Who Decides Our Children’s Worth?

posted by Momo Fali on March 25, 2014

This is long. It’s been a year in the writing, so please bear with me.

Before my son started elementary school in 2007, I met with the principal of the school we hoped he would attend; a small, private, Catholic school where his older sister was a successful student and where we knew almost every family and child. And, therefore, they knew us and our challenges.

We couldn’t think of a better place for our son. We knew that the Christian values, their stance on bullying, the backing of our priest, and the supportive community was just what any special needs child deserves. Here was a kid who had barely survived his first few years, who didn’t speak until he was four, who had to be spoon-fed by me until he started kindergarten; we knew he needed to be in a place where kindness and compassion were paramount.

So I helped the school form a fundraising committee so kids like mine could attend. It was to pay for tools, aides, education and anything else these children needed. I stood up in front of our entire parish and asked for money and they gave it. Lots of it. Now, I feel like a fraud. I am so sorry.

There were times over his five years there that were really good and there were teachers who understood him completely. The students were great with my son and the other parents were just what we’d always hoped for; supportive, happy to educate their children, and never shunning us. Not once.

But, somehow, last year everything fell apart. He was sent home nearly every day for behavioral reasons, he was made to sit out of the Mardi Gras celebration (a religious holiday, no less), and he wasn’t allowed to go on a field trip to the Newport Aquarium even though my husband took a day off work to be his sole chaperone. Never considering that maybe seeing him with his father would give them insight into applying discipline that worked, they simply told us he wasn’t allowed to go.

Here was a child whose life had been full of some pretty awful situations and they didn’t give him the opportunity to be included in fun life experiences. I don’t know if I can ever forget that.

aquarium

I took him to the Newport Aquarium last week while he was on spring break so he could finally have the experience. He behaved perfectly and we had so much fun.

Was my son well-behaved? No. Was he disruptive? Yes. He has autism. He made strange noises in the classroom, he had to be given some tests orally because he got anxious otherwise, he tore library stickers off of books, wouldn’t tuck in his uniform shirt (GASP), he cut up papers, didn’t do his homework and when the teachers would look for his papers they would find them in the recycling bin. Sometimes he talked back or wouldn’t talk at all.

BUT, he was also learning and he had friends who played with him at recess. He was involved in sports and went to sleepovers. He had the kindness and compassion that we were hoping for, just not from some of his teachers.

These are excerpts from a letter that one of them (not even HIS teacher, but another one in the building) wrote about him:

“…I gathered he did a number of things that…were belligerent attempts to gain attention…”

“I made several statements to him, ending with ‘do you understand?’ He refused to answer. I told him to say Yes or No. He refused to answer. I suggested maybe he return to kindergarten if he does not understand opposites.”

“Based on my interactions with him today (and in the past) as well as the challenges faced by many adults in the building, as a result of his behaviors, today alone, any outside observer might wonder why we have decided that (we) can manage this child’s needs. He does not have respect for authority, or a proper concern for acceptable social behavior.”

“I’m not sure he thinks in the long term, anyway. I do believe that (he) fails to see a bigger picture for his own future, but instead travels through each day based on his own assessment of one interaction after another. His decisions are impromptu, so to speak, and the very idea of building up rapport with peers and adults, of long term maintenance of good behavior, are not part of his thoughts.”

Would you leave your child in a building with someone who thought of him like that? Does that sound like someone who had been educated on dealing with autistic children? There was much, much more to the letter. Three full pages of it, in fact. Him not being allowed to go on the field trip was the deciding factor in us pulling him from the school – this letter that we received a few weeks later, was proof that we made the right decision.

But now he is in a school with no typical peers. He is hit, cussed at and screamed at by other students every single day. Yesterday, he came home in tears and said he doesn’t want to go back. Where do we go from here?

And, suddenly I’m wondering if removing the kids from these situations is the only solution. Maybe we need to remove the teachers. Certainly, if a classroom of 10 year olds can show compassion to a child with autism, an adult should be able to. Right? Especially a person who is trusted with the lives and education of our kids.

Maybe we need to take a deeper look at bullying by teachers, at special needs education and how we integrate children into typical classrooms. Maybe when a teacher wants to just give up on A CHILD (whether a 10 year old, medically fragile child with autism or a typical one), we should evaluate the situation to see if the child has more worth than that.

I’m pretty sure that every, single time we’re going to think the child does.

    Comments

  • Lisa Daly


    Momo, I almost cried when I read this! I agree with you completely about the issues with the teachers and administration. AND I am so sad for you that the new school is the way it is…I hope that you find your niche for him and he will flourish! BIG HUGS!

    • Momo Fali


      Thank you, Lisa!

  • Headless Mom


    That is hideous. Yes, you made the right decision. A local family has recently made the decision to remove their autistic daughter from our local schools (where she has had many accommodations over the years) and send her to a high school specializing in autistic teens. It’s over an hour away. While I’m thrilled that this family has that option, I’m worried sick about the families that don’t. I hope that you are able to find a solution for your boy. I don’t know him but I know that he is a joy when surrounded by caring, compassionate people. xo

    • Momo Fali


      “…I know that he is a joy when surrounded by caring, compassionate people.” Yes. This nails it. Thank you.

  • Liz


    What you guys have gone through, in just a few short years, is simply appalling. I applaud your advocating for your children, but it shouldn’t be so gosh-darned difficult. Hoping you find educators who see nothing less than the greatest potential in your child and the strength from those of us, here on the internets, who are totally rooting for you and Adam <3

    • Momo Fali


      XOXOXO

  • Tanis


    I’m so angry for your family. For your son. The teacher who wrote that letter clearly is not cut out or educated enough for dealing with children with autism or any sort of behaviour issues. And clearly, a bit heartless to boot.

    I don’t really know what to say. I’m up here, embroiled in my own frustrating battle with the school system. These last four years of school have been great for Knox. (mostly) But next year he has to transfer schools and we go from a fully inclusive school to a fully segregated system and I have NO other option. All the benefits of being surrounded by peers will evaporate because they are literally planning on shoving my kid into what was once a BROOM closet.

    I’m banging my head against a wall and I don’t know what to do.

    Take solace in knowing that too many families like ours are miserable with not having better solutions for our kids because society has deemed them valueless. ARGH.

    • Momo Fali


      Tanis, they have more value in their little fingers…

      If only these schools could look past the “inconvenience” and see the joy these kids bring to those around them. Hugs, sweetie. Solidarity.

  • Melisa


    My heart breaks over this, especially knowing him like I do. I’m so sorry (understatement) that you have all had to put up with this: you ALL deserve better. I am glad you finally wrote it up though: I know you needed to and I hope that getting it out gives you one teeny tiny bit of comfort in the middle of all of this! Love you guys. xoxoxoxoxo

  • Patty


    I am appalled that teachers can write those words about a student. Have they no education or sensitivity. I am so sorry that you and your family have to face this situation. Sending you lots of hugs and prayers. I wish I could do more. xoxo

  • Amy


    Oh Momo, my heart breaks that you’re going through this. I wish I had an answer. I got out of special ed because I just couldn’t face the fight anymore. It broke my heart too many times, to see the way the “typical ed” teachers treated my students – and that was before I ever had my own classroom. I agree 100% that teachers perpetuate more of the bullying in schools than we would ever imagine. They bullied me, as a student teacher. They bullied my kids. It was horrible.

    You’re smart and tough and resourceful, and you WILL find a solution, and your son will see that you’ve always done your best to protect him, and that will matter.

    Love to your whole family as you navigate this.

  • Amie


    Diane, I am in tears and my heart is broken. My heart breaks even more that he does not want to go back to school. In my opinion, my kids should feel safe in two places. 1.) My home and 2.). The school they attend. To know that one of the places they should feel safe and at peace was not available, makes me really sad. I hope you find a solution that makes Adam happy and can grow and succeed.

  • Maria K.


    MOMO –
    We started our son in a small, local parochial school where my father was the deacon for 30+ years. Within two weeks, we were told he needed to conform and fit in better. He was treated poorly. He has Aspergers. We removed him, put him back into his Pre-K program and then put him in a local public school. We had many challenges and during third grade, I probably cried every single day and had a standing appointment with a girlfriend at least three times a week to cry on her porch and have a glass of wine after school. We are their last resort, we must fight the good fight to be sure they are getting adequate services. We must rely on our friends to help us when we are struggling. We must rely on our GUT to guide us through unknown territory.
    Adam is in good hands with you! Contact me any time, I am always good for a glass of wine or martini.

  • Mama D


    Oh Momo.

    I am heartsick and furious on your son’s behalf. This should just NEVER happen, and these are sorry, pathetic teachers. Hugs to you and your boy.

  • Nancy Davis Kho


    I am so, so sorry you and Adam are going through this. It’s not right.

    There were two boys with autism and a dedicated aide in my younger daughter’s 4th and 5th grade classrooms, and between the principal, the aide, the teacher, and the kids themselves, it was a positive experience for everyone.

    And it was a really important lesson for my kid to get to know those boys and their challenges. When she went to camp last summer, one of her bunkmates had autism and she said to me, “Mom, I was the only one who knew how to talk to her. The other girls were mean but I could see that she was just autistic.” The counselor confirmed that my kid looked out for the other girl, because she knew that her two friends back home needed that extra help.

    Your old school is missing the chance to teach their students (and, sadly, their teachers) this life lesson.

    I pray you find the right place where Adam will be appreciated and supported.

    • Momo Fali


      I wish I could put giant, flashing neon around this comment.

  • Sarah M.


    That letter is so crazy, I can’t even believe a teacher would have the gall to write it! I know you live where I live, have you tried reaching out to the Nisonger Center at OSU? My son was in early intervention through their program at the daycare and those people get it. My son hasn’t been diagnosed with anything, but is behind his peers in peer-to-peer interaction and gross motor and the leaps he made under their care was amazing. If nothing else, they may be able to guide you to something more tailored for your son.

    • Momo Fali


      We are actually involved with a Shakespeare program through Nisonger right now and my son loves it!

      • Sarah M.


        Oh, and that comment by that teacher about asking your son a question and not getting an answer hit super close to home. My son is 3.5 and gets really overwhelmed by questions and shuts down. It is frustrating, but the thought that a teacher would say those things to or about my son makes me fearful. We are lucky right now that he is where he is. That Shakespeare program looks awesome!

  • Ann


    Momo I’m speechless, but speechless doesn’t help a damned thing.

    I’m so sorry for Adam’s struggle and for your exhaustive/exhausting advocacy.

    Praying that the right school for Adam does exist which supports him and allows him to thrive. He has that at home, thank God.

  • vicki


    You are a mother bleeping warrior and Adam deserves an entire universe filled with light, love and laughter. And people who care about his well being and happiness and heart. Hugs to you Diane!!

  • Jennifer


    It’s disgusting and disheartening to know that our children cannot be safe in their own school. BIG LOVE to your and your amazing little boy. He is lucky that he has an amazing mother who is willing to kick ass and take names for him.

  • Jessica


    Long time lurker but I couldn’t float past this entry without stopping for a second and saying that in my experience (I have a sibling with cerebral palsy) the ugliest most damaging bullying I’ve seen pointed at children with disabilities comes from teachers and adults who find themselves uncomfortable with an unconventional child and decide their discomfort is the child’s fault. It fills me with rage and horror – I remember the teacher who failed my sibling because of his cursive handwriting – which he did with a thick pencil clenched in his fist and controlled with constantly flexed bicep. Painstakingly practiced every day of third grade and given an “F”. The whispers behind his back but in front of me. The staring – God, I could write a book about the staring. But I want to also say that in the world of hideous, damaged adults, there were wonderful adults in my sibling’s life. And he is ok – better than ok. Amazing. And he is loved – so so loved by his family/his community/and finally, by himself. After a long journey of self-discovery, reclaiming what makes him powerful and whole. I have a candle lit for your son and another one lit for you. When your son is a grown man you will sit at the Thanksgiving table with him and his partner just like I do with my sibling and we are all ok.

    • Momo Fali


      Oh, I got the big old ugly tears from this comment. This is all I want. I want a happy, healthy, powerful and whole adult son who made it unscathed through childhood, despite the best efforts of some. I will happily bear the scars, but I don’t want him to have them. Thank you for sharing this, Jessica.

  • Jenny


    OOH this makes me so MAD. Diane, I’m so sorry that you are struggling with this. I have no useful advice, only indignation and love for you all.

  • Erin


    You know me, I’m a woman of action. I want to yell ‘Ok! What do we do? How do we FIX THIS?’ but I’ve learned that some things don’t have answers and some thing need fixing in a way we just haven’t discovered yet.

    I also know you, and you are a woman of action. If there is anything i have learned over the course of the past few years it’s that you WILL find a way and you WILL make it happen. The hard part is it may take time. And time is something you don’t want to waste when it comes to the lives of your children.

    I have every faith you will find a way. No doubt in my mind. Just give yourself a little time to wrestle with it in your head and heart. The answer will present itself.

    • Momo


      Thank you, Erin. If anyone had taught me strength and determination, it is you!

  • Steph


    So sorry to hear he was treated this way. His OLP classmates miss him, his honesty and quick wit. Keeping you in our thoughts & prayers.

    • Momo


      Thank you, Steph!

  • Carolyn Dingman


    Ugh. Momo, this makes my stomach hurt. I’m so sorry. It shouldn’t be this hard. :(

  • Muffintopmommy


    I’m so sorry. :( I’m appalled as a mom and a Catholic that your son would be treated so poorly. We were in Disney last month on the safari at Animal Kingdom and my third grader made us take 800 pictures of the elephants for his friend in class who has Autism. We heard over and over about how much this kid loved elephants. If kids can have compassion and understanding and just offer simple, genuine friendship, why can’t grown ass adults? It’s not rocket science to treat people they way you want to be treated or the way you’d want a loved one to be treated! Seems like that’s the crux of the problem with the teachers at that school, and that’s sad and a pathetic example for kids. I know you’re such an incredible advocate for your son and I hope and pray he finds the right school setting soon.

    • Momo


      I love your kid.

  • Windy


    Hi – I am so sorry for your situation and can say I’ve been there. And it gets better. We pulled our child in 1st grade and home schooled until we found a great charter and then had the public system place our child in a specialized private school in 6th grade.

    We found out the hard way that just because the school is catholic, the teachers and staff and other families don’t necessarily act with Christian values. Not only was the first grade teacher disrespectful to our child, she was in denial and protected the children who were bullying.

  • Lynn


    I would love to get this woman’s address and give her a wake up call. I would have to calm down first or I would give her a new hair-do too.
    Verbally bullying an autistic child because he is behaving like an autistic child is inexcusable. Passing judgement on him makes my blood boil.
    Your son is a delight. His joie de vivre is inspirational. So he doesn’t fit into her mold. She needs to learn about autism and how to nurture. What an arrogant woman!
    I pray you find a good fit for your little guy where he can learn and grow and be his happy self.

  • Kathleen


    Gosh, some of those comments were just plain mean! I agree, the teachers sound like bullies! Hard to believe that they are coming from educators! They see to have no compasion. “I suggested maybe he return to kindergarten if he does not understand opposites.” “He does not have respect for authority, or a proper concern for acceptable social behavior.” I know very little about autism, but those comments seem like obvious parts of autism to me.

  • Kellen


    I’m also a long time lurker. I love reading about your son, who’s awesomeness shines through your words. The ignorance of some educators is frightening, isn’t it? I had to remove my daughter from her parochial (non Catholic) grade school at the end of her 4th grade year. She is not autistic, but she does have severe ADHD and other behavioral issues. I honestly thought her teachers were going to throw a party when I made the decision to put her in public school. For us, though, public school was a blessing in disguise. My daughter thrived in the environment, but the anti-bullying rules at our public schools are very strict. We have had teachers lose their positions because they did not stop bullying or they participated in bullying in the classroom. I’m sorry you do not have that where you live. I’m praying for your family, that God brings you answers and quiets the sufferings of your heart.

  • Sadia


    Oh Momo. I am so sorry. So so so so sorry.

    Don’t think for a moment that those of us neurotypical kids (ever think I’d get to say that about mine when they itty bitty?) don’t notice. Several of us have spoken up about a bully teacher at our school. A student she gave up on in her class, who got left out of a field trip last year, has been flourishing this year with a loving teacher.

    I feel like I have a special responsibility, as a parent of “model” students, to speak up in defense of those teachers are failing. And I do. But I can’t make a difference alone, so please, everybody, join me in speaking up.

  • mare


    I’m in agreement with everyone here. This is just so heart-breaking and wrong. God bless your boy and your efforts to find the right place for him. I had a handicapped brother, and back in the 60’s, my folks started a school for kids with various disabilities. Families came out of the walls, there was such a need. Maybe God is calling you to take some wild initiative. Give Adam hugs from all your blogger friends. He is precious in God’s eyes and in ours.

  • Michelle


    I feel your pain. We pulled Mister Man from the Catholic School we had so loved his first two years. His teacher clearly didn’t want him in the class and we had the same sorts of comments – he got in trouble for picking dandelions and giving them to a girl in class during recess because other kids made fun of her and she cried – and it was a negative experience for him. We are truly lucky though. When we pulled him in the middle of the year, we or him in a public school that gets him. The teachers have been amazing and he isn’t in trouble. He’s in the gifted track and had friends. He still periodically gets picked on, but it isn’t excessive and is dealt with quickly. But that one teacher simply wanted a perfect classroom and thus four kids didn’t fit. She refused to communicate with those parents and harped on the kids. Three of the four were neurotypical, too, but just didn’t fit in that perfect box she wanted. She is the one who I question most. She’s still there and parents and kids still have the same issues year after year. Fingers crossed you find a safe and happy solution. Boo.

  • Caretaker of the Golden Dragon


    No doubt you are insanely busy… Randomness landed me on your blog…Your son is beautiful. His story and the other responses evoked a very emotional response…I am not normally moved this way. Not known for exaggerated responses, honestly I find I am enraged wrting this, and more than a little sad. Your son has a voice and the teacher/school has ignored and attempted to silence it. Wish it was the ‘rare occurrence’, however even being a pretty upbeat person, it is not opinion when I say this is the norm for autistic children in a public/Catholic school setting. Most teachers and schools are not trained/educated to interact appropriately with children on the autistic spectrum, and deep damage is done daily to a normally happy and bright autistic child every hour of every school day. The result of attempting to keep them IN schools with teachers that shame and humiliate them is very devastating, and within a few months, let alone years, the result is a very damaged and depressed child…who until that point, was happy and learning well enough at home, surrounded by loving people. I am on the autistic spectrum, as is my son. I do not reach out to people normally, being intensely respectful of others privacy and protective of my own as well. If you can see my email as you are I assume the moderator of your own blog, please mail me. I have information for you I do not feel comfortable giving to you in a public forum. Thank you, and sharing his story is brave.

  • Shannon


    I hope the person who wrote that reprehensible letter will read these comments and be deeply ashamed. Clearly the writer was doing exactly what they accused your son of doing, “travel(ing) through each day based on his own assessment of one interaction after another.” I have never left a comment here before, but this post really infuriated me. I cannot imagine reading that spiteful letter, knowing it was written about my own child.

  • Kim Tracy Prince


    I saw you publish this the other day and I saved it until I had time to read. I have nothing but prayers and hope to add to the comments above, and the reminder that by writing this, you did something about it, even if it’s just the tiniest little movement of self-help for YOU. As his advocate, you can only help your son when you are taken care of, and your spirit needs this outlet. Keep going.

  • Shani


    Thank you for sharing, your story has help me to get through the week as we have been going through the same thing. It has gotten to the point where I want to take her out, but no school would take my daughter Samara this late in the year. I am left with saying a prayer every morning that I drop her off at school. If they had just taken the time in the beginning to just speak to her calmly (as I had asked/told them)she would have been more responsive. These teachers should be trained to recognize, teach and respond correctly to our children. Thank you again and stay strong!

  • Martina


    I teach high school students and believe me most 16 year-olds cannot think past the moment. Why would anyone think any ten-year-old child can; much less a child with autism?

  • Mrs4444


    Momo, I’m so sorry to learn of this. I haven’t read the many comments before mine, but I’m wondering if you could enroll him in a regular, public school in which his IEP would be a legal, binding document and there are (hopefully) better-trained professionals to help teachers learn to bring out the best in kids like your little boy. Of course, there are always bad teachers, but an IEP would protect against that.

    As a spec ed teacher, my heart breaks for kids whose parents don’t know how to advocate for them. Your little guy is blessed to have you for parents.

  • AlisonH


    That teacher was only saying that *she* couldn’t teach him and she knew it and it made her afraid because it made her feel imcompetent.

    Which she utterly is. But she was trying to make it his fault.

    I so want to print out your post and every comment and give a copy to the principal first, that teacher, and forgive me but I wish the local newspaper, too.

    When my youngest was a toddler I used to trade off babysitting with another mom five days a week, her extremely generous offer so that I could get indoor swim therapy after having been diagnosed with lupus. Her little two-year-old was a lot like your son (without the medical issues). I have a fierce love and sense of protection for kids like that because this one claimed my heart like he was my own.

    He turns 26 this year. He has graduated from college, he went on a mission for the Mormon Church, he posts pictures on FB of having a good time with his friends. He became everything that vindictive teacher chooses to deny as a possibility to your son and proves her every word to be false.

    And I want so badly to hop on a plane over there and give you all a big hug.

  • Monica


    Momo, I am spitting mad reading this. I’m so, so sorry to hear what your son and your family have gone through. It must feel like — it is — betrayal by a school community that you were once a happy part of.

    We’ve had issues with our own Catholic parish school that made us pull our kids out…we were able to return with a change in the administration. But reading this post put me right back in the furious place where one particular teacher, with the support of the principal, tried to make my son at fault for her ineptitude.

    In his case, today he is a disaffected high school student who doesn’t think he is intelligent and believes that he just can’t succeed in school. Honestly, I blame that one teacher. That was a horrible year. I know, many things might be at play, but we saw such a drastic change in him that year and we’ve been trying to address it ever since.

    Your son deserves so, so much more. I am praying for him and your family, and hoping you find a solution. Something tells me you have the tenacity to never give up.

  • Gina


    I was a dyslexic, well behaved, quiet kid in Catholic school in the 80’s. I struggled with math, did well in all other subjects. Teachers passed me along because I did my homework, asked questions, and was no trouble to them. None of them were at all trained to detect my issues. Teachers would leave me out of activities, favoring the smart girls, it hurt my feeling terribly. I was diagnosed, got vision therapy and it all turned around. I graduated college, have a great job, but lack basic math because they simply did not teach me. I literally practice basic math skills. My 8th grade teacher told me to learn to type because I would never get into a college. My parents paid good money for this “education”. Try the public school, you may be pleasantly surprised. Best of luck to you and your family

  • Elizabeth Wood


    Love your site! Just discovered it,and I too thought you must be some kind of rare Earth mother with a name like “momo fali.” Maybe someone similar to the unusual holistic nutritionist that treated my autistic daughter. So sorry to hear your trials with school. We had a similar experience, albeit at a younger age, with our daughter. It was deeply damaging for us as members of the church where we had once felt welcomed. That experienced changed me in so many ways. We were blessed to find a tiny school that caters to this little community, at least until middle school. I give thanks every day for having a place that brings out her best – but I already worry about that next step. In the right environment, with open teachers and “friends”, these kiddos show their true gifts and flourish. It still amazes me how ignorant and closed minded our world can be. We too had/have medical trials – so much heaped on such little ones – it’s a lot to bear watching them fight through it all. I look forward to enjoying your writing – your humor caught my attention, but your story made me stay. Thanks for the laughs – I needed them!

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