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.

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

 

Connecting with a Magical Author through song

My students love Shel Silverstein–they love his poetry and his music.

I have 4 copies of The Giving Tree, and the groups of friends will check out all four books together and read them together.

thegivingtree

One of my students learned to read with The Giving Tree.

image-from-the-giving-tree-shel-silverstein

Some kids are Green Eggs and Ham Kids but she was a Shel Silverstein girl.

I like knowing that about someone.

Some kids found about about him through the Wimpy Kid books.

shel_wimpy kidig

My husband is from a Shel Silverstein loving family.

When we combined libraries, his books were college textbooks, sci-fi fantasy and autographed from family member Shel Silverstein.

we lost

This post is dedicated to Aunt Dianne, who we lost this year. She had great humor and loved children. 

I can’t dream up a better book to start a new library. Do you have a favorite Shel Silverstein memory?

 

Could you make new tunes or pictures to go with these poems? Try it and see!

shel-silverstein2

Steve Spangler Science: Static Flyer

My husband visits Brady’s classroom periodically to lead science projects.

Last week it was Electromagnetism.

hard to tell, but look above the balloon for the floating disc...that's the science!

hard to see in this light, but look above the balloon for the floating disc…that’s the science!

If you want to try what he did at home, or in a classroom, it worked for us!

electromagnet

The kids also built electromagnets as teams. He brought in four kits, one for each table.

This is the experiment he used. He spent evenings testing it beforehand and I recommend you do the same.

brady and a 55_o

The magnets were hot! be careful!

Super fun day!