backyard. Mr. Butler played the bagpipes. Sometimes you would find my stepdad sitting on stump out back smoking a pipe and calling “Play Scotland the Brave” to Mr. Butler when he started droning.

this novel features a character obsessed with restoring the American Chestnut and lots of great natural detail. On my to-read list.

When my family bought the farm house, everything was painted orange. The orange covered the pocket doors and window frames and molding. Our family peeled the paint from all the wood using heat guns to bubble up the paint and a paint scraper.

The-American-Chestnut-Tree picture

Chestnut made things. You could rock a baby in a chestnut cradle and bury a loved one in a chestnut coffin. You could wear leather gloves cured with the tannins from chestnut bark. You could eat chestnut bread and chestnut-stuffed wild turkey and bear fattened on the mast. You could fall asleep to a chestnut-log fire. You could roast wild, pure-strain American chestnuts on it. –T. Edward Nickens

To restore the wood to it’s true glory, my father took each door off the frame. He mounted them on sawhorses in the living room (where the grand piano is) and stripped the paint with smelly paint thinner. He scrubbed the ridges with chemical soaked rags before polishing them with a glossy varnish. He could tell you exactly how many doors and windows we had because he stripped and finished them all. It brings back memories to see his hard work 20 years later in these pictures.

paint-scraper

my best friend for a few years

The orange paint bubbled up and you could peel off ribbons if you were savvy about how you directed the heat bubble, expanding it to walk up the wood and then follow with your scraper, peeling the orange paint like ribbons the width of the scraper. I spent hours doing this, likely my parents spent weeks.

living room 2

The chestnut tree was called the Redwood of the East. This is a map of the chestnut forest range on the East Coast in 1914. When settlers arrived in Pennsylvania they said the trees were so thick, a squirrel could walk to the Mississippi without putting it’s feet on the ground.

PSM_V84_D557_Natural_range_of_the_american_chestnut

Fig. 1. Showing the Natural Range of the American Chestnut. The cross hatching shows in a general way the extent of territory covered by the chestnut bark disease in 1914. By 1950 the blight consumed the entire territory.

Our dining room had pocket doors made of five panel chestnut and a built in china closet in the corner. The pocket doors are recessed in the frame, but if you reach inside you can slide the doors out and close off the dining room from the living room.

china cabinet

When we go home to Pennsylvania in the summer we knock on the door and ask for a tour. I’ve taken Brady once and my husband once, but Max hasn’t been yet.

  Donald Culross Peattie writes beautifully about the natural world. If you like trees, add this book to your collection.

Donald Culross Peattie writes beautifully about the natural world. If you like trees, add this book to your collection.

kitchen

Pennsylvania is the prettiest place in the world if you like the four seasons.

dolly and billy

Dolly Parton’s Uncle Billy has spent 25 years working with the American Chestnut Foundation. The chestnuts are very special to the people of Appalachia.

The leaves turn red, orange and gold in the fall. We have beautiful white winters. In spring, crocuses come up from the frosty ground, robins chirp and in a few weeks after that first crocus, the trees are covered in blossoms. In the summer we stay up late, catch fire flies and wade in creeks.

mighty giants

There are creeks and shade trees and ferns and mossy rocks in Pennsylvania. Forgive me for romanticizing it, but the ground is not soft here in the desert, the leaves on the trees are like slivers compared to the broad glossy leaves in Pennsylvania. I hope you enjoyed a little trip down memory lane with me and found some new books to read.

To follow the story of the American Chestnut, join the American Chestnut Foundation. Or buy my old house. I wish I could!

sxc-hu-all81-under-the-spreading-chestnut-tree

NoteWhich of these books am I reading first? Susan Freinkel’s. The chestnut is a tree of the rural poor-especially of Appalachians, whose history is oral and bound to disappear unless passed down or recorded. And this, the recording of the mountain people’s stories, is one of the things that Freinkel does best….She conveys the deep emotional loss and financial hardship suffered by those living in the hills and hollers of Appalachia due to the decimation of their beloved chestnuts…These people were bereft at the loss of their forests and mourned the passing of particular trees like the death of a family member. Said one, “Man, I had the awfulest feeling about that as a child to look back yonder and see those trees dying. I thought the whole world was going to die.” Freinkel found these people eager to talk, seemingly grateful that someone, after all these years, wanted to know how they felt about losing their chestnuts.

Delaware to Connecticut to Rhode Island: Tuliptree, Beech, Chestnut & Cattail

Writing my own post about the American chestnut tree, I found this beautifully written post. I hope you like it too! Delaware to Connecticut to Rhode Island: Tuliptree, Beech, Chestnut & Cattail.

The 11 Best Pieces of Autism Parenting Advice

I googled for thousands of hours to uncover these gems, I hope they help you as much as they helped us! I wrote this article as a catchall to share with friends or friends of friends that are looking for our story of our success. I dare to call it success because at age 8, Brady is doing GREAT. He understands himself, he advocates for himself (sometimes), he is making friends and treating them like friends, instead of like interchangeable people that share a common interest. This is a very exciting year for us, because it is a validation of parenting off the map. There really isn’t a parenting map, but there is the illusion of the map. When Brady wasn’t keeping up with his peers, it was a scary time for us–and every horrible thing we read or heard sounded possible. It’s not scary anymore.

at the Phoenix Art Museum (free on Wednesdays)

at the Phoenix Art Museum (free on Wednesdays)

We began our autism journey when my son was a toddler and a teacher friend suggested he was autistic. I was distressed and in denial.  I was afraid of the word Autism and what it meant.

brothers

If you know one child with autism, you know one child with autism. Brady started talking at a normal age, he hit many of his developmental milestones.  He had an amazing memory. He had a large vocabulary. He loved ball drops, marble runs, rainbows, numbers, music, water and the phases of the moon. He had constant meltdowns, transition issues, sensory issues and was oblivious or overwhelmed by people. He did not play with other children and he used me as a buffer for almost every social experience.

I learned that there is more than one perspective. I chose to follow the perspective of autistic adults. They say “No about us, without us.”

Autism Awareness is a perspective aired by groups like Autism Speaks. These were the first voices I heard when I researched autism or sought services. They have a ton of information and material online, so this paper will focus on Autism Acceptance voices, wherein we have taken the most advice.

Autism Acceptance is the idea that Autism is a pervasive part of your person, it is the way you are wired. It can’t be turned off, medicated away and should not be regarded as an illness. You could say “different not less.”  Sometimes you might think “it is going away” or “s/he is growing out of it” this is not accurate. Autism is part of your identity.  Another word for this is Autism Positivity.

11 concepts Key Concepts for Parenting our child on the spectrum

Every child wants to feel Safe, Accepted and Competent. Bill Nason, Jennifer O’Toole of Asperkids and Mama Be Good are great blogs to help me keep that viewpoint at the forefront of my parenting.

  1. listening

 

2. Take advice from adults on the autism spectrum. Adults like Karla Fisher (Karla’s ASD page—invaluable, I follow her on Facebook), William Stillman (author of The Everything Asperger’s Book), John Elder Robison.

3. Read the  The Autism Discussion Page run by Bill Nason. He is compassionate and clear. I share his writing with my son’s teacher.

4. Learn the Token Management Theory. It is easier than it sounds. It does not require real tokens or charts. This helps us prevent meltdowns. This really should be number 1 as everything seemed to cascade from this.

from Karla's ASD page on Facebook...loads of great stuff in her albums. I save her images to my phone and Brady scrolls through them and reads her advice.

from Karla’s ASD page on Facebook…loads of great stuff in her albums. I save her images to my phone and Brady scrolls through them and reads her advice.

5. Introduce your child to Autistic Role Models. This was hard at first, we had to find people online or read children’s books. I told Brady he was autistic when he was 7 and in 2nd grade (this is when he asked about it). This is a good article about explaining autism to a child. “On Being a Hair Dryer Kid in a Toaster Brained World” by Mom Not Otherwise Specified.  We watched YouTube videos by Jacob Barnett (he’s a genius so we can’t totally relate but he’s charming and practices great self-acceptance, on autism he says “I just roll with it”)

6. We read stories about Joey Hudy and we practiced science experiments from Dr. Mad Science, a boy on the spectrum who loves science too. In 2nd Grade Brady led some science experiments in class acting like Dr. Brady and he decorated his bedroom to look like Jacob Barnett’s bedroom and wore a hoodie and a baseball cap backwards like Jacob for a while.

7. Remember that “All progress occurs through area of interest”. Brady had strong interests that I used to draw him out. This is also called “Affinity Theory” and Ron Suskind has an interesting book about how his son was able to make connection using his passion for Disney.

Life Animated by Ron Suskind

Life Animated by Ron Suskind

  1. Practice Bill Nason’s article “Stretching Comfort Zones” we have a long summer vacation on the East Coast staying at my mom’s house. I constantly challenge Brady’s comfort level. It helps that I’m a little disorganized and thus he’s never been able to count on me to be prompt and predictable the way he longs for me to be.  It also helps that Brady read the article and is on board with the plan. Now that he is older he reads things too.

rocks69980182_o9. Cognitive Therapy is recommended for kids on the spectrum. The kind we use is based on the work of Dr. Abraham A Low in his book, Mental Health Through Will Training.  These techniques are a foundation of our parenting both of our children. I added a list of “spots” to the end of this passage. You train yourself to recognize when you are losing your temper and practice a spot to get your temper under control. You can click on spots here too and cycle through them. Practicing self-leadership is our way of helping Brady become aware of his temper as a manageable symptom and his perspective as partial. This was key to helping him recognize the viewpoints of other people. Because Brady is skilled at practicing self-leadership he’s made great strides socially.

I will never forget the scary things people said to me about Aspergers when he was a toddler. The reality is much different. He's happy. He has friends. He loves school. Life is good. We worked hard to help him understand himself and others. I hope our journey helps you.

I will never forget the scary things people said to me about Aspergers when he was a toddler. The reality is much different. He’s happy. He has friends. He loves school. Life is good. We worked hard to help him understand himself and others. I hope our journey helps you.

10. Learn about how play develops; learn about instrument play v. relationship building play—I remember reading about his in a child development textbook. Learn about pragmatics and expressive language. If you understand the mechanics of play, social expression and these child development milestones that most kids acquire intuitively you will be able to articulate what you are trying to teach your child. If your child does not learn from watching other people (social blindness) then you have to find another way to make that connection. Brady had huge delays in these areas but I did not even know the words for it to understand why he could not do certain things. He had clear and beautiful speech, yet speech therapy is essential for him.

in the beginning, playdates were really hard, Impossible. So we just did other things. We spent lots of time at parks and museums. And you know, that was not a waste of time. It was just another way of hanging out with my little guys.

in the beginning, playdates were really hard, Impossible. So we just did other things. We spent lots of time at parks and museums. And you know, that was not a waste of time. It was just another way of hanging out with my little guys. Now we have lots of play dates, but it didn’t come easily until he was 7 or 8.

11. The idea of narrative psychology. Read: “This is Your Life And How We Tell it” We use this idea to build a positive story to help him grow confidence. This is not the same as a social story, it is a narrative. It helps me offset undermining remarks about autism. For example: ”Autistic Children don’t like PE.” No doubt this is true—but that attitude can turn the child off from activities altogether. An ongoing positive narrative within the home that supports the idea that he loves and excels at sports.  Sometimes I think of the famous Theodore Roosevelt quote about “the Man in the Arena” Autism has such a strong stigma about what you do/are/like/can be, that I need to fight that in the home. My son already is hampered by rigidity, anxiety, fear of novelty, transition and new people. Why add to it with dire predictions?

We played with lots of tracks, dominoes, ball drops and loved kinetic sculpture. He loved predictable, orderly toys and structured play. So that is where we started, with what he liked. And then we stretched and stretched. Now he likes so many things.

We played with lots of tracks, dominoes, ball drops. He loved kinetic sculpture. He loved predictable, orderly toys and structured play. So that is where we started, with what he liked. And then we stretched and stretched. Now he likes so many things.

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat. –Theodore Roosevelt (THE MAN IN THE ARENA Excerpt from the speech “Citizenship In A Republic” delivered at the Sorbonne, in Paris, France on 23 April, 1910download PDF of complete speech )

What it was like for my in kindergartenby Brady K. My son wrote this post  with help when he was in 2nd grade. He attends a charter school and is mainstreamed. Today he has many friends and loves school.

my Listmania list of my favorite Autism Books (fiction/nonfiction/YA and adult).

best friends

best friends

Cognitive Therapy: The following is a list of Cognitive Therapy Prompts we use to manage fear and anger in our house—these are excerpted from Mental Health Through Will Training. We say this stuff like a broken record in our house, because nervous and angry temper ebbs and flows with the day. I realize it is a long and cumbersome list, but it was incredibly useful for us. I include this because many people I know asked me to forward the list when they hear me talking/explaining temper to my children. In a moment when he has temper or is worked up, these are pithy statements that I can use to move us passed an intractable moment. With practice it comes to the tip of the tongue and helps control temper. The easiest book to try the method out can be downloaded on your kindle for .99.

 

  • “I cannot” means “I care not”.
  • All I know is that I don’t know.
  • Angry temper is temper turned outward toward another.
  • Anticipation of an event is usually worse than the realization of that event.
  • Approval of others is a want, not a need.
  • Avoid self-importance. Others don’t sit around and think about what I did or said.
  • Be group minded.
  • Be self-led, not symptom-led.
  • Calm begets calm, temper begets temper.
  • Change your thoughts and impulses and your feeling and sensations will follow suit.
  • Choose peace over power. Don’t go for the “symbolic victory”! (See, I told you so.)
  • Choose to hope rather than “gloom, doom and despair.”
  • Comfort is a want, not a need.
  • Comparison temper is a form of fear temper. (comparing yourself to others)
  • Decide, plan and act.
  • Discomfort can be patiently borne, bravely faced and humbly tolerated. (we use this one all the time, “tolerate the discomfort”, we never say “it’s ok” we say “bear it”)
  • Don’t blame, complain or explain.
  • Don’t give outer expression to my inner environment when temper is involved.
  • Don’t let the trivialities of everyday life work me up.
  • Don’t take your own dear selves too seriously.
  • Drop the danger, diagnosing and judgment.
  • Drop the excessive need to control outer environment. (Outer environment is outside of us, inner environment is our feelings)
  • Drop the judgment on others and myself.
  • Drop the need to be exceptional.
  • Drop the use of temperamental lingo. (this means working yourself up and saying things like, I’m going to die, or it was the worst thing, etc.)
  • Drop the vanity of always knowing better and best.
  • ENDORSE for the effort, not the outcome.
  • Endorse like an ever flowing river…
  • Every measure of self-control brings a measure of self-respect.
  • Every day is full of frustration and disappointment. That’s average.
  • Everyone is entitled to their initial flare, (reaction).
  • Excuse yourself and others, don’t accuse.
  • Failure to practice spotting is Sabotage and so is failure to practice muscle control.
  • Fear is a belief and beliefs can be changed.
  • Fearful temper is temper turned inward, toward ourselves: self-disgust, embarrassment…
  • Feelings are NOT facts.
  • Feelings call for expression, temper for suppression.
  • Feelings rise and feelings fall.
  • Feelings should be expressed and temper suppressed.
  • Focus on what you Can do, Do have and Do know, not the opposite.
  • Get out of duality. A firm decision will steady you.
  • Go about my mental health with a strong aim, not a lose wish.
  • Have I endorsed today?
  • Have the courage to be wrong in the trivialities of everyday life.
  • Have the courage to make a mistake.
  • Have the will to “humility”.
  • Helplessness is not hopelessness. There is no hopeless case.
  • Humor is our best friend, temper our worst enemy.
  • I can act my way into right thinking. (Action produces motivation.)
  • I can always share my feelings with an understanding party, without using “temperamental lingo”.
  • I can bear discomfort and do hard things.
  • I can command my muscles to move.
  • I can control my speech muscles.
  • I can do the things I fear and hate to do.
  • I can do things in part acts, (baby steps) and then endorse for each act.
  • I can feel guilty without being guilty.
  • I can move my muscles as needed. Then endorse.
  • I cannot control outer environment, only my inner environment.
  • I don’t need to be a saint, hero or angel.
  • I have choices. (agency)
  • If you can’t change an event, change your attitude towards it.
  • Interpret securely, don’t exaggerate insecurely.
  • It’s okay to be average.
  • Lower your expectations and your performance will rise.
  • Mistakes are a healthy and valuable part of life.
  • Most symptoms are NOT dangerous, only distressing.
  • Nervous people have a passion for self-distrust.
  • NEVER INDICT, ONLY ENDORSE!
  • Objectivity terminates panic.
  • Our feelings and thoughts can lie to us.
  • Our self-worth does not depend on our performance.
  • Outer environment can be rude, crude and indifferent.
  • Peace from outer environment is temporary and isn’t really peace.
  • People do things that annoy us, not to annoy us.
  • Refuse to sacrifice inner peace for trivialities.
  • Reject bad thoughts!
  • Remember, peace over power.
  • Remove the danger from a situation.
  • Replace an insecure thought with a secure thought.
  • Resist impulses that are not good for your mental health.
  • Secure your racing thoughts.
  • Some things happen by chance and not by choice.
  • Spot and see if your “imagination is on fire.”
  • Stop, Drop (the danger) and Spot
  • Take a “ho-hum” attitude toward a distressing task or symptoms.
  • Take the total view of a situation, not just the partial view.
  • Temper blocks logic.
  • Temper is a luxury I can’t afford.
  • Temper is the intellectual blindness to the other side of the story.
  • There is no right or wrong in trivial matters.
  • Thoughts produce symptoms & thoughts let them go.
  • To be simple is to be great.
  • Treat your mental health like a business, not a game.
  • Trust in your own validity.
  • Unrealistic expectations bring disappointment.
  • We feel better in proportion to the amount of discomfort we are willing to bear.
  • We want to be exceptional, but fear we aren’t even average.
  • Wear the mask. (behave in a socially agreeable way)
  • When we express ourselves in temper we end up with self-disgust.

If you like to read or follow blogs, this is a list of Autism Positivity blogs representing many different voices (click CTRL+Click to follow the link or move your mouse over the link to see the URL in a tooltip). I copied and pasted the blogroll from this page, Life his Way):

  1. An interview with Karla, Dr. Arnold and me
  2. Our “less is more” IEP story
  3. It’s Not Hate: on advocacy
  4. Thinking Person’s Guide to Autism
  5. ThAutcast
  6. An autistified habitat!
  7. A hair-dryer kid in a toaster-brained world
  8. Mama Be Good
  9. Autism and Empathy
  10. The Third Glance: A peek into my (Autistic) mind
  11. Just Stimming…
  12. Tiny Grace Notes (AKA Ask an Autistic)
  13. Emma’s Hope Book
  14. Autistic Hoya
  15. Why “autistic person” and not “person with autism”?
  16. Another post on person-first vs. disability-first
  17. Wrong Planet
  18. On writing about autism science
  19. New Leaves Clinic: neurodiversity support in Beaverton, OR