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On the Failures of Triage: When Mom’s in Short Supply

I found this in Bronwyn's room one day after school.

I found this in Bronwyn’s room one day after school.

Triage tri·age (tr -äzh , tr äzh ) n. 1. A process for sorting injured people into groups based on their need for or likely benefit from immediate medical treatment. Triage is used in hospital emergency rooms, on battlefields, and at disaster sites when limited medical resources must be allocated. 2. A system used to allocate a scarce commodity, such as food, only to those capable of deriving the greatest benefit from it. 3. A process in which things are ranked in terms of importance or priority. –thefreedictionary.com

When it comes to loving, nurturing, and meeting the needs of one’s children, the term “triage” doesn’t come to mind. No mother holds a sleeping baby in the wee hours of the night and ever imagines a reality in which that child’s needs rank below another’s. I certainly didn’t.

I know differently now.

On the battlefield, triage is a necessity. It’s a cruel necessity, but it saves the greatest number of lives. When there aren’t enough medical personnel and beds, you simply have to determine who needs care the soonest. But, like all the hard decisions in life, the truth is that triage – being subjective – sometimes fails. Sometimes, the fellow you thought could hold off for a couple of hours has a heart attack in the waiting room while you are tending to a trauma victim.

When you have a special needs child and typical children, triage becomes your new reality. No, it isn’t triage in the life-saving sense, but it is in every other way that matters. If you must choose between gymnastics lessons for one and speech therapy for the other, you pick speech. And, if your typical child is having problems organizing her room, that problem gets trumped by the autistic child’s penchant for throwing household objects. No, it isn’t fair. It just is. In the ER, the limited resources are beds, imaging, and experts. In the special needs family, they are mom, dad, time, money, and energy. You’d like to think that – as a mother – you are limitless. But that’s a lie we tell ourselves. The only thing a mother has without limitation is love. Unfortunately, children do need more than love.

My little girl is six years-old. Bright, enthusiastic, silly, and sweet. And, because she loves playing with other children and left kindergarten reading at a third grade level, I thought she was okay. Yes, I knew that her father has ADHD. I knew that it is statistically more likely in siblings of autistic children. I knew that she is described by so many as “high energy”. But – compared to our autistic child’s global developmental delays, meltdowns, and busy therapy schedule – her issues didn’t seem like problems.

But they were.

This past summer, it started to become obvious something wasn’t right with her. Removed from her structured school schedule and cooped up in the house most of the time, she became a child who was very difficult to live with. She began to throw tantrums that were off the scale. Our household became a very stressful place to be. It was as if she had a motor attached to her that never needed recharging. When she spoke, she shouted. When she sang, she screamed. Her play was frenzied. She demanded constant attention – to the point of deliberately annoying us to get it. And she couldn’t attend to even the smallest task by herself. What began to really worry me, however, was that she seemed oblivious to the reactions of her same-age friends. She was annoying them with her outbursts, and she didn’t even realize it.

At first, I thought she was just feeling neglected and acting out. I made a concerted effort during the summer to take her on mommy-daughter days out, trips to the library without her brother, extra time spending the night at her grandmother’s, and anything I thought would make her feel extra-special. I even had her tested for gifted, knowing that some gifted characteristics can seem like hyperactivity. But the days out became unpleasant memories of pulling her off of store displays, repeated pleas to lower her voice or stop kicking someone’s chair, and more tantrums. Her grandmother began to voice concerns about Bronwyn wearing her out. She couldn’t sit still for the gifted screening. And the library? [Insert hysterical laughter here.]

I waited until school started to see if it would help. It didn’t. And then the notes started coming home. Red cards pulled. Trips to the principal’s office. Sitting out at recess to finish assignments. She was coming home sad, angry, and confused. And, as soon as she walked in the door, she bounced off the walls – almost literally. One day, she came home upset. She said that two of her friends now didn’t like her. Apparently, her jumping around knocked over one little boy and made him angry. Her constant kicking of her friend’s desk lead to “I’m not your friend anymore.” She didn’t want to go to school in the mornings.

The rule of thumb with regard to medication and ADHD is usually, “When it begins to affect a child academically and/or socially, it’s time to intervene.” Academically, she was fine. But I realized that she was hurting socially. It was time to have the ADHD talk with her doctor.

That talk went really well. I was worried that Bronwyn would behave like a complete angel during the visit. (You know –in the same way one’s car stops making that sound when you take it to the mechanic.) Yet, bless her little heart, she sang loudly, ran around the room, and even displayed her tendency to talk so fast she has to stop to take a deep breath before continuing. The doctor saw it, and she gave us the required questionnaires for her teachers and us to fill out. (I was so happy that she showed all her ADHD tendencies in one visit that I took her to Baskin-Robbins afterward. Yes, I did.) It was interesting to compare the teachers’ perspectives to ours. I was pretty relieved to see that – when you held the forms up to one another – the ratings were almost identical in every area. I confess that part of me is still suspicious about ADHD diagnoses. As a teacher, I’ve often felt that too many kids are diagnosed and on meds. Yes, it was a relief that others saw what we were seeing.

She began ADHD meds three weeks ago. I didn’t expect to see results very quickly. But she came home that day – and every day that week – with a green (good) card. She finished all her work. She told me it was easier for her “to be good”. (Which I’ll admit broke my heart a little. In truth, there is no such thing as a bad 6 year-old.) And, when we took her to speech and occupational therapy, the therapists came out and reported that she “was a different child.” Later that day, she came home and sat at the dining room table working on a marker masterpiece – for three hours without moving. It’s kind of surreal. When she is on that medicine, she has good days. She comes home happy and proud of herself.

Things still aren’t perfect. Right now, she takes just one dose per day that seems to wear off. When it wears off, it’s just as bad – if not a little worse. She spent a few nights waking way too early, but that seems to have eased a bit. She has afternoons when she is quite emotional and unreasonable. And she has become more finicky about food. We have already adjusted the medication once. I’m hoping we can tweak things a bit to help with those issues. But, overall, I’m amazed. I’ve had a couple of folks tell me that you can tell it’s a genuine case of ADHD sometimes by how instantaneous the response is to the meds. I hope that’s true. I hope we are doing the right thing. It feels right. But self-doubt still wakes me in the middle of the night and haunts me during the witching hours of anxiety.

It isn’t the only thing that haunts me. I’m haunted by the knowledge that my baby girl sat too long in the waiting room. That – while we have been obsessed trying to meet the needs of our son – we delayed meeting her needs as well. I wonder why it all wasn’t completely obvious to me. I know how to love them equally – and endlessly. But I’m not at all sure there is enough of me to go around.

Last night, while snuggling, she asked me how much I love her. Before I got to the part about “all the way to the moon and back”, she said, “I know you love me a lot. But you love Callum just a little bit more don’t you? Because he’s special, right?” A little part of me died inside. I quickly corrected her. Tried to find the right words. Prayed she’d never forget them. It was a great many more words I can’t and would not quote verbatim. But their essence was, “Before you were born, I dreamed of you. Just you.”

I hope she believes me. I hope that one day they know I did the best I could. I hope they will forget all the ways I could have done it better and will remember all the ways I loved them instead.

And I hope they know that while triage is a necessity of the world – it has never been recognized in the heart of a mother.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity. It dares all things and crushes down remorselessly all that stands in its path.”

– Agatha Christie

A Most Extraordinary and Unexpected Gift

dear donor familyA most extraordinary and unexpected gift arrived in the mail today. Two letters from recipients of my dad’s donated tissues. Two people whose lives were enriched by increased mobility and a return to their normal lives from debilitating pain — one an RN who will soon return to her job.

Tissue donation doesn’t get the glamour treatment that organ donation does. But, for many, it returns them to having QUALITY of life. (Or vision, or healing from severe burns, etc.) Please consider it as a gift that you can give another one day. As Daddy put it, “Well, I won’t be needing them, so I might as well.” He would be pleased. I know I am.  :)

There are several places you can register your wishes online.  I have included one below.  It is most important, however, to let your family know your wishes.  When in doubt, most hospitals will not override their wishes.  So this talk should be had now.  Also, know that you have the right to specify an organ/tissue recipient be offered your gift FIRST.  Here’s a great candidate in desperate need now:  Sarah Murnaghan. 

To give the gift of organ or tissue donation:    DonateLife.net

I’m Guest Posting at WhattoExpect.com

I’m guest posting at What to Expect again.  If you’ve been with me a while, you might have read this one before.  It’s “So You’re Wondering If Your Child Might Be Autistic”, which I would describe as a starting place for someone worried about autism in a small child.  This post is one I get the most email correspondance from concerned parents.  I hope it helps someone in those first days of wondering and worrying.  :)

So you’re wondering if your child might be autistic. I know. I’ve been where you are sitting right now. Searching the Internet for signs of autism spectrum disorders. Going back up to the search bar to enter a different set of keywords, hoping to find some other site that will assure you that these strange behaviors your child has been evidencing are perfectly normal. Telling yourself he is just a little behind. Sharing your worries with a friend or family member, calming down for a day or two after being reassured by them that, no, it isn’t autism. And now you are wondering if you are just being paranoid. You’re worried that you might be borrowing trouble that you don’t need and possibly stigmatizing your child with a label that will follow him around for life. Yep, I’ve been there — and quite recently.  (Continued…)

 

Dear Relative: What Are You Waiting For?

Dear Relative,

Yes, I’m talking to you.  You know who you are.  You have an autistic child in your family.  It might be your grandchild or niece or nephew.  It might even be your own child.  I know you love him.  You want the best for this child.  I know you grieve for him.  If you had it in your power to give this child a “normal” life, I know you would.  But you can’t.

You see, all of these emotions are normal.  For every family that must contend with autism – in particular severe autism – there is a period of shock, sadness, and feelings of loss.  Loved ones may invest a lot of emotional energy and money into finding therapies – all in an effort to give this child as typical of a life as possible.  You are hoping and praying for the day when he makes great strides – talks, plays, uses the toilet, and learns to read.  That’s wonderful, because hope is what gives us the energy to keep on fighting for our children.

But you seem to be stuck.  You are still caught up in the grieving and all the questions that cannot be answered.  You haven’t moved on to acceptance.  That’s a problem.  Because -while you are busy waiting, praying, and worrying -you have forgotten the child who is right here in front of you.

I know he isn’t always easy.  The typical children in the family don’t scream when you take them someplace new.  They can eat wherever you go.  They love the things you buy for them.  When you talk to them, they respond.  It may seem like all of the fun things you want to do with the autistic child in your life aren’t possible, and that makes you sad.  I get that.  Sometimes, those moments make me sad too.

The thing is, you have forgotten what your job is here.  Your job is to love and accept this child.  As he is right now.  Like every child in your life, he needs you too.  Yet you seem to be waiting.  Waiting for when he can do all the things you would like to do with him.  You spend time with the other children in the family, but you limit time with him.  He isn’t invited to spend the night.  And, because he doesn’t enjoy the carousel, the concert, or whatever – he gets left behind.   You figure he won’t notice.

The problem is that you might be right, or at least you will be soon.   He doesn’t notice you.  He doesn’t know you to be someone he spends a lot of time with.  He doesn’t run to you when you come to the door.   He doesn’t care if he pleases you.  He doesn’t know you love him.  Because love isn’t something that is simply declared – it’s shown.  And because you are busy avoiding what makes you uncomfortable, you aren’t showing it.  You are waiting for him to become somebody you understand.

But this child is already somebody now.  He has things he likes to do.  They just aren’t what you like to do.  He gives affection.  He just isn’t going to do so on command.  He likes to go places.  But those places aren’t going to be loud, filled with people, or in the blaring sun.  There are so very many special moments awaiting you both, and you are letting them slip by.

If you want to have a relationship with him, you’re going to have to do better.  He doesn’t know how to meet you where you are.  You’re going to have to meet him where he is.  Find out what he likes.  Accept his autistic behaviors.  Stop focusing so much on what you want him to be and accept him for who he is.  Take joy in him now.  Because the day you are hoping and praying for may very well arrive.  He is still growing and developing.  Still making connections and learning how to be himself in a very strange world.  And the time may come when he reveals how very much he noticed all along — and asks you where you were.

For both his sake and yours, I hope you have a good answer.

Do you have a relative like this?  What are your experiences? 

School Essay Planning Guide

This has nothing to do with autism.  But I’m a teacher/media specialist, and I know that many of you have children and grandchildren out there who might benefit from this.   I created this today (along with our language arts team and a FDOE writing consultant) to help our struggling writers understand the writing prompt and keep their focus.  Kids often don’t understand what effective writers ask themselves during the writing process.  We will be using this to help them analyze a variety of writing prompts and essays as well as to write/evaluate their own essays.  This can be used with both middle schoolers as well as high school students.  If you are a teacher, feel free to copy and use to your heart’s content.  :)

Essay Planning Guide

Yes, I Ate a Cracker: On Hyperemesis (and Autism)

From the time I was a young girl, I always wanted to be a mother.  I assumed that I would have my children young.  (I didn’t.) And, because I never suffered with any “women’s troubles”, I also assumed that I would have a wonderful pregnancy.  I had visions of pregnancy as a joyful time of eating bon-bons and wearing cute maternity clothes.  For some reason, even the idea of childbirth itself didn’t trouble me particularly.  I had a lot of faith in Western medicine and was confident an epidural would take care of all that.  So, when I found out that I was expecting, I was thrilled.  I raced out to buy my obligatory copy of What to Expect When You are Expecting.  And I made a long list of possible names.

Exactly six weeks and one day into my pregnancy, I felt a little ill following breakfast.  I raced to the bathroom to throw up – and never stopped.

At first, I was sure that it was typical morning sickness.  I tried various wisdom remedies.  The ever-present cracker, ginger tea, sucking on a lemon, motion sickness bands, over the counter nausea syrup, etc.  I’m fairly certain there is nothing I didn’t try.  A couple of weeks later, the nausea and vomiting was steadily increasing.  I wasn’t functioning at work.  I was there, but often yakking in the bathroom.  I had attempted to keep my pregnancy quiet at work, but my obvious sickness made it an open joke.

Everyone, including me and my doctor, thought it would go away.  But it didn’t.  After a couple of incidents of in-office IV fluids, I was prescribed Phenergan.  It barely touched the vomiting, but did nothing for the nausea.  What it did do was keep me so heavily sedated that I could sleep away a lot of my misery.  But my performance at work suffered — a lot.  I was just showing up, in between days of not.  After being admitted to the hospital for a couple of days due to dehydration and high ketone levels in my urine, I was prescribed the anti-emetic Zofran.  (Zofran is often used with chemo patients suffering from nausea.) At that time, it was over $1000 a month – with insurance.  I ended up finding a Canadian pharmacy and had it shipped to me for around $350 for a three-week supply.  On Zofran, I was down to once or twice a day vomiting.  That enabled me to keep things down a bit better, but the nausea remained for the duration.

Please do not ask a hyperemesis sufferer if she has “tried eating a cracker”.

It was during that time that I learned the name of what I really had.  Hyperemesis Gravidarum.  Hyperemesis occurs in less than 2% of pregnancies and is marked by dehydration, malnutrition, and other serious complications.  In its most severe form, renal failure and even death can occur.  (Although, with the advent of total parenteral nutrition and medications, this is rare today.)  The writer Charlotte Bronte (Jane Eyre)  is thought to have died from hyperemesis.  Approximately 10% of HG pregnancies are terminated for the health of the mother.

Emotionally, I sank to levels of self-pity that I’m not proud of.  Even though I knew that having a terminal illness or chronic condition wasn’t at all the same thing  (for my having a light at the end of the tunnel), I suddenly empathized with everyone who had ever endured chemotherapy.  I wasn’t in pain.  I still don’t know what day in and day out pain feels like.  But I know all about the effects unrelenting nausea and vomiting.

I was vomiting blood for 8 months.  Your throat gets so irritated, that you pass blood when you throw up.  I sported petechial hemorrhages all around my eyes for the duration of my pregnancy due to all the vomiting.  And I popped a few blood vessels in my eyes as well.  Riding in a car can feel akin to hurtling down a roller coaster.  There were few, few moments at all that I wasn’t distinctly aware of being pregnant.  Simply because I was so sick.  I felt the urge to throw up every moment of every day – without fail.  It was suffering on a scale I am shaken to remember.  (I don’t think there has ever been a woman quite so happy as I to be induced with Pitocin.  Ironically, for all the misery of the pregnancy, my delivery was a breeze.)  But for months afterwards, I experienced depression.  My body was greatly weakened.  Four days after I delivered, I was 20 pounds less than when I got pregnant.  It took weeks for the nausea to slowly ease and for me to be able to eat anything resembling a full meal.

The inventor of Zofran has assuredly been reserved a nice pad in Heaven.

But what exacerbated the misery of it all was the ignorance of family, friends, and acquaintances who’d never heard of hyperemesis.  When it is explained to them, many respond with suspicion.  It is assumed that hyperemesis is just a pretty name for the morning sickness that most pregnant women experience at some time.  So, sufferers get a lot of unhelpful advice.  If only I had the proverbial dime for every cracker discussion I endured.  People suspect what they don’t understand, and they judge accordingly.  I was given guilt trips for losing weight, told that I wasn’t taking care of my baby by being so nutritionally depleted, given condescending pats, assured it would go away, and even told that I was “lucky” they didn’t treat me with what they used to do for hysterical pregnant women — locking them in a dark room until they no longer complained of nausea.  It’s bad enough being sick all the time.  It’s even worse to be told that you are imagining it or you are a hypochondriac — simply because it is beyond their understanding.

Following my first pregnancy, I was erroneously told that the likelihood of experiencing hyperemesis again was less than 10%.  (The actual figures are 50/50 and possibly higher.  After two hyperemesis pregnancies, it is all but certain you can count on a third.)  Wanting another child close in age to my first, I didn’t take the risk seriously enough.  Hyperemesis pregnancies should be planned.  There are high-risk obstetricians with experience in dealing with it.  There are even now 24 hr. Zofran pumps that a woman can wear and go about her daily life.  It is really important to be in the best shape possible before getting pregnant again.  I didn’t.  I got pregnant again less than one year later.  The second pregnancy was much worse, finally resulting in me having to go out on disability until delivering.

Your next question is likely to be one I have wondered for some time.  No, there are not any reported links between autism and a hyperemesis pregnancy that I can find.  However, hyperemesis is not exactly a popular subject of scientific study.  You can find message board threads of HG moms wondering the same thing.  Since the causes of autism have not been anywhere close to being sorted out, and – since the causes are likely to be varied and many – I doubt anyone could say.  However, there is some suggestion that an “environmental insult” during pregnancy could be a cause of autism.  I have my suspicions, and I’m curious to see what science comes up with regarding a possible link between the two.  I don’t think it is beyond the realm of possiblity that nutritional depletion of its mother could be an “environmental insult” to a fetus.  I will say that the concern is yet another reason I have chosen to not have the third child I have always wanted.  My children were well worth the hyperemesis, but I would not want it to endanger a third child.

It has been three and a half years since my last pregnancy.  And I’m still not back to normal.  I have no idea why.  I still wake up most mornings slightly nauseous until I get moving.  Motion sickness is an everyday problem for me.  I have a hair-trigger gag reflex and am much more sensitive to smells and medications.  Now I understand why bulimics have trouble learning to eat again.  It’s because vomiting is a reflex that can be hard to break when you are in the habit.  My mind knows I’m no longer pregnant.  But my body will not forget.  And, while it has occurred to me that I’m simply crazy, there are too many similar postpartum reports from other women like me to think that it is all in my head.  Hyperemesis can, apparently, have effects lasting for years.

A Zofran pump delivers a constant dose of medication that is often more effective than pills.

I wish that I had known more about it before going through it twice.  I adored my doctor and midwives.  But, in hindsight, I know I would have been better off seeing a specialist with experience in dealing with hyperemesis.  (I sure wish I’d known about that pump.)  But it taught me a lot of things.  It taught me compassion for those who suffer.  It taught me to assume nothing about subjects I’m unfamiliar with and to avoid judging others.  It taught me how to endure.  And I learned a lot about who my friends really are.

If you want to learn more about Hyperemesis Gravidarum or you are seeking to prepare for a pregnancy with it, I highly recommend visiting HelpHer.org.  In addition to information, you can find support there as well as a list of doctors with experience in treating patients with the disorder.  That could make all the difference for you for someone you love.

Note: I am NOT saying that autism is caused by hyperemesis.  I’m just saying that I am a human being and that human nature is to wonder.  Since there is no definitive list of causes for autism, and since they are likely to be many, I am merely saying that I wondered if one day a link between maternal nutritional deficiencies and autism might be found.  Obviously, being a mother of an autistic child, I would never dream of attempting to “blame” women for their children’s autism.  For anyone insisting upon being overly sensitive, I might point out that there are, in fact, causes somewhere and that wishing there weren’t won’t change anything. In the end, science will tell the story.  :)

Notice

My beloved father passed away on Wednesday, May 9th.   Although I am not usually at a loss for words, they are in short supply at this time.  Hopefully, I’ll find them again soon.  Though I’m sure many of you are rightly suspicious wordiness on my part will come sooner rather than later. 😉

I plan to be away from my blog for a few days to mourn my father – a man a dear friend so aptly described here:

“My heart is so heavy this morning. A wonderful man has left us. Father to a dear friend and grandfather to her children, as well as a friend of mine, passed away last night. A grand Southern gentleman, an intellectual, a thoughtful and wry wit, and a deeply loved man. The world is less today.”

Giveaway Winner(s)!: I Wish I Were Engulfed in Flames

So I dropped all of the commenters names into a bowl and drew one.  That lucky winner is:  SortedMegaBlocks!  Congratulations.  The publisher will soon be sending a brand new copy your way.  :)

But then I got to thinking about the copy I have.  And, being a librarian, I’m all about sharing the love when it comes to books.  So, I drew again.  And, if he doesn’t mind a copy with a few bent page corners (Please don’t turn me in to the Librarian Police.  They’re sure to be tougher on one of their own.) , that copy will go to:  Jim Reeve!

I’ll be emailing you both to get your addresses.  :)

Warning: This Post Will Self-Destruct in 5..4..3..2..1..

No, really.  I’m planning to delete it.  Like later today or something.

Autism parent blogger Jillsmo has a guest blogger today.  A guest blogger who once wrote a controversial post that was just a tad notorious.  Now this covert blogger has been forced to publish using a nom de plume in order to continue sharing the valuable lesson learned from her experience.

All hands, abandon ship!  Proceed to the Shuttlebay…