Tag Archives: kids with autism

Autism and Traveling

Yesterday we flew back to New York city.  Emma is a terrific traveler, content to stare out the window, look at her books and sing songs.  As long as she is able to sit in a window seat, she is happy.

On the flight from Denver to New York, which was already delayed by about a half an hour, we noticed a man speaking in a loud voice to one of the flight personnel.  He was a large man, well over six feet tall, with close cropped greying hair.  I couldn’t hear what he was saying, but it was clear he was unhappy about something, not unusual given the rigors of traveling nowadays.  But as he went on, I noticed a cadence to his speech that was familiar to me.

“Mom, what’s wrong with that guy?” Nic asked me as I watched the scene unfold.

“Don’t know, Nic.”

“Is he autistic?”  Nic asked.

“Maybe.  I’m not sure.”

It was at this moment that we were called to board.  The man, visibly upset and walking with a cane, boarded first.  When we finally settled into our seats, I noticed that same man was seated directly in front of me – in an aisle seat.   The usual parade of harried travelers filed along, as exhausted flight attendants urged everyone into their seats so that we could take off without further delays.  By the time the plane was airborne, we all began to relax.  At a certain point the man in front of me yelled out, “I can’t see out the window!  I can’t see out the window!   Excuse me miss, I can’t see out the window!”

It wasn’t clear who he was speaking to, but it seemed that the woman seated near the window in the row in front of him had pulled the shade down.  Someone then said, “It’s her seat, she can do what she wants.”

To which the man shouted, “I can’t see out the window.  I hate these aisle seats.”

For another hour or so all seemed to calm down until about an hour from our landing when the pilot announced we were in a holding pattern over Pennsylvania and would be for an indefinite period of time.  The pilot then went on to assure us that we had enough fuel for several hours so everyone should relax and he would keep us updated.  But the gentleman in front of me began to get agitated, asking the flight attendant what was happening, what time would we actually land etc.  She explained that we were in a holding pattern and couldn’t predict what time we would actually land.

After she left the man began to shout, “I can’t see out the window.”  People were muttering and saying things under their breath, while the poor man became increasingly upset.  At this point I leaned forward to the woman in his row seated next to the window and asked her if she would mind changing her window seat for his aisle seat.  I explained to her that I thought he probably had autism and was becoming increasingly upset by all the delays and needed to be by the window.  I told her my daughter (happily gazing out the window directly behind her, also had autism and needed to sit in the window seat too.)  The young woman complied and I asked her if she minded if I intervened by telling the flight attendant.  She said that would be fine.  I went to find the flight attendant who was discussing the situation with another flight attendant in first class.  I explained that I thought the man had autism and that my guess was he would feel much calmer if he could sit in a window seat and that the woman to his right had agreed to change her seat with him.

The flight attendant then returned saying to the man, “This nice woman has agreed to change seats with you.”

“I hate these aisle seats.  I told them at the gate I hate these aisle seats.  I was suppose to have a window seat.  I told them I was suppose to have a window seat,” the man said, now standing in the aisle of the plane.

Once he had reseated himself by the window, all was quiet with no further mishaps despite our over an hour delay in landing.

What I find most upsetting about this, is how it all could have been avoided.  The airlines, like so many, do not have any understanding of autism.  How hard would it have been to give this man a window seat as he requested at the gate?  When I went to the flight attendant and suggested he might have autism, she said, “Oh, yes.  He does.”  So it’s clear the airline had been made aware of this and yet, chose to do nothing to help this man.

Sometimes I feel as though I am yelling from the top of a very large building.  WHAT IS IT GOING TO TAKE ?   The lack of understanding around a condition that affects hundreds of thousands of people is mind boggling.   The scene we witnessed could have been avoided had the airlines and it’s personnel had even a vague understanding of autism.

For more on autism and traveling with Emma, go to:  www.EmmasHopeBook.com

One Last Night

Sunrise

It’s hard not to feel the overwhelming beauty of life when seeing a sunrise over the mountains, like this one, as we did yesterday.

Emma has asked to go back to our little rustic one room cabin almost every night since we last spent the night there about a week ago.  Since we are leaving tomorrow, returning to New York, we decided last night was our final chance to spend in it.

“Hey Em, do you want to spend the night in the cabin?”

“YES!!!!” she shouted, jumping up and down.  Then she dashed upstairs, returning a little while later carrying her backpack.

Nic opted to stay with his Granma, so the three of us set out, Emma racing ahead of us up the little trail.  When we arrived and had settled in, Emma threw on her nightgown, despite the fact it was only 7:30PM and still light outside.

“Don’t y0u want to sit with us and watch the stars come up?”

“No, not going to sit outside.  Time for bed!”  Emma said snuggling under her sleeping bag.

Richard and I watched as the sun set, whereupon the bats came out.  Just as a bat whipped past us, less than two feet from where we were sitting, Emma appeared.

“Em, did you see the bat?”

“Bats come out.  Bats going to bite you!”  Emma exclaimed, looking up anxiously.

“No.  They eat bugs, Em.  They’re not going to bite you.”

“Okay, okay, sit with Mommy!”  Emma jumped onto my lap, pulling a blanket up around her shoulders.

When we got up this morning and began packing up to return to civilization, Emma said, “Spend tonight again in the cabin?”

“No Em.  We have to fly back to New York on Thursday.”

“Get on the airplane,” Emma said nodding her head up and down.

“Yes, we get on an airplane.”

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

What Matters

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

Deficits and Assets – Autism

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

Skateboarding – Autism

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

Bumps In The Road

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

Emma’s Rainbow

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

Work and Family

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

Sunday in Aspen with Emma

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

Emma’s Struggle with Pronouns

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

Em & The 4-Wheeler

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

Bliss

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

Labels – Autism

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

What is Normal – Continued

A few weeks ago while at the swimming pool with Emma, a woman asked me where she should take her two grandchildren, who were going to be staying with her.  After inquiring what the age of her grandchildren were – just a bit younger than Nic and Emma –  I began with a list of parks, (all with water features) moved on to museums, then zoos, botanical gardens etc.

At one point she pointed to Emma, who was standing near me twirling her hair around her index finger, and said, “What are her favorite things to do?”

I waited to see if Emma would respond, when she did not, I said, “Emma likes any park with water and the Central Park carousel,” I said.  As I was speaking Emma was twirling her hair and opening all the lockers in the dressing room.  Trying to engage her I said, “Hey Em.  What do you like to do on the weekends?”

Emma turned to me and said, “You have to ask Mommy.  Mommy can I go home now?”

The woman looked kindly at Emma, then with a certain amount of confusion said, “Oh!”

“Emma has autism,” I said.  “Pronouns have always been tough.”

“I would never have guessed that looking at her,” the woman said.

I put my arm around Emma and said, “It was nice speaking with you, have a lovely time with your grandchildren.”

As we left I thought about what the woman said.

Autism is often invisible.  With many children they have no discernible signs of physical issues, they look healthy, they seem “normal”.  Unless one tried to engage Emma in conversation, one would never know there was anything amiss.  Even then, I’m surprised by how often people still don’t know.  We have such a wide range of what we deem “normal” in human behavior.  I think people assume they are speaking to a neuro-typical child and so it can take awhile before they discern that they are not.  In Emma’s case she also can appear shy or perhaps people assume she’s one of those children who hasn’t been taught to be “polite” and answer when spoken to.   Many of us find it confusing to see someone who “looks normal”, only to find there are deeper neurological issues lurking.  Most people think, when first meeting Emma that she’s aloof or bored.  Sadly, many people assume she hasn’t been brought up properly and so they become rude or scolding, speak to her harshly, before I can intervene.

So what exactly is normal?

I don’t know.   But I’m not convinced it’s anything I aspire to.

Emma eating lunch at camp

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

What is Normal?

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.”