{Sometimes} My S.P.D. Makes Me YELL at My Kids

Below is an excerpt from my book, “Yell Less, Love More: How The Orange Rhino Mom Stopped Yelling at Her Kids–and How You Can Too!” I post it here because it is an important story to share and not just because sharing it gives me more strength to cope, but also and more so because sharing it will hopefully help you gain insight into some of your kid’s (and maybe your) behaviors. My hope is that said insight will help you gain empathy for your child’s sensory-related behavior and therefore help you “Yell Less, Love More.” My other hope is that if you comment, you comment with kindness and not judgement.


I am going to let you in on a very personal struggle, one that I have only shared with a handful of people in my life because it is so embarrassing and frustrating that I have just hid it and ignored it for years. Oh, how I hoped that it would just magically disappear and that I would finally be free of the pain and shame I feel whenever the struggle rears its wicked ugly head, which is at least three or four times a day. But it never disappeared and once I started the Orange Rhino Challenge, I could no longer hide from it, or run from it. When I started tracking my triggers and gaining deeper awareness as to what made me explode, I discovered—or rather, was finally forced to admit—that this little struggle of mine wasn’t just real, but it was also a really big (like gargantuan) trigger. Yes, there was no ignoring the fact that if I wanted to stop yelling, I needed to start managing this struggle of mine STAT no matter how hard it was.

Ya’ ready for my struggle?

I have Sensory Processing Disorder, also know as S.P.D.

Um, what the heck does that mean, you ask?

Block out NoiseIt means that I have “sensory attacks,” brought on by any, or all, of my five senses being overloaded to the point where I can’t keep myself together and I go from calm(ish) to anything-but in a split second. It might come on from too much noise or too much chaos, or maybe I feel too hot or my clothes feel too tight or itchy, or maybe I taste a mushy food or smell a disgusting odor, or maybe it is a combination of all of the above that sends my body “under attack.” Sometimes the attacks come completely out of the blue; sometimes I sense they are coming. Either way, I respond in what feels to be a very irrational, very over-the-top way. It can take thirty minutes to an entire day to feel calm again and in control of my body (and it takes a lot longer to forget the embarrassment and disgrace I feel for losing it).

During a “sensory attack,” I literally feel the physical desire to lose it in a rather aggressive manner. I feel like the inside of my body is on fire, that my body is trying to burn my skin so that it can get out and escape. I feel like I want to run away at full speed and keep running until I cool down, until my heart stops beating so hard my chest hurts, until my skin stops itching so much that I want to tear it off, until the intensity that overwhelmed me stops. My body, my mind, and my soul want to flee the intense physical response and displeasure they feel from the sensory attack, but they can’t.

I feel trapped and that’s because I am trapped, trapped at the mercy of the “sensory attack,” and all I can do once an attack has hit is to wait it out. And since I can’t flee the pain or the frustration, I fight. I fight my body by throwing things. I fight my body by crying. I have even fought my body by pulling my hair, by hitting my head. And I fight by yelling.

a text block-19I would love to write that my children have never witnessed one of my attacks, that they never saw me shove my dinner plate across the table and then refuse to eat because my Italian sausage was just the wrong texture at the wrong time. I would love to write that my boys never saw me tear a brand-new (and very fashionable and cool!) scarf off from around my neck and throw it in the garbage while yelling, “I hate clothes. Hate them, hate them, hate them! Nothing every feels right!” I would love to write that they never watched me go berserk when my husband turned on a sports radio show to catch “the big game” and all the scratchy noise of the poor reception made me start screaming at him uncontrollably to turn it off before I exploded. Yeah, I would love to say they have never witnessed any of the above, but that would be a lie.

And I would love, even more so, to write that my children were never the targets of one of my sensory attacks, but that would also be a lie. The bad news is that they have indeed been on the receiving end of one of my sensory moments, but the good news (okay, better than bad news) is that at least it was yelling and not worse. Oh, oh, how I have screamed bloody murder at them when my body just couldn’t handle another noise, no matter how discreet or unintentional.

I have yelled, “Back up now, or else!” when my kids innocently chewed popcorn near me, not next to me, but just near me, and with their mouths open so that I could hear every crunch.

I have yelled, “Be quiet NOW, it is just too much! I can’t stand it. I am going to leave!” when all my boys are talking at once and getting louder and louder so that they can each be heard over each other.

I have yelled, “Okay, enough of the hugging! I don’t want to be touched anymore! Get off of me!” Yeah, that was an awful thing to say, and worse, I have said it a lot.

And I have yelled at myself after the fact, “Get a grip! All you want is for your kids to be quiet and not overly playful because you can’t handle noise and chaos. Then why did you have kids?! And four of them?! All you do is constantly squash their joy and enthusiasm just because mommy can’t handle it. Seriously?” I have tried so hard my entire life to keep my S.P.D. under control and hidden. And when I became a mom, I did learn to control it better because there is nothing I wanted more than to love my kids and not unleash my wrath on them. And I did keep it under control many moments. But yes, there were moments that I didn’t, and those left me beyond humiliated, beyond discouraged, beyond heartbroken. What kind of example was I setting?!

But the good news, yes, the really good news, is that the Orange Rhino Challenge forced me to finally manage my S.P.D. My S.P.D. no longer causes me to Y.E.L.L.—yell exceptionally long and loud—because tracking my triggers increased my awareness and forced me to figure out how to manage this really big trigger.And luckily for me, at the same time that I became aware of and accepted my S.P.D. as a trigger, one of my sons started some occupational therapy for his own struggles with S.P.D. Everything he learned, everything he told me, and every exercise we did together to “help him” actually helped me learn how to manage my own S.P.D.

Tip #2I learned to do push-ups when I felt an attack coming on.

I learned to put earmuffs on when the noise overwhelmed me.

I learned to pull my fingers gently to calm down.

I learned to eat crunchy foods like apples to organize my mind when it felt fried.

I learned to take deep breaths, even though I hated to, big-time.

I learned to prioritize sleep because it is key to regulating my mood.

In fact, all these little tricks worked so well to help me cool down and prevent and put out sensory attacks that I decided to try them to help me cool down and prevent and put out yelling attacks as well. Well, wouldn’t you know … my S.P.D. tricks work great on Y.E.L.L. attacks too!

Looking back, learning to manage my S.P.D. has been a heck of a lot easier than I expected. Have I been able to make it completely disappear, as I have dreamed of for years? No, I am just the Orange Rhino, not a fairy godmother! But, but, in finally having a more complete awareness of the depth of the problem, I was able to start actually managing it to the point where it is no longer as major an issue, which let me tell you, is nothing short of awesome.Not only am I not yelling at my kids unnecessarily, but also I am much more able to model how to control emotions and calm down. This helps me sleep way better at night.


 YLLMcrop2“Yell Less, Love More: How The Orange Rhino Stopped Yelling at Her Kids–and How You Can Too!” is a 30-Day Guide complete with 100 Alternatives to Yelling, Simple Steps to Follow, and Honest Stories to Inspire you on your own journey. It is available for sale now at all favorite on-line retailers and in select stores. Click here to order from your favorite site.

Yelling Does NOT Define Me as a Parent

Hi, my name is The Orange Rhino and I used to yell at my kids.

In fact, I yelled so much that I started The Orange Rhino Challenge, a promise to not yell at my four boys, then ages 5 and under, for 365 days straight! As I started publicly writing on my blog about my journey to yell less, I received a boat load of wonderfully loving and supportive comments such as, “Thank you so much for sharing your story and letting me know that I am so not alone!” I also received a couple of well, how should I put it, um how ‘bout, outright nasty and hurtful comments. The following is a sample of one of the nasty comments. Mind you, it isn’t verbatim because the email was so incredibly hurtful that I erased it immediately so that I wouldn’t dwell on it. (I knew at that point that dwelling leads to yelling and that it needed to be avoided at all costs when possible.) Anywho, after reading about my challenge, one woman wrote to me,

“You know, maybe yelling isn’t your problem. Maybe your challenge shouldn’t be about not yelling. Maybe it should be about not being a parent. I think your problem is that you shouldn’t have had kids in the first place, that you are an awful mom if you yell so much that you needed to create a Challenge to stop.”

Um, can I get an, “Ouch!?”

I felt incredibly attacked at the moment and her comment immediately started pushing me into self-criticism mode. Was she right? Was I an awful parent? Did I have no redeeming qualities? Was I not meant to be a mom? Fortunately for me, my oldest son had ever so quietly snuck up behind me and read the entire email and then started a heartwarming conversation that quickly pulled me right out of self-criticism mode.

“Mommy, why is she saying you shouldn’t be a mom? Are you not going to be my mom anymore?” he asked tears forming in the corner of his eyes.

“Oh sweetie. You weren’t supposed to see that. Of course I am always going to be your mom. I am not going anywhere.” I said as I pulled him into my lap.

“But mom, why did she say those mean things about you?” he implored.

“Well, because she thinks that because I used to yell at you ‘so much’ that I had to become an Orange Rhino that I am an awful parent.” I stated, fighting back tears.

“But mommy, you aren’t an awful parent. You are a great mom.” He said ever so sweetly as he wiped a tear off his cheek.

Um, can I get an “Awwww?!”

blog_v4To be honest, I haven’t thought of this story until just today. I had simply pushed the memory as far back into my mind as possible because not only did her accusations hurt, but more so, they really, really struck a nerve. But then I received numerous emails today in response to an old blog post titled, “A Mom’s Regret About Yelling,” and this painful memory came flooding back. Fortunately, a powerful insight came right after!

In the post, my son was headed off into Kindergarten and that to me symbolized the start of him officially being with teachers and friends more than with me. I wrote about how disappointed I was in myself that I spent so much of the last six years, my unshared years, with my son “complaining and yelling instead of loving.” I felt so incredibly sad and let down and wrote that I regretted that I hadn’t enjoyed all the time I did have with him because I was so often yelling and being, well, grumpy.

Sitting here tonight, processing the comments and my post and my painful memory, I just want to go back two years and give myself a hug. I just want to go back and say to myself,

“Girl, it’s okay. Yes, you used to yell. Yes you regret all the times you did yell. That’s normal and expected. No one likes to do not nice things. But you know what, you’re missing something. You were looking at the situation from your eyes and not your son’s. You saw yourself as having yelled sooooo very much that you missed soooo very much. You saw yourself as just a yeller and nothing else. I am not sure that is the truth. Is that what your son experienced? Did he sometimes see you as a yelling parent? Yes. Do you wish that weren’t the case, does he wish that weren’t the case? Yes.

But do you know what else?
He didn’t just see you as a yelling parent.

Because even though you did yell more than you felt comfortable with and probably more than acceptable, you didn’t yell 24/7. You did a lot of other things too, a lot of great things that you shouldn’t regret for a moment. It is because of those great things that your son saw you as a parent who sure, used to yell, but who also used to and still does…

DSC_0810Give him kisses on his boo-boo’s.
Tuck him in at night.
Comfort him when he has a nightmare.
Play Candyland with him all night long.
Encourage him when he’s lacking confidence.
Take him apple picking.
Plan special birthday parties for him.
Teach him to do new things like riding a bike.
Help him with homework.
Laugh with him during water fights.
Advocate for him.
Teach him how to build a master Lego.
Throw footballs to him.
Love him fiercely in a way no other person could.

So dear self, please, please don’t beat yourself up about the past, about the moments you yelled. Yes, by all means remember the past just enough so that it continues to inspire you to daily work at being an Orange Rhino, but don’t hold onto the past so much that it is the only thing you see when you look at yourself as a mom. Those yelling moments aren’t the only moments that make up your journey as a mother. Those yelling moments don’t define you as a mom. The whole package defines you and the journey has just begun.”

community_v4Obviously I can’t go back two years and tell myself this to help me feel better and perhaps stop a few tears. But I can write it now so I can and share it here with all of you, so that is what I will do!

Dearest Orange Rhinos,
You aren’t an awful parent because you are struggling with yelling. You aren’t just a yelling parent, you are a heck of a lot more too! Don’t let yelling define you as a parent. Instead let how you find the strength, courage and determination to change, along with your fierce love and commitment to your kids define you.

Xoxo,
The Orange Rhino

challenge_theP.S. I write this now and in a few days, maybe weeks if I am lucky, I know I will begin to once again doubt myself as a parent and will focus on all I am doing “wrong” instead of seeing all that I am doing “right.” I know I will forget that all my inadequacies and mistakes as a parent don’t define me. I know I will forget that there is more to me as a parent than the negative stuff I love to highlight. And I know that I will forget that every day I tip the scale away from “yelling/cranky/not-doing-this-or-that-right” towards “Loving More” and that THAT is what really matters.

 

 

book_v4To learn more about how to tip your personal scale towards the “Love More,” side and to realize that yelling doesn’t define you, check out my new book due out this Saturday, November 1st! “Yell Less, Love More: How The Orange Rhino Mom Stopped Yelling at Her Kids–and How You Can Too!” is a 30-Day guide with 100 alternatives to yelling, simple steps to follow and honest stories to inspire you on your own journey to “Yell Less, Love More.” You can pre-order it here! 

Learning to “Yell Less, Love More”

TORC_logo_blogTour3-2

This post is the last in the “Yell Less, Love More” Blog Book Tour. I have been touched (and humbled) by every single story shared by the 23+ Orange Rhinos who participated. Thank you to all of them and thank you to you all for reading and supporting the writers. They each bravely share a very personal story and you all made them feel safe and not judgement. This last post needs it especially. Please give your love to “Island Mama,” a single mom to two beautiful children.

Who am I?  How did I become this angry, yelling idiot?  I grew up in a home where we were called “honey bunch” and “sweetie pie”.  I don’t ever remember being yelled at as a young girl.  I was spanked on the very rare occasion, but not yelled at.  My childhood home memories are of nothing but love and happiness.

I have always wanted to be a mother.  So much so, that I said that I would have children by myself if I wasn’t married by 30.  I always imagined myself in a loving marriage.  I would have a husband who was a loving and fully engaged father, just as my own father has always been.  I didn’t know any different…  So much for that plan!  I ended up in a crappy marriage with a man who was disengaged as a husband and a father.  A man who expected our son to listen to me at all times and who would get angry with ME when our beautiful, innocent son didn’t obey me (when he was 1-2 years old, may I add).  I’m pretty sure I started yelling at my son as an anxiety reaction.  I would get so worked up thinking about his dad’s angry reaction towards me for his disobedience.  When he wouldn’t listen, it was like I went into full-out fight or flight mode.  And I would yell….  

Things only got worse when we moved very far away from any type of family support network.  I was alone with my son 10 out of every 14 days with no friends and no family.  Let’s just say the yelling became engrained in our household fabric.  I was such a silly woman… I felt so much emptiness inside, so what did I do?  I got pregnant with baby #2.  He walked out 11 weeks into the pregnancy.  My son and I then moved home to be near family and my support network.

Here I am 5 years later.  My kids’ dad and I are now divorced and live on opposite sides of Canada, which leaves me as a completely single mother with little time to myself.  I haven’t been in a real relationship since the separation.  I have dated a bit, but have never involved the kids.  I’m not looking for sympathy by any stretch of the imagination, but it’s really bloody hard doing this job on your own!  I’m sure many of you reading this know exactly what I mean when I say that….  Unfortunately, I’m still yelling at my son.  The weird part?  I rarely yell at my now 4 year old daughter…  He’s 8 and this fact does not slip past him.  He sees that I’m different with her.  Part of me feels as though I can’t help it… which I know not to be true.  I’ve known for a long time that I need to change.  Then I found The Orange Rhino.  This amazingly brave woman who bares her soul to us is my inspiration every day.  In her story, I know that I, too, can stop yelling!

I started following The Orange Rhino’s story in early 2013.  I stumbled upon her Facebook page and felt an instant connection to her.  I signed up for a 30 day challenge via email in June of that year, but failed to complete the 30 days.  My children went to their father’s for the summer, and I gave up on the challenge.  I have continued to follow her blog via Facebook for the last 15 months.  When the call for emails to have a chance to review the book Yell Less, Love More: How the Orange Rhino Mom Stopped Yelling at Her Kids – and How You Can Too! came up, I jumped on it.  The email challenge didn’t work so great for me.  I do much better when I have a physical object like a book to refer back to.  I was one of the lucky Yellers randomly chosen to partake in this extraordinary opportunity.  Here is my experience…

One of the first things that struck me about this book was the feeling I got when I started reading it.  It feels like you are sitting having a conversation in your home with Sheila, aka The Orange Rhino.  She has written her book in the same way she has written her blog…baring her soul…holding nothing back from us…just telling us the unbridled, raw truth.  Her complete honesty inspires the reader to be completely honest with yourself.  And boy, does that truth sting at times.  I lost count how many times this truth has brought me to tears over the last 30 days…And I’ve laughed almost as much as I’ve cried.  

There are only positives to this book.  It is set up as daily chapters of 3-4 pages each.  This is great for the busy, tired parent who doesn’t have a lot of time to devote to reading each day.  The daily tasks don’t take a lot of time, but are so very insightful.  One of the most important things asked of the reader is to track our yelling triggers…this is where we really see who is to blame for our yelling…us!  There is even a worksheet to keep all our trigger tracking in one place!  Each day, we are given revelations, actions and tips… these are fantastic, not to mention very useful!  There are also quotes each day that are extremely pertinent to this journey of “yelling less, loving more”.  Each and every one of them could be a personal mantra.

I have been forced to look deep into myself during this journey.  I know now that I am the reason I yell…not my kids.  I’m choosing to react to them how I do.  Whether it is consciously or subconsciously, I’m making the decision to yell.

I have been forced to look deep into myself during this journey.  I know now that I am the reason I yell…not my kids.  I’m choosing to react to them how I do.  Whether it is consciously or subconsciously, I’m making the decision to yell.

  Most of the time, my “tank” is on empty.  I’m a pharmacist in one of the busiest pharmacies on the East Coast of Canada.  I have to give 100%+ every day at work and when I come home, my kids want even more of me.  I’m spent… I know I need to take care of me more, and I’m working on that…my gym membership has been bought and I’m working on adding more “me-time” into my evenings.  I know I have to give up on my self-pity for still being single after all these years…I have to love myself more, and remember that “I am enough”.  I have to embrace the little family I have and live in the moment.  I’m sure I won’t be alone forever, but until the time is right, “I am enough”!

I would love to say that I have been yell-free for more than a couple of days.  The truth is that I can’t seem to get past the third day.  But I keep trying!  My kids deserve it and I want to feel good about my relationships with each of them.  They are truly wonderful, loving children who are just that… children.  I can’t expect them to act like adults when they are 8 and 4.  Besides, I have to teach them how to become good adults, which means I have to practice better self-regulation.  Thanks to Yell Less, Love More: How the Orange Rhino Mom Stopped Yelling at Her Kids – and How You Can Too!, I have the tools and insight to be the mother I have always wanted to be.  I have enjoyed every moment of this journey, even the tears.  This book is so worth reading…I highly doubt there will ever be a “yelling parent” who doesn’t feel the same way after reading this wonderful book!

book-squareIf my story has touched you at all, please share this post.  One of my readers who shares this post will receive a free copy of Yell Less, Love More.  Do it!  You won’t be disappointed. And if you don’t win it, you can order it here!

* * *

Thank you “Island Mama” for sharing your very, very touching story. Your vulnerability touched me and will stay with me.

 

An Inspiring and Realistic Program for the Busy Parent who Wants to “Yell Less, Love More”

TORC_logo_blogTour3-2An Inspiring and Realistic Program for the Busy Parent Who Wants to “Yell Less, Love More”

Book Review and Blog Post by Melissa L.

As a mother of four young boys, Sheila McCraith found herself becoming the parent she never wanted to be: one who privately struggled with yelling at her own children. After a humiliating experience where she was overheard by another adult during a yelling episode, McCraith started her journey to becoming an Orange Rhino by starting her own personal 365-day challenge to stop yelling at her children. Along the way, she documented her experiences, personal revelations, and strategies on her internet blog titled “The Orange Rhino Challenge, My 365-Day Challenge to Yell Less and Love More.” McCraith developed the Orange Rhino as a symbol for her challenge; she explains that a rhino is a peaceful animal that, when provoked, displays aggressive behavior and charges. The color orange, symbolized warm and loving energy. On her blog, as well as in her book, McCraith provides many examples of how she uses the color orange as a visual reminder to curb her yelling and to use appropriate coping strategies. The blog took a life of its own as it resonated with many parents who found themselves struggling to curb their own yelling issues. This led McCraith to writing a book that offers struggling parents a doable 30-day program that offers realistic strategies on coping with anger and stress while parenting their children.

McCraith’s book, “Yell Less, Love More” is not a thick novel that parents have to spend hours pouring through before considering a program with the goal of yelling less at their children and building better, loving, and positive relationships with them.   An approximately 200-page book, it is laid out in an easy to read format with chapters broken down into daily sections that are not long; averaging about four pages, which is perfect for the parent who can spare five to ten minutes to read per day. Each section has a theme of the day, starting with a personal experience provided by McCraith that most parents will certainly relate to, and the section ends with the day’s revelations that provide a way for the parent to become more aware of their own anger issues and reactions. In addition to providing revelations at the end of each section, McCraith also provides action strategies, and tips of the day for the parent to use in order to develop better anger management and coping skills. In various sections, McCraith provides opportunities for the parent to journal their thoughts, feelings, and emotions as well as trigger tracking sheets at the end of the book. The book’s pages are attractive and colorful in fuchsia and two shades of orange which is consistent with McCraith’s Orange Rhino symbol.

Instead of doing McCraith’s daunting 365-day challenge, this book offers a flexible 30-day program that the parent can use as a guide.   The program is flexible; the parent can choose to proceed with it however they want. They can reset the yell counter back to Day Zero if they yell OR just stop the counter on the day they yelled and restart after a successful day. Also, it does not have to be a rigid 30-day program; some parents can just read through the book or just review the revelations, action strategies, and tips at the end of each section to gain ideas of how to manage their anger and stress. Other parents can choose to read each section on a daily basis if they want to follow a structured 30-day program.

I discovered McCraith’s blog through another parenting self-help blog and as a parent who struggled daily to curb the yelling, I was immediately inspired by the personal experiences that she shared as well as the strategies she used to yell less.  As I read about her experiences and sharing of her own painful emotions when yelling at her children, I felt like I was reading about myself.   The various revelations she provided at the end of each section were common sense observations which resonated with me, especially the revelation she made about parents who tend to avoid yelling at their children in public because there was an audience watching, but the most important audience were the ones inside of our very homes: our children who are the very things we love the most. We are their role models and we need to show them appropriate behaviors that we want them to use. I believe many parents will find this an easy book to relate to and be able to use many of the easy, common sense strategies and tips that are offered to help them “Yell Less, Love More.”

“Yell Less, Love More: How The Orange Rhino Mom Stopped Yelling at Her Kids–and How You Can Too!” releases October 15th but is available now for pre-order! Click here to pre-order it at your favorite store! 

 

4 Ways Not Yelling Helped me Manage my Shoulder Injury (For Real.)

Hi everyone! So I hurt my shoulder pretty bad and haven’t been able to write much for that reason (and a few other big ones. Check out my last post. I had to write that and my shoulder was fairly pissed with me afterwards.) Anyway, I have a lot on my mind and a lot of things I want to share so I decided to get creative, to find a new way. Here it is: my first video blog! It isn’t professional or edited or planned, just me being me. Enjoy!

The Truth Is…I’m Terrified.

I learned on my Orange Rhino Challenge journey to stop yelling that if I ignore feelings, especially the ugly ones, they bottle up which stresses me out which triggers me to yell (or want to yell.) So while you might think this post has nothing to do with yelling, it actually has everything to do with yelling. Here are some ugly feelings I have had that I need to get out before a yell does. 

So…as many of you have noticed, I have been basically radio silent for the last three weeks. The first of those I was on vacation and pushed myself to really detach from everything so that I could really enjoy the last week of summer with my family at my favorite place: the beach. Even though two kids visited the emergency room (horrific rash and popped ear drum) it was still a wonderful, beautiful, peaceful week. Sunrise

We returned the Saturday before Memorial Day. We returned tan, rested, happy and rejuvenated. Then Memorial Day happened and well, Memorial Day kind of sucked in our house.

As many of you know from the first year of my Orange Rhino Challenge, my youngest son (#4) suffered from intense seizures from age 14 months to age 18 months. (read here) Thankfully, a brain MRI showed no brain tumor.

Party at my crib! 9:00, 2+ hours past bedtime!

Party at my crib! 9:00, 2+ hours past bedtime!

And thankfully his in-hospital tests two weeks before Christmas that year showed no signs of epilepsy. On February 6, 2013, the day I celebrated one year yell-free, he had another seizure, the worst one to date. The medicine to stop it didn’t even work. He didn’t come to until he received oxygen at the hospital. Thankfully, a few days later, we discovered what we believed to be the source of the seizures: black mold underneath the cabinets where all his toys were stored. We immediately removed the black mold. Since then, #4 had high fevers but never again had a seizure. A coincidence? We thought not. Oh how we felt certain that there was a correlation between the two and that since the black mold was gone, his seizure history was well, history. In fact, this past February 6, 2014, we celebrated one-year seizure free.

I am sure many of you recall my emotional post about how I just couldn’t stop crying that day (read here.) I felt such, such relief to have the, what were determined to be, febrile seizures behind us. I felt like I could breathe again. That I could go out without my phone attached to my hip for fear a seizure would strike and I would have to rush home. I felt that I didn’t have to watch him as closely on the jungle gym out of fear that he would have a seizure while playing. I felt that I could turn off the video monitor during nights when he had high fevers because I felt positive he wouldn’t have a seizure. I felt that I could finally stop worrying, or well, at least worry less because I am a mom and I will always worry.

And I felt that I could leave my fears behind.

My fears of watching him have another dreadful seizure. My fears of him seizing in his sleep (again!) and choking to, well, you know. My fears that I would somehow miss the signals of an oncoming seizure and therefore not be able to stop it in time (like the last one.)

Oh, oh it felt so great to leave all those fears behind. So much so that on the Sunday before Memorial Day, a few days shy of 19 months seizure free, I turned to my husband as I put medicine away and said, “Hey babe, #4’s emergency seizure medicine is past date and so we can throw it out, don’t you think?” Yes, oh yes was I certain we wouldn’t need it. And yet, the cruelest, ironic, surreal, unbelievable moment occurred not 19 hours later.

#4 had a seizure.
An absolutely awful, horrific, seizure.
The worst to date on so many, many levels.

Per #4’s request, I put him down for a nap at noon. What three year old asks for a nap?! He felt warm so I took his temperature but the thermometer said 99.6. And well since he hadn’t had a seizure with fever in 19 months, I didn’t think twice. I didn’t even think about it over the next two hours for the other boys were out with my husband and I had the house, the peaceful, quiet house, alllll to myself. It was a guilty pleasure and I embraced it whole-heartedly. In fact, so much so that two hour nap window passed rather quickly. I looked at my watch, thought, “Hmmmm…he should be waking up, I’ll go get him.”

And I did go get him.
But he wasn’t waking up.
He was in a full-blown seizure.

Biting his tongue. Staring into the distance. Shaking on one side. Not responding when I said, “Mommy is here.” Not responding when I said his name. He had even peed himself which he has never done in a seizure. I normally respond calmly to such situations but not this one. It scared the crap out of me as it caught me so off guard. I called to my husband who had thankfully just arrived home and then called 911.

The police arrived five to seven minutes later and I immediately asked if they had oxygen as I knew that was what he needed to end the seizure. They did and they hooked him up to a tank right then and there. He continued seizing. Normally after the oxygen he snaps out of it. He didn’t. The paramedics arrived a few minutes later and #4 still wasn’t responding. By now, I estimate that he had been seizing at least fifteen minutes…or longer. The longer the seizure (even if febrile) the worse. It took another five minutes or so for him to come to. But when he did, oh, oh it wasn’t the same as the past seizures.

DSC_0054He still didn’t respond when I said his or my name. He couldn’t grab my hands and when I held his, he couldn’t squeeze. He didn’t turn towards me when I said, “Who loves you soooo much?” He didn’t do anything. His eyes were wide open and it was clear the seizure was over, but oh, oh the effects were strong, stronger than before. In fact, he didn’t talk for two hours after. He didn’t walk normally for at least a day. In the past, he was back to a crazy toddler within twenty minutes of snapping out of it.

Folks, there is no sugar coating it, it sucked. And to be honest, I blamed myself and I still kind of do. Why didn’t I check on him more? Why didn’t I stay with him? Why did I ignore the moan? Even though I know it wasn’t my fault, even though I know that I couldn’t have stopped the seizure, even though I know I did nothing wrong, I still blame myself. I would do anything to have made that seizure not happen, and not just because it was an intensely awful experience for my son, but because in the after effects, in the moments where he wasn’t himself, I felt, no truly, deeply feared, that I had lost a part of my child.

The rest of the week #4 suffered from a 105-degree fever and virus. We were on emergency room watch because not only wasn’t he eating or drinking, he was also quite lethargic and complaining of neck and head pain. It wasn’t a fun week. He has recovered from it all and is happily at pre-school, but I haven’t recovered. Because I know what is next.

This Wednesday I will take him back for more brain testing. There is a growing concern that because #4’s febrile seizures are so long and complex (mirroring that of a temporal lobe seizure) that he is in the small percentage of children for whom the febrile seizures aren’t the cause of, but rather a strong predictor of, epilepsy. As our pediatric neurologist said, “We need to know if he is going to have a seizure while playing by himself or in his sleep.” Yes, 4 out of 5 of his seizures have been in his sleep. How much does that suck?! Talk about scary.

It has taken me two weeks to share this because the seizure experience was so bad that I have been walking around in a state of denial for two weeks. So bad that I just feel numb. So bad that I am not even talking about it which really, is just not like me. I just don’t want to think about that moment, I don’t want to think about the fact that all my old concerns are now real and alive again. But they are. They very much are. I am back to the world of living on seizure alert, of worrying that another seizure will happen and that like #4’s past, the next one will be longer and more intense than the one prior. Even if his tests are clear Wednesday and show no signs of epilepsy, I now have another year ahead of me to be on alert. And that my friends, is immensely overwhelming and scary, for both of us. For all of us. And well, I am not even writing about the immensely overwhelming feelings I have about what if the tests aren’t clear?! What if he does have epilepsy? The truth is folks, I am terrified about it all, about having to live on alert again, about what the future tests hold. I know I “can’t” worry about the future, but gosh is that hard right now.

DSC_1194And yet, for the first time in two weeks, just from writing this post, I feel slightly more confident that I can handle it, I feel slightly less terrified. Yes, my mind just went to The Orange Rhino Challenge. How do you like that 😉 A year not yelling seemed so daunting. But I did it. I survived it, I managed. How? I went moment by moment, day by day, and I did it with support. And that is what I will do now, here, in this situation. Moment by moment, day by day, I will celebrate being seizure free and I will seek support from friends, family, and doctors to get through this period. And we will get through it. We will. We will.

5 Back-to-School Supplies (and tips) to Yell Less

We have exactly two weeks before school starts. (Yeah, my town likes to start as close to October as possible so that when it snows all of December, January, and February we can make sure that we are still in school in June when it is gorgeous out and the beach beckons.) Sorry for the sarcasm. Nope, not bitter at all that our summer started really late this year and as a result went way, way too fast! Not bitter at all.

Color HappyAnywho, so with school around the corner my boys and I hit the local Staples to buy school supplies. We are a little color happy in this household and not just because of The Orange Rhino! It all started when my now 5 year old had Mononucleosis (a.k.a. the kissing disease) at the age of 2 ½ ! I had three kids at the time and immediately created a color system so that no child would make the mistake of drinking from the wrong sippy cup. Mono had wreaked havoc on one son, absolute havoc, and I was not about to have my other two sons go through the same misery. So, #1 became “Red”, #2 “Green” and #3 “Blue.” My system worked flawlessly and not only did no one else get Mono, but everyone loved having their “own” color and they naturally started applying the color system to other things too. Jackets. Backpacks. T-shirts. Toys. Oh did a color system make life simple.

So naturally when we went school shopping, #1 and #2 had to find their colors. We dug through dual-pocket folders to find red and green ones. We dug through bins of three ring binders to find red and green ones. We dug through bins of composition And we went up and down the pencil and eraser aisle to find, you guessed it, packs of just green erasers and packs of just red erasers. And yes, that was an absolute fail! But for the most part, we succeeded in finding the right back to school items in the right colors.

As we were shopping and searching for the right colors, I was fighting the urge to snap really nastily while saying wrong things like, “Just hurry up already, it doesn’t matter, it’s just a folder!” and “For the umpteenth time, put your hands in your pockets and stop touching your brother and everything else in site!” I was just not in a calm, relaxed, let’s enjoy this moment together mood. You see, not only were my boys fed up with each other that day and trying so very, very hard to successfully piss the other one off, but also the store was packed with people and the aisles were full of extra bins leaving little wiggle room. Every step I took was, “Excuse me, I just need to squeeze by.” Yeah, it was a really awesome shopping experience, especially for someone like myself who does not like crowds. The whole back to school shopping experience had me irritable, impatient and well clearly, wanting to yell at my boys for no real reason!

Finally (thankfully!) we got to the last item on the list: black marble composition notebook. Easy peasy, lemon squeezy. As we approached I noticed something I didn’t notice last year. There weren’t just black and white notebooks, there were colors. Yee haw! As my boys started the dig for red and green (why would they ever be on the top of the huge, gigantic, boxes?) my eye caught something else. An orange composition notebook. Well, you all know how my mind works. As in, it always thinkgs of The Orange Rhino Challenge and it often makes the oddest connections and makes no real logical sense! Here is a perfect example.

Orange composition notebook. Hum. Orange makes me think of The Orange Rhino Challenge. Hum. I could write in an orange notebook when I want to scream. Hum. Wait. What other back to school supplies are here that I could buy to help me keep from screaming over the next few weeks as we transition back to school and everyone is cranky and tired and not wanting to walk out the door? What do I need for my back to school backpack to help me learn? To help me practice not yelling?

Here is the list I came up with as my boys rummaged through the box looking for red and green notebooks. (I say rummage because we were late shopping and what mostly remained was yellow and black!)

 

5 Back to School Tips1. No. 2 Pencils: Scribble out anger with a No 2. pencil instead of screaming out orders. Seriously. Try it. It is such a good release! Added bonus? Then erase the frustration away. Literally!

2. Composition Notebook: Tear out paper from a composition notebookand crumble it up instead of causing your child to crumble to the ground in tears. Or write down your anger on paper and then throw it out. It is all oddly satisfying.

3. Water bottle: Chug water from a water bottle so you swallow the yell and literally cool down. My kids are all instructed to bring a water bottle for their desk. Why shouldn’t I do the same? Instead of open mouth insert foot, open mouth insert water bottle (okay, straw, but you get the point!) When I have to swallow something, I have to slow down so I don’t you know, choke! Drinking slows me down and therefore calms me down. Well, except coffee. That can get me all sorts of revved up. Again, water bottle!

4. Post-It Notes: Yes, I know, this is an old one but honestly, it has worked for me since day one two years ago and it works for me now! Grab an orange Post-It note and write a love note to your child instead of yelling a mean message.  Last year I wrote love notes and put them in the lunch bags. It is amazing how just thinking positive thoughts can transform a mood instantaneously! You can also use those notes to postpone yells by sticking them up in high yelling zones (backpacks, car, door that leads to school) as a warm reminder to Yell Less and Love More. My house may or may not be decorated with orange post-it notes in two weeks when we are trying to get out of the door on time!

5. Orange Double Pocket Folder: Fill an orange double pocket folder with sheets of paper covered with favorite inspirational sayings to stay calm (I can yell less, I love my kids, I will send my kids to school with lunch and love not yells, I just need to stay cool until 8:15, that’s nothing!) as well as top tips to not yell that have worked for you (yelling into freezer, singing, talking to yourself.)

In case you are wondering, yes, I did pick up some back to school supplies for myself that day. They are currently stored in the “I will not think about school today because it is still summer” section of the dining room along with my boys’ supplies. But come 10 days from now, as we start to pack the backpacks, I will be pulling them out and placing them on the kitchen counter, ready for me to grab at any moment if the stress of the first day of school (week really!) gets to me.