Facing Stigma Without Shame

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Stigma, shame
24 Jan 2017

My son is sometimes hard to love. When he smashes dishes, when he slams doors, when he hits and shoves me, when he tries to bite me and my husband. When he attacks the teacher who tries to break up a fight between him and another boy. One day he will be stronger than me. At ten, he is already stronger and more vicious than his fifteen year old sister. When he fights, he doesn’t fight to protect himself, but to hurt and destroy, while she fights only to protect herself. Then, faced with the ruins he has created, the injuries, and ruined relationships, and the ruin of beloved possessions both hers and his, he cries over his loss of control. Then he is inconsolable. He begs me to throw him out of the house, because he sees this as the only way to protect those he loves.

I refuse to throw him out. I tell him that I am sad and angry over the wreckage and pain he has created, but I still love him. I tell him he is stuck with me loving him no matter what he destroys. He is also stuck within himself, unable to control himself, and unable to escape himself. When he cries, I comfort him. More and more often these days, I cry with him.

My son fears exploding, he fears losing control, and he fears his own tendency for destruction. Afterwards, he hates himself. He bangs his head against the wall or the floor to punish himself. He also bites himself. Sometimes he bites himself to avoid losing control. He knows he is old enough to hold onto himself, even when he is angry. My son has parents who are working fiercely to protect him from himself, and to protect others from his rage.

When my husband puts him to bed, my son asks him “How do you feel when I explode?” He asks my husband because he already knows how my daughter and I feel, because we’re the ones who cry.

“I feel sad,” my husband responds. “But I believe in you and I know that you will learn to control yourself one day.”

“You have to want to,” I say.

“You have to stop breaking my stuff, and annoying your friends,” my daughter says. “Otherwise you won’t have any friends.”

“You’re ten years old, and you have to want to learn how to control yourself,” I tell my son. “I can’t protect you from yourself.”

My son has been taking medication since he was five years old. In order to begin taking medication, he needed to learn how to swallow pills. I taught him to swallow by having him practice on candy coated chocolates. Today he considers it natural that he takes medication with breakfast and with dinner. This is the only reality he knows. As a parent, this is a choice I made for him in conjunction with his father, and his psychiatrist, who is one of the most respected child psychiatrists in the country.

At every age, and with every dose increase, I resisted the need for additional medication. Each time I agreed with reluctance and fear, fear both for the present and for the future. I only ever agreed in order for him to have relief from his own internal pressure, which expresses itself as intensified violence and self-mutilation. I exchanged pills for self-inflicted bruises and social alienation. As a result of a particularly violent incident, I finally accept the psychiatrist’s recommendation to start my son on mood stabilizers.

Shortly after this decision, I stop sleeping. It is not the thought of my son being expelled from school that keeps me up all night. That will be difficult but manageable. What keeps me up at night is the feeling building inside me that we are approaching a point of no return – that one day he may truly irreparably hurt somebody – a schoolmate, a member or our family, or himself. Then the world will collapse underneath me. I begin to dread the day that my son, who is already almost as tall as I am, will be bigger than I am, and I will no longer be able to constrain his violent outbursts. Inside I feel the clock ticking. One day is coming soon.

Across town, my son’s principal is also having difficulty sleeping at night. He agonizes over whether he can justify keeping my son in his school, or whether the dark shadow of violence that lurks at the edges of my son’s interactions with his classmates, will suddenly explode uncontrollably. Then he will be responsible for not having protected all the students in his care because of misplaced kindness to a single student, who also happens to be recognized for his genius and his startling and prodigious academic accomplishments by the faculty.

I understand the principal’s fear, but one day, when the phone rings and he screams at me to take my son, and never come back, a single thought runs through my head. The principal can walk away. He can expel my son, and be rid of his burden. However I know that no matter how painful this situation gets, I can never walk away. I am his mother.

Although the principal calms down, and decides he has only suspended my son for three weeks, I decide to look into other school options just in case. By the end of my son’s three week suspension, something has shifted. I am no longer the mother that received the phone call that day that her son was expelled. I do not want my son to be re-admitted to his former school. I don’t want to send my son back to a school where his success is measured by not fighting with other boys in the class yet the effort and internal struggle this act requires is not acknowledged. I want a school staff who can recognize him as a person with strengths and weaknesses which do not negate each other, and help my son learn how to deal with both sides of his nature.

In a world where success is defined as kids going from special educational environments into mainstream education, I now begin to consider the idea that my son, who has learned in mainstream education since nursery school, might actually benefit from a placement in a special education school. Yet choosing to go the other way is a choice that baffles city officials at the board of education. If my son can “pass for normal” why would I choose the stigma of a placement in special education over the privacy over mainstream education with medication and supportive therapy after school hours?

This is the challenge of raising a child whose challenges are emotional and therefore invisible. Although the challenges are no less real, no less substantial, and no less debilitating, than those of a child with physical limitations, the support network that exists to support parents who are raising a child with an emotional handicap is simply non-existent, at least in my community. Stigma, shame, and a fear for the implications that being more open may have on a child’s future keep parents from requesting the support they need.

It takes two months to convince the city officials that my son needs to be placed in an environment that can support his emotional needs as well as his academic needs. His brilliance is blinding. His brilliance conceals the emotional struggles beneath the surface, and the violent outbursts in our home. During these two months, he is home from school.

Throughout his two month leave from school, my husband and I navigate an emotional balancing act, a crushing financial burden, and a practical scheduling challenge. Model building lessons. Model kits to build in his unstructured hours alone at home. Day trips with his mentor, and ‘big brother’. Days out with his mother. Days at his father’s office. As two parents who maintain full-time work schedules throughout this entire time, we are exhausted and depleted from managing our sons’ special needs even while we continue to battle with the city for a school placement that will suit him. The reason this battle drags on for two months and becomes such a complicated decision involving the input of a psychiatrist, an educational psychologist, a clinical psychologist, a speech therapist, and an occupational therapist, is because my son’s old school does not support our decision to place him within a special education environment. They see it as an insult to his prodigious intellectual capabilities and refuse to fill out the paperwork to facilitate the transition. It is their opposition that makes it necessary to assemble this psychological army to fight for my son’s new school placement.

Once my son begins to attend a new therapeutic school environment, the depression, anxiety, and rage that he experienced in his old school begin to decrease. The violence born of his frustration and pain that we experienced at home decreases as well. Since he started in his new school, I have been able to significantly reduce the dosages of his medications, especially the ones whose potential side-effects concerned me the most. Yet what was decreased in the privacy of milligrams has been substituted by the stigma that accompanies placement in a special education environment. It was not an easy exchange, but by that time I made this choice I felt there was no other viable option.

As an adult, he may question my judgment. He may question the cost of this exchange, and the countless others I was forced to make on his behalf. By then we will know the side-effects and physical price that taking medication from such a young age has cost him. We will never know the story that might have been. We will never know the story that could have been had our choices as parents been otherwise.

As parents, we will all face a day when our children question our choices, and imagine the life they could have had had our choices been different than the ones we made. On that day, I hope to be able to answer my son’s questions with honesty and with patience and without shame.

An opinion in the Talmud states that someone born under the Mars constellation will have an innate attraction to drawing blood. An evil man will be overcome by his nature and become a murderer. An ordinary man will make peace with his nature and become a butcher. A righteous man will transform his weakness into holiness and become a mohel, who ushers others into the brit of Torah.

Where is the role of the child’s parents in the internal struggle of this child as he grows into adulthood? Shlomo in Mishlei teaches parents, Chanoch la-yeled al-pi darko. “Educate the child according to his nature.” I believe this means we must teach my son his strengths and his weaknesses, and not shelter him from the reality of his rage.

For my family this meant facing the fear of stigma and accepting the reality that my child needed help that neither I, nor the mainstream education that protected his privacy, could provide.

The words of this author reflect his/her own opinions and do not necessarily represent the official position of the Orthodox Union.