Monthly Archives: April 2012

Running with Mermaids

When Emma was a toddler she had a mermaid finger puppet.  It had long black hair, sported a blue bikini top and had a blue sequined tail.  At the time, I thought it was the first of what would be many dolls.  I loved dolls when I was little.  My favorite doll was named Maribelle.    Her left hand, the victim of my rage when I was four and hacked off three of her fingers with a pair of pruning shears was a reminder of anger gone awry.  I immediately regretted my actions and attempted to glue her fingers back on.  Crazy glue was not the common item found in every tool box as it is today.  My options were Elmer’s and rubber cement, neither of which could repair the damage.  I then tried tape with no better results.  At some point the fingers were lost or I threw them away, I can no longer remember.  Mirabelle’s fingers, while physically gone, are forever etched in my conscience, an impulsive act I could not undo.  Still, I loved Mirabelle and though I eventually moved on to a series of other baby dolls, little girl dolls and finally Barbie dolls, my first love was Mirabelle.  All these years later Maribelle resides in the blue and silver striped trunk she originally came in, now in an upstairs closet  in my mother’s house.  I have never been able to part with her, my thinking was that if I had a daughter, perhaps she would one day want to have her.

When Emma showed interest in the mermaid, I had high hopes for Mirabelle’s return.  Only, it turns out, Emma’s mermaid did not hold the same sort of feelings as Mirabelle had for me.  The mermaid was the beginning of a series of objects that Emma was fascinated by.  The item that eventually replaced Emma’s mermaid was The Corpse Bride from the Tim Burton movie with the same name.  Then it was Jessie from Toy Story and after that a long stick picked up from the playground.  From there she gravitated to a series of sticks, balloon strings and her current favorite: packing string.  The packing string is a work in progress, held together in the middle with masking tape, then scotch tape, which was then covered in reinforced packing tape and finally covered in turquoise duct tape.  When we were at Granma’s house, Emma covered the turquoise duct tape in masking tape she found in a drawer in my mother’s kitchen.  When we returned home, Emma covered the masking tape with yet another layer of the turquoise duct tape.  It has a certain heft to it and looks like this.

I know a little more than I did when Emma first ran back and forth from our front door through the house and back to the front door with the finger puppet held between her thumb and index finger, the mermaid’s black hair swinging to and fro as she ran.  Today Emma holds her “string” as we call it, in her hand while dancing.  Her string serves as part security object, part stim object, part something else that I am still trying to figure out.  “An attachment to peculiar objects…” is one of many characteristics of autism, but when Emma was little, it was just a mermaid.  Who knew?

To read my most recent Huffington Post piece, click ‘here.’

An Easter Party and An Excuse to Wear a Pretty Dress

Emma and I did some work yesterday morning, on her reading, writing and typing.  This is the “story” she wrote:

“I can’t wait for our Easter party!

I am going to wear a pretty dress.

I love to wear pretty dresses.

I am excited to see Max. I am excited to see cousin Alexandra and Jackie too.”

Sadly, I do not have a photograph of Emma wearing her pretty party dress because I got a late start on cooking, what with decorating Easter eggs to resemble farm animals…

and birds…

bird's nest

of all types…

There were chocolate eggs that needed to be hidden for the Easter “Egg” hunt, thankfully Richard did a superb job with that and came up with some very creative places to hide them, including inside one of our speakers, where they will remain lodged forever.  We invited 13 people over due to arrive at 5:00PM  and I was way behind schedule, hadn’t prepared the roasted vegetables, fixed the leg of lamb, prepared the biscuits, the appetizers or the berries and whipped cream and it was already 3:00PM. (Gulp!)

Emma donned her pretty party dress and whirled about while listening to a medley of her current favorites, MIchael Jackson, Dionne Warwick, The BeeGees and Led Zeppelin.  You have to hand it to her, the kid has a wide and varied taste in music!

Emma had been looking forward to our “Easter Party” for weeks.  We had gone over the list of people countless times.  She fixated on a few of those people, talking about them over and over again.  We did a countdown of how many hours until they would arrive.  And then when the first person arrived Emma squealed in delight and raced to the door.  When cousin Alexandra arrived, Emma could barely look at her, she was so overwhelmed.  The same happened when Jackie appeared.  It was as though it were all too much.  The very sight of these much anticipated arrivals was more than she could take.  “Max is coming!” she said over and over again.  Max had called ahead to inform us that he would be late.
“Yes.  Max will be here in another 20 minutes or so,” we answered.

“Max is late,”  Emma stated, nodding her head and looking sad.

“But he’ll be here soon,” we reassured her.

When Max finally arrived, Emma put her hand in front of her eyes, as though he were as bright as the sun and the glare was too much for her.  Meanwhile I was busy getting the leg of lamb out of the oven and serving everyone a cheddar-chive biscuit.  “Where’s Em?” I asked Richard at one point.

“She’s hiding,” he said.

I found Emma crouched behind the couch, her head down, almost touching the floor.  “Emmy, what are you doing?”  I asked.  When she didn’t respond I said, “Come sit with us at the table.”  Reluctantly she sat down, next to Jackie and across from Max.  She kept her head and eyes lowered and wouldn’t look at either of them.

After an hour or so, Emma was able to raise her head and began playing various games with Max.  By the end of the evening she was beside herself with excitement, fully engaged and talkative.  She said good bye to each guest as they departed, and when Max left she walked him to the door and said, “Bye Max!”  and then she blew him kisses.

For more on Emma’s journey, go to:   Emma’s Hope Book

 

Autism Acceptance

Paula Durbin-Westby is an adult autist, an advocate, a writer, blogger, and mother. She writes extensively about autism on her blog – Autism Acceptance Day.  I had planned to do a series throughout the month of April of Autistic writers discussing autism, “awareness” and acceptance, which I planned to submit to the Huffington Post.  However, HuffPo does not take “guest bloggers” and as I hadn’t gotten permission beforehand, this piece from Paula was never printed.   I am printing it here, instead:

This article introduces a new celebration for the month of April: Autism Acceptance Day.  First, the background.  Autism Awareness month has been around for quite awhile.  Unfortunately, much of the deluge of “awareness” has been demeaning and even discriminatory.  Many Autistics have written pieces on the theme “April is the cruelest month.”  Parents talk about wanting to turn off the TV during April so their Autistic children will not have to see the alarmist statistics and “medical mystery” reporting.  Autistic friends, weaving their way through a barrage of autism “warning” signs placed prominently on campus, talk about how they can’t wait for April to be over.

In 2008, the UN declared April 2 World Autism Awareness Day.  A year later, in September 2009, during an autism conference the UN showed a video called “I Am Autism,” which portrays autism as a demonic persona that threatens harm to parents and families. In one section, voices chime “We are the United Nations,” showing people from many nations who will stand up to “autism.”  It was outrageous.  The United Nations, by showing this film, violated its own principles in the UN Convention on the Rights of Persons with Disabilities.   The UN wrote in Article 8, and I quote, “As a change of perceptions is essential to improve the situation of persons with disabilities, ratifying countries are to combat stereotypes and prejudices and promote awareness of the capabilities of persons with disabilities.

Against this backdrop, I organized the first Autism Acceptance Day in 2011.  Autism Acceptance Day was to be everything that Autism Awareness Month was not. Rather than “awareness” that insults and even damages the life chances of Autistic people, I promoted complete acceptance, not just mere tolerance. As Autistic activist Nick Walker puts it, “If it doesn’t involve acceptance of autism, and acceptance of autistic people as autistic people, you don’t get to call it “autism acceptance.” I was tired of my friends being hurt, and dismayed at the media and parent- and researcher-led autism organizations portraying autism and Autistic people in what my nine-year old calls a “despicatizing” light.

Autism acceptance means an active acceptance of neurodiversity. Neurodiversity sometimes gets a bad rap, but it’s really fairly simple: neurodiversity encompasses all neurologies, from “typical” people to those who have a variety of neurologically-based differences and disabilities. We support all people with disabilities, even though our emphasis is on neurology. We assert the worth and dignity of every person, no matter what their disability or level of disability, including people with significant disabilities. Our aim is not to gloss over the very real difficulties that people with neurologically-based disabilities face. Our focus is on access to services, supports, education and employment opportunities. We support the development of communication systems, a high priority for Autistics, some of whom do not speak, and many of whom do not have reliable access to language-based communication at times.

The first year, Autism Acceptance Day was primarily an online, Facebook event. I started a blog so that people who were not on Facebook could read about Autism Acceptance Day and participate. Over 1000 people signed up for the Facebook event. This year, as more people made plans and expanded on the idea, I wrote – “It’s time to take back April!” ASAN did a series on its blog and there were other events and activities.

Like any other community, the Autistic community and our supporters have developed expressions of community involvement.  Some events are celebratory; some are not.  On March 30, people attended candlelight vigils to mourn and remember people with disabilities who have been murdered by family members or caregivers. The vigil effort was organized by Zoe Gross. An online vigil was implemented as well.  As with other minority communities, a sense of identity, pride, and accomplishment, as well as a time to pause and reflect, is a way to build upon our strengths, learn to work together to promote our own interests and concerns, and ultimately to foster a greater societal acceptance of people with disabilities including autism.  Sadly, the day after the vigil, Daniel Corby, age 4, was murdered.  We still have much to do toward acceptance of Autistic people.

Sleepovers, Siblings and Autism

I have to begin by pointing out our redesigned, upgraded and improved site!  (If you could see me I look like Carol Merrill in front of door #1 on Let’s Make a Deal.  I’m waving my arm up and down, pausing at all the new, awesome features, while smiling invitingly.  Okay, totally dating myself on that one.)

A few months ago my cousin, Peter and his wife invited Emma’s older brother, Nic to come to their home for a “sleepover.”  On the designated and much anticipated afternoon, Nic and I took the subway uptown to their home.  I got Nic settled and discussed when we should come to retrieve him.   It was decided that we would all come the following morning for a breakfast of pancakes and then be on our way.  (My cousin is actually close to my mother’s age, yet I feel particularly close to him and his wife.)

When I returned home Emma had just returned from a full day of activities.  We had told Emma that Nic would be spending the night with “cousin Peter and Susan” several days before and she seemed to take it all in stride.  The next morning as planned we went to pick up Nic, ate a lovely breakfast that Susan had prepared for us, and left, thanking them profusely.

Yesterday, now at least a month later if not more, Emma announced, “Go sleep over at Susan and Peter’s house.”

Thinking she meant that she wanted Nic to go there again and that she had so enjoyed our night with Richard and me all to herself, I said, “Oh!  You want Nicky to go back to Peter and Susan’s house?”

“Yeah!”  she said, nodding her head vigorously.  Then she came closer to me and said, “Go with Nicky?”

“You want to go with Nicky to Peter and Susan’s house?”

“No.  Just Emma.”

Confused, I said, “You want to go to Peter and Susan’s by yourself?”

“Yes.”  She looked at me expectantly.  “Spend the night at Susan and Peter’s!  Nicky stay home.”

It was one of those moments when you feel overjoyed, but also filled with sadness.  How could I tell her this was unlikely to happen?  How could I explain that Peter and Susan might not invite her?  How could I explain that this was not something I could ask them to do?  As my mind whirled around trying to figure out how to respond, Emma began to cry.

“Go to Peter and Susan’s house.  Sleep at Susan and Peter’s house.  Tonight.”

The longer I remained silent the more she upped the ante.  I glanced over at Richard with a look of desperation.  A look that said – how are we going to deal with this?

Richard explained that tonight we were going to have dinner and then go up on the roof.  We brought out a calendar and ticked off the upcoming activities we had planned.  We tried to explain to her that we couldn’t invite ourselves over to people’s homes.  (This was way to complicated and too much information.)  And the whole time I kept thinking how do we explain?  How do we say this simply?  As she became more fixated on the idea, she began repeating it over and over again in between tears.  Everything we said, “Not tonight, Em.”  or “Maybe over the summer,”  did little to satisfy her.

Eventually I brushed her and did joint compressions.  She seemed calmed by this and we talked about pressure and how she prefers firm long strokes, not light strokes.  We both did some breathing exercises together and the fixation on going to her cousin’s house seemed to dissipate.  Later Richard put on music for her and we danced.

After I had put Emma to bed and read stories to her, I said to Richard, “You know there’s a really positive side to this.  She’s showing her desire for independence.  It’s pretty amazing.”  We discussed how this represented so many terrific leaps forward for Emma.  She is eager for more independence, is cognizant of Nic having sleepovers, and wants to have that experience too.

It’s all good.  (Where did that expression originate, by the way?!)  But it is.  It’s all good.

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

For my latest Huffington Post:  HuffPo

Murder, Fear and Hope

An autistic child has been murdered.

Again.

His name was Daniel Corby.  He was 4 years old.

(The following is by no means a cohesive or complete list.)

March 2012 – mother kills George, her 22 year old autistic son.

August, 2011 – mother shot and killed her 13 year old autistic son, Ben.

July, 2011- mother strangled her two autistic children, a 2 year old daughter and 5 year old son.

May 2011 – mother kills her autistic son, Glen by strangling him with the belt from her coat.

February, 2010 – mother killed her 8 year old autistic son, Jude.

2010 – Mother kills 6-month old son, Rylan because she suspected he might have autism.

2009 – Father kills 11 year old autistic son, Jeremy.

2009 – mother withholds medication from her autistic son, Jeremy who has leukemia.  Jeremy dies as a result.

Our outrage, our pleas that these murders stop, our desire to blame, rationalize or even understand will not bring any of these children back or prevent another parent from murdering their child.  What can make a difference is a change in the way we as a society view autism and autistic people.

The word “autism” causes fear.  So little is actually understood about autism and so much of what people hear are theories, it is natural that people would find autism frightening.  We fear what we do not know or understand.  This has been true throughout history.  The ever changing “statistics,” the words used to describe autism, the vastness and mutable nature of the spectrum, how indefinable it is, all add fuel to the fear.  It doesn’t have to be this way though.  And that is where there is tremendous hope.

A year ago I regularly lay awake at night worrying about my daughter, Emma’s future.  I knew of very few adults with autism, I had read everything written by both Donna Williams and Temple Grandin, but their experiences seemed far removed from my daughter’s.  All of that changed when I began following blogs written by autistic adults.  I had an “aha” moment.  The moment of realization and understanding when what was once abstract becomes real.  A friend of mine told me of her “aha” moment during an autism conference she attended where she saw a nonverbal young man who reminded her of her son.  He had the same gestures, the same stims as her child.  She imagined this was her son in 15 years and she was filled with despair.  The following day she returned to the conference and attended a workshop on facilitated communication, led by…. none other than the young man she’d seen the day before.  Only now he was communicating his thoughts.  His words were intelligent, articulate and heartwarmingly beautiful.  She left the conference in tears realizing how she had underestimated this young man, as well as her own child.   She vowed never to do so again.

Assume competence.  Even if there is no “proof” that our neuro-typical minds can hold onto, we must assume competence.  Because to do otherwise is to fail our children.

I have written about much of this at length in other posts, so I am not going to continue now, but I strongly urge anyone who is frightened to read the blogs written by autists.  The veil of mystery may be lifted.  It was for me.  Reading the words of autists alleviated my worries.  Here were adults who were leading the way, so that those, like my daughter, Emma, might not have to. My life, so long dominated by fear is now dominated by hope.

There is a large and thriving community out there of both autists and parents of autists who are writing, blogging, commenting and reaching out to one another.  The only requirement to join this community is a desire for connection.  Because of the internet, we all have a support system if we want it.  No parent or autist need feel alone.  The autists are the ones who can and will change the current perception of what it means to be autistic.  They are writing and speaking forcefully, beautifully, with eloquence and power.  I have said this before, I will say it again:  We must listen to them.  They need to be included in any discussion, organization or conference regarding autism.  More importantly, they need to be included, period.  Some parents have said to me – but they have blogs.  They can talk.  They are articulate, while my child is non-verbal, self-injurious, cannot attend to his basic daily needs.  And my response is – Yes, that is exactly why we must listen.   Just because some of our children cannot speak or those who do may not be as articulate, doesn’t take away from the fact that these autists can and do.  If our children could speak as eloquently – how do we know what they would say?  If they could speak, wouldn’t we listen?

The following is a list of wonderful blogs that have literally changed my life:

Aspie Rhetor

Autism and Empathy

Autistic Hoya

Dude, I’m an Aspie

I’m Somewhere Else

Journeys with Autism

Juniper Hills Farms

Just Stimming

Life With Aspergers

Moonlit Lily

Quirky and Laughing

ThAutcast

The Autistic Me

The Third Glance

For parents with non-verbal autistic children:

Read any book written by the autist Tito Mukhopadhyay

Carly Fleishmann

Another youtube video of Carly

Interview with non-verbal autistic adult

In addition, for anyone who has an autistic child no matter where they fall on the spectrum, please read this interview with Henry Markram on his Intense World Theory for Autism.  It is the first time I’ve read a “theory” that validated everything I felt I saw in my daughter, Emma.

We may not be able to stop parents from murdering their children, but we can change how people view autism.

We must not succumb to fear.  Hope is all around us, we need to stop and listen.

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

For my most recent Huffington Post piece, go to:  HuffPost

New York City Subways and Musings on Autism

Yesterday afternoon I received the following text from Emma’s therapist Joe – “Heading your way.  Em had a rough day after museum trip.  Wants to see you.”

First of all, I’d like to point out that the fact that Emma was able to communicate to Joe that she’d had a rough day is a massive leap forward.  Secondly that she was able to then make it known that what she now wanted to do was see me was nothing short of amazing.  It required her to identify her feelings.  It required her to map out what might make her feel better.  It required her to verbally put together the words in such a way that they would be understood.  It required her to then make her request.

Yesterday morning on the subway headed to my studio I was reading the memoir by the autist, Rachel Cohen-Rottenberg, Blazing My Trail on my ipad.  It’s a wonderful book, for those who don’t know of it, and had fully captured my attention when I felt a light tap on my arm.  I looked to my left and there sat a woman, about my age or maybe a bit younger dressed in a suit, clasping a briefcase.  “Excuse me,” she said.  “I get claustrophobic in subways, especially when they stop and it helps if I have someone to talk to.  Do you mind?”

“Oh,” I said, surprised by her directness, but also relieved that she seemed genuine (this is New York City after all) and was clearly frightened that our train had come to a halt in the middle of the tracks, something I hadn’t even noticed until she tapped my arm.  I closed my ipad and turned toward her.  “Sure,” I said. Not at all sure what to say next, but because I had just been reading Blazing My Trail in which Rachel Cohen-Rottenberg talks about wishing people would just ask how they might help, I asked, “What can I do?”

“Just talk,” she said, then to help me along she motioned to my ipad, “What were you reading?”

So I told her about the book I was reading and how wonderful it was.  We then talked briefly about autism, something she knew almost nothing about. I asked her where she was headed.  She told me about a business meeting she was on her way to at Rockefeller Center and how she was nervous about it.  And then the train began to move again.  She took a deep inward breath and exhaled, shutting her eyes momentarily before opening them again and smiling at me.  “Thank you for being so kind and talking to me.  You have no idea how much it helped.”  At the next stop she got up.  I wished her luck and she disappeared.  As I sat watching her leave I thought about how great it was that she had figured out what she needed to do to help herself through what was clearly a stressful situation.  And then I thought about Emma.  I thought about how I hoped Emma would one day be able to express herself in a similar way.  I thought about Rachel Cohen-Rottenberg’s memoir and how she has learned through a great deal of trial and error to get her needs met and I thought about how hard it is for so many of us to know what we want let alone muster up the courage to ask for help.

Not eight hours later I received Joe’s text – “Em had a rough day after museum trip.  Wants to see you.”

Wow!

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

Pain, Air Pressure and Autism

Emma woke up in the middle of the night crying.  Her screams of pain, the result of intense pressure in her ears, were like the sounds of an animal under attack.  Last night, having read about the intense sensory issues many people on the spectrum must continually cope with, an intensity we neuro-typicals have difficulty understanding, I felt that I finally understood.  I “got it” in a way that I hadn’t until now.

For years Emma has, periodically, complained about her ears.  When she does we rush her off to various doctors and specialists, only to be told that there is “nothing wrong.”  But those words are being said by neuro-typical doctors and specialists and to a neuro-typical there is, indeed, nothing “wrong.”  But Emma is not neuro-typical, what appears fine to us, does not feel fine to Emma.  She is particularly sensitive to the changing air pressure.  She feels unbearable pain in her ears.  We cannot predict when this will happen, though I suspect the pain she experiences is exacerbated when she spends a great deal of time in the pool swimming, as she did these last few weeks while in Colorado.  Emma loves swimming.  She particularly loves jumping off the diving board and swimming under water.  I could be wrong, of course, but my guess is, the pressure is worsened with those activities.

Last night by the time I’d woken up and gone to her, Richard had already calmed her down.  When she saw me she came to me and wrapped her arms around me, her cheeks still damp from her tears.  She preempted me by saying,  “Ah, baby.  I know, I know.  Your ears are hurting.”  Her voice sounded almost exactly like my own.  She was using the words I use.  She was saying those words with the same tone I say them.

I held her for a few seconds before following her into the bedroom.  I urged Richard, bleary and exhausted to go back to bed, while I sat with Emma.  “Have to go see nurse Mommy,” Emma said, stroking my arm.  “Go aaaaahhhhhh!” Emma made a pretend cry.  “Mommy come!  Mommy come.  I need help!  AAAAAHHHHH!”  Emma continued in a soft voice, reenacting what had happened just moments before.  “Daddy says – you have to blow your nose. Oh, I know, I know it hurts.”  Emma nodded her head up and down.  “Mommy’s here!  It’s nurse Mommy!”  Then she lay her head on my lap, pulled her blanket up around her shoulders and began sucking her thumb.  As I sat with her in the dim light of her bedroom, her head in my lap, stroking her hair I wondered what must it be like to feel a sudden shock of pain caused by something you cannot see or stop.  No matter how much you cry out for help, it isn’t lessened.  I tried to imagine, what that must be like.  How frightening that must be.  How upsetting to be the only one feeling it.  How disorienting.  As I sat there I became aware of the air pressure.  I could feel the pressure in my own ears, not painful, but uncomfortable, building the more I concentrated.  And I found myself wondering what would it be like if I felt this all the time?  How distracting it must be.  What if I felt this, but much more intensely?  What if I felt this pressure, but the pain was excruciating?  How terrifying, while hoping that someone could remove what was causing the pain.

Only we can’t.

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

Autism “Awareness” and a State of Bliss

I’m having “a morning.”  You know, the kind where, despite how organized you are, despite how well you laid everything out the night before, everything seems to work against you.  So rather than go on a rant, enumerating all the things that have managed to go “wrong” in the last three hours, I’m going to reflect on Emma.  Because Emma is a very, very happy little girl.  In fact, unless Emma has gotten into a perseverative loop about going to the zoo or someplace that she has become fixated on and feels she cannot do without, she is in a state of bliss.  It is the sort of blissful state achieved by gurus, yogis or LSD, or so I’m told.  Yet Emma comes to this place naturally.  She does not have a “practice,” she does not sit cross-legged staring at a fixed point for an hour each day, she does not meditate, feeling euphoric if she managed to pause the endless chatter in her head for even a few seconds, no, Emma is full of joy almost constantly.

Today is Autism “Awareness” day.  It is a day that was intended, and no doubt with the best of intentions, to bring much needed awareness to the larger community.  Yet, instead it has become a day that many of us dread.  Instead of bringing awareness about what it means to be autistic, we are bombarded with frightening statistics.  Statistics that many will read and then, feeling helpless, will turn the page.  I’m all for awareness, but let’s then be aware.  Let’s be aware that our society does not embrace those with disabilities.  Let’s acknowledge that our school systems are failing our autistic children.  Let’s look at our government and exactly what is being done to help those who are autistic.  Let’s take a good hard look at autism. Let’s look at the prejudices, the bullying, the marginalization of people on the spectrum.  Let’s take a good hard look at ourselves.  Are we assuming incompetence when confronted with someone who makes grunting noises, whose speech is garbled, who flaps their hands, or doesn’t look us in the eye?  When someone cannot speak do you assume they have nothing to say?  When you see someone, on the airplane, in the playground, sitting next to you on the bus or subway, who is acting differently, do you move away?  Do you feel irritation?  Do you feel annoyed?  Do you feel impatient and wish you’d gotten onto a different car or bus?  Awareness begins with each of us.  Awareness is more than lighting something up a given color.  Awareness begins with being open.  Awareness means stopping and examining our beliefs.  Awareness means asking questions.  Awareness begins with each of us.

Awareness.

It’s a great word.

Let’s not allow it to become meaningless.

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