My manifesto: Why I fight for children to play

I had children late in life (sort of) I was 35 when I had my first child and nearly 38 with my second. When I started working in a school I realized I was a generation older than many of the parents. Like most people, I parent based on how I was raised. I was raised in the 70’s. My parents worked. We had babysitters, community camps, we were latch key kids from time to time.

My mother lavished us with books.

My mother lavished us with books.

I had a paper route that I inherited from my big sister, so I started delivering papers and collecting money from strangers when I was 7, I was a very busy babysitter by the time I was 9 and stayed busy earning and spending my own money. We lived in the suburbs, across the street from a lower income apartment complex. I spent an enormous amount of time outside with gangs of kids or alone in creeks, dumpsters, alleys, graveyards other people’s backyards where I should not have been and storm culverts under city streets.  I was not athletic and did not have any sense, but my parents were busy, I had several sisters close to me in age and that was just how it was for us.

I know a little bit about not fitting in myself.

I know a little bit about not fitting in myself.

My house was full of books, I read whatever I wanted and sometimes was busted for reading things I shouldn’t (Flowers in the Attic) or never caught (Harold Robbins in 4th grade, oh my!!). I watched TV until my eyes popped out of my head with our babysitter Mrs. Murphy, who was a somewhat tragic figure that was very gentle and patient with us. I was terribly abusive to her, she smoked endlessly in our living room and watched all the game shows on channel 21 in the morning and then all the soaps on channel 21 in the afternoon. I watched Budd Dwyer kill himself on live TV when I was home on a snow day. I read and stared and inhaled smoke and watched soaps and played atari and rode my bike everywhere and fought with kids and collected coins and stray dogs and was a giant weirdo. It was the best childhood ever.

Fountains for wading

Fountains for wading

I learned so much. It made up for my Catholic grade school which was so dull I was ready to die. I was always reading a book under my desk and being told to stop, the only person that gave me free rein was the grumpy librarian Mrs. Schupp who was never grumpy with me and would let me have anything I wanted all the time. The two greatest weeks of my school career were 1.) when my appendix ruptured and I was in the hospital for a week and overheard a nurse say I COULD HAVE DIED (this thrilled me to no end and actually still thrills me now since I did not die, it was almost as good as witness to my own funeral a long time fantasy of mine that I loved in Tom Sawyer) and 2.) when TMI had a nuclear meltdown and we were evacuated to Allentown for a week to live in my aunt’s tiny townhouse and I played with her collection of Avon bottles and carousel horses and her awesome crocheted dolly toilet paper covers. Her house had all the good stuff that I longed for with my jealous covetous, too many sisters to compete with heart.

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I was never ever ever ever ever going to get married or have children. Never. I was going to be a queen and have all my stuff and a million books and a dog and a convertible and go live in a big city and fill my shopping cart with candy every time I went to the store. And that is exactly what I did until one day when I was 29 I met Mr. Dreamy and realized he was the one person I wanted to have in my life forever and wondered how could I make that happen because I was not an easy person to be around, I was very selfish and ridiculous and chaotic, but I was thin and pretty and smart and had money so that sort of masked what a nut I was..and we fell in love and got married and for the first time in my life I started to work hard to learn how to be good and kind so Mr. Dreamy would be happy living with me.

Both boys are overjoyed to reunite with their dad. We had been on the East Coast for two weeks before he joined us. This picture was taken at the airport.

Both boys are overjoyed to reunite with their dad. We had been on the East Coast for two weeks before he joined us. This picture was taken at the airport.

We were married very quickly in fact…just four months after our engagement. I didn’t want him to change his mind. I asked my bridesmaids to wear whatever they wanted as all eyes would be on me, I arranged for them to picket my wedding at the state capital, Bloggess has nothing on me with her dead animals. I had picketing bridesmaids…as a  middle child I wanted to see if people would really really really do anything I wanted on my wedding day. And they really really did, and I loved it. A very special day for me.

Haters only hate the people they can't have or the people they can't be

Haters only hate the people they can’t have or the people they can’t be

Now we lived in DC and worked and were spendy (me) and happy (us) and life went on until everyone started to die, my grandmother, my stepfather, my beloved dog. And I thought. Wow. The only thing that seems to matter is children, perhaps we should have children? And like all normal people with normal mindsets, I reached out to a girl I did not know in real life who I knew from an online community was was super nice and had baby twins and a lot going on and asked if I could bring her meals and help once a week for  a year. And she said yes, and I ended up babysitting on Wednesdays for a year and at the end of the year, I thought yes, I can do this, I can have a child.

At two months, smiling at his dad.

Brady at two months, smiling at his dad.

 

Mr. Dreamy said, we can have two. I said SURE, we can have 12!

My favorite was watching Max build. But that's just because I'm his mom. I love when this look comes out.

My favorite was watching Max build. But that’s just because I’m his mom. I love when this look comes out.

Then I actually had one child inside me growing and I changed my mind back to one, but he talked me into two and now we have our two little freckle faced cuties. And it was definitely the right idea if I had only one child I would still be pureeing his organic food and having two lowered the bar on perfection and now we all just hang out. And I’m permissive. And I value play because I know the only way I learned anything was when I was interested and busy. And school was not interesting or busy. And being told what to do and ask to not touch things or explore makes me cringe for my kids. I assumed that kids would all play the same, no matter what year they are born but sadly this is not the case and if you are middle class and you want your child to play in a world where kids all have homework and tests and tons of private lessons and camps, you have to fight for it, you have to find your tribe and you have to work very very hard to let your kids play. Because it seems so many things are trying to make them sit still and stare.

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This is why I fight for children to play, because it is wonderful and it is not as easy to find it as one would think. It is disappearing like our natural world and unless you look very hard, you will miss it. I don’t want people to get hurt but I don’t mind when people make mistakes or are embarrassed or wasteful if it makes a lightbulb come on. I’m still a work in progress myself and I might be wrong, I only have one go at it, but Mr. Dreamy is by my side and he mostly agrees with me so even if others in my life think I am a little over the top (and they are right) this is how I came to be how I am. I am a product of my time and circumstance. How did your childhood inform your parenting?

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k8librarian reboot

I waste time writing in my head when I could be writing here. I think I should have a coherent page that makes sense, neatly branded with a color palette and graphics. A good headshot.

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I think if I had those black glasses that everyone is wearing and good eyebrows I could hold my own online.

Today K8librarian relaunches as my personal page in this quiet way to the 11 people that read my page and hopefully the habit of tending this page will yield the other features I want. My husband and I both work from home in virtual offices and my boys go to a school I love. For the first time in 9 years, I won’t follow my boys around all day, Brady does not need me anymore, he can advocate for himself (hopefully!!). Max has a teacher that brings out his best, he has daily gym, he loves being a big kid, his school has a new building with a focus on sports.  He is in a good space, as long as he doesn’t turn around.

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Max was completely freaked out when he got his kindergarten class pictures and this was in his folder. I said, good thing you did not turn around. It scared his friends too. So satisfying.

I’m no longer a school librarian, so I can write openly here. My son Brady, is rocking it–closing gaps, hanging out, his expressive language, security and development is awesome. He’s fine, no more special needy than any other child with one area of challenge as he manages everything else on his own. He’s done his work and we have worked REALLY hard, all of us, to get him to learn the things from intention that he needed to learn. I can write bi-weekly about what I wake up each morning thinking about.

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inside, I will always be a librarian. Inside, there will always be something a little bit wrong with me.

I spend an enormous amount of time around topics like 21st century learning, our changing home, healthy eating (my downfall), raising the best kids I can the first time around, childish play, family travel, neurodiversity, reading, working from home, keeping up with tech, trusted voices, mental health, creativity and most especially change. I love change and I welcome the brave new world my children will work and live and love in. I’m concerned about their education, their health and their financial prospects with globalization. I’m going to use this space to write about those things, every day and see where the conversation takes me. In the end, all I know is that my brain is overflowing and sometimes I feel like I will go crazy if I don’t let some of these ideas out to get a perspective.

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I hope you enjoy visiting my page and participating in the conversation because I love a good exchange of ideas. Special thanks to my friend Denise for her graphic wizardry, who has always had something a little bit wrong with her and thus has stayed friends with me for many many years for no other reason than we relate to each other. Or else she just really really likes people named Kerry.

People make bad choices when they’re mad or scared or stressed…

that reminds me of an old farmer friend of mine in Illinois, who used to say he never could understand why the Lord put a curl in a pig’s tail; it did not seem to him to be useful or ornamental, but he guessed the Lord knew what he was doing when he put it there. ” –Abraham Lincoln, to a soldier at the Soldier’s Home, 1864


I called a good friend after I read on Facebook about troubles her daughter was having at school.

Her child was made to feel unwelcome in the school community because of her frequent meltdowns. The little girl is very bright, a lovely little person. She’s 8, which in my estimation puts her in the category of “still figuring things out.” It’s true that by now, she’s too old to scream and cry. Yet she still does it. So, I wonder why?

Her teacher’s comment “She melts down when she doesn’t have direction” is what made me pick up the phone.

Children’s behavior serves a purpose. It’s easy and natural to talk around it “She’s too old to cry like that.” or blame, “She’s spoiled” or reject “I don’t want her here, she’s disruptive.”

"I see no difference," replied Fern, still hanging on to the ax. "This is the most terrible case of injustice I ever heard of."

“I see no difference,” replied Fern, still hanging on to the ax. “This is the most terrible case of injustice I ever heard of.”

Or you could remember that you work in education and this is one of the large problems that come with working with kids. Sometimes you find childish behavior in children.

Bill Nason is one of my favorite writers on children’s behavior. His perspective is useful and dispassionate.  He doesn’t judge or talk about poorly parented children. He looks at the behavior. Why would someone scream and cry and meltdown? If you are a teacher, or work with kids, or have children with social delays or challenging behavior, or rigidity–Read Bill Nason. He’s enormously useful.

All behavior serves a function (purpose) for the person. Behavior occurs for a reason(s). It serves a function for the child.” –Bill Nason.

Somewhere along the way, school changed from a place where kids learned and grew up into a place that kids had to learn fast and by a certain time and if they didn’t, then it was a big problem.  If you didn’t have your reading sorted by 1st grade, it’s a problem.  If you have your reading sorted, but you don’t know how to get along with people, that’s a problem.

Kids don’t work like that. They grow at different speeds, making big leaps and then nothing for a while and then these marvelous competencies. Or baffling behaviors. Their brains are amazing, but children’t don’t learn when they are stressed or frightened or overwhelmed.

Don’t forget your child is a child. You can’t program them or dump information in neatly and have it come out. That’s an adult learner, someone who has their personal habits sorted, is done with the messy work of growing up and is there to discretely take the information and move through the curriculum.

I’m a school librarian, but I’m not there just to check out a book or clean the library. I am with them, it’s a privilege to be close to children and have them trust you.

Do you know what is great about kids? When they have a hurt, they do think a band aid fixes it. That’s cool. When do you lose that?

Lots of the time, when they were in the library, they did not find a book. But they always found someone that looked at them like they were a little person and wondered what they were thinking about it and doing and I engaged with them. I wanted to draw them out, see what they were about and then we went from there. The books would come, the books are a long game. Childhood and development is a long game. When a child reveals themselves to you, good or bad, that’s information for you. It’s nothing more than what they are ready to show you at this time.

In heaven’s economy nothing is wasted. That meltdown? That outburst? That’s information. It is not an indictment of you, it’s an invitation to learn about a unique person.

I was lucky that I was not as directed and managed the way classroom teachers are. I was not burdened by parent expectations, state charters. The school administration supported me in letting the kids play and wonder. I wish that modern education allowed for childish behaviors in the classroom and less of the directed learning and assessment. Children that don’t fit the group are made to move. They change schools, they get labels, they start to see themselves as bad or broken.  Autism affects 1-68 children now. Or does it really? Is it just a category that has lots of room for uniquely developing kids, a space that has funding and services for kids that need an extra accommodation or more attention?

I hope that my little friend finds adults that help her find her way instead of shaming her and pushing her out, because a real teacher is someone that works with the whole child and not just the easy parts. A real school is one that supports a teacher and gives her/him the freedom and resources to make those connections and build those supports into the classroom. Once the stress is removed, the child can learn again and move forward.

All behavior serves a purpose. Do you have a child in your class that is driving you and everyone else bananas? You can work the problem. You can turn it around. That child is doing you a favor by giving you a road map to how he/she perceives the world.  That outraged little being is someone that is still trying to grow up and do the hard thing of getting along in a group or managing something overwhelming and you are the perfect person to help them grow up better. You got this, the first step is to draw the child in and keep them close to your heart.

The good Lord knew what he was doing when he put the curl in the pigs tail and when he put childish behavior in children.

 

Sample Letter to Classroom Teacher

Brady starts 4th grade next year and is in a great place. Our school is moving to a new building and he will have many new faces in the classroom. I won’t work at the school next year, so he won’t have me in the building to advocate for him. This change comes at a good time, he does not need me to take this role anymore, he is self-aware and can practice advocating for himself.

Notes for 4th Grade

Brady started school at STLC when he was 4. He feels safe, accepted and competent. Brady loves school.

Brady was identified as having Aspergers by a developmental pediatrician when he was in 1st grade, via the recommendation of his teacher. In the spring of 2014, Brady was diagnosed as “autistic’ by a developmental pediatrician and has an IEP. The word “Aspergers” is not a valid diagnosis anymore.

As a student with Aspergers, Brady is raised with acceptance and support. He has self-knowledge of what Aspergers means for his learning style and viewpoint. I share my experiences as an adult on the Autism spectrum (undiagnosed) and that lets him know that he is just one of many. The reality that he is a normal person with a unique point of view is mentally healthy for him.

Brady is gregarious, cheerful, easy going and has many friends. Brady participates in activities and socializes with many people. I do not think he is socially delayed, he has caught up with his peers.

Brady has classroom and learning challenges from Aspergers that are ongoing and present strongly at the beginning of the school year when so many things are new and then in the spring he does much better as the work of processing the large pieces are out of the way.

His challenges are:

  • managing novelty
  • transitions
  • processing new information
  • keeping up with the group
  • comprehending open ended information
  • organization of self
  • expressive language

Brady likes to get away from the group and take breaks to process information—this might be a few times a day in the beginning of the school year or you might see more in the afternoon as his energy flags. This is essential for him, but it should be respectful of class goals as well and not a distraction or undermining your classroom. You can find that balance with him. Brady does not expect you to treat him as less capable, he will get to know you and as he understands you and the classroom and the goals, he will perform better. We say “Autism is a reason, not an excuse.

He  struggles with novelty–because he has to process everything individually and misses the big picture. As the relationship builds, he will understand you and be able to communicate. This is expected. He has felt this every year and he always gets his legs after a bit. In a predictable setting, his performance will be very good. When he has his processed the situation, he can use intelligence, good memory, deep focus and willingness. Once you get to know him you will see his wheels turning or mired as his tokens fall out and he flounders. It’s interesting.

He has an average (non autistic) tendency to talk to his friends or let his attention wander or not listen if he is excited. This is not autism, this is immaturity and it is average with respect to his peers. I’ve witnessed it at school and I’ve drawn a line between the disability (processing) and the immaturity. He tends to misbehave more if he does not have a boundary or a parameter.

Aspergers gives him many advantages. He loves rules, order, he likes to do the right thing. He is very logical. He has a sweet purity and a silly side. He does not have any obsessions or special interest, rather a deep pleasure in physical beauty, tender with animals, patterns, color, science and math.

The best way to motivate Brady is with logic and fairness. As an Aspie, he takes negativity or temper personally. He will match it with challenging behaviors that will be intense and pointless. Logic works better. We talk to him like he is an adult and use reason, not punishments to correct his behaviors. If you explain your motivations, he will come around. We expect him to live in this world and support his teacher in her leadership and communications. I try not to “give him a pass.” He’s been sent to the principal and written up. We don’t regard that as “negative.” We regard temper or cutting remarks or an impatient or angry face as negative (and human, we do it to him, it just does not work if you are trying to get him to change or cooperate).

We tell Brady he is average and ask him to be group minded and respectful of other people.  He is used to tolerating discomfort and knows that strong feelings come and go. We love him just the way he is and expect him to be a great member of your class community.

Asperger Learning disabilities:

Fine motor issues, poor handwriting – we ask that his writing be evenly sized and spaced and this paper be clean and not crumpled or scribbled on. His handwriting was poor and we hope for average. This was a major focus in 3rd grade and he made great strides.

Difficulty asking for help when he needs help – He has speech therapy for expressive language. What you will see: He might not understand an assignment or directions and might sit and do nothing. He might have frustration and challenging behavior when he is confused. What he is supposed to do is ask for help, or if he cannot get his words out, he is supposed to write a question mark next to the question he does not know how to approach. This was a major focus in 3rd grade and he made great strides.

Mono channel – People with Aspergers process things one at a time instead of taking in the big picture so if he is looking at the clock he will miss the critical thing.  This is not something I expect you to accommodate, only to have a compassionate perspective about, it is not just immaturity, it is a learning disability. However, the consequence is on him and we expect him to compensate for it. Learning from mistakes or missing out might be a good way for him to heighten awareness of this disability of his.

Open ended questions: Brady has a hard time writing essays or open ended multi sentence assignments or verbally answering open ended questions. In a crowded classroom it might be even harder for him to do. This is something we ask him to try his best on, stay “group minded”, keep his challenging behavior in check and make a plan to take it home, do his best, break it into parts, or create a plan. This is something he is still “poor” on and has made the slowest strides with, but onward and upward. If there is a writing project, than perhaps special ed can tackle this in a small group setting with more support.

Literal – he is literal.

Executive function – his procedural memory is stronger than his ability to organize himself so he needs strategies for organizing his tasks—he might draw a blank or become useless when he has a new task, unable to figure out an approach and will need support. This is something for the IEP or special ed perhaps? Not sure when it would come up in the classroom. This is average for his age, but a reality of Aspergers. This is something we work on at home all the time.

Does not pick up on social cues or learn from watching other people without conscious effort, so if everyone is lining up, he will not necessarily start lining up too. It is more likely he will line up because he was directly told, or it is the routine that was established by direct instruction. It is equally likely because of his immaturity that he will not comply, but then we revert to the challenging behavior sheet and hope for better. Not picking up on social cues sometimes triggers the challenging behaviors.

Spacing out and doing nothing in the afternoon. Not sure what to do about this, but recognize he does it. I’m not a fan of it, but at the same time I’m not sure if that is Aspergers (flagging energy, processing) or lazy habits. I think as an adult he will have more discretion over his schedule so try to just keep an eye on is he learning and meeting his bench marks and loosen expectations when his energy is flagging. I gave him intense criticism for this (logically) last year and saw some improvement but still not impressed overall. Best accommodation might be not expect great performance from open ended tasks in the afternoon or at least have a compassionate perspective that this is not his most productive time of day.

Successful teaching style:

  • Predictable day
  • Clear expectation of what comes next. He loves to have a pattern or order to his day
  • Give him time to process new information
  • Recognize that he is sometimes oblivious (mono channel) and take a compassionate perspective on that but apply logical consequence
  • Explicit expectation or direct instruction with no assumption that he will intuit your meaning from non verbal cues.
  • Break things down into steps or procedures for an open ended question/assignment or refer to special ed or homework, it is much harder for him to do some things in a group setting because there is too much going on and his processing is overwhelmed

Plan for Managing Challenging Behaviors:

  1. Stay group minded and respectful of the classroom goals
  2. When Brady has temper, make a hand signal and take a walk
  3. Retreat to a quiet place and do a quiet activity (read, Sudoku)

Brady’s challenging behaviors are short lived and intense. Brady does not hold grudges, is not particularly sensitive or anxious. His  social processing challenge is ongoing. If things happen too fast, unexpected deviation from schedule, loud noises or hunger/tired you will see it. This is an aspect of his Aspergers and it does not turn off or go away.  An easy way to think about his processing is to think about it like a blood sugar, and if it gets out of balance, he has a reaction.

Typical warning signs that Brady will manifest challenging behaviors:

  • Change in his tone of voice
  • Appearing tired
  • Growling, scowling
  • Shrugging shoulders up towards ears, making a face, panting and freeze posture
  • Manic energy
  • Crowding/invading space of others
  • Not responding to you when you ask him to stop, persisting in distracting behavior
  • Repetitive movements or actions

This is what we want him to do when he feels his “tokens falling out”

  • Asking for ‘down time’ –this is great if he asks
  • Wanting to engage in the special interest –this is likely reading a book or sudoko, helps him get it together
  • Transition from challenging activity, like writing to PE. He has a hard time writing but he likes PE so he will likely move on
  • Take a walk
  • Ask for help, use his words

Brady recognizes logically that he has challenging behaviors and that they are distracting and alienating to other people. However, at the time the challenging behavior manifests it is too late for him to do much except take a walk to get himself back into a sociable and “group minded” or non distracting frame of mind.

We call “challenging behaviors” evidence of “temper” and put the responsibility of Brady to manage his temper so that he is showing self-leadership, respect for himself and respect for others around him.

We ask his teachers and peers to take a compassionate viewpoint to his challenging behaviors and credit him for how far he has come.

Brady does not sulk or hold grudges. He is not very verbally expressive and when he has a challenging behavior or is tired, he cannot express himself. When he is very frustrated he will use his hands, or shout or slam things. These outbursts do not last long and the best thing to do is to encourage him to take a walk outside, offer a benign expression and then when he comes back endorse him for making an effort to manage his tokens and say “let’s start over again.” I don’t  usually ask what happened as it is easier to just move on.

He is concerned with social justice and if someone in class is experiencing shame or distress, Brady might have an outburst as well. He picks up on shame or cruelty and is bothered by it but not be able to tell you why. Sometimes when I see him looking angry and it does not compute for his day, when I look around I see someone nearby is hurting but he couldn’t tell me. We address that and offer comfort and then he recovers.

Challenging Behavior Triggers

  • Novelty
  • Deviation from schedule
  • Loud noise
  • Mint (smell)
  • Shame
  • Excitement
  • Hunger/tired

 

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.