Tag Archives: autistic kids

What Matters

Posted on August 23, 2011 by | Leave a comment

We are leaving soon.  Back to New York City where our other life awaits us.  The children need to get ready for a new school year, medical forms need to be filled out, bus companies need to be contacted and confirmed, school supplies need to be bought.  Nic will be entering 6th grade and there’s a certain excitement in that.  Emma doesn’t enter a “grade”.  She will be placed in a class with other children on the spectrum, who are near to where she is academically.  I am always filled with trepidation at the start of a new year regarding Emma.  It is difficult not to give in to fears and worries.  Will she excel?  Will her new teacher and classroom be a good fit?

The truth is, Emma has progressed more in the past seven months than she has in five years.  We attribute this to the literacy program we began in January of this year.  We have now added a math program as well as a verbal program.  Emma is working each day for about three hours on these various programs.  It has been amazing to witness.  Progress.  This is the word every specialist we’ve ever spoken to has used.  Is she progressing?  And the answer to that question is a resounding – Yes.  We cannot predict what the future holds for Emma.  We cannot know how far she will go.  But as long as she continues to progress we know we are on the right track. I heard someone say once – Progress, not perfection.  It’s an apt thought for any of us.

Emma at dusk last night

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

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Deficits and Assets – Autism

Posted on August 19, 2011 by | 2 comments

It is easy to see what’s wrong – with the world, with other people, with ourselves.  When Emma was diagnosed with autism we were told about all that was “wrong” with her.  Her deficits were listed with great care:  Her eye contact was weak.  She showed little interest in interaction with others, she didn’t point, she didn’t ask questions about others, she showed little awareness of others, she seemed oblivious to others pain or feelings.  Her verbal skills were delayed, her fine motor skills were delayed, her ability to play, to project, to engage in any sort of fantasy or pretend play was almost non-existent.  The list went on and on.

But what of her assets?  What about all the things she did that showed tremendous creativity and intelligence?  Where was the balance in her many and varied evaluations?

When Emma went to a Special Education Pre-School I met a little boy who couldn’t have been older than three.  He was pointing to all the signs in the building and reading them.  I exclaimed to one of the therapists standing nearby how incredible this seemed to me.  She then told me he was hyperlexic and that they discouraged him from reading as it wasn’t “normal”.

I have never forgotten that.  Here was a child with an unusual ability.  A talent that could be used to further his education and perhaps interests and yet it was being discouraged.  Is that what we want from our children – to be “normal”?  What do we sacrifice in our attempts to “fit in”, to adapt, to be like everyone else?

Emma has a beautiful voice and a love of performing.  If we have guests over she asks to “sing a song” for them as she did last night.  Sometimes she needs to be reminded that the song must eventually end as she can get into a loop, singing the same refrain over and over again.  She hasn’t mastered the whole concept of “losing ones audience”.  But we encourage her singing and desire to perform just as we encourage Nic to practice his Alto Sax and the piano.  Emma has a great many assets, things she loves doing over and over again.  With Nic we use the word “practicing”, with Emma we say she is “perseverating.”  Yet in her perseveration Emma is practicing as much as Nic is.  The difference is, Emma will do the same thing over and over again for hours, whereas Nic will practice for 20 or 30 minutes and move on to something else.

Last night as guests began to arrive, Emma was upstairs in her “study room”, sitting on the floor in her party dress writing.  When I went upstairs, this is what I saw.

She was talking to herself and picking up each piece of paper then reading it before placing it back down and moving to the next.

As we had run out of lined paper, she had made the lines herself, before writing the sentence – The kids can hug.

Now this scene isn’t exactly “normal”, on the other hand very little in our household is.

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

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Skateboarding – Autism

Posted on August 17, 2011 by | Leave a comment

When Emma was a toddler, she taught herself how to swing by herself.  She thrust her legs out in front of her and then leaned her body forward as she tucked her legs under her.  It was an amazing and beautiful thing to witness.  I remember the first time it happened, we were in the Washington Square playground in New York City.  She pushed me away as she clambered up onto the swing.  I stood just to the side and behind her ready to push, but she shook her head no.  Then she reached down with her toes to the ground pushed off.  A small group of caregivers and parents gathered around as she sailed up higher and higher, so incredible was it that a child of just eighteen months could swing so high unassisted.

That’s how it is with Emma when it comes to physical things.  She has always insisted on doing things herself and while she can take direction, it is often very difficult for her to be taught by someone who relies on verbal explanation.  Emma feels and learns from watching and doing.  So when she put her arm around her brother, Nic the other morning at the skateboard park and said, “Nicky’s turn, then Emma’s turn,” we knew we were going to have to get creative if she was going to learn to skateboard.

We spoke to one of the instructors from Nic’s skateboard camp and arranged a lesson for Emma that afternoon.  When we finally went to meet him, we realized we hadn’t brought sneakers for her to wear and so bought a new pair at the skateboard shop.  They didn’t have any socks small enough for her, so she just wore the shoes without socks, despite my fleeting concern that she would get blisters.  With borrowed skateboard in hand, we headed to the skateboard park, Emma leading the way.

The instructor got her to put on elbow, knee and wrist pads and then together they slid into the bowl to practice foot positioning.  Emma wanted to skateboard though and didn’t want to practice standing on the board.  She wanted to go.

In this way Emma is fearless.

And then the blister on her heel became too painful and she tried to take her shoes off.  From there the lesson took a downward turn and after another ten minutes or so, Emma had had enough.  I am convinced that if we just let Emma experiment on a skateboard for awhile, she’d eventually figure it out on her own.  Just as she did so many years ago on the playground swing, and later with her scooter.  But for now, we will let her dictate how this goes.  If she shows interest in skateboarding again, we’ll try to borrow one for her to practice on.

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

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Bumps In The Road

Posted on August 12, 2011 by | Leave a comment

Inevitably in life we have all experienced things that have forced us to slow down, perhaps take another route, do things differently than we would have liked.  I think of these things as bumps in the road.  I try to refrain from judging them as good or bad, but just as the way things are.  There are some moments I’m better at achieving this kind of calm perspective than others.  It’s easy for me to feel all that is happening at work is “horrible”, but the truth is, a series of events have been set into motion and I have had to make the decision to fight back, to defend myself or allow another person to harm me and in harming me, harm my family.

Emma experiences her own “bumps” along the way.  Things that happen, which force us to change well laid plans.  Plans she is excited about and is looking forward to.  But more and more, lately, Emma has taken these things in stride.  She is learning to adapt to a world that is often precarious, constantly changing and shifting.  It is a wonderful thing to witness.  We all must adapt to our ever changing circumstances.

Emma makes me happy –  Both my children do.  Try not to smile while looking at this next photograph.

I dare you.  No smiling.  Come on, it’s impossible not to feel a tiny degree of joy, right?  I love that.

Here’s another photograph that can’t help but bring a smile to my face.

This was done yesterday during Emma’s “study room”.  She is writing longer and more complex sentences.  Her reading is coming along beautifully.  Excuse me while I jump up and down with excitement!

So no matter how heinous things get at work, I have my family.  My beautiful, amazing family – and that’s all I need to bring things into the proper perspective.

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

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Emma’s Rainbow

Posted on August 11, 2011 by | 2 comments

One of the wonderful by-products of this mess at work is that I am spending every day with my family.  Yesterday we ended the day with Emma saying to me during dinner, “Go outside with just Mommy?”

“Yeah okay, Em.  We can go outside together as soon as everyone’s finished eating their dinner,” I told her.

Once outside, Nic was already there throwing the frisbee for the dogs.  Emma said, “Hold hands with Nicky?”

“Sure Em,” Nic said.

“Run through the sprinklers with Nicky?”  Emma said, jumping up and down.

“I’ll run through the sprinklers with you, Em.  Here,” he said, holding out his hand.

And then they began to run together.

Through the sprinklers…

And then Emma changed into her bathing suit and they ran again, this time through a rainbow…

And out the other side.

Laughing and together, just the way any brother and sister might.

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

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Work and Family

Posted on August 9, 2011 by | Leave a comment

Things have been horrific at work.  Tremendous stress and upheaval, but despite it all, my children and family keep things in perspective.  I remember when I first heard the word “autism” and later read how those with this diagnosis tended toward anti-social behavior  I felt terribly sad.  Sad because I thought at the time it meant that Emma would miss out on the things that have made my life most meaningful.  My happiest moments have all been with my family, my favorite memories are all involving family and friends.  But so are Emma’s.  She still asks to go back to California to – “Uncle Andy’s wedding.”  When we’ve told her he won’t be getting married again or at least everyone hopes this to be the case, she says -“Go to California.  Andy’s wedding again?”

We’ve tried to explain that weddings are unusual celebrations, not the sort of thing one does every few years, at least for most of us.  But nothing we say fazes her.  She had such a wonderful time in Napa Valley at my brother Andy’s wedding, she wants to go back, be among my extended family.

My fondest childhood memories are of coming out to Aspen to visit my grandmother.  Her house was brimming with relatives, her brother, my Great Uncle Paul, a number of his children would come for tea every afternoon after skiing.  She had dinner parties, more relatives would descend and close friends were called, “Aunt” and “Uncle” even if they weren’t technically speaking.  The smells of cooking, burst forth from the kitchen, the upstairs always had the distinct smell of moth balls.  I loved going up to her attic and rummaging about through enormous steamer trunks filled with clothing and photographs from another time.

Emma is like me in this way.  She has a phenomenal memory and it is always about people and family that she refers to when she is recalling something she wants to do again from the past.  “Go back to Cape Cod” is one of her more recent requests.  Every summer Richard and I used to go to North Trurro.  We always had friends come and join us, a kind of revolving door of people – there was Kat and Randy, Christian and his girlfriend at the time, Anna.  Emma asks for these people by name, she hasn’t forgotten any of them.

So when things become difficult with work, problems arise, no matter how dire things can seem, it is my family who always bring things back into perspective.

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

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Sunday in Aspen with Emma

Posted on August 8, 2011 by | Leave a comment

Yesterday I spent the entire day with my family.  This was a first since they arrived a week ago.  In the morning I took Emma on the 4-wheeler.  I couldn’t remember how to put the thing in reverse so I made sure we went places which only required forward movement.  The whole shifting gears thing was a bit tricky, so Emma learned quickly that she needed to hold on to me as we galumphed along – something she doesn’t usually do when riding with Richard.

After our ride we took the dogs for a walk.

And on the way we saw this…

Upon further investigation, it turns out it was the desiccated pelt of a coyote or perhaps a deer, hard to tell at this late stage.  My mother evidently found it lying on the path several months ago and hung it on this shrub so the dogs wouldn’t drag it around.  Emma was utterly uninterested and walked right by.

After our walk, we went up on the gondola to the top of Aspen Mountain where a blue grass band played.

On the ride up the mountain, Emma played a game where she went through a list of all our various relatives and added, “cousin” or “uncle” or some other title before their name.  Then she got a little creative and said, “Jungle Andy!”

“No Em!  Not jungle Andy, Uncle Andy,” we said, laughing.

“Uncle Andy,” she responded, then very quickly added, “Jungle Andy!” as we screamed “No!  Not jungle Andy!”  Emma thought this so hilarious that she kept it up for the entire 20 minute ride.  And in truth, it was pretty funny.

After our lunch on the top of the mountain, Emma stood in line to bungie jump.  The weekends are particularly crowded and so we ended up waiting…  and waiting…  and waiting.  For 45 minutes or more, I lost track of how long we waited.  But finally it was Emma’s turn.

After Emma finished bungie jumping we drove out to the Snowmass Recreation Center and swam in their outdoor saline water pool.  Finally we drove home, changed and went to Takah Sushi for dinner.

Emma was terrific.  Not a single meltdown.  She waited the interminably long wait to bungie jump, she went along with all the plans, even when they changed at the last minute due to things beyond our control.  And at the pool, she showered, washed her hair and then for the first time ever, brushed her own hair, completely, without any help from me.  When we went out for dinner that evening, we brought along her food, she ate with us, then played, making faces and being silly.  When it was time to leave, she ran ahead toward the car, never a protest.

Now that’s a great day!

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

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Emma’s Party

Posted on August 5, 2011 by | Leave a comment

Last night we had some guests over for dinner.  Emma, upon hearing guests were arriving, announced, “It’s a party!” before dashing off to her bedroom to don the appropriate attire.  When she returned, wearing a dress my mother wore to dancing school in the ’30’s, we all oohed and aahed.

“Emma!  What a pretty dress you picked out.”

“Look!  It’s so beautiful!” She said bouncing up and down and twirling around.

My mother told us it was a Hungarian dress that had a velvet vest and a faux fur hat, which evidently Emma had chosen to forego.

Emma seated at the dinner table wearing her party dress

Emma loves a party.  She always has.  She has no inhibitions, loves nothing more than to sing and dance in front of a crowd – the more the merrier.   Her love of parties is something I am always surprised by, as both Richard and I were so very shy at her age.  It’s one of those things, like her talent for holding a tune that we joke about.  “She must get that from you,” I tell my husband.

“Not me.  Don’t know where that came from,” Richard will respond.

And if my mother’s in the room, she’ll usually get the credit.  “Must be Mom,” I’ll say, looking over at her as Nic rolls his eyes.

So after dessert (Nic and his Granma made a fabulous cheesecake, which Nic decorated) and the plates had been cleared, Emma ran downstairs in her pajamas and said, “Ready for performance!”  She gestured with her hands for us to gather in the living room and take a seat.  She waited until everyone had sat down before launching into a song, neither Richard nor I had ever heard.  The song whose lyrics at one point are – “I am the thunder, you are the lightening” was sung in a loud voice while she did a little dance.

Emma singing and dancing

When she’d finished she said, “Sing it again?”

“A different song, Em.  You can sing one more song, but it has to be different.”

So she chose an old stand-by, Gwen Stefani’s “It’s my life”.

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

Nic’s cheesecake

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Emma’s Struggle with Pronouns

Posted on August 4, 2011 by | 3 comments

I have written about this before – Emma’s continuing struggle with using the correct pronouns.  It is something one sees in children on the spectrum.  Pronoun confusion, lack of pointing at an early age, a lack of engagement or initiating play, these are all warning signs in small children and almost all children diagnosed with autism share at least a couple of these.

Emma uses the word “you” when speaking about herself, but also when speaking about someone else.  It’s a word she uses for anyone, herself included.  As in “You want to go on the 4-wheeler?”  Someone who doesn’t know Emma would assume she’s inviting them to go with her and the response is often an enthusiastic, “Yes, I do want to go on the 4-wheeler!”

Emma, then happily runs outside, turns the engine on and waits for the unsuspecting person to join her.  This scenario actually happened with our cousin Max, whom neither of the kids had ever met until last summer.  But when Emma says things like, “Bye Emma!” to the person she has just been introduced to, things get a bit more confusing.

So last night when Richard and Emma picked me up from my store in town, she said, “No not going to see July fireworks.  They’re too scary.  Mommy has to pick you up.”  Then she paused and said, “No, Mommy has to pick me up!”  We were surprised and pleased.

“That’s right Em!”  And then as an aside to Richard, “Wow!  That was pretty great.  She corrected herself!”

Emma then repeated herself several times, “Fireworks too scary.  Mommy will pick me up.”  She looked from Richard to me proudly.  “Good talking!” she said, before leaping into the car.

During the ride back to the ranch she tried various variations on this theme.  Each time using “me” correctly.

It was a proud moment for all of us.

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

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Em & The 4-Wheeler

Posted on August 2, 2011 by | Leave a comment

Emma on the 4-wheeler

Perhaps more exciting than even the ARC (Aspen Recreational Center) is the 4-wheeler kept up on the ranch.  For those who are not familiar with this piece of machinery, it is a cross between a kind of Hummer version of a motorcycle and an open air golf cart.  My two nephews, Colter and Bridger, are cringing at this crude and citified description of mine, because it is actually an essential piece of powerful ranch equipment used to change sprinkler heads, and to haul a variety of other things.  Things I do not pretend to know about.  To me, it is the vehicle we use to go looking for coyote, fox and other wild life up on the ranch.  Last summer we found a den of coyote pups, so cute(!) whose mom lay basking on a nearby rock, unruffled by our intrusion, she didn’t move a muscle as we rode by within ten feet of her pups.  (I know Colter and Bridger – you guys might want to just shut your computer down at this point – it’s got to be painful to read this description.)

Now that I have thoroughly humiliated my fabulous nephews with my utter ignorance in all things to do with ranching, I will attempt to move on.  When Emma arrived in Aspen the night before last, one of the first things out of her mouth was – “Go on the 4-wheeler?”  Followed by, “Go to DuBrul’s (my cousins’s) house?”

When we told her she couldn’t do either of those things, she then went for her back up list.  “Go see motorcycle bubbles?”  (This requires interpretation as this is what Emma calls the 4th of July fireworks, which we missed this year as we were in New York.

“No not going to see motorcycle bubbles.  Go swimming in indoor pool.  Yeah, go to the ARC.”

When we informed her that as it was almost 9:00PM, this wouldn’t be possible, but promised to take her the following day, she said, “Go to outdoor pool?”  (Meaning the Snowmass rec center’s outdoor saline water pool)

Finally tired of our feeble excuses about the late hour and how everything was closed, she conceded sadly, “Time for bed.”

But the following morning the list was proffered up and there wasn’t much we could say as our excuses of it’s too late, no longer held any weight and she knew it.  So off to the ARC Emma went and then a trip to the grocery store where she was able to procure her favorite chocolate milk from Horizon, before getting the 4-wheeler from the barn.  We were also able to load a bale of hay into the front to carry back to the house to set up with a bull’s eye so that Nic can practice his archery skills.

Bringing hay back to the house for Nic

It’s good to be home with the family!

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

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Bliss

Posted on August 1, 2011 by | 5 comments

I am sitting here writing this, with Emma to my left singing “Three Little Elephants” in Spanish.  Okay, so you might not know that was what she was singing even if you were a native spanish speaking person, but I know the song, because the tune is exact even if her pronunciation is not.  Richard and the children arrived in Aspen last night.  To say that I was pleased to see them, really doesn’t sum up my excitement and happiness.  I am blissfully happy!

Last night Emma was so excited to be here that she didn’t want to go to bed.  As my husband, now to be referred to as the man-of-the-decade (MOD – I tried “century” whose acronym then became MOC and have opted for “decade” simply because of the acronym and not because there’s a time limit on my admiration for him and all he does) was unpacking, I got Em into her nightie and brushed her teeth.  When she finally felt it was time for bed, at around 10:00PM (that’s midnight by New York time) she said, “Time for reading and bed!”

“Are you ready for bed, Em?” I asked.

“Yes.  Mommy come,” she replied.

I am reading a book written by a wonderfully talented friend of ours – Dan Elish – whose book is entitled “The School for the Insanely Gifted” and Emma is enjoying it immensely, as am I.  As I read to her, Emma snuggled up against me, putting her head on my shoulder as I read.  I use to do the exact same thing when my mother used to read to me and it filled me with joy.  When her little body succumbed to sleep I lay with her, not wanting to move, just relishing her head on my shoulder, her body pressed up next to mine.

This morning Nic and Emma woke at the rousing hour of 5:30AM – in part because the dogs began barking at a particularly tenacious coyote who has a habit of coming right up to the house and yelping.  The dogs, in a spectacular display of frenzied aggression twirl around barking and ramming their bodies against the door in an effort to get outside.  My mother’s voice shouting from her bedroom, “be quiet!” does nothing to calm them.  And in fact, may just rile them up further, though I’d never say this to her directly.  The whole thing has a comedic aspect to it – dogs making more noise than one would think possible, coyote howling, children bolt upright in bed, Mom shouting for quiet in a kind of exaggerated stage whisper and Richard covering his ears with a pillow.

Once downstairs Emma and I made chocolate pudding, while Nic proceeded to play his newest composition on the piano.  By the way – Piglet – if you’re reading this – any tips on how to keep the instant pudding from turning into soup after an hour or so in the frig?  I think it has something to do with the altitude, as this doesn’t happen to us in New York.  But I digress…  After making pudding, Nic proceeded to demonstrate his newly acquired skill of blowing bubbles and Emma went upstairs only to return wearing her bathing suit.  “Time to go to the indoor pool!” she cheerfully announced.

Nic proudly blowing a bubble

The aftermath of another bubble

“But Em, it’s not open yet.”

“We have to wait.  Then going to go to the indoor pool, jump off the diving board, go down the slide, go in the carousel.  Go with Mommy?”

“I can go later today or tomorrow Emmy,” I told her.

“Okay,” she said.  “Mommy has to work,” she added in a serious tone.

“How about getting dressed so you’re all ready to go?”

Emma returns wearing her swimsuit and clothing over her suit.


“Playing bells,” Emma explained as she pounded on the keys of the piano.

Everyone is together and I am in bliss.

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

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These Last Few Days

Posted on July 29, 2011 by | 2 comments

Every day for the past month, Emma has gone on the bus to summer camp with her brother, Nic and her therapist Joe, shadowing her.  Joe tells me this year has been terrific.  Emma has tried new things, been engaged and interacted with the other children more than the year before.  Today is their last day before coming out to join me in Aspen.  Because it’s their last day, Nic told me, they can do whatever they like.  Nic said he was probably going to play soccer, practice his archery, swim “a bunch of times” in the the lake and do gymnastics.

I am interested to hear what Emma will do.  When I called last night, she was with Joe in her “study room” so I couldn’t speak to her to ask.  Not that I would have gotten a clear answer.  The future and past are difficult concepts for Emma to express.  I never know when I speak with her if she’s referring to something she wants to do, did do, will do in the future or wished she could have done in the past. Despite my confusion in regards to what time frame is being referenced, Emma is usually without complaint.

Emma at camp – 2011

Every afternoon upon returning from camp, Joe and Emma go into her “study room” where she works on her literacy program.  I haven’t worked with her for the last ten days, so I am eager to see how she is coming along.  Emma’s literacy program, perhaps more than anything else, has caused a significant shift, in Emma, but also in me.  The progress she’s made since this January when she was just learning to form her letters, to now, where she is writing one and two sentences, is tremendous to see.  But I also feel she is gaining a certain degree of self confidence.  Working with her has been incredible as I know how hard it is for her, but she continues to do the work anyway.

Sleep, wake up, sleep, wake up, go on the airplane and see Mommy!

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

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Labels – Autism

Posted on July 27, 2011 by | 2 comments

Labels are easy, they’re shorthand for what we want to communicate and yet they often obscure what is really being said.  (These are the things I think about when I’m away from my family for an extended period of time, as I have been, since coming out to Aspen because of work. All of this reflection will end in another four days, because the children and Richard will be joining me out here this Sunday – Hurray!)

We say things like – “oh he’s schizophrenic,” “she’s bi-polar,” “she’s anorexic,” “he’s an alcoholic” and the meaning gets conveyed and yet, is it?  After all that’s not ALL the person is.  It’s something they have been diagnosed with, perhaps are struggling with,  it’s a medical term, but it does not encompass who and what that person is in their entirety.  When I hear someone describe another person as “autistic” I understand that person has been given a diagnosis of autism, but I don’t presume to know much more about that person.  For example, I won’t know if this particular person diagnosed with autism can speak, read or write, they may have other issues, physical issues, other diagnoses added on to further illuminate, but the labels begin to overwhelm the actual person.  I can’t know from the various labels whether the person has a sense of humor, if they have terrific eye contact or no eye contact, whether they cringe at physical contact or whether they seek it.  The word “autistic” does not give me any clues as to whether the person is gregarious or shy, enjoys reading about painting or knows everything there is to know about quantum physics.  The label does not tell me about the person’s passions, dreams, desires or talents.  If I knew nothing about autism, having someone described to me as such might cause me to presume a great many things.  Things I would be completely wrong in assuming.

In my daughter, Emma’s case, the labels are almost always unhelpful.  I use them, it is shorthand after all, but they reduce her to something that doesn’t help people know her or understand her.  For example, Emma has a terrific sense of humor, she loves playing jokes, being silly, making faces, repeating things in a way that will guarantee a laugh.  When I use the word autism, or say to someone – she has autism – it’s the best I can do in a short period of time.  It’s a little like when we say to one another – “How are you today?”  The answer we all know to give is:  “I’m fine, how are you.”  Even if we aren’t fine.  Can you imagine if you asked that seemingly innocuous question and the response was:  “You better take a seat, this may take some time.”

I avoid using the word “autistic” because it implies more to me, than saying “she has autism.”   It’s a subtle distinction, but to me, anyway, it’s there.  Emma is so much more than a diagnosis.  She is pure Emma. And Emma is complex, just like the rest of us.  She is funny, a talented singer with a beautiful voice, she has a personality and temperament that are unique to her.  She loves to run and swim and swing her arms and zip around on her scooter.  She enjoys being read to, sung to, and any game that involves running.  I dislike that her diagnosis takes up so much room in people’s minds.  I do not like that when people hear she’s “autistic” they make assumptions about her, almost always incorrect.

Can you imagine what the world would be like, if all of us took all these labels, our shorthand for communicating and tossed them out the window?  We would live in a world, which would make prejudice and judgements much more difficult to come by.  We would have to live in the discomfort of not knowing.  But what a great way to live!

Emma – 13 months – eating a brownie.

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

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What is Normal?

Posted on July 25, 2011 by | 1 comment

Having a child diagnosed with autism, one inevitably comes up against this question – What exactly is normal?

According to Dictionary.com – “Normal:  1. conforming to the standard or the common type; usual; not abnormal; regular; natural.  2. serving to establish a standard.  Psychology – a. approximately average in any psychological trait, as intelligence, personality, or emotional adjustment.  b. free from any mental disorder; sane.”

Autism is a neurological disorder, yet interestingly, if one goes to dictionary.com and looks up autism, the word “neurological” never shows up in it’s definition.  In fact, it is defined as:  1. Psychiatry – a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment.  2.  a tendency to view life in terms of one’s own needs and desires.”

Okay  – so the definition certainly suggests something outside of “normal”, though “a tendency to view life in terms of one’s own needs and desires” certainly describes a great many people I’ve come in contact with over the course of my life.  In fact, couldn’t one even say that this is one of the great flaws of being human?  We all tend to view our lives as our own private universe, and though we have grown to understand we are not the center of it, a great many still wish we were.

Have you ever engaged in a conversation with another person only to begin lamenting the problems of the world, our government, other governments only to conclude that if everyone just listened to us, the world would be a better place?  How many times in a relationship have you thought, if only the other person would listen to me, do as I wish, everything between us would be so much easier?

It all comes down to the degree.  I didn’t bother to look up narcissism, but I’m pretty sure people who have that tendency would fall under the second definition of autism – though the resemblance stops there.

When I think about my daughter, Emma, she is the antithesis of narcissism.  Emma is without ego.  She is also without malice.  It would never occur to Emma to tease or set out to hurt another person’s feelings.  These are not things she is cognitively capable of.  I remember the first time she told a lie, I was ecstatic.

“Did you hear her?” I asked my husband, Richard.  ”I asked her if she’d brushed her teeth and she told me she had, but when I went into the bathroom, her toothbrush hadn’t been used!”

“Things are all falling into place,” Richard said with a grin.

The idea that Emma understood that if she told me what she knew I wanted to hear, even though it wasn’t true, it might allow her to get away with not doing something she didn’t want to do, was a huge step toward “normalcy”.

I have grown to dislike these definitions and labels.  I find them utterly unhelpful.  Perhaps in the beginning when I knew nothing about PDD-NOS – the diagnosis first given to Emma when she was two – I had no idea what people in the field were talking about, and so it was imperative that I learn what these labels meant.  But now, some seven years later, those same labels do little to help us help our daughter.

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

Emma in Central Park carrying her dad’s “man bag.”

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Explaining Travel to Emma

Posted on July 20, 2011 by | Leave a comment

I flew back to Aspen, Colorado yesterday, alone.  Explaining to Emma why I had to return so quickly was difficult.  First of all I don’t know how much she understands and since she cannot ask me questions the way her older, neuro-typical, brother, Nic does, I cannot know what goes through her mind.  So when I told both children ten days ago that I was going to have to go back to Aspen because of my store, Nic said, “NOOOOOO!  You only just came home!  That’s so unfair, Mom.  Why do you have to go back?”

Emma remained silent.  I explained that there were things I needed to take care of at the store, that it was part of the deal with owning one’s own business, it’s just what one has to do.  After awhile, Emma wandered away muttering, “Sleep, wake up, camp on the lake, sleep, wake up, get on airplane.”

Nic meanwhile was angry, then teary, then resigned.  “I know, honey.  It’s a drag.  But you, Daddy and Em will come out in August so it won’t be so long this time that we’re all apart.”

“No Mom.  It’s not a drag.  This sucks,” he said, before turning away from me, his arms crossed, to stare out the window.

“I’m so sorry, Nicky.”

And as sorry as I was that Nic was upset, I wondered what was going on through Emma’s mind.  Was she just accepting that this was how things were, did she have questions?  What was she feeling?

Impossible for me to know.

This past weekend I pulled out a calendar and went over it with Nic and Emma.  Pointing to various dates, I said, “Okay so this is when I have to leave.”

“Get on airplane, fly back to Aspen,” Emma said, looking at the box with the number 19 on it where my finger was positioned.

“Yeah.  That’s right Em.  That’s the day I have to go back.”

“Sleep, wake up, get on airplane,” she said.

“Just me, Em.  You guys are going to go to camp and stay in New York with Daddy,” I explained.  “Then look, on this day you, Daddy, Nic and Jackie are going to fly out to Aspen.  That’s in twelve days.  And here, this is when Joe comes out and Jackie has to go back, then here is when we all fly back to New York together.”  I looked at both of them.  “Okay?”

“I don’t want you to go again.  We’ve only had you for like three days,” Nic said.

“Two weeks.”  I put my arm around him.  “I know.  I know.”

“It’s not fair,” Nic said.

“Sleep, wake up, sleep wake up…”  Emma began, counting on her fingers how many sleep, wake ups it would be before they flew out to Aspen to meet me.  “Go to YMCA with just Mommy?”  Emma said after she had finished counting out 12 “sleep, wake ups”.

“No, Em.  But Daddy will take you.”

“Go to YMCA with just Daddy,” she repeated and then scooted away on her scooter.

Yesterday morning as I was gathering my things to go downstairs, Emma ran over to me and threw her arms around me.  “Bye Mommy!” She said, burying her face into me.

“I’m going to miss you so much, Em.”

“Miss you,” she said, before pulling away.

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

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