Tag Archives: parenting an autistic child

Emma’s Unique Way of Telling Time

“The clock says four and five and seven,” Emma can be heard saying.  There’s a rustling sound and then an audible sigh as she settles herself on the floor six inches away from the “clock,” which is actually our DVD player.  I can just make out the shape of her back.  She’s watching the clock.  Literally.  I roll over onto our cat Merlin, who has taken to curling himself up into a tight ball against my upper body.  The heat he emits causes me to wake in a sweat several times throughout the night.  I’ve grown used to this and am grateful in the knowledge that when menopause hits I will be that much better prepared.  Merlin uncurls himself without resentment and arches his back.  All witchy and halloween-like, he gives me a baleful stare with his yellow/green eyes.  Emma stays put.  ”Four and five and nine,” she mutters.

The morning light has yet to reach our northern facing windows.  Richard reaches for his cell phone.  We are inundated with technological gadgets of one kind or another.  iPads, iPhones, everyone has at least one computer, Richard and I each have three.  Despite the fact we do not watch television, there are always several screens of some kind on at any given hour of the day or night.  ”What are you doing?” I whisper to Richard.  As if Emma cannot hear me.  As if she will not take this as permission to get into our bed with us.  

“Checking the weather,” comes his reply.

“Eighties.  It’s going to be in the eighties today,” I tell him.  I know this because I’ve already checked the weather and my email and am almost through writing a daily “to do” list having been up since three and four and two, as Emma would say.

Emma stands up and bounds over to my side of the bed, beaming.  ”Hi Mommy!” she says in a loud cheery voice.  I am reminded of that commercial where a schlubby looking guy gets up and says in a grumbly voice, “It’s time to make the doughnuts.”  Was that actually an advertisement for doughnuts?  I can no longer remember.  

“I’m getting up,” Richard announces.

Richard’s first novel is being published in the next 48 hours.  There’s been a whirlwind of activity, he received a five star review from a major book reviewer on Tuesday, there’s still a great deal to finalize before we actually have a physical book, his novel, in our hands.  It’s all very exciting and while all of this is going on there are the very real daily things that still need to get done.

“Gotta get back to work,” Richard says as he wanders into the bathroom, turns on the sink faucet and then begins talking to me again.  I cannot understand a thing he’s saying.  The faucet’s running, he’s at least 20 feet away with his back to me.  Seriously?   I so cannot hear you.   Emma is grinning at me like the Cheshire cat and now leaps into bed next to me, while deftly pushing Merlin aside.  This is all done with a certain matter-of-fact-sorry-kitty-don’t-take-it-personally sort of way.

I smile at Emma, reach down to stroke Merlin, lest his feelings are hurt.  ”What?” I yell to Richard.

“Never mind.  I’ll tell you when I’m out of the shower,” Richard shouts back.

It’s not even five and one and five.  Or for those of you unfamiliar with Emma’s unique way of telling time, it’s not even five fifteen.  I check Emma’s arm and hand to see if the angry red bumps, the tell tale marks left from last night’s meltdown when she bit herself over and over again, have calmed down.  They have.  In another day they will turn bluish-purple and by the weekend will have acquired a yellowy brown cast.  She pulls her arm away and stares at me.  ”Emma’s sad.  Emma want to go to the sprinklers.  I know.  I know baby.  But listen, you cannot bite.  You cannot go to the sprinklers.  Maybe tomorrow,” she says, nodding her head and frowning.

I talk to her about how she can go to the sprinklers after school today.  I tell her we are going to Nic’s school concert to hear Nic play his saxophone this evening.  She smiles.  She begins to hum the song Nic composed last year and played at a piano recital.  Her memory continues to awe.  She hums the exact piece note for note in its entirety.  When she gets to the end, she looks at the clock, “It’s five and three and one.  Do you want to make cereal and toast?”  She bounces off the bed and races into the kitchen without waiting for my reply.

Last night Emma and I went up to the roof before bedtime.  If you look just to the left of Emma’s face, you’ll see the Freedom Tower, more than halfway finished.

My latest piece My Fear Toolkit published in the Huffington Post

A Fantasy for Parents of Newly Diagnosed Autistic Children

I wrote about some of these ideas before in the Fantasy For Autists post a couple of weeks ago.  This is a follow up post, a fantasy for parents of newly diagnosed autistic children.

When Emma was first diagnosed I felt fear more than any other emotion.  It was overwhelming and crushing.  The word “autism” carried with it a weighty sense of doom.  People have described it as akin to receiving a “life sentence,” it was a word I knew almost nothing about, and what I did know wasn’t good. “We don’t know what causes it,” “There is no cure” were the words we were told many, many times by the various specialists we went to, seeking help for our beautiful, happy, fiercely independent daughter.  Those words were said matter-of-factly, but the grim set of the lips by those who spoke those words belied the truth, it seemed.  Some specialists would follow those words with a sad shake of their head, often done while uttering, “I’m sorry”  as they ushered us out of their office.  The doctor’s appointment now over, we were left standing alone, confused, terrified and overwhelmed by what we could not understand, by what could not be explained, by what seemed like a dark cloud enveloping every aspect of our lives.

Then there were the depictions in the media of the devastated families struggling to make ends meet, the scary images of the perseverative, stimming children in full meltdown, family members run ragged, siblings, silent and resentful, spouses angry and argumentative, and the autistic child, always somewhere in the background, seemingly oblivious to all the chaos they supposedly had created within, what would otherwise have been, the perfect American family, had they not been born.  While this may help with fund raising by preying on people’s fears and pity for those less fortunate than themselves, it is these depictions that the newly diagnosed child and her family will see.

Can we take a moment and consider how these depictions make the newly diagnosed child feel?  What message is being sent?  This child that everyone is so sure isn’t picking up on any of this, but perhaps is.  What if that child understands a great deal, even at the young age of a year and a half ?  What if that child is extremely intelligent and feels the overwhelming sadness their very existence seems to be causing their family?  What if these feelings are then intensified by the things that are said between family members in front of the child or within hearing distance of the child?  How would this affect the CHILD?  Think if you grew up feeling you were a mistake, damaged and broken?  What if the words that were used about you and to you were said with anger, exasperation and annoyance?  What if instead of being given the help you so desperately needed, you were told that the things that helped you concentrate and focus were wrong?  What if you were told almost everything you did was wrong?  Would that help you do things differently?

These negative images are also what will flash through the minds of the parents as they are given the “dreaded” diagnosis.  Listen to any newscast about autism.  The way the news anchors say the word – “autism” – the voice lowers, there is often a hesitation before the word is spoken.  Look at the statistics, the alarming statistics that cause everyone to feel frightened, because we know so little, so we fall into fear, fear of the unknown, fear of what might be, fear of the future, fear of the present, fear.  Is all of that fear helping any of us?  Does fear help us as parents do a better job parenting our autistic children?  Does the fear give you patience, does it help you when your child is unable to express themselves and so acts out?  Does that fear make any of us behave better, more appropriately?  Does the rampant fear help us sleep at night?  How’s all that fear working out for you?  Does it help?  And if you think it does, I’d love to know, how?

But what if this was not the way families were introduced to autism?  What if instead of sitting with the sympathetic, yet professionally aloof specialist the family was introduced to a group of self appointed adults, all of whom were autistic. What if these adults were verbal and nonverbal, women and men, spanning a wide range of ages?  What if each Autist “spoke,” whether through language or by typing or through a voice activated device?  What if the families were able to ask questions and were allowed to approach these Autists and even were able to have one or two or more assigned to them, the way a social worker is now, during Early Intervention?  What if those Autists were available to the family and their autistic child?  What if these were the people the family could turn to when they had questions, needed help finding resources, schools, methodologies or just wanted to check in with someone who might understand their child better than any pediatrician, psychologist, developmental pediatrician or neurologist could?

What if each Autist was given an opportunity to discuss what it was like for them growing up, the things that helped, the things that didn’t?  What if those Autists discussed how to teach life skills?  What if each family went away from this initial “welcoming” meeting with a folder that included a handbook written by Autists, a list of resources of Autistic doctors, neurologists, pediatricians, Autistic run schools with curriculum approved by Autists and others designed by Autists, and a list of  some of the essential things parents need to know and remember as they help their autistic child live and thrive?   What if, instead of being bombarded with frightening stories of self injurious nonverbal children we were shown videos of nonverbal Autists helping those children learn how to cope?  What if we were shown videos and news programs about all the Autistic adults who are pursuing their passions?   What if there were Autistic lawyers, neurologists, accountants, pediatricians, veterinarians, Occupational Therapists, Speech Therapists, Teachers, Educators, Head Masters, scientists, musicians, singers, performers, painters, writers, that we were all exposed to and knew about?  How would this change how we viewed our own children?  What if we were given the support we needed to help our children reach their potential without sadness, fear and pity?  What if?

My wish for Mother’s Day is that one day this will no longer be a far-fetched fantasy, but will be a reality.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

Emma’s Literacy

Today Emma wrote the following sentences:

It is a good visual reminder of how nicely she is progressing.  After she wrote these sentences she became frustrated with two longer sentences she was suppose to remember and write.  I finally had to break them down into smaller pieces.  We then worked on reading comprehension.  The idea being – it won’t matter how well she reads if she cannot understand what it is she’s just read.  Like many children on the spectrum, Emma has a tough time saying what a story is about.  So we are slowly trying to build a foundation for her to be able to do so with increasing ease.  At the moment it remains very difficult for her.

Yesterday and this morning have been hard for Emma.  Her routine was interrupted, I spent a good part of yesterday cooking, we had guests for Thanksgiving and though Emma loved having family and friends over and sitting with us at the dinner table, I think the disruption proved tough.  She’s been out of sorts, a little crankier than usual.  This morning she kept insisting she go to the Central Park zoo and the big carousel; all things Richard did with her yesterday.

I never know what the reason is for her steps backwards, particularly when we can also see her many steps forward.  I keep hoping things will just move forward with no steps back, but this is unrealistic.  I know.  I have to keep my eye on the bigger picture and not get weighed down with the little daily upsets.  As we worked together this morning we had to stop several times as she became too upset to continue.  Her frustration is in glaring evidence during these moments.  She clenches her fist, hits her legs or pinches herself, so we had to stop each time and wait.  I understand how frustrating it must be to not be able to make the words come out right, to not be able to retain a seven or eight word sentence, to want to give up.

“We have to keep trying, Em.  I know it’s hard, but you can’t give up.”

“I know,” she said, nodding her head and looking sad.  ”I know.  We have to do it again.”

“That’s right, Em.  You’re doing great.”

“Last time.”

“We’ll do it until you get it.”

“Okay.  Last time.”

And then she did it perfectly.

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

Another Mom’s Comment

This comment from the “On Engagement” post was so beautiful I wanted to share it.  Her daughter is also named Emma.

“I love your Utopian world. I wish it existed. I avoid going to events sometimes because I just don’t want to have to have Emma deal with the looks, or me at times. Her tantrums are nothing like that of a two year old either. She is eight, and carrying an eight year old out of a store spitting and biting and screaming in a piercing , gut wrenching manner gets many looks. One time Emma lost it in a fabric store. I should have known better because it is overstimulating. She loves textures, but does horrible in overstimulating environments. Anyway, it ended abruptly when I had to take her screaming and kicking out of the store. I held onto her for dear life, wishing I had parked closer, hoping no one would see me. I almost accomplished this endeavor when a woman started approaching me as I was desperately getting Emma to buckle her seat belt. I was sure she was coming over to tell me what a horrible mom I was, how social services should be called on me because it felt so violent as I held onto Emma and I imagined it looked violent as well. But instead, she came over and asked if she could hug me. She told me her son was autistic and has been a participant in much worse tantrums and just wanted me to know I was loved. I felt an angel had been sent to me. What a world of difference it would make if people were less worried about judging others and more concerned about helping others. A smile to a parent that is in need can make such a difference. We are all mothers, or daughters, or fathers, or sons. That is something that binds us all. Why not honor that in our daily encounters and help a struggling parent, not shun her, and refrain from assuming.”

Happy Thanksgiving!

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

Literacy, Diets, Progress

Dr. Marion Blank has written a terrific piece for the Huffington Post regarding the 60 minutes segment on APPs for autism and the current ways in which language is taught.  For anyone with even a passing interest in language or autism, I encourage the reading of it.

An update on Emma, her diet, her progress:

Emma ate about three tablespoons of chicken and brown rice two nights ago and tasted the pumpkin mousse I made.  I will attempt to make coconut milk whipped cream this evening in preparation for our Thanksgiving feast.  I want to have several things Emma might like, so I am planning to prepare Maple Syrup glazed Turkey, roasted carrots and sweet potatoes and some kind of desert she might enjoy (she didn’t love the pumpkin mousse or pumpkin scones, so I’ll try some other recipes) as well as things the rest of us will enjoy – we are having between 12 – 15 people, many of whom are bringing things!  I am thinking of writing a cookbook entitled All The Delicious Things I’ve Made That Emma Won’t Eat.

I worried the other day (someone pointed out that I am always worrying about something – I blame my mother for this – she is a known worrier, plus I’m a New Yorker so there’s no hope for me) that Emma is just as rigid now as she was before the diet.  Instead of only eating six things, all of which were dairy or wheat, she now eats six other things, but as Richard pointed out, at least they aren’t dairy and wheat.  I think my expectations were high (they tend to be) when we began the diet; I had read in many cases the child, once off dairy and wheat, expanded their diet dramatically.  Don’t get me wrong, it is wonderful to see Emma eating brown rice and roasted chicken.  In fact it’s a huge achievement on her part.  I’m taking a deep breath now and will bask in the glow of brown rice and chicken.

Okay.  Now that I am filled with gratitude, to continue -

To date we have seen no identifiable cognitive or behavioral progress as a result of this diet.  We see her doctor in another three weeks.  I am still hopeful we might see something by then.

We received a report from her school that Emma threw a chair across the room on at least two occasions and pulled one of the TAs hair.  Obviously this is not good news.

Another deep breath, focusing on the joys of brown rice and roasted chicken.

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

A Little Gratitude

There is a lot of great news out there regarding autism.  Many families have tried biomedical and therapeutic interventions with terrific results.  The website, autism.com has great information about treatments that have worked for many children on the spectrum.  No one can predict whether any of these will help your child.

When I was in my early thirties I sought help from the medical community for my bulimia.  I was depressed, could not stop the destructive cycle of binging and throwing up.  There seemed little to live for.  I phoned several rehabs and after speaking with several doctors and eating disorder specialists, I was told the longer a person had an eating disorder, the more intractable and harder to treat it became.  When I mentioned I had been bulimic for going on two decades there was silence.  I remember hanging up the phone and feeling utter despair.  I felt a similar despair when Emma was diagnosed.  But then, as I had when I was still bulimic, I became determined.  That determination served me well during those difficult years.  I never gave up and eventually found enough people who were able to help me, hold my hand and advise me.  I learned I couldn’t recover on my own.  I learned how to ask for help.  I learned to lean on others.  And I learned that in my darkest moments, if I remembered to reach out to someone else in need, to offer to help them, my own problems diminished.  I have tried to live my life in this way ever since.

Sometimes when I read about other people’s successes with their children, while happy for them, I feel sad for Emma.  I believe it’s natural to feel this.  I will never give up on Emma.  I will continue to do all I can to help her and while I do, I continue to work on my impatience while remembering to be grateful for each moment with her.

A little gratitude goes a long way.

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

Bruno Bettelheim

Most of us have heard, and many may have even read, some of Bruno Bettelheim’s ideas and work.  For those of you unfamiliar – Bruno Bettelheim, born in Austria, came to some prominence when he became director of the Orthogenic School, in connection with the University of Chicago for children with a variety of emotional and neurological issues.  His book, The Empty Fortress was published in 1967; read by many and touted as the final word on autism and its cause – the aloof and emotionally withholding mother.  At the time, his views on the subject became widely known and the treatment for autism was to put the mother in psychoanalysis.  The belief that the mother, in her lack of love for her child, caused the child to withdraw from the world was adopted by many.  Bettelheim claimed a high success rate of children with autism in his school.  It was only until after his suicide that many of his former students came forward with harrowing tales of abuse.  Much of Bruno Bettelheim’s work and ideas have since fallen into question.  The concept of the “refrigerator mom,” something he was an advocate of, has proven to have no validity.

Last week I had a piece published in the Huffington Post – http://www.huffingtonpost.com/ariane-zurcher/children-with-autism_b_1080076.html – a woman, now in her nineties wrote to me about her experience of being the mother of a child with autism, diagnosed in 1961.  Rather than examine her child when she sought help, she was put into analysis and blamed for her child’s neurological issues.  She wrote a book, A Few Impertinent Questions, http://301­45.myautho­rsite.com/, that tells of her painful journey.  It is a powerful story.

As I read her book, I reflected on what we think we know now about autism and what will come to light in the future.  Fifty years from now how will we view what we think we know?  What ideas will seem almost comical because we will have learned so much more.  What therapies will have fallen out of favor?  What new therapies will have taken their place?  What will be proven and seem obvious in fifty or sixty years from now, but are not obvious to us now?  I, most likely, will not be around in another fifty years to know the answers to these questions, but I am sure much will be revealed.

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

Isolation, Autism and a New Camera!

It’s interesting to note that autism, something defined by a lack of social skills, which in turn can lead to isolation in the children who are diagnosed with it, can have an isolating affect on the parents of those children for very different reasons.

How many of us have lost friends, seen some slip away after our child’s diagnosis while others we chose to avoid because they seemed unable to understand?  And what about family members?  When Emma was first diagnosed I felt such fear and worry and turned to a number of girlfriends I had at the time.  A couple of them were suddenly too busy to get together, while others just didn’t reach out.  Perhaps it was too much for them, too painful, who knows, but I felt incredibly sad when I realized those friendships were not able to withstand the diagnosis.

Now seven years later since we received Emma’s diagnosis I have new friends, many I’ve never met, others are from my life before, some even came back after having left for awhile.  What is wonderful though, is that those that are no longer in my life, I rarely miss and those that are in my life I am grateful for.

On an entirely separate note – Richard, my wonderful husband, bought me an early Christmas present, a new camera!

Emma at gymnastics on Sunday

Getting a little help from Brett

This morning waiting for the school bus

This is a hawk we saw in Union Square Park on Sunday!  (This has nothing to do with autism, I know, but isn’t he beautiful?)

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

The Diet

It’s been a month.  Last Monday I wrote that it had been four weeks and two days, I was wrong.  It just felt like it had been a month.

One month ago, on October 16th we began Emma on a GF/(modified) CF/ soy free and a great many other free diet.  This is our second go around with this diet.  The GFCF diet was the first thing I did when Emma was still two years old, to no noticeable change.  However, that first time she began eating a great deal of soy – soy yogurt being her favorite.  I was working with a DAN doctor at the time who tested her for hundreds of foods but never said anything about all the soy she was eating.  So after three months we took her off the diet and again saw no change.  This time I’m working with a naturepath/physician who also tested her for hundreds of foods.  This time, the list of foods to avoid was much longer than the first: cocoa, corn, potatoes, chicken egg whites, all red skinned fruits and vegetables, bananas, peanuts, onions and garlic.   Emma did not test negatively for wheat, but he advised we take her off it anyway, just to be safe.  Oddly, she also didn’t test negatively for sheep and goat’s milk, so we’ve allowed her to have sheep’s milk cheese, sheep’s milk yogurt and duck eggs.

Still we have witnessed very little change in Emma.  We’ve grown used to this.

I keep thinking I’m going to find something, something that other families have tried with significant results, but so far, other than Emma’s literacy program, we have not.  It’s frustrating to try various things and see little, if any, change.  As I’ve written before, we think we are seeing an increase in physical affection, but it’s hard to say this with certainty.  We have definitely not seen a profound change of any kind causing us to feel without a doubt that this diet has done anything.  Still I will give it more time.

Why some of these interventions work for some children and not others is something that’s been debated for awhile.  Why is it some children are mainstreamed after a few years of intensive 40 hour a week ABA, yet for children like Emma, they were not helped?  How is it that some children go on a GFCF diet and within days are transformed from a screaming, frustrated, incoherent child to one who is speaking in full sentences, playing with toys in an “appropriate” manner and displaying a never before seen curiosity of those around them?

It is easy to blame oneself, but I don’t believe that is the answer.  I know of too many cases where the parent has tried a great many things only to find their child did not respond.  I wonder whether it is the children who do respond, who are the exception.  While this thought depresses me, I have to wonder whether it isn’t more accurate.

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

What is

A Zen buddhist teacher told me once – anything that happens in life is an opportunity to practice.  I remember my feeling of irritation when she first said that to me.  As the years pass I think of her and her statement often.  Whatever it is that is happening – if I can suspend my judgement and not label it as good or bad, but just as what is, I have taken away one more obstacle.

I think of Emma, beautiful, amazing Emma, who is unique and like no other child.  Her autism is neither good nor bad, but what is.   Even as I write this I can feel the tug in my chest, the little voice whispering to me, no – it is bad.  As though by accepting I will have given up.  As if my judgement will somehow make it go away.  As though the label will somehow change it.  I am not in the we-must-accept-and-do-nothing group.  I am in the – my labeling her autism or anything else for that matter as bad does not take it away – camp.  It just adds one more thing that I am fighting.

My practice is to continue the fine art of balancing what is with what I wish to be. What I wish for, what I hope for, what I work so hard for is to help Emma become more independent.  To celebrate her strengths, to encourage her to sing, to join her in her joy of music, to push her to work on her spelling, reading, writing, typing, math and language.  To gently lead her away from her rigidity, to embrace her silliness, to urge her to explore and be curious.  While I am doing that, I continually remind myself that each moment is a moment that simply is.

Emma is and for that I am eternally grateful.

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

New York City Empire State Building taken from the High Line last night.