Category Archives: mother/daughter

Dreams, Love, Loss and Gratitude

I had a dream last night that unsettled me.  I dreamt that I was standing with some other people and saw a woman with her young son.  He was small, maybe five years old at most.  I was fascinated because he was holding what looked to be a “string” like Emma has, but much smaller.  It was proportionately the same size as Em’s given how little he was.  I turned away because Em was saying something to me and when I turned back around the mother and her son had walked away.  On the ground was the little boy’s string.  So I picked it up and ran after them.  As I approached the mother I held out the tiny furl of string and said, “I think this is your son’s.  I wouldn’t want him to lose it.”  The mother stared at me and said, “What is that thing?”

I said, “Oh!  I think it’s maybe his string.  My daughter…”  but before I could finish she interrupted me and said, “That isn’t ours.  It’s garbage.”  I felt as though I had been punched in the stomach.  And then she turned away, carrying her son who gazed at me wordlessly over her shoulder.  I stood there watching them walk away from me and felt stunned and confused.  I wondered if maybe I’d somehow misunderstood and that perhaps it wasn’t important to her child.  And then I felt ashamed for having approached them and said anything.  Ashamed that I’d assumed it was important because my daughter’s string is so important to her.  Ashamed too, that what is considered beloved and of value to my daughter is seen as garbage by another.  I stood there feeling these things and then I turned to find my daughter was no where in sight.  I felt that horrible surge of panic and adrenaline as I began going through the various scenarios of where she could be or what might have happened to her.

When I woke up I wanted to cry I felt such unspeakable sadness.  All morning that dream stayed with me like a shadow.  All morning I have felt fragile and on edge.  And then I read my friend Gareeth’s latest blog post.  You can read it ‘here‘.  It is a daughter’s moving and powerful tribute to her mother.  I cried as I read because it is so beautifully written, but also because it is about profound loss as well as gratitude for what wasn’t lost.  Loss of time, loss of relationships, loss of missed opportunities…  and as I read I realized that dream was also about loss and judgement and denial and how we harm those we love.  And now as I sit here in my studio looking out at the bumper to bumper traffic on the 59th Street bridge, the rain pours down.  I can hear drops splattering the top of the air conditioner that juts out of one of my studio windows in irregular plops and pings.  Rain drops stream down the windows obscuring my view and I am surprised that I hear no angry honking given how treacherous the traffic is, just the occasional siren can be heard in the far distance.

I feel so grateful to all those people driving their cars who aren’t honking at each other.  I feel so grateful that though the traffic is at a crawl, people are being patient and it gives me hope.  Let me be patient today with every person I come into contact with.  Let me give myself the same respect and patience.  Let me be aware and kind and respectful to others today.  Let me feel gratitude for all that I have.  Let me feel my feelings and not behave as though my feelings are facts.  But most of all, let me know the difference.

Em’s string – February, 2013

Em's string

 

Emma Knows Best

This past Christmas I bought Em a snow fort.  Em loves bouncy castles and the snow fort looks a bit like a bouncy castle.  It seemed like an excellent idea at the time, except that it was missing a key component – it didn’t bounce.  It’s one of those gifts that looks good when you receive it, but once it’s been constructed it’s not so interesting.  Even I wondered, once we’d blown it up and put it out in the snow, now what?  What exactly does a kid do inside a snow fort?   Em was a trooper and sat inside it for a minute or two before extracting herself.

Em's Snow Fort

“No, it’s not a bouncy castle,” Emma said shaking her head as she wandered back into the house.

I stood there looking at it for a minute before following her.

“It doesn’t bounce,” I told Richard.

“Right.  It is without bounce,” Richard reiterated.

“And it’s not even a castle,” I added.

“It’s an inflated dome,” Richard said.

“It’s basically a piece of colored plastic,” I replied.

“What were you thinking?” Richard grinned at me.

I could interrupt this dialogue by going on at length about how Richard has the single best smile of any human being I’ve ever met, how when he grins these little dimples appear that take my breath away, how I can become so distracted I lose track of time, thought, words… I could do that, but I won’t.

Theatrical pause and winsome smile.  

Now where was I?  Oh yes, thinking… what was I thinking?  Well, the truth is I didn’t think it through.  I was thinking about her love of bouncy castles and how this looked sort of like one.  I remembered over the summer how we’d gone to our local YMCA to play on the bouncy castle they’d set up for a limited time and how the guy setting it up didn’t know how to operate it and finally Emma had to tell him.  At first he didn’t pay attention to her, probably assuming she didn’t know what she was talking about because of her non-fluency with language.

“What’s she trying to tell him?” another mom asked me as we watched from across the room.

“She’s telling him that he needs to tie the other end and that he has the air pump attached to the wrong tube, but he won’t listen to her,” I explained.

“Should we go over?” the mom asked.

“I already did.  I told him to listen to her, but he seems to believe he knows what he’s doing,” I said.  ”I’m betting on my daughter.  She is rarely wrong about things like this,” I added.

“I’m betting on your daughter too,” the other mom said.  The guy fumbled some more with the defeated looking, semi-inflated bouncy castle as Emma looked on with an exasperated expression.

Finally he did as Emma instructed with a little help from me and the other mother, and the bouncy castle was, well, bouncy as it was meant to be.  Emma was ecstatic and soon joined by a dozen other kids all screaming and bouncing together.

That’s what I was “thinking”.

Moral to the story ~ A brightly colored inflatable plastic dome is not the same as a brightly colored inflatable plastic bouncy castle.

Feel free to add your own wisdom to this story or add your own story…

The Magic of This Moment

Early this morning:

Nic: I’m late!  Gotta go Mom.

Me:  Okay,  babe.  Have a great day!

Nic:  I love you.

Me:  Love you!  Bye babe.

Emma:  Love you, Nicky..

Nic:  I love you Em.

Emma:  Bye bye

Just another typical conversation, right?

Um no.  No.  Not at all.  Nothing typical about it.  This.  This is why I don’t envy any other family, this is what I treasure about MY family.  This is exactly why, this conversation, this seemingly common, innocent, no-big-deal conversation…. yeah.  Because this conversation has never been uttered before until this morning.  And weirdly Nic and I were talking just five minutes before, while the three of us had breakfast about the importance and magic of being present.  We were discussing how this moment, right now, this second will never be repeated.  We may have moments like it, but this one?  Nope.  Never again.

And as we were talking about all of this, Nic interrupted me and we had the above conversation, the one I’ve just transcribed.  It may seem un-noteworthy to many of you, you may be thinking, so what?  Or who cares?  But to me, this conversation that other families have, perhaps on a daily basis and don’t think twice about, they are little nuggets of pure gold because these moments with my children are gifts, each one of them, pure gifts that I am so lucky to have.

In Buddhism there is emphasis on being present and practice and it isn’t easy.  It’s  a simple concept, but definitely not easy for most of us to actually do.  And yet, when I am able to really show up for this moment the joy is beyond description.

I will leave you with one more snippet.

Later this morning as Em and I walked toward her school, we stopped at a red light.  As we waited she linked her arm through mine.  Not a single word was exchanged.  We waited, a mother and daughter, side by side for the light to turn green and once it did we made our way to the entrance to her school.  As Emma entered the gymnasium where the children and teachers were waiting, one of Em’s classmates called out, “It’s Emma.  Yay!  It’s Emma.  LOOK!  Look!  It’s a cupcake, I love cupcakes!”

And Em looked back at me and grinned before running to greet her friend.

The Cupcake Hat

When the Words Don’t Match

The other night Em woke up at around 2:00AM crying.  She kept saying the same words over and over.  It was a kind of script, about an indoor playground that I used to take both children to when they were toddlers.  It is a playground that has been closed for more than six years.  ”Mommy has to look.  Daddy has to find new Sydney playground.  The tickets are broken.  Mommy has to fix it.  Oh.  You want to go to new Sydney playground!”

Do not try to translate this.  Lean into the emotion, what is she telling you?  Forget the actual words, the individual words are less important, it’s the emotion, it’s the intent… 

This is what I’ve been taught.  I’ve paraphrased the exact words my friend Ibby actually used, but it captures the general idea of what she has reminded me of more than once.  It’s an important concept and one that I didn’t readily understand at first.  In fact our initial conversation went something like this -

Ibby:  Do you speak another language?

Me:  What?  No.  I barely speak English.  Do I need to learn another language?  If you tell me I need to learn Russian to help me understand, I’m on it.

Ibby:  (I imagine Ibby took a deep, calming breath before continuing)  No.  You do not need to learn Russian.  But you need to feel the words instead of trying to do a word for word translation.

Me:  Feel the words?  Mind began to race, a panicky feeling overtook my body. I don’t know what that means!  What does that mean?

And so Ibby patiently tried to explain that by getting lost in the exact meaning of the words I was missing the emotions being expressed.

With this in mind, I went back to Emma’s bedroom with her.  Very distressed, she continued to repeat the script and then suddenly veered off to an unrelated, yet another, unattainable, desire.  ”I want to go to Martha’s Vineyard.  Not binyard, v, v, v, vineyard.  Mommy I want to go to Martha’s Vineyard.  No baby.  We can’t go to Martha’s Vineyard, it’s too cold.  I want to go to Martha’s Vineyard.”

As I sat with her listening, I tried to be present, neither lying to her nor adding to her anxiety, just being present and as I did this I felt a flood of recognition.  I realized I do a version of this too, only I call it “spiraling out”.  It happens at odd times, but being tired makes it harder to cope with.  When I think about how I spiral out an image of a pin ball machine comes to mind.  My thoughts are the little metal ball careening around hitting one side, ricocheting off the little bouncy things that make noise while the lights flicker, before shooting off in another direction.  Nothing anyone says helps me.  In fact, often well-intentioned people will make it much, much worse, because my mind is literally looking for things to think about that will create more anxiety.  The only thing that has ever helped me when I get this way is a calm, loving voice gently nudging me down a different path.  It has to be authentic and very, very loving and very, very calm or I become suspicious and even angry.  With this thought in mind I gently said to Em, “Is it okay if I tell you something?”  She nodded her head.

“I get upset too, Em.  Just like you are right now.  And when I do I have thoughts that I can’t stop going around around in my head.”

She sat up and looked directly into my eyes.  ”Sometimes when I feel stressed and tired I can’t make the thoughts go away.  Sometimes the same thoughts just keep repeating in my head and I can’t get rid of them.  Daddy calls it spiraling out.  But you know what?  It’s going to be okay.  I’m going to stay with you.  It’s going to be okay.  I promise.  Try to breathe.  Here breathe with me.”  We inhaled together and then exhaled.  ”Feel the cool air on your face and the warmth of the blanket on your body.”  I continued in this way, talking to her softly, trying to guide her, trying to make her aware of the present.  These are the things that help me when I’m agitated and feeling overwhelmed and eventually she rested her head on me, leaning her body into me as I spoke to her in a soft voice.

It was during those early morning hours with the two of us sitting together while everyone around us slept that I felt a surge of understanding.  When I get lost in the words that fill my head and when the words don’t match up with the emotions it feels confusing and I become perseverative and spiral out.  I see this now.  In the past I’ve called it anxiety.  I’ve said I’m overwhelmed and tired.  These are good words to describe what I’m feeling, but a more accurate explanation is that when I become fixated on specific thoughts, in my case they are often in the form of fears, I can become so lost in the specifics I lose sight of the emotions.  This has happened my whole life, only it took my daughter to get me to make the connection.  We are not so different, my daughter and I.

An image that calms me – The Manhattan Skyline taken while walking to my studio the other morning

Manhattan Skyline

Happy Birthday Dear Emma!

Happy Birthday Dear Emma!  

Eleven years ago you came into this world and graced us with your presence.  Eleven years ago you presented yourself to us and from that first moment that you drew breath you began to have an impact on all who met you.  You are an example of perfection, exactly as you are, without need of tweaking.  You are strong and wise and smart and intelligent and funny and talented and beautiful.  You are determined and a terrific negotiator.  You are fiercely independent and artistic and your mind, how you think, the way you perceive the world and those in it is a beautiful thing. You are patient and generous and kind.  You are loving and good.

You are perfect.

You are just at the beginning of your life, but already you have taught me more than I could ever teach you.  Eleven years ago I had no idea that because of your life, mine would change as dramatically as it has.  I could not know that because of you and who you are, my entire outlook on life, the world and it’s inhabitants would change so radically.  These are changes I welcome.  These are changes I am so very grateful for.  They are good changes, important changes.  You have forced me to see what I once could not.  You have shown me another way of living, a better way of being in this world.   You have opened my eyes to all that is possible, and it is beyond my wildest dreams.

You are perfect exactly as you are.

One day I hope you will be able to read this on your own.  But until that day arrives, I have one wish I would like to have granted on this day, your eleventh birthday and it is this –  flourish and do not ever, ever allow anyone to bring you down, make you feel badly or cause you to doubt yourself.  Spread your wings and fly dear Emma and I will be here to support you, to love you, to cheer you on and to remind you of your perfection.

You are beautiful Emma Rose.

You are perfect.

4:30PM January 17th, 2002 

sc000a1b04

January 17th,  2003

Birthday Girl-2003

Central Park – January 2004 

2004

January, 2005

2005

Jamuary 17, 2006

2006

January 17, 2007

2007

January, 2008

2008

January 2010

2010

January 2011

2011

January 2012

Birthday Girl-2012

 

 

Yes, These Are Things I Think About – What About You?

We, non-Autistics say all kinds of things without thinking.  We use a sort of socially accepted shorthand during a great many encounters.  It’s a way of being in the world that requires no thought, rote gestures and words that are mindless and often meaningless.  Expected utterances we don’t think about, we do and say them because we are taught to do otherwise is impolite.  Upon meeting someone we automatically put out our right hand in greeting.   We are taught to smile and ask, “How are you?”  The response is unimportant, after all we aren’t really asking the person we’ve only just met to seriously contemplate their mental state and then divulge this information to us, neither are we honestly curious except in specific instances when we know something about the person and have wanted to meet them.  But typically, “How are you?” is an opener.  It’s merely a polite question we’ve been taught to ask, showing the accepted degree of interest in the other person, even if we actually have none.

Someone I know sent me a wonderful piece she’d written about meeting her baby nephew for the first time and being expected to say immediately that she loved him and how disappointed her family member was when she couldn’t bring herself to say those words right away, even though she felt a number of things that we non-autistics would probably identify as feelings of “love”.  Reading her wonderful piece (click ‘here‘ to read it in its entirety) made me think about all those years when I would encourage Emma to say “I love you.”  I even said to her, on  a number of occasions, “I love you Emmy.”   To which she would reply, “So much.”  I then laughed and said, “No Em, you’re suppose to say, I love you, back.” And Em dutifully said, “You’re suppose to say I love you back.”  I don’t, for a second, doubt that Emma loves me.  I know she does.  I also know my desire to have her say so, is my wish and not a desire she puts much weight into.  For all I know Emma doesn’t say those words because she doesn’t  feel the need to, perhaps she doesn’t see the point in reminding me of this fact.  Perhaps, and this is the one I hope is most true, she doesn’t feel the need to utter those three words because she is secure in the knowledge of her love and assumes I am too.

Many of the “niceties” we non-autistics say are said with a degree of dishonesty because really, how “nice” is it to meet someone you may or may not ever see again, may or may not have anything in common with and do not have time to actually get to know?  And while we’re at it, let’s consider “how are you?”  How many people really care?  We are taught to respond with the equally (often) dishonest single word, “Fine” but how many of us really are “fine” when we’ve been asked how we are?  Seriously.  How many times have you been asked, “How are you?” and you either didn’t actually know, hadn’t had time to think about it or weren’t fine, but were instead feeling something else, yet replied with “fine” because it was simpler, easier, safer or because the conversation had already moved on, before you’d had the chance to give your more thoughtful reply?

So I’m curious – what if we didn’t ask or say things unless we were honestly interested and meant what we were saying as a way of communicating something new or that required discussion?  What would happen if, upon meeting someone we weren’t sure we really were pleased to meet, said nothing?  Would this be so bad?  What if, when asked “how are you?” we answered truthfully?  What if when we voiced our love for our children and they said nothing in return, we didn’t assume that meant anything other than our child did not find it necessary to state the obvious?

Em & Nic – Summer 2004

An Ode To My Daughter

Dearest One,

When you were first born I had an idea about you, it was an idea I have come back to, all these years later, it was an idea that was more right than wrong.  You were very much your own person right from that first moment you drew breath.  I remember marveling at your strength and independence.  I knew almost nothing about autism.  I hadn’t taken the idea of independence and remolded it as “autism” yet, only to rework that idea back to its original concept later.  I saw you and appreciated you for who I saw you to be.  Defiant, independent, strong, determined and silly.  Even as a baby you loved to laugh and appreciated silliness in all its various forms.  You loved playing peek-a-boo and being thrown in the air.  Those first eighteen months, before I knew words like “vestibular”, “proprioceptive”, “stimming”, “perseverative”, “echolalia” and all the other words that threatened to push you from center stage, making you less you and more an example of a diagnosis weighted with other’s learned opinions, I was in awe of you.

Words have power, but words can confuse, they blinded me for many years, I became caught up in what they meant or what others thought they meant and as a result was less able to appreciate you.  I used to wield those words as though they were weapons banishing what was, into something else, something undefinable, something “other”, something I wanted to find a way to control or remove.

As a baby before I knew those other words, you were in a state of either bliss or agitation.  I use to watch you with wonder and admiration.  You were distressed by the lights and the air seemed to hurt you, as though it scraped against your skin.  You liked being swaddled tightly in one of the soft baby blankets I had bought for your arrival.  You slept almost constantly those first two weeks.  Then your deep slumber was interrupted by internal discomforts I could not guess or see.  You greeted these intrusions with indignation, howls of distress and I felt a helplessness I had not known could exist.  A helplessness borne from not knowing; watching, but not able to intervene, hearing, but unable to understand.  I tried to comfort you, but my understanding of what comfort meant was not the same as yours and so your teaching began.  You have been so very patient with me, dearest one.  You have never given up on me.

You have painstakingly tried to communicate in a language that does not come naturally to you.  You have met me more than half way.  You have tried over and over to help me understand and you’ve never stopped.  It has taken me a long time to learn some very basic things about you, things you’ve been telling me ever since you were born, but that I couldn’t understand.  Things I still forget, but  I’m getting better at listening to you and understanding that words are not the only way a human being communicates.  I am getting better at hearing you.  I have learned to listen to your behavior as though it were a conversation, because it is how you reach out, it is the way you connect.  I am learning to lean into you, to not try to do a word-for-word interpretation of your verbal utterances, but to try to feel the meaning of what you are doing or saying.

You are Autistic.  Do not let other’s interpretation of that word define you, rather help others understand that you define it.  Make your mark in this world by continuing to believe in yourself.  Continue to stand up for yourself.  Advocate. Let your voice be heard.  ”Actions speak louder than words,” people say, but they don’t seem to apply that to you and others who cannot and do not rely solely on language.  Those people need to be taught, because actions DO speak louder than words if we can learn to listen to them.

You, my beautiful daughter, are kind and good and honest and talented and funny and caring and sensitive and yes, Autistic.  Be proud of your neurology, but do not allow others to limit you because of it.  Do not allow someone’s idea of what that means to encroach on who you are or how you perceive yourself.  You are Autistic and you are my daughter.  It could be argued that both come with a great deal of baggage, but both also come with many wonders and advantages.  Concentrate on the positives, lean into them, and make your way.  Reach out to me, grab my hand, together we are stronger than we are alone.

I am so proud of you.

Richard, Em & Me – 2010

 

GO VOTE!

*A version of the following was sent to me a few weeks ago.  This is about women fighting for the right to vote, but it could be the battle engaged by any group in the minority, including those who are Autistic fighting for the right to have a say in the policies that ultimately harm or help them.  It is the same story, told over and over again.  This post was inspired by Lydia Brown’s recent post, Protesting Autism Speaks on her blog Autistic Hoya where she recounts the response she received as she and others offered ASAN (Autistic Self Advocacy Network) flyers to Autism Speaks supporters and asked, “Would you like to hear from Autistic people?” only to be told “No” over and over again.

Less than 100 years ago women did not have the right to vote.

The 19th Amendment, ratified August 18, 1920, granted women the right to vote. Prior to that women marched and picketed as a way to bring attention to their cause.  These tactics succeeded in raising awareness, but were often met with massive resistance and brutality.

On November 15, 1917, known as the “Night of Terror” when the prison warden at the Occoquan Workhouse in Virginia ordered his guards to teach a lesson to the suffragists imprisoned there because they picketed the White House for the right to vote.


By the end of the night, many were barely alive. Forty prison guards wielding clubs and with their warden’s blessing went on a rampage against the 33 women convicted of “obstructing sidewalk traffic”.
One of those women was Lucy Burns. They beat her, chained her hands to the cell bars above her head and left her hanging all night.
Dora Lewis

They threw Dora Lewis into a dark cell, smashed her head against an iron bed, knocking her out. Her cellmate, Alice Cosu, thinking Lewis dead, suffered a heart attack. Additional affidavits describe the guards grabbing, dragging, beating, choking and kicking the women.

Alice Paul

Alice Paul began a hunger strike so they tied her to a chair, forced a tube down her throat and poured liquid into her until she threw up. She was tortured for weeks until word was smuggled out to the press.

Edith Ainge

Voting is our right. It isn’t always convenient, we have to take off early from work, find childcare to watch our kids, stand in long lines, but it is our right. A right our grandmothers and great grandmothers did not have.  It’s easy to take for granted that which we have grown up believing is a given.  But it wasn’t always our right, and while it is doubtful it could ever be taken away, there are many in this world who still do not have that right even today.

Helena Hill Weed – Serving a 3-day sentence for carrying a banner saying, “Governments derive their just powers from the consent of the governed.”

Lest we forget, rights we think are a given, can be taken away.

Go out and vote!

When Confronted With Parenting Questions, What Do You Do?

Someone asked me recently a question about teaching personal hygiene to their nonverbal child.  This was a question about shaving, in this case legs, but it could have been about underarms and certainly could apply to young men’s facial hair as well.  It got me thinking about  how I doubt my gut instincts or at least question them or perhaps even ignore them when it comes to my Autistic daughter and why that is.  This post is not well thought out, I’m just going to say that right from the beginning.  I’m mulling this over and would love other’s feedback.  Think of this post as a doodle pad and feel free to add your own doodles.

I’ve noticed that when confronted with a question about how to move forward with either of my children I use a couple of different methods to figure out what to do.  First I speak with Richard, then in Nic’s case, I’ll speak with him and ask a lot of questions, then I usually will speak with Richard again, sometimes he will have gone to Nic and the two of them will have talked about whatever it is too.  We will then discuss, often getting sidetracked with our own histories, there will be lots of comparing notes and then if both of us are still unsure as to how best to proceed we will ask friends, look for literature on the subject, go to the internet, seek professional help, call my mother.   (This last is said in jest, sort of, except that sometimes it’s been true.)  The point is there are a number of steps we typically take and so far this approach has worked out pretty well.

But what about when your kid’s language is limited or nonexistent, what then?  This is where the part of my brain that is firmly rooted in neurotypical thinking gets into a rut, like a record that keeps skipping until you pick the needle up and physically place it elsewhere.  I want to change my thinking when it comes to parenting my daughter.  I don’t like that I don’t automatically go to her and try to find other ways to communicate with her.  I want to make a concerted effort to do things differently, because here’s the thing, Emma has shown me countless times that she can and does have an opinion on any number of topics.  I may not have the kind of conversation I can expect to have with my son, it may take more planning, it may not be as “easy” but it is possible.  I have to train myself.   I have to teach myself and here’s the big revelation – often it takes me a while to learn, but I can and DO learn if I’m patient with myself and give myself the time and encouragement I need.

A couple of months ago I asked Ib (totally and unabashedly giving her new blog, Tiny Grace Notes AKA Ask An Autistic,  a plug here because it’s a much-needed and awesome resource, she’s brilliant and I love her, I love you too, Richard, but in a more, you know, marriage-y kind of way :D ) anyway, I wanted Ib’s help in trying to interpret some of Em’s scripts.  Ib and I brainstormed, but what became clear was that I was looking for a key to unlock her language as I understood it and what Ib kept (patiently) trying to explain to me was that I would never be able to achieve a word for word translation.  At one point Ib said, “Do  you speak another language?”  And I said, “No.  I barely speak English, but if you think learning Russian will help me, I’ll learn it.”  Ib (I imagined her taking a long, deep, breath) said, and I’m paraphrasing now, No you don’t need to learn Russian, but you need to try to feel what the emotion is in what she’s saying.

At the time, I was completely freaked out, couldn’t understand what she was talking about, but then after a few more conversations, and thankfully Ib didn’t give up on me, I began to understand, I think, what she meant.  My literal mind wants a word for word translation, but that doesn’t work.  So I’m learning to train myself to ‘hear’ her words differently, which brings me back to the first paragraph regarding questions about parenting and teaching and puberty and everything else.  I admit, I’m fumbling my way along here.  I don’t have any concrete answers, but I do know that listening is a huge piece in all these questions.  Listening to my children, listening to their sensory needs, but also listening to my own instincts.

Questions about puberty, hygiene, shaving and other such matters, I will continue to seek advice, particularly from my Autistic friends, while also taking into account my specific child first and foremost.  If it’s a question that is ‘optional’ such as leg shaving, how does my child feel, is it important to them, do they care, are they interested?  On issues like teeth brushing, where negligence will result in cavities and larger problems, I don’t think twice.  I started teaching both my children how to floss and brush their teeth when they were toddlers.  Both kids need to be reminded, but I don’t grapple with whether I’m doing the right thing, I know I am, I know how important it is.  But some of this other stuff, I begin to second guess myself.

Em and I have a routine at night.  When it’s bedtime she’ll say to me, “Mommy come.”  So I will go into her room with her where she lies down and then pats the bed so that I will lie down next to her.  In the past she’s said, “Mommy read story.”  And I have.  But for the last few weeks she hasn’t said that, but instead has talked.  At first it sounded like scripting, but when I listened to her I realized she was talking about people and school, the bus, sleepovers, listing people she misses or things she wants to do, just the way my son used to do when he still wanted me to lie next to him at night.  So I started asking her, “Hey Em, would you like me to read to you or do you want to talk first?”  Every single night Emma responds, “Talk first, then read.”

And honestly.  How awesome and amazing is that?

“Talk first, then read.”

Em, Nic and Friend

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