Tag Archives: parenting an autistic child

Clothing Autism

Posted on April 29, 2011 by | Leave a comment

This morning I asked Emma, “Do you want to wear pants or a dress to school today?”

“Pretty dress,” Emma said without hesitation.

“Okay.  Which one?” I pulled two dresses out for her to choose from.

“Other one?”  Emma said-asked.  “This one?”   She pulled at her red and white print skirt she’d worn just the day before.

“No.  How about picking a different one.  You just wore that one,” I said, wondering if I should let her wear it again.  After all I wear a uniform of sorts to my studio most days – a pair of jeans and t-shirt of some kind.  Her skirt had been washed and ironed, there was no reason why she couldn’t wear it twice in one week.  Nic wears a school uniform to school everyday and I must admit it makes life easy.

When Emma was first diagnosed I became aware of how I was dressing her with painstaking care each morning.  It was as though I were trying to cloak her autism in pretty dresses, making sure her hair was neatly braided with different colored ribbons.  As she grew older I became less fastidious about her clothing, but I am still aware of my complicated feelings when I see her wearing some bizarre outfit of her own choosing.  Often when a caregiver has let her choose what she wants with no editing.  Socks worn with crocs, leggings that are too small, now resembling capris, the two inch gap of skin between pant and sock, the t-shirt in some color, ill-matched with the rest of the outfit.  I inwardly cringe and I admonish myself for being so shallow.  I just want her to fit in and when she’s dressed in such a way that only seems to advertise loudly how different she is, it breaks my heart.  Still I do my best to temper those feelings.

“You rarely get the chance to be frivolous,” a friend of mine said the other day.

“But it’s ridiculous.  I know,” I answered.

Once when I brought the subject up to my husband, Richard, he replied, “But people do respond differently to her when she’s wearing a pretty dress.”

And he’s right they do.  They tell her how pretty she looks and she smiles and twirls around.  I know it really is absurd, but I want people to be kind to her.  I want people to smile at her and they do when she’s dressed nicely.  I know how silly all of this sounds.  I know this isn’t going to help her autism.  I know I’m talking about something as idiotic as how she appears and has nothing to do with substance, but I also know that people react to her in a more complimentary way.

“Please don’t ever let her wear a velour track suit,” I begged Richard before leaving on a trip a few months ago.

“I love velour!”  Richard said.

“Well of course you do, just don’t let her wear one, okay?”

“She doesn’t own a velour track suit,” he answered, seriously.

“Yeah, but you might feel compelled to buy one while I’m gone,” I said.

“It’s going to be okay, honey.  I think I can handle this,” he said.

And of course he did handle it all beautifully while I was away, just as he always does.

“Okay.  This one,” Emma said, patting at a pretty white, turquoise and orange skirt.

“Oh that’s perfect!” I said, pulling it out of the closet.

“It’s perfect!” Emma repeated, bouncing up and down on the bed.

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

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I Believe…

Posted on April 28, 2011 by | 3 comments

Every year we have a meeting with the Board of Education aka BOE.  Yesterday morning was our scheduled meeting time, but because Richard has been ill, I went alone.  I do not look forward to these yearly meetings.  And as yesterday morning got off to a bumpy start I was doing my best to bolster myself for what I knew was going to be an emotionally  difficult time.  They always are.  It is at these yearly meetings when we go over Emma’s IEP (Individualized Education Program).  Each year the BOE sends someone from their department into Emma’s classroom to observe her for a half an hour.  From that observation, a report is written, almost always a report we read with dread.  It’s not that they are unreasonable or unfair, though sometimes Emma is unrecognizable, it’s that they are stripped down to the basics.

A sample from one of these reports:  “Emma came down from the cabinet and lay down on a rug.  At 9:07, she remained lying on the rug.  At 9:08, she went out of the classroom and came back barefooted with a plastic box.  A teacher assistant showed her two bottles of paint.  She said, “no” loudly…”  The report goes on to depict a low functioning autistic child (Emma) who is somewhat responsive to the teacher’s assistant, at times non-compliant and with almost no verbal language.

This year Emma was also assessed by a psychologist sent from the BOE.  This report was even more troubling: “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.”  The report goes on:  “Emma was able to hold a pencil somewhat awkwardly and make a scribble, or simple circular motion.  She was unable to copy simple vertical and horizontal lines, or any simple recognizable geometrical designs.”

As her mother it is difficult to read these reports.  I look at my daughter, my beautiful, funny, athletic Emma and I see her potential.  I choose to believe she is capable of so much.  I choose to believe she understands so much more than she appears to.  I choose to believe she will one day read and write.  I choose to believe one day she will communicate with us.  She will tell us what it’s like for her.   I choose to believe these things because to do otherwise is not a life I want to live.  But when I am confronted with reports such as the ones I’ve quoted from, it makes me question, even if for only a moment these choices, these so called beliefs of mine.  What if I’m wrong?  A question I always follow with – what does it matter if I’m wrong?  Because if I’m wrong, I won’t find out until I’m very old or will never know because I’ll be dead. I will always choose to believe I’m right about Emma.  I have to.  All the work we do with her every single day is because I believe in her abilities.  I believe she can do more.  I believe she is capable of so much.  When I tell her we have to do yet another reading exercise or writing exercise I am doing so because I believe she can.  When I read to her about Harriet Tubman or Helen Keller or Balto or the discovery of King Tut’s tomb,  I believe she is taking it all in.  When I ask her if I should keep reading and her answer is always – yes – I take that as confirmation of my beliefs.  I know I am making a choice.  I know my decision to believe these things are based on very little, but never-the-less I believe.

I believe in Emma.

For more on Emma’s journey through a childhood of autism and my journey in parenting an autistic child, go to:  EmmasHopeBook.com

Emma waiting for her school bus this morning

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Unlocking Emma’s Mind

Posted on April 22, 2011 by | Leave a comment

This morning Emma said, “Play musical chairs!”  Then proceeded to position several dining room chairs in the middle of the room so they had their backs to one another, fanning out in a kind of lopsided circle.  She turned on some music from her iPod and danced for a minute or two, then hit the pause button and yelled, “Freeze!”  She ran to the nearest chair and sat down, staying very still for a few seconds before leaping up and turning the music back on.

When I joined in she said, “Mommy dancing!”  Then she began to laugh uncontrollably.

After about twenty minutes I sat down and watched her continue to play by herself.  She looked up at me and smiled, then covered her eyes with one hand.  “Hi Mommy!”  she said, peeking out between two fingers.

“Hi Em.”

“Playing Freeze with Mommy.”

“Yeah do you want me to keep playing?”

“No.  Nicky hurt his toe in Aspen.”

This is typical of Emma to make a sudden leap in thinking or maybe we all do this, but she just verbalizes her train of thought.  Maybe he hurt his toe while they were listening to music, I can’t remember any more.  Maybe it was simply an errant thought.

A specialist said, while being interviewed about autism, that they thought autism was the disregulation of neural pathways.  They went on to speak of the idea that people with autism have trouble communicating and putting into words their thinking.  But that it was the communicating that is troublesome, not the thinking.  I have no way of knowing what Emma is thinking, obviously, unless she tells me and even then it can be difficult figuring out exactly what she is trying to tell me, but I know her mind is very busy.  I can see her processing information, I can watch her and see that she is thinking, I just don’t know about what.

When I work with her on her reading and writing I can see how she is very clearly understanding the words she sees.  She is learning to read.  Yet if I ask her to read the sentence – Here is a truck – it causes her tremendous difficulty.  I know she can read it because she knows each word when shown by itself.  Yet put it into a sentence and it confuses her.  It’s similar to when she works at the computer.  She seems to have an easier time typing words and identifying words when she’s on the computer than if she’s asked to write those same words by hand.

When I read about autistic children who suddenly begin to type out full comprehensive sentences, it seems like magic.  Usually these same children have displayed nothing to indicate to their caregivers that they can read, let alone spell.  Yet there are numerous cases of children communicating through typing who have never been able to communicate before.

The other night I dreamt about Emma.  In my dream she was talking to me, just as any neuro-typical nine-year old child would.  She was telling me “secrets” and in the dream I thought how profound this information was.  She was telling me about what it was like for her and answering all my questions.  When I woke up the next morning I tried to remember what she’d told me, but I couldn’t.  I kept thinking if I just relaxed I would remember, as though she really had told me, as though it hadn’t been a dream, as though for a brief moment I had the answers, the key to unlocking her mind.

Every time I work with her on the computer I have a tiny hope that she’ll suddenly write something on her own, something that we aren’t working on.  Like magic, she’ll write a sentence that let’s me in on her thinking and her mind.  And each session when she doesn’t do that, I think – it’s okay, maybe next time.

For now, I have a game of musical chairs waiting for me.

For more on Emma’s journey through a childhood of autism and to hear her sing go to:  EmmasHopeBook

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The Suggestions Autism Inspires

Posted on April 6, 2011 by | Leave a comment

I have been trying to find a probiotic that Emma might be willing to take with little success.  Yesterday I asked the man in a health food store for help and when I mentioned it was for my autistic daughter he asked the usual questions regarding her diet (limited), her activity level (high), etc.  I am usually reluctant to get involved in such a conversation as I am almost always inundated with well meaning advice.  Advice that has little, if anything, to do with my original question and advice I have received by literally hundreds of people in the last seven years.  Yesterday proved no different.

“You need to train her to eat healthy foods,” he began.

I smiled in response while remembering the last time we attempted to get Emma to take something she didn’t want to take.  It took three adults holding her down, while I tried to force a spoonful of antibiotics in her mouth.  She writhed around and blew the contents of the spoon out of her mouth with such force it hit me in the face.  Richard stood up at that point and said, “We can’t do this.  There has to be another way.”

My face dripping with Emma’s saliva mixed with the pink sticky antibiotics we had forced into her mouth, I was inclined to agree.

“She should eat only raw fruits and vegetables,” the man in the health food store continued, warming to his subject.

I stared at him and said, “I really am just interested in finding a chewable probiotic that she might actually try.”

Undeterred, the man continued and then said, “You should call this man, he can help your daughter.”

“Is he a doctor?” I asked.

“Oh no!” the man said, looking horrified.

“Is he a specialist in autism?”

“No, no, nothing like that,” the man said, scribbling down a name and phone number.

“So who is this person?” I asked.

“He has vitamins, special vitamins,” he answered.

I looked around the store.  A store well stocked with vitamins of every kind and said, “Look, I am sure this person is a lovely human being, but I don’t need vitamins at the moment.  Thank you anyway.”

“No, no, this man is different,” he said as I turned to leave.

“They always are,” I answered.

Over the years I have had conversations with so many people I can no longer count, exactly like this one.  During those first few years I even took Emma to a number of people I had heard about from others, who claimed to have some inexplicable cure, vitamins, tinctures of homeopathic remedies, healers, people who I am sure believed that what they were doing could and would make a difference, and perhaps they did for someone else’s child.  But whatever it was never made a difference for Emma.

I have had people contact me insisting their child, nephew, grandchild was miraculously healed, began speaking in full sentences etc. as the direct result of whatever magical potion they were telling me about.  It’s not that I think all these people are making up success stories, they are far too passionate for that, it’s that I have heard so many of these stories, literally hundreds of them and they are always of something different.  Each remedy is an anecdotal story of a child the person knows, and yet I have never been told about the same remedy working for anyone else.

One of the things I have learned over the years is that one can spend every last dime one has on these potions, healers, etc. and there will never be an end to it.  One can spend every moment running from one referral to the next, one remedy to the next and there will always be a new one around the next corner.  At a certain point, one cannot continue to investigate every single suggestion given, it simply is not possible from a financial standpoint or time-wise, but most importantly – one must ask the question – what is this doing to my child?

I have no doubt the man in the health food store genuinely thought he was doing me a tremendous favor by telling me about his friend.  What he couldn’t know was that I have hundreds and hundreds of scraps of paper with names and phone numbers scribbled down of people just like his “vitamin man”.

After I left the health food store I was able to locate a chewable probiotic at Whole Foods that miraculously, Emma was willing to chew.  I will see if it makes a difference, though I am not holding my breath.

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

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The Tricky Diagnosis Of Autism

Posted on March 25, 2011 by | 2 comments

When Emma was first given a diagnosis, we were told she might not be autistic, time would only tell, but that for the time being they were giving her a diagnosis of PDD-NOS, which is the acronym for Pervasive Developmental Disorder Not Otherwise Specified.  PDD is often thought of as a milder form of autism or as was explained to us, the diagnosis given when the child has enough “autistic-like” behaviors to require intervention, but doesn’t display all of them.  As time went on however, Emma’s “milder” version of autism grew into the more solidly defined autism.

I remember speaking with her neurologists saying we were lucky in that Emma was mildly autistic and one of them said, “Well no, she isn’t mild.”

“Really?  Where do you think she falls on the spectrum?” I asked, genuinely surprised.

“She’s moderate,” one of them said, kindly.

I was so stunned, I couldn’t speak.  We had been assured by so many “professionals” in the field that her autism was mild, it never occurred to me they might be wrong in their assessment.  Even when we kept trying the various behavioral therapies recommended with little progress, I continued to cling to the “mildly autistic” assessment.  I kept thinking it must be something we were doing wrong.  We weren’t giving her enough applied behavioral analysis, despite the 40 hours a week we had implemented.  I thought of it as a kind of  toddler boot camp, unfortunate, yet necessary.  When we then trained with the brilliant Stanley Greenspan, I assumed we were not doing his floortime “right”.  In essence I blamed our ability to adequately implement the various therapies as the reason she wasn’t progressing more quickly.

When we began having regular QEEGs done, which showed us images of her brain compared to her neurologically typical peers I was given the visual explanation I needed to understand what we were up against.  There was no denying the vast difference between her lit up non-symmetrical brain and the brains of same age children not on the spectrum.  It was only then that I began to fully take in just how much we do not know about autism.  Years later, I now question anyone who claims definitively to know what will or will not help, what course they are sure we should take.  It is the professionals who have the humility to admit all they do not know, whom I find myself interested in speaking with.

When Emma was about four we took her up to Boston to visit a well known and extremely well thought of gastro-intestinal doctor, Dr. Timothy Buie.  I asked a series of questions and he never once answered with the sort of assurance I had become used to.  Most of my questions he said he couldn’t answer because he didn’t know for certain.  We left Boston with the tests showing Emma’s numerous ulcerations and inflammation to her GI tract.  But with no solid answers as to why or how this had happened to such a young child.  I continue to have tremendous respect for that doctor who continues to devote his life to finding answers, but has the humility to acknowledge how much we still do not know and understand when it comes to autism.

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Skill Set

Posted on March 8, 2011 by | Leave a comment

People talk about their particular “skill set” for this or that job.  My “skill set” does not include great coping skills.  Just because I have a daughter who happens to be autistic doesn’t mean I innately know how to manage every situation, which comes with a child with special needs.

When Nic was first born, I opted to go the natural route and though the labor was seemingly endless, (38 hours) once he appeared, we were back home by that evening.  The first night was utter hell.  Every time his breathing changed I was up like a shot, staring intently at him wondering whether his congested breathing was normal.  I remember thinking this was why mothers stayed that first night in the hospital.
“I wish he came with a manual,” I said to Richard.

But he didn’t.  As all parents know, our children don’t come with a “Coping Skills for Idiot Parents” guide book as much as we wish they did.

Emma was born, again natural child birth and this time in a free standing birthing center.   She was born at 4:30PM and we were home by 9:00PM.  I felt something akin to terror because in addition to being a completely different infant than Nic, she seemed so uncomfortable, much more than Nic had, who was my only frame of reference.   I remember thinking that I had the whole mothering thing down, having honed my skills on Nic.  And then there was Emma, proving me wrong from the first breath she took, which came out as more of a disgruntled moan than a breath.

“What’s wrong with her?” I asked the midwife.  Her displeasure from that first second the air touched her skin all too apparent.  I knew right away I had no idea what I was doing.  I was in over my head.

I continue to feel that way now and Emma just turned nine years old in January.  She is growing like a weed on Miracle Gro, with no sign of slowing down.  You’d think I’d have this whole mothering-a-special-needs-child-thing down by now.  It turns out I’m a slow learner.  I do not understand what she says a great deal of the time.  I don’t have some sort of internal interpreting device where she says something incomprehensible and I’m able to translate.

“What did she say?” people often ask me.

I haven’t a clue.

“Why did she do that?” people will question.

Don’t ask me.

Every now and again I have an idea, but I also know there’s a 50% chance I’ve got it wrong.

When Emma begins screaming that her ears are popping and she needs help, there is a second where I wonder what I can possibly do that will make a difference.  I go through the predictable routine, try to get her to yawn, offer her a piece of chewing gum, try to speak calmly to her and not give in to my desire to yell back.

When both the children were toddlers I was pushing them in their double stroller, (the Hummer of all child transportation devices ever invented) when we passed a woman screaming at her child.

“You are behaving like a brat!” she yelled at the little boy who couldn’t have been older than five.  “A brat!” she continued.  “You cannot get what you want by screaming!” she screamed.

It was one of those moments when you put your head down and just keep walking.  Unless you have it in you to say something kind and loving to this screaming stranger, do not stop, do not entertain the idea you’re input will be taken as anything other than criticism or condescending, just keep walking.   But it exemplified what almost all of us have done at least a few times in our lives.  The hypocrisy we all catch ourselves in if we look deep enough.

Coping?  It’s not in my skill set.  But I keep showing up and maybe that’s a skill in and of itself.

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Flying with Emma

Posted on February 18, 2011 by | Leave a comment

Emma is a joy to travel with.  Unlike most children, she sits quietly in her seat and is content to listen to music, look out the window, watch a video or look at books.  But there are certain misunderstandings, which inevitably arise when traveling with Emma as well.

Yesterday as we boarded the airplane leaving New York City to Denver, a nice woman behind us asked if Emma was 9.  I told her she was and she replied that her daughter was 9 too and she understood how hard it could be to travel with a nine-year old.  I said, “Oh, is your daughter autistic?”

The woman looked at me in surprise and said, “No.  She’s nine.”

It was one of those peculiar conversations where you realize you’ve misunderstood the intent of the other person.  I immediately thought, because Emma kept getting out of the line leading to the aircraft, that she knew Emma was autistic.  But it turns out she had no idea and was simply commiserating with someone who also had a nine-year old child and was flying with her.  My first impulse was to say, “Oh no.  Emma is great to travel with.  She’s not like that at all!”  But I decided it was best to keep walking and find our seats.

Later during the flight when Emma needed to go to the bathroom, the flight attendant said, “Poor thing, she’s still asleep,”  as Emma kept trying to push open the door to the bathroom which was occupied, despite my repeated attempts to stop her.  Again I just smiled.

Later on the flight from Denver to Aspen, (we were one of the lucky few who actually made it into Aspen yesterday!) the flight attendant leaned over to Emma and said, “Do you have your seat belt on?”

“Umhmm,” Emma said, curled up on the seat by the window.

“Really?” he said.  Where?  Do you have it around your chest, your knees?  I don’t see a seat belt.”

Emma just smiled at him and nodded her head.

“Emmy, put your seat belt on,” I interjected as I could hear the growing irritation in the harried flight attendant’s voice.  She immediately did so.

“Oh!  So you weren’t telling me the truth, were you?” the flight attendant said.

I put my hand gently on his elbow and said, “She’s autistic and didn’t understand you.”

“Oh dear.  I’m so sorry,” he replied before quickly moving along the aisle.

And so it goes.  This sort of thing happens constantly with Emma.  People assume she’s fine, she looks fine after all, and respond accordingly.  There’s always a moment when either I say something or they begin to realize they are dealing with someone who is a bit different than what they thought.  It’s a surreal moment, when the other person is caught off guard, before they’ve had time to make an adjustment.  Usually people are incredibly kind, very occasionally we meet someone who isn’t.   I don’t have any one method of responding.  Often I say nothing.  I mean what’s the point really?

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Routine

Posted on February 16, 2011 by | Leave a comment

Emma is not alone in liking her routines.  She is most comfortable when she knows she will do something she enjoys or is use to.  What separates Emma from the rest of us is that instead of being able to adjust when her routine is disrupted, she is thrown completely off-balance to a degree that often catches even us by surprise.

Last night Emma went through her nighttime routine of getting ready for bed.  After her teeth had been brushed she came to find me in the back where I was reading.

“Just five minutes,” she said as she got into our bed.  “Just five minutes with Mommy.”

“Hey Em.   Okay five minutes, then you’ll go back to your bed,” I agreed.

About ten minutes later I looked up from my book and realized Emma had fallen asleep.  There was a moment when I wondered if I should just let her sleep and try to carry her into her bed later, but she’s gotten so big, short of carting her out on a gurney, this is no longer an option.

“Hey Emmy,” I whispered as I put my arm around her.  “You have to go to sleep in your own bed.”

She resisted me.  “Stay here with Mommy,” she muttered.

“Come on.  I’ll take you back to your bed.”  I held out my hand and waited for her to get up.

“Go with Mommy into the other room,” she said.

Ever compliant, she allowed me to lead her back to her own bedroom where she got into bed.  “Mommy sing a song?”

Having sung her a lullaby I went back to my book, relishing in the fact Emma was back asleep in her own bed without a fuss, something I am still consistently surprised by.

Half an hour later, cries from Emma’s room could be heard.  She tearfully offered us her flashlight, a gift from my brother, which glows in the dark.  “It’s broken,” she sobbed.

We tried replacing its batteries with no success and finally placated her with promises of repairing it in the morning.

Another half hour went by and then there Emma was, like a spectre, at the foot of our bed.  “Mommy come!” she cried.

This went on for about an hour.  Emma would tearfully return to her bed, one of us would sit with her for a few minutes, tuck her in, say good night and leave, only to have her reappear ten or fifteen minutes later, crying about something else.  It’s like watching a pin ball ricocheting around, from one thing to the next until eventually Richard took her back to her bed and for whatever reason, this time she was able to go back to sleep.

Emma is sensitive to the slightest variation in her routine.  It is something we know about her and do our best to accommodate.  When she was little we use to mix things up on purpose.  We tried to avoid routines with the mistaken idea that if she were not allowed to have any routines, she would learn to adapt to change more easily.  But this proved wrong and impossible.  Emma would go along with things as chaotic as they might be, but the instant we did something, anything more than a few times, she would become fixated on doing the same, over and over again.  In addition the children’s school, our own work requirements, all need a schedule, as do regular bedtime, meals etc.

There are a number of studies being done on the link between autism and obsessive-compulsive disorder.  I don’t know if Emma has a comorbid diagnosis of OCD, but until one witnesses such behavior, it is almost impossible to explain the panic, the sheer terror, disruption causes them.

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Monster Bugs

Posted on February 15, 2011 by | Leave a comment

Last night I pulled out the dozen or more non-fiction children’s books I have for Emma.
“Pick two,” I instructed, fanning them out for Emma to see.

Emma pointed to Monster Bugs & Escape North – The Story of Harriet Tubman, bypassing Volcanos, Whales, Big Cats, Thomas Jefferson and George Washington’s Dog. “This one?” Emma said.

“Okay.  Monster Bugs and Harriet Tubman, it is!”

“Say it with your mouth closed,” Emma said, putting her hand over my mouth.  “Monster Bugs!” she demonstrated with her lips together so that it sounded more like “mummerbum.”

I began reading in an animated voice, lips sealed as Emma shrieked with laughter.  “Hab you eber looked ab a bug up clobe?” I read.  Every time I opened my mouth to annunciate the words she would cover my mouth with her hand.  “Emmy stop!” I said, twisting away from her hand.

“Mouth closed!” Emma laughed.

“Okay, one more sentence with my mouth closed and then we’re going to read it the other way,” I told her.

Nic, who came to see what all the laughter was about, sat next to me on Emma’s bed.  “Don’t worry Mom.  I’ll make sure she doesn’t cover your mouth again,” he reassured me.

“You might see horns…” I began, as Emma clapped her hand firmly over my mouth.

“Emma!  Let Mommy read the story,” Nic said, laughing.

“But the beetle fires boiling-hot gas from its rear end,” I read.

“I love this book,” Nic said, peering over my shoulder at the picture of the beetle shooting gas into an unsuspecting mouses mouth and nose.  “That is so awesome!”

“Mummerbum!”  Emma laughed.

As we continued to make our way through the book, with Nic asking for clarification on specific bugs, particularly the more gruesome and scary ones and Emma repeating the words with her mouth closed, I thought of how when I was pregnant with Emma I looked forward to reading stories to both the children.  When Emma was little she didn’t have any patience for books and only was interested in them if we allowed her to hold them so she could flip through their pages.  The book and its pages interested her, the act of flipping the pages methodically without really looking at the pictures seemed far more interesting to her than the story within the book.  But in the last few years her interest in books has increased and now she seems to genuinely want us to read to her, even requesting specific books while rejecting others.  It was wonderful to see her looking at the illustrations, pointing to the hairy tarantula while saying, “Maranmula!” with her mouth closed.

Nic was impressed with the Stink bug and the Praying Mantis who cleans its face like a cat after consuming a baby bird.

When I finished reading Monster Bugs, we moved onto Escape North!  A quarter of the way through, Nic nudged me and pointed to Emma.

I looked over to see she had fallen asleep.

“We’ll finish this one tomorrow night,” I whispered to Nic.

“No!  Read me the rest,” he said.

“Okay.  I’ll read it again to Emma tomorrow.”

“Good idea, Mom,” Nic said snuggling down next to me.

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Pain

Posted on February 14, 2011 by | 1 comment

When Emma was a toddler, about a year old, maybe two years old, she had a little scratch from the tag on the back of her shirt.  It seemed so insignificant, hardly worth noticing, except that Emma screamed as though her entire body had been scalded.  I remember at the time thinking it strange, that her response seemed too extreme for such a tiny scratch.

There were other incidences which also caught my attention for the very opposite reason.  She would stub her toe or get scratched by a cat or have a huge knot in her hair, none of which would cause her to even gasp.  When she grew older I was terrified of the day when she would start to lose her baby teeth, convinced this would set off such cries of pain, with no remedy other than to wait until the tooth came out of it’s own accord.  However this was not to be the case.  In fact, Emma grabbed hold of the loose tooth and simply yanked it out of her mouth, dropping it to the ground, as though it were nothing more than an irritant, like a pebble in ones shoe.  Evidently her school bus is littered with her baby teeth as she would board the bus in the morning with a loose tooth only to come home and announce, “Threw it away,” when asked what happened to her tooth.

“Where?  Where did your tooth go?” we would ask.

“On the bus,” Emma replied matter-of-factly more than once.

About six months ago Emma was reported to have said to Joe, “Joe!  Pull it out!” and then opened her mouth so that he could remove the offending tooth, which he didn’t, so she did.  Joe was able to intercept the tooth before she was able to toss it in the gutter.

I don’t think we have more than two or maybe three of Emma’s baby teeth, despite the fact she’s lost at least eight or more by this point.  We tried to tell her about the tooth fairy, but she was utterly uninterested and wandered away before we had finished.  The idea a “fairy” would come to gather up her loose teeth, leaving behind money, was not a concept Emma had any use for.

Last Friday Joe called to tell me Emma was whimpering and saying her ear hurt.  I immediately called the pediatrician then looked at Emma’s throat for signs of strep.  Sure enough there was the tell tale white spot on one side of her throat.

“No say AHHH!” Emma said, pointing at her throat.

“Well, let’s wait and see what the doctor says, Em.  Does your throat hurt?”

“Yes.  Ears.”  Emma replied.

“Your throat and your ears hurt?” I asked.

“Yes.”

I remembered the last time I’d taken her to the pediatrician because her ears were bothering her, only to be informed that in fact she had strep, again.

Upon our arrival I proudly stated that I was sure it was strep and went on at length about how I couldn’t believe Emma had somehow contracted strep making this the third time since the school year began.  The pediatrician smiled and nodded her head as she examined Emma who kept insisting “No AHHHH!”  Meaning she didn’t want to have the doctor swab the back of her throat.

“Just ears,” Emma said repeatedly.

The instant the pediatrician looked in Emma’s left ear she looked up and said, “Raging ear infection.”

“What?” I asked, thinking I’d misheard, so convinced was I that Emma had strep.  “But what about that white dot on her throat?”

The pediatrician shrugged.  “Could be food, not sure, but her ear is bright red.  An ear this red should be extremely painful.”  She said looking at Emma.  “I’m surprised she isn’t complaining more.  It’s a really bad infection.”

I watched as Emma played cheerfully with the doctor’s stethoscope.  Observing her, one would never know her little body was host to a horrific ear infection.

“So that’s it?” I asked, still unable to believe she didn’t have strep.

“Yup.  Antibiotics will clear it up, but give her children’s advil in the meantime, that ear has got to hurt,” the pediatrician said.

By the time I had procured the prescription and the children’s advil and returned home, Emma was running around, playing happily.

“Hey Em.  How do you feel?  Does you ear hurt?”

“Yes.” Emma said before racing off down the hall with Joe in hot pursuit.  Shrieks of laughter could be heard.

One of autisms defining features is what specialist call sensory integration issues.  They can range from hypo to hyper and are often a mixture of the two.  In Emma’s case she has both and we still cannot anticipate which one we are witnessing.

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Some thoughts

Posted on February 3, 2011 by | Leave a comment

I have school photos of our two children on my desk in my studio, both are smiling, their blonde hair, much lighter than it is now.  Emma, like her older neurotypical brother, Nic, is looking directly at the camera.  Her two front baby teeth are missing, the adult teeth yet to show themselves.  It is one of the rare photos from that age when she was just five where she is looking at the camera.  I have spent hours staring at that photograph, as though if I looked long enough, some part of her mind will reveal itself to me.

I try to apply logic or project my own emotions onto Emma in explanation of her behavior and find I am wrong time and time again.  When I look at Emma’s brain scans and see the lack of symmetry, the bright colors, which should be dark, like a strange Rorschach test gone wildly awry, I try to detect patterns.  I try to make sense of what I’m seeing, but cannot.

“Emma’s brain is not like ours,” I remind my son, Nic in times of upset.  She does not think as we do.  She is decidedly “other.”  I feel as though I am a perpetual intruder in her life.  At times welcome, just as often not.

The stem cell treatments, like the myriad treatments that came before may not help her in the end.  Or they may not help her to the degree we would like.  Emma may not progress enough to allow her to live an independent life.  But I do not want to look back on these years and feel regret.  Regret we might have done more.  So we continue to wait and watch.

And while we do so, we work on her handwriting, her receptive skills, sequencing, her enunciation, we are teaching her to use a typewriter and we read to her.  It was suggested to us that we read books written for children that are non-fiction instead of the usual array of stories available to beginning readers.  At first I was reluctant to give up the Olivia books, which she took such pleasure in, Dr. Seuss, Go Away Big Green Monster, books Emma has been looking at and heard hundreds of times and which she continues to hear at school.  But at home out came the Learning To Read series about Pompeii, The Titanic, Dolphins, Hungry Plants, then I found other books written for children on such topics as Balto and Helen Keller.   She loves all of them.  She requests them, has asked me to read some of her favorites over again.  I am amazed.  But if I think about it, it makes perfect sense.  For a child who takes things so literally, non-fiction is a perfect fit.  The stories I am reading are for her age level and she enjoys them, which fills me with hope and happiness.

Just because Emma doesn’t process things or communicate the way we neurotypicals do, doesn’t mean she’s not intelligent.  Emma is exceedingly bright.  It’s figuring out how to tap into that intelligence in a way that speaks to her, captivates her and interests her – that’s the challenge.

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“No Braid!”

Posted on January 21, 2011 by | Leave a comment

Combing through the tangled knot that was Emma’s hair this morning, she cried, “I don’t like hurt.  Ouch, use brush.”  She grabbed the brush next to her and began brushing her hair.  Only Emma’s “brushing” her own hair consists of placing the brush arbitrarily on some portion of her head and pulling down, which is fine if her hair isn’t tangled.  If her hair is tangled, as it was this morning, Emma’s attempts to brush it, only serves to make it more so.

“Okay, Em.  I’m sorry, I didn’t mean to hurt you,” I said, plying the brush from her.

“It doesn’t hurt,” Emma responded.  Which meant it did hurt.

“Here, I’ll use the brush, see?” I said, being careful to not pull on her hair.  How about I make a braid today?”

“NO!  No braid.  Ponytail!”  Emma cried grabbing the brush again.

“Okay.  How about I make pigtails?” I asked.

“Yes.  Pigtails!” Emma said.  She made her hand into a fist and put each fist on either side of her head, indicating where she wanted the pigtails.

“Perfect.  I’ll do that,” I promised.  After I put the pink frilly hair ties in place I said, “Let me see!”

Emma turned toward me and tossed her head from side to side making her hair whip around.  With a huge grin, she shouted,  “Pigtails!”

“Oh Emma you look great.  I love those pigtails.”

“You’re so pretty!” Emma said jumping up and down.

“Yes you are.  Now let’s go brush your teeth.”

When we went into the bathroom, Emma looked at her reflection in the mirror.  “Look at you!” she squealed, grinning at herself.  “You’re so cute!”

As we left to catch her school bus, Emma carefully put her hat on over her pigtails, only the pigtails were so high on her head it made her look as though she had little horns.  I smiled at her as we got into the elevator.

Emma jumped up and down and waved her arms while making a kind of whooping noise, something she does when she’s excited.

“Are you happy?” I asked, smiling at her.

“Are you happy?”  Emma repeated.   After a pause, Emma shouted, “YES!”

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Wake Up Calls

Posted on January 14, 2011 by | Leave a comment

Last night Emma came into our bedroom every few hours.  The first time was just after midnight, then again at 2:30AM or thereabout, again sometime after 3:00AM and once more, only I was so tired, I can no longer remember what time it was.  The last time she came in, standing beside the bed and looking at me, we told her she had to go back into her room and that we would come get her when it was time to wake up.  When she left, whispering, “Mommy, Mommy come into the other room,” I stayed awake waiting for her return.  Only she didn’t return.  She went back to her room and managed to fall back asleep, something I was unable to do.

So I’m tired.

And when I’m tired things can look a bit bleak.

I know this about myself.

This post is therefore about countering that exhaustion induced bleakness with a more balanced view of Emma and how far she’s come in the last year.

At this time last year, Emma was still wearing a diaper at night.  She was often awake in the middle of the night, unable to go back to sleep without one of us, usually me, lying next to her for the remainder of the night.  Or she would come into our bed, forcing Richard to sleep in her twin bed in her bedroom.  The feeling of utter exhaustion I am currently experiencing was commonplace a year ago.

In addition to the nocturnal awakenings, Emma had a habit of sucking on a strand of her hair, returning home with an encrusted lock, which I had to soak in lukewarm water before brushing out.  Emma was unable to shower by herself, brush her teeth, floss or brush her hair and needed reminders to go to the bathroom. Emma showed no interest in most toys and her language was not as complex as it is now.  Her utterances were in the three to five word category and often were difficult to understand.  Her difficulty distinguishing between pronouns such as “you”, “me”, “I”, “him” and “her” was all too apparent.  More often than not she referred to herself in the third person and often referred to others by calling them – “Emma”.

In the last few months, Emma has become enthralled with one of her baby dolls.  Each night for the past week, she comes home, bathes and washes her baby doll’s hair with shampoo, then wraps her in a towel and puts her to bed.  Her pretend play continues to be somewhat literal, in other words she doesn’t pretend to talk for her doll, she isn’t able to “name” her dolls beyond calling them things like:  doll, girl, baby, etc.  But Emma is showing an increased interest in playing with them, taking on the role of “mother” and spends longer periods doing “motherly” things with them.
This is the first year Emma has shown even a remote interest in Christmas and likewise with her birthday.  She has been talking about her birthday and the party we are giving her for over a month now.  Sadly, few children are able to come to her party, as it falls on a three-day weekend and almost everyone is busy or away.  But despite this, we are making sure she and her birthday are celebrated.

Sometimes it takes exhaustion and numerous wake up calls to remind me of just how far Emma has come.

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Emma’s Birthday

Posted on January 10, 2011 by | Leave a comment

This coming Sunday we are giving Emma a birthday party.  In years past this has been a dubious endeavor, often met with initial excitement on Emma’s part, only to end with complete indifference or worse.

When Emma turned four, we hired a musician to come to the house and play kid friendly music before eating pizza and cake.  Emma spent the entire hour and a half trying to lie inside the musician’s guitar case, while Richard and I tried, with little success, to entice her to join the party.  The other children, many of whom were also diagnosed with autism, ran around, danced, sang along with the music or sat watching and listening with their mother or caregiver.  Richard and I took turns excusing ourselves and each went separately into our bathroom where we allowed ourselves a few minutes to cry, before mustering up the strength to return to our guests, doing our best to act as though everything was fine.

It was also the year we had been called into a parent/teacher conference at her special education pre-school only to be told our daughter was a “red flag” and that she had “flat-lined” in her development.  It was a tough year.  A year Richard and I still refer to when we feel doubtful of Emma’s current progress.  That year marked a time of desperation, sadness and a general feeling of impotence on our part.   It seemed whatever therapy we tried, whatever medical interventions we took on, nothing made a difference.

This year, Emma not only told me where she wanted to have her party she also told me which of her friends she wanted to attend her party.  Before she left Aspen (where I am currently snowed in) she listed all the people she wanted to invite.  She was very specific.  When I asked about a couple of children, she said simply, “No.”  It was the same with the place.  She wanted a specific place where she can play and do gymnastics with her friends.  Afterwards we will order pizza, which Emma won’t eat, and cupcakes, which Emma will.  I expect it will be a very different kind of party than five years ago when she turned four.  Emma has come a long way in five years.

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Dozer

Posted on January 7, 2011 by | 1 comment

This is my talented nephew, Bridger’s puppy, Dozer.  This photo was taken in October.

The aptly named, Dozer, is now at least four times as big and still growing.  To my son, Nic, he is a welcome addition.  Dozer’s hair is as soft as the finest fur.  He’s full of puppy energy and best of all, loves to be with kids.  Nic is ecstatic and cannot wait to see him again.

For Emma, however, Dozer is a furball nightmare come true.  He’s bouncy and teething so he nips and grabs hold of anything that moves.  His actions are erratic – he seemingly comes out of nowhere and jumps to lick, usually the face.  That he is adorable is completely lost on Emma.  All she sees is black menacing fur in the shape of a not so small bear, rapid movement, wet tongue, drool and sharp teeth.  To say she is terrified of him, would be a vast understatement.

When Emma went up to the barn one day while out in Aspen for the holidays, Dozer came out to play.  Emma was terrified as Dozer bounded toward her at a rapid clip.

“Pick me up!” she screamed.

Emma now weighs over seventy pounds, so picking up a writhing, screaming, terrified body is not an easy task.

“Pick me up!” she screamed again, pulling at my arms.

I tried to shield her with my body, but Dozer was so fast, he was able to bounce around me, giving Emma an enormous, wet “kiss”.  Only to Emma it wasn’t a “kiss”, it was nothing short of an assault.

“Mommy!  PICK ME UP!” Emma shrieked, her fear palpable.

Eventually we managed to get to the barn and locked Dozer out where we could hear him pacing up and down, trying to find an alternate means of entry.  Add a creepy sound track and you have nothing short of a scene from a horror movie.

After twenty minutes or so, we peered out the door to see if an escape was possible.  There Dozer was, lying in front of the only door, his enormous body draped across the exit, making any attempts to leave impossible.

Emma began to fret.

“It’s okay Em.  I’ll pick you up,” I reassured her.

“No Dozer.  Dozer go back to Bridger’s house,” Emma said desperately.

“It’ll be okay, I’ll carry you down the road and Dozer will go home,” I said.

Except when I picked Emma up, she is so tall now, her feet dangled not far from the ground, an easy grab for Dozer, who comes up to my hips.  Emma screamed and tried to “climb” up my body.  The whole thing would have been comical had I not been trying to hold onto her, while pushing Dozer away, somewhat like trying to move a stalled car, as we made our way down the ranch road.  “It’s okay, Em.  He’s not going to hurt you.  He wants to play, that’s all,” I told her.

Any time I saw Dozer’s attention stray, I would take a moment to rest by putting Emma down, where upon she would immediately scream, attracting Dozer’s attention again.  Back he would race to see what he was missing.  It was a laborious process and poor Emma by the end of the trip was repeating over and over again the same ineffective words – “Dozer! NO!  You have to go back to Bridger’s house!  You have to stay inside!”

Only Dozer had no intention of returning to an empty house, he was having far too much fun with this odd child and her fumbling mother.

Later, in the safety of Granma’s house, Emma stared out the window and said, “No you cannot go up to Bridger’s house.  Dozer has to stay inside. It’s okay.  It’s okay.  Dozer has to go home.”

Now Emma is safely back in New York, home to millions of dogs, but very few Newfoundlands, so perhaps she feels safe, finally.

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