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The Love of a Mother and the Pain of Transition

My daughter turned 18 years old last month. My son will be 16 years old at the end of this month.  It is a weird feeling for me.  Lately, I find myself wanting to cry more often. To be honest, I am crying right now.  I am also so proud of them.  My babies . . . .

“Transition” is the term used in the education system for when a student is moving out of high school and into the adult world. In Native American culture, the term “transition” refers to death.  As a parent who has been assisting both my children in the transition process for the past several years, I will say there is a sense of death, but not in the traditional sense.  Transition, as defined in the education system, is a period of great change.  There are aspects of the life that you have had that are coming to an end, but there are also other aspects that are being birthed into existence. 

My children have been blossoming into two amazing young adults. It is a painful and wondrous journey from a parent’s perspective, but also from the perspective of the developing child. The world can be a terrifying place, especially if you live in a world that is not designed for you. 

To be given the privilege of caring for a young life, to support that life, to encourage and protect that life’s growth and development is something I will cherish for eternity. This privilege is also an incredibly difficult one to bear. 

The process of transition into adulthood isn’t just a journey that a developing child goes through. The parents also have to go through a transition as well.  My job description as a mother has shifted over the years as my children have been maturing.  These last two years in high school have seen a major shift in my job description as a mother.

I have had to make myself step away from my babies. My job as their mother has been to give both of them roots, to assure them that they were protected and cared for, and to teach them how to fly on their own. It has come to the point where I need to let them spread their wings.  It is a terrifying endeavor for a mother, particularly for a mother who has raised her children on her own for the last six years. 

I am scared . . .

My children have multiple disabilities. Autism is only one. Mental illness affects their lives at so many levels.  Then there is the trauma and grief of having a father who ran from them. 

My baby girl is graduating high school in June.  She is already a registered voter.  She doesn’t have her driver’s license, but she plans on eventually getting one. She has been researching universities and scholarship information for some time now.  She has dreams of working in the field of environmental science.  I remember when she first looked straight into my eyes.  She was just born and my doctor had placed her on top on my chest while the umbilical cord was cut.  She was so beautiful, blue eyes and a full head of hair.  She didn’t cry until she was given a bath. She would just stare right into you with those intense blue eyes.  She did it to the pediatrician at the hospital as well.  He commented that he had never seen a more intense baby.

My son, my beautiful son, is determined to eventually earn a PhD in Astrophysics. I almost lost him due to pregnancy complications. I was 21 weeks along when everything went to hell.  My body fought so hard and gave everything it had to keep the pregnancy going.  I was almost paralyzed.  He eventually was born healthy at 37 weeks.  I had bones break during his delivery. He came out screaming. He was alive and breathing. That was all that mattered.  My son was alive!  

When I think of transition, I envision the process of Mitosis. At first there is a single cell, the parent cell.  There comes a point in the life cycle of that cell where the chromosomes are replicated, the information and tools needed to live independently is prepared to be passed on to the next generation. Those replicated chromosomes then align in the center of the cell with centrioles moving towards the poles of the cell.  This is the part where the parent cell is getting ready to separate the replicated chromosomes, all that information and tools, in preparation for transition.  Then the painful pulling apart begins.

The parent cell needs to allow the next generation to move ever so slowly away from the protection that the parent cell can provide.  In this analogy, my children and I are at different points in Anaphase.  My daughter and I are closer to Telophase than my son and I are.  At some point all three of us will reach Cytokinesis. This is where my children will fly on their own.  

Mitosis

There are times I am finding it hard to breathe when I think about what is coming. I know that they must be allowed to fly on their own.  They need to have agency of their own lives.  For the last six years it has been about survival, processing trauma and grief, and finding out that we are all stronger and have more resilience than it ever occurred to us. 

I will admit that I am scared about being alone. My children are so much a part of me that I need to redefine who I am after they move on with their lives.  Not only have I been a single mother, I have also been their primary teacher, their confidant, their protector, the one family member that they could count on.  I need to learn how to branch out.  I plan on going back to graduate school and earn a second Master’s degree.  I feel that I need to do this. I need to find a new path that will allow me to live a life that is not centered on the wellbeing of my children.  I need to allow myself to spread my wings as well, but at the same time maintaining a support structure so my children will always feel that someone has their back. 

I have had to struggle on my own for so long. I don’t want that for my children.  I don’t want them to feel alone in the world with no one to turn to.  I will be there for them for as long as I can and I will continue to teach them the tools needed to make it through their days on this confusing planet.  That is a part of my job as a parent that will never change.

I raise my glass to all you parents out there struggling through your own transition and to those who will be facing it in the future. The journey is hard, but it is well worth it.

“Change is situational. Transition, on the other hand, is psychological. It is not those events but rather the inner reorientation or self-redefinition that you have to go through in order to incorporate any of those changes into your life. Without a transition, a change is just a rearrangement of the furniture. Unless transition happens, the change won’t work.”

– William Bridges

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Toxic Shame – You might struggle with it and not even know it!

(Trigger Warning – Mention of suicide and abuse.)

“Toxic Shame”, just reading those words makes me cringe. I didn’t know until recently that there was a term for it, but I am very familiar with the effects and damage that toxic shame causes.  In my experience, toxic shame can cause generational damage as well.

What is toxic shame?

To answer that question, I first have to explain what ordinary shame is. According to Mary C. Lamia Ph.D. , “as a self-conscious emotion, shame informs us of an internal state of inadequacy, unworthiness, dishonor, regret, or disconnection. Shame is a clear signal that our positive feelings have been interrupted. Another person or a circumstance can trigger shame in us, but so can a failure to meet our own ideals or standards.”

brene brown

In the article, What is Toxic Shame? , it is the shame that has become toxic.  That level of shame is described as “internalized shame” that hangs around and alters our self-image. For some people, toxic shame can consume their personality. For others, the shame lies beneath their conscious awareness, but can easily be triggered.

The article further explains that “toxic shame differs from ordinary shame, which passes in a day or a few hours, in the following respects:

  • It can hide in our unconscious, so that we’re unaware that we have shame.
  • When we experience shame, it lasts much longer.
  • The feelings and pain associated with shame are of greater intensity.
  • An external event isn’t required to trigger it. Our own thoughts can bring on feelings of shame.
  • It leads to shame spirals that cause depression and feelings of hopelessness and despair.
  • It causes chronic “shame anxiety” – the fear of experiencing shame.
  • It’s accompanied by voices, images, or beliefs originating in childhood and is associated with a negative “shame story” about ourselves.
  • We needn’t recall the original source of the immediate shame, which usually originated in childhood or a prior trauma.
  • It creates deep feelings of inadequacy.

“If not healed, toxic shame can lead to aggression, depression, eating disorders, PTSD, and addiction. It generates low self-esteem, anxiety, irrational guilt, perfectionism, and codependency, and it limits our ability to enjoy satisfying relationships and professional success.”

 I understand all of this.  Shame and guilt have been used as weapons to manipulate me, to control me, to make me comply with another’s wishes, to make me submit.  It is an awful experience and it stays with you.  For much of my life I had no defense against this.  I was conditioned to be a co-dependent early on. I was taught that my needs came secondary and that I must never disappoint.  It was the end of the world if I disappointed, so I complied, much to my detriment.

Taking responsibility for things that aren’t yours (false responsibility) and toxic guilt are two things that often go hand in hand with toxic shame. A person ends up becoming overly agreeable which opens them up to being easily manipulated. Shame corrodes the person from the inside and can affect all areas of their life.

This is not something that just goes away. My conditioning followed me well into adulthood. Mix in my autistic brain insisting that “rules are rules”, my unwavering loyalty, my need to help others, my fear of disappointing people, my social anxiety traits, and my full-blown Generalized Anxiety Disorder as well as never being taught growing up how to advocate for myself (I learned as an adult) and I ended as someone who has, overtime, developed Complex-PTSD from being subjected to years and years of emotional neglect and abuse.

Keep in mind that shame and guilt are two different feelings.  Brene’ Brown, researcher-storyteller, explains in her TEDtalk – Listening to Shame:

Shame is a focus on self, guilt is a focus on behavior. Shame is “I am bad.” Guilt is “I did something bad.” How many of you, if you did something that was hurtful to me, would be willing to say, “I’m sorry. I made a mistake?” How many of you would be willing to say that? Guilt: I’m sorry. I made a mistake. Shame: I’m sorry. I am a mistake.

I was not the way they wanted me to be.  My masking took a huge toll on me, but, in my mind, I had to comply. It was how I avoided the shame and guilt trips.  If I just complied, then I was spared the emotional gut punching. By complying and trying to please, maybe I could feel valued and not worthless, at least for a little while.  If I objected in anyway, advocated for myself in ways that contradicted them, and/or insisted on maintaining my personal boundaries, then the shaming would begin. The shaming is still happening, but instead of complying, I get angry.

My neurology and my ability to parent have been attacked for years.  This started when I had had enough and drew a metaphorical line.  I wasn’t going to tolerate being treated like that anymore.  I should never have had to fight those closest to me in order to have my individuality and identity, but I did fight for over three decades.

How does toxic shame become generational?

Parents can unintentionally or intentionally transfer their shame to their children through verbal messages or nonverbal behavior. If they were subjected to toxic shame, then they might project that shame onto their own children and the cycle continues. This is even truer when a parent has an untreated personality disorder or untreated mental health issue. Some examples of this include: a child might be feeling unloved in reaction to a parent’s depression, absence, indifference, or irritability or feel inadequate due to a parent’s competitiveness or over-correcting behavior.

Toxic shame makes it very difficult for a person to accept themselves. A person can find that they hate themselves, that they feel absolutely worthless and have no value what so ever. If this person is also autistic who is trying to live in a world that is not designed for them then that feeling of worthless and emotional pain only grows exponentially.

Up to 50 percent of autistic adults have considered ending their own lives, a rate two to three times that seen in the general population (1).  There was a time that I wanted to die.  I wasn’t suicidal. I just wanted my physical, mental, and emotional pain to end – more on that here.

According to Luna Lindsey:

Shame sends two of these three messages: 

  • I am intrinsically unacceptable which will make me always be alone
  • I am inherently unfixable and therefore will always be a source of trouble for those who do love me.

And shame (and resulting anxiety and depression) causes so much pain, that the third ingredient is an easy leap. After suffering long enough, suddenly death seems like a relief.

Luna continues on and suggests some possible solutions:

Affirmations – “For starters, when I feel this way, I often find relief from reading the well-crafted and autism-specific affirmations by Liane Holliday Willey which are posted on the WrongPlanet forums. These work most of the time, except for when, for whatever reason, I’m feeling overly cynical and don’t believe them.”

Self-Acceptance – “Because of these differences, there are many behaviors that will always be difficult or even impossible for NTs to accept, and you have to accept that, too.”

Identify your strengths (Aspie Superpowers) – “These are examples of how ASD makes you particularly awesome. They are the other side of the coin, your X-ray vision to the kryptonite. For examples, see the two links at the beginning of the paragraph. Come up with your own list. During shame-filled times, go over them and remind yourself of your strengths.”

Consider coming out –According to Brené Brown, shame requires secrecy, silence, and judgement to survive. Without these things, it will die. Consider finding a safe space, free of judgement, either with safe family, or safe friends, or with a therapist, or online at a place like WrongPlanet. Bring your shameful moments to light. If you feel judged, then go back into your shell until you do find someplace safe.”

To close, I would like to share a poem by Tara Brach, Radical Acceptance:

May all beings

Heal and awaken

Into the love and awareness

That holds and honors

The fullness of being.

(Poem found at The Power of Mindful Empathy To Heal Toxic Shame)

 

References:

  1. Segers M. and J. Rawana Autism Res. 7, 507-521 (2014) PubMed

The Problem with Isms – Wreaking Havoc Across the Planet

I am sitting here at my computer thinking about isms.  There are so many isms in the world and these isms can wreak havoc upon the people of this planet.  According to The Phrontistery, there are around 234 different isms, each representing a philosophical, political or moral doctrine or a belief system. 

Our current society is obsessed with compartmentalizing things into definitive categories or labels. Everything has to be put in a box.  If you don’t fit into a predetermined box, society will try to shove you in one whether you like it or not.  Society wants things to fit in these nice little predetermined boxes.  This is where the isms come into play. Isms are behaviors and some behaviors can be problematic. Isms can be used to exclude some voices, and, at the same time, raise other voices up.

When an ism is a belief system, then that ism generally becomes a part of your identity. According to Scott H. Young, “humans are funny creatures when it comes to our identities. Having a belief has little baggage. You will defend the belief when it is reasonable, and abandon it given enough contrary evidence. Being a belief, or “-ist”, is different. The belief becomes something to defend zealously, the way you would defend a part of your body under attack.”

Mr. Young continues by saying,

Your level of certainty in a belief isn’t related to whether it is a part of your identity or not. I have far greater conviction in the force of gravity than atheism or vegetarianism, yet I don’t call myself a gravitist.

The difference, to me, appears to be a more social one. People decide they are an “-ist” as a way of distinguishing themselves from others. Gravitism doesn’t exist because there aren’t agravitists, who deny the existence of gravity.

“Isms” develop as a way to separate people into distinct tribes. The downside is that tribal logic isn’t rational. Instead of trying to decide which belief system is true or most pragmatic, people defend their tribe at all costs.

The damage of “isms” is obvious in politics. Instead of rationally trying to decide on the best way to govern, most effort is spent on partisan battles.

Racism, for example, is a very, very problematic behavior.  This type of behavior needs to be taught.  We are not born being racists.  We are also not born being patriots, feminists, sexists, nationalists, or nihilists. A person has to be taught to be part of or against a particular ism.  

“The difference between patriotism and nationalism is that the patriot is proud of his country for what it does, and the nationalist is proud of his country no matter what it does; the first attitude creates a feeling of responsibility, but the second a feeling of blind arrogance that leads to war.” – Sydney J. Harris

I have learned that misogynists tend to be against feminists and vice versa. Patriotism and nationalism are not the same things.  Racism is so deeply imbedded into our society that people don’t even acknowledge that racism is there.  It is just day-to-day business.  Sexism is also deeply imbedded in our society.  Remember, sexism is defined as “prejudice or discrimination based on sex or gender, especially against women and girls”.

The damage of isms is obvious to those in the disability community in the form of ableism.  People with disabilities are considered the world’s largest minority group. Currently around 10% of the world’s population, or roughly 650 million people, live with a disability.  I have written about ableism before – Ableism in Society – Autism and Mental Illness.

Ableism is another ism that is profoundly imbedded into our society, so much so that people don’t even realize that they are being ableists. Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities.  Ableism is also the belief that people with disabilities “need to be fixed or cannot function as full members of society” and that having a disability is “a defect rather than a dimension of difference.”  

 Ableism is intertwined in our culture. Ableism evolves within a person and spreads within a society due to beliefs of what having a disability means or does not mean, how able-bodied people learn to treat people with disabilities, and how people with disabilities are often not included at the table for discussions and decision making about their own lives.  I will state again, isms can be used to exclude some voices, and, at the same time, raise other voices up. Ableism silences the voices of people with disabilities in favor of able-bodies voices.

Ableism is considered the root cause of the marginalization and discrimination disabled people are subjected to. People with disabilities need to understand their value. It is important that people with disabilities feel valued and wanted. In order to do so, it is necessary for us, as a society, to check our ableist tendencies, internal and external. Racism kills. So does ableism. It kills dreams.  It kills opportunities.  It can also kill a person.  For more on this, go to Ableism Kills.

More Information about Ableism

Ableism: How to End the Prejudice that No One Talks About

Anti-Oppression: Anti-Ableism

Ableism/Language

Stop Ableism

Abuse and Its Many Forms

(Content Warning:  Discussion about the different forms of abuse and a personal story.)

Abuse can come in many forms. Some forms are so imbedded into society that they are often overlooked, ignored, and/or dismissed. So, what constitutes being abused?  According to the Lanark County, Ont. Coalition against Family Violence, a single act may not constitute abuse, but if someone is doing something to harm or control you then you are being abused. You have the right to be treated with respect and to feel safe in your home.  Abuse is a violation of an individual’s human and civil rights and in the worst cases can result in death.

The East Riding Safeguarding Adults Board has compiled a list of ten types of abuse:

  • Discriminatory
    • race
    • gender
    • gender identity
    • age
    • disability
    • sexual orientation
    • religion
  • Psychological
    • emotional abuse
    • threats of harm or abandonment
    • deprivation of contact
    • humiliation
    • blaming
    • controlling
    • intimidation
    • coercion
    • harassment
    • verbal abuse
    • cyber bullying
    • isolation
    • unreasonable and unjustified withdrawal of services or supportive networks
  • Financial or material
    • theft
    • fraud
    • internet scamming
    • coercion in relation to an adult’s financial affairs or arrangements, including in connection with wills, property, inheritance or financial transactions
    • the misuse or misappropriation of property, possessions or benefits
  • Organizational
    • neglect
    • poor care practice within an institution or specific care setting such as a hospital or care home
    • poor practice in relation to care provided in one’s own home
  • Neglect and acts of omission
    • ignoring medical, emotional or physical care needs
    • failure to provide access to appropriate health, care and support or educational services,
    • the withholding of the necessities of life, such as medication, adequate nutrition and heating
  • Physical
    • assault
    • hitting
    • slapping
    • pushing
    • misuse of medication
    • restraint or inappropriate physical sanctions
  • Sexual
    • rape
    • indecent exposure
    • sexual harassment
    • inappropriate looking or touching
    • sexual teasing or innuendo
    • sexual photography
    • subjection to pornography or witnessing sexual acts
    • indecent exposure and sexual assault or sexual acts to which the adult has not consented or was pressured into
  • Domestic
    • psychological abuse
    • physical abuse
    • sexual abuse
    • financial abuse
    • emotional abuse
    • so called ‘honour’ based violence
  • Modern slavery
    • slavery
    • human trafficking
    • forced labour and domestic servitude

Traffickers and slave masters use whatever means they have at their disposal to coerce, deceive and force individuals into a life of abuse, servitude and inhumane treatment.

  • Self-neglect
    • a wide range of behaviour neglecting to care one one’s personal hygiene, health or surroundings and includes behaviour such as hoarding

NO ONE DESERVES TO BE TREATED LIKE THIS!!! NO ONE DESERVES TO BE ABUSED!!!

GrieveThis is a very difficult topic to be writing about. I grew up in an emotionally and verbally  abusive home. I was in an abusive marriage for 15 years.  I married want I knew.  That was my “normal”.  Everyone who has survived an abusive situation has a story as to why they stayed.  Everyone does.  I am no different.

Growing up, I didn’t feel safe and I felt there was something wrong, but I didn’t know what it was. I didn’t know the language.  All I knew was that I felt safer staying in my room by myself and listening to my music.  It wasn’t until I become a teacher and took classes on abuse that I started to learn the language.  Even then it took my years to finally break free of the situation I had found myself in.  I was taught to just deal with the verbal abuse.  I was taught that the worse thing I could do was disappoint my family.  I had to comply with whatever I was told.  I was conditioned to be a codependent and it was my job to keep everyone else happy.  I learned at a young age that my needs didn’t matter, that my voice didn’t matter.  This continued way into adulthood and into my marriage.

A part of me wants to write about all the different things that were done to me in the name of love, or at least, that was what I was told. It was for my protection, it was because a person cared, it was because I needed to be a better daughter or a better sister or a better wife or a better mother.  That I couldn’t be trusted in making decisions for my children or that I was broken or that I was just a bad person.  The list goes on.

My ex-husband has admitted that he was trying to contain me, to keep me in a box. Letting me spread my wings was frightening to him.  In his mind, by keeping me in a box, he was protecting me.  I know my mother thinks in those same terms.  In her mind, I  needed to be protected.  In order to do that, in her mind, I needed to be controlled and contained.  I was not allowed to be me.  I feel like a shadow around my parents. Something that just stands in the corner until requested.  I feel the most disabled when I am with them.

Remember, you have the right to be treated with respect and to feel safe in your home.

I have a parent who attacks my neurology. This parent is very ableist and doesn’t even know or wants to know what ableism is. This parent is about control and will manipulate (covertly and overtly) to get it. This parent has problems, but is in full denial.  My ex-husband has untreated mental health problems and a destructive personality disorder. He did get a full psychological evaluation, but refuses to get professional help. My ex-husband and this parent are both passive aggressive, manipulative, and emotionally abusive. My other parent is verbally abusive.  This parent’s anger management problem is right out there in the open.  My ex-husband also has anger management problems, but his is silent and terrifying.  As I said before, I married what I knew.  This was the world that I grew up in and remained in it as an adult.

Four and a half years ago I had had enough. My marriage had already ended.  I had learned that I was stronger and more resilient than I even realized.  I drew a line with my parents, a healthy boundary. I would no longer tolerate the ongoing abuse. I cut off contact to my parents.  Not completely, though, we still email every so often, but I don’t feel safe with them.  I have tried multiple times to reason with them, but was told they are not going to change.  I had to think about myself and my children.  It all really hit me when my children began asking each of their counselors why their grandparents treated me the way they did.  I had to make a change for my own welfare and for my children’s future.

AbusersSomewhere in the back of my mind I knew growing up there was a problem with my family. The cycle of abuse goes back several generations on both sides. I had promised myself that the abuse stopped with me. I was not going to allow the cycle of abuse to continue with my children.  Unfortunately, their father had other ideas. He emotionally abused and neglected them.  The good news is that his cycle of abuse was caught earlier.  My children have been in counseling since they were little learning to cope with the cards life has dealt them.  They are stronger and more resilient for that earlier intervention.  I am still determined to make sure the cycle of abuse in my family stops with me.  I will not allow the abuse to continue.

What can you do?

  • Educate yourself.
  • Believe when someone tells you something is wrong. I tried to reach out for help many times, but no one would believe me.
  • Listen with compassion.
  • Don’t be judgmental.
  • Encouragement is key.

Here is some helpful information about stopping abuse:

Here are some additional blogs that I wrote about trauma and abuse:

 

Trauma Does Not Define You

In Greek, trauma means “wound”. Originally trauma referred to physical wounds, but nowadays trauma also refers to emotional wounds. The psychological reaction to emotional trauma also has a name.  It is more often referred to as post-traumatic stress disorder, or PTSD.  I am very familiar with PTSD.  I was diagnosed with it about 14 years ago. This original diagnosis arose from a horrible medical trauma that I endured and also from the behavior of those closest to me at the time.  Since then, my diagnosis has changed to Complex-PTSD due to what I have come to realize were years of emotional and mental abuse at the hands of my ex-husband and what I endured as a child growing up.  I married what I knew. 

Growing up in a household where verbal and emotional abuses were tolerated really confused my autistic brain. I was told I was loved, and I believed it, but the behavior was not what you do to people you love. As a teacher, I learned the phrase, “at least he is not hitting me”, is a red flag that something is very wrong.  I heard that phrase over and over again growing up.  I was taught to comply, to make excuses.  I was conditioned to be a codependent.  Talking about any of this outside and inside the family was and still is discouraged.  I knew something was off with my family, but I didn’t know what it was.  It just felt uncomfortable.  Yet, I still married what I knew.   

Emotional abuse is insidious. It starts slow and under the radar.  You have no idea what is really happening, only that something doesn’t feel quite right.  The perpetrator may even pull back and be charming again when you call them out on something.  Everything might seem perfectly fine again, but over time that uncomfortable feeling starts up again and it gets worse and worse each time.  It is incredibly confusing.  Before you know it, you find yourself trapped telling yourself that you just have to wait for him to cycle back to being the man you married.  This is what is called the cycle of abuse.  You find yourself holding out for the good times to come back, and that is the perpetrator’s biggest weapon, playing on your hope. You find yourself holding on for something that will never come, real peace and real love.   

As a child, I would wait out the aggressive verbal outbursts and the passive aggressive manipulation until we could feel like a family again.  While growing up, I had no idea I was in this perpetual state of fight or flight. I was always on edge and preferred to be in my bedroom.  Now I understand why I did isolated myself, but back then, that was my “normal” and it was exhausting and frightening.  As a spouse, I did the same thing. I waited out the passive aggressive emotional abuse until the good times returned.  I married what I knew.

According to SAMHSA, adverse childhood experiences (ACEs) are stressful or traumatic events, including abuse and neglect. These experiences may also include household dysfunction such as witnessing domestic violence or growing up with family members who have substance use disorders. Having your ACEs score is like having your cholesterol score.  The score is a guideline to help you learn your risk factors for particular things. 

How childhood trauma affects health across a lifetime | Nadine Burke Harris (TEDtalk – video)

Childhood trauma isn’t something you just get over as you grow up. Pediatrician Nadine Burke Harris explains that the repeated stress of abuse, neglect and parents struggling with mental health or substance abuse issues has real, tangible effects on the development of the brain. This unfolds across a lifetime, to the point where those who’ve experienced high levels of trauma are at triple the risk for heart disease and lung cancer. An impassioned plea for pediatric medicine to confront the prevention and treatment of trauma, head-on.ACEs Impact

The Impact

ACEs scores are strongly related to the development and prevalence of a wide range of health problems throughout a person’s lifespan, including those associated with substance abuse.

ACEs include:

  • Physical abuse
  • Sexual abuse
  • Emotional abuse
  • Physical neglect
  • Emotional neglect
  • Intimate partner violence
  • Mother treated violently
  • Substance misuse within household
  • Household mental illness
  • Parental separation or divorce
  • Incarcerated household member

The ACEs study used the top ten reported adverse childhood experiences when designing the questionnaire, which consists of ten questions and involves your life prior to 18 years old.  Five questions are personal — physical abuse, verbal abuse, sexual abuse, physical neglect, and emotional neglect. Five questions are related to other family members: a parent who’s an alcoholic, a mother who’s a victim of domestic violence, a family member in jail, a family member diagnosed with a mental illness, and the disappearance of a parent through divorce, death or abandonment. Each type of trauma counts as one.

I went through the questionnaire  and had a score of 3/10. I had both my children take the questionnaire as well.  Their scores varied.  My daughter had a score of 8/10.  My son first had a score of 4/10, but then he adjusted some of the questions to reflect one parent, his father, and he ended up with a score of 6/10.  I knew their scored would be higher than mine.  They have dealt with a divorce and a father who emotionally neglected them and emotionally abused their mother.  Even with that, learning their scores punched me in the gut. 

I reminded them that their trauma does not define them. Trauma can affect yourself-definition either consciously or unconsciously. Trauma hurts, and as hard as it is to grieve, trauma is not who you are. Your ACEs score is not what is wrong with you; rather it reflects what has happened to you. Just as trauma does not define you, your ACEs score does not define you.  What makes the difference is getting help and developing resilience. 

Prevent ACEs

We Can Prevent ACEs – Video by Centers for Disease Control and Prevention (CDC)

Childhood experiences, both positive and negative, have a tremendous impact on future violence victimization and perpetration, and lifelong health and opportunity. As such, adverse childhood experiences (ACEs) are an important public health issue. Learn how everyone can help prevent ACEs by using strategies to create safe, stable, nurturing relationships and environments for all children.

Part of healing from trauma is stating what happened. It is important to share your story in whatever way you are able to, but being able to takes time.

A few days ago in the car, one of my children stated, “Dad committed acts of domestic violence.”

This was the first time either one of them has used the term “domestic violence” in connection with their father. My marriage ended six years ago.

Finally being able to share this information out loud with me meant one step farther away from the trauma and one step closer to healing.

Where do we go from here?

  • There is no time limit on grief.
  • Everyone grieves differently.
  • Don’t let trauma consume you. Don’t live there.
  • No wallowing!
  • Get help!
  • Strive to heal.
  • Obtain and utilize healthy coping skills.
  • Do what makes you feel good in a healthy way.
  • Reduce risk factors.
  • Increase protective factors
  • Get involved in community.
  • Talk to someone.
  • Educate yourself.
  • Find what makes you feel your true self.
  • Most of all – Be gentle to yourself!!!

 

Talking About Mental Illness – Society Needs to do Better

Content Warning: Suicide and suicide thoughts.

Whenever a celebrity or well-known person commits suicide, suicide hotline information is plastered all over social media. 

Feeling depressed? Reach out! Call this number!

Know someone showing these signs? Reach out!

I am not disparaging the need for these types of hotlines.  Many people can find help through them. In 2015, John Draper (PhD, Director, National Suicide Prevention Lifeline Member, SPRC Steering Committee) reported that in the ten years since the Lifeline began, their centers have answered more than five million calls from people in suicidal or emotional crisis.  

National Suicide Prevention Lifeline – 1-800-273-8255 or Chat

En Español – Nacional de Prevención del Suicidio – 1-888-628-9454

For Deaf & Hard of Hearing  1-800-799-4889

The problem is, how many people didn’t or won’t call? How many children and adults don’t call and continued to suffer in silence, because the people they did reach out to dismissed them or they didn’t feel safe enough to reach out at all? How many kept silent, because they didn’t know what to say, didn’t want to burden their families, or because they were raised not to say anything at all?

According to the CDC, in 2016, nearly 45,000 Americans age 10 or older died by suicide. Yes, as young as 10 years old. Suicide is considered the 10th leading cause of death and is one of just three leading causes that are on the rise.  Researchers also found that more than half of people who died by suicide did not have a known diagnosed mental health condition at the time of death.

According to The State of Mental Health in America, 1 in 5 Adults have a mental health condition. That’s over 40 million Americans; more than the populations of New York and Florida combined. Youth mental health is worsening. Rates of youth with severe depression increased from 5.9% in 2012 to 8.2% in 2015. Even with severe depression, 76% of youth are left with no or insufficient treatment.

From the Anxiety and Depression Association of America, ADAA:

“Anxiety and depression are treatable, but 80 percent of kids with a diagnosable anxiety disorder and 60 percent of kids with diagnosable depression are not getting treatment, according to the 2015 Child Mind Institute Children’s Mental Health Report.”

“Anxiety disorders affect one in eight children. Research shows that untreated children with anxiety disorders are at higher risk to perform poorly in school, miss out on important social experiences, and engage in substance abuse.”

In Spokane County, Washington State, the youth suicide rate more than doubled from 2013 to 2016. It went from 4.3 per 100,000 people 24 and younger to 10.7, Washington State Department of Health data show.  It was reported that nearly 20 percent of Spokane County’s eighth, 10th or 12th graders have seriously considered suicide, according to the Spokane Regional Health District. In 2016, the last year data was publicly available, 15 percent reported that they made a plan to do so. Chris Moore, a student services coordinator with Spokane Public Schools, says suicide attempts are spiking as well, even among kids in elementary school. “We’ve seen a drastic increase with the number of attempts,” Moore says. “It’s a public health crisis. It really is.

For more information – As youth suicide rates surge in Spokane, school officials search for answers

My family has a long history with mental illness on both sides. Then there is my ex-husband’s family.  Various forms of anxiety and depression, PTSD, Bipolar, alcoholism (which is considered a mental illness according to the AMA and the APA – it’s all there based on information spanning five generations.  

For more information – Anxiety and Depression Association of America – Facts & Statistics

My sister-in-law, who I will never have the opportunity to meet, violently committed suicide with a gun when she was 21 years old, three weeks after her son was born.  He will never know his mother.  He is now older than she was when she ended her life. His father raised him on his own. 

My brother-in-law has struggled with depression all his life and has been slowly killing himself with alcohol and drugs. He is in his fifties and he doesn’t expect to outlive his parents. He can’t hold on to a regular job and lives most of the time with his parents and some of the time with his girlfriend. 

My ex-husband has also struggled with depression all his life, but has refused treatment.  His untreated mental illness and his untreated personality disorder ripped our family apart, twice.  He ran from life instead of facing his problems.  He couldn’t deal with his demons, so he pushed his family away and went into isolation with his seven guns and his paranoid ideas.

My ex-husband came from a family who doesn’t talk.  My ex was raised to believe that it was a sign of weakness to talk about your emotions and to ask for help.  Instead, he buried his demons, walled himself up, and went emotionally flat lined to the outside world. The reality is that he can’t handle his emotions, he fears them.  He is emotionally stunted, a 45 year old man emotionally stuck somewhere between a 12 year old boy and a 17 year old teenager.  Our children are actually more emotionally mature than he is.  My sister-in-law killed herself when my ex was only 17 years old and that is where he stopped growing emotionally as a person.     

My son, who is now 15 years old, was diagnosed with depression and anxiety when he was six years old.  He was diagnosed with Autism a year later.  Autism is a developmental disorder, not a mental illness.  My son was on suicide watch twice when he was 11 years old due to his father’s behavior.  My ex had fallen into a major depressive episode, the worst I had seen him be in. He refused to get help.  He neglected and then abandoned his children resulting in my son developing PTSD.  My son was never suicidal, but he had given up hope in life. He saw no point in life any more.  My son still struggles with depression.  He is on medication and goes to weekly counseling sessions. 

My daughter was diagnosed with Bipolar when she was only eight years old.  She has been on medication ever since. She was diagnosed with Autism two years later at the age of 10.  She is now 17 years old.  She was hospitalized when she was 15 years old due to going into psychosis.  She had been essentially stuck in a depressive state for some time and then had a breakthrough manic state.  The combination sent her into psychosis.  The voices told her she had to hurt herself with a knife and then the voices told her to use fire.  She never did and insisted that she could keep fighting the voices, but we managed to convince her to go to the hospital where she stayed for a week in the youth psychiatric ward.  Three months later a space opened up at a long-term treatment facility for youth.  She went into long-term care as an outpatient for three months.  Her medications were straightened out and a new treatment plan was developed for her to be used by her counselor, occupational therapist, and her speech therapist.

Then there is me.  I was diagnosed with Autism after my children were at the age of 36. 

Depression and mainly anxiety have been a part of my life for as long as I remember, but no one talked about it.  I didn’t have the words I needed to use growing up to describe why I felt the way I did.  I was told to lighten up, to stop taking things so seriously.  I was yelled at if I cried.  I was conditioned to not show emotions or to ask for help.  I was also conditioned that my needs didn’t matter.  I was on my own and told to take care of my younger sister who was only two years younger than me.  Alone, that was how I felt for so damn long.  No one listened when I tried to reach out, so I stopped reaching out.  I withdrew into myself, which only isolated me more, because my family either didn’t know what to do with me or took it personally that I had withdrawn, so I was ignored.  I was an undiagnosed autistic child with undiagnosed mental health issues. 

I grew up in a toxic home, but I didn’t realize it.  All I knew was something was off, but I never could figure it out.  I was told I was loved, but I felt so alone and I was scared.  I felt silenced.  What I wanted never seemed to matter.  I was conditioned to comply.  I had no idea how to say “no” or how to advocate for myself.  I was to comply with the wishes of others and rules were rules.

I didn’t know anything about emotional abuse until I was required to take a class for my professional certification as a teacher.  Even then, my mind just couldn’t accept that I had come from an abusive home life.  No, it couldn’t be.  There were other reasons for the behavior, always an excuse, excuses I had heard as a child growing up, excuses I was taught to just accept without question.     

By the time I took this class, I was already married and a parent.  I also hadn’t realized that I had married into an emotionally abusive marriage.  I married what I knew.

For more information – Invisible Scars – A Tale of Emotional Abuse

About 15 years ago, I went through a horrible medical trauma that was made worse by my family’s behavior.  More information can be found here – The Volcano is Awake. There was a time that I wanted to die so the pain would end, but I was never suicidal. I reached out for help so many times, but I was told get over it, bury it, move on.  I would reach out and get a cold shoulder or a back turned to me.  I had to get myself through that dark time of my life on my own and I would never wish that torture on anyone.  What got me through was that I couldn’t leave my children without a mother.  They were only a baby and a toddler at the time and something inside me kept saying that there was no one else to take care of them.  It was my responsibility as a mother that pulled me out and in the process “mama bear” emerged.  I had reached my breaking point, but never fully broke.   I became stronger, but in the process of working my way out of the darkness, I learned I had developed Complex – PTSD.  

Reach outWhen my marriage ended, I once again reached out for help, but was met with the same cold shoulders and told to move on, get over it, stuff it away. As with my medical trauma, I was not allowed to grieve in the way and for the length that I needed to.  I had become an inconvenience, a burden, again.  Once again I found myself alone with two children, teenagers now, and I had to get through the emotional pain of having my family ripped apart, but this time I was going to do things on my terms.  By this time I had learned about self-advocacy and self-determination.  I drew the line and held those boundaries. 

I reached out to others outside my family.  It took time, but I eventually developed a support network that is primarily online.  I am in a better place now, but my children and I are still grieving.  We are getting there, though.  We are much better than where we were a few years ago, but the depression is still there.  It has never fully gone away and I don’t know if it ever will. 

I have tried to create an environment where my children can feel safe talking about how they feel. I want them to feel that there is someone who will listen to them, who feels their voice is important, and who will never give them a cold shoulder and tell them to get over it and move on.  I remind them often that they each have a whole care team rooting for them.  I want them to know they are not alone.   

There is still too much stigma around mental illness. In 9 Ways to Fight Mental Health Stigma, Laura Greenstein states, “Stigma causes people to feel ashamed for something that is out of their control. Worst of all, stigma prevents people from seeking the help they need. For a group of people who already carry such a heavy burden, stigma is an unacceptable addition to their pain. And while stigma has reduced in recent years, the pace of progress has not been quick enough.” 

As a society, we need to do better.  We can’t just post about a suicide or crisis hotlines only during a time when a celebrity commits suicide.  We can’t just think posting these hotline numbers are enough. 

What is mental health stigma?

Mental health stigma can be divided into two distinct types:

  • social stigma is characterized by prejudicial attitudes and discriminating behavior directed towards individuals with mental health problems as a result of the psychiatric label they have been given.
  • perceived stigma or self-stigma is the internalizing by the mental health sufferer of their perceptions of discrimination and perceived stigma can significantly affect feelings of shame and lead to poorer treatment outcomes.

How can we eliminate stigma?

People tend to hold negative beliefs about mental health problems regardless of their age, regardless of what knowledge they have of mental health problems, and regardless of whether they know someone who has a mental health problem.

 “The fact that such negative attitudes appear to be so entrenched suggests that campaigns to change these beliefs will have to be multifaceted, will have to do more than just impart knowledge about mental health problems, and will need to challenge existing negative stereotypes especially as they are portrayed in the general media.” – Graham C.L. Davey, Ph.D

According to National Alliance on Mental Illness (NAMI), stigma harms the 1 in 5 Americans affected by mental health conditions. It shames them into silence and prevents them from seeking help. People need to feel safe talking about mental illness, so here I am talking about mental illness in a public forum.  I do not feel shame.  I do not feel embarrassed. I am not a burden. I refuse to be silenced.  I want people to know that they are not alone. End the stigma!!

Educate Yourself and Others – Learn More

“Everyone knows a little about mental health issues but knowing the facts can help you educate others and reject stigmatizing stereotypes. They are not the result of personal weakness, lack of character or poor upbringing. Understanding mental health isn’t only about being able to identify symptoms and having a name for conditions, but dispelling false ideas about mental health conditions as well.” – NAMI

Ableism in Society – Autism and Mental Illness

Last week my, children and I attended a traumatic brain injury symposium.  I attended for work purposes, but it ended up resulting in so much more.  If you have read my previous blogs, you would know that both my children and well as myself are autistic.  My daughter also has bipolar, more specifically, Juvenile or Early-onset Bipolar Disorder.  She was officially diagnosed when she was eight years old, two years before her Autism was officially diagnosed.  In hindsight, her autism was obvious from the very beginning, she was even tested twice for Autism as a toddler, but her bipolar symptoms seem to over shadow her autistic traits.  Once she started medications to treat Bipolar, her autistic traits became more apparent.  This eventually led to her receiving an official diagnosis for Autism.

My daughter’s autism diagnosis changed after the DSM-V came out in 2013.  She originally was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).  After a re-evaluation, her diagnosis became Autism Level 2 with accompanying language impairment.  The changes in the DSM-V allowed my daughter to get a much more precise diagnosis allowing her care team to develop a more appropriate care plan. 

My daughter is now 17 years old.  She has attended two Autistics Present Symposiums, and now a traumatic brain injury (TBI) symposium.  My daughter does not have a traumatic brain injury, but she discovered that she felt more at home with the people who attended the TBI symposium than she did at the Autistics Present Symposiums.

When I asked her why, she had a very eye opening answer.  What she discovered at the TBI symposium is the people there carried a lot of anger with them.  They are angry about their situation, they are angry about how other people treat them, and some of the people also spoke about their fear of their condition, their temper, and their struggle to adjust and conform to societal expectations.  The TBI symposium also addressed ableism My daughter told me that she encounters ableism every day.  She doesn’t say anything, because she is using so much energy not to get angry.  She is so worried about losing control.  She is at war with herself all the time trying to keep her from being pulled apart by everything she is experiencing internally and externally.  She has nothing left to self-advocate about the ableism she is encountering. 

My daughter told me that she feels people treat autistic people in a softer, gentler way.  People are more accepting of an autistic person than a person who has bipolar.  There is so much negatively surrounding bipolar. She hears people with bipolar are awful, unkind, and cruel people that hurt other people.  My daughter hears it in the media, in school, and out in the community.  Compounding the problem were the voices she would hear in her head telling her she was bad and even instructing her on how to hurt herself with knives and fire.  Luckily, she has not heard those voices in two years, but she still hears the negativity by real people. 

She feels safer saying she is autistic than telling anyone that she also has bipolar.  It takes a special kind of environment where she feels safe enough to disclose about her bipolar.  She felt more at home with people who have experienced traumatic brain injury, because she understood what they were talking about.  She understood their anger and frustration.  She understood the ableism they face and the impatience of people who do not understand the situation.  I am not saying autistic people don’t face ableism.  They do, a lot.  I think what my daughter was trying to explain was that autistic people might be treated with more understanding, but for a person who has a serious lifelong mental illness, that same understanding is not there.

My daughter’s autism and her bipolar are tightly wound together.  Each impacts the other.  How she experiences the world is a result of how her bipolar and Autism interact.  Society as a whole is telling her that part of her is tolerable and part of her is bad.     

I asked my son, who is 15 years old, what he sees when it comes to the difference between how autistic people are treated versus how people with mental illness are treated.  He told me that he thinks autistic people are treated with more contempt and he gave the examples of ABA, “cure”-based thinking, eugenics versus super human perceptions/intelligence like the new Sherlock Holmes. He then said people with mental illness are treated with more fear.  He feels people fear those who have mental illness. 

According to NAMI:

  • Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year.
  • Approximately 1 in 25 adults in the U.S.—9.8 million, or 4.0%—experiences a serious mental illness in a given year that substantially interferes with or limits one or more major life activities.
  • Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.
  • 1% of adults in the U.S. live with schizophrenia.
  • 6% of adults in the U.S. live with bipolar disorder.
  • 9% of adults in the U.S.—16 million—had at least one major depressive episode in the past year.6
  • 1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
  • Among the 20.2 million adults in the U.S. who experienced a substance use disorder, 50.5%—10.2 million adults—had a co-occurring mental illness.

“NAMI condemns all acts of stigma and discrimination directed against people living with mental illness, whether by intent, ignorance, or insensitivity. Epithets, nicknames, jokes, advertisements, and slurs that refer to individuals with mental illness in a stigmatizing way are cruel. NAMI considers acts of stigma to be discrimination. Stigma reflects prejudice, dehumanizes people with mental illness, trivializes their legitimate concerns, and is a significant barrier to effective delivery of mental health services. Because of stigma, individuals and families are often afraid to seek help; health care providers are often poorly-trained to refer people to mental health professionals and/or mental health practitioners, and services are too often inadequately funded.” (Stigma And Discrimination)

Ableism is considered the intentional or unintentional discrimination or oppression of individuals with disabilities.  Ableism falls right in with racism, sexism, ageism, and classism.  People can be ableist without even realizing it. Ableism can exist in many forms.  Here are some examples:

6 Forms of Ableism We Need to Retire Immediately

Ableism/Language

What is Ableism and how is it harmful?

If you have a child who has been labeled a behavior student in school, ask yourself, “Is ableism in the classroom a possible trigger for your child’s behavior?”

If you are experiencing anger in the work place, ask yourself, “Are you experiencing ableism where you work?”

My daughter wanted to add a quote to the end of the blog:

“Spread the facts about mental illness, not the bias!”