Swan Mothers

Discovering Ourselves through Parenting

Expanding Awareness (Thank you, autism)

autismpositivity2013button2The next stage of human evolution will be marked by awareness that we are all interdependent cells within the super-organism called humanity.
Bruce H. Lipton, Ph.D. and Steve Bhaerman in Spontaneous Evolution: Our Positive Future (And a Way to Get There from Here)

I find immeasurable value in Awareness, the state of being able to perceive, feel, and be conscious of people, ideas, and patternsSince I first heard the word autism (December 2000), my Awareness expanded exponentially. My worldview widened, and continues to grow. I evolved, and continue to evolve.

 Awareness is like the sun. When it shines on things, they are transformed.
Thich Nhat Hanh

Before autism (and my children) expanded my Awareness, I was very certain of what I should do, how people should act, and how the world should be. Because my children didn’t match my image of how children were supposed to be, because I loved them, and because I wanted to be the mother they needed, I softened. I realized the value of being like bamboo, flexible and bending with changing conditions. I recognized the importance of acknowledging when I was wrong. I learned to be different from the mother I’d been expecting to be. Without the gift of autism, I would be shallower, more narrow-minded, and more rigid.

The measure of intelligence is the ability to change.
Albert Einstein

The diversity that we observe in individuals today demonstrates that there is no one optimal way to be. We can expand our Awareness by interacting, working, and playing with one another. We can learn to communicate with words and beyond words, recognizing that the task learning to communicate across styles does not fall to any group, but is a task for all.

It is not survival of the fittest, but cooperation, interaction, and mutual dependence among life forms that allows for the global expression of life.
Lynn Margulis in Symbiosis in Cell Evolution

The spectrum of people on the planet today is an invitation to see the essence of one another. It is an invitation to look with new eyes and listen with new ears, and to perceive with our hearts or our senses. It is an invitation to expand our perceptions and evolve. It is an opportunity to embrace uniqueness and individuality while recognizing our oneness.

Autism rocked by world in the most amazing way possible. Read more in my post Work in Progress and in the book that tells my story, and those of other changed mothers, Swan Mothers: Discovering Our True Selves by Parenting Uniquely Magnificent Children.

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Beyond Labels: Lessons from Autism and Parenting

When I started blogging, I thought my topic would be autistic and neurodivergent children and their mothers.  The more I wrote, the more challenging it became to work the words autism and autistic into the text. Writing “autistic child” felt forced.  Why? I wondered.

I realized that I don’t relate to the term “autism mother” and everything I write applies to all of my children – not just to my autistic son. It is not because he is not special, but because they all are. We all are.

I could write about IEPs and the gluten free diet and innovative therapies for autistic children.  But there are already many blogs, newsletters, books and magazines on these topics.  They are being done well by other people.

I find myself sharing wisdom imbued in me by my children.  I write about what I’ve learned along the way that has made our lives healthier, easier and happier in the hope that you will benefit.

The word autism turned my world upside down and inside out.  I would not be who I am without it. I am also ready to move beyond the label. What do you think?  I’d really love to hear your thoughts on labels in the comment boxes below.

Beyond the Label:  Lessons from Autism

Only one of my children is diagnosable and sports a recognizable label:  autism. When I think about him, I do not think, “My autistic child.”  I think of him as Daniel. I think of my quirky daughter as Ellana and my intensely principled son as Jonathon. I see each as a uniquely magnificent individual.  All three are beyond labeling or categorizing.  There is no normal in my house.

What is normal?

Synonyms for normal include:

·         typical

·         average

·         unsurprising

·         ordinary

·         common

Would you like to eat a common chocolate, drink an unremarkable wine, drive an average car, or take an ordinary vacation? Might you prefer chocolate that is uncommonly delicious, a wine that is remarkably silky, a car that offers a surprisingly refined ride, and an extraordinary vacation?

Why then are typical, ordinary, normal children seen as ideal? We don’t hunger for mediocrity in other aspects of life, yet we yearn for uneventful meals, ordinary nights and unremarkable parent-teacher conferences.

We are burdened by the notion that children should be a certain way.  That life should be a certain way.

How They Should Be, How They Are

Most people, either consciously or unconsciously, expect their children will be like them.  Fathers place tiny, spongy footballs in the cribs of their infant sons in loving anticipation of lives of athletic stardom.  Mothers play classical music for babies and take toddlers to Kindermusik to develop well-rounded, cultured children.  Grandmothers study little faces to see who the which family members the babies look like.

All of this usually comes from a place of love for the child and delight at the prospect of another chance at life.
But then something happens.  The future athlete can’t learn to ride a bike or pay attention to directions.  He certainly can’t throw or catch the ball.  The upcoming Miss Charming throws spectacular tantrums and refuses to listen to music.
Teachers and doctors and specialists say its autism or some other dis-order and the parents’ world turns upside down.

What’s in a name?

. . . language is entirely symbolic.  Words aren’t real.  They’re simply scribbles, doodles and sounds to which we assign meanings stored in the brain as images, feelings, and sounds:  mental constructs only vaguely approximating the objects they represent.   We use words to manipulate the mental representations, rarely scrutinizing our constructs under the light of physical reality.

–From Mark Rostenko’s article The Unnamed in Obscurious Moo
At first, the label is a lifeline.  It explains why our children are the way they are.  The words give us something to research:  autism, PDD-NOS, ADHD, sensory integration disorder, reactive detachment disorder.  The words connect us to others like us and are a way to find information.

Eventually though, we realize that our child’s -ism or disorder is not exactly like that of other children.  His or her most triggering behaviors and traits AND most endearing ones are quite unique.

Some suggestions about his or her condition are right on.  Others don’t work at all.

None of us fits neatly into a box.
We are all alike.  We are also all different.

Play a Game

When looking at your child’s differences or noticing people who seem entirely unlike you, play a game.  Say,“Just like me, this person….”

Notice the ways we are all connected. Notice  the ways we are uniquely magnificent.

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Lazy Parenting: Doing Things for Our Children

Daniel was working on his homework on morning while I fried eggs for breakfast.  Not understanding a math problem, he became frustrated.  As he gritted his teeth and whined, I turned around and quickly solved the equation for him.  “There you go!” I said turning back to the stove.  Instead of politely thanking me, he cried,“No, no!  Don’t do it for me.  Teach me!”

Later that day, I saw this exchange on Facebook:

Talisman Camps and Programs When is it appropriate and helpful to be a “helicopter parent” for your special needs child? When does it become unhelpful?

Natalia When our children are in distress, it is time to step in and support them. We don’t need to facilitate every event and interaction because they are not doing it the way we think is best.

Talisman Camps and Programs Natalia, we like how you say “Support” but do not equate that with “do for”

Ouch!  There was my post from just a few days before along with a compliment on not “doing for” our children when that is exactly what I had done that very morning.

How humbling.

I completely and totally believe that, as parents, we should support and facilitate our children’s endeavors, be they social interactions or math problems.  Yet, in my haste, I had taken the lazy way out. I did the problem for him instead of making a suggestion that may have given him the information he needed to do the problem himself.

I could have facilitated a moment of learning and confidence.  Instead, my actions said, “You’re too slow.  Here.  I’ll do it for you.  You probably couldn’t do it anyway.”

Reading the Talisman posts that evening, I realized:

When I am lazy or hurried, I “do for” rather than support.

In general, I have no objection to laziness.  I am a big fan of down time, reading, lounging around, and just being.

In this situation though, my laziness and doing what was easiest in the moment, did not serve my child.  Ultimately, it will not serve me.

We want our children to slow down and pay attentionI am committing to slowing down and paying attention myself.  I will pay attention to my children and how I can best serve them.

When my children are struggling, I will take a deep breath and ask:  “How can I help?”  I will listen to what they say and provide the support they need.  Instead of parenting by reflex, I will pay attention to the habits that are driving my actions and change them when needed.

It is infinitely more important to me that my children become confident and self-sufficient – including asking for what they need – than that they get perfect grades on homework assignments or act “right” according to some unspoken rules.

Allowing Success, Building Confidence

When children do things on their own, they learn:

  • I can do hard things.

  • I’m good at figuring stuff out.

  • Mama trusts me.  She believes I can do it.

When parents constantly jump in and do things for them, they learn:

  • I can’t do anything right.

  • Mom and Dad do everything better for me.

  • Mom never let’s me do anything.  She must think I’m stupid.

What are you teaching your children?  Will you join me in slowing down and paying attention?

We can learn from what we say and write and think.  We have all the wisdom we need inside ourselves.

I will be taking my own advice.  When my children are deeply frustrated, I will support them.  I will encourage, give a hint, teach.  I will still do things for them of course.  It is one of the ways I show my love.  But when I do for them, it will be from a place of love – not because it is more convenient for me.

Next time they are tying their shoes or clearing the table too slowly, I will let them be. Except, when I slip and interfere and forget or neglect to be the mother I want to be. But I already wrote about that.

Getting to This Place

By gathering with other mothers and supporting them as they support us, we move along in our parenting journey.  Support groups for mothers starting soon.

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A Dark Side of Peer Pal Programs

My son’s school has a program called Peer Pals though which student volunteers work and play with classmates with special needs. Reading the permission slip I was required to sign indicating my consent for my autistic son to participate in Peer Pals, I felt uncomfortable. While I understood how such a program might benefit children, the idea of assigning my child a friend, or friends, felt wrong.

Daniel, then 12 and in sixth grade, was doing well in his first year of middle school. I know he worked longer to complete assignments and homework than his classmates. I know he didn’t understand much of what teachers said in class. I know he didn’t have friends who knocked on our door. At the same time, he was pleased that he had learned to operate his lockers and navigate the hallways within days. He persisted in doing his homework independently. He was happy.

During  fall conferences, his Resource Room teacher told me that there was a friendship developing between Daniel and Brian, a boy who sat at his table in English and Math. Mrs. S was teary describing how the boys talked and laughed together. Daniel told me that he sat with Brian at lunch. The relationship did not extend outside of school, but Daniel never expressed an interest in doing so, and I never suggested it.

To Peer or Not to Peer?

I discussed the the Peer Pals program with Mrs. S. She explained that his Peer Pals would share notes with Daniel if he missed a class, that he would have a Lunch Bunch so he wouldn’t “have to” sit alone in the cafeteria, and that the children would participate in fun activities to facilitate socialization. I decided to sign, but asked Mrs. S ensure that Brian did not become Daniel’s Peer Pal since their friendship was developing naturally.

A few weeks later, I discovered that Brian was Daniel’s assigned Peer Pal. Distraught, I called to ask how this had happened. Turns out the arrangement was a mistake. The social worker who runs the peer program, Mrs. K, had not communicated with Mrs. S prior to seeking peer mentors among the sixth graders.

They asked if I wanted Brian removed as Daniel’s Peer Pal, explaining, “Brian volunteered because he wanted to help Daniel.”

It was too late. I didn’t want Daniel to think Brian didn’t want him to be his pal. I didn’t want Brian to feel that his good deed had been rejected.

Daniel and Brian remained Peer Pals, assigned to each other. I was devastated, disappointed that I’d allowed a potential friendship to be marred.

Full Circle

When Daniel asked, “What’s a Peer Pal?” I explained that a pal is a friend, that Brian had volunteered to help him if he needs help in class because he’s his friend, because Brian wanted to be the one to help if Daniel needed help.

The school year passed. Daniel sat at Brian’s lunch table every day. There was an indoor (due to rain) picnic for the peers in the spring. There was a field trip for The Peers.

Then, in the last week of school, the yearbooks were distributed. Among student groups in the back pages was a group photo titled Peer to Peer Mentors. Daniel saw Brian in the picture and asked, “Why I not in this picture?” tapping on the page with his finger and looking with me with wide-open eyes. He was confused, and sad.

All of the “normal” kids were pictured. You know, the ones who volunteered. The ones who helped the less fortunate. The heroes. What does that make Daniel and the other autistic kids, the ones with Cerebral Palsy and Downs Syndrome, the “other” peer in Peer to Peer?

What Now?

A new school year has started. I expect that the same form will come home in Daniel’s folder, asking my consent for him to participate in the peer mentoring program.

  • If you’ve been in this type of group, please help me understand.
  • Was the group helpful to you?
  • How did you feel about it at the time and in retrospect?
  • Does experience in a facilitated setting translate to other situations?
  • How can parents tell if they are helping and supporting, or imposing their values and goals on their children?

Perspective and Experiences from Autistic Adult Bloggers

Sometimes What Looks Like Empathy, Isn’t

by Lynne Soraya

My new teacher was very extroverted and people-centric – traits that would seem ideal in a teacher. But we quickly came to clash. In her estimation, being alone and isolated were the worst possible outcomes for anyone. I was both.

Not that I wanted to be…but I was coming from a completely different perspective. For me, isolation was a far less painful place than the world in which I had spent the previous year – a world in which it was impossible to tell the cruel from the kind, and being around people meant living in constant fear, wondering where and when the next attack would come. And my teacher unknowingly made it worse – in an attempt to integrate me into the social sphere of the classroom, she “assigned” me a friend. read more

Out of the Goodness of Your Heart

by Judy Endow

I have nothing against the goodness in the hearts of other people. However, I would like to explain how it feels to be on the receiving end when I am befriended out of the goodness of your heart.

First of all this doesn’t a friendship make because authentic friendships are reciprocal. This means that giving and receiving go both ways. The benefits are mutual. When you befriend me out of the goodness of your heart – and then tell me so – I understand that you are assuming the role of a kind benevolent person while I am perceived as a less than person, assumed to not be able to have real friends so will be grateful to you for including me. – See more at: https://ollibean.com/2013/12/10/goodness-heart#sthash.0L1iIM0b.dpuf

 

 

 

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