“I don’t deserve to be alive,” he lamented softly through tears. He was talking to his yoga teacher (who is also a therapist), I’ll call her Purple, in our living room - someone he has known for a year and a half and is one of his most-trusted confidantes.
Tigger had recently turned seven years old. This statement wasn’t a surprise, per se. I had watched his self-esteem plummet over the course of his first few months of attending all-day school. But his declaration broke my heart nonetheless and set alarm-bells ringing. As I moved toward a solution I reflected on how we got to the point where I was asking myself, “Is my seven year old suicidal?”
The first few weeks of school were unremarkable. He came home tired but seemed to be settling into his new place at the school and his new routine as expected. (He had attended half-day Kindergarten the year before.) The teacher was focused on community-building work, the days were filled with play and next to no academic work.
Things changed around the fourth week of the semester. The daily work was no longer focused on community. The schedule was: read, read, read, break, write, lunch, math, break, art/music/PE, science/social studies. It is an understandable schedule given the current climate of public education in the USA but one that is geared toward typical more flexible children. And Tigger is atypical: His social skills and restrictive repetitive behavior were assessed in the lowest 2% of same-aged peers, which earned him the label "autism" and his IQ was assessed in the top 2%, which is labeled "gifted." Combine this “Twice Exceptionality” with his energy level and way of learning (Visual-Spatial, not Auditory-Sequential) and it is easy to understand why he does not fit in traditional school.
Meltdowns
Every morning we spent an hour parenting him through meltdowns (sometimes sorrowful, sometimes angry) and desperate pleas of “I don’t want to go to school!” and “Don’t make me go!” We listened to his concerns, asked how we could help him, and helped him to find something to look forward to during his time at school. After school there were more declarations: “I’m not going to school tomorrow.” It felt like it was all we talked about...even on the weekends. We persisted and hoped that he would acclimate.
Turning Meltdowns Inward
It is February and I don’t think he has acclimated yet. He has merely stopped spending hours of the day arguing a losing battle. He stills says, “I don’t want to go to school” every day but it is no longer amplified with tears and angry outbursts. Instead, he seems to have turned those feelings inward.
The first evidence of his emotional masochism was mid-autumn. I sat with Tigger and his four year old sister, Twinkle. Their hair was still wet from bathtime and we were all dressed in pajamas. They had asked to sing our nighttime prayer together. It is a simple song, nothing but a chorus that repeats twice:
May the long time sun shine upon you
All love surround you
And the pure light within you
Guide your way on.
Typically, we offer the prayer to Tigger, then to Twinkle (or vice versa), and finally to someone else...family, friends, or strangers in need.
As always, we sat knee to knee in a tiny circle and put our hands in prayer position. We began singing in unison and I suggested, “let’s sing for Twinkle first.” And we did. In the second round, I suggested, “now let’s sing for Tigger.” And he collapsed, sobbing, in my lap.
“I don’t deserve prayers,” he said. Dumbfounded, I held him and let him cry. Twinkle gently rubbed his back and we listened to the song end.
That night we read a little longer, snuggled a little more, and then he fell asleep.
The same thing happens every time they ask to sing our prayers. So it is no surprise that he asks less and less to sing prayers.
Big Feelings Don't Just Disappear
Those big feelings must be scary for a young child...but I’m pretty sure he continued to have them. By December he was beginning to act out more at school. I was getting calls and emails from teachers, administrators, and the school counselor about his inability to behave as expected.
Those big feelings must be scary for a young child...but I’m pretty sure he continued to have them. By December he was beginning to act out more at school. I was getting calls and emails from teachers, administrators, and the school counselor about his inability to behave as expected.
That is when he confessed to Purple: “I don’t deserve love.” and the following week: “I don’t deserve to be alive.”
Purple handled his sorrow the way you might imagine. She was gentle, open, and loving. She told him stories about finding his inner light. After closing their practice for the evening, he seemed to have settled a little and sat with his sister to eat dinner while I debriefed with Purple. Neither of us were panicked but we were both concerned. This type of pessimism and negative self-talk is highly uncharacteristic of Tigger.
Research
When Purple had gone I led our nighttime routine. Then, after they were sound asleep, I did what I do best: look to learn. I wanted to be informed not only by my experience of watching my happy-go-lucky child become depressed but also by knowledge shared by experts in psychology, autism, and giftedness. This is what I learned:
Suicidal thoughts and behaviors are way more common in autistic children than neurotypical children.
In the past couple of years, larger studies have confirmed that suicidality is common among young people with autism. Last year, researchers reported that among 791 children with autism younger than age 16, 14 percent had either talked about or attempted suicide, compared with just 0.5 percent of children without autism. Another study of 102 children aged 7 to 16 with anxiety and high-functioning autism found that 11 percent had suicidal thoughts and behaviors. (SpectrumNews.org)
The article goes on to say that sometimes a child says suicidal things over minute transgressions, like being asked to turn off a video game and come to dinner. It is possible that in those circumstances the child is being melodramatic. However, while I didn’t think Tigger was going to harm himself that night, I think his language is an indicator for how dismal his inner world must be.
Information regarding suicide in gifted population is less straight-forward. While there has been no correlation made between giftedness and suicide, the overexcitabilities common to gifted persons make them candidates for emotionally volatile lives, which may then lead to suicide. More research is needed.
I, too, needed more research. So I turned to a friend who my children call “Uncle” and who is a school psychologist. When my husband was home, I drove the mile to Uncle’s house and sat at his dining table with him. One of the best listeners I know, he sat quietly while I told him my story. Before turning conversation to him I told him that I believe that Tigger’s experience at school is the reason for this behavior at home because it is the only new thing in our lives. Then I asked him to draw from his expertise as a school counselor to guide me.
Among the many school-related ideas he offered was something called the “Suicide Risk Assessment.” Every school counselor should know what it is and should perform the assessment without dispute. The first thing I did the next day, which happened to be the last day of school before winter break, was to call the school and request a Suicide Risk Assessment.
Not Knowing
The school psychologist walked my son out at the end of the day so she could hand-deliver the assessment to me. She smiled politely and told me that he seemed to have no idea what she was talking about when she questioned him about hurting himself. Then she said, “you just need to give him new language to express those feelings.” (!) As if we had not been doing therapeutic work to teach him social-emotional skills and mindfulness for the last three years!
The school psychologist walked my son out at the end of the day so she could hand-deliver the assessment to me. She smiled politely and told me that he seemed to have no idea what she was talking about when she questioned him about hurting himself. Then she said, “you just need to give him new language to express those feelings.” (!) As if we had not been doing therapeutic work to teach him social-emotional skills and mindfulness for the last three years!
This woman who has spent a handful of hours with my son seemed to suggest that I was overreacting. Intuition told me I was being regarded as an over-reactive and inept parent. Then I realized that she may have less experience with and knowledge of Twice Exceptionality than I do. I thanked her and I turned with Tigger and Twinkle to walk home.
Walking into Traffic
That night after dinner I was cleaning the kitchen when my children began to argue. Tigger’s anger was explosive and I stepped in to keep him from hurting Twinkle. I yelled, “NO! STOP IT!” Then he said it.
At the top of his voice, strangled with tears, he said, “I’m going to walk into traffic.”
I dropped to my knees in front of him. “You seem so amazingly sad. But why did you say such an alarming thing?”
“Because then you will be sorry. You will have to love me.”
My heart swelled. My voice choked with tears. “You want to feel loved.”
“Yeah!”
I looked into his tear-streaked face and my mind clicked in new understanding. He didn’t recognize love.
“Do you know all the things I do because I love you?” I asked.
“No.”
“I cook your favorite foods several times a week because I love you.”
“I do the laundry because I love you.”
“I read books to you because I love you.”
“I drive you to karate because I love you.”
“Most of the things I do I do because I love you.”
His shoulders relaxed and said, “Oh. I didn’t know all that.”
“Would you like me to tell you when I do something because I love you?” I asked.
“Yes,” he replied.
And that is how I began to teach him anew about love.
Softening
The first thing I did to teach him about love was to start saying, “I’m doing this because I love you” at every opportunity. I said it when I set his plate of food on the table at dinner time. I said it again when I fetched a cup from the cupboard for him, and again when I helped him carry his things upstairs to his room. Every time I said it, I felt him soften a bit.
What I hadn’t expected is that I began to soften, too.
Walking through the yard to put the kitchen trash into the garbage can, I noticed his hat had been partially buried in snow. Two days before I would have thought that it was a good natural consequence that his hat would be cold because he had not brought it inside when I had asked him. The new me thought, “I’m going to do this kind thing because I love him.” I circled back and peeled the hat that was crunchy with ice from the snow. I shook it out and brought it inside to thaw.
I found myself doing more kind things for him and in doing so feeling more kindness for him. Again I started to imagine his experience of life - that is different from the norm - and thought about how hard it must be to recognize loving behavior when you are preoccupied with objects. Not only has self-care been a challenge because of his disinterest in learning through imitation, but so, apparently, has love.
Love Between People
That must be because love between people is a social endeavor. It is often marked by small gestures of affection and kindness, easy-to-miss body language cues, and, in parenting, the work of life (cooking, cleaning, et cetera).
That must be because love between people is a social endeavor. It is often marked by small gestures of affection and kindness, easy-to-miss body language cues, and, in parenting, the work of life (cooking, cleaning, et cetera).
And I have to imagine that the mysterious nature of love is even more perplexing for children (and adults) who have an atypical way of socializing, like Tigger. So I that is how, “I do this because I love you” has become an often-used phrase in my parenting. It joined the ranks of “I love you,” “Please,” “Thank you,” and “I’m sorry.”
For two and a half weeks of winter break, I made a point of filling his bucket. We were entirely free of suicidal declarations, despite the typical day-to-day conflict of living with intensity. Then school started and after two days I heard it again. “I’m going to walk into traffic!” he yelled as he stomped toward the front door in tears.
My heart sank, again. “Something needs to change,” I thought. And the following week something small happened.
Something Small
It was a Wednesday, yoga day. When Tigger walked out of school at the end of the day he seemed lighter than usual. We walked home without the typical bickering over which trail to take. Then his yoga session with Purple was beautiful. At the end, Purple said that she had noticed the change, too. She asked him, “Tigger, do you know what happened that helped you have such a nice time today? I noticed you didn’t say anything mean to yourself. You were so positive!” His response: “Huh. I don’t know.”
I had a good hunch. “What did you do at school today?” I asked.
He confirmed my suspicion by launching excitedly into a description of two of his pull-out interventions. Instead of diving into the prescribed reading assignment in the Talented and Gifted class, he got to lead the beginning of class and they built with his electronics. Then in Speech Therapy, which he attends to work on social pragmatic language, his therapist brought in solar-powered building toys.
It was that simple. Allowing him to learn what and how he wanted for a five minutes and 35 minutes had had a lasting positive influence. It was something I had requested in the autumn but, understandably and disappointedly, had been denied.
Instead Of
Instead of feeding his intellect, they were starving it because of the misguided notion that a child so young who cannot read is unable to learn deeply in other ways.
Instead of nurturing his heart and his desire for deep interpersonal connection, they broke it by using canned social-emotional tools like a "behavior support plan" and "think sheets" instead of nonviolent communication and nature baths.
Instead of considering him as a whole child who is Gifted as well as Autistic, they ignored some of the most salient and effective tools (that I have found) for helping him succeed.
Instead Of
Instead of feeding his intellect, they were starving it because of the misguided notion that a child so young who cannot read is unable to learn deeply in other ways.
Instead of nurturing his heart and his desire for deep interpersonal connection, they broke it by using canned social-emotional tools like a "behavior support plan" and "think sheets" instead of nonviolent communication and nature baths.
Instead of considering him as a whole child who is Gifted as well as Autistic, they ignored some of the most salient and effective tools (that I have found) for helping him succeed.
How Bad is Bad Enough?
The question that now burns to be answered is: what is good enough? Is 2.5% pull-out enough? That leaves 97.5% of his time spent enduring top-down sequential lessons without no support staff - something I have never had success with at home. And from what I understand there is little success with it at school. His behavior is becoming increasingly problematic, disruptive, and unsafe.
He is not “holding it together” at school and then falling apart at home any more. He is falling apart at school, at home, at karate, at handwriting… Which brings me to the next logical question: how bad is bad enough? The way he talks about coping with his stress varies from hurting himself to hurting the people at school. (He has literally threatened, “I’ll show them.”) He’s only seven years old!!
Cost-Benefit Analysis
It seems like the cost-benefit analysis of attending public school has tipped. The amount of time I spend at home mending the social-emotional damage done outweighs the academic hoops he has jumped through. In the limited time we have before and after school, I squeeze in time for him to pursue his own passions, to get enough exercise, and to connect with friends who accept him. I counsel him regarding things his teachers have said to him (typically the common threat of telling mom/dad/principal about his bad behavior) or what other children have lied to him about (“I changed the brain in your best friend’s body to be a bad guy”). But I’m not sure any amount of “I do this because I love you” can account for the constant and pervasive but unspoken messages he receives at school that he is different, his behavior problematic, and he’s more trouble than he’s worth.
His change in sleep, overeating, and loss of interest in things that once brought him great joy are all indicators of depression. The depressed behavior paired with the suicidal ideations he has already expressed have us all worried, including his primary care physician and therapist, but not the school (at least not enough to do something about it).
Cumulative Stress
The most convincing outside perspective came from his therapist who has five years experience leading the ASD program at Kaiser and now treats autistic children for mental health. She explained that her experience with kids like Tigger is that mental and physical health will not get better without making a dramatic change and that it is likely that they will deteriorate to a point of no return if we try to wait it out. She explained that autistic children do not have brain structure that is as flexible as neurotypical children. Second grade, which is often easier for everyone, is only harder for autistic children because of cumulative stress. Third grade is harder still. And she has only seen the necessary changes made because of legal action brought to the school district.
So as much as we would like to fight the fight for neurodiversity, we cannot in good conscience do it while we drag our own child through the mud. Instead, we have decided to homeschool Tigger. We will give it a year and if, by then, he has stopped proclaiming that he is going to walk into traffic then we will know it was the right thing to do.
Listen
[The studies cited were published in 2013 the Journal for Autism Developmental Disorders and Research in Autism Spectrum Disorders.]
Read more about The Difficulties of Being Gifted on the Blog Hop...
I could have written this. I almost wrote this. But my 2E reads everything I put on my blog and I knew she would freak. I settled for the glossy version instead :)
ReplyDeleteBeautifully written. You are such a great mom.
Thanks. My son knows about my concerns. He knows this whole process that I experienced and he knows I write about our life together to help others.
DeleteThis sounds all too familiar, except that my daughter was 6 when her suicidal ideation started. Thankfully the school were concerned and caring but they were highly limited in the extension activities they could offer to keep her engaged. We finally started homeschooling pretty much on her 9th birthday (she's coming up 11 now) and it has transformed all of us individually as well as how we relate to each other. I hope you all have a good an experience as we are having.
ReplyDeleteThank you for sharing your story in such detail. I read with tears in my eyes. I remember how shocked I've felt on the few occasions my son said, 'I just want to die'. That was before I discovered this community. It's still tough helping him manage his intense feelings in a world that doesn't cater for his needs, but it helps no end knowing what's going on and that it's not about my parenting or that there's something wrong with him.
ReplyDeleteOh my! The entire time reading I was hoping you'd switch to homeschool. So glad you are doing this for him, and your family! You are an outstanding parent! Big, big hugs.
ReplyDelete