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.

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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.

Meeting George Costanza

Doireann turned 18 yesterday.  I am now the mother of an 18 year-old.  I am sharply inhaling over that.  Sweating even.  I went out to breakfast with a dear friend yesterday and felt a bit of panic over this, and she kindly said, “You aren’t old enough to have an 18 year-old.  You really aren’t.”  I felt better, and then I felt silly.  Yes, yes, it’s all about me, isn’t it?

Still.  18! She’s going to college in the fall! Where did the years go? I remember everything.  It feels like a rare privilege to be given a baby, doesn’t it? And then you get to love and prepare that baby for adulthood.  Doireann is an excellent human being.  I don’t say that because I’m her mother.  She really is a wonderful person.  I even enjoy the lesser developed parts of her character.  It’s why she is who she is, and I’m going to enjoy seeing how those parts are developed.  Frankly, she’ll probably fight it every step of the way, and I’ll hear about it.

When Doireann was young, she was very obnoxious and stubborn.  I’m not one of those mothers who believes that her children can do no wrong.  On the contrary, I know exactly what’s what.  Doireann loved to push buttons and boundaries.  There was, however, one thing she liked more than anything else.  She loved being right.  She was like a little tsar trapped in the body of a toddler.  She was vengeful, too, due to her above average intelligence.  She could plot and carry out plans.  There’s a reason three year-olds should not be able to read.

Suffice it to say, I realized that I could only parent her so much.  Life experience was going to have to offer her another sort of parenting.  This is what I prayed for since she learns empathy experientially.  Enter Thomas.

Thomas is Doireann’s nemesis, and he has been her nemesis since ninth grade.  Doireann loathes him.  I have heard tale upon tale of Thomas’ disgusting personality, ugly face, and sadistic disposition not to mention his misogyny and intellectual snobbishness.  After almost four years of listening to the storied Clash of The Titans Misadventures of Doireann and Thomas, I had a horrible mental image of what Thomas must look like.  Surely, this must be Thomas:

images

Scut Farkus Thomas

About two months ago while Doireann was ranting about Thomas once again, I remarked that it must be quite difficult to look at the embodiment of Scut Farkus of “A Christmas Story” every day.  Joking at the time, I noted that if Ralphie eventually beat Scut up, then how was she able to control herself? She stopped.  “What? No, Thomas doesn’t look anything like Scut Farkus.”

“You mean that he doesn’t have yellow eyes and pointy teeth? My gosh, I imagined that he looked something like the devil to be honest.”

“You wanna know what the most horrible human being on Earth looks like? Oh, I’ll show you!”

Well, yes, I wanted to know.  The most horrible human being on Earth? Please show me! She immediately found a photo of him and practically shoved her phone in my face.  “This.  This is Thomas!” she declared with evident hatred.

I was ready for something hideous.  Instead I saw this:

George-Costanza

George Costanza of “Seinfeld”

Thomas looks just like George Costanza.  I wish I were kidding, but I’m not.  He apparently has the personality to match.  I couldn’t control myself.  I covered my face and started laughing.  “Oh my gosh, he’s George Costanza! He’s a schlub! Your nemesis is a schlubby George Costanza which is a redundant statement, I know.”

“Who is George Costanza?!” she asked, confused.

How can I explain “Seinfeld” to my 18 year-old daughter? How can I sum up George Costanza? Well, from how she’s described Thomas, I’d say she’s spent the entirety of her high school career getting to know George Costanza by proxy, and I can’t help but laugh.  I loved “Seinfeld”, but I really hated George Costanza for all the reasons Doireann loathes Thomas.  On Monday night, I finally asked her why she still wanted to punch Thomas in the mouth so badly.  She said:

“He is so vile, Mom, because he thinks he knows everything, and he makes other people feel bad about themselves when they don’t know something.  And he just sits there looking smug all the time.  And his fat, stupid face just annoys me.  He thinks he’s better than everyone else just because he thinks he knows things.  Intellectual snobbishness is wrong, and getting off on being right at other people’s expense isn’t right either.  You have to admit when you’re wrong!”

I listened.  I nodded.  She looked down.  She sighed.  “I know that I used to be like that.  I struggle with that, too, but I’ve seen what it does to people.  It’s wrong.  People don’t learn when someone like that is in the room.  He hurts people, and I see that now.”

Thomas’ job is done.  He no longer serves a purpose.  She learned exactly what I could never teach her, and she will never have to see him again in a few months.  This is one of the primary reasons I am against helicopter parenting.  We, as parents, can’t teach our kids everything that they need to develop in order to become good human beings.  Some character traits are developed out there in the world through adversity, and some character traits are filed and buffed away through adversity.  Doireann needed Thomas.  Thomas may have learned something from knowing Doireann although he would never admit it. What I’ve learned in observing this over the past four years is that there may be people in my own life as well who I don’t like very much, but maybe they are present to teach me something, too.

It’s an interesting thought, isn’t it?

 

The Executive Decision

We are a very forgiving household.  This is why almost all my daughters’ friends spend their time here.  It’s also why most of them call me ‘Mom’.  I feel too young for that.  Or, I feel like someone’s mother-in-law.  “Hey Mom!”  It’s a weird feeling to have multiple teenagers call you ‘Mom’, but it’s a sign of affection and respect.  It’s also a sign that their own home lives are lacking in something.  They feel comfortable here.  One young woman comes here to sleep.  Her home environment is highly abusive.  One of her family members has tried to strangle her in her sleep numerous times.  She, therefore, doesn’t sleep well if at all at her house so she comes here from time to time just to sleep.  She slips out quietly in the morning.  I’ve called CPS twice about that situation to no avail.

Another girl comes here to be herself.  She is forced to care for her younger brother who by all accounts meets the criteria for having some sort of developmental disability.  Her parents work all day so she must be his caregiver.  She’s a senior in high school this year, and she’s getting out.  She comes here for a break.  Being a house full of girls, we usually get only girls coming here, but, on occasion, we do get a boy.  He is a transgender boy.  His parents hate him.  They “forget” to pick him up and neglect him.  They ignore him completely.  They gave him a Bible for Christmas.  That’s it.  He comes over to our house occasionally but largely keeps to himself.  He’s skittish and shy and understandably so.  He’s being emotionally abused by his family.

All this is to say that I see a lot of behaviors come and go.  I hear what many adults would deem “inappropriate talk”.  One identifies it and moves on.  Most kids who come here want to be better particularly the ones who call me ‘Mom’.  They want to be respectful.  They, however, may not know how to be because they haven’t been taught well, or they haven’t been given enough real opportunities.  No one has believed in their goodness enough to give them a second or even third chance.  Everyone fails.  Everyone needs to be given opportunities to try again.

There are kids who come here, however, who do not want to be better.  They do not really care.  They have learned to be exploitative to get their needs met, and they’ll display rather cruel behaviors in unexpected ways.  That happened last weekend.  Eadaoin needed help with a school project so she invited one of her newer school friends over to spend the night.  Her name was Lauren.  Lauren was initially quite friendly and extremely talkative.  She talked so much, in fact, that I couldn’t get a moment’s peace.  Wherever I went, there was Lauren.  Lauren in the evening.  Lauren in the morning.  Lauren in the afternoon.  Lauren did not pick up on social cues either, and Lauren spoke very openly about her alcoholic stepfather and his abuse as if it were normal: “You know how adults are.  They drink when they’re stressed.”  She then went on to recount how she, her siblings, and her mother had to leave one night to get away from him.  I just nodded my head and listened.  There were other stories she told about her friends that raised red flags.  To her, it was all fine.  Good.  She was perfect.  Her life was great.

Grace’s friend, her former BFF, came over as well.  That friendship has been evolving as middle school friendships do.  She has been less than kind to Grace during the last year and a half displaying relational aggression.  We’ve been unsure how to handle it.  Does Grace end the friendship? Should she talk to her sometimes? Wanting to believe the best about her, she didn’t want to simply write her off.  These are important decisions for young people.

Grace came to me on Monday morning crying.  She told me that Lauren and her former BFF had called her ‘stupid’.  She had been trying to keep up with them in a board game, but she could not.  This is a reality for many young adults with schizophrenia spectrum disorders and for people taking certain drugs.  There is cognitive slowing.  It can’t be helped.  When she wasn’t able to process the game as fast as they thought she should, Lauren laughed at her and said, “You are so stupid.”  Her BFF laughed at her, too, and said, “Yeah, you are so stupid!”  They then went on to laugh at her together.  It didn’t end there.  Someone began teasing her for not being as physically developed as other girls.  “So, when are you gonna get your boobs?!”  And, that’s when the pointing and laughing really started.

As a mother, I felt something rise up in me that might be called rage.  As a woman who has watched other girls victimize girls in this way, I wanted to punch a hole in my wall.  As a host, I wanted to take these girls and shout at them, “How dare you treat my daughter like that in MY house!”  I did neither of these things.  I had to sit there and collect myself.  I had to take deep breaths.  I wanted to cry on her behalf.  Her face! She just stood there full of shame, tears collecting in her eyes.

At what point do we say, “No more.  That person can no longer come here”? I had to ask myself that question.  I may be called ‘Mom’ by a lot of these kids, but I am not their mother.  I had to remember that.  I am, however, Grace’s mother, and she is vulnerable.  So, I made an executive decision.  “Grace, BFF can’t come here anymore.  She is displaying a pattern of cruelty when she comes here.  I’ve talked to her about it more than once, and she won’t stop.  You cry when she leaves.”  I talked to Eadaoin about Lauren.  She might be a perfectly appropriate “school friend”, but she is not going to be a good choice for bringing home.  She lacks compassion and empathy.  I am truly sorry that she is enduring abuse at home.  That is probably why she has learned to normalize abuse and why she is repeating those behaviors.  She is merely doing what has been done to her.

These red flags, however, must be observed, and we have to follow our instincts.  This is how we learn to make good choices in our relationships.  If I don’t want to raise my daughters to tolerate abuse in their relationships, then I have to make the tough decisions about who will and will not come here.  They have to know that they are worth something.  They are worth more than something.  Do they want to hang out with people who think it’s funny to bully and call vulnerable people names? Do they want to be with girls who engage in relational aggression? This is how we develop a conscience in our children.  We point out these behaviors and ask them what they think.  In the end, Grace cried out of relief.  She had not wanted BFF to come to our home anymore.  She simply didn’t know what to do about it.  She was glad that I made the executive decision for her.  Eadaoin understood, too.  She said that she didn’t realize that Lauren would behave so badly, and she apologized to Grace.

It was a very fine line for me to walk.  I remember being 16.  I tied my identity to my choice of friends.  If my mom didn’t like my friends, then she didn’t like me.  I had to be so careful in how I talked about Lauren to Eadaoin.  I wanted her to know that she could still make good decisions.  I still believed in her, and I didn’t view Lauren as ‘all bad’.

I keep waiting for life to get easier, but I think that’s magical thinking.  I think we just need to increase our stamina.  Life is the ultimate marathon.  People praise and admire those who finish the IRONMAN triathlon or the Leadville 100.  I think finishing life well should not go unnoticed.  It is the greatest test of character, will, and endurance.  Feel good about yourself today.  You showed up for your life.  I guess now it’s a matter of how we show up, isn’t it?

 

Developing Distress Tolerance

One of the core principles of DBT is mindfulness.  Mindfulness has suddenly gained momentum in our culture.  It made the cover of TIME magazine.  It sounds like an Eastern principle or out-of-reach way of life.  To me, it sounds like something that one of my husband’s friends would pursue back in the day.  My husband had a friend who fancied himself a writer.  I don’t mean that he wanted to write.  I mean that he wanted to cultivate a rarefied writer persona in which he grew out his hair, never shaved, drank scotch, started smoking, and talked about himself.  A lot.  He began wearing black turtlenecks and refusing to read genre fiction anymore.  When I hear the word ‘mindfulness’, I imagine my husband’s friend taking a drag on one of his filterless cigarettes, exhaling, and then saying, “I’ve decided that I need to go out into the desert to become more mindful.  Perhaps I will bring my Dostoyevsky and my typewriter…and an extra turtleneck.”

Incidentally, he did finally write a novel and self-publish it.  It was one of the worst novels I’ve ever tried to read.  He went back to being a programmer.  Oh, and he started bathing again.

So, what is mindfulness? I’m going to define it quite simply.  Mindfulness is being present.  That is as simple as I can put it.  I can almost hear a crowd of people say, “What? That’s it? Well, that’s easy.”  Not so fast.

To be truly present in each moment means that you do not try to escape whatever is happening around you, to you, or within you.  It means that you stay put and become an observer of your surroundings, others, yourself, your bodily sensations, your thoughts, and your own responses to all the above.  This requires distress tolerance, and it is the level of distress tolerance that a person has that, in my experience, determines how mindful they can be.

Let me give you an example from the adult experience:

Bob and Anne are married.  Anne is 8 months pregnant with twins.  Anne has been on bed rest for almost the entirety of her pregnancy due to complications brought on by hyperemesis gravidarum.  For Bob, this has meant no sexy times.  For 8 months.  Bob is about to lose it.  He thinks about sex all the time.  He misses his wife.  He misses what their lives used to feel like.  He wants to have sex.  He feels like he needs to have sex.  He’s pretty sure that he can’t take another second of feeling this sexually amped up.  He would ask her for oral sex, but he doesn’t want to make her throw up.  He’s been watching her suffer, feeling helpless, so that her body can bring their two beautiful babies into the world.  He doesn’t want to add to that.  What about manual stimulation? She’s so weak and completely uninterested! He doesn’t want to be that guy.  He loves her! But, he’s going crazy! He hates feeling like this.  Sex, sex, sex, sex.  That’s all he thinks about now.  Not the babies.  And he feels guilty.  And horny.  All the damn time.  He wants to get away from himself.

Welcome to adulthood.  It sucks, doesn’t it? This is a very realistic picture of the Mindfulness Crossroads.  Bob could look for a short-term exit strategy to avoid feeling as he does, or he could develop distress tolerance which would develop emotional maturity, empathy, and a stronger relationship with his wife.  Make no mistake.  It is very hard.  This is why mindfulness sounds like a pretty word but can feel almost impossible in the moment.  It’s the distress tolerance factor.

In cases like Bob’s, porn would be the go-to imaginary partner/exit strategy.  It’s a quick shot of anesthesia in the moment, but, after it wears off, Bob is right back where he started.  It’s certainly understandable.  Bob, however, would not develop the distress tolerance to get in there, neck deep with his wife and ride out what is sure to be one of the hardest things she’s ever endured as well.  Ordeal is a powerful experience that forges lasting bonds between people particularly partners.  It takes a great deal of mettle to volunteer to stay in the ordeal experience when there are so many exits available through cultural distraction like pornography, endless entertainment options, the legitimacy and worship of busyness, consumption, and the cultural acceptance of personal entitlement at the expense of others in the name of the pursuit of happiness and personal comfort.  The development of distress tolerance so that we can learn to stay present and aware of our own changing inner climate, be present for others, and develop interpersonal skills that will cultivate stronger bonds be they in personal or professional relationships is not an idea that is promoted, but it’s impossible to develop mindfulness without it.

Learning to increase our tolerance for distress so that we can be mindful is probably one of the best things we can do for ourselves not to mention one of the best things we can teach our children.  We might start feeling like we can’t deal with certain things at all.  I used to feel this way about my mother.  I had zero distress tolerance for her or for anyone who behaved like her.  Over the years, I have learned to tolerate behaviors that remind me of her.  What’s more, I can stay present to myself and my surroundings when I’m with someone who decides to channel Joan Crawford’s Mommy Dearest.  I have developed distress tolerance.

We are teaching Grace to develop distress tolerance.  It’s a process made up of baby steps, but it’s an important process.  She will like herself more and more when she knows that she can tolerate and even do well under pressure.  She may not be able to tolerate as much distress as others, but she can learn to tolerate more as she matures.  This is not an accidental process.  It’s deliberate.  That is the choice set before all of us.  For me, when I’m experiencing a feeling that I strongly dislike like rejection or emotional pain, I will sit with it for at least five minutes.  I will not compartmentalize it or try to escape it.  I will practice tolerating the pain.  Please note the word ‘practice’ here.  Mindfulness is a practice.  We practice observing the thoughts that are floating through our minds without judging them.  We practice paying attention to our feelings.  We practice observing our environments.  We practice staying present to our feelings no matter how uncomfortable.  When we’ve had enough, when we’ve stretched ourselves as far as we can, then we stop practicing.  This is how you increase your mindfulness endurance.

I want to refer you to a resource.  It’s a curriculum called Mind UP.  It teaches mindfulness combined with neuroscience to children and teens.  DBT shows up in there as well.  I have a friend who is using this curriculum at home with her daughter, and it’s proving to be very successful.  I am going to implement this with Grace, Eadaoin, and Milly.  Distress tolerance is something that we will continue to talk about as we continue our mindfulness journey.  Life doesn’t get any easier as we grow.  We need to add to our toolboxes so that we’re successful both personally and professionally.

Resources:

The MindUP Curriculum: Grades 6-8

The MindUP Curriculum: Grades 3-5

Putting on Our Oxygen Masks First

Put on your oxygen mask first.  I’ve been told this a lot.  It’s not advice I’ve really taken to heart nor truly understood, and I’m not the first mother or caregiver to admit that.  At least I’m pretty sure I’m not.  It isn’t because I’m a martyr.  I’m not.  That was my mother.  “I’ll just sit over here while everyone has a good time over there! I won’t have a good time! I’ll cry! I’ll be sure to look like I just ate a lemon, too!”

Our mothers.  They do have an influence on us and how we parent particularly if we are women.  I am who I am as a woman and mother, in part, because of who my mother is.  I see that so clearly now.  The epiphany hit me while we were decorating our Christmas tree oddly enough.  Grace and Milly chose the Christmas-themed movie again.  Last year, they chose “Elf”.  This year, they chose “Home Alone 2”.  My husband groaned at that, but I think it’s a funny movie.  I happen to like the pratfalls and the chemistry between Joe Pesci and Daniel Stern.  As we watched the plot unfold, once again seeing young Kevin get left behind but this time at the airport, I remembered my mother.  It wasn’t a painful memory.  Just a reappearance of forgotten facts.  My mother left me at the airport when I was about seven years-old except, unlike Kevin’s parents, she did it on purpose.

It was a strange thing to ponder.  The juxtaposition of experiences wasn’t lost on me.  Remembering my mother’s behavior and my childhood predicament in the midst of decorating the Christmas tree with my own family was surreal.  As a child, I recall thinking that it was normal for my mother to do odd things, and I never thought much of it.  She dropped me off at the airport on a Friday afternoon and simply left me there.  She had “plans” i.e. It was Friday night in 1979.  Let your imagination run wild, and you’d probably land on the right thing when it comes to my mother in the 70s.  I was supposed to take a flight to a tiny airport near Louisiana where my father lived only the flight was cancelled, and I was alone and essentially abandoned at the airport.  She never stayed to see to it that I actually boarded a flight that took off.  I was at the airport until the wee hours of the morning hanging out with the flight attendants in their “room”.  I remember that they smoked and talked about dating, handsome pilots, and sex.  It was the 70s after all.  My father was forced to drive two hours to retrieve me because my mother was unavailable after she left me at the airport.  He finally arrived at almost 3 AM.

All this is to say that it occurred to me in a tangible way that my mother was an irresponsible party girl who simply abandoned her young child at one of the largest airports in the United States so that she could go out and get drunk and get laid.  I’ve always known that on some level, but I really understood that on Friday night.  And, I’ve spent a huge portion of my life not being like her. Defining myself in terms of being her opposite. Where she spent her entire life only putting on her own oxygen mask, even stealing everyone else’s, I have spent my life making sure everyone else had theirs at the expense of myself, in part, to prove to myself and others that I am nothing like her.

This is the root of my caretaking.  Not caregiving.  Caretaking.  Why discuss this? I’m talking about this because it’s December 1.  For many, the advent of the holiday season is the beginning of the most stressful time of year.  We caretake by spending too much money on everyone at the expense of our own financial health.  Guilty! We do too much, never saying no, because we don’t want to hurt anyone’s feelings.  We stay up far too late baking, preparing, decorating, and making sure that everyone else has a meaningful holiday even though we might feel like we’re going to collapse.  We feel as if we’re responsible for everything even though we’re not, but when you’re a caregiver you are responsible for a lot.  This is a triggering experience because it can bleed into old caretaking habits and beliefs like, “I’m responsible for you and your happiness.” So, we put on everyone else’s oxygen mask and become too exhausted to put on our own.

Some people get an emotional charge from doing this.  They need to feel needed.  It gives them a sense of worth.  Me? That was never my thing.  I tend to feel cloistered.  I needed to know that I wasn’t her, and, at the same time, she parentified me.  I was forced into that caretaking role at a very young age.  Children of alcoholics will be familiar with this dynamic.  The best thing you can do for yourself and your family is a personal, fearless inventory and be honest.  Is this familiar?

Do you find yourself always concerned about other people’s needs? Do you feel that your needs don’t really count? Do you feel as though you have to take care of other people’s feelings, but no one seems to care about yours? Are you surrounded by people who need you? Is your self-worth dependent on being needed?

Do you go out of your way to make sure that you don’t cause anyone discomfort? Do you find yourself trying to help someone with an addiction, but you just enable them to continue? Do you believe that you know better than other people how they should run their lives?

If you have the Caretaking Pattern, you are caring and compassionate toward others, but often at the expense of your own needs or desires. If you have this pattern strongly, you will find yourself constantly taking care of others, financially, logistically, and emotionally. At some level, though, your caring comes with some strings attached. You have a deep desire to be appreciated for all that you give to others, rather than giving without concern about what you get back. You may hope that people will like you or not leave you in return for your efforts.

You may take pride in being a “mind reader.” With a strong Caretaking Pattern, you get a lift from providing assistance that you believe people need, even before they ask for it. You may frequently give too much help, and often at the expense of taking care of yourself. You may regularly be the last person to leave a party even when you’re exhausted because you’re always helping the host tidy up. You may believe that all of your giving to others is building up a pool of help and favors that you can call upon someday. Or you may believe that by reading the minds of your loved ones, you will be able to expect them to do the same for you—that they will know and deliver the support you want without you ever having to ask.

Some level of the desire to help others is natural and healthy. We are, after all, social beings who need interpersonal support to get along in the world. But if you find yourself regularly sacrificing your own comfort for the sake of helping someone else—for instance, if you give up a therapeutic massage appointment because your sister “just has to have your opinion” on a new couch she’s buying—you very likely have the Caretaking Pattern.

In fact, your Caretaking part may assume that other people aren’t as capable of taking care of themselves as you are. You might believe that you “know better” when it comes to what would be good for someone else. Unless this person is a small child, though, it is unlikely that your perception of someone else’s needs is more valid than their own.

For a variety of reasons, you may not have received feedback from others that your Caretaking is a problem. If you have the Caretaking Pattern, you probably attract people who may, on some level, like being taken care of or who become dependent on you. If you have a Caretaking Pattern, you may have people in your life whom you believe would suffer if you were to stop caretaking them, and you may have a sense of enjoying “being needed.”

The key to knowing if you have the Caretaking Pattern is to look at how often you are meeting your own needs. If you are always putting yourself last, if you are tired and feel as though you are responsible for making sure other people are okay emotionally, logistically, or financially, you have the Caretaking Pattern.

False Belief of the Caretaking Pattern: I am responsible for other people’s feelings. I must do what I can to make them happy and keep them from feeling pain or discomfort. (from Beyond Caretaking)

Be good to yourself this holiday season and put on your oxygen mask first.  If that idea is foreign to you, makes you feel guilty, or even causes you to think something like, “I can’t do that! What about ______?”, then explore those responses.  Develop some curiosity around why your needs are secondary to everyone else’s.  I know what drives me.  It takes time to learn new habits even when you know what you should be doing.  The ‘doing’ is the hard part.  Let this be a gift to yourself and consequently those you love.  The gifts of personal responsibility, respect for boundaries, and autonomy are three of the best things that you can offer someone.  In turn, you are left with a sense of freedom, a sense of self, and personal empowerment.  The result? Peace within our relationships.  Whatever your belief system, peace is one of the primary blessings of the holiday season.  It is one of the wishes that everyone passes on to another during this time of year.

Shalom.  Peace.  Pax vobiscum.  Peace on Earth.  Good will towards men.

May that be true for you as we all find our way through the din of the holidays.  May you make your peace as you put on your oxygen mask first.

Shalom…

Resources:

Beyond Caretaking: Balancing Giving with Self-Care by Jay Earley PhD

Dr. Earley’s website

Stop Caretaking the Borderline of Narcissist: How to End the Drama and Get on with Life by Margalis Fjelstad

 

A Meditation

I was pondering the state of the union last night (i.e. thinking about my marriage).  This blog covers a lot of ground.  Keeping the magic alive is easier when you aren’t caregiving.  I’ll be honest.  Caregiving sounds almost pleasant.  Even when I think about caregiving, I picture bringing a piece of pie to my grandmother.  That’s what the word conjures in my imagination.

Say the word ‘caregiver’, and I see myself offering gentle care to quietly needy people.  Or, nurses offering water to patients.  Or even mothers and their young children–the primary caregivers.  These images are not congruent with reality when it comes to giving care to an individual with mental illness.  I don’t know what life is like for someone else.  I can only speak for myself.  Mental illness is a game changer.  A permanent mental health illness diagnosis like schizophrenia is a life changer for everyone.  Schizophrenia diagnosed in a child? Our entire family has been changed by Grace’s diagnosis.  Doireann’s personal essay for college entry was about how her life and Weltanschauung had changed since schizophrenia entered our family.  She, too, has been a caregiver.  Eadaoin has been a caregiver.  Even Milly has been a caregiver.

We have all had to learn to offer care to Grace despite our own abilities in the moment or even desires.  We’ve all had to give things up.  Caregiving becomes 24/7, or, at least one parent has to step into that primary role.  That’s me.  I am the case manager, caregiver, and on-call emergency contact at all times.  I can makes plans, but those plans are subject to cancellation at all times.  There is no family to call for back-up.  My husband is my back-up, and if he’s out-of-town or unavailable…

A few years of this creates bone-deep exhaustion, and my husband and I just want to lie down and vegetate.  We’ve achieved something spectacular if our feet touch.  “Oh look, our toes are touching!”  It takes concentrated effort to make knees touch.  Caregiving is exhausting when you’re the therapist, the case manager, the heavy, the parent, and the end all and be all for a vulnerable person.  It’s even harder when there are others standing in line behind that person who need you, too.

But, this is life.  How do we make our circumstances work for us to propel us forward rather than oppress us? This is a question that I ask often.  Not everyone cares for a mentally ill child or even a child with special needs, but everyone has a battle to fight.  Everyone.  Every single person with whom you cross paths has a personal dragon to slay.  Some have more than one.  Some people’s lives are overrun.  In any case, this is what makes humans alike–suffering.  Your station, race, gender, religion, sexual orientation, and anything else don’t preclude you from suffering.  In this, we can all come together and agree.

The view I have chosen to take then is one of personal development.  It’s easier to see it in my children than in myself.  My daughters are now keenly aware of the mistreatment of others particularly those who are vulnerable.  Doireann, who learns empathy through experience, is now almost ferocious when others make ignorant remarks about mental illness.  She has made it her goal in life to educate others admitting that she was once a person who knew nothing about mental illness.  Eadaoin has always been sensitive to social exclusion, but she is far bolder now with her friends if they mistreat a peer in school with special needs.  She goes out of her way to befriend and express affection to her special needs peers, educating her friends and acquaintances on how to treat everyone.  Milly is the biggest surprise to me.  Milly has begun to defend her special needs peers at school.  Elementary school is very difficult socially for anyone who is different.  It is not uncommon to see children running away from a child with Down’s Syndrome yelling, “Monster!” Something like this happened in front of Milly, and she scolded her neurotypical classmates explaining that all special needs children were just like they were.  They just had different needs.  It was wrong to mistreat them, and then she played with one of these children during recess.  She explained to me that one of her friends apologized for making fun of a particular child and never did it again.

Compassion.  This is the fruit of suffering.  There is really no other way to learn it.  Empathy is the ability to put yourself in another’s shoes.  Compassion is the drive to do something about what you feel after you’ve done so.  It is active.  It is never passive.  Suffering and ordeal grow compassion in us.  When we can approach our painful circumstances through the lens of character development rather than a “Why me?” paradigm, then we are far more empowered to move forward rather than stagnate.  The members of our family who are as affected by those circumstances can learn to see themselves as empowered as well.  Suffering can be looked upon differently–a portal to greater understanding, kindness, patience, and personality development.  We can’t really give that to our children.  Life develops that in us, but we can frame it for them so that they can see it more quickly in themselves and others so that ordeal becomes valuable rather than loathed.

If we are looking for opportunities to become better and more mature with a better developed character, then suffering is your gateway into that process of development.  This is what I’ve learned.  Resisting that process leads to more suffering.  Embracing it and going with the flow quickens our development leading us to the most unlikely place.  Gratitude.

At some point, we will actually be grateful for the events that we once tried to escape.

Life is so brilliantly odd that way.