Tag Archives: Constipation

The Fallout

I was thinking about how we had to take Emma to the hospital last week because she was complaining about a pain on the right side of her abdomen.  Once there they took an x-ray, told us she was constipated and that we should give her an enema.  Everyone became focused on the “constipation” issue, us included and while I wouldn’t agree to the hospital restraining her and giving her an enema no one said much about the fact that she had a fever and that the pain she was complaining about may have been due to the stomach flu.  That night when her fever spiked, her body burning up and the following morning when she threw up, it was pretty evident that in fact she did have a case of stomach flu, just as her brother had three days before.  But the doctors at the hospital didn’t mention the flu, even though we told them her brother had had it.

What happened in the hospital is an example of how quickly things can derail with an autistic child.  The idea that an enema was considered an appropriate next step for a child with a fever, complaining of a stomach ache who’s brother just had a bout of stomach flu, seems somewhat incredible now looking back.  I don’t know how many people have experienced an enema, but it is not pleasant.  When I was in labor with Nic, I was given one to speed up my contractions.  I was in labor for 38 hours.  I was determined to give birth naturally and it was thought that the enema would help.  I have no idea if it did, but it was both horrific and memorable.  I no longer have any memory of being in any real pain during labor, though Richard assures me I was, but I can still vividly remember the enema.

Emma hates enemas.  She has had many of them.  The minute the word enema was said, she began to cry.  The idea that we were going to allow a group of strangers to restrain her as she tried to fight them off (all the while with a fever and the stomach flu) seemed, if not abusive, damn near.  I just couldn’t give the okay.  I couldn’t.  But then once home I began monitoring her bowel movements and that didn’t seem like a good idea either.  There is so much talk, articles and books have been written about the relationship between autism and GI tract issues.  The whole leaky gut theory adds to the concern that if allowed to continue constipation may even cause neurological damage.  With this in mind the word “constipation” when applied to an autistic child feels loaded and it is difficult to step away from the feelings of panic long enough to gain any perspective on what is happening.

Last night, having, until then, somewhat successfully tamped down my feelings of uncertainty, worry, concern, rage and guilt (there is always the guilt lurking) I came in touch with all those feelings and more.  But instead of feeling each of these things, initially I just felt guilt.  Tremendous guilt that I had begun monitoring her trips to the bathroom, that I hadn’t seen right away that she had the stomach flu, that I had allowed the doctors suggestion that her pain was due to constipation (a hot button for us, as it was such a daily concern for so many of her early years) to override all the other evidence, this was my crime.  And last night, I became judge, jury and prosecutor, the only thing missing was my own attorney.  I forgot to bring along someone to defend me.  Years of blame, years of condemnation came bubbling up as though they had always been there.  As though I hadn’t done any work on any of this, as though blaming myself for Emma’s pain would somehow lessen it for her.  Let me take her pain.  Let me bear the brunt of it.  If only I could, I would.  If only this was how it worked.  Give it to me, just please, please remove hers.  She’s just a little girl.  I can take it.  But it doesn’t work that way, does it?  I can’t take her pain from her.  I have held on to guilt, the feeling that somehow I am at fault for Emma being born autistic, for the pain that causes her, it is somehow my fault.  A kind of mental contortionist, I have found ways to always blame myself.  I thought I had gotten better at this.  I thought I had let go of most of it.  But last night showed me, I have not.  It’s all there, waiting.  Waiting for the first sign of weakness.  This is the fallout.

For more on our journey through Emma’s childhood marked by autism, go to:  Emma’s Hope Book


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

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

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

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

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

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

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

The Hospital

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

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

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

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

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

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

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

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

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

“Yes.  It does.  I know.”

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

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

Surgery & Emma

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

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.