Category Archives: Parenting

Entries about what it means to be the parents of an autistic child.

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

Costumes, Halloween and Genetics

Posted on Facebook this morning…

Thankfully this “costume” would not interest either of my children, though Charlie Sheen does hold a certain appeal for my son, just not in the buff.  The costume(s) Emma picked out, ostensibly for Halloween, but will be worn, undoubtedly, on an almost daily basis for the next few years, are due to arrive any day now.  She chose a pink mermaid outfit, complete with magenta feather boa and yes, the tail is covered in sequins.  As a backup she opted for a “Renaissance Princess” costume with faux fur and a veil.  It’s all very King Arthur meets Lady Macbeth-ish.  She whipped right past the costumes for ghouls, ghosts, goblins, zombies and various farm animals.  She hovered over a “Rainbow Witch” costume, but ultimately passed it by, pointing instead to the hot pink butterfly, the “ice Princess” and a costume I couldn’t figure out what exactly it was supposed to be, but looked like a giant multi-colored lollipop with wings or maybe it was a G-rated version of Lady Gaga, it’s hard to say.  I’m grateful Madonna has yet to come onto Emma’s radar, though it could be argued Lady Gaga, one of Emma’s favorite singers, is not so different.  Both appear to favor the cones used as warnings on construction sites for breasts, still trying to work that one out…

Looking back to other generations, it does seem Emma’s love of costumes was shared by several of her ancestors.  Both my grandparents, her great grandparents held “costume” parties.  There are boxes filled with photographs of my grandparents, particularly my grandmother, wearing some pretty outlandish outfits.  My mother has two racks of “costumes” occupying a corner of her project room in her house.  I have in my possession a hilarious photo of my mother dressed as Tweety Bird, but haven’t asked her permission to post it or I would. Evidently a love of drama and dress up runs deep in my family, one might even say it’s genetic.

Emma doesn’t care about the candy, she has no interest in going up to people and saying “trick or treat”;  for Emma it’s all about the costume.  Unlike her brother who sees the costume as a necessary annoyance to getting sugary morsels, sort of like the jacket and tie required at certain restaurants.  I have to say, I’m with Emma on this one, other than an inexplicable craving for that truly dreadful candy corn, (what do they put in that stuff?)  the idea of wandering around strong arming people into giving me treats doesn’t hold much interest.  However it’s right up Nic’s alley.  Each Halloween we debate which weapon in his arsenal he will brandish.  Usually he chooses several and with the inevitable face paint he demands, resembles something out of a spread in National Geographic featuring child soldiers in some war-torn country.  (Yeah, I did just write that.  Moving right along)  Nic finds Emma’s lack of candy enthusiasm absolutely baffling.  And while Emma doesn’t voice her astonishment at her brother’s disinterest in all things costume, I have to wonder that she doesn’t think it… odd.

It began young…

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Parental Bullying and Autism

I have kept the specific blog, post and commenter who I refer to in this piece anonymous because my point is not about any particular person, but about a larger issue.  But first, a little background…   I was alerted to some negative comments left on a friend’s blog.  She had written a post about learning to accept her Autistic child.  It was a beautifully written, honest and loving post detailing what things had helped her find her way to acceptance and how that journey had changed her and her relationship to her child.  The path she describes was similar to my own, except mine took much longer and was more circuitous, but I could completely relate to her process.  It was my journey, only on speed.

I went to the blog to read the comments and read this:  “”You accepted autism, I fought it.”  I stopped breathing.  I felt as though someone had taken a 2 X 4 and rammed me in the solar plexus.  I became aware of the fluttering in my stomach with the simultaneous sensation of dizziness in my head, starting just behind my eyes and then a prickly feeling at the back of my skull.  I could feel my heart pounding.  I swallowed.  I read on.  The words are no longer important.  She  related how she had “recovered” her child as though it were scientific fact and then said that her thinking would one day be common knowledge and any other view would be considered “archaic.”

I had to stop reading.  I stood up.  I left the room, walked around, drank some water and came back.  I could feel tears welling up.  I swallowed again.  I was aware that my hands trembled as I read “Seems to me a thinking person would keep an open mind and once you accept autism…there is no more thinking that occurs…just the acceptance.”  I couldn’t work out what that meant as there was no logic that I could get a firm handle on, but the feeling those words evoked was one of failure and shame.  I had to make a conscious effort to take a deep breath.  I felt the sting of her words, like a knife cutting me open.  I sat there and read the other comments and another from her, reiterating her stance, her position.  Her story, no longer a personal tale, but one given forth as though evidence in a court of law.  And her love shining through it all, triumphant, jeering, condemning.  Her actions and the outcome of her actions worn like a medal of honor, the purple heart of parenting, pinned to her chest, evidence of her supremacy.

I could no longer hold back my tears.  My tears, physical expressions of my inadequacies.  As I cried, as the tears ran down my cheeks, dripping off my chin on to my shirt, I closed my eyes and felt all those feelings of pain, of sadness, of shame that had nothing to do with autism, but are feelings I carry around, despite how hard I try to get beyond them, feelings I have had my entire adult life, long before I became a mother.  Those feelings of not being good enough, not being worthy, not being pulled together, not having all the answers.  Those feelings of being “less than” all of them came bubbling to the surface.  Those biting words from that commenter cut through the fragile dam I so carefully constructed for myself.

“You accepted… I fought…”

I am better than you.  My love is stronger, better… I love my child more than you do.

This is bullying.  Words used to personally attack or intimidate another person.  It makes us think we are not as good as someone else.  For me, her words took me back to all those years when I believed all those parents who spoke with assurance, with superiority, without doubt about something that could not be proven or even replicated, stories that are not based in any science, but are “one offs”.  All those false hopes I had and mistook for the real thing.  False promises that lead me down a path of tremendous pain, ultimately harming my daughter far more than helping her.  The biggest strides I’ve made that have positively impacted my daughter are when I was able to completely accept every aspect of Emma and put down the whip beating me to change her neurology.   This is not to say we do not do everything in our power to help her learn, teach her to care for herself and try to give her tools she can use to flourish.

Richard said to me the other day, “Parents are spending all this time and energy trying to teach their kids to be normal, when they should be teaching their kids how to be themselves.”

My husband is brilliant.

Emma – September, 2012

Expectations, Acceptance And The AutCom Conference

I am in the midst of preparing the presentation I plan to give at the AutCom conference Saturday, October 6th.  There will be lots of visuals and (hopefully) some humor. I intend to talk about our  journey from diagnosis to terror, despair, anger, determination, discovery, acceptance and HOPE!  I will keep it personal and hope that our story might resonate for other parents, while also explaining why and how the words and voices of Autistic people have so completely changed our lives.  (I use the word ‘our’, because it is not just my life that has changed, but Richard’s and by extension both our children’s too.)  I hope to illustrate the ripple effect of our actions, all of our actions and how important it is (to me) to do everything I can to change the way Autism is perceived.

I have found that in talks such as the one I am about to give, one walks a fine line between trying to share one’s personal experience and ‘lecturing’ or being seen as dictating to others how they should or shouldn’t behave.  I don’t know that I’ve always gotten that balance right, in fact, as I write this, I know I haven’t.  But there are a couple of points I know are universally important.  Things I can do and try to do – be honest and hold myself responsible for my actions.   While also being hyper aware of what Emma would say were she in the audience.  Am I saying anything that would wound?  Am I saying anything that might make her feel badly about herself?  If she were there, would she object?

On this blog I have shared all kinds of things about my past, my personal struggles, things that happened long before I ever had children because it’s important to me that people reading this blog understand, my “issues” are not caused by my husband or either of my children.  My issues are what cause me to react the way I do.  It is this baggage, some of which I’ve unpacked, some of which I continue to struggle with, that cause me to trip up and behave the way I do.  Neither my husband nor my children CAUSE me to lose my temper, feel sad, fearful, depressed or impatient.   I felt all those things long before I was fortunate enough to have a family of my own.

When I am feeling disgruntled about my life it is not because of my husband or children or anyone’s specific neurology, it is because I have expectations that have gone unmet.  Until I am able to fully embrace and accept myself, my life and everyone in it fully, I will grapple with feelings of discontentment and despair.  My level of annoyance and dissatisfaction are in direct proportion to my unmet expectations.  This is my life’s work.  This is what I need to be vigilant about.

Given all of this, it is particularly fitting that tonight Richard and I are going to a meditation workshop with our two favorite Buddhist teachers, Ezra Bayda and Elizabeth Hamilton at the Open Center.  Their lecture is appropriately entitled –  Freedom From Fear: A Zen Perspective.

Nic does the NYTimes crossword – April, 2002

Emma ‘reads’ the NYTimes – 2003

Finding That Sticky, Messy Area Between Perfection and Despair

“Compare Emma to Emma.  Don’t ever compare her to another child.”  This was said to me years ago by someone whose name and face elude me.  I was reminded of their suggestion this morning as I rode the subway to my studio and read the chapter by Lucy Blackman from Douglas Biklen’s terrific, must-read book, Autism and the Myth of the Person Alone  – “That is  best illustrated by asking each reader to describe the cultural or emotional characteristics of their own sex, whether man or woman, without any reference to the opposite, not even by implication, as if you were completely unaware that there is another set of options available.”

As the subway careened along beneath the streets of Manhattan, I reflected on this idea of not comparing Emma to anyone else or even to an abstract idea of anyone else.  What if I didn’t compare her at all?   “…without any reference to the opposite, not even by implication…”  What if I saw Emma purely as Emma?  “..as if you were completely unaware that there is another set of options available.”  What if I pushed out of my mind all those evaluations, the reams of “reports” the specialist’s conclusions, the pages and pages of “information” gathered over the last eight years?  What if all of it, every last word was meaningless?  What if I emptied our file cabinet of all that and started anew?

We live in a culture of comparing.  We look to our neighbor and envy their garden or, as happens in Manhattan, how many square feet their apartment is. We salivate over other’s imagined life, we covet that which we do not have and may never have, we pore over the lugubrious details of fallen celebrities and the train wreck of their lives, we gawk at the photos of dimpled hips, bellies, thighs occupying pages upon pages in magazines we may never purchase while in line at the supermarket, relieved that we are not the only ones whose bodies are not the chiseled, polished, perfection obtained through that impossible combination of genetics and a willingness to give over hours of our lives to a gym.  Yet we still feel embarrassment and shame when we go to the beach and uncover ourselves.

I spent a great many years perfecting just this sort of thinking.  I spent far too many years feeling alternately “less than” and “better than”.  Oddly there was equal measure of shame in both and yet I couldn’t figure out how to extricate myself.  It was one or the other, that sticky, messy area between those two points was much harder to occupy.  But it is that area I long to find my place in.  It is exactly that middle ground I now find myself reaching for.  “…as if you were completely unaware that there is another set of options available.”  That is what I strive for, when I think about and interact with Emma, but also in every area of my life.

“Compare and despair” is something I have heard people say.  I can illustrate this saying with countless examples from my life and yet, even now, knowing what I know, the temptation to compare is seductive.  How does it serve me?  This is the question I know to ask.  And I have the answer to this.  It doesn’t, but it is a habit.  Thankfully I am learning to stop myself when I catch myself comparing.  What I am coming to realize is, comparing is my knee jerk response to stress.  It is where I go when I’m tired.  It’s my default setting for when I’m overwhelmed, hungry, sad or just confused.  Repetition is how we acquire skill.  Repetition is how we undo learned behavior.  When I compare Emma to Emma I see tremendous progress, I see possibilities, I see limitlessness, I see the beauty in the small steps taken, I see a kind of poetry in her growth.  Challenge becomes subjective, goals are no longer solid lines but instead shimmery bands of light, something one moves in and out of, no longer a mountain to climb, but rather a place to visit and then move on.

How do I stop comparing my child?  By seeing her through a lens of wonder and curiosity.  When I am able to accomplish this, I have found true bliss.  A blissfulness Emma innately occupies and patiently awaits me.

Emma running through sprinklers outside the Museum of Natural History

The School Bus: How Do We Make Sure Our Children Will Be Safe?

Last week I wrote this – Emma Refuses To Get Off The Bus And A Self Advocate Is Born!  That Friday afternoon, I received a letter from the OPT (Office of Pupil Transportation) saying we had a new bus and route number for Emma and to call the bus company for a pick up time.  When I called they informed me I would need to call this morning to get a specific pick up time, but assured me that this time the bus was scheduled to take her to the correct school.   This morning I called and received their anticipated pick up time and told Em that I would go downstairs to wait with her.  Emma was noticeably and justifiably nervous about getting on another bus after last week’s mishap and so I consoled her by saying I would talk to the driver, make sure they were going to the correct school and see if they’d allow me to ride on the bus with her, just this once.

When the bus arrived I spoke with the driver asking that I be allowed to accompany Emma just this one time, given how badly things went last week.  The driver told me he’d have to get an okay from the company, despite the bus matron’s loud protests that this was not allowed.  Emma held onto my hand as we stood together on the sidewalk and waited while he called various phone numbers, each time being told I would not be allowed to accompany my daughter this ONE time.

I have to interrupt this narrative to say, this is not the first time we’ve had issues with OPT and the bus for my daughter.  A few years ago a driver picked Emma up and then, because it was summer and most of the children on his regular route no longer took the bus, he arrived at her school 45 minutes early.  Instead of telling the bus company and adjusting the pick up time or telling us so that we could call the company, he drove to a side street, parked the bus and waited for FORTY-FIVE MINUTES with Emma, the only child in the entire bus who had no idea why she was being held captive in an empty school bus on a side street for, what must have seemed like an eternity.  He did not try to explain to her what was going on, it did not occur to him (evidently) that being told to remain seated for that length of time might be distressing.  The only reason we even learned of this was because Emma came home from school that afternoon agitated and upset and because she is echolaic and is a terrific mimic and captured the driver’s voice and accent so that I was able to finally figure out why my daughter was scripting,  “You sit back down!  You have to WAIT!  I told you to sit down and be quiet!”  As there are no cameras on board, I had only Emma’s scripts to rely on.  We then called the bus company and our lawyer and Emma never rode with that driver again.

So this morning when the bus told me they would not allow me to accompany my daughter, I did not put her on the bus, but took her to school myself.  After numerous phone calls to the OPT, her school and the  bus company it was explained to me that they are not legally allowed to have parents ride the bus as it opens them up to all kinds of other issues, the least of which is if one parent is allowed, all parents then must be.  I get it.  Really, I do.  I understand.  But how do we move forward?  How do we make sure our children will be safe?  How do we entrust our children to people who may be given the wrong information?  How is it that there are no cameras on board busses taking Special Education children to school?  How is it that the State of NY does not have a law that ALL school busses have a GPS on their busses?  How is it that once our child steps on that bus, there is no way to supervise what goes on?

Tonight we will, once again do our best to prep Emma for tomorrow’s bus ride.  We will tell her that the bus is going to pick her up and will then pick up two more children, that they will then drop some of those children off at a different school, before driving Emma and the remaining children to her new school.  I have asked the school to have a familiar and friendly face greet her tomorrow morning.  I will do my best to reassure her.

I will tell her she is going to be taken to the correct school this time.

I will go over what she can do if she becomes nervous or scared.

And I will hope that she’s going to be okay.

Waiting for the bus this morning


Emma at the American Natural History Museum

The Art of Negotiating – Get Them to Beg

“Go to Natural History Museum with just Daddy,” Emma announced this morning.

Because of the Jewish New Year it’s a four-day weekend.  Richard took Em to the museum yesterday.  Today is my turn to hang out with Em, while Richard spends the day with Nic and his friend Masiah.

“I know you do love going to the Natural History Museum with Daddy,” Em said as I came over to her.

“But Em, I’m going to spend the day with you.  What do you want to do with me?”

“Emma loves Natural History Museum with Daddy.  But they wants Museum of Natural History with Mommy.  I love playing elevator game with Daddy.  Emma loves BioLife.  Emma loves…”

“Em, what do you want to do with me?  Daddy’s staying home today.  I can take you to the Natural History museum.  Is that what you want to do?”

“Go to Toys R Us with Mommy, then Natural History Museum with Daddy!”

“No Em.  It’s just you,” I pointed at her, “and me today,” I pointed to me.  “What should we do today?”

Emma whispered, “Go with Daddy!  Oh I know you want to go with Daddy.  Say bye-bye Mommy!”  Then Em made fish lips at me.  Meaning she puckered her lips together and pretended to be a fish.  This is what she does when she really, really wants us to acquiesce.

I began laughing.  “Em.  I will take you anywhere.  Anywhere you want to go.  I’ll ask Daddy to explain the elevator game so we can play it together.  Or you can show me how.”

“Go with Daddy,” Emma said very quickly and in a mischievous voice.  Then she whispered again, “Daddy, Daddy, Daddy, just Daddy!”

So I sidled up to her and whispered back, “Emmy.  Can I take you to the Natural History Museum?  Just you and me?  Please?”

Emma grinned and nodded her head.  “Okay, okay!”

When both the children were toddlers I took them to the Natural History Museum every single day, one memorable day we even went twice.  After a few years of this, I announced to Richard, “I hope never to set foot in that museum again.”

“Uh-huh,” Richard said.

“Ever.  Seriously.”

“Yeah.  Got it,” Richard answered.

“Never.  For the rest of my life.”

“OKAY!  I hear you,” Richard said with a touch of annoyance.

So for the last few years Richard has taken Em whenever she has asked to go.  I think I’ve gone once, maybe twice in the last several years.  That I now find myself  literally begging, BEGGING Emma to take her, is just another example of Emma’s brilliant negotiating skills.

If Emma ever loses interest in being a singer, I feel confident she will find any number of career options available to her… diplomat, anyone?

Emma – Autumnal Fairy

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“I Want to be a Singer on the Stage!”

Emma told us she wants to be a “singer on the stage!”  She said this a few weeks ago and repeated this desire last night.  Richard and I are doing and will continue to do all we can to support and encourage her desire.

Emma’s love of costumes and theatrics, coupled with her love of music, performing and singing in front of an adoring audience will go a long way in helping her achieve this lofty goal.  It is the perfect window by which we can enter to help her acquire language, encourage her reading, writing and typing.  I am starting to print out the lyrics to her favorite songs (reading) and find other ways to encourage writing (lyrics? poetry?) or anything else she might find motivating.

Emma dressed as a knight

Emma in her flamingo costume with her favorite Alien doll

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Emma Refuses To Get Off the Bus and A Self Advocate is Born!

Monday morning Richard and I awaited Emma’s school bus.  I had prepped Em the night before.  “Okay, so Em.  The bus is going to come and it’ll pick you up and take you to your new school, okay?”
Em nodded her head.
“When the bus gets to your new school, it’s going to let you off in the front and there will be someone to meet you.  They’ll take you into the auditorium where your teacher will be waiting for you.”
“Go see Katie!”
“Yeah and Katie will take you upstairs to your classroom.”
“Go with Mommy!”
“No, Em.  I can’t go on the bus with you.  They won’t let me.  But I’ll wait for it with you, okay?”
“Okay.”

Emma bounded back and forth on the sidewalk in front of us as we waited.  When the bus pulled up Em ran up the steps, we spoke with the driver, who reassured us we had the correct contact info for her and as the bus pulled away I waved, remarking to Richard how nice it was to have such a friendly driver.

Forty five minutes later the bus driver called, saying Emma was very upset and refused to get off the bus.  “What?”  I heard Richard say.  “Well that’s because you’ve taken her to the wrong school!” There was a pause.  “Uh-huh.  Yeah, well it’s good she didn’t get off because that’s not her school.” Meanwhile I began talking to Richard as though the driver could hear me.  “They have to bring her home and they need to tell her what they’re doing.  She’s probably really upset and confused.  They need to tell her…”  Richard thrust the phone at me.

To the apologetic driver I said, “I’m sure Emma is upset.  May I speak to her?”

I could hear the driver, who was clearly upset herself say to someone, “hand my phone to her. No it’s okay.  Give her the phone, it’s her Mom.”  And in the background I could hear Emma’s anxiety laced voice repeating, “No I don’t want to get off the bus.  Emma goes to new school!”
“Your mommy’s on the phone, honey.  Here…”
Then I could hear breathing and Em’s voice very quietly said, “Mommy?”
“Emmy, Emmy!  The driver made a mistake.  They’re going to take you back home now.  I’m waiting for you.  Okay?”
“They go wrong way.  Emma said, no!  NO!  I don’t want to go to old school.  I want to go to new school!  I don’t want to get off the bus!”
“That’s right Em.  You did the right thing.  You told them they were going the wrong way.  They’re going to take you home now.”
“Go home, see Mommy!  I’m going to be right back!”
“Yes, Em.  I’ll see you in a few minutes.  I’m waiting for you.”

When I got off the phone I looked at Richard and said, “Wow.”  We looked at each other.  “She advocated for herself.  She totally advocated for herself.  Wow!”

When the bus arrived, returning Emma to me, I gathered her in my arms and said, “Em!  I am so proud of you!”
“No not this way!”  Emma pointed east toward her old school.  “You go wrong way.  You have to go this way!”  Emma said, pointing west, toward her new school.
“You are so awesome, Em.  If they had listened to you, you could have directed them to your school!  You advocated for yourself!  You told them they were going the wrong way.”
Emma beamed.
“You did the right thing!  You refused to get off the bus.  I’m so proud of you!”

By the time we got upstairs Emma was smiling and laughing.  Richard congratulated her on standing up for herself and for trying to make them understand.  With each compliment Emma’s smile grew wider.

By the time Richard had gathered his things to take her to her new school, Emma was happy, repeating the things she’d said to the bus driver.  It wasn’t until she came to say good-bye that I saw the teeth marks on her hand.

“Hey Emmy, I said, holding her close.  “Did you bite yourself?”
Emma nodded her head.  “Emma screamed.  Emma was frustrated!”
“I bet you were.  You were trying to tell them they were going to the wrong school and they didn’t listen.”  I stroked her head.
“Emma goes to new school now!”

“Yeah, Em.  You’re awesome. I am so, so proud of you!”

As she and Richard left, I thought about all our children who are trying so hard to communicate and yet aren’t being heard.  I imagined Emma sitting on that bus trying to make them understand that they were going the wrong way.  Using the right words, but not being understood. And finally, because no one was listening, no one was considering that she actually knew what she was talking about, she began to scream and bite herself.

My dream for Emma is that she be able to advocate for herself.

Now she is and I could not be prouder.

Em and the School Bus

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