Tag Archives: Autism

Laughter

Posted on March 1, 2012 by | 4 comments

I used to believe I could cure Emma.  I used to believe if I just looked hard enough I would find the thing that would take her autism away.  I read the memoirs by parents who, through various bio-medical or behavioral interventions had “recovered” kids, I avoided reading the memoirs by parents who did not.  I used to believe that by force of will, hard work, focus, dedication and diligence I too would one day have a daughter who had gained membership to that exclusive club of “recovered children.”

I no longer believe that.  However that does not mean she cannot be helped.  Emma can grow, learn and progress as we all can.  It just takes her much, much longer and requires a great deal more support.

Emma has a stomach bug in addition to her other ailments.  She was up on and off all night.  Her ears are bothering her, her stomach hurts, her bowels are sluggish and blocked and despite all of this, despite having just thrown up what little food she ate for breakfast, she is cheerful.  “Belly go bang bang,” she said, before turning on Michael Jackson’s Beat It.

Belly go bang-bang is what Emma calls the sensation she feels before she throws up.  It’s an apt description.  Right now she is singing to MJ’s incomprehensible lyrics and dancing.  It’s a muted version of her usual singing and dancing, but given how uncomfortable she must feel, it’s admirable.

As we lurched through traffic yesterday morning, headed for the emergency room with Emma, Richard said, “Well, you couldn’t accuse us of having boring lives.”

No, you really couldn’t.  And then for some reason I thought of Donald Trump’s hair.  Why this arbitrary and completely ridiculous image came to mind, I have no idea.  But it made me smile.  His wacky, and timeless, I might add, hairstyle is one of a number of constants in life that make me laugh.  I’m grateful for that.

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

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Posted in Autism, Constipation, Parenting

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The Hospital

Posted on February 29, 2012 by | 6 comments

This was not the post I had intended to write.  This morning at around 2:00AM Emma came into our room, her little body burning up.  She nestled in between Richard and me.  Merlin had curled himself into a tight ball near my head; it is not an exaggeration to say it was a crowded bed.  This is the second time since my surgery that Emma’s been up in the middle of the night.  What was once a nightly occurrence has, thankfully, become a rarity.  By 6:30AM Emma was complaining about the right side of her abdomen hurting.  She became more agitated and upset as the minutes ticked by.  Richard and I realized we had no choice but to take her to the emergency room.

Once there, Emma seemed less upset and after we answered the thirtieth question about her medical history (for a ten year old, it is lengthy and extensive) went over all her various hospitalizations and the doctors we’ve seen, they decided to take an x-ray to determine if constipation was the cause of her pain.  As I stood in the booth with the technician, whose nephew has severe autism and is non-verbal, I could see that constipation was indeed the problem.  Not only was there a single enormous blockage, but her intestines were filled with stool.

Once again we were confronted with the question that has plagued us off and on for the last seven plus years.  How do you help a constipated child, who refuses to eat little if any of the foods that will help her, see the connection?  Or is that not the right question?  When the supervising pediatrician came in to speak with us she gave us the same remedies I have been given by countless other doctors and specialists.  This isn’t rocket science.  It’s pretty basic stuff.  But when you’re dealing with a child who has sensory issues, making it difficult for her to know when she feels the need to go to the toilet, along with fear from past painful experiences, add to that dietary limitations and an insistence on eating a dairy heavy diet, even though it’s gotten much, much better, you have a never-ending cycle that is very, very difficult to break.

“Let us be the bad guys.  We’ll give her an enema, maybe you or her dad could help hold her down,” the supervisor told us.  And as well meaning as she was, as obvious as her suggestion may be, I couldn’t agree to it.  Having Emma held down by three or even four strangers while a bottle of saline solution is pumped into her, while she screams and fights is not going to solve the bigger issue, the issue that we have been dealing with for the last seven years with varying degrees of success – constipation.

“I know,” the doctor said, in response to my despair that we were once again being told the same thing we’ve been told by literally DOZENS of doctors.   “I’m sure it’s very frustrating.”

“Actually frustrating doesn’t begin to cover it,” I said.

And it doesn’t.  Frustration is the beginning of a great many feelings when you are forced to watch your child writhe in pain from something that is so heinous and frightening.  Having just had surgery, having, for the first time had to personally experience the hell that sums up constipation, the pain, the fear, reminding myself to breathe into the pain and relax, I can relate to what Emma is going through in a way I never could have before.  So I did the only thing I know to do.  “Come on Em.  Let’s go to the bathroom, I’ll stay with you, and then afterward we can go home.”

Emma took my hand and together we went into the bathroom where she sat with me crouched in front of her, just as I used to do every single day for so many years.  This time I looked into her eyes and said in a calm, gentle voice, “I’m here with you Emma.  I’m going to stay here with you.  You can do this.”

“I know, it hurts to poop,” Emma cried.

“Yes.  It does.  I know.”

Finally she was able to let go of at least some of the stool inside her and after another 30 minutes, we left and came home.  It’s not over, she’s still massively constipated, shes’ still uncomfortable.  We will have to insist she not eat as much dairy.  We will have to be more diligent about monitoring her.  We have no easy answers.  We have no quick fixes.  But we will get through the rest of the day, just this one day, one day, one step at a time.

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

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Impatience

Posted on February 28, 2012 by | 10 comments

How you do anything, is how you do everything.  I don’t know if that’s a direct quote, but the idea is from a Buddhist teacher who wrote a book with a similar title, which I also cannot remember exactly.  What I do remember is reading that idea and how it resonated.

So I had surgery on Wednesday, was home that night, was in a lot of pain Thursday, barely remember Friday, but know I felt much, much better and by Saturday was over it.  I don’t mean physically, I mean I was over it, as in – we did the whole surgery thing, now let’s get on with life, this has becoming tiresome.  When I woke up on Saturday and still felt like I’d been hit broadside by a semi, I thought –  I should feel well enough to get up and do things.  Then I had to remind myself, it had only been two full days since I woke from the anesthesia and that this was the third day and I would feel better, eventually.  With that thought in mind I wandered around and went back to bed.  Sunday I was more active and yesterday I was a whirlwind of activity, comparatively speaking.  But I did have to take a nap at one point and had a brutal headache.  Today, determined to just “act as if” all was well, I woke with everyone else, tried to do my part in getting the children ready for school, did a load of laundry, and now, sitting here, feel exhausted again, and, it must be said, tired of feeling tired.

How you do anything is how you do everything.

So the bad news is I’m impatient, but that’s also the good news because my impatience pushes me to be active, which is a good thing after surgery as the worst thing one can do is give in to the feeling of just wanting to stay in bed… forever.

Like so many things, emotions tend to seep into everything.  When I feel upbeat and full of energy everything takes on a brighter hue, people seem friendlier, minor delays and the vicissitudes of  life don’t have a lasting impact.  But the opposite is also true.  So this morning while getting Emma ready for her school bus she said she wanted to play a game.

“Okay.  What game do you want to play?” I asked.

“Imagine that game,” she answered.

“How do you play it?”  I asked.

She then began to sing an Elmo song entitled – “Imagine That” and began to script the dialogue between Zooey and another Sesame Street character.

“Now we know what the – imagine that – game is,” Richard remarked.

Yep.  And here’s the thing, this isn’t terrible.  There’s nothing inherently wrong with her choosing to do this during the ten minutes she had left before her school bus arrived.  But I felt disappointed.  I had hoped she wanted to play a game.  You know, a game where we actually interacted.  But that’s not what Emma had in mind.  And it’s okay.  She wanted to sing her song and so she did.

Impatience.  Acceptance.   Impatience.  Acceptance.

How you do anything is how you do everything.

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

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Surgery & Emma

Posted on February 27, 2012 by | 4 comments

I’m back!   Most of me, except for the part that was left behind in the hospital.  When I came to, my husband was holding my hand.  “You look like you’re twenty years old,” he said, stroking my arm.  I was pretty sure that wasn’t possible as I had been hung upside down for the past four and a half hours and so my upper body and face were so swollen I could barely open my bloated eyes enough to see.  I had a moment of wondering whether we’d worked out some sort of agreement that he would say something ridiculous to make me laugh before I went under, but I don’t think so.  That’s just the way Richard is.  He came up with it all on his own.    And it worked.  I laughed.  But then it hurt to laugh, so I told him he had to stop saying things like that.

Along with my paranoia of hospitals stemming from childhood, I was focused on getting home.  Immediately.  While it wasn’t immediate, Richard did manage to get me into our own bed by 9:00PM that night.  When Emma bounced into our bedroom at 6:00AM the following morning she stopped, mid bounce and looked at me quizzically.  “It’s Mommy!”  she said, pointing at me and grinning.  “Mommy’s back!”  When she saw the four incisions in my abdomen, she said, “Mommy has boo-boos.  Mommy had to go to the hospital.   Mommy had to go to the hospital with Emma.  We have to go together.”

“No, Em.  You don’t have to go to the hospital.  I already went.  Just me.  Now I’m home and I’m going to be fine.”

“Just you and me go to the hospital,” Emma said, sitting carefully on the edge of the bed near me.  Then she began to cry.  I wasn’t sure exactly why she was crying, but I did my best to reassure her.  “It’s going to be okay,” she said, sniffling.  “Mommy’s back.”

There is one really annoying side effect from having had surgery, that is, evidently, inevitable.  Constipation.  For years, literally years Emma was plagued with gastro-intestinal problems, resulting in severe constipation.  I’ve written countless posts about it and our attempts to help her.  When I am feeling better and have the time, I plan to reorganize this blog into topics such as:  constipation, sensory issues, obsessions, etc.  I’m convinced Emma’s constipation was complicated by sensory issues and a whole host of other things I may never fully understand.  What I do know is that if you’ve never experienced  constipation, and I can gratefully say I never had until this surgery, it is not something that can be adequately described in all it’s horror.  However, I feel I have new insight into how awful it must have been for Emma, for all those years, unable to feel the need to go, yet trying, her sluggish intestines not able to do the work required, her sensory issues perhaps making it impossible for her to know what to do when she did feel any sensation that suggested a need to use the toilet.  The hours she would sit crying because no matter how hard she tried, nothing would come out, or if anything did it was so impacted and painful she wished it hadn’t.

In a moment of panic I decided that all I would eat were fresh fruits and yesterday I made a pot of brown rice with carrots, cauliflower and chicken broth.  Richard found some herbal tea with Senna that was the single best thing I’ve tried so far.  Knowing that the pain medication was contributing to the constipation, I stopped taking any pain meds after the first 24 hours.  I’m still taking a sleeping pill at night, but hopefully will be able to taper that off in the next few days.

One final word, thank you to everyone who has reached out to me over these past few days.  It has meant so much.  Richard is pampering me and making me laugh.  I’m not jewish, but I’ve picked up a couple of things in my life living in New York – in yiddish there’s a word for a man like Richard – mensch.  He’s a mensch.  I’m sure there’s an equivalent word for one’s children, I just don’t know what it is, in english it would be – blessings, they are blessings, and I am filled with gratitude.

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

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Posted in Autism, Constipation, Gastro-Intestinal Issues

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Zombies

Posted on February 21, 2012 by | 6 comments

The night before Joe took the kids on their holiday, Richard and Nic watched Shaun of the Dead, a British zombie movie that is more comedy than scary.  Emma insisted she be allowed to watch too, and while Richard was worried it was too gruesome and that even though it’s a comedy she might be frightened by the walking dead and gore, I thought it would be alright if she watched for a little while.  I draw the line at any movie with sexual content, explicit or even suggested, but zombies, no problem.

“Watch a movie together!”  Emma said.  She snuggled under the covers next to me and then when all the zombies are breaking into the Winchester Pub where the few remaining survivors have holed up, she popped her head up, bugged her eyes out and made biting motions with her mouth.

“Oh Emma!  Are you a zombie?” I laughed.  “Richard!  Look at Emma.”

To say that it was hilarious, would be an understatement.  Her depiction was nothing short of brilliant and by the way, extremely convincing.

“Emma let me see!” Nic shouted above the groaning zombie noises.  For the remaining minutes of the movie we took turns making zombie faces and pretending to bite each other, before collapsing into giggles.

Emma and Nic are spending the day at a water park before heading home this evening.  When we spoke to the kids yesterday, Emma said, “Mommy had to stay home.   Mommy couldn’t go to the new hotel.  Just Nic and Joe.”   She said she was having fun, but then went back to talking about how I had to stay home.

“She misses you,” Richard observed when we got off the phone.

I miss my little zombie too.

I have to have surgery tomorrow morning, so I may not be able to post anything for a few days.  It’s nothing life threatening, but I will be out of commission for a while, maybe, probably, unless I turn into a zombie instead.  Either way, I’m sure I’ll be as good as new in no time at all.

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

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A Staycation

Posted on February 20, 2012 by | 2 comments

For Richard’s birthday, Joe offered to take both children snow-tubing and to an indoor water park for three days and two nights over President’s Day weekend.  Both Richard and I leapt at his offer.  Don’t misunderstand, we love, love, love our children.  But it’s really nice to have a couple of days and nights off.  Richard and I haven’t spent time, just the two of us together, for several years.  That was not a typo.  YEARS.  And never before have we stayed home without one or both children here with us.  When I told my cousin about Joe taking the children and how excited we were, she said, “Oh you’re having a staycation!”

The kids and Joe left yesterday.

I cannot describe how incredible it is to have the comfort of our home with only Richard and me (and our cat, Merlin) here in it.  For one thing it is very, very quiet.    And for another we can come and go as we please without booking caregivers, worrying about being home at specific hours; it’s hard to believe a large portion of the population lives this way on a daily basis.  I can’t imagine!  So yesterday Richard and I went up to MAD (Museum of Art and Design) leisurely strolled through the exhibits, even wandered up to the sixth floor to the Open Studios, where we met the artist, Fergus Walsh, a puppeteer at work on one of his wonderfully expressive clay looking creatures with funny eye balls.  Then we made our way downstairs to the Beauty in All Things:  Japanese in Art and Design show, where I saw this Bronze Vessel by Iwata Kiyomi, made of metal cloth, composite, gold leaf, silk organza and acrylic paint.

Never once did one of us say with an edge of panic, even though she was right next to us, “Where’s Emma?”  or “I think the kids have had enough, we better get going.”  We took our time, pausing at things we found particularly compelling, like the moving Japanese screens depicting the changing seasons.

Later we went to see a silly movie about two hired assassins who fall in love with the same girl, unbeknownst to her.  By the time we left the movie it was dark. We walked over to a little restaurant in the Flat Iron District we like, Basta Pasta, a Japanese take on Italian food packed with an eclectic crowd of people from all over the world.  We didn’t worry about rushing home to relieve the baby sitter.  We didn’t bother looking at the time.  Though at one point I did say to Richard, “after dinner I think I’ll text Joe and just check in.”  But just as I said that, Joe sent me an email saying both kids were exhausted and asleep having had a great day snow-tubing and swimming.

By the time we returned home we marveled at how quiet the house was.  We discussed what we would do the next day before turning off our reading lights.

“I’m glad to have this time together, just the two of us,” I said in the dark.

“Me too,” Richard said.

“I’m glad the kids will be back Tuesday night.”

“Me too.”

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

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Research & Books on Autism

Posted on February 17, 2012 by | Leave a comment

My mother sent me a fascinating article in Discover Magazine by Carl Zimmer, entitled The Brain.  A neuroscientist who specializes in autism, Eric Courchesne, has detected a pattern in the MRI scans of individuals with autism.  He found that within the first year of life the brains of children with autism are significantly larger than those of same age neuro-typical children.  He also found that a neural explosion takes place during that period, which then tapers off by age five and by the time some of those children are teenagers their brains actually had begun to shrink.  He goes on to say that this points to the origins of autism occurring during the second or perhaps third trimester of pregnancy.  He speculates that it may be a virus and/or some sort of environmental influence that triggers the overproduction of neurons during that period.

This theory is one that Emma’s neuoropsychopharmacologist suggested to us many years ago.  I am interested to see where this research will take us.

Someone asked me the other day what books on autism I recommend.  There are three specifically that I think are essential reading for anyone interested.  The first, Autism and Representation edited by Mark Osteen is an exploration of the various ways autism is represented in film, books and other forms of public media.   It is one of the more interesting books written on the subject of autism.  The other two are written by the late Clara Claiborne Park about her daughter whom she calls Elly in the first book, The Siege and by her real name Jessy in the second, Exiting Nirvana.  These two books were pivotal for me in the years following Emma’s diagnosis.    Elegant, intelligent and beautifully written, I cannot recommend any books written by the parent of a child with autism more highly.  She was the first to write of her relentless desire to understand, support and help her daughter during that unfortunate period in time when mothers were blamed for their child’s autism.  When I learned of Clara Park’s death in July, 2010, I wept.

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

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A Blessing or A Curse

Posted on February 16, 2012 by | 5 comments

I rewrote and submitted my Waging War post for the Huffington Post.  They changed some of the tenses (I hate when they do that) and published it last night – click here.  Someone commented, “It is great that you come to the realizatio­n that you can accept your child for who she is. However, I know very few parents of autistic children who confuse their children with their children’s disorder — whether or not they wage a war against autism. Children are blessings, autism is a curse.”

That comment made me think about how difficult it has been, for me anyway, to separate Emma from her autism.   I have always loved my daughter.  I have not loved her autism.  Even now, that concept continues to evolve.  I accept that this is how things are, I accept that she has autism, I accept that because she has autism there are many, many things we must do to support and help her.  I accept that there are things that will take much, much longer for her to  learn and other things that she comes to with no trouble at all.  I accept that who she is has as much to do with the autism piece as it does the Emma piece, that in fact the two are not separate.

Any parent with a child on the spectrum has wondered what their child would have been like had they not had autism.  Would she still have near perfect pitch?  Would she still have an amazing memory, the sort of memory that remembers specific people, places and events when she was two years old?  What sorts of things would she like doing?  Presumably her favored activities: the carousel, the zoo, The American Natural History Museum and FAO Schwartz would have worn out their welcome by now.  Would she still fear dogs?  Would she be the sort of child who had many friends or just a few very close friends?  What classes would she excel in?  What subjects would captivate her?  Where does the autism end and Emma start?  Can we really do that?  Can we really separate the two?  Emma’s autism informs every aspect of her life.  And yes, she is a blessing.  Exactly as she is, with autism or without it.

Nic & Em at the Metropolitan Museum of Art

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

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The Shower

Posted on February 15, 2012 by | 2 comments

Emma washed her hair this morning.  By herself.  With almost no input from me.  Emma is ten years old.  Emma has autism.   I used to think those few sentences would suffice.  Keep it short and sweet, age, diagnosis, what more needs to be said?  But I was wrong.  Most people who do not live with a child with autism have little or no idea how monumental something like washing her hair unaided is.  Okay, so I stood outside the shower and had to do a little coaching – “Lather the shampoo on the top of your head too, Em.  Good, now behind your ears, don’t miss the hair on the sides, just above your ears.  No, not like that, Em.  Like this.”  Then I demonstrated by pretending to shampoo my own hair, as she watched me and did her best to mimic my movements.

For the past four years, since Emma began preferring showers over baths, Richard or I have aided her in washing herself and her hair.  Richard’s swimsuit hangs in our bathroom, damp evidence of his continued support.  The few times I tried to let Emma wash her hair on her own, I regretted it. Once her hair dried, revealing large patches of unwashed and now even greasier hair, it was all too apparent that help was still required.  As with everything, it is not that Emma cannot eventually wash her own hair, it’s that it takes a great deal longer for her to learn.  Years, actually.  Many, many years.  “Maybe we should move to France,” I suggested one day after a particularly lengthy and difficult session trying to get Emma to rinse the shampoo out of her hair.  Richard looked at me quizzically.

“They don’t take bathing as seriously as we Americans do.”  (To all French people whom I have now possibly offended, forgive me for my blatant stereotyping.)

“Uh-huh.”

A bit later Nic announced that he too, would like to move to Paris.  When I inquired as to why he thought this was a good idea, he mentioned the museums, the great food, I’m pretty sure he even said something about their coffee being superior, a beverage he isn’t allowed to have.  But I knew his desire had more to do with the fact he doesn’t love showering either.

When Emma got out of the shower, she pulled a towel around her body.  Carefully she began to dry her feet, legs, stomach, arms, just as she has been coached to do for all these years.  “Em, you’re doing such a great job,” I said.

“Drying by myself,”  she said, sternly.  Then she corrected herself, “I’m doing it by myself.”

I nodded and smiled at her.

“Mommy, go away,” she said.

So I did.

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

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A Birthday Party

Posted on February 13, 2012 by | 3 comments

Emma does not get invited to many birthday parties.  In fact I can count on one hand the number of times she’s been invited to a birthday party in the last year.  Okay, make that one finger.  Don’t misunderstand me, there is no resentment here.  The children with whom Emma goes to school all have autism in varying degrees, food allergies are rampant, each kid has their own specific sensory issues, some have physical challenges as well, so for a parent to take on the idea, let alone put into action, the planning of a birthday party, is a major undertaking.  The other children Emma knows or has any contact with are either her cousins or friends from before her diagnosis and most of them are Nic’s age, not Emma’s.

So when my cousin invited her to her daughter’s birthday party, Emma was so excited, she talked about it for at least a week prior to the actual party, which was this past Saturday afternoon.  Richard was sick with some nasty bronchial sounding cold, lending him a – come hither – husky quality, opted to stay home and not risk infecting all the children and their families with his germ riddled body.  (TMI – too much information – as Nic would say.)  Emma insisted on wearing a black shirt, embellished with little beads at the neckline, leggings and a plaid skirt, all but the leggings were a size too small, despite my suggesting she wear something a size larger.  “No!  Please!  I want to wear this one!” She pleaded.

When we arrived, Emma said hello to all her cousins and though I kept my eye on her the entire time, she did very well.  There were some 30 children aged 5 – 12, mostly girls and mostly Emma’s age – 10.  The family had hired a couple of clowns who did an hour long routine, with gags, pratfalls and “magic” such as the man pretending to eat a piece of kleenex while the woman demands that he spit it out, only to have her pull the kleenex from his mouth, but instead of kleenex coming out, yards of multi-colored tissue pour forth, leaving one to wonder how he managed to get all of that in his mouth in the first place.  An hour is a long time for a child who may or may not understand all of what is being said and done, to sit.  But sit she did.  Right in the front with all the other girls, watching and though I don’t think she laughed at any of their antics, she did seem intrigued.

After the show ended, the other children ran around playing chase while Emma played with the string of a balloon.  When it was time for us to leave, Emma put on her shoes and coat and said, “We went to Gaby’s birthday party at Gaby’s house.”  And by the time the elevator let us out onto the street, Emma looked up at me and said, “We went to Gaby’s house a long time ago.”

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

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Waging War – Not So Much

Posted on February 10, 2012 by | 2 comments

I think of myself as pretty determined.  Someone who doesn’t take “no” for an answer.  A person who doesn’t give up easily.  When Emma was diagnosed I thought of “autism” as something to battle, wage a war on.  I saw it as something we needed to get rid of, a detrimental condition, which needed to be excised.   Emma is not “high-functioning” and while there are many people who reject these delineations of high and low functioning in describing autism, I do not know many parents of children with autism who fall in the moderate to severe category who object.  A child who needs support with daily living skills, while also being non-verbal or almost non-verbal has a very different set of issues than a high-functioning child who is mainstreamed and will most likely need support in holding down a job.  Both will need support, but one will need a great deal more and may never have the opportunity to live independently.  There is a difference.

In the over seven years since I learned of autism and first heard the word applied to my daughter, I find I am slowly letting go of the desire to wage an all out war on Emma’s autism and have been coming around to a slightly different view.  A view I hope will prove to be more productive and less stressful, for all of us.  Allow me to state the obvious – Emma is a little girl, first and foremost.  She is funny, has a great sense of humor, loves music and dancing, loves to perform.  Emma feels tremendous anxiety when she doesn’t know how to do something or is asked a question she doesn’t have the words for or is unable to fully grasp the concept of.  She tries hard.  She makes Herculean attempts to do what is asked of her.  She has sensory issues, which I still do not fully know how to help her with.  She has internal issues I no longer expect anyone to be able to diagnose.  And she is my daughter.

A few years ago she went through a period when she raided my lingerie drawer on a regular basis.  Richard and I (and sometimes guests) would be sitting in the living room when all of a sudden Emma would burst forth, donning a bra and pair of my underwear, but otherwise naked.  The bra haphazardly flung around her shoulders, the cups puckered, the underwear sagged and falling off, she gripped a corner in one hand to ensure they didn’t completely abandon her.  The first time she did this, Richard began laughing, while our guest, I think it may have been an electrician who was fixing a blown lighting fixture stared in stunned silence from his perch on a ladder, while I  hustled her back into our bedroom, out of view.  The second time she appeared, wearing the same combination – never any of the more colorful and attractive lacy lingerie I happen to own, always the same set of sensible, no-nonsense skin-toned bra and underwear – I was able to laugh with Richard, before telling her to go put everything back.  Her raid-mommy’s-lingerie-drawer episodes were interspersed with raiding my shoes, thankfully never at the same time, it was one or the other, for which I am grateful.   Her favored pair of shoes was a pair of red suede pumps, which she would clomp around in.  During these forays into my things, Richard would say things like – “She’s mommy’s little girl!”  or “She’s such a girl!”

That I love her, goes without saying.  She is my daughter, Emma.  Who happens to have autism.  The autism piece is complicated, the beautiful little girl/daughter piece is not.  I used to view Emma’s autism as something separate from her.  I used to think of it as something, like a tumor that needed to be removed.  I am coming around to having a less draconian point of view.  I am beginning to have some acceptance around it.  I find myself thinking less about ridding her of it and more about helping her be all that she can be.  Waging war has been exhausting.  Maybe, in the end, it all comes down to nothing more than semantics, but I am tired of battling something that does not need to completely define my daughter.  I am lucky, Emma is verbal, Emma has shown that she can and will learn to read, write, communicate more appropriately, focus, and is able to understand abstract concepts such as time, names, part vs whole, same vs different, etc.  It just takes a great deal more practice and time.

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

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Teaching a Name

Posted on February 9, 2012 by | 3 comments

When Emma was a year old, in a moment of impatience we bought her a baby doll for Christmas.  Despite the fact she showed no interest in dolls of any kind, despite the fact she showed little interest in any of the toys we tried to entice her with.  Emma was much more of a doer than a child who sat happily playing with a toy.  This was a kid who liked to move.  Take her to the playground and she made the other kids look lethargic.  I admit, I took a certain degree of pride in her rejection of all toys and her desire to move and run and slide instead.  Emma’s disinterest reminded me of my father who shunned all holidays, grousing that they no longer celebrated what they were intended to, but instead fed the insatiable Hallmark Greeting Card’s appetite for cheap sentimentality and  had become a financial boon for ad agencies.  His grumpiness about it all, increased with his age.   Emma’s resolute rejection of all toys, her disinterest in videos, movies, and anything else that required her to sit still, would have made my father proud.

The baby doll we purchased was pudgy, with blonde pigtails, and came with a little toilet, hairbrush, mirror, bathrobe and towel.  All that was missing was a mani/pedi kit and perhaps some massage oil.  I bought a couple of little playsuits for the doll and wrapped everything up in pretty paper with a big satin ribbon.  We had to help Emma as she showed no enthusiasm in her gifts piled under the Christmas tree.  She begrudgingly humored us by tearing open the present, but showed no excitement, it was as though it were a chore,  something that was expected of her.  When she saw the baby doll, securely fastened in it’s box with a clear window so that she could see it, but not actually reach it, she lost all interest and wandered off.  “Emma, look!  It’s your very own baby doll!”  I exclaimed.  “What are you going to call her?”  Being ignored during those early years was something we had grown used to.  Still, I persisted, carrying the baby doll over to her, I said, “What’s her name?”  Emma refused to look at me or the baby doll.

Years later, during out DIR (Developmental, Individual Difference, Relationship-based Model, also known as floortime) phase, the baby doll, now joined by a number of other baby dolls, groovy girls, Jessy and Woody from the Toy Story, Tim Burton’s Corpse Bride, each one evidence of our ignorance and dogged determination to engage her in the world of make believe, lay untouched in a pink plastic bin near her bed.  In a moment of inspiration I yanked the baby doll from its bin and thrusting it in Emma’s face, asked, “Oh look Em!  What’s her name?”  Emma said nothing, but I persisted.  “What do you call her, Em?”  And then Emma spoke.  “Doll,” she said.  “Yes, but what will you call her?”  I was nothing, if not determined.  “Is her name, Tabitha or Katherine, Anastasia, Cynthia?  What’s her name, Em?”  The idea that naming something was not a concept Emma fully grasped, never occurred to me.  When Emma then repeated the names I was throwing out, I eventually gave up and as I was leaving, Emma said, simply, “Doll.”

And of course, she was right.  It was a doll.  To Emma that was all she was.  A doll.  For a child with little or no ability to understand the world of make believe, the idea of naming a doll, must have seemed bizarre.  Why would one do that?

Last weekend, at Barnes & Noble, I showed Emma a book called Biscuit, a beginning reader book.  Emma took the book from me, sat down on the carpet and pointed to the first word.  “Biscuit, that word says Biscuit.  That’s the dog’s name,” I said.  Emma nodded and continued to read the book, stumbling over a couple of unknown words, but for the most part being able to get through it with little help from me.  As I sat with her I remembered her baby doll and it occurred to me, she does not fully understand the concept of naming.  It is something I will attempt to teach her this weekend.

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

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A Case of Mistaken Identity

Posted on February 8, 2012 by | 1 comment

The latest issue of the magazine AARP arrived last week.  It’s the hot potato in our house as Richard will place it on the keyboard of my computer or by my things to take to work.  When he’s not looking I will then surreptitiously put it on his desk in our office, both of us denying that we’ve had anything to do with it.  “Did you put this on my computer?” I’ll ask, waving the magazine in front of him as I head out to work.  “Nope.  Didn’t see it,” he’ll reply.  “You know, it’s your magazine.  It’s addressed to you,”  I’ll inform him, as though he hadn’t noticed or that this will change the fact that we are both over 50 and therefore deserving of its presence in our home.  Truthfully, I am careening toward 52 at a frightening pace.  How did I get here – I find myself wondering.

Last Friday, there it was on my desk, a reminder of the passing of time.  Sharon Stone graced the cover, beaming, in all her youthful beauty.  The only indicator of her advancing age were the reading glasses dangling from her right hand.  I admit, I took some solace in seeing that she too requires reading glasses.  Emma bounded into the office and plopped down on my lap.  She looked at the photo of the dazzlingly gorgeous Sharon Stone and said the most beautiful words perhaps she has ever uttered, “It’s Mommy!”  she exclaimed, before demanding to watch a YouTube video.  (It must be said, I did NOT correct her, I should have, I know.)  She could have asked for anything at that point.  The world was hers for the taking.

In a moment of pure vanity, a moment I admit to being ashamed of,  I showed her the magazine last night, just to see if she hadn’t somehow changed her mind.  Sure enough, she glanced at it and said, “There’s Mommy!”

Love that kid.

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

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Service Dogs and Marriage

Posted on February 3, 2012 by | 2 comments

There’s a terrific story in the New York Times about service dogs for people and children with disabilities.  (This post is also about marriage, bear with me. I know it’s a little convoluted.)  The article begins with a couple, who in 1999 adopted two babies from Russia, only to realize after a few years that their son was not developing in the same way as their adopted daughter.  After much distress and many specialists, a developmental pediatrician diagnosed the child with fetal alcohol spectrum disorder.  As the child’s behavior became more problematic and as he grew bigger and stronger, the family’s concerns grew too.  The mother heard about an agency providing children with disabilities service dogs and so she brought this up to her husband, whose initial response was negative.  Over time he came around, they got a service dog, the boy bonded with it, the family was able to sleep through the night without disruption from their son; it’s a wonderful story full of hope for those with disabilities and their families.

As I read the article I had the following thought process:  We need to get a service dog for Emma!  (Forget that she is terrified of dogs.)  If we got a service dog for Emma, she would get over her fear of dogs, which would lead to her finding this particular dog calming, (forget that she’s not an out-of-control child to begin with) and the dog would help her sleep longer on the weekends.  (Forget that we live in New York City and the dog would need to be taken out first thing in the morning.)  Because he would help her sleep past 6:00AM on the weekends, we would also be able to and wouldn’t that be lovely?  (See above parentheses.)  I will not bore you with the details of my continued thinking, anyone with even a passing familiarity with the – If You Gave A Mouse A Cookie – series will know how convoluted the mind can get, if one encourages it.  Suffice it to say, I went from service dog for Emma, to thinking about our adored cat, Merlin, whom Emma ignores, to a meditation on how fortunate I am to have such a sensible and loving husband (who would be completely against this whole idea and he would be right).

Which brings me back to marriage.  I am in no way an authority on marriage, what I can say about it, is to state the obvious – It’s helpful to marry someone you really admire and like.  Adoration is helpful too.  Richard and I joke that it took us about ten years to muscle our way into a good, strong marriage, but thankfully we both kept showing up.  This is where a healthy dose of determination and tenacity can work in ones favor.  Neither of us are particularly good at giving up, in fact, we both tend to stick with something long after we probably should have let it go.  But in our marriage sticking with it has proven advantageous.  It doesn’t hurt that I adore, like, love AND admire the man, even when he’s grumpy.  Even when he doesn’t agree with me.  Even when he shoots down my wonderfully creative ideas – such as getting Emma a service dog – (an idea I haven’t actually verbalized, but know he would not want to discuss) I still love him.  I know somewhere in the dark recesses of my mind that even if he’s not right, he has a point.  A point, that with time, I might be able to come around to, at least, hearing.

It helps that I married an almost perfect man of course.  I know.  I’m very, very lucky.

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

This morning Emma wore her new shoes to school

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New York City

Posted on February 2, 2012 by | 1 comment

Every weekday morning I get off the subway and as I walk to my studio, I see a version of this (minus the large truck and woman carrying a newspaper) –

Seeing Manhattan in front of me as I walk to work fills me with optimism; anything seems possible.  It reminds me of that first evening when I flew into JFK Airport to attend Parsons School of Design.  After hailing a cab, all my belongings packed in the trunk, we drove toward Manhattan.  I looked at the city’s breathtakingly beautiful skyline and knew I was home.  That was in August of 1981.  I love New York City.  I love the buildings, I love the parks, I love the art, the museums, the theatre.  I love that on any given night one can see world class dance, music, performance or dine at some of the best restaurants in the world.  I love the diversity of New York, a city that draws people from all over the world.

When I am with Emma, my beautiful girl who gallops more than walks, her head down, her arms flailing about, no one pays attention.  I am grateful when we are in the subway and the doors close with the accompanying bell sound and Emma mimics that bell, but says “Dank you!” in the same tone and volume, most people don’t bother to look up.  They’re New Yorkers after all, far too busy to be concerned with the weird utterances of a child.

I love how the city is in a constant state of flux.  The view from our living room windows, once dominated by the World Trade Center towers, show an ever shifting skyline of downtown Manhattan, a constant reminder of how everything changes, whether we want it to or not.

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

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