Self-Advocating Against Bullying

The bus got home before I did, but the kids were really surprised to see me home so early.

I asked my daughter if she wanted to talk about what happened and she was more than willing to share her experience with me.

It started after she explained to the gym teacher that she would not be able to participate in gym due to her leg hurting.  New school year, new gym teacher, damn it to hell, I forgot to email this gym teacher about my daughters accommodations and medical condition.  At least, instead of sending her to the library to write a summary of an article about a sports figure (story for another day) the gym teacher told my daughter she could remain in the gym and be a score keeper.

Halfway through the class, one student loudly asked “Why isn’t she (referring to my daughter) playing with us? What is she? Disabled?” That stung my daughter, but she’s got thick skin.  She’s endured years of rude and ignorant comments and ogling stares from friends, strangers and even family members. So she chucked it off as just another dumbass.

But then, (you know there is going to be a but then), moments later, a second student passed her (while still in the gym) and said “Hi disabled girl.”  Then she lapped around again “Hi disabled person.”  And then again “Why do you always have a broken leg?”  And again.

My daughter tried to retort with witty responses, but it was pointless.  She felt humiliated.  Thankfully the period ended and she shuffled off to lunch where another minor (unrelated), but upsetting incident occurred.  At this point she admitted that she was ready to burst into tears.  She had to do something.  She tried to text me, but she could tell from my reply that I was busy.

[ I cannot tell you how devastated I am that I was ‘too busy with work’ to be there for my child.  #momguilt #workingmomguilt #worstmomever #bullyingmyself]

She gave herself a few minutes to compose herself and marched her self-advocating, “I won’t be a victim” self to guidance.

After getting all the details, I envisioned myself going to school, finding these students and re-enacting a scene from The Hand that Rocks the Cradle with Rebecca DeMornay when she threatens to rip Roth’s (the school bully) head off if he ever bothers sweet little Emma again.  Yeah, I could totally pull a Peyton!

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WARNING – RANT:

While that is notable that the guidance counselor switched her gym class, I do take issue with this ‘remedy’.  We are removing my child from her class – this can be perceived as protecting the child, or as casting her away so others won’t be disturbed by her ‘disability’; or worse yet, teaching her to run away from a problem.  However, I will not make an issue of this today because the new gym class is with the gym teacher she had last year who understands her condition and abilities. The big plus is that she already has friends in that class so she will be more comfortable.

End of rant.

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Today My Child was Mocked and Called Disabled

My heart today.  It hurt bad, but not as bad as my daughter’s.

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I was at work and was in the middle of introducing my company’s employee handbook to a new employee when I received the text above.  Moments earlier, I had just reviewed our company’s strict electronic device policy; hence why my daughter received my short reply “Let’s talk later”.

I figured I would text her back once I got back into my office.   Forty-Seven minutes later my phone rang and the school’s number displayed.  I casually thought to myself that it would be my daughter’s school guidance counselor asking my permission to change her gym class.  The conversation was not at all what I had expected.

The guidance counselor began with a gush of apologies and a promise that she would gather more information. Looking back, she must’ve thought that I already knew.

She said that while at gym class, two other students called my daughter disabled. Repeatedly.  Mockingly.  The guidance counselor (GC) did not get into too much detail other than my daughter was subjected to this despicable treatment and there would be consequences after an investigation…statements from witnesses, blah, blah, blah.  All I could think was ‘Great, on top of the humiliation, there were also other witnesses to this humiliation my daughter just experienced.’  The GC was proud of my daughter for going to guidance with this issue rather than keeping quiet about it or taking matters into her own hands.  The GC will oblige my daughter’s request to change her gym class.  Blah, blah, blah.

One thing the GC did say that I felt was empowering was that she reminded my daughter that having a disability does not make her disabled.  Now if we could only teach that to the rest of the world!

My mind was swirling. Oh my poor girl!  She had to endure being called disabled by two students. All because she sat out of gym because her leg, affected by Klippel-Trenaunay Syndrome, was hurting her and gym participation was not in the cards for her.  And two students thought it was ok to call her disabled. While I was listening (because I was speechless) to the GC rattle on, I texted my daughter “Who are these two little bitches?”  I got no reply.

I was in autopilot.  I said “Yes, Umhum, Okay, I see, and Thank You” to the GC.  I heard her promises of getting to the bottom of it. I was absorbing but not yet processing or thinking.

After taking care of some other business at work, I went to my car and sat for a long while and stared at my phone.  Why wasn’t my daughter answering me?  Why didn’t she text me that she was being bullied?  So many questions….

I called the GC back and admitted that I was yes-sing her to death when she first called.  I was absorbing info.  Now that I had time to process, I had questions.

  1. Where the f&*% was the gym teacher?
  2. What role did the gym teacher play prior to the bullying from the other students?
  3. Why would my daughter text me that the teacher was mean?

The GC had no answers because she had yet to speak with the gym teacher.

I shared with the GC that while I am very proud of my daughter for advocating for herself and going straight to guidance about this very serious matter, I am concerned at how upset she must’ve been to summon the courage to go to her office.  My daughter must have been really pissed off to go tell the GC about what happened before telling me.  I cannot express how proud I am of her, but at the same time, it pains me that the level of pain she was experiencing was the motivating factor behind her “courage.”

I went back into work, cleared my desk, packed up my stuff and tried to beat the school bus.  I wanted to be home before she was.

Mom’s Back to School Anxiety Checklist

  • Forms…too many to keep track of
  • Doctor notes…..
  • Medication forms…..
  • 504 meetings….
  • Emails to teachers, guidance counselors, school psychologist, principal…the Pope…
  • Follow up doctor appointments because they haven’t seen your kid in 3 months and cannot fill out the medical forms without seeing them first.

*Keep kids calm.*

  • Schedule a celebratory luncheon with other moms (that’ll never take place) to celebrate surviving “2018 — The Summer of Fortnite”.

In my opinion, Back to School Day should be celebrated, treated and accepted as a holiday. And a paid day off from work!

Teenage Back to School Anxiety for My Teens with Medical Conditions

Ah. It’s back to school season. Tis the season that heralds anxiousness in all its glory for most teenagers.

The first day of school is right around the corner and anxiety levels are starting to ramp up in my house as the twins start their 2nd year of high school.

Traditional back to school worries include the very dramatic:

  • Not one of my friends are in any of my classes!!
  • Or finding out that the teacher of your favorite subject is the equivalent of the dark and sinister Professor Severus Snape from Harry Potter. Or perhaps Voldemort himself, or his just as evil twin sister.
  • Or seeing that the school has assigned you to the same math class twice, no lunch and a regular core class instead of the Advanced Placement class you’ve worked hard so for.

We are currently “stressing out” because some of the teachers have yet to post their supply list. Really guys? We’ve been at this for 11 years. All we need are the basics: binders, pens, paper, vodka, folders, calculators, tequila, index cards, staples…..

What??? Don’t judge. Moms need supplies too.

Amid all the excitement and hubbub of how many classes the twins will be in together (none, if I had my way); or how one of my son’s friends will have a total of 5 classes with one or both twins. The subject of Physical Education class came up. I heard the inevitable sigh of exasperation in my daughters exhalation.

I instantly knew what she was going to say before the words fell from her lips.

My heart sank.

“Oh great. We have a new P.E. teacher. This means I have to explain everything all over again.” And then came the solemn look in her eyes. “And now I have none of my friends in my class to help me get around. What if I need to use my wheelchair?? Or worse, my crutches (oh those dreaded crutches)!! There is no one who will open the classroom doors, help me with my backpack. And the teachers are going to make a big deal about fitting my wheelchair into their classroom. And now I have to deal with the stares from new people, and I will have to explain everything all over again. Can you try to not schedule so many appointments during school hours? I miss too much school. And then everyone asks why did you leaving school early. And then I have to explain. Aaarrrgggg.”

In an effort to try to calm his sister’s nerves “Well, I thought you said you’d never use the wheelchair in school again anyway. You said you’d rather stay home in pain than go to school in the wheelchair. So why are you complaining?”

But she was not having it from him. “Because….the teachers are going to read the 504 and start asking questions and I hate talking about it.”

Of course my Mr. Denial announces: “504’s are stupid. I don’t see why we need them anyway. We know what to do for ourselves. Mom and the teachers make such a big deal out of them. They are so annoying”.

Now I’m offended: “Hey! What’s so annoying about 504’s?

Soon to be grounded twin son: “You are. Ummmm, I mean all of it: the accommodations I don’t need: the extra attention I don’t need, or want: the big deal everybody makes about it. It’s all stupid and annoying. Why can’t you just remove it?”

For the win, by the twin girl: “No! Don’t take it away!! Just because you don’t use your hearing aid the way you are supposed to doesn’t mean we don’t need it. I need it! You need it. You are so annoying.”

Soooo close to being grounded twin boy: “No we don’t. We can get through school day without it. Nobody understands our conditions anyway. Nobody listens. It’s just all a stupid waste of time.”

I assured my guys that I will email their teachers before school starts and ask the teachers to direct their questions about their conditions to me or to request a private meeting with the school nurse and guidance counselor. And I doubly assured them that we will not be removing any classroom accommodations despite how unnecessary they think they might be.

After some grumbling as we niches in cookies, I heard my twin boy who didn’t get grounded mutter: “I just hope my lungs don’t get sick again. I don’t want to end up missing half the hockey season again.”

So this is what back to school anxiety looks like in my house…here’s to a new school year! Now, if I can only remember where I put that bottle of vodka….

#backtoschool #klippeltrenaunay #hearingloss #hearingaid #schoolaccommodations #chronicpain #sensorineuralhearingloss #tinnitusinchildren #tinnintusinteens #

Tiny Miracle? Hoping the Other Shoe Doesn’t Fall.

For many months I have agonized over the decision to allow my daughter to try a controversial drug to help her manage the pain in her KT leg.

We were told that it would take time to see results.  Typically, most patients feel relief 4-6 weeks after starting the medication. We were told that this is not a miracle drug.  They weren’t even sure if she was receiving the correct dosage; or if the medication would even be effective at all.

We were very skeptical about this new and expensive (as it is not covered by insurance)  journey, but we felt we needed to try.  We have (unsuccessfully) tried everything else to manage her pain.  We have tried other interventions, medications, surgical procedures, reiki, physical therapy, etc. All to no avail.  I often wonder if some of these other interventions caused more harm than good. In some instances I rejected certain proposed interventions, such as low dose chemotherapy.

Currently are just under 2 weeks into taking the new medication.  Words cannot express how I feel about how this drug is changing my daughter’s life, for the better.

FEAR – fear is the first emotion I am experiencing.  I know, weird, right?

Let me explain. I am fearful that the medication will stop working.  I am fearful that she is enjoying her new-found freedom just a little too much and may be pushing herself too hard to have fun. I am scared she may crash and burn.

But, OH MY JOY! <– look! A good emotion!

HAPPINESS for her, my heart and my ears:

  • “WOW! Mom, I was actually running today. With my friends!  It felt so good to not have to walk, or have my friends wait for me to catch up to them. “
  • “Now I can have FUN!”
  • I asked her why was she limping “Because my whole body hurts from running yesterday.  It’s not just my usual leg pain this time.  But its okay, it feels so good because I am using muscles I haven’t been able to use in a long time.”
  • “I mean, my leg hurts a little, but Mom, just a little.  If I tried to do all this running around last month, I would be dying of pain.  But look, yes, I mean, it is swollen, but it doesn’t hurt as much as it usually does.”
  • “I can’t believe I did all this running and the pain isn’t that bad.  I mean, most days I wake up with this kind of pain and my day just gets worse.  But now I know what it is supposed to feel like to wake up with no pain.”
  • “I can feel how out of shape I have become because everything hurts, but now my body is working again!”
  • “It’s miracle that I can do these things again!

Anyone living with Klippel-Trenaunay Syndrome, or with any form of chronic pain can attest that on most days, a few hours of fun usually results in days of pain and eventual recovery.  It seems that there is always a heavy (painful) price to pay whenever she seems to have fun.  My child has been experiencing that horribleness. But this new medication seems to be turning the tide for her and offering new hope.

I am trying to let go of the fear of the other shoe falling.

I need to embrace this moment in her life.  Her moment of pain-free joy.  I love the smile on her face.  I love watching her flex her new-found muscles, and freedom.  I love my happy (and for the moment, pain-free) girl.

I pray that this wonder drug will continue to help improve the quality of her life.

When You Find the Right Pediatrician, it’s Like Magic

I fired my children’s first pediatrician when they were 13 months old.  The pediatrician was fantastic – so long as you had a healthy, full term baby.  I did not know this about him when I initially entrusted him to care for my premature babies.  Both he and his wife (who worked with him) were very much laid back in their care.  I found them both to be very condescending whenever I would bring up issues and concerns.  I think they truly did  enjoy watching babies grow, but they didn’t seem to know or want to help those babies that needed help or extra care.

The pediatrician’s wife was like the high priestess of La Leche League – and very much of the “shame on you if you don’t breastfeed your babies” mindset. Don’t get me wrong, I wanted nothing more than to breastfeed my dumplings, but after 6 weeks in the NICU, we never bonded in that way.  My breast pump and I were inseparable for the first 10 weeks of my children’s lives. Every 3 hours I fed one twin, then other twin and then I pumped.  It was like feeding tr, every 3 hours, every day, for 10 weeks.  I pumped until the twins were consuming more than what I could pump. It did not make sense for me to continue pumping if the amount I was pumping was less than half of the amount of fortified formula that was added (and needed to sustain them).   As a side note, I was also admonished for continuing to work despite having premature twins at home. It wasn’t like she was dipping into her pockets to pay my mortgage. But I digress.

The 1st pediatrician and I had an epic falling out after he misdiagnosed my son, for the 2nd time with a major illness.  The pediatrician first misdiagnosed my son’s RSV (Respiratory Syncytial Virus) when he was 9 months old.  Two months later, he misdiagnosed my son’s Kawasaki Disease.  Years later, I would realize that he also missed the sleep apnea diagnosis too.  And we won’t even discuss my daughter’s vascular malformation.

I was beyond furious that fateful day.  I was distraught.  I was angry!  This man was endangering the wellbeing and lives of my children!

After bitter words were exchanged in his office, I stormed out of his office (with my sick boy in my arms) and drove to straight to the hospital where my children were born (prematurely) and well cared for in their NICU.

Thinking about it now, I must’ve been quite the sight leaving that office. I remember balancing two, year old toddlers – one child incredibly ill in my arms and the other bubbly and cooing in her car seat. My son was lethargic from the relentless high fever that raged in his body for days. He was also precariously dehydrated. But here I was trying to balance the twins, a diaper bag, my purse and my uncontainable rage.

Upon entering the emergency room, the pediatric hospitalist seemed to be expecting us. Without examining him, and without hesitation, she immediately announced “It is so very clear to see that his child has all the classic symptoms of Kawasaki Disease.  He needs a transfusion. STAT!”  I was amazed!  How did she know?  But there was no time for questions.  She quickly pointed out the critical symptoms he was clearly experiencing.  He was rushed to the pediatric unit and given a lifesaving IVIG transfusion.

Once my boy was stable, I toured the hospital and visited all the specialists we had seen up until that point. I started with my high risk specialist who carefully monitored me during the first trimester, and worked my way back to the NICU and took a poll.  I was looking for recommendations for an excellent pediatrician.  At first, everyone was reluctant to provide a referral (it’s against hospital policy), but after hearing how the first pediatrician misdiagnosed my son with a 2nd major illness in less than 2 months, they were willing to bend the rules and start coughing up some names.

I was down to two solid contenders.  I called both offices to schedule interviews.  I was no longer willing to just take someone’s word.  I needed to interview the doctor, I had some serious questions!  Most important, I needed to feel comfortable with the doctor whom I am trusting to help me keep my children healthy.  It turned out that doctor #2 did not accept any form of health insurance.  He was strictly private pay.  Judging by the fact that this was my son’s 2nd hospitalization in two months, choosing doctor #2 would have been the fast track to the poorhouse.

I was worried that doctor #1 might be of the same mindset as my newly fired pediatrician.  I was nervous to meet him.  I was asked to schedule an appointment to meet him after my son was discharged from the hospital.  I was not comfortable with that directive, but I had no choice.  In the meantime, I was asked to have the fired pediatrician send my children’s medical files to this new doctor for review.

The following morning, a doctor entered my son’s room with a broad smile and cheerful hello.  He walked in and asked me “So how is my boy doing?”  as he started perusing my son’s medical chart.  I stammered “Not well, he is still running a fever of 105, he is so very weak and the transfusion doesn’t seem to be working… I’m sorry, but who are you?”

He put the chart down and smiled and said “I’m your new pediatrician. I came by to say hello and meet my new boy!  I would like to see you the day after our boy gets home.  Don’t you worry darling, you are in good hands.  He’s going to be fine.  Now get some rest and I will see you in a few days.”

I was in shock!  This doctor made it a point to come to the hospital, find us, introduce himself and welcome us.  Right at that moment, I felt like I had just hit the jackpot, at last, a caring doctor! He was like a male version of Mary Poppins.  He made everything better!

That introduction happened in early 2004.  After all these years, he continues to make everything better.  He is a great doctor who cares very deeply for his patients.  He has helped us navigate all the illnesses, syndromes and diseases my children have been diagnosed with.  And when he doesn’t have all the answers, he knows who to send us to help us out.  But most importantly, he listens!

…all the better to hear you, dear…

Its been 3 years since our son was diagnosed with sudden onset sensorineural hearing loss and tinnitus.  Its been 2.5 years since we acquired his hearing aid that serves as a tinnitus masker.

The tinnitus masker was a life saver for him.  In the beginning he wore it all the time.  He was not timid or embarrassed being seen with it.  He knew it helped and he didn’t care what people thought.  Very few people commented on it, in fact.  Like everything else, over time, he grew accustomed to the omnipresent ringing in his ear and learned how to block the sound and prevent it from affecting him.  His annual checkups have been uneventful, the hearing loss unchanged.  Even the evaluation he had this past April.  One time he thought he was hearing the tinnitus in his unaffected ear, but it was unfounded.

What began as an “observation” on his part, gradually, but steadily became intense concern.  He merely commented that he thought the frequency in his tinnitus had changed.  Every day he was more vocal about how distracting the ringing was at night and how it interfered with his sleep.  By the end of the month, he was now asking me to please make an appointment to get his hearing re-tested by his audiologist.  He had tried in vain to get the hearing aid to help, but the frequency was so disparate that the hearing aid was in effect, useless.  It would need to be re-calibrated to match the new frequency in his head.

My son has been super-mature and super-responsible with this hearing aid since the day he got it.  He had never misplaced it.  At all times, he always knew where it was (even if it didn’t belong somewhere) he always knew where it was.  Up until a day or two before his appointment, he was still trying to use it at night.

About one hour before his scheduled appointment, he called me at work to ask me if I had seen his hearing aid.  Naturally I was upset.  How could he not know where it was? He ALWAYS knew where it was!  He and his dad looked for the hearing aid relentlessly.  All to no avail. **POOF**     **GONE**

The audiologist evaluated him without the hearing aid and confirmed his suspicion.  The frequency of the ringing in his ear did change, but so did his hearing.  Three short months ago, he fell squarely into the category of having moderate hearing loss.  Now his hearing loss fell into the moderate-to-severe spectrum.  I won’t lie.  I cried.  A lot.

So now we are waiting for the replacement hearing aid.  My son and I have had intense conversations about what his life is like with hearing loss and tinnitus.  It is hard for someone who doesn’t live with hearing loss or tinnitus to understand.  Conversely, I can only imagine that it is difficult to explain if it is something that you have become so accustomed to that you hardly recognize it for what it is.

We have been sparring about his ability/inability to hear properly.  Because my son has adapted to the changes in his hearing, he keeps telling me he can hear just fine.  In fact, he has told me that *I* have the hearing problem, because I am not listening to him.

In an effort to understand how he hears, I took a deep dive into educating myself about sensorineural hearing loss and tinnitus.  I scoured the internet to gain knowledge. I think I finally learned how to decipher the hieroglyphics of the audiogram.  I came across a wonderful website, http://www.hear-it.org where you can hear what it is like to have hearing deficits.  Impressions of Hearing Loss

Thinking that I struck gold, I asked him to listen to the various sound files of hearing loss and tinnitus to see which matched his.  He listened with interest, but in the end said that none of the samples were comparable.  He asked why was I bothering to look at websites like this.  I explained that I love him and I want to help him.  But first I want to understand what he is experiencing.  If I can better understand what, and how he hears, maybe I can be a better advocate for him.