Mar 12

Diagnosis: Bane or Blessing?

In the Huffington Post article, Is Sensory Processing Disorder the New Black?, the story of mom Samantha and how she handled identification, diagnosis, and treatment of her daughter Lucy’s neurobehavioral disorder matches closely my own experience with my twins who struggle with Sensory Processing Disorder (SPD) and pyroluria, and echoes the voices of many of the parents whose essays appear in Easy to Love But Hard to Raise: Real Parents, Challenging Kids, True Stories.

Like Lucy, my boys presented with a wide variety of symptoms, each of which could be connected with a handful of potential diagnoses including Aspergers, Attention Deficit Hyperactivity Disorder (ADHD), and Obsessive Compulsive Disorder (OCD), but no disorder on the books described our children completely. Also like Lucy, when we turned to our naturopathic physician and modified their diet and nutritional supplements, we began to see dramatic improvements. Those around us said, “Perhaps they’re growing out of it,” but we knew that behind the improvement were desperate, hard-working parents searching for a solution, unsatisfied by a band-aid.

Next year, my 8-year-old boys will likely test out of their public school special education status. Our lives look drastically different than when we entered preschool three years ago. We wouldn’t be where we are now if we hadn’t found our SPD diagnosis and opened our minds and homes to changes in diet and supplements with help from our naturopathic physician, Jean McFadden Layton, nor would we have maintained our sanity in the process without the supportive community here at Easy to Love….

Article authors Heidi Brod and Kelly Dorfman, MS, LND seemed to be writing about us all,

“Samantha stopped blaming herself for a child overwhelmed by anxiety and mood issues. She also started to realize the depth of a mother’s guilt. It sapped all of her energy, leaving her tired and depleted. I think of Samantha’s story and I’m reminded as a woman and a mother, that at some point, we need to be detectives, follow our own hearts and instincts. Nobody knows our children better than we do. We also need to give ourselves a break.”

So here’s to all you tired parents reading this blog and the HuffPo article, seeing some part of your life or your children there. Brod and Dorfman are right, you deserve a break, so give and take it freely.

Oct 20

It finally happened…

For all of Lucais’ life, he has kept his rage and defiance in tact except for when we are together.  Doctors, teachers and even some therapists questioned my insistance that he was a difficult child in anyway.  He always recieved straight A’s and almost always showed compassion for people and animals, with the exception of his siblings, his father and I.  With us, he would kick, scream and punch, telling us how much he hated us and insisting that we didn’t love him.  At the age of 5 he told me one day that he wished he was dead.

I feared for the day when it left the household and he acted out in school, but I was grateful when he showed defiance to his therapist.  At last someone saw the side of my child that I saw.  I know it is a horrible thing to hope that your child misbehaves, but no one would believe me.  I went to the school the year he started kindergarten and asked for an IEP.  I was then told they would have to do the testing.  I agreed, certain that if a psychiatrist had diagnosed him, they could not ignore the findings and at least there would be something in place if he ever did act out.  I was horrified when they came back and informed that not only did they not see a need for an IEP, they weren’t even going to give us a 504 for medical reasons.  They managed to avoid me at all costs.

Continue reading

Sep 23

Guest Post: Passing it Along

This blog post is by Robbi Nester, a contributor to Easy to Love but Hard to Raise. Robbi and I recently shared a couple of e-mails about the genetics of ETL kids – how, if you were raised in a dysfunctional family, possibly due to the impact of genetic neuro-atypicalities, you are sometimes forced to relive those same patterns if your child(ren) have been impacted by these same challenges.

Here’s Robbi’s post:

from flickr user Nina Matthews PhotographyOne day a few years ago while cleaning out his garage, my uncle Bill found a box of old negatives. Having no idea what they contained and being of a curious frame of mind, he bought a photo-scanner on E-bay for a few dollars, and discovered perhaps the only surviving pictures of his and my father’s maternal grand-parents. To my knowledge, my grandmother only very rarely spoke of her parents or the rest of her family, and kept no actual pictures of them, though there must once have been pictures for these negatives to have survived.

Out of the shadows emerged the outlines of a history: in the picture, my fierce-eyed great-grandfather challenges the camera, grasping a chicken by the throat as though suggesting that this is the fate awaiting anyone who crosses him.

My petite great-grandmother, who so resembles my own grandmother, except for the earlier woman’s much more vulnerable expression, lounges on a hammock. To this day, I don’t even know her name for certain.

Indeed, my entire family’s history, at least on my father’s side, is shrouded in mystery. This is because sometime after my grandmother came to the United Statesfrom Russia in the first decade of the 20th century at the age of 12, she effectively wiped out all traces of her former life, including her original surname, family ties, and roots in the old country. In an extreme effort to escape what was to all appearances a traumatic and miserable childhood, she became an entirely different person, one I knew only as Jenny Ketler, the name she took on as an adult, after marrying her second husband, Robert Ketler.

I didn’t think much about this lost history until the birth of my son, Jeremy, named for my deceased grandmother. But then, shortly after his birth, I spoke with my uncle Sidney, the eldest of the children of that generation. He asked me why I had named my son Jeremy. When I replied I had named him after my grandmother, Jenny, he told me that her name had actually been Velma. That’s when I realized that there were many dark corners in my own family I had no idea existed.

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Sep 14

Through My Own Eyes

I want to start this post with an apology and applause for all of the parents who have remained diligent with this blog.  I have not had the strength to remain consistent or put myself out there as you have and for that I thank you.  I have enjoyed reading many of the posts and nodded my head in total agreement with many of you.  However there is one thing that sets me apart from many of you and that is my own illness. 

As someone who was a child with depression, which most likely was bipolar disorder throughout childhood, I thought I would give you a glimpse of what a child with such a disorder may face.

In school I was a straight A student and never had problems in public. In fact I often was looked to as an example by many adults, encouraging other children to strive to be more like me.  I saved my acting out for my family and myself.  I used to believe that it had to do with the fact that my father was a politician and firmly encouraged us to keep our problems to ourselves, but as I have watched my own son go through childhood and read many books about adolescent Bipolar Disorder, I realize that it is something that most children dealing with this disorder do.  We strive for normalcy and hold everything in until we are in a comfortable environment.

Continue reading

Apr 15


I am a stickler for keeping up with dates and never procrastinating with my duties of all kinds but dropping the ball on not keeping up with my scheduled blog entries is truly not my fault.

You see…I was prepared to sit down and continue my lessons on firefighting. This lesson was about public school. As I began to type my first word, the phone rang and the wonderful people who invented “caller id” let me know the high school that kept Spitfire contained for almost 8 hours a day needed me.

Needed me to come get Spitfire.

It is spring…let the mania begin.

He is feeling good, too good. So good that he doesn’t see the need to continue his medicine regimen that keeps his emotions under the radar. Now, I am not one to hit the panic button often but I hit it last week. He will soon be 18 and, according to the law, can make his own medical decisions unless I take action to become his guardian, I think that is the right word to use.

“I’m just going to tell him that I don’t need them,” Spitfire continues on one of his rampages, “Do I have to go to the hospital to get off of them, I don’t have to, maybe just one medicine will work, not six, it is too much, I don’t even know who I am, I have been on medicine so long I don’t even know the real me, everyone makes fun of me, they think I am high, I am not, MOM.”

He is relentless this time, he is serious, he never follows through with anything so I am hoping he will let this go but I don’t think so. Panic button pushed, I am rambling just like him.

Breathe, his psychiatrist will no doubt talk some sense into him. Yea, that is it.

I have been casually looking into the right way to go about getting guardianship over his medical/mental care for several months, but as of last week I am full throttle into investigating the ins and outs of this process. I am learning that everyone is an expert, all can get the job done better than the last and there are not so honest people who are trying to take my money. Get this, there is one company over the phone who wants me to give them my credit card number and…
“For the low price of $95.00 I can get you in contact with a lawyer who will walk you through the paperwork, if the process continues for more than 4 weeks we will charge your credit card another $25.00. But this is to ensure that you get all the paperwork correct and to guarantee your guardianship over your son. He is a lucky young man to have you for a mom.”


Unfortunately, “caller id” once again comes back to haunt me. This company will not stop calling me, even after I said to stop. In the words of a very mature 5th grader, “really?”

I am still on the hunt for the right answer…the story of my life. You would also think my life would know me by now and just give me the answer I need. I am eventually going to get the right answer, so come on life give it up early, please.

Firefighting classes will begin after Spring Break.

Endless in North Carolina!

Mar 22

Firefighting 101, Pt. 3

We managed to escape Spitfire’s toddler years with only a few minor scars. Life kept going and so did we…preschool!

Lesson 3:

I should have seen the warning signs upon entering the doors of a pre-school in our area, but I didn’t.

“Oh my, he will not need those here!”



“These?” I nod towards the army of comfort in Spitfire’s arms (2 blankies, 3 pacies, and Pooh Bear).



Well, let’s just say, she agreed to tolerate the attachments…for a little while!

As I pulled away from the parking lot, the marks from escaping my blaze were beginning to blister and burn. It had taken a small fire crew to pull the flames away from me.

I had escaped Spitfire’s flames, but the ashes burned in my mind,

“I failed him; he is not ready for this. Should I go back and get him? Turn around…no go to work…he will be fine in a little while. I’ll call when I get a chance or they will call me….”

This fire ignited every day in this pattern for the next couple of weeks. Everyone agreed, but me, that he would eventually stop this behavior if we did not let him “win”.

“Win? He is not the winner, ever! He is tormented daily by something that is not winnable,” I angrily whispered to myself.

The daily notes from his teacher were always the same, “he calmed down after you left, was quiet today, didn’t want to play, and he is way behind…”

This firestorm could contain his blaze at school and fuel itself back up upon returning home. Making any story of his fire storms unbelievable.


I was met at the door by his teacher who wanted to have “a word” with me before I picked him up. She delicately spoke of the terrible day that he had and wondered if anything was wrong at home. This was beyond the perfect opportunity to pull out the hose, but I didn’t!

I gave the usual speech when one inquired about his behavior, “Oh, he just didn’t sleep very well last night.” Funny how the lack of sleep is the perfect excuse for all behaviors!

I tiptoed around her various questions and then was released into the stare of blood shot eyes from my Spitfire.

I could tell this day was not going to work out well for either of us.  “At least he waited until he got in his car seat before all hell broke loose,” I continue to repeat to myself.

He had lost it, he was not reachable, a fire storm had engulfed my Spitfire and was not going out without a fight. It took every ounce of my strength to carry this blaze in the front door and from there a report of the damages were devastating.

When I realized my water source was not working on this blaze, I used it on myself…no use in wasting a water source!

Six long hours later this fire had run out of oxygen and put itself to rest on the only thing that was not destroyed the sofa.

Good news, the fire was out and stayed out long enough for me to dry myself off.

Spitfire did not return back to pre-school. Although a little late, this was one fire we could avoid…for now.   Better late than never!

As I look back on the many lessons that I have learned, I can’t help but to think of the lessons to come and the lessons that I am facing right now.  Always learning…

Mar 07

Firefighting 101, Pt.2

My first blog ever, you may recall, I questioned my abilities to post anything about parenting an easy to love but hard to raise child.  You see, my doubts of parenting were tested right out of the “gates” when our 2nd child, Spitfire, was born.  Firefighting 101 classes began for me while we were leaving the hospital.

“Oh, honey!” said the sweet voice of the nurse wheeling us to our car, “Bless his little heart, he was the loudest baby of the bunch.  His lungs are mighty strong!  We all wish you the best.”

My response was simple and a bit awkward, “Thank-you.”

I wanted to ask why, but thank-you was all that came out. It didn’t matter anyway. Spitfire began whaling the second we put him in his brand new, not a hand me down from his older sister, car seat.   We instantly understood the words of that sweet nurse.

Lesson #2:

Spitfire was four days old when we brought him home, his room was decked out in everything baseball and his bed set represented his dad’s favorite baseball team.  We were ready; our first child slept in her crib the first night home and that was our plan for our second child.  As life goes, our plan didn’t work out as planned; he never calmed down from the car ride home.

He cried through the feedings, I cried through the feedings, he cried through the burpings, I sulked through the burpings, He screamed through the changings, I panicked through the changings, he threw up on the swaddling and I threw up while cleaning up the swaddling.  Just like the directions on the back of a shampoo bottle, WASH, RINSE, REPEAT, only louder!  Spitfire could not be calmed, I tried singing to him while rocking, just singing or just rocking him. Ok, singing I can understand but rocking, come on, I am a pretty good rocker.  In my high school days, I was well known for my rendition of Stairway to Heaven on my air guitar!  Ah humor, if we didn’t laugh we would cry and laughing is much more “funner”.

Specialists, Doctors, Lawyers, Bakers, Homemakers, Neighbors, even children had tried to help calm our little Spitfire down. We even recruited his very mature 3 year old sister. NO LUCK. Yes, we pulled out our water supply pretty quick on this fire.  We were one more sleepless night from having the nice young men in their nice white coats come to take us away.  I was desperate for some sort of relief on this blaze. The opinions from all were unanimous, Colic!  Their advice, however, not the same…leg bends to relieve excess gas; it worked for me, not so much on Spitfire.  Massage belly, feed slower, burp more often, sit him up, lay him down, no on his side, no on his belly, no on his back, put him on the dryer…not in!  This helpful advice was overwhelming and not working.

Our only option was to reel in our water source and reload. The key word here is “reload”. This inferno was not going to be put out by just 2 worn out firefighters; it was time to call in for back-up and by back-up I mean hands on, get your feet wet back-up.  Not the kind that willing gives you fire safety tips by phone but actual back-up that is willing to enter the burning building to rescue all that needed to be rescued without judgment.

My sister-n-law suited up in her fire proof gear and entered our towering inferno. Our back-up, to this day, will still show up, suit up and enter our inferno. When you find that back-up, you know your water supply will never run dry.

Unfortunately, all fires are not this clear cut!  Stay tuned…

Mar 01

Luc and Me

The fiercest blue eyes you’ve ever seen, the most wild dishwater blonde hair, big for his age, loving, compassionate, loyal, passionate about what and who he loves, occasionally loud, funny, dramatic, impulsive, rushes sometimes.  These are the things that people who think they know my son say about him.  It is those people who don’t see him in his dark moments; they see him only in the mask he puts on for the world.  They are his teachers, my friends and some of our family.  It is not that my son isn’t all of those things, but he is so much more.  Lucais is also a strong soul for he has to deal with the “monster” in his head, as he puts it.  And he has dealt with it since he was only 5 years old.  Lucais’ “monster” is much like mine, because we both are diagnosed with Bipolar Disorder.  But his is still different, because Pediatric Bipolar or Early Onset Bipolar as it is also known as, hasn’t had the kind of research or given its due as adult Bipolar has.

Just what does it mean for my son to be diagnosed with this disorder?  Even I, who have experienced some of the same symptoms can’t be too sure.  According to him, there are “shadows” out to get him in his room, voices telling him he is worthless and this “monster” inside his head that makes him mean to others and himself.  Lucais can be elated, depressed and everywhere in between several times within a 24 hour period.  He angers easily and yells often, mostly at me, because I am the one he feels most comfortable with and I am the one who should know what he is going through.  But sometimes, I yell back and it gets us nowhere.  That’s when Dad or Gram steps in.  Without our strong support system, Luc and I would be lost and we know that, but it doesn’t make it any easier.

Just what does it mean for my son to be diagnosed with this disorder?  Even I, who have experienced some of the same symptoms can’t be too sure.

Perhaps the most difficult thing for Lucais to handle is his innate need to keep his condition from those around him.  If you ask any of his teachers, they will tell you there appears to be nothing wrong with him.  Yes, he rushes his homework, he sometimes can’t sit still, he gets loud, but all in all, he’s a typical 9 year old boy.  But the minute he walks through the door, the mask is dropped and the true Lucais comes out.  Sometimes he’s calm, but other times, he rages like a storm and there is no way to know what you will find when he walks through the door.

Lucais has been faced with a major challenge lately.  He had to deal with the fact that I was hospitalized recently because my medication was not working properly.  I spent one week completely isolated from my children as they were not allowed at the hospital and Lucais asked Gram and Dad question after questions, many of them relating to whether he would end up in a hospital one day too.  I am grateful that he didn’t see me while I was there.  While the hospital was fine, I do not want him to ever feel the need to ponder on what it would be like to be confined to a space and not allowed to leave until another human made that decision for you.  I am now in a partial hospitalization program and am able to be with him, but he still has so many questions.

The one thing that I want to instill in him above all else is that his illness is no different than that of someone who has diabetes or a heart problem.  It is a biological illness that resides in the brain.  It is not “all in his head” and should be respected as a genuine sickness that can be treated with proper medication and lifestyle changes.  Just as a diabetic needs to watch their diet, so must we to help stabilize our mood.  Just as someone with cancer may need to get chemotherapy, we need talk therapy.  The methods of treatment really are more alike than not.  So let me leave you with this, if you know someone who is diagnosed with a mental illness, ask yourself – if it were cancer how would I respond?  You would most likely offer your support and want to be there for them.  Do the same for the person diagnosed with mental illness.

Feb 24

Firefighting 101

As I prepare to write my first blog, ever, I question myself.

What did I get myself into? Who would care about what I had to say?  Did I do the right thing? Why, oh why, did I think I could do this?

And when I started to move the arrow to the “exit” button, an answer came from, well not above, but from a lesson I taught a group of 7 year olds just hours prior to me sitting down.

“If you don’t try, Mrs. Pawone, you won’t know if you can do it, right Mrs. Pawone.  You are a can-do kid, Mrs. Pawone; you can do it, Mrs. Pawone.”

Clearing my throat, straightening my posture, placing my 8 fingers back on the keyboard…I’m ready.  Nothing.  Type a few words, delete even more, introduction…lame, delete some more, breathe! No fancy introduction; 1 husband, 2 kids, 1 dog, 1 mortgage, picket fence, blah, blah blah.  Our daughter is easy to love and easy to raise, our son is just as easy to love but much harder to raise!When he was born all our parenting tapes, books and classes went out the window…we were on our own. 

When he was born all our parenting tapes, books and classes went out the window…we were on our own.

Over the last 11 years, our son’s ADHD diagnosis when he was 6 turned into a monopoly of alphabet soup disorders…adhd, anxiety, bipolar, sensory, etc…

When I think of the years that no one believed that children could be diagnosed with a bipolar disorder, I instantly think of the song by Barbara Mandrell, I Was Country When County Wasn’t Cool. “WHAT?” you might say.  Well, think of it this way, He was Bipolar When Bipolar Wasn’t Cool. “What, bipolar isn’t cool?” you might ask.   He was bipolar when no one believed in pediatric bipolar, oh well, I didn’t say it made sense…

As far back as I can remember, I knew our son was struggling with something that I could not begin to explain to another human being, let alone one in the medical field.  That motherly instinct they say all mothers have; I had it, I just didn’t know what to do with it.  He came into this world a spit fire and, now, after 17 long years he is still a spit fire.  We are merely his water source when the fire gets out of control.  The lesson here is to know when to use our water supply, and when to let the fire smother itself out.

Lesson 1:

Our spit fire was never much of a sleeper, from infancy a few little cat naps here and there were all he needed to get him through for hours.  When he slept it was always on, under, or next to me and never ever in his own room.  Eventually, our little spit fire and this inferno grew bigger but still not big enough to break out the water.  Surely this fire would soon burn itself out and the need for water was still not necessary.   When he was finally able to communicate, we learned that it was not the fire that caused him not to sleep in his room; it was the black shadows!

“They are not nice!” I remember him saying in his young voice.  After interrogating our 3 year old about the things he was or was not seeing in his room, I had come to a very professional conclusion…he was really seeing things that no one else could see and they were really talking to him.  CRAP!

We still didn’t use our water supply for this one for a long while.  Instead, we brought out our broom and very large area rug and began sweeping this fire under the rug.

At that time, this was a very effective way of putting out this fire.

He was 10, he had a few years of psychiatrist appointments under his belt and a few trials of medicines but this fire was a stubborn one,  we were learning to live with the extra “flame” in our bed; life was as normal as it would get.

Until, of course, the day came when our guard was down, our water source was nowhere to be found, and our outside water supply had been disconnected.

He was typically able to go to his room to dress for school, but not this morning.  His blood curdling scream that came from the hallway that lead to his room are still the most frightening sounds that play back in my head.  The things that only he could see, feel and hear were beginning to attack him.  DOUBLE CRAP!

A phone call, a few hours later and the previous negotiable medicines were now non-negotiable, we learned that this was one fire we should have used our outside water source on a lot sooner.

Knowing when, how or if to fight the fire…a continuous lesson!  Stayed tuned!