Mental Health and Hormones

This might be an odd topic to discuss, but it’s actually very important in terms of adolescent mental health particularly if there is a biologically-based brain disorder on the table.

What happens when puberty strikes?

Let me get this off my chest.  I hate the word ‘puberty’.  I don’t know why.  It’s a weird word, isn’t it? I don’t even like to say it aloud.  “Puuuuuuuuuberty.”  No.  Just…no.

What else can I call it? Game Day? The Dawn of a New Age? Rites of Passage? Pledge Week? These all sound like terrible movies, cults, or something that happens to you at a Greek Week event.  But, isn’t that what puberty feels like? I digress…

Everyone warned me that puberty would be an über nightmare for Grace as opposed to the standard nightmare that the neurotypical folks experience because the sudden surge in hormones might possibly increase the intensity of her diagnosis–schizophrenia spectrum disorder.  I winced.  It is a valid concern because onset of puberty is often the time when schizophrenia and bipolar spectrum disorders emerge.  If you have a child who has a childhood-onset diagnosis, then what might puberty change or exacerbate?

So, how has it been?

Well, the first thing to note here is that Grace has been taking Abilify since she was 11 years-old, and Abilify affected her sexual development.  She didn’t experience any signs of puberty until she was well into her 15th year.  That’s late.  It was concerning.  We were almost referred to an endocrinologist.

The second thing to note is that her symptoms were in no way exacerbated by her diagnosis.  She was a very typical teenager if ‘typical’ is a thing.  In other words, her behavior and thoughts were well within the bell curve for what I would define as normative although she has favored emo-angsty self-expression for about a year.  It’s like living with a character from a knock-off John Hughes movie.  The month prior to menarche (another word that should never be used), however, she became an asshole, and no one knew why.

Also, she wanted to snort and mainline sugar.  I had to practically build a wall between her and the kitchen just to keep her away from anything potentially sugary–even granulated sugar! She hated everything as well.  She was rude.  She wanted to be left alone.  Everything was bad.  And, she cried all the time.  She is my third daughter.  I’ve seen all this before but not quite at this level.  A friend commented, “Wow, she just hates everything.”

Well, when her first period arrived, it all crystallized, and her mood cleared up.  It’s damn hard being a girl.

We did not, however, have any psychotic symptoms.  We did not have a surge in mania.  It was fairly typical.  Everyone in the house gets a bit moody and upset as their hormones ebb and flow.  Doireann cries.  Eadaoin gets punchy.  Grace hates everyone and everything.  I feel irritable.  It is life.  You learn to go with the flow (sorry about the pun…).

The good news? There was no apocalypse, and that means a lot because more than a few people prognosticated the end of the world for Grace when Shark Week hit.

So, should you be in a similar situation, wondering how your child will do when the surge of hormones bathes their brain in all the colors of the moody, developmental rainbow, have hope.  Sometimes things go smoothly and everything works out.

Just as you hoped it would.

 

 

Making David Sedaris Proud

It’s been a year since the girls and I have lived together sans their father here.  He moved out a year ago.  Last year was a year in transition to say the least, but everyone is emerging in very good shape.  In better shape.

Personalities are revealing themselves in ways that may not have been permitted before.  As a parent, it’s reassuring to see.  As another human being who lives here, in the fray with a 13 year-old, an almost 16 year-old, and an almost 18 year-old, I find it extremely entertaining (yeah, Grace is almost 16!).

A few weeks ago, one of our family pets, Q the parakeet, died suddenly as in he literally keeled over.  Q was a very interactive bird.  He was very loud and screechy (a trait Doireann in particular disliked), but it’s because he loved attention.  Eadaoin loved him.  She had picked him out to be her bird.

On the night he died, I recall talking to him before I showered.  As soon as I opened the bathroom door wearing nothing but a towel, Milly approached me and whispered, “Mom, look at Q.”  I immediately felt dread.  I approached his cage and looked for Q.  He was lying on the bottom of the cage in a contorted pose, his wing entangled in the cage bars.

“Oh my god, what happened?! Is he alive? I just saw him a few minutes ago!” I shouted.

I reached into his cage to try to remove him, and I found that his feet had grasped onto the bottom of the cage which prevented me from removing him.  I had to undo his tiny grip, and it wasn’t easy.  Each little birdy toe was interlaced within the slats of the bottom of the cage.   I kept thinking, “How am I going to get him out of this cage without breaking his feet?”

Milly and Grace were hovering around me and the cage at this point.

“Is he alive? Is he alive? He can’t be dead! Eadaoin will be so upset.  Oh no…” Milly repeated.

I tried to reassure them, but I was fairly certain Q had died.  It looked like he had suffered a seizure based upon the final pose of his body.  I was having a helluva time removing him from his cage, and I noticed that my towel was slipping.

“Maybe he’s alive! Maybe he’s alive!” Milly suggested hopefully.

“Honey, I think he has probably died,” I finally said with both my hands still in the cage.

Grace was wringing her hands and trying not to cry.  My towel was going to fall off.

“What if he’s really alive?” Milly asked.

“He’s not alive,” Grace answered rather emphatically.

“He could be!” she countered.

“Look at him! He’s lifeless.  He’s dead, Milly!” Grace shouted to match Milly’s energy.

“He could be…you know…in one of those…what are they called?” Milly stammered.

“A coma?!” I answered, shocked, momentarily distracted from trying to get poor Q out of his cage.

“Oh my god, Milly, the bird doesn’t have locked-in syndrome! What in the world…he’s dead!” Grace said very pointedly.

“Well, I can hope, right?” Milly retorted, her fists balled up by her side.

“No, you can’t! You can’t hope for something to be in a coma when it’s died! That’s ridiculous…”

Interrupting the banter, I all but yelled out, “Hey! Eadaoin’s bird has died here! Stop it! And my towel is going to fall off.  Help me!”

That’s the moment I paused everything in my mind.  I observed the scenario.  Both my hands are in a bird cage while I stand almost naked, dripping wet, handling a dead parakeet while my daughters are literally yelling at each other over the possibility of our obviously dead bird having locked-in syndrome.  It was absurd.

I was eventually able to remove Q from his cage.  He had, in fact, died.  There was no doubt about it.  Everyone held him, and Milly spoke words of kindness to him as she held him: “You were always a loud bird, but we loved you.”

Eadaoin was predictably heartbroken.  She told me that she didn’t want to even see him, but, upon my suggestion that it would help her mourn him, she held him anyway.  Then, in a scene of sweet sadness, she pet his face and held him next to her heart.

Milly found a box, gently placed Q in it, and announced that she wanted to bury him in our backyard.  She also announced that she wanted to do it alone.  Eadaoin was too sad to be at his funeral, and I told Milly that I didn’t mind if she did it alone.  I could hear her singing a song to him from the kitchen.  I half expected to hear “Taps”.  She is a very serious girl.

I began to feel melancholy in observing everyone’s grief for their deceased pet.  I was sad, too, that he had died.  Milly came inside after burying Q, washed her hands, and leaned against the counter.  She looked thoughtful.

“Are you okay?” I asked.

She nodded and bit her lip.

I felt myself become anxious.  Maybe I should not have honored her request.  Did I make a bad decision? I don’t always know the right things to do.  Parenting is damn hard.

“Mom…” Milly asked tentatively.

“Yes?” I replied hesitantly afraid of what she was going to ask me.

“You’re sure that he’s dead, right?” Milly asked.

Suddenly, a loud shout from the living room boomed throughout the house.

“Oh my god! He doesn’t have locked-in syndrome! He’s dead!!!!!”

Breathing out a sigh of relief, I quietly laughed.  Yeah, everyone is okay.  Everything is fine.

 

 

Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.

The Imaginary Audience

Happy 2016, one and all! I feel like asking, “How are you?” And, I hope that some of you tell me!

I have been adjusting to life as a single parent, and I have to admit that it is exhausting not to mention the Groundhog Day Effect.  I clean one room, leave it, return to it, and find that it looks just like it did before I cleaned it–all within the space of ten minutes.  So, my days are starting to feel just like Bill Murray’s in the film “Groundhog Day”.  Interminable sameness.  “Didn’t I just pick up this exact piece of paper from this exact spot yesterday?” No.  Am I losing my grasp on reality? No.  Have I bridged the space/time continuum? No.

What is going on then?

The answer? I have three daughters at home, and they don’t observe a lot outside of K-Pop, manga, their insatiable desire for savory snacks, and their obsessions du jour.  Okay, okay, there are other things going on as well, but you get the picture.  I will admit that relaxing into it seems to be the way to go.  I’m not pushing the river, so to speak, when it comes to the culture at home.  With the atmospheric oppression lifted, I have wanted to see how the girls would expand in their own right.  What might evolve in terms of family culture in our home? Doireann is living on campus now so the home dynamic has changed.  Everyone living at home carries a DSM diagnosis.  We have three biologically-based brain disorders at play.  What might emerge?

The first thing that happened was a kind of collective deep breath followed by the predictable release of emotions.  Everyone had been walking on eggshells around my ex-husband (their father).  No one knew any peace in the home due to fear.  When safety and predictability were finally established, everyone freaked out.  We had crying jags, externalized emotional expressions of fear, anger, confusion, and expression for the sake of expression.  Just because they could.  There was an outpouring of verbal expression that sounded a lot like hatred: “I hate him!”  It’s rooted in feelings of betrayal, confusion, and profound emotional pain.  There was a month, after he moved out, in which the girls refused to see him.  To his credit, he did not push them.  Doireann, however, has cut him out of her life.  She has her reasons, and they are valid.  This is her journey now.  She is almost 19 (can you believe that?).

Grace began high school, and Milly began middle school so the school year, in a word, has sucked.  They are, however, developing resiliency, and that is what I have wanted for them.  It is difficult as a parent to watch our kids swim through the shark tanks of both middle and high school.  We remember what it was like.  I’ve only met one person in my entire life who liked high school.  No one looks back on middle school fondly.  It seems that everyone turns feral during that time in adolescence.  Instinctively, I would spare them that particular suffering, but, at the same time, how will they find out what they’re made of? To quote T.S. Eliot, “If you aren’t in over your head, how do you know how tall you are?” For those of us with children with mental health issues, we walk a very fine line when it comes to helping our children develop resiliency because we are never sure of what their tipping point is.  On a good day, they can handle a lot.  On a bad day, they can’t.  And, there is no predicting in the morning if a day will be good or bad in terms of their ability to cope.

Yesterday, for example, Milly seemed okay.  I have to drive fifteen miles to her school as she is open-enrolled in another district.  We leave early so that we can hold to our morning tradition of stopping at the Caribou Coffee across the street from the school.  I get coffee, and she used her allowance to buy a drink of her choice.  Yesterday, she chose hot chocolate.

It is worth noting for the sake of this story that when Milly was younger she would never speak in public.  She would hold onto my legs and hide behind me.  Sometimes, when I would walk, she would slip down my legs, and it would look like I was dragging her behind me.  Oh, the looks I got! She was terrified.  She was almost agoraphobic.  She is on the autism spectrum (what the DSM-IV labeled as Asperger’s Syndrome), and she has an anxiety disorder as well as a depressive disorder.  Co-morbid to this are sensory processing issues.  Milly has always been the way she is.  From Day 1.  And, she has been receiving countless kinds of interventions since she was a toddler to bring her to a place of functionality.

Yesterday, however, she marched up to the counter, ordered her drink, paid for it, and sat down at our chosen table–just like a neurotypical kid.  I almost take it for granted now.  She was talking to me about a documentary that she had watched; she is really into documentaries: “Mom, some of these documentaries are hard to watch, but I think that it is our responsibility as people to know the truth about what is happening in the world.  It is important, and part of that is feeling uncomfortable.  I feel a responsibility to know so that I can help.”  My 12 year-old said this to me! I was amazed.  As she was sharing this, she knocked her drink over, and it splashed all over her pants.

Time slowed.  I saw her face.  Her eyes widened.  She was frozen.  Tears started.  She couldn’t move or respond.  Her diagnoses came to the forefront.  I wasn’t dealing with Milly anymore.  Hello, Anxiety.  Hello, Depression.  Hello, Autism.  She was enveloped in them.  And, this was the moment to talk to her rather than try to save her.  If I could reach her, then I could get some neurons to fire.  “Hey, hey, it’s okay.  It’s just a drink.  I need you to stand up and go ask for a rag.  This isn’t a big deal.  Can you move?”  She couldn’t.  She was using all her emotional energy to hold it together.  “Can we leave? Can we leave? Can we leave? I wanna go home.  I wanna go home.”

Suddenly, a woman appeared with napkins.  “I saw what happened.  You clearly need help.”  She looked at Milly with kindness, and then she looked at me judgmentally as if I wasn’t helping my daughter.  I wasn’t helping her in a way that she would help.  I am accustomed to this.  I have developed some shame resiliency.  I thanked her and got up to ask for help.  Another person had already intervened on our behalf and a barista was on her way over.  Milly was able to stand up, but she was trembling.  Her bottom lip was quivering.  She ran to the door and stood there.  She was ready to bolt.  The barista cleaned up the table and chair, and I sat down.  I motioned for Milly to return, but she shook her head at me.  I mouthed, “Come here please,” and she slowly returned.  Her pants were indeed saturated with hot chocolate.  She could not go to school like that.

“Everyone is staring at me!” she said quietly starting to cry.

“Here is a secret,” I said.  “No one really cares what you are doing.  If you take care of what you are doing and carry on as if nothing worth looking at happened, then people won’t care either.  But, when you sit there in your chair frozen and rigid, refuse to help yourself, and run across the store to stand by the door, then people will stare.  Those are unusual behaviors, and people stare at unusual behaviors.”  She was able to hear that.  She made her “thinking face”.

“Oh,” she said, “so if I act like nothing happened even though it’s so hard, then people won’t really stare that much?”  she asked.

“For the most part, yes.” I answered.

“But, there was a group of kids staring at me,” she said pointing directly at them.

And, here we landed on the Imaginary Audience.  There may have been a group of kids staring at her; in fact, I don’t doubt it.  But, why is this form of social anxiety so heightened in adolescence and even more so with young people on the high-functioning end of the autism spectrum? It is due to the developmental phase characterized by the egocentric state known as the imaginary audience:

“David Elkind coined the term “imaginary audience” in 1967. The basic premise of the topic is that people who are experiencing it feel as though their behavior or actions are the main focus of other people’s attention. It is defined as how willing a child is to reveal alternative forms of themselves. The imaginary audience is a psychological concept common to the adolescent stage of human development. It refers to the belief that a person is under constant, close observation by peers, family, and strangers. This imaginary audience is proposed to account for a variety of adolescent behaviors and experiences, such as heightened self-consciousness, distortions of others’ views of the self, and a tendency toward conformity and faddisms. This act stems from the concept of ego-centrism in adolescents.[1]

Elkind studied the effects of imaginary audience and measured it using the Imaginary Audience Scale (IAS). The results of his research showed that boys were more willing than girls to express different sides of themselves to an audience. This apprehension from girls has given rise to further research on the value of privacy to girls. Imaginary audience influences behavior later in life in regards to risky behaviors and decision-making techniques. A possibility is that imaginary audience is correlated with a fear of evaluation or self-representation effects on self-esteem.[1]  

Imaginary audience effects are not a neurological disorder, but more a personality or developmental stage of life. It is not aroused by a life event; rather it is a part of the developmental process throughout adolescence. It is a natural part of the process of developing a healthy understanding of one’s relationship with the world. Most people will eventually gain a more realistic perspective on the roles they play in their peer groups as they mature. This natural developmental process can lead to high paranoia about whether the adolescence is being watched, if they are doing a task right and if people are judging them. Imaginary audience will likely cease before adolescence ends, as it is a huge part of personality development. Imaginary audience can be as simple as having to change multiple times in the morning because the adolescent still feels unsatisfactory about arriving at a destination about his/her appearance even though he/she will appear the same as everyone else. The number of adolescents who experience an imaginary audience effect cannot be described with any sort of statistics because an imaginary audience is experienced in all adolescents.” (online source)

The imaginary audience phenomenon is one reason why adolescence is so damn awful.  We feel perpetually observed and scrutinized.  For the person with autism it is even worse because of the clash between a deficiency in theory of mind and this:

“According to Jean Piaget, a Swiss developmental psychologist known for his epistemological studies with children, every child experiences imaginary audience during the preoperational stage of development. He also stated that children will outgrow this stage by age 7, but as we know now this stage lasts much longer than that. Piaget also said imaginary audience happens because young children believe others see what they see, know what they know, hear what they hear, and feel what they feel.”

Piaget’s assessment that young children believe that others see, know, hear, and feel as they do is, in fact, the definition of a theory of mind deficiency.  This is the hallmark struggle of Asperger’s Syndrome.  If we were to recall then our own middle school experiences, we would see that one of our greatest social anxieties revolved around fear of being discovered.  “Everyone sees this.  Everyone notices this one thing that I hate about myself.  I look terrible today, and everyone sees.”  In this, we see the imaginary audience in addition to the belief that “everyone” is aware of what we are trying to mask.  Keeping in mind, every single person in our peer group is experiencing the same developmental phenomenon, it is no wonder that adolescence is a horrible experience.  It’s like squeezing hordes of porcupines into a shoebox and asking them not to prick each other.

What is the outcome?

 The extremes to which adolescents experience an imaginary audience, however, varies from child to child. Some children are considered to be more “egocentric” than others and experience more of an extreme imaginary audience or have more of an elaborate personal fable.[2] Therefore, children then subconsciously put more value on the idea that everyone cares about what they are doing at all times. This is very common in adolescents during this level of development as the child is going through Erik Erikson’s identity vs. identity confusion.[3][4]

The child is struggling to figure out their identity and formulating congruent values, beliefs, morals, political views, and religious views. So, on top of experiencing an identity moratorium in which they are exploring different identities, children feel they are constantly being watched or evaluated by those around them. This leads to intense pressure being placed on the child and may also influence later self-esteem.[2][5][3][4]

Comedian and former Saturday Night Live writer John Mulaney jokes about this here:

13-year-olds are the meanest people in the world. They terrify me to this day. If I’m on the street on like a Friday at 3 PM and I see a group of 8th graders on one side of the street, I will cross to the other side of the street. Because 8th graders will make fun of you, but in an accurate way.  They will get to the thing that you don’t like about you. They don’t even need to look at you for long, they’ll just be like, “Ha ha ha ha ha! Ha ha ha ha ha! Hey, look at that high-waisted man! He got feminine hips!”  And I’m like,  “No!! That’s the thing I’m sensitive about!!!!”

Doesn’t this feel absolutely true?! And, it feels true because of our past developmental experience with the imaginary audience and our own theory of mind.
The point here is that our experience in adolescence of our own imaginary audience does, in fact, affect our self-esteem later on in life.  So, those odd teenaged behaviors and rituals that we as parents and caregivers observe in our kids do matter.  We are observing an identity being birthed, and it is vital that we assist in that with empathy, kindness, and nurturing.
You might not value or even like how your child is attempting to mitigate the intense pressure of the imaginary audience, but it is worth asking how you can be a support and resource while they individuate and, ultimately, differentiate.  My goal as a parent is that their self-esteem is intact, strong, and well-founded along with their sense of identity so that they don’t fear 13 year-olds walking down a street one day when they’re 30 years-old.
Is this possible? Even with our children with special needs? I believe so.  It is hard.  As hard as you expect it to be, you find yourself wishing that it were that easy.  For me, however, I have found that no moment has been wasted in my efforts to prepare my kids for the life they have today or the life awaiting them–regardless of what that life will look like or what their present limitations are today.

 

 

Reframing Anxiety

As you know, Milly moved to a new school district this year.  She is now in the fifth grade.  That feels weird to say.  Grace was in the fifth grade at the onset of her disease, and she’s starting high school in the fall! Can someone please groan in disbelief with me?!

This new school district is one of the wealthiest in our state, and I knew that Milly would be rubbing shoulders with privilege.  I grew up in the same situation.  My mother remarried when I was in the fifth grade, and our new blended family moved to a premier gated community on one of the nation’s newest and most exclusive 18-hole golf courses complete with country club and nouveau riche attitude.  I felt sorely out of place.  Parents were dropping their kids off at school in Jaguars and Porsches.  At Milly’s school, parents drop their kids off in Ferraris and Humvees.  There is only one non-white student in the entirety of the school.  We live near the city,  In our district schools, the student population is extremely diverse.  Suffice it to say, Milly was shocked but not impressed.

Why did I enroll her in this district? Special education resources, baby! Milly is receiving amazing accommodations through a fantastic IEP in this district.  The teaching staff is excellent, and the school principal along with her homeroom teacher should be bronzed.  It was the right decision through and through which is good because I drive, drive, drive all the time now.  Perhaps this is why I don’t blog here as often.  I’m driving.

What is even more interesting are the parents.  I have seen true helicopter parenting in action in this school in ways I have only read about in the New York Times.  They have the resources and the perceived influence to go in and make life hell for everyone.  “I’ve got a Hummer! I’ll drive it through this school if you don’t help my child’s cursive writing look like calligraphy!”

I kid.  Sort of.  The amount of wealth and privilege in this particular school is staggering, and it has led parents to believe that they can provide anything for their kids.  We want to believe this as parents.  If you have vast financial resources, it’s an even greater temptation to believe that you are the source of all provision.  You are not.  Let me explain.

I have met two mothers of two girls in Milly’s homeroom.  One of the mothers called me at the beginning of the school year and began to very subtly pump me for information.  Milly was new.  She needed to get the goods on our family.  She was skilled. I’ll give her that, but I’m from Texas.  Southern women are in a class all by themselves when it comes to gossip, getting information, and pretending to be friendly with a darker motive.  I have received this treatment many times from women ten times more adept than her.  So, I played along.  I may have misbehaved a little by giving her leading information that may or may not have been true.  I plead the Fifth on that one.  ::she grins::

She made a point to say to me:

“There may be a child in the class with Asperger’s.  Just so you know.”

I pointedly said, “That would be my child.  Milly is on the autism spectrum.”

You could have heard a pin drop.  ::she laughs maniacally but only on the inside::

This woman makes a point to talk to me at all school events now.  Guilt.  She mentioned to me recently that she and her husband bought a dog for their daughter in hopes that it would prevent her daughter from needing therapy.  Note that.

The other mother I mentioned controls the schedule of her daughter to such a degree that she can’t even have playdates with the same friend two weekends in a row.  This child has anxiety, but she does not see a therapist.  This mother has chosen control as a means to control her daughter’s anxiety.  One kid gets a dog.  The other gets a tiger mom.  Neither gets help outside of their parents.  And both parents along with all the others I’ve met at this school seems to believe one thing: My kid should not be anxious.

Let’s reframe this.

Travel back in time please to the moment before your first kiss.  Were you sweating? Did you feel sick to your stomach? Did you ponder whether it was really worth it? I was.  Jared.  That’s who kissed me first.  He was a senior.  I was a freshman, and I remembered seeing the look on his face.  The Look.  Intention.  Ohmigod, he’s going to do it.  And, it wasn’t like any John Hughes movie I had ever watched! Cue the cool music! Cue my hair looking awesome! What? I still had braces? Why does he look so intense? Why do I want to turn tail and run to my room and never come out? Do I really have to do this? Oh gawd, what if he, you know…er…tries to…GASP…FRENCH kiss me?!

That’s anxiety, and anxiety is part of growing and learning new skills.  Kissing is a skill after all.  We weren’t born knowing how to kiss.  And any girl will tell you that the bad boys kiss well.  Why? They had lots and lots of practice, and they weren’t anxious.  Why aren’t they anxious? Because they had mastered kissing girls.  They are “bad” because they had “leveled up” to other activities.  Activities that made the rest of us really anxious.

So, think about the first time you hit all those bases? Were you calm, cool, and collected? I doubt it.  No skills.  Fumbling around is more like it.  Now, think about The First Time.  I’m thinking that both genders were mind-numbingly anxious, but the desire to do it was greater than the anxiety.  That’s biology right there.  Drive mixed with desire.  Lust and maybe love for some people.

Now apply this principle to life.  We will experience anxiety before every jump in skills.  When we lack the skills, we know it.  That adrenaline dump is there to give us an edge.  Our insight into our own lack of skill is supposed to help us.  Adrenaline slows down our perception of time so that we can take in information.  We are designed to learn, change, and evolve.  Anxiety says, “Pay attention.  You don’t know this.  Time to learn it.”  Parents who insist that their children never feel anxious are actually preventing their children from developing distress tolerance.  It isn’t that we are not supposed to feel anxious.  We are.  It is that we are supposed to develop a tolerance for a certain level of anxiety.

Children are always going to feel a certain level of anxiety because they are in a constant state of skills acquisition.  Developing a tolerance for the discomfort that comes along with that internal stress known as anxiety is what is necessary.  Where does one learn this? Well, oftentimes we learn this in a therapist’s office, and this is the biggest misconception about therapy.  Because of the stigma around mental illness, parents feel shame around sending their kid to a therapist preferring to get a dog or control their child’s social groups and schedules.  This will not help a child acquire interpersonal skills, distress tolerance, or self-esteem.

A therapist is a skills teacher.  They teach skills.  They also teach parents how to enable their children to learn while tolerating distress.  What’s more, they teach parents how to increase their own distress tolerance by introducing them to what is normal and healthy.  So many times, parents apply their own experience of childhood to their children’s experiences and prematurely intervene believing that they are preventing their children from having the same terrible childhood experience when, in fact, nothing of the sort was happening for their children.  A therapist would point that out and help a parent gain insight into their own beliefs and feelings about their own childhood experiences.  In this way, a parent would be given an opportunity to heal and grow, and their children would be given an opportunity to individuate from their parents which is vital to proper development.  A therapist would also be able to differentiate between normal anxiety and clinical anxiety, and, therefore, make treatment recommendations.  Clinical anxiety is crippling and must be treated.  No parent should be attempting to treat that in-home alone.  No dog will help that.  No amount of control will change it.

In the end, parents get to be parents, and they learn to allow others into their life experiences.  We need outside resources when it comes to raising our kids.  It is hard sometimes, but, as with any new experience, be it sex or trying a new thing like therapy, we will be anxious.  But, normal anxiety is a sign that we are growing.

So, go with it.  See where it takes you.  See where it takes your kids.

How to Advocate

If you’ve followed our journey here at Empowered Grace for any length of time, then you’ll know we have had our share of struggles within the education system.  Anyone who’s had to fight for an IEP can empathize with this.  This isn’t, however, what I’m talking about.  I’m talking about experience with teaching staff who perhaps should no longer be teaching.  Remember Miss Lydia or perhaps the school principal whose mediation at which I testified? The school principal was ultimately fired as was the nefarious Spanish teacher.  Miss Lydia was moved to another department much like a pedophile priest.

It’s a bit weird to think about, isn’t it? We hope that when we send our kids to school the teachers and staff will be safe people.  We trust that they will be.  When we step back and look at that assumption, we must see the flaw in our belief.  If we break down the staff at a school district into a percentage, then what is the likelihood that 100% of the people working in a school district will be well-adjusted and healthy? When you look at it through that filter, you start to see the problem.  What percentage of the staff might have a personality disorder? What percentage might have health problems that affect their ability to effectively teach? What percentage might struggle with depression or mood disorders? What percentage might be living with or caring for someone who meets these criteria thusly detracting from their overall well-being as individuals?

Or, let’s be honest, what percentage of the staff might just be assholes? I’m not sure when the DSM will consider ‘asshole’ as a psychological pathology worth treating, but I think someone should put it on the table for discussion.

It’s hard to be an effective teacher.  I would not want that job.  These days you aren’t dealing with just the kids.  You’ve got the parents, too, and this makes teaching that much harder particularly if you teach at a private school.  I get it.  Nothing is simple anymore in terms of ‘going to school’.  The Columbine shooting changed everything, and the arrival of the Helicopter Parent perpetuates entitlement and immaturity within student populations almost tying the hands of educators, it seems.

Still, what do you do when there’s a bad apple in the bunch? What happens when the bully isn’t another kid but an authority figure? And, what do you do when said authority figure targets vulnerable youth?

This is our situation at Milly’s new school this year, and the ‘bad apple’ is her case manager who also happens to be one of her math teachers as well as her social skills class teacher.  It’s not a situation I’ve ever come across before.  Usually, a case manager is a social worker working in the special education department.  I have never met a case manager who doubles as a teacher.  It feels like a conflict of interest to me because social workers often act as liaisons between students and teachers.  The social worker is the soft place to land for the student.  Teachers are there to educate and adhere to state requirements.  They are authority figures.  They discipline in the purest sense of the word.  Social workers are the nurturers.

A few red flags cropped up with this teacher/case manager, and I have been documenting her behavior.  Milly came home, sometimes crying, about certain interactions that occurred in her social skills class.  She continued to say that she felt worthless after every social skills class.  A red flag.  I notified the principal and laid before her what I had documented.  Sometimes this is all it takes.  A teacher decides to try a new approach.  They don’t know how it’s going until someone says something.  I’m often the one who says something particularly if children are getting hurt.  The principal responded quickly, spoke to Milly’s case manager, and resolved the situation.  She spoke with me and said that this woman seemed remorseful and had even cried.  The teacher said that she never meant to hurt anyone.  Good, I thought.  All taken care of.

A few weeks later, Milly informed me that nothing had changed.  This woman was still yelling at the class for not holding their paper in math class in a very specific way.  She demanded that the entire class “write neatly”.  She roamed the class looking at every student’s work and even erased papers in their entirety if she found handwriting that didn’t meet her standards–even the papers of special needs students.  This smacked of obsessive behavior which, to me, was another red flag.

Milly then came home sobbing after an incident within her social skills class led by this teacher which was, to say the least, beyond the pale.  I documented everything and contacted the principal yet again.  Once again, the principal acted quickly, but this incident was more serious.  It took longer to resolve, and Milly was becoming more fearful of her case manager/math teacher! This teacher sent me a personal email asking me to contact her directly with concerns.  She did this for two reasons: 1) to appear personable and 2) to avoid future entanglements with the school’s administration namely the principal.

This was yet another red flag.  How do you deal with a person who is subtly manipulative like this? Call their bluff.  This particular teacher is highly anxious.  She cries all the time.  I knew that she was not stable because Milly reported that she would often hijack the social skills class to sit and talk about her own life and problems–to a group of ASD elementary students no less.  Another red flag.  She would often break down during her personal rants in front of these students in her attempts to garner sympathy and hugs from them.

How did I call her bluff? I did, in fact, email her directly about one of my concerns–her insistence that students hold their papers while writing in a very particular way.  In her classes, a student isn’t allowed to hold their paper in a way that suits them.  They must hold down their paper in a way that suits her–even if it hurts the child to hold their hand or arm that way.  I asked her if should would allow, at a minimum, the special needs children in her classes to hold down their papers in a way that suited them so that they could change their focus to the content of what they were writing rather than how they were writing.  She replied that she had never done such a thing to Milly dismissing Milly’s perceptions as ‘internalizing’.  She herself would correct her the next day.

Red flag.  

This situation blew up fast simply by my doing as she asked.  I emailed her a concern, and she personalized it.  She victimized my daughter the next morning by getting her alone for 20 minutes and confronting her about the contents of my email–something my daughter knew nothing about.  Her anger was displaced.  She cross-examined her.  She gaslighted her.  She wept in front of her.  And then she went on to do what no teacher or caregiver should ever do.  She made Milly make a deal with her.  She told her that she was no longer to share anything that bothers her or even happens in her class with other teachers or even her parents.  She was to keep it between the two of them.  “We are going to make that deal, okay?” And she wouldn’t let her go until she promised to make that deal with her.

That isn’t a red flag.  That’s a fire.  That’s a move out of the abuser’s handbook.  Deals? Secret keeping?

I’d like to say that this sort of thing doesn’t happen in schools, but it does.  I’ve run into very suspect behavior in every school in which my children have been enrolled.  It isn’t because educators and staff are innately bad.  It’s simply because human beings are flawed, and human beings populate schools.  One must get used to the idea that every school is a microcosmic representation of what’s “out there”.  There are great people, average people, a few assholes, and even a few predators.

So, what do you do when one of the predators happens to be one of your child’s teachers? Find one of the great people because all schools have great people working there, too.  More than that, there will be more great people working at a school than there will be predatory or abusive people.  If that isn’t the case, then there is something wrong with the school district itself, and my advice is to leave that district as soon as possible.  That’s a systemic problem that one person cannot fix.

In our case, Milly’s new school is full of amazing staff.  Her primary teacher is a gem, and her school principal has award upon award for performing her job.  She is a stellar school principal.  Milly spends at least half an hour a day with the school principal.  They have lunch together.  They check in with each other.  So, when Milly’s primary teacher found her in the hallway crying after she was ambushed by her case manager, this teacher wasted no time.  These women have circled the wagons around Milly.  I was called.  The Director of Special Education was called.

I don’t know what is going to happen, but I have learned a lot after all the issues we’ve had over the years raising children with special needs in the public school system:

  • Establish a line of communication with the administration of your child’s school.  Get to know staff.  Get to know your child’s case manager.  Form a relationship with your child’s teachers.  Let them know that you are there to answer questions should they have any.  Having a relationship with teachers and staff at your child’s school gives your child a sense of empowerment, and it can add support to the people teaching and supporting your child as well.  It also adds accountability to the mix.
  • Listen to your child.  Believe your child.  If your child is continually telling you the same thing about a certain teacher, then pay attention.  If your child tells you that s/he is afraid of a certain teacher, then find out why.  Make simple statements like, “Why are you afraid?” and “Tell me more.  I want to hear your story.”  Don’t tell your child what to feel or ‘should on them’.  Active listening is powerful.  Abuse in schools does happen.  A former teacher at Grace and Milly’s school had been emotionally and physically abusing students for years.  Students had been reporting it to parents through statements like, “I’m afraid of her.  She’s so mean,” but parents often overlook statements like these because they feel that it’s just part of being a kid.  They had to tolerate mean teachers, too, so why shouldn’t their children? Investigate.  There can be a mile of difference between a strict teacher and a truly mean teacher.
  • Document, document, document.  I can’t emphasize this enough.  You can’t approach administration without evidence.  You can’t ask that changes be made in the way of speaking to a teacher, correcting bad behavior, or even investigating questionable behavior without good documentation.  Good documentation means writing down the date of your child’s complaint, the complaint itself, and any other observations your child made.  The more details that you can record the better, and those details are far more powerful than an emotional phone call from a parent.

The best outcome in most cases is that a teacher is made aware of their less than desirable behavior or teaching method, and they correct it.  There are a plethora of reasons why teachers fall back on excessive shaming, yelling, manipulation, ambushing, and even physical abuse.  It’s all wrong, but there are reasons.  The teacher who was abusing students at Grace’s elementary school actually had a long-term back injury, and she was in constant pain.  She was losing her ability to manage her chronic pain, and it was, therefore, coming out sideways.  I’m not justifying her abuse.  I’m merely explaining it.

In the end, you can never forget that you are your child’s best advocate.  You are their voice when they have lost theirs, and you are their intercessor as it were.  You stand in the gap for them when the gap becomes too wide for them to straddle or even leap.  It is not an easy job because it requires vigilance, and you never get a break.  Ever.  As they get older, they learn better self-advocacy skills, but, if they have special needs, they will need you for a lot longer than a neurotypical child.

So, be brave.  Don’t be afraid to speak up.  And, remember what Doireann’s sixth grade teacher told me when I was just learning to advocate for my kids in the public school system:

If you don’t speak up for your child, then who will? You get out there and give ’em hell.  That’s your job.

 

 

As The SPED Turns

Well, I’ve never seen it happen, and I’ve never heard of it happening.  Alas, it seems that it does.  The woman from Eadaoin’s school who phoned me this week regarding Eadaoin’s 504 plan, the new special education person (the SPED person), called me again except that she wasn’t her brazen, stubborn self.

She was different.  She was almost crying.

I don’t know if I shared that this woman hung up on me during our first and only phone call.  She’s new to the department although she isn’t new to special education (SPED).  She had an agenda when the phone call started.  If that’s how a SPED person is going to operate, then I’ll shift from parent to advocate.  I can be cooperative.  I can be very amiable, empathetic, and kind.  Act like an ass who doesn’t care about vulnerable youth? Treat kids like numbers? Indicate that you don’t know IDEA 2004 or the Federal Registry from a hole in the ground? I’ll play hard ball.  This is why she hung up on me.  I didn’t empathize with her constant complaint that she was new.  So? You haven’t done your job.  You aren’t listening.  You don’t understand the difference between a 504 plan, an LD-IEP, an EBD-IEP, and an OHI-IEP.  SPED people like this do an immense amount of damage because they have more power than parents and often know less.

It seems that something happened after this woman hung up on me.  She was adamant that Eadaoin was to be put on a 504 plan because of the neuropsychologist’s language in the neuropsychological documentation.  She didn’t have any concept of what an Other Health Impairment IEP was (OHI-IEP).  She called me yesterday with a brand new story.  It went something like this:

“Hi.  Uh…so…the 504 plan is off the table.  The school doesn’t want that.  They want Eadaoin on an IEP as soon as possible receiving as many accommodations as possible, and they want her getting supports around math.  I went back and read the report.  It was a really thorough report.  They did some really in-depth evaluations.  You were right.  We don’t need to evaluate her for anything here.  We just need to observe her.  And then we’ll move forward with getting that IEP going.  So, do you get that? The 504 plan is off the table.  They want her having services.”

My mouth was hanging open.  She sounded like she was going to cry.  I started to feel empathy until she said this:

“I guess I have to get this done in something like thirty days once the prior written notice is signed.  So, I’ll do my best to try to meet that requirement.”

What?! That is the f**king law! She’ll do her best to fall within the requirements of the law? Is she brand new to SPED? She got a little snurpy on the phone when I told her that she was required by law to complete the IEP evaluation at the end of 30 days.

So, there it is.  I don’t know how it will end, but, apparently, it can happen! Schools can and do override a SPED representative.  We’ll see how this drama plays out.

Will Eadaoin end up with an IEP or a 504 plan?

Will Vajessica’s evil twin stop trying to kill her in order to steal her husband?

Will Carlyle and Jeff tell their wives that they are, in fact, sleeping with each other?

Will Carlyle and Jeff’s wives tell them that they already know and don’t care because they, too, are lesbian lovers?

All this and more in…”As The SPED Turns”.  Or, at least, that’s what it feels like.