Category Archives: Gastro-Intestinal Issues

Surgery & Emma

Posted on February 27, 2012 | 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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Derailed Plans

Posted on May 31, 2011 | 1 Comment

The best of plans can often get waylaid, it seems.  In fact, whenever I have some preconceived notion of what we are going to do, where we might go with Emma, things have a tendency to get derailed.  As was the case this weekend.  We had decided to go to various water parks in the city on Sunday as temperatures rose to around 90 degrees and so many people were out of town for the weekend, making it one of our favorite weekends to stay in the city.

Sunday is a lazy day, typically.  We get up, read the paper, have a latte, talk.  Nic often plays video games or finishes up his homework, Emma plays, listens to music and dances around.  Eventually Emma and I go to her “study room”, which is actually the dining room table, where we work on her reading and writing for an hour or more.  This Sunday we did some review and Emma did well with all three sessions I introduced.  Her writing is coming along, the letters can still be somewhat erratic and over sized, but for the most part she is progressing nicely.  When we had finished I said, ”Okay, Em, let’s get ready for the water park!”

“One more minute.  Lie in bed,”  Emma said, with which she wandered off into her bedroom and shut the door.

Thinking that odd, I followed her.  ”Hey Em.  What’s going on?”  I peered into her bedroom.  Emma was curled up on her side, holding her blanket and sucking her thumb.  ”Come on!  Let’s go out.  Look, it’s beautiful outside,” I pointed out the window.

“No.  One more minute,” came Emma’s reply.

I went back out into the living room to find Richard.

“She has to go to the bathroom,” he said.  Without going into graphic detail, it became clear that Emma had not gone to the bathroom for a few days and was now in physical pain as a result.  There’s a history here that must be mentioned.  Almost exactly a year ago, I wrote a post describing in detail what we use to go through with Emma on a daily basis and how things have slowly gotten better.  If any are interested in reading it, click on “post” which will take you to that original post.  I don’t have the energy to rewrite about it all this morning.

Suffice it to say, “poop hell” was once again upon us this past Sunday.  Emma could not go, was in physical pain, and kept crying/screaming, “It hurts! Mommy!  Mommy!  Help!  Help!  It hurts!”  I spent more than two hours in the bathroom with her, trying to encourage and reassure her it would be okay, to no avail.  At one point I left the bathroom and said to Richard, “This is beyond belief.  Is this what we’re back to now?  It’s all going to begin again?”

“I just don’t see how this kind of thinking is in any way helpful,” he said.

Of course he was right.  It’s not helpful. It’s where I almost instantly go, to a place of abject fear.  This will be our lives, this will be what we must cope with each and every day for the rest of our lives.  I vacillate between terror to despair and back to terror.  None of this is helpful.  I know that.  Still, it is very difficult to move my thinking beyond the downward spiral.  Fear is like that, it just feeds upon itself.  I try to remember it’s just a feeling, it has nothing to do with anything other than the insanity in my head.  I get that.  None of it takes away from the fact that my daughter is sitting in the bathroom, crying in pain and I can do little other than sit with her.  We’ve been through this hundreds and hundreds of times.  Each and every time it feels as though we’ve entered hell.  I am sure it must feel that way to Emma even more.

Finally, Richard came into the bathroom and said, “Go out with Nic.  I’ll stay with her.  Go take a walk.”

I looked up at him.  ”Really?”

“Yeah.  Go.”

As I reached for the keys to the apartment, Nic said, “Hey Mom?”

“Yeah Nic?”

“Umm.. you might want to change before we go.”

“Yeah?  Why’s that?”

“You kind of smell like poop,” he said, looking up at me apologetically.  ”I mean, it’s pretty bad.  I think she got it on your clothes, maybe.”

“Really?” I asked looking down at my t-shirt.  ”Okay.  Wait, I’ll be right back.”  I changed my clothes and returned to the front door where Nic was waiting for me.  ”Is that better?” I asked.

“Yeah,” he said sniffing the air.

When we got outside, Nic said, “Boy it’s nice to just be outside, without all that screaming.  Just take a nice deep breath, Mom.  Isn’t it great?”

“Yeah, Nic.  It is.  Thank you for reminding me.”

“No problem, Mom,” he said as we walked toward the high line.

Later that evening, Emma felt well enough to go outside, so I took her to “Seal Park”, one of her favorites.

Emma “petting” the seal.

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

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“When Did You Know?”

Posted on May 19, 2011 | Leave a comment

People often ask this question and the answer is complicated.  Looking back it’s easy to see the signs, things we never associated with autism, but now know were clues.  As a baby she was like any other colicky baby, cheerful in the morning and early afternoon, cranky by late afternoon, screaming by evening and inconsolable by midnight.  She would scream and fuss until 2:00AM or 3:00AM when she would finally fall asleep.  After about three months she was better and began sleeping longer.  Our pediatrician told us this was typical with babies who have colic and from all that I’ve read, it is.  Except that many autistic children also have digestive problems that plague them well beyond infancy.  Some believe GI issues occur more frequently in children who are diagnosed with autism than in neuro-typical children.  Others believe there is absolutely no connection and dispute the studies showing a slight increase in GI issues with autistic children.

I can’t speak for other families, but Emma has always had GI issues something we had confirmed when we took her to Boston for a colonoscopy and endoscopy showing us her multiple ulcerations and inflammations.  When she was a toddler she was a “good eater”, basically ate anything I put in front of her.  I noted in her baby journal when she was 12 months old that she loved the mushroom barley soup I made one snowy winter day.  Talk about random, as Nic would say.  The only thing she really disliked were peas.  Hated them, spat them out and threw the bowl to the floor.  But other than strained peas, Emma had a varied and healthy diet at that time.   As she grew older and the “autism” became more pronounced, her diet became more “autistic” too.  In other words she became less willing to try new things, more rigid in her desire for sameness and eventually became the picky eater that she is today.  People who blame GI issues on picky eating, haven’t met Emma.  Her GI issues have plagued her since the first day of her life.

Emma with a variety of food on her tray including one hated pea.  This was taken before she tossed the pea to the ground.

The most telling clue, was the fact that Emma seemed so utterly indifferent to friends and other family members.  I remember when Nic was still a baby, maybe eight months old, my mother came to visit us.  We told him she was coming and he was very excited to see his Granma.  The last time he’d seen her was when he was three months old.  When she arrived, I went to greet her at our elevator, with Nic in my arms, he was so excited he began bouncing up and down, and reaching for her.  It was incredible to witness as he seemed to really know her.  Yet, when Emma saw my mother as a baby she seemed neither happy nor upset by this new person’s presence.  My mother’s arrival seemed to make little difference to her.  I remember making a mental note of this at the time and as with so many things one cannot understand, I chalked it up to her independence.

Rationalizing behaviors I couldn’t make sense of became commonplace.  It was a skill I fine tuned over the coming days, weeks and months.

I didn’t know.

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

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The Tricky Diagnosis Of Autism

Posted on March 25, 2011 | 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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GI Issues and Progress

Posted on May 24, 2010 | 5 Comments

Despite my disappointment with Emma’s last brain scan, the fact is she continues to improve.  Richard reminded me of this over the weekend.  Emma continues to make headway.  She continues to progress.  For years Emma was so constipated we were advised by various gastro intestinal specialists to give her Miralax (a laxative) every day, which resulted in explosive trips to the toilet, hours of clean up and it never did actually help Emma with her chronic constipation.

Emma’s constipation began when all the other “autistic” behaviors began to increase, at around 13 months old.  Emma’s food choices became more limited, her speech tapered off, her desire for contact diminished, she became more obsessive and rigid in her “play”.   And she became chronically constipated, often not having a bowel movement for more than two weeks.  The first few days she seemed untroubled by the need to relieve herself.  But as the days turned into weeks, we saw her distress and discomfort mount.  Typically Emma came home, having not had a bowel movement in over a week, her little legs shaking, she ran/walked, with her bottom jutted out at an odd angle, then collapsed onto the floor and bounced up and down.  A look of fear and pain crossed her face.

I tried to talk with her about it.  “It’s okay, Emmy.  Mommy will stay with you.  Just try to let it out.”

“Noooooo!” Emma screamed.  Then she grabbed my hands and pulled them around her waist.
I crouched down and held her while she sat on the toilet screaming.  It felt as though I was watching her go into labor.  Sometimes we would be there together for an hour, Emma screaming and me trying desperately to soothe her.  There were countless times when I could not believe the enormity of her poop.  How such a small child was able to evacuate such an enormous object from her rectum was beyond me.  It was agonizing.  But she would vault from the bathroom, leaving the toilet clogged, exuberant, as though the last week of hell had never occurred.

More often though, we left the bathroom defeated and exhausted.  She was not able to go and I was unable to help her other than to comfort her.  To watch your child in such physical pain, day after day is relentless, I cannot imagine what it must have been like for her.  This went on for YEARS.  I was frantic trying to find someone, anyone who might be able to help her.  After going to half a dozen medical doctors specializing in GI issues I began to look for alternative therapies.  I took her to a cranial-sacral doctor, a homeopath where we did a homeopathic chelating process, trying to rid her body of heavy metals.  We had stool analysis, urine analysis, blood drawn, allergy tests done, special gluten free, casein free diets were implemented and tests, tests and more tests.  It was because of her constipation that I started taking her to Master Ho, a Qigong master who I heard about through another parent of an autistic boy.  She swore Master Ho had been the catalyst in helping her son.  Her son was now at a school for learning disabilities, communicated well and was miles ahead of Emma.   Hundreds of thousands of dollars later,  (our insurance company would not cover any of these therapies as they were deemed, elective and alternative) Emma still had chronic constipation.

“It doesn’t hurt! It doesn’t hurt,” she screamed as her leg shook up and down, kicking me in the chest over and over again as I knelt in front of her where she was seated on the toilet.  I sat with her in the bathroom like this every evening.  It was our routine, doing whatever I could think of to ease her pain.  I sang to her, tried to do deep breathing exercises, massaged her stomach rotating my hands against her stomach in a clockwise manner as instructed by one of the many practitioners I took her to, encouraged her, but I could not remove her pain and fear.

One does not need a medical degree to deduce that this is not normal or healthy.  We took Emma to a Pediatric Gastroenterologist, Dr. Timothy Buie at MassGeneral Children’s Hospital and had an endoscopy and colonoscopy done when she was four.  Dr. Buie is brilliant and I am filled with gratitude and admiration to him for his ceaseless work in the field of GI issues in autistic children.  The test results confirmed our suspicions, her gut and intestines were a mess, she had inflammations, scaring, ulcerations and yet the remedy remained illusive.   Miralax was again prescribed with talk of possible surgery down the road.

I spoke with one more autism specialist who had been a Pediatric Emergency Room doctor before choosing to focus his work on autism.  He came to our apartment and looked at Emma who lay on the couch whimpering.

“Can you help her?” I asked.

“What are you holding on to?” he asked.

I chuckled, thinking he was making a joke about how it’s always the mother’s fault and then he said, “Sometimes the mother unknowingly causes or exacerbates her child’s problems.”  He looked at me with concern and sadness.

“What am I holding onto?” I repeated, incredulous.

“Just think about it,” he said.  “And in the meantime we can try a few other things.”

He went on to list a number of “treatments” such as Epsom salt baths, prune juice and the like.  Things we had long ago given up on.  I ushered him to the door, thanking him for his time and went back to Emma where she had not moved on the couch.

It was at this point I decided I was not going to continue giving Emma the Miralax.  We had been trying it for almost a year with no improvement.  The only other option was for us to give her an enema.  Something she did not like, but tolerated.  Those first few days I gave her an entire children’s enema.  She immediately pooped.  Each day I gave her a smaller amount, but she continued to have success.  By the end of the second week of our new regime, Emma has using a quarter of the bottle and doing it herself.  By the end of a month she was putting the bottle nozzle near her bottom and was able to go.  After several months Emma was able to have a bowel movement on her own with no interventions.  I remember those first few months, being amazed that this method was working.  Over the last few years, we have had a few set backs, times when she wasn’t able to go and I had to get out the enema bottle, much to her dislike.  But those times are infrequent.

Richard reminded me of the bathroom hell we were in for so many years and how over time she has gotten better.  It is but one example of how Emma continues to progress, slowly.

When I am really sad, Richard will say, “remember poop hell?”  And I do.  During that period I could not imagine a time when it would not be a constant worry, a constant horror awaiting me when I came home from work.

Emma continues to progress.  Emma continues to improve.

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Mother’s Day

Posted on May 7, 2010 | Leave a comment

Every year when Mother’s Day rolls around I think about buying a trophy for Ariane. But if you’ve ever seen the kind of “World’s Best Mom” statuettes they sell in gift shops, you’ll understand how easy it becomes to resist that impulse. To do full justice in honoring her ceaseless sacrifices, her boundless commitment, and her indomitable courage in the face of repeated heartbreak, I’d have to commission a giant gold statue of her in full Viking Goddess mode, hair blowing in the wind, fist outstretched in an upward and onward call to arms as she stands atop a mountain of diapers, empty vanilla milk cartons and pancake batter, Emma perched on her shoulder with her thumb in her mouth, her other hand clutching her blanket Cokie as it flutters behind them like a triumphant flag.

Maybe next year. God knows she deserves it.

It’s hard being a mom. It’s hard being a mom for a normally developing child. Harder still raising two normally developing children, which is what we both thought we were doing in Emma’s first year of life. She logged in countless hours in countless playgrounds, bookstores, zoos and museums – with more than a gazillion trips to the Museum of Natural History alone — which Emma still calls the Snakebite Museum because she obsessively goes up to the third floor on each visit to see the diorama of a boy laying on the ground that’s been bitten by a snake.

And it’s hard…really, really hard…to be the mom of an autistic child. It’s hard being the dad of an autistic child too, but not as hard as it is for Ariane. For one thing, Emma can only bond physically with one person in the world, and that’s mommy. She might sit next to me, or lay in bed next to me, but we can’t cuddle. She likes to stroke my arm and she really likes to slap it. But I cannot hug her for more than a few seconds, I cannot hold her in my arms, I cannot sit with her in my lap in the rocking chair, not for long anyway.

She is not daddy’s little girl. She is mommy’s little girl. And along with the joys of that affection comes a world of responsibilities that are extremely difficult to bear when they rest on one person’s shoulders. Only mommy can comfort Emma when she stubs her toe, or gets a cut. Only mommy can hold her and say, “It’s okay.” I cannot count how many times I’ve run to Emma’s assistance when I’ve heard her screaming, only to have her run right past me and into mommy’s arms. And when Ariane is out of the house and she injures herself, there isn’t much I can do but try and calm her while I get a bandaid.

This next part is difficult to talk about, but I think it needs to be said in order to fully appreciate what this has been like for Ariane. Emma has only been able to poop in the toilet by herself for the last year. She has had chronic constipation we have tried everything to relieve for as long as I can remember. Ariane, being the only one who could really hold her, had to hold her on the potty while Emma screamed in agony, trying to relieve herself. This could go on for more than an hour. Every day. For years. Think about it. Now add to this the fact that Emma screams louder than a jet plane on takeoff. Nuff said.

Mothers of autistic children have to cope with another burden that never seems to fully go away, not that I’ve seen anyway. Guilt. Ariane is not alone in this respect, every mother of an autistic child that I’ve ever spoken to about this has said pretty much the same things: “I shouldn’t have eaten so much fish when I was pregnant. Or exercised. Or done those leg lifts the midwife told me to do because they said she was breached – and she wasn’t. I shouldn’t have gone down to the World Trade Center after they blew it up and all that smoke was in the air. I was too old to have another child. That’s what did it. That’s what made her this way.”

I’ve never heard the father of an autistic child wring his hands over his role in ‘causing’ their child’s autism, even though some studies have said that one possible factor in the disease is the age of the father, not the mother. But the mother bears the child and that seems to lead to countless recriminations and self-blame that doesn’t even end after the child is born. “I shouldn’t have given her that MMR vaccine. I shouldn’t have given her any vaccines.” And so on.

I once said to Ariane, “If you were talking to another mom with an autistic child, would you blame her? Would you tell her it was all her fault?”

Of course not. But I wonder how much these thoughts have faded even after all this time.

As soon as we got the diagnosis, Ariane must have read every book on the subject. While I consider myself to be a pretty good dad, equally concerned and committed to healing our daughter, I have still never read a single book on the topic, not cover to cover. Maybe I’m just being a guy, but my initial response was to Google everything I could discover about possible causes and treatments in the most concise descriptions possible. I couldn’t take the pain of all those details, of all those suffering voices. “Bottom line it for me.”

Ariane tried every possible treatment she had heard about on the internet – from other mothers, of course. She has documented many of these efforts on these pages. For example, she mentioned here that she once baked a casein-free/gluten-free cake for Emma’s birthday that took her hours and hours to make. No flour, no yeast, no dairy, no sugar. I couldn’t believe how good it tasted. “What’s in here, fairy dust?” I asked, reaching for a second slice.

Emma never took a single bite of it. That trophy I was talking about should have been awarded for this feat alone. I might have to commission one after all.

Happy Mother’s Day Ariane. I love you. Nic loves you. Emma loves you.

You are amazing.

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Those Early Days (Continued)

Posted on May 3, 2010 | Leave a comment

“Sounds like classic colic,” the pediatrician said, when I brought Emma in for her check up when she was a few weeks old.

I had just finished describing how Emma didn’t fall asleep until 2:00AM.  How at around 4:00PM she became increasingly irritable, scrunching her face up at some internal horror we could not see.  Her discomfort progressed by the hour, nothing we did alleviated it.  By midnight she was screaming and somewhere around 1:00AM, just as Richard and I thought we were losing all semblance of sanity, whatever plagued her abated.  Between 2:00AM and 3:00AM she felt better or was so exhausted she was able to finally fall sleep.

The pediatrician nodded her head, patiently listening.  “She’ll grow out of it,” she said.

“Is this normal?” I asked.

“It’s not uncommon,” the pediatrician assured me.  “She’ll grow out of it,” she repeated.

“But when?” I asked.

“Usually after about three months,” She said.  “Hang in there, it won’t go on forever.”

I reported all of this to Richard when I returned home.

“I don’t know how much more I can take,” He said.

I nodded.

In the morning Richard needed to get up for work, Nic was waking up at 6:00AM wanting breakfast, and for the first time I really understood why sleep deprivation is used as a form of torture.  I remember being forgetful, losing things, I couldn’t remember what month it was, much less what day it was.  I forgot to bring wipes and snacks for Nic to the playground one day and sat on one of the wooden benches in the playground and wept.  Our building shut the water off for a few hours for maintenance and it felt as though I had been told the building was condemned and we needed to evacuate.

“I would give up state secrets within hours,” I said to Richard one evening in describing how tired I felt.

“Seriously?!” he asked laughing.  “I don’t think you’re a candidate for state secrets to begin with.”

Then one evening after about three months, Richard and I were having dinner.  He looked at me and said, “One more night of this and I’ll have to check into a hotel.”

Emma fell asleep at 8:30PM and slept through to the next morning.

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The Early Days

Posted on April 10, 2010 | 4 Comments

Emma was not a beautiful baby.  She had “skid marks” an unfortunate term coined by one of the mid-wives, meaning her face was streaked red from passing through the birth canal.  She had baby acne.  Richard lovingly referred to her as Edward G. Robinson because her nose looked as though it had taken a hard right hook and she had a perpetual frown.  “You should have seen the other guy,” Richard joked.  “Uh, yeah.. that would be me,” I replied.

With each day, Emma slowly transformed from a disgruntled looking infant to an adorable baby and then into a beautiful little girl.  Her skin cleared up, the mottled coloring dissipated; her nose went from an ill-formed pancake to delicate and defined.  Her blue eyes developed a mischievous twinkle and her wrinkly body began to fill out.  It was incredible to witness.  Richard use to stare at her lying in her bassinet, hands folded across her chest, and claim he could see her skull change shape as though he were watching time-lapse photography.

Those first three months of her life she had constant indigestion, seemed to be impossibly uncomfortable internally and utterly miserable.  Our tried and true methods of soothing Nic were no match for what ailed her.  Eventually she found her thumb and was able to soothe herself.  And while I was relieved something calmed her, I felt a twinge of failure that it had not been from something I was able to do or give her.

Looking back, I wish I had known about sensory integration.  I would have given her baby massages, tried stoking her body with soft fabrics, used oils, lotions, but even so I would not have been able to help her with her internal distress.

When my grandmother died, my sister’s mare gave birth a short while later.  I will never forget watching my sister sitting in the stall massaging the newborn colt with long, deep strokes.  My sister told me it helped the colt acclimate to human touch, soothed them, made them less skittish later on.

Emma reminded me of my sister’s colt.  I wish I had known.

After we learned of Emma’s diagnosis I went through a period of feeling that I should have done everything differently.

“Like what?” Richard asked.

“I wouldn’t have eaten any fish for my entire pregnancy.  I would have moved to a rural area, eaten only food that I had grown or was organic. “

In the beginning Richard would try logic, “But I’m pretty sure there are autistic children being born and living in rural areas.”

“Yes, but I would have moved to the mountains, where the air is cleaner, lived in a log cabin with no electricity, lived off the land, drunk boiled water retrieved from snow drifts and…”

“Worn a coonskin cap and carried a flintlock,” Richard interrupted.

Eventually Richard realized the futility in arguing with me, no amount of logic could dissuade me.  One day he tried a different tact.  We were getting on the subway, having left a talk on ‘Potty Training the Autistic Child’.  I met and spoke to another mother after the talk ended.  I liked her and told Richard about her and her son who just turned three.

“Do you blame her?” Richard asked.

“What?”

“Do you think she did something to cause her son’s autism?”  He said, not looking at me.

“Of course not!  Why would you ask that?”  I said, feeling a seed of indignation rising.

“Because you blame yourself, so I’m just wondering if you blame her too.”

I said nothing for a few minutes.

“Okay,” I said.

“You’ve got to stop doing that, Ariane.  You can’t keep blaming yourself.  You didn’t do this to Emma.  This isn’t your fault.”

“Okay,” I said.  “Okay.”

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Posted in Autism, Gastro-Intestinal Issues, Marriage, Parenting

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