Tag Archives: GI issues

Muddying the Water: Alleviating Pain ≠ “Recovery”

A few months ago I wrote about how, once we were given an autism diagnosis for our daughter, so many of the things we believed were uniquely and wonderfully “Emma”, were suddenly thought to be examples of her “autism”.  Things were either categorized as a deficit or a “splinter skill”.  Splinter Skills and Other Words We Use concentrated on talents, interests and abilities.  My friend, Chavisory reminded me yesterday of the physical issues often mistakenly believed to be part of autism.  Things like allergies, insomnia, GI problems, epilepsy and food and eating challenges that often people who are Autistic have, but that many in the general population also experience.

Chavisory mentioned in her comment, a NYTimes article about a drug trial thought to minimize social withdrawal in Autistic people and those with Fragile X.  She wrote, “social withdrawal is not actually a core feature of autism. It’s a consequence of deeper issues with language, sensory processing, and motor differences.” Chavisory’s point is an important one.  This distinction is critical.  Not only because researchers are often trying to treat something that is actually something else, but because it confuses caregivers into believing they can “cure their child of autism”.

When a non autistic person has food allergies or insomnia, we say they have food allergies or insomnia. When an Autistic person has a food allergy or insomnia, many believe it to be yet another aspect of their autism.  People talk about “co-morbid” diagnoses of an Autistic person as though it were all folded into the autism diagnosis.  The problem with all of this is, it muddies the waters and makes people misunderstand what autism is and isn’t.  And it opens the door for many to believe they are curing their child of autism.  Taking care of allergies, GI issues and insomnia will not make an Autistic person non Autistic, however it will make them feel a lot better.

When an Autistic person with food allergies or debilitating insomnia, who also has hyper sensitivities to texture, taste, smell and sound, is given melatonin to help them sleep or a diet that complements their specific constitution, it stands to reason they will exhibit behavior that reflects that.  When anyone, who is in extreme pain and exhausted is helped to have that pain and exhaustion alleviated, they will feel better.  They will be able to smile perhaps, focus, be more alert, even engage in conversation, with an ease they would not exhibit when overwhelmed with pain and exhaustion.  But when this person happens to be Autistic, people use language suggesting their “autism” has been reduced; words like “recovery” and “cure” creep into the conversation.

Suddenly people become convinced that every Autistic person has food allergies, GI issues and sleep disorders and therefore ALL should do x, y or z.    If that doesn’t work, instead of questioning the underlying issue (that perhaps this person does not have an allergy or insomnia)  many will up the ante by doing more radical “treatments” to treat an allergy or condition that the person actually does NOT have.   Logic falls away.  Common sense is rejected.  The pursuit of a perceived “problem” that may have never existed is discounted as not the problem.   The answer is to pour more money into finding the thing that will remove the “autism” even though autism is not what is causing the pain and discomfort.  Special doctors and “autism specialists” are brought in to advise and treat.

When we start throwing all kinds of things at an “autism” diagnosis, when a massive array of physical and emotional things get added, when temperament, interests, preferences, talents become embedded in the “autism” diagnosis we are causing far more confusion and problems to an already confusing diagnosis.  And people misunderstand and say they’ve “recovered” their child or their child has been “cured” instead of recognizing that what’s really happened is they found something that helped their Autistic child, who had allergies or insomnia feel better.  Meanwhile thousands more, who pursue similar ‘treatments’ with no benefit to their child, conclude they need to find a better doctor, or treatment, or diet instead of acknowledging their child doesn’t have an allergy.

Em listening to an opera rehearsal over the weekend 

*Emma

Derailed Plans

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

“When Did You Know?”

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

The Tricky Diagnosis Of Autism

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.

Mother’s Day

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.