Spinning Yellow

The Story That Needs to Be Told (Part 4)

** This is the continuation of the saga.  To read the story in order go to Part 1, Part 2 and Part 3:

There's a lesson in all of this (I promise, it was worth reading)

In the end, we know it won't be the last struggle we face as a family.  Maybe it is nothing compared to the pain others go through.  But it did change all of us permanently.  Matt and I are better parents and our marriage is stronger.  We understand Scott and realize that, by getting to the heart (or hub) of the problem, we could work on a solution. 

I am reminded of when Scott was first born and I was in the hospital recovering.  The nurses kept bringing him in to breast feed.  I was exhausted, overwhelmed, and so afraid of messing up.  I would beg them to stay with me, "Is he latched on right?  Do you think he's eating?"  I would ask each nurse.  After awhile I think they must have fought over who was stuck coming into my room.  I had read all the books and gone to the classes, but I was still so insecure.  At one point during the night I thought, I can't do this.  I am not up for it.  Everything I had worried about was going to come true and any skeptics I had would be proven right.  I couldn't handle it and was going to be a lousy mother after all.

And then the miraculous thing that happens to people when they become parents happened to me.  I straightened up and shook off the sleepiness.  I stopped thinking about what people thought about me and whether I was doing what the books said to.   I concentrated on this baby that had come from my body only hours before.  I looked down at Scott and said, "It's you and me kid.  We will figure this out together."  I held him; I let him sleep; and when he and I were ready, he nursed.  I trusted myself, we learned from each other and I became a mother.

When I remember that being a parent is about your relationship with your child.  That it is a two way street.  You learning from them as much as they do from you.  I stay grounded.  I stop yelling and demanding.  I look for better solutions.  I seek first to understand where the child is coming from.  I set a good example.  And my child shows me the best they can be.  And I am the person I want to be.  And I know that I am doing it right.

If Scott had never had the pooping problem we would probably never have found out about the SPD.  Even when he was having the issues at preschool, we would have blamed the teacher or the setting.  Honestly, many people attributed his difficulties to immaturity or lack of home structure.  I am sure there are children all over the world who are in the same predicament.  I've seen some that I suspect have similar issues who live very close to me. 

I see children differently now.  When a child acts up, I wonder what might be the cause.  I used to silently scold the parents and pity the child.   Now I want to ask questions about what is really going on.

As I wrote this I tried to stay on topic about Scott's pooping odyssey.  I know it may not seem that way after 4 separate posts!  But there is so much to say about this (I could write a book).  I want people to know about SPD and the kind of effect it can have on a child.  The not so obvious outcome of certain neurological difficulties (hence the tag line: Beyond the Obvious).  I also want to emphasize what I learned personally and how the experience changed me and how I view everyone around me.  Your child does not have to have a specific ailment in order for you to learn how to be a better parent or a better person in general. 

If I tossed in some extra stuff it is because I want to remember all of this.  Many people said, "you'll be so happy when this is behind you".  Sure, I am glad I don't have to change Scott's pull-ups anymore and it is wonderful not to watch him be in pain each day.  I feel that a weight has been lifted from all of us.  But I don't want to forget how far we've come and what we've learned.  One of the reasons I wrote this is so that I can look here and put it all back into perspective.  Our experience is worth sharing.  For someone else who might find out something, look at themselves or their children differently. 

And for me and my family.  To know that we can conquer anything as long as we work together.

The Story That Needs to Be Told (Part 3)

** This is the third part of the story started with Part 1 and then continued in Part 2.  Fair warning: lots of details about pooping to follow!  Thank you for staying with me on this!

 

How all the pieces finally came together

It all started to make sense.  Scott really did have a disorder.  We had him evaluated by an OT (Occupational Therapist) and she (another amazing person who came into our world) found all kinds of sensory related problems that he had.  We knew about his obvious light, sound, and texture sensitivities but we learned about other sensory related problems stemming from difficulties with vestibular and proprioception and modulation of activity.  Was it possible that he wasn't just defying us, being contrary on purpose, but that there was a reason for his behavior? 

He experienced the world differently.  It was overwhelming and overstimulating in many ways (bright lights, loud and distracting sounds, scratchy tags in clothing and paper napkins) and he couldn't get the information he needed in other ways (muscle input and spinning).  We learned about how to calm him down and why he was so physically rough.  Why he couldn't ride a bike and hop on one foot.  Why elevators scared him.  Why he so desperately needed to be in control because he couldn't control how his body was reacting to all the stimuli. 

It all did relate to the pooping problem.  He couldn't organize his body right to relax because of the fear of the pain he had before.  The mind body connection.  A phobia as real as they come.  Like how you freeze when standing in front of a crowd to speak.  Or you look down at the water from a high dive and can't make yourself go over the edge.  Once he was asleep and completely relaxed, his body could let nature take its course and he could avoid the whole unpleasant business.

From the initial IU screening, Scott got evaluated and then received a formal IEP that included OT and an itinerant teacher.  It was all positive, steps towards a solution, but it took a while to really believe in it.  The proof was in the affect that OT was having on him and ultimately how we completely changed our focus.  From thinking that we were the problem in how we were manging Scott to looking at him as a complex person who needed our help.  Working with him instead of against him.

I was busy shuttling him around and reading about SPD.  My mom watched Jane while I was out and about.  I met with Scott's teachers frequently and decided to keep him at his school and avoid any more changes in his life.  We understood Scott better and enjoyed his company more.  We realized that he had amazing strengths and that his issues could be addressed.  We had had a falling out with the Parenting Consultant and even my mother didn't understand what was going on with Scott.  She still believed that we weren't trying hard enough, that our priorities were not right.  We learned to trust ourselves and that most people, including friends and family, may never get it.

And he was still pooping in his sleep.

We knew we needed him to poop while he was awake in order to prove that it didn't hurt anymore and also so that he would become desensitized to the unpleasant part.  Retrain his body to do what it should have been able to do naturally.

At the beginning of 2006, when Scott was not yet 5 years old, we did what we refer to as The Intervention.   We loaded him up on medicine (Kondremuel and Glycolax) and forced him to poop.  How did we finally get this to happen?  Dr. Chris showed us how to hold him in a way that prevented him from being able to stop himself from pooping.  It was a struggle.  He screamed and cried and fought.  Matt had to really hold him tight, I wasn't strong enough in the beginning.  The first time he actually went, we were all in shock.  He used to say, "I don't have to go", and then he'd say "I'm pooping 1000" (meaning a lot).  There was relief and then realization, "I wasn't holding it in, Mom.  I just didn't know how to let it out."  Right.  It's all in how you look at it.

From then on, it was a gradual transition from him being able to poop without us holding him to doing it in the bathroom (not on the toilet).  To realizing that he could go even if he was on the toilet and still had on a pull-up.  To, finally, him doing it alone.  Baby steps along the way.  Just enough for him to handle and feel successful without getting overwhelmed.  It wasn't easy and it wasn't smooth, but he made progress.

We created a football game and bribed him with not being able to watch sports until after he went.  We used his fabulous understanding of numbers to quantify everything and put it in terms he understood.  Matt took him to a Flyers game (a huge feat to get tickets because they were actually good that year) because we were so proud of him.  By the time he turned five he went to the bathroom all by himself only calling us in to help him wipe.

That was over a year and a half ago.  We've had a few rough patches along the way.  Times when he's been out of his routine (like vacation)  or overstimulated (like a Phillies game).  Once or twice where we've cut back too quickly on the medicine.  But the bumps are small compared to what we had been through.  And the recovery goes faster each time.

Solving this part of the puzzle has helped him to get his body back into control and has lowered his anxiety.  By doing that he could then work on other issues.  It is all connected through the hub, each spoke needing to fit into place in order for the wheel to function properly.

Coming next - the last (thank goodness!) installment, Part 4  There's a lesson in all of this

The Story That Needs to Be Told (Part 2)

** Thanks for all your support so far.  The saga continues here.  I am resisting the urge to edit these posts and am just publishing them as is, from back in May when I wrote them.  I am not sure why, but that seems like the right thing to do.

This is the second part of the story started in the post The Story That Needs to Be Told (Part 1) Let's start at the very beginning.

The hub of the problem

All through the summer of 2005, when Scott was 4 and Jane was 1, Matt and I tried to figure out what was going on with Scott.  The Parenting Consultant kept telling us that she didn't think anything was truly wrong with him, that he was "one of the 10% of kids who are just harder to parent".  We knew he was more difficult, that everything was an issue for him.  But he still needed to learn how to poop.  And the stress, frustration and anxiety at home were unbearable.  It wasn't right.

Matt came up with the analogy that there were all these symptoms, stuff that Scott did differently, as spokes on a wheel.  There must be a central point from which all these seemingly unrelated things stemmed.  What was the hub, the origin of all these little things?  Was it Autism, or more specifically Asbergers?  How about ADHD?  He had parts (symptoms) of both of these disorders, but didn't really fit into either one.  Maybe he had a mental disorder like depression or bipolar.  Were we neurotic parents assigning a problem when there wasn't one?  We knew he had a certain temperament.  He was sensitive, persistent, perceptive, and smart.  Was this actually a problem?

As Jane got older we noticed that she was very different.  The suggestions in parenting books worked on her.  She exhibited normal toddler behavior.  We could distract her and move past things.  With Scott it was impossible to get over something that he didn't like.  She could following along to "Head Shoulders Knees and Toes" and tell a joke at less than 2, while Scott couldn't do those things at 4.  Was she more adaptable because she was a girl?  Because she was the second child?  Or was it that we were the same parents, doing a pretty good job, but our children were two completely different people with their own unique needs?

One of my friends mentioned the book, The Out of Sync Child.  I dismissed the recommendation figuring that the Parenting Consultant would surely understand if he had some obscure Sensory Integration Disorder.  Didn't all kids have sensitivities that they outgrew as they got older?  Besides that, one of my good friends, an OT, had already said that he probably avoided pooping because he didn't like the way it felt or smelled.  So what?  He still needed to do it.  What kind of parents were we if we couldn't make him do a simple, necessary, bodily function? 

The Parenting Consultant suggested we do potty sits to get Scott used to at least being in the bathroom.  The idea was that he wouldn't be able to hold it in and when he did go he'd realize it didn't hurt.  The phobia would go away!  He'd be cured!  We dutifully followed through (his problem wasn't going to be the result of our lack of resolve).  We set a timer and made him sit on the toilet 3 times a day for 5 minutes at a time.  It was sheer torture.  He would scream at the top of his lungs.  Stand up and try to run out of the bathroom.  Hold his legs out straight in a pike position.  Tears streaming down his face he would count the seconds away.  Matt pointed out that this wasn't working for anyone.  I thought I just had to see it through, like Ferberizing, or some kind of horrific training exercise.  Fortunately, we stopped that activity when we saw how much stress it put everyone through.  The Parenting Consultant decided that we were weak.

A chance conversation with the nurse at the pediatrician's office led us to another GI at CHOP.  He also concluded that Scott did not have a physical problem that was preventing him from being able to poop.  We mentioned his sensory issues and the doctor suggested we meet with a psychologist.  We made the first appointment we could get, for 2 months later.  Meanwhile, we silently changed him every night, regularly at 10 pm, 2 hours after he had been asleep.

Scott started his second year of preschool.  Within the first few weeks we noticed that he wasn't talking about school the way he had the year before.  He didn't want to go.  He told us about how he got in trouble at school and had to sit out during recess.  When I asked the teacher, she said, "I'm so glad you contacted me.  He is having a lot of trouble keeping it together, following the rules, getting along with his friends.  He is too rough and in the kids' faces.  We can't manage his behavior and the kids don't want to play with him."  Great.  Why hadn't she told us?  He was anxious, unhappy, quiet.  He started spinning around at home and chewing his clothes.  Actually chewing all sorts of inedible things.  He was way out of control, grabbing things from Jane and having crying fits and tantrums.  He said his teachers didn't like him and that he wished he was dead.  Was this all related to the inability to poop?  Which came first, the problem with pooping or the anxiety? 

Wait, I had read about those behaviors (spinning and chewing) in that book, The Out of Sync Child.  Maybe there was some truth to that crazy disorder.  We arranged for a screening with Early Intervention to see if he was eligible for any help.  His teachers alluded that they needed a person to shadow Scott while he was at school.  He was that disruptive.  We couldn't afford to pay someone $50 per hour to follow him around.  We started looking at other preschools so that we would have options when his current school kicked him out or we chose to move him.

Then we had the meeting with the psychologist at CHOP, Dr. Chris.  You know how you come across people in your life that you just know are going to make a difference?  We had a lot riding on that appointment and she did not disappoint us.  She told us to rub Scott's back while we were talking to him and see how he'd calm down.  She was all over the idea that he had Sensory Processing Disorder and recommended we seek help from the IU, a private OT, and continue to see her.  She reassured us that Scott was going to be OK and that we were alright.  She explained to Scott why it was so important to be able to poop.  She will forever be one of the best people we stumbled across.  Maybe we didn't know all that at the first meeting, but by the time we were seeing her for our last meeting, 6 months later, we knew she was the person that we had needed all along.

Coming next, Part 3 How all the pieces finally came together 
 

The Story That Needs to Be Told (Part 1)

** I wrote this post in May, along with the other 3 parts, and never published it.  It is the story I meant to tell all along and then just got sidetracked with all the current things I could write about.  I am publishing it now, without any changes, because I need to and because I am too tired to write something worthwhile about all the other things I want to right now.  I think my writing has improved some since I did this, so please be kind.  It is our story.  Scott's and Matt's and mine.  Not a day goes by that I don't think about this and how much it has impacted us.

For over two years, Scott only pooped when he was asleep. 

Whew.  I did it.  Jumped right in to tell the hard, cold fact.  The story of how this happened, how he finally got passed it and how it changed our family forever is the thing I need to tell.  When we were in the middle of this, we searched for help.  Surely in the vast world of the internet there must be someone who had the same issue and could offer some solutions.  We came up dry.  If anyone else had the same problem, they weren't sharing.  Or perhaps they were just as frustrated and embarrassed as we were.  Here's to hoping that by telling our story, someone else will be able to avoid it.

This is the first of 4 posts.  I know, too much, but I thought it would be better broken into pieces and it does span a period of more than two years.  I will post each one, in order, daily (maybe), starting today.

Let's start at the very beginning

When Scott was around 2 1/2 years old he started having constipation issues.  He would wait to go until he was in his crib (or bed), usually as he was waking up from a nap or in the morning.  We figured this was how he was comfortable going and didn't interfere.  Then he started crying when he'd wake up because it hurt to go.  His poop would be too hard.  I am not a medicine taker, so I looked up all the typical remedies.  No bananas, lots of water, fruit juice, etc. and we tried them all.  Unfortunately, he ended up with a serious back up problem, a trip to the doctor and a subsequent at home enema.

The trauma surrounding all of this was awful.  Scott hated going to the doctor and he was terrified of getting hurt.  The whole scenario; Matt having to come home, me 8 months pregnant, a hysterical little boy, holding him down, just makes me want to cry.  I thought it was so horrific, but that we HAD to do it.  It would be one of those parenting moments we'd get through.  Looking back now, I am even more sad to realize that it was only the beginning.

After that, we gave Scott a mineral oil laxative daily.  He was no longer considered to have constipation because he went every day and his poop was soft.  But he still went when he was asleep, or just as he was waking up.  We were not in a hurry to potty train him, especially given the circumstances.  Our pediatrician told us it could take several months for him to get over the trauma and forget that it could hurt to go.  Jane was born, we were busy, and we just tried to be patient.  Everyone said, he'll potty train when he is ready, there is no rush. 

After he mastered peeing in the toilet, at 39 months old, we figured he'd get the pooping thing.  But nothing changed.  We asked people for help, we looked in books, we were told over and over that it was a potty training issue and to lay off.  He'd get it when he was ready.

Then he stopped napping and one of his opportunities to go per day was taken away.  Now he was often uncomfortable, complaining that his stomach hurt.  We had to leave parties, restaurants, other people's houses because he was doubled over in pain.  We were afraid to go anywhere.  We knew he had to go and would chide him about holding it in.  It won't hurt, we promised.  You take the special medicine, we told him.  We threatened him with the "stick down" medicine again.  We thought he was being defiant.  We coaxed him, guilted him, bribed him.  Nothing worked.

He started having problems peeing, too.  He had to go several times an hour.  I was worried they'd kick him out of preschool for being so disruptive asking to go to the bathroom constantly.  We feared he had diabetes.  We got a referral to a pediatric GI who told us he had a problem called pollakiuria, brought on by stress and not fully emptying his bladder.   Because he was holding in his poop he wasn't letting out all his pee.  Apparently children can hold in poop better than adults because their colon muscles aren't strong enough to push it out .  The GI told us he was fine otherwise and that we should look into how we were affecting his behavior. 

He was almost 4, then he was over 4 years old and now we became desperate.  What were we doing wrong?  How could this be happening?  And still our pediatrician didn't think it was a problem.  We started seeing a Parenting Consultant/Behavior Specialist.  She was very kind and helpful in lots of ways but none of her ideas changed anything.  It all boiled down to the same thing; that we were the problem.  We were too hard on him, or not tough enough.  We weren't parenting correctly, that was for sure.  How could we be if all the doctors told us he was physically fine?  It had to stem from his behavior which was  clearly our fault.

We blamed ourselves.  We blamed each other.  We fought when Scott went to bed at night.  We figured that his body would forget how to poop and he'd be in diapers forever.  We talked to everyone and then stopped telling people.  We knew they thought we were lousy parents or, at the very least, secretly congratulated themselves for not having that problem.  Scott knew he was doing something that was very wrong.  Every day it came up.  He begged us to keep it a secret, he was humiliated and frightened.  He didn't know how to fix this and it was very apparent that we didn't either.

And life went on as all people who have ever weathered a crisis will tell you.  We continued to get up and go about our day.  To look for answers but also live our lives as best we could.  We all had to eat, go to school and work and other activities.  We couldn't stop time to solve this and then turn back on the clock when we had our answer.  The loss of time is one of the hardest things to get over.  I wish we could go back and live that time again without the problem.  I know it would have been so much happier. 

But then we wouldn't be the people we are today had it been different.

Coming next - Part 2 The hub of the problem