Tag Archives: Christmas

The Gift of Emma

In the days leading up to Christmas, Ariane excitedly told me that Emma had written, “I want to write a story about Daddy.” Ariane said it was going to be my Christmas present. Obviously, I was incredibly excited as well. But on the following day Ariane came to me after her writing session with Emma and said:

“This story is going to make you cry.”

On Christmas morning, when I untied the bow around the paper Ariane had rolled up, I braced myself. The story was indeed sad, yet hopeful, wonderful and important, like all of Emma’s stories. It was also very private, and so, days later, I still hadn’t asked Emma if I could/should publish it. Ariane asked her today and Emma said she didn’t want the entire story published, but it was okay to post this section:

“One day there was a man and woman who fell in love.  They eventually had two children, one son and one daughter.  They were very happy.  The daughter was distinctly different, but meant well.  She did not understand many of the ways of her family.

“Her father told her that she was kind and smart.  She ran away because no one believed her to be clever, even though her parents did.  Her father wanted many to realize how smart she really was.  So he told others “do not treat my daughter like a baby.”  People did not listen.

“His daughter was sad, but her parents believed in her, and that mattered more.  She was the luckiest girl in the world.”

I’m so glad Emma feels this way. I wish she were even “luckier” and we had known all these things about her many years ago. I do truly believe that I am the luckiest dad in the world. Like Emma, I feel incredibly sad that I underestimated Emma for so long, that I was so utterly clueless to this entirely different aspect of her, that I could not see and appreciate. But I feel so blessed today to hear and see all these amazing parts of Emma I had never understood.

“Better late than never” is an apt phrase to convey both the joy and sorrow I feel, now that I’m aware of what is certainly only a small fraction of Emma’s talents, feelings, insights, intelligence and her poetic soul. It is also an apt phrase to convey the necessity of getting this message out to the world, something that Emma and Ariane, and so many other autistic people and their families and friends have been struggling so hard to do for so long, in the face of an Everest-sized mountain of misinformation from so-called “autism experts.” The most heinous sub(human) class of these is the “debunking” posse, who seem to spend every waking moment of their lives trying to discredit any assisted communication methods for autistic people. Yet no matter how hard they try, and they do try really hard–they will never succeed in keeping these blindingly brilliant autistic minds imprisoned by their willful and malicious ignorance.

The three best gifts I’ve ever been blessed with are my wife Ariane (who I met at a party on Christmas day 15 years ago!), and my wonderful children, Nicholas (age 13), and Emma (who turns 12 in January).

Emma is such a wonderful gift in so many ways. I could write another (even longer) post just listing all the amazing blessings she has brought to me and our family. But I’ll simply conclude by repeating one of the sections of her story that Emma agreed to publish, because it’s the kind of “better late than never” message so many more people need to hear:

“Her father wanted many to realize how smart she really was.  So he told others ‘do not treat my daughter like a baby.’  People did not listen.”

Maybe they are listening now, Emma. Maybe more and more people will hear your voice and the voices of your autistic brothers and sisters. Maybe all these people will someday be lucky enough to experience the gift of Emma.

Emma showing off her new red beret and her new art work (a collage of relatives).

Emma showing off her new red beret and her new art work (a collage of relatives).


Emma’s Gift to her Granma

I asked Emma what she wanted to give to her grandma for Christmas this year.  Emma wrote, “I will give to Granma a story about dogs who go to work instead of playing.”

Here is her story, reprinted here with both Emma’s and her granma’s permission.

A Folk Story For Granma ~ By Emma

“Once there were many dogs who went to work.  They worked part of the year in the fields, yet their masters wished they would work all the time.  So one day they organized a strike and their owners got very angry.  They told their owners they would not involve them in their decisions about how they spend their time.  Their owners said they had to work or they would not be fed.

“One day everyone went to work.  Sounds were too loud.  Every dog began to whimper.  The noise was so dreadful, the owners told their dogs to take the day off.  Noise is everyone’s enemy, but it is everyone’s  friend too.

“Today, dogs do not have to work in fields.  They are free to play.

“The End”

Emma chose this image to accompany her story.


Silence and the Words That Fill it

Emma has been writing stories to give as Christmas presents to a couple of special people in her life.  It is an exhausting process for her and one that takes a great deal of time.  As the person who is witnessing and encouraging her to keep going, it is always revelatory.  Her gift to me is her ongoing commitment to keep showing up for the hard work that is required of her to communicate in ways most people consider most important, with words.   However as I sit with her I am increasingly aware of how much, those of us who are talkers, often miss.   Because of my daughter, I have a heightened appreciation for the beauty of silence words seek to fill.

I cannot quote anything from the amazing stories Emma has written for family members, as they are gifts to be given tonight and tomorrow.  But I can quote this, which Em wrote in response to my question – “Tell me one thing about Christmas?”

Emma wrote, “Christmas means love and family.”  (This, from an eleven year old.)

There is nothing more to say.

Merry Christmas to those of you who celebrate and for everyone else, may you experience love and family, in whatever way those words may mean for you this holiday season.

Let Us All Be Safe

My favorite memories of Christmas are those spent at my grandmother’s house in Colorado when I was a little girl.   Every morning I would wake to see the snow covered mountains outside my bedroom window and snuggle deeper beneath the warmth and weight of the woolen blankets on my bed.  The smell of freshly baked orange buns and cinnamon rolls filled the air.  I grew up in Northern California not far from the Pacific ocean, so snow was a novelty and cause for great excitement.  The thrill of being in the mountains in Colorado during Christmas was something I anticipated with great excitement and impatience.   My grandmother always bought my sister and I a dirndl, the traditional German dress, to wear on Christmas eve, while my father, who was Swiss wore a pair of black leather lederhosen with white socks embroidered with green foliage, worn with black velvet slippers and a black or red cashmere turtleneck sweater.  Picture the Sound of Music with Christopher Plummer as my father and me as the youngest child, Gretyl and you get an image of how we looked on Christmas eve, though the similarities pretty much stop there.

When I had my two children I had an idea that I would dress them in lederhosen  and a dirndl, and over the Christmas holidays I would stay up late making yeast breads of various kinds and baking them early the next morning so that my children could have similar memories.  However this never came to be, though Em would probably love wearing a dirndl as she loves dressing up, just as I did when I was her age.   But as a parent I’ve learned that many of my memories do not need to be repeated, that my children will have their own memories and that they do not match mine is as it should be.  I have come to see that this is a good thing.   I had so many ideas about what it was going to be like to be a parent and almost all those ideas have proven wrong in the best possible way.  Letting go of my ideas about how anything should be has been a great gift, not just in parenting, but in life.  I did not come to this easily or without a fight.  And I still forget this truth often.

But I am grateful when I remember.   There is so much I cannot control.  In fact the only thing I have within my control is my own behavior.  I keep coming back to that over and over again.  I cannot control other people’s memories or behavior or prejudices or actions.  The only person I have any control over is me.  For today, let me behave well.  Let me be kind, loving and generous.  Let me give more than I take.  Let me help more than hinder.  Let me be the parent my children need and not the one I thought I should/would/was supposed to be.  And let us all be safe.

December 2009

xmas family-09

Related articles


Here’s the thing about Christmas with Emma – she has never shown any interest in it.  The whole Santa thing never held any appeal.  Fantasy is typically a difficult concept for autistic children to grasp.  Add to that her disinterest in most toys or anything which could be wrapped in paper with a bow and you have a huge part of what most children feel excitement for lost on Emma.  Since she loves to ski, we plan to spend tomorrow skiing with her.  We have a number of Christmas presents wrapped and under the tree, a Christmas stocking jammed with little gifts she may well reject or if she continues as she has in the past, will never even open.

Two Christmases ago we joked, after all her presents remained under the tree unwrapped, we would just save them and put them back under the tree the following year.  Our son, Nic, was justifiably horrified by both our jokes and the fact she couldn’t have cared less.

“Can I have them?” he asked.

“Nic, I guarantee you will not want the presents we’ve chosen for her,” we said.

“Well can I just open them at least,” Nic replied, unconvinced.

The following year we unpacked our suitcases and stored them in a little room upstairs where the children have stuffed animals and books.  There, in a pile, were Emma’s unopened gifts.  I felt sad, seeing them there, not because I want my children to be attached to things, but because it represents a lack of neuro-typical development.

Just as we always have a place setting at the dinner table for Emma, despite the fact she has not and will not, eat anything we prepare, unless it’s cupcakes or pudding for the past five years, we continue to have some presents for her under the tree every Christmas, just in case one day, one year, she decides it’s worth her time to see what’s under the wrapping paper.

Christmas is obviously representative of much more than giving and receiving gifts.  For Emma we must find other ways to express our love and appreciation, ways she can understand and recognize.   Perhaps the best way, is to do the things she loves with her – skiing, silly games, singing nonsense songs and just being with her.  Sometimes it takes a little girl with no interest in material possessions to remind us of what Christmas is really about.