Category Archives: mother/daughter

Belly Go Bang-Bang

We are flying back to New York today.  Last night as I was packing Emma called out for me.  “Mommy!  Mommy!”  Em has only just begun to do this – call our name if she wants us or is wondering where we are.  It’s such a small thing, but every time she does it, my heart skips a beat.  I’ve even caught myself holding my breath, waiting to see if she’ll do it again.  It brings me such joy.  “Mommy!”  she called, then waited to hear my answer.  “Hey Em!  I’m downstairs!” I called to her.  “Mommy’s downstairs,” I could hear her saying as she came down to find me.  (Another interruption. I know, but I can’t help it.)  The fact that Emma came downstairs to find me is another thing that is fairly new.  I could hear her footsteps coming down the stairs.  “Have to go see Mommy nurse,” Emma said as she plopped into a chair near me.

“Oh no Em.  What’s wrong?”

“Belly go bang-bang,” Emma said, bending over and holding her stomach.  (This is what Em typically says when she’s about to throw up.)  “You cannot punch.  Have to go to the hospital.  Go see hospital nurse.”

I looked at her and went through the following thought process – Oh shit.  Could it be her appendix?  What side is she holding?  No, she’s holding the middle of her stomach, this can’t be her appendix, but what if it’s something serious?  An ulcer, a tumor?  Em doesn’t usually complain about aches and pains unless it’s serious.  I then calculated how long it would take to drive her to the hospital, how long we would have to wait, how long it would take to get an x-ray, and then see an actual doctor to tell us the results…  Finally having run through the entire scenario I decided I needed more information.  

“Em.  Where does it hurt exactly?”

She pointed to the middle of her stomach.  “Hurts here.  Emma’s sick.  Take temperature?”  I felt her forehead, which felt fine.  “I’m cold.  Emma has to stay home.” She wrapped her arms around herself and then said, “Emma can’t go to new school.”  She frowned and pouted, while nodding her head.  “I know, I know.  Emma’s sick.  Emma has to stay home with Mommy.”

“Oh Emmy.”  I reached my arms out to her.  She came over to me and rested her head on my shoulder.  “I know.  Emma doesn’t feel well,” she said.

Just as she said this Richard’s voice could be heard calling out, “Hey Em!  Want to go for a ride on the 4-Wheeler?”

Em jumped up from the chair and called back, “Yes!”  Then raced out the door and bounded up the stairs.

Anxiety.  Stress.  Fear.  And that’s just what I’m feeling…  For Em it’s got to be even more complicated.

Em on the 4-wheeler

Letters, Photos, Autism And Jerusalem

I have been meaning to quote from a letter I received last week from Peyton Goddard and another from her mother, Dianne Goddard.  Peyton and Dianne Goddard wrote a book, I am intelligent, which I posted a couple of weeks ago, since then I am honored to be in communication with both of them.  Click ‘here‘ to read that post again.  I asked them for permission to quote from their letters here.  They have agreed.

This is part of an email Peyton wrote me, responding to the post I wrote about her book and labels.

“Pleasured I am pointed to hearing your understanding that lasted, large, limiting, linear labels are hulking jungles greeted by limitations. Keeping one limited is to measure there wastes of their great gifts.  One’s tears taste lime. Understares, terror builds. One washes their tears by return try freed to their Creator, as rest there they hunger. Polling my limits I kettled boiling red, as heard I’m trapped. There I wasted my lived times in pity. Limiting labels murder poignancy of sweet journey. I watered my liking to keep open living by questing for others better lives poignantly sweetened by encouraging swiping labels away. Wastes caging pertinent persons must stop. A trepid heart needs verses assuring “I’m deared by this very looking world. I can be me. My heart need caw no longer.” There joy is heard. These awesome pertinent persons can be freed to limitless. It greeted I hurrah…”

And this is part of an email from Peyton’s mother, Dianne –  

I spent much of Peyton’s first twenty years deliberating and comparing the severity of differences in persons labeled with disabilities that I met or read about. In the early years, this private, internal discussion between me, myself and I, offered some relief to my worries over Peyton’s delays and differences, as her challenges did not seem insurmountable if I therapied her enough. And professionals agreed. In the days before Internet could bring me many children to compare her levels of functionings and measured progress to, I found I could usually comfort my fearful self with observations that the few children we met with disabilities seemed to have much greater challenges than hers. A case in point was (removed the name for privacy’s sake) who was several years younger than Peyton. When talkative W. was three and not walking, he was tested. Duchene’s muscular dystrophy was diagnosed.  Debilitating muscles until death in his early twenties was the best case scenario. Pity him I did. And compare I did. While Peyton would be continuing to improve, he would be suffering a slow and sure death.

Not so. Peyton lost functioning and filled with a suffocating sadness she could not begin to shake for well over a decade. Yet W. lived happy. At his celebration of life five years ago I reflected on my foolish attempts to comfort myself by comparing the severity of challenges, and how thankful I am for new understandings of acceptance and valuing Peyton for ALL she is. Above all, I am comforted knowing she can really feel my love finally.”

The Icare4Autism Conference begins tomorrow.  More on that later.  To end, a few more photographs from our adventures in Jerusalem.

The Dome of the Rock  

Fragment of an Ancient Column in the Courtyard of The Dome of the Rock

Old Tombs in Valley of Jehoshaphat

Outside Zion’s Gate in the Old City

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Parent and Child – Who Needs Who

Emma just left, bounding out the door with Joe to catch the bus that takes them  to her day camp.  “I love you Em!” I called to her retreating figure.  “Bye!” she said, not turning back to look at me.  And I stood there in the doorway watching the outer door close behind her.  The constriction in my throat, coupled with the desire to run after her, hold her tightly against me, instruct her to “wrap both arms around and squeeze,” is so strong I have to talk myself out of it.  You and Em are different in the way you express your love for each other.  There is no one way.  You know this.  Shut the door, come back inside.  It’s okay.  It’s going to be okay.  I do know this.  I know Emma loves me.  I know she will miss me.  I know she is sad and perhaps even anxious that we are leaving for seven days, the longest we have ever left her since she was born into this world.

Earlier Richard and I sat in her bedroom with her and bopped up and down to Michael Jackson’s Beat it and Billie Jean.   Emma shut her eyes as she bopped, with a broad smile on her face.  She reached over and placed one hand on my arm.  It was brief, a second or maybe two and then her hand was gone again. Five minutes before she had to go down to get her bus, she said, “Play duck, duck, goose!”  So we did.  Richard and Joe and I sitting on the floor cross-legged as Emma went around patting each of us on the head, “Raincoat, raincoat, raincoat, Umbrella!” she shouted and then raced around and around before tearing off, laughing into another part of the house, with Richard in hot pursuit.  “Okay Em.  The bus will be outside.  You have to go.  I’m going to miss you Em.”  I wrapped my arms around her as she tried to squirm  away.  The constriction in my throat tightened.  It’s okay.  It’s going to be okay.  I know.  I know.

And then she was gone.  Just like that.  Gone.  And I want to sob because it’s so hard to leave her, because I need her to know how hard it is to leave her.  I want her to know I will miss her.  I want her to understand that I am not leaving her.  I hope she knows this.  I try to tell myself that she does.

I’m five and my parents are taking a trip somewhere, I can no longer remember where.  They go once a year for a few weeks, somewhere exotic, Africa, Peru, Ireland, Japan, returning with small tokens of their travels, a kimono in white and blue cotton, a pair of gold and emerald earrings from Ireland, a hand embroidered blouse from Peru.  The gifts have strange smells of some other land, a place I do not recognize, a place I may never visit.  But those gifts are for when they return.  The anxiety I feel when they leave is indescribable.  We are left with Mrs.  Williams.  

Mrs. Williams smells like antiseptic soap and something else, I hope never to smell again.  It is a smell that makes me gag.  I hate Mrs. Williams.  She is cruel and angry.  I know she hates me.  I can sense it.  I try to steer clear of her.  I try to keep to myself.  But it is never completely possible and then the hand comes down, sure and strong, unerring in it’s aim.  My bottom burns, my head slams into the bed frame with the force of her blows.  I try not to cry.  I try to be strong.  I think of my parents, why did they leave me?  What did I do wrong?

But we are not leaving Emma with Mrs. Williams.  We are leaving Emma with Jackie, someone she loves and asks for and she will be going to camp for one last week with Joe before we return to pick her up and return to Colorado where Nic is staying with my mother.  Jackie has planned wonderful outings for the two of them and Joe will be checking in over the weekend to make sure they are fine.  I’ve left copies of our phone numbers, passport info, hotel info, travel itinerary and contact info laid out on the island in the kitchen.  I went over the next week with Emma again this morning.  As though by going over and over it my anxiety will lessen.  Em, looks away from where my finger points at the calendar.  She is looking for her bowl to fill with Cheerios.  “Uh-huh,” she says, reaching for the milk.

She’s yessing me, I think with relief.  I’ve gone over this so many times, she’s memorized it.  She looks at me for a second, it’s a fleeting glance, but she looks into my eyes as if to say, “Mom.  Seriously.  I got this.”

And she does.  I know she does.  It’s me who’s struggling.  It’s me who is grasping. It’s me who needs to be reassured.  It’s okay.  You’re going to be just fine without her.  It’s okay.

Emma demanding that Richard come closer so that she can…

spray him with water from the seal!

Richard and Em, both soaking wet walking home last night

Continuing The Conversation…

Be honest.

I’ve written about this before.  Writing, writing that really reaches out and pulls others in is about honesty.  Even if you write fiction, it’s still about honesty, the feelings portrayed, the dialogue;  it has to be honest for those of us reading or we can sense it.  We know something’s a little off.  Sometimes it’s hard to pin down, it doesn’t seem obvious right away, but I’ve found it’s because I don’t believe what I’m reading.  It’s not entirely honest.  I have had this experience with my writing.  I have written things and then wondered why it didn’t feel quite right and it’s because I either hadn’t dug deep enough or I wasn’t being honest, which in many ways is the same thing.  Self dishonesty is one of the most difficult things to spot.  I spent years and years in a place of deception, of hiding from myself, my feelings, my desires, my ambitions.  I shut down.  I hid and it caused great pain, not just to me, but to those who loved me.  It’s hard work to be honest.

A couple of days ago I wrote about labels and my struggle to understand how and why they do not apply to our Autistic children.  Why they cause damage, why they are destructive and not constructive.  As is often the case, I use this blog to figure things out.  I think of it as my sketch pad where I play with ideas and then either move on to the next sketch or work and refine.  The pieces I work on a bit more, I often submit to HuffPo, I think of it as filling in with color and others I keep working on with the hope of putting them into a book, a finished canvas (this last part is very hard for me, sketching is easy.)  But as I’ve also said, I’m a SLOW learner so sometimes ideas will fall easily onto the page, or in this case the screen, but not move beyond it.  And that’s where the work comes in.  Because ideas are great, but if I can’t take them to the next level they won’t go anywhere.  Some things seem to take me awhile to really get, to fully  incorporate in a way that they become less an idea and more a knowing.

So it was this morning as Em and I made her breakfast.  I was thinking about labels and why they matter or don’t matter and why they bother me and cause me to ruminate and at a certain point I tired of the ongoing controversy raging  in my head, so I forced myself to shift my thinking away and be present for my daughter.  I was able to and eventually off she went with Joe onto the camp bus and I turned to my email and there was Outrunning’s latest post.  Now for those of you unfamiliar with Outrunning The Storm, click on the name, I’ve provided the link.  Did you read it?  The post – How Do We Talk About This?  I’ll wait.

I’m waiting…

Okay.  So there it is.  For those of you who didn’t click on the link, skip to the next paragraph, but for those who did, and if you’re like me, you also clicked on the comments and saw the first three from Moms who got what Outrunning was saying, who’ve been on the receiving end of exactly what she’s referring to and get it.  They get it, or so it seemed to me when I read their comments.  And then there’s my comment.  Yeah.  Okay.  So I still have some work to do.  I’m pleased to say that I did go off after leaving my comment and sobbed.

I’ve been very weepy lately.  Partly I blame my husband’s absence, he and Nic remain in Colorado while Em and I are here in New York, so I’m a little off-balance.  There’s a lot going on this summer and at times it all feels overwhelming, in a good way, but never-the-less overwhelming.  But I think most of my emotional overload is due to the fact that Peyton and Dianne Goddard’s book – I am intelligent – has stayed with me, in addition I received an email from Emma (not my daughter, another Emma, who two years ago began to communicate through typing and has a blog) that both delighted me and filled me with emotion.  I asked her permission to quote her and she has given it, but I want to be sure I also respect her and so will quote just two sentences.

“me name is emma and i am like peyton.”

And this:

“i am pleased if our emails teach people how to measure words or personal stories in front of people they think cant communicate..

Emma”

Take a deep breath.  Okay.  Be honest.

I spent years doing this to my daughter, exactly what Emma is pleading that we not do.  It has only been within the last year that I have stopped doing this.  I have to make a concerted effort to refrain from the temptation.  So I read Emma’s words again.  I have memorized them.  “I am pleased if our emails teach people how to measure words or personal stories in front of people they think can’t communicate.”  Read that again.  There is no condemnation, no criticism, just a heartfelt request.

We are in this, all of us, together.  Your version may be different from mine, you may have children, you may not, you may have someone you love who is Autistic or you may not.  You may be Autistic, you may not.  But we are all, each one of us in this together.  There are Autistics calling out, trying to be heard, blogging, talking, communicating, asking for respect, asking for a chance to join the conversation.  There is no conversation if a whole group is silent.  Whatever group that may be.  We are ALL served by listening, by sharing our experiences, by trying to understand.  As human beings it is our obligation to be honest, to try to dig deeper, to listen.

Alone we can do so little, together we can do so much.”  Helen Keller

Richard, Me & Em – 2003

Nic and Emma – 2011

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Sometimes it Takes Someone Else to Believe

This past weekend Em and I went to stay with my friend Bobbie on Fire Island.  I wrote about all my worries and concerns at length in a post last week that I’ve linked Bobbie’s name to in the above sentence.  It was a really long list of What ifs.  I knew if things got to be too much, Em and I could always head back to the city by ferry and then train.  I had a plan B.  I was prepared.  Fourteen years living with Richard, the ultimate boy scout, seemed to finally have worn off on me.  I packed lightly.  I had my computer, my iPad, a book, Douglas Biklen’s Autism and the Myth of the Person Alone;  I printed out stacks of scientific papers by the neuroscientists, Kamila and Henry Markram as I will be interviewing them in Jerusalem in another ten days and because this is what constitutes “light” reading for me.  I brought a variety of highlighters and pens and pencils and my camera.

Emma insisted we bring ten of her books, which I tried really hard to talk her out of, but that she finally convinced me she couldn’t be without.  We had more books and technological devices with us than clothing.  Never mind, I thought to myself, it’s hot, we’ll be living in our bathing suits.  And then Bobbie was outside and we ran downstairs, piled into her car and headed off on our little adventure.   By the time we arrived in Fire Island it was afternoon.  There are no roads so all the homes come with bicycles.  You drag your things from the ferry in a little cart, which you then unload and leave the cart and bikes outside your house.  Inside children ranging in age from 4 to 14 raced around and adults ranging in age from their late 30’s to late 60’s chatted.  Emma was in her element.  She loves nothing more than a house bustling with people and lots of noise.

The ocean beckoned, but Emma caught sight of a swimming pool on someone’s deck, “Go swimming in the pool?” she asked pointing to the neighboring house.  I explained that this wouldn’t be possible, though I could tell Emma remained unconvinced and when Bobbie told us there was an Inn just a few houses away with a big swimming pool, it was decided.  Off we went with Bobbie’s daughter Mina, who is exactly the same age as Em.  We  jumped and splashed and played “chicken” where the girls sat on our shoulders while they tried to push each other off.  There was lots of laughter and squealing with excitement and delight and I had a moment when I realized I was laughing and Emma was laughing and Mina was laughing and Bobbie was laughing.  I stared up at the sky in that moment, atheist that I am, and said a silent thank you.  It was heartfelt and honest.  I was relieved.  So incredibly relieved.

Here I was with my daughter, visiting my closest girlfriend with her family and another family, whom I didn’t know, but who were wonderful and we were welcomed.   The children were kind and inclusive, no one looked at me or Emma in that odd way, as though they wanted to say something, but weren’t sure they should.  No one spoke about Emma to me in front of her as though she were deaf.  No one treated her as though she couldn’t understand.  Everyone, children and adults alike, were kind and when Emma insisted on playing her special version of Duck , Duck,  Goose for the 25th time everyone played and came up with inventive word groups and laughed and chased each other around and around.

Em carrying our left over Buffalo Chicken Wings home


  

“Sleep wake up, go swimming in the pool, go to the beach, say hi to Bobbie and Mina and Frankie and Molly and Luca, play.  Sleep wake up go swimming, play in the ocean, sleep wake up…” Emma said that first night as I snuggled next to her.

“Wait Em, we’re here two nights and then you have camp on Monday remember?”

Em nodded her head, but the following night she said the same thing.

On Sunday morning she said, “Stay on Fire Island with Bobbie?”

“No Em.  We have to go home this afternoon,” I told her.

“I want to stay with Bobbie?”  Emma said sadly.

“I know, Em, but Bobbie has to go back too.  We’ve had a great time.  But we have to go back to the city.”

Emma nodded her head and said, “That makes me sad.  Come back later?  Come back next week?”

“Maybe next year.”

Emma nodded.  “Okay.  Come back next year!”

I thought about how fearful I’d been, how I had carefully planned for problems that never transpired.  I felt such gratitude toward Bobbie for having believed this was a good idea and for urging me to go, for providing me and Emma with a safe place to test the waters.  It reminded me of something an elderly woman said to me when I was in my thirties and struggling – sometimes you have to let others believe in you, so you can learn to believe in yourself.

Em at dusk on the beach

Saturday night on the bogie board

Em, Me and Bobbie heading back to NYC on the ferry

Waging War – Not So Much

I think of myself as pretty determined.  Someone who doesn’t take “no” for an answer.  A person who doesn’t give up easily.  When Emma was diagnosed I thought of “autism” as something to battle, wage a war on.  I saw it as something we needed to get rid of, a detrimental condition, which needed to be excised.   Emma is not “high-functioning” and while there are many people who reject these delineations of high and low functioning in describing autism, I do not know many parents of children with autism who fall in the moderate to severe category who object.  A child who needs support with daily living skills, while also being non-verbal or almost non-verbal has a very different set of issues than a high-functioning child who is mainstreamed and will most likely need support in holding down a job.  Both will need support, but one will need a great deal more and may never have the opportunity to live independently.  There is a difference.

In the over seven years since I learned of autism and first heard the word applied to my daughter, I find I am slowly letting go of the desire to wage an all out war on Emma’s autism and have been coming around to a slightly different view.  A view I hope will prove to be more productive and less stressful, for all of us.  Allow me to state the obvious – Emma is a little girl, first and foremost.  She is funny, has a great sense of humor, loves music and dancing, loves to perform.  Emma feels tremendous anxiety when she doesn’t know how to do something or is asked a question she doesn’t have the words for or is unable to fully grasp the concept of.  She tries hard.  She makes Herculean attempts to do what is asked of her.  She has sensory issues, which I still do not fully know how to help her with.  She has internal issues I no longer expect anyone to be able to diagnose.  And she is my daughter.

A few years ago she went through a period when she raided my lingerie drawer on a regular basis.  Richard and I (and sometimes guests) would be sitting in the living room when all of a sudden Emma would burst forth, donning a bra and pair of my underwear, but otherwise naked.  The bra haphazardly flung around her shoulders, the cups puckered, the underwear sagged and falling off, she gripped a corner in one hand to ensure they didn’t completely abandon her.  The first time she did this, Richard began laughing, while our guest, I think it may have been an electrician who was fixing a blown lighting fixture stared in stunned silence from his perch on a ladder, while I  hustled her back into our bedroom, out of view.  The second time she appeared, wearing the same combination – never any of the more colorful and attractive lacy lingerie I happen to own, always the same set of sensible, no-nonsense skin-toned bra and underwear – I was able to laugh with Richard, before telling her to go put everything back.  Her raid-mommy’s-lingerie-drawer episodes were interspersed with raiding my shoes, thankfully never at the same time, it was one or the other, for which I am grateful.   Her favored pair of shoes was a pair of red suede pumps, which she would clomp around in.  During these forays into my things, Richard would say things like – “She’s mommy’s little girl!”  or “She’s such a girl!”

That I love her, goes without saying.  She is my daughter, Emma.  Who happens to have autism.  The autism piece is complicated, the beautiful little girl/daughter piece is not.  I used to view Emma’s autism as something separate from her.  I used to think of it as something, like a tumor that needed to be removed.  I am coming around to having a less draconian point of view.  I am beginning to have some acceptance around it.  I find myself thinking less about ridding her of it and more about helping her be all that she can be.  Waging war has been exhausting.  Maybe, in the end, it all comes down to nothing more than semantics, but I am tired of battling something that does not need to completely define my daughter.  I am lucky, Emma is verbal, Emma has shown that she can and will learn to read, write, communicate more appropriately, focus, and is able to understand abstract concepts such as time, names, part vs whole, same vs different, etc.  It just takes a great deal more practice and time.

For more on Emma’s journey through a childhood of autism, go to:   Emma’s Hope Book

Autism – Daughters (continued)

I so wanted a little girl, I so looked forward to having a little girl who would feel safe enough to confide in me, the way I have always felt able to confide in my own mother.  (I feel a great deal of gratitude for that.)  I know how fortunate I am to have an amazing mom.  I have conversations with friends who audibly groan when the subject of their own mothers come up.

“If it’s not one thing, it’s your mother,” is something I’ve heard on more than a few occasions, uttered by exasperated adult children.  The famously “bad mothers” occupy several shelves of literature, poetry, plays and movies.  We all know them by name and every few years a few more get tossed onto the pile.  Beyond enjoying the guilty deer-stuck-in-the-headlights-horror of those stories, I cannot relate to them, thankfully.

My mother taught me how to sew and macrame, (this was the 60’s & 70’s) embroider, quilt and knit.  She showed me how to bake bread, make baclava, beef wellington and a fifty layer Daubache Torte.  I think I can justifiably credit my mother for my love of design and current career.  She read stories to me at bedtime and sang songs.  I remember sitting on the vanity in her bathroom as she got dressed to go out to a party.  I thought she was the most beautiful woman I’d ever seen.  I watched her as her hair turned grey and her fingers became deformed by arthritis.  I spoke with her about the aches and pains that come with growing old.  I looked to her the way one consults a Michelin Guide in a foreign country, she has always shown me the way.

Perhaps it is the same for Emma, I cannot know.  I know she feels connected to me as I do her.  I know when she wants something and I can often understand what she’s trying to say, even when the words come out wrong.  Lately she has even run to me when she’s hurt, though more often than not, I will have to prompt her, much the way I still must remind her to – “wrap your arms around and squeeze” when she hugs.

“You have to go see the nurse!”  Emma will shout when she hurts herself.  Then she’ll hightail it into our bathroom where she knows we keep a large supply of bandaids.

“Hey, Em!  How about coming to see nurse mommy?” I’ll ask blocking her way.

“Ouch!  Emma has a boo-boo!”  Emma will tell me, wiping the tears from her eyes, but keeping her distance.  Unlike neuro-typical children who instinctively seek out the comfort of a parent when hurt, Emma will instead cry out for the school nurse or say nothing and just take care of things on her own.  Often this means returning with a half dozen bandaids applied to various parts of her body, making it difficult to know exactly which part was hurt.

I think the thing about all of this that’s perhaps most important, is, while I don’t have the relationship with Emma that I envisioned when I was pregnant with her, we do have a relationship.  It’s a different relationship than I have with my mother.  But it is a relationship and it continues to evolve.

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com