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

18 thoughts on “On the Failures of Triage: When Mom’s in Short Supply

  1. Carrie

    So true and so similar to my family’s situation including the daughter’s sneak-attack of ADHD while parenting a special needs son. You are human, doing the best you can which is better than most, and your love will be what the kids remember. Your daughter is young, and getting her help for ADHD now is an enormous gift you’ve given her.

    Thank you for your honest, heart-felt writing! I’m off to find a tissue for my tears.

  2. Lisa

    I can completely relate. We discovered my oldest’s ADHD once we were in the throes of therapy and diagnosis of our autie’s life. I feel similar guilt…and similar frustrations.

    When my oldest was in the beginning of second grade he asked me,”Mom, why do you love Tate so much more?” Broke.my.heart. That question haunts me to this day.I hope I can convey to each of my kids how much they mean to me and how special the are. Oh, I really related to this…and know you aren’t alone.

  3. Jen

    I know exactly how hard it is to always have enough time for each of the kids. With my oldest being on the spectrum and the baby being, well, a baby, my daughter who’s 5 gets the short end of the stick, so to speak. She began acting out, having fits and saying things like “I feel like everyone’s mad at me” “no one likes me” and “I’m the worst sister/daughter ever”. Yes, we tried counseling. No, it didn’t help. I tried spending extra-special time with her. We spent so much time in therapy that I didn’t have the time I needed for them, much less my husband or the housework.
    What broke my heart, though, was when my daughter told me, calm as can be, that she understood I didn’t have time for her because her brothers needed me more. That’s certainly not the message I was trying to send her, and afterwards, I broke down. It made me really think about the needs of the whole family.
    Therefore, we made the decision to take a break from therapy, and focus on family a bit more. I want to do what’s best for my son and get his needs addressed, but I also have to do what’s best for the family, and having more quality time together when I’m not worn thin is equally important.

  4. Kaytee

    I’m glad to hear you got your daughter the help she needed — it is spectacularly unfair to the NT (or significantly less impaired) kid when 110% of their parents time/effort/money/attention is invariably devoted to their sibling with special needs.

    Read “The Normal One” and listen to NPR’s “Well Sibling Syndrome”, both of which examine what it is like to be the non-impaired sibling.

    Intellectually, I understand that my parents needed to focus their time/attention/effort on my brother, who is on the severely impacted side of the spectrum. I had ample opportunity to learn to be independent at an early age — to pack my lunch, schedule and get myself to my own doctors appointments and figure out how to get to soccer practice on my own because both my parents would invariably forget to pick me up (subway or grandparents were much more reliable) from around the age of ten.

    Emotionally? It sucked. I was a second class citizen in my own home. My brother couldn’t/can’t help it and my parents did the best they could.

    I’m 23 years old, got my Masters over the summer and moved to a neighboring state to start an awesome new job that I love. I call my parents once a week, because I’d feel guilty if I didn’t. They are proud of me and feel they contributed to my success — well, if you count their benign neglect of me translating into organizational skills because I couldn’t count on them to care for me.

    My brother? Remains profoundly impacted and the center of my parents lives. I broke their hearts by refusing to be his guardian or take any role in his care.

    You reap what you sow.

    1. Jennifer

      Sounds like your brother dodged a bullet by your refusal to be in his life. Only a truly selfish person would see his disability as a personal affront. Shame on you.

  5. Meredith J

    Your story completely has me sobbing and while I only have one autistic child, I know exactly what you mean. I know that on the interwebs there is supposed to be this impersonal disconnect, but your posts are so honest and heartfelt that I got a little worried when you hadn’t posted in a while.

    I think we all feel at times that we are not enough for our child/children. It is especially hard when that fear is heard outside of your own head. You are enough. And while you say that “children do need more than love”, your love is the most that they need. Everything else follows from that. All of your writings ooze that love.

  6. Jennifer Jenkins

    I feel like I am living a parallel life. My son Jackson (4) has autism and his middle sister Riley (turns 6 on Saturday) was just diagnosed with ADHD. We also just started meds and we are trying to figure out the best fit with the medication. Riley has always been described as our high-energy spunky child with excessive talking & non-stop “going”. A family member even said, she does not run down until the last bit of her battery has given out. But the guilt associated with always taking care of her younger brother weighs heavily and I totally get that.
    Thank you so much for sharing and know that you are not alone. And your optimism and humor give hope!

  7. Sarah Chapman

    I have two sons. The younger with an ASD ADHD combo of diagnoses. The older son, NT, but with a chronic health problem is loved and cared for – but has an unnaturally mature understanding of his siblings needs. His sibling is at boarding school now and so much money is spent on one child over the other. One grandmother pays towards school fees for one grandson. The other grandmother pays towards treats for the other. The older son is welcome at his cousin’s wedding with his father. The younger one and his mother are not welcome. Some families only do perfection!. We do the best we can – and weep when there is not enough of us to go round. So trust yourself, share the load where you can and balance the tightrope of inequality. Remember – we may not be doing it willingly – but we are aware of the needs of each of our children. May we trust and pray that no 23 year old child of ours ever feels betrayed and less-loved.

  8. Jim

    Way to make your child a shell of her former self. You are a monster and deserve to be fed the same ‘medication’ you are force feeding her!

  9. Whacamole Mom

    The metaphor of allocating parenting resources as triage is perfection. Love that!

    I understand your guilt. Every parent does, I’m sure. Still, you are helping her now. At SIX! From what I understand, these issues often aren’t identified and treated until much later for many kids, so don’t be too hard on yourself. Also, amazing that treatment is working so well. It’s never an easy decision to medicate, but these changes speak for themselves.

    I really love this post, and I’m sure it was hard to put out there…so thank you.

  10. Karla T

    Beautiful post. Mom is one of the toughest jobs available. Your obvious love for your children will carry you through. Keep up the good work.

  11. Denise

    Welcome to the world of what i like to call “gray area” invisible disabilities. Teachers sometimes make comments about our kids such as:
    “If he just applies himself I know he can do it”
    “if she would just stop looking out the window she would be able to focus and not get so distracted”
    “well he did it yesterday so I know he can do it- he’s just being maninpulative and not doing it today for whatever reason”.
    I pray you NEVER have to hear these comments from your daughters teacher/principal, etc. If you do –try not to be upset as I have learned that the ignorance that comes from my kids teachers is more an issue with lack of understanding of the disorder than it is with them being judgmental. I often use this example for people – would you ever say to a blind child…”come on if you just squint a little bit harder I know you’ll Be able to see it!
    They just need the schools administration to give them more,training on these disorders.
    My special needs child is not autistic but rather ADHD (and now mood disorder also). He was the ADHD kid who kept it together at school all day long only to fall apart as the bus pulled away in the afternoon. I was actually grateful when my sons 2nd grade teacher called to say “I think I might be seeing some of what you say goes on at home”. (he was making animal noises which he was apparently clueless about as was he when his friends no longer wanted to sit with him at lunch).

    In our house He is sort of the equivalent to your Callum. He has always demanded more of our time, energy and has had countless therapies, dev ped, neurology, psychiatry appts. My 2 younger girls are the ones who end up on the back burner at times (and the poor dog). That’s why I decided to sign them up last year for a sibling support group in our community (in addition to trying my best to spend some alone time with them also) to give them something that is just for them and where they can talk about their feelings toward their brother….and us! But I have also known for awhile that our middle child would probably end up with an ADHD diagnosis as well-she’s more the inattentive type. Huge issues with emotional dysregulation – holy cow the drama is Oscar worthy at times!
    I have to say I am saddened though on your comment about not being sure still about the validity of ADHD?? If I read that correctly? I do agree that a lot of kids are over diagnosed with ADHD and there are a multitude of factors for that including a shortage of child psychiatrists and developmental pediatricians for example in our country who are specially trained to diagnose this condition. Also reduced allotted office visit time to see and appropriately assess a patient for ADHD – just in case you didnt know –providers office visits are driven by health insurance and reimbursement. The less your ins co is willing to pay for services the more patients your provider has to see in a day to make the same amt of money for the practice. Trust me on this one – I’m a nurse practitioner and this is exactly the reason I dont do primary care! In addition parents often feel pressured by the school to get their child diagnosed and medicated – I have never personally experienced this but there are many people on an on-line support group who say they have. Many times these are on children that do NOT meet criteria for ADHD but rather the school is simply overwhelmed by how much they need to teach and the increase in class sizes due to budget cuts, etc, etc.
    Then there are the parents who want the diagnosis and subsequent stimulant medication for their child just to give them a little advantage over their peers.
    I think I hit on most of the reasons. Having said that,the sad thing is, there are probably more undiagnosed children – and adults – than there are cases of overdiagnosis.
    And try hard to let go of your guilt. 6 is still really young to be diagnosed w ADHD so you should be proud of yourself for staying on top of it so young. That is great! I know the feeling of taking your first dose of medicine and feeling that fog lift from your brain. It boosts your self esteem a thousand fold

  12. Keegan Sluis

    I work for a company that works with children on the spectrum and I certainly can appreciate your honestly. It sounds like you have a lot on your plate. Are you finding your daughter is easier to deal with? how is your daughters relationship with your son?

    1. Profile photo of FlappinessIsFlappinessIs Post author

      She adores her little brother and is very good to him. But, right now, she is much harder to deal with than him. Of course, Callum is just a mellow little person anyway.

  13. Shannon Benton

    Thank you for this post. I have only 1 child but is ASD and ADHD. A caregiver told me he was ADHD when he was 1.5 years old! I didn’t believe her then, but turns out she was right. I didn’t want to medicate, but it became clear we had to do something. The meds have helped him tremendously academically, he is a very smart boy, but socially, I am sad to say, he doesn’t have any real friends. It breaks my heart to see how he is ignored at baseball when trying to high-five a teammate. And that he never gets invited to birthday parties. I am very outgoing and did well in sports back in my day, so it is hard to see him struggle so much with coordination. I too have guilt trips I lay on myself; am I giving him the love he needs, am I being too hard on him, etc. He is 12 now and while he gives me no trouble about going to school, he doesn’t like it. I would like to start a support group in my town, there has to be other parents out there feeling the same way. Maybe I could get kids together that “get” each other. That is my dream. Any advice would be greatly appreciated.

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