Swan Mothers

Discovering Ourselves through Parenting

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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scorch the earth #lovenotfear

Gorgeous poem on loving our children exactly as they are.

love explosions

scorch the earth
This post was written as a contribution to the “ Love not Fear Flashblog ” presented by Boycott Autism Speaks .

You are my child.  You are the child that I have.  And the very child that I wanted.

Your Autistic body is exquisite.
May it always respond to you.  To your will alone.
You owe your gaze to no one.
May you rest it only on that which offers you contentment.
Your flapping hands express your joy.
May they laugh at those that seek to make them table ready.

Your Autistic spirit is on fire.
May it burn bright in sight of those who would extinguish it.
You owe compliance to no one.
May you incinerate the intentions of all those who would force it.
Your worthiness of humanity is infinite.
May it ignite the blazes of love and acceptance to which you are entitled.

Every part of you…

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Love, not fear: Expanding Awareness, Embracing Beauty

This headline appeared in my Facebook feed one day. Landon Bryce, an autistic adult, opened his post with these words: This does not mean that if you hate autism, you do not also love autistic people. But you hate part of them.

On my Blessed by (Autism) Uniquely Magnificent Children Facebook page, I asked parents to comment on the above statement. They replied:

I hate autism and how my son is disabled and with low intelligence. I love my son. (Jo)

I don’t like autism but I love my daughter for who she is. (Annette)

On the surface, it seems that it is possible to hate autism while loving autistic individuals. When we dig deeper, we begin to sense the truth of Landon’s assertion.

I Hate that You Hit Your Sister, But I Love that You’re Impulsive

If my child were not impulsive, she would control her urge to hit. If she did not hit, her gentle parents would not (ahem) lose control and scream as if possessedIf she could be a little more thoughtfulwe could have a more pleasant, more normal life. (Why yes, perceptive reader, impulsivity does reside in our house.)

Enter Wabi Sabi Love

Listening to a New Consciousness Review podcast with Arielle Ford, I heard about Wabi Sabi LoveArielle, self-described Fairy Godmother of Love, introduced the concept this way:

Wabi Sabi is an ancient Japanese aesthetic that honors all things, old, worn, weathered, imperfect, and impermanent.  So if you had a large vase with a crack in it, the Japanese would put it on a pedestal and shine a light on the crack.

Wikipedia says:

[Wabi-sabi] nurtures all that is authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect.[3]

700 years ago, understanding emptiness and imperfection was honored as tantamount to the first step to satori, or enlightenment. In today’s Japan, the meaning of wabi sabi is often condensed to ″wisdom in natural simplicity.″ In art books, it is typically defined as ″flawed beauty.″ [4]

Wabi Sabi for Everybody

Here’s the thing: 

We are all flawed, and we are all stunningly beautiful.  Everything is In Creation, a work in progress. All is perfect, even when it doesn’t seem that way.

Arielle encourages us to tell a new story about the characteristics or traits that we perceive as flaws. A non-implusive Ellana would mean no joyful, exuberant, and very loud outbursts of singing, no wild swinging, no boisterous play with her brothers. A non-impulsive Jonathon would mean no running leaps into my arms, no tumbling on the bed, no shooting sounds during play.

Non-impulsive, my children would be calmer and quieter, but they would not be themselves.  And I like them exactly the way they are.

For Valentine’s Day, Arielle Ford created the Wabi Sabi Amnesty Vow. Check it out and consider writing a Wabi Sabi promise to your children. Consider writing one for your partner. Or for yourself.

Here’s my adaptation of Arielle’s Amnesty Vow:

Love by Pastel Punk on Deviant Art

Dear (Child),

I love you. You have been bringing me joy from the moment you were born. I appreciate every day that we are together. Often, I’m not good at showing it.

As you know, (oh, how you know!), for the past (16) years I have been criticizing you for (being disorganized, loud, and unaware). I have recently learned about a concept called Wabi Sabi Love.  It’s all about learning to find beauty and perfection in people, situations, and things exactly the way they are.

I now make a  Wabi Sabi Vow to you. Starting now, I am telling a new story.  I will do my best to find the beauty and perfection in your unique way of being and doing things, especially those that have bothered me in the past.

Please forgive me for all of the times I yelled at and misunderstood you. Thank you for being you and for all that you do.

Love, Mama

P.S. I will need to practice this Wabi Sabi thing.  When I begin to slip up, I give you permission to put me back on track by saying “Where’s the Wabi Sabi Love?”

Adapted from Arielle Ford at www.wabisabilove.com

Written for 

flashblog-entry

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Valentine’s Day? Bah, Humbug!

It is February 13, and, yet again, I have not bought those silly, pre-printed Valentines. When my children were in elementary school, I did buy them. It was required.

I’d watch other children walk to school clutching red-heart-decorated shoe and boot boxes to collect the cards and treats. I  supervised reluctant card-signing. 

Phony Baloney

Saint Valentine’s Day is a holiday observed on February 14 honoring one or more early Christian martyrs (none of whom are known for love or romance). It was established by Pope Gelasius I in 496 AD, and was deleted from the General Roman Calendar in 1969 by Pope Paul VI.

The roots of St. Valentine’s Day may lie in the ancient Roman festival of Lupercalia, which was celebrated February 13 – 15. Priests of the festival whipped bystanders.  Being touched by the whip was supposed to increase fertility in women.

What exactly are we celebrating?

I understand that contemporary Valentine’s celebrations in school are not about Christian saints or Roman holidays.  I understand (sort-of) that they are supposed to be fun. But what are we teaching? How do children who are socially inept, bullied, or shy experience this holiday?

Same, Same!  Cards for Everybody!

Children are required to give a card to each child in their class, so that no one feels left out. But kids know who likes them and who doesn’t. They know whom they like. They know when they are giving cards because they have to, versus giving cards they want to.

Teaching children to be kind and considerate to all of their classmates is a valuable lesson.  Teaching them to treat everyone the same, is not.

All children do not all wish to be treated the same. When sad, one child might like a hug, another to talk it out, a third would prefer to be left alone. Some children show their excitement with high-fives and shouts, others flick their fingers or flap their hands.

And a Little Red Dye #40

Almost half of my children’s classrooms have been peanut free. One was latex free. Our homeschool group avoided eggs because one family had life-threatening allergies. But artificial colors and flavors have been allowed in all classrooms. (Except at the Waldorf school. But that’s a separate, otherwise awful story.)

The UK banned artificial food dyes in 2008 after a study suggested they are related to hyperactive behavior in children. The UK demands that manufacturers use natural colors and flavors and US companies use natural products in the UK — while continuing to use artificial dyes in the products sold in the US.  (Learn more from Deborah Merlin, author of Victory over ADHD.)

My daughter was severely affected by red food coloring as a child.  Now, she avoids fake-red foods saying, “It makes me crazy.”

Bah, Humbug!

hum·bug

[huhm-buhg] interjection, noun
1.  something intended to delude or deceive.
4.   something devoid of sense or meaning; nonsense
  • I wonder what would happen if, in lieu of pre-printed, generic cards, we asked each child to think of one thing they admire about each classmate.
  • I wonder if the children would be surprised to discover that there really is something good about every person in the room, even in those children they don’t like.
  • I wonder how it would feel to receive 20-some pieces of paper that showed us the wonderfulness our classmates found in us.

What would you have the schools do in place of the humbug that is Valentine’s Day?

Note: 

I am now homeschooling my only remaining elementary school-aged child and am thrilled to announce that I did not buy cards or candy for Valentine’s Day this year.

 

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My Kind of Presence

“Children need us to be present.” I’ve read it in a hundred books and articles. I’ve probably written it myself.

When my children urgently, intensely need me, I can be present. When they are hurt physically or emotionally, I am 100% there. When they hug me, I’m there. During choir concerts, band performances, and karate tests, I watch and feel my heart swell with joy.

But when it comes to helping with homework or playing a game, watching karate practice or swimming lessons, my attention wanes.  No matter how actively I try to give the activity my full attention, half of my brain disengages.

Noticing What Works for Me

When I am talking on the phone, I iron or fold laundry.  If I am listening to a lecture, I take notes or scribble something unrelated.  When I drive, I listen to books on tape. My best ideas often show up when I’m not thinking.

For a long time, I tried to make myself pay attention to just one thing: smell and taste the food when I’m eating; focus on clothing while I iron; listen when people talk.

I was certain that was the right way to do things.  Everyone said so.

But that kind of presence didn’t work for me.  I gobbled food to finish eating as quickly as possible.  I left baskets of clothes unfolded.  My attention wandered when people talked.

One day, I acknowledged what I had known for years: I listen better when I’m doing something else.

Allowing My Children to Determine What Works for Them

An  article in the Wall Street Journal by Amy Chua titled Why Chinese Mothers Are Superior stirred up an avalanche of responses.  The most egregious aspect of the article was that Chua’s daughters had to do what she demanded, when and how she required.

I do not believe in parenting by total non-interference.  Parents are parents because children need guidance. When parents teach and support in a gentle, loving manner, children may benefit from our accumulated wisdom.  We show them how to navigate life on Earth.

Children also benefit from figuring out how to do things their own way. We can help our children to notice things about themselves by telling them what we observe.

  • “I see that your eyes are starting to close.”
  • “Sometimes you get cranky when you’re hungry. Have you noticed any signs that you need to eat soon?”
  • “You seem so excited about drama!”
  • “Tying your shoes is frustrating. Would you like me to show you a different way to tie?”

Let’s encourage our children to discover what works for them.

Let them discover their own how. Allow them to trust their own experience and knowing.

We can learn from our children how to support them and how to honor our own needs.

Need helping shifting your ideas about how things should be?  Consider shifting your beliefs with Matrix Reimprinting.

Does your child do something his or her own way? Do you? Please share in the comments below.

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Work in Progress

Thirteen years ago, my mother-hero’s journey began. My almost-three-year old’s teacher stopped me at the door. “We’d like to have someone from special ed come in and observe Ellana. She’s not like the other children.” My heart raced. My world whirled. Hours passed and I began to assemble the teacher’s words into meaning. She thought something was wrong with Ellana. I wept. I raged. I decided that Mrs. Francis was wrong. I refused the call to adventure. I rejected the labels the teacher and observer wanted to associate with my beautiful, brilliant girl.

Twelve years ago, I acknowledged that my child was very different from the other preschoolers and accepted the challenge to be the kind of parent (I thought) she needed. I decided to overcome the autism spectrumy thing. I donned my battle gear. I read, researched, and planned. I drove my daughter to therapy appointments and sampled treatments and therapies of many flavors. I had a goal. I would help her to modulate odd behaviors and acclimate to the ordinary world. I would fix the glitches in her system. I would make my child normal.

Eleven years ago, when my second child was two, he was evaluated and given an autism diagnosis. While Ellana’s way of being defied labeling, Daniel had never spoken a word. He pressed the buttons on his toys repeatedly. He flicked his hands in front of his face. He was happy, affectionate, intelligent, and obviously autistic.

Nine years ago, my first grader was in her fifth school in five years, and we were asked to withdraw midyear.  I plunged into the abyss. Amidst deep, dark despair, I experienced moment of insight: I would teach my daughter at home.

After five years of homeschooling, after much yelling, crying, and foot stomping from mother and child, revelation dawned: I did not need to fix my daughter or her brothers. They were not, and never had been, broken. None of them resembled the children I had envisioned, but they were perfectly themselves, and I loved them, no changing required.

Four years ago, my three children went to school. For the first time in eleven years, I was home alone during the day, so I decided to write a book. I interviewed mothers of autistic children and wrote about the transformative power of our parenting journeys. I was healed and enlightened. I recognized my children’s inherent awesomeness. Life was easy and good. And we lived happily ever after.

~ The End ~

Cue the laugh track. While the above is an accurate, though drastically abbreviated, telling of my parenting experience (the whole is here), and though I did feel as if my mother-hero’s journey had come to a natural conclusion, I relaxed on my (virtual) lounge chair on the beach, margarita in hand, rather briefly. The end was not The End, but a curve in the spiral of life, circling into another loop of The Journey. I had arrived . . . somewhere, yet felt more unmoored than ever.

 

Mother,
      a small BIG word, 
       gave my life purpose and meaning.

It was I,
         who knew what my children required.
It was I,
         who fed and healed.
It was I,
         who soothed and strengthened.

I was
     needed,
     heeded,
     indispensable.

Until I was not,
             not needed to fix, for they were not broken,
             not heeded, for they invoked their own wisdom,
             not indispensable, for they were competent and complete.

Mother,
      a BIG small role,
      forged the woman I am today.

It is I,
       who practice non-interference.
It is I,
       who aim to advise less and listen more.
It is I,
       who teach and support.

I was
     heated,
      hammered,
        beaten into shape.

Until I became,
               cool and unrestricted, flowing like water,
               expansive and pliable, open to constant change,
               sovereign and free.

Thirteen years into the journey, I am trying to not try to figure out a new purpose for being, striving to adjust to the flow of life’s currents, and learning to thrive in this uncertain space. I do not remember what I know every day. I relearn lessons I previously mastered. I slip, stumble, and fall. I notice twists, hills, and valleys on own journey honor the journeys of those around me.

I know that in every moment, we are all flawed, and we are all stunningly beautiful. All is perfect, even when it does not seem that way. Everything is in creation. I am a work in progress.

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How can I follow my heart when all it wants to do is sleep?

This year, one of my (few!) intentions is to listen to my heart and to obey my inner wisdom.  I know, I know:  cliché, blasé. I’m doing it anyway. I’ve realized that all of “secret to happiness” books say the same thing because it really is that simple.

Yet only one month into the New Year, I’ve  encountered an obstacle.  My heart just wants to sleep. A lot.

I like to write at night and nap a bit during the day. Yesterday, I dropped into bed for my siesta late in the day and severely over-tired.  When I woke after an hour’s sleep, I did not want to get up.

I pulled the covers around me and asked myself, “What feels good right now?”  Yeah.  Ask a drowsy body that.  My body begged for 15 more minutes. I closed my eyes and drifted off to that lovely space between sleep and waking.  (I could stay there forever.)  When I woke for the second (or was it the third?  fourth?! time), through the fog and delight of that in-between place, I asked my heart again, “What feels good right now?” Again, I heard the yearning for continued sleep.  Then, through the haze, I perceived something else. A question:  “Which feels better? What do you want more? 30 minutes in la-la land or a strong healthy body?” (I had been so tired that I lay down before exercising.) “Which do you want more? 30 minutes of sleep — or to write a few more pages of the book?”

Ah!  The always-insightful heart-wisdom pulled me to half-awake.  It knew that even though I had to drag myself out of bed and even though I hated putting on my gym shoes, in a few months I would feel magnificent if I did this today — and tomorrow, and the day after.

When we ask our heart a question, listening intently will reveal the true response.

Sometimes, the first response comes from a place that is not our heart. My heart-wisdom does not have a whiny and pathetic voice.  It’s timbre is strong and, usually, gentle.

When I ask my heart a question and am not sure who or what responded, I ask:  “Who is speaking?”  Whether it is my ego or my heart, it must answer truthfully.

Listening to Heart-Wisdom in Parenting

All children, and particularly uniquely magnificent children, those who are autistic, ADHD, indigo or exceptionally challenging in some way, require a lot of real work from their parents.  We do the physical things:  prepare meals, launder clothing, read with them, drive them to lessons and appointments.  We are called upon to be patient and kind and loving — often when our children’s behavior does not automatically elicit gentle responses.  We do a hundred things every day to be the kind of parents we choose to be.

Each day, both in parenting and in self-care, we are presented with opportunities to live from our heart.  I often ask myself, “How can this be easy?” or “What feels good?” My first response is usually right on. However, sometimes what feels good in the moment – and usually only for that moment — would not make me feel good overall.

The energy release of slapping a defiant child might feel wonderful in the doing — particularly if you have been doing patient and loving for 30 minutes and the defiance shows no sign of yielding. But the second after the slap, the feeling of relief flips to shame and disappointment in self and to sadness for the child.  We wonder, “Why does it have to be so hard?”  (What happened to easy?)

Accessing Heart Wisdom

Here is a simple and effective way to calm yourself and access heart wisdom.

1.       Place your hand on your heart.

2.       Breathe into your heart for a count of six.

3.       Breathe out of your heart for a count of six.

4.       Continue until you feel centered and congruent with your heart.

If you are using this exercise for calming, stop here.  To access heart wisdom, continue.

5.       Ask your heart a question.  If you want to know something but aren’t sure how to phrase it, ask, “What do I need to know right now?”

6.       Listen.

Preventative Maintenance

Do the above exercise daily – or hourly – to keep yourself healthy mentally, emotionally and physically.

An Invitation

Won’t you join me in listening to your heart-wisdom?  A group of mothers and I gather by phone or Skype for a few weeks and learn to change ourselves.  Peace in our homes begins with us.

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