A 13 Year-Old’s Holiday Plea

Milly, my 13 year-old daughter, is a very serious girl.  She always has been.  Yes, she is on the autism spectrum, but it doesn’t seem to be much of an issue anymore.  Sure, she has an IEP.  Yep.  She has a social skills class.  Of course, she thinks that it’s all a big ol’ waste of time.  She experiences the world differently.  Why do her peers preen and wear make-up and worry about their hair? Why bother impressing the boys? They are so unimpressive right now anyway according to her.  They are nothing like the totally impressive K-Pop boys of EXO and Super Junior who Eadaoin, Milly’s sister, has been more than happy to introduce us to.

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Super Junior

Milly prefers to watch Good Mythical Morning , read books, build massive LEGO structures, and watch important documentaries that make her feel “uncomfortable”, as she puts it.  She says, “Mom, I know that this is hard to watch, but I feel that it’s important for me know this because I’m a part of the world.  And, I need to know about things even if they’re hard to know.  How else will I ever be able to help?”

Something crystallized for her this morning when she saw the photos on the cover of the New York Times.

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A starving Sudanese girl in 1993 (Kevin Carter/Sygma via Getty Images)

 

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Phan Thi Kim Phuc after an accidental South Vietnamese napalm strike near Trang Bang in 1972 (Nick UL/Associated Press)

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The body of Alan Kurdi in Bodrum, Turkey (Agence France-Presse)

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5 year-old Omran Daqneesh in Aleppo in August (Mahmoud Raslan/Aleppo Media Center)

My daughter saw these images this morning as we sat in our local Caribou waiting for school to start and asked, “What…is…this? What is happening?”

I explained.  Syria.  Civil war.  The refugee crisis.  She started crying as she looked around.  She banged her fist on the table.  She then asked, “May I take this to school? I need to show my teachers.  They aren’t telling us any of this! We aren’t learning about this! Everyone talks about wanting new this and new that.  But this? I bet things would be different if my peers knew about this! I might get in trouble, Mom.  Is it okay if I get in trouble for this?”

“Knock yourself out,” I said.

She came home looking defeated.  “No one seemed to really care, Mom.  Everyone just wants stuff.  People are dying.  People have died.  I can’t live with it.  The school wants us to buy gift cards for all the staff.  What if we donated all that money to the refugees instead? Wouldn’t that do something?! I’m so angry.  I wrote this in class just to get out my feelings, but I have nowhere to put it.  I wish I could post it or something.”

“I’ll post it,” I told her.

This is what she wrote:

SCHOOL: “Shower your staff with gift cards!” NO! Donate to Syrian Refugees. YES!

Kids here want new phones.  They want new outfits and hate school.  Why wouldn’t parents educate their children about this? They’re teaching their kids to be racist and unkind (there has been racist language used in Milly’s school by other students).  There are kids in Syria who are being killed and left for vultures.  I think at least half of the kids at my school don’t know anything about this.  They say that they hate school.  Look at our school.  We have iPads! Kids in Syria would do ANYTHING to go to school, to have nice clothes, to be SAFE.  We need to do what we can to help.  Donate.  Do something.  Or at the very least learn about it to understand what’s going on and how privileged we are.  We need to make a change.  Our school wants us to “shower our staff with gift cards”.  Why do that when we could help people who need it? Children are struck with terror running for their lives and being publicly humiliated.  And our school wants us to donate gift cards to the staff.  Our staff already has homes, clothes, food.  We should be giving our money not to our staff but to help Syrian refugees who need it.

Donald J. Trump doesn’t want to help them.  He says that “they will steal our jobs”.  They don’t want to steal our jobs.  They just want to be safe and to survive.  We should be letting them into our country and we should help.  Our country should create more jobs and that would help the economy grow.  Kids say that immigrants are bad and that they will take our jobs.  They say these things because this is what they were taught.  We need to make a change, to be kind, and help other people who are less fortunate than we are.

The 7th grade Social Studies curriculum is ridiculous because there is no current events taught.  Instead we learn about the Bill of Rights, the Constitution, and the presidents which are all important, but we could at least talk about what’s going on a little bit.  That’s why it’s up to us, the students, to make a change.  Before today, I barely knew anything about what’s going on in Syria.  No thanks to our school who didn’t teach us anything about what’s happening there.  Today I looked at the New York Times and was shocked to find out what is happening.  In school we are supposed to learn.  It doesn’t have to be a part of our curriculum.  If more kids learn about what is happening, the more help Syrians could get.  So, do your part.”

Strong opinions from a strong-minded girl, but she’s a girl of action.  She asked me to forgo giving her this month’s allowance and donate it instead.  She also asked me not to spend any money on gifts for her this holiday season.  Instead, she wanted any money I spent on her to go to the Syrian refugees.  She didn’t need anything.

All politics aside, she is right.  If we have more than we need, then we are blessed.  Stop for a moment and think about what you might be able to do.  Donate $10? Do it then.  Millions of human beings have been displaced.  They have lost everything.  They are no different from you and me.  It is our obligation as human beings first, all other views and opinions second, to come alongside them and help.  As Milly said, “Do your part.”

This is how you can:

The White Helmets Hero Fund

The White Helmets captured international attention through their bravery, and were reportedly in the running for the Nobel Peace Prize earlier this year. The 2,900 strong group of civilians have been carrying out rescue missions after government airstrikes since 2013, united by their motto of ‘to save one life, is to save all of humanity’.

The International Rescue Committee

IRC aid workers are meeting people who have fled Aleppo as they reach the nearby town of Al Dana, one of the many neighboring areas bracing themselves for the influx of displaced people driven from their homes in the city. Donations will go toward providing families who have escaped the city with food, fuel and emergency supplies including mattresses, blankets, soap and towels.

Hand in Hand for Syria

Hand in Hand for Syria was set up soon after the beginning of the war in 2011, and uses its extensive networks on the ground to implement aid in some of the most difficult-to-reach places. Some of the organization’s members living in Eastern Aleppo were forced to abandon their work after pro-government forces took control of the area. Donors can contribute toward the emergency appeal for families fleeing from the city, which will provide food, medical aid and winter supplies.

International Committee of the Red Cross

The ICRC and its local partner, the Syrian Arab Red Crescent (SARC), have remained committed “to act as a neutral and impartial humanitarian intermediary” throughout the Syrian Civil War. Donations to the Red Cross and the Red Crescent have enabled food and medical deliveries to those in need, and the two groups issued a plea on Tuesday to those involved in fighting “to put humanity ahead of military objectives.”

Save the Children

Save the Children has been working to provide children and their families with warm clothes, shelters, protection, clean water and emergency care. In a statement on Tuesday, the charity said “Families who are desperate to leave are being shown no dignity or humanity. We must at least now end this carnage and safely evacuate the remaining civilians.” (courtesy of TIME)

Milly’s originally penned Letter to Everyone

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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.

 

 

The Gift of The C-Word

I can be slightly naïve at times.  Well, not naïve.  Optimistic perhaps.  I tend to believe the best about people and circumstances, and, when people behave like absolute asshats, I’m almost always surprised.  It’s as if I did, in fact, just fall off that turnip truck because I was indeed born yesterday; and, there I am lying helpless in the road wondering how I got there.  Oh, right, I was shoved.

I am being tongue-in-cheek because it’s fun.  The very minor incident to which I am not so subtly alluding was annoying but, at the same time, surprising to me.

An anonymous person posted a comment to my blog a few days ago.  He wrote:

You are a cunt!

Classy, right?

Yes, yes, this is a troll, and there is one mantra that we should all follow when it comes to trolls:

Do not feed the trolls!

Trolls know how to take the piss, don’t they? Calling a woman a bitch isn’t so bad.  How many women have been called that and worse for ignoring the clumsy gropes of some drunk guy at a bar? I have.  My girlfriends have.  Accidentally cut someone off in traffic and some angry person will yell, “Bitch!” Women are finally beginning to reclaim that word in order to rob it of its power.  The C-word, on the other hand, feels altogether different, doesn’t it?

Why?

Well, Tina Fey tackled this issue on 30 Rock in the “C-Word” episode when her character Liz Lemon overheard Lutz, one of her writers, call her the dreaded C-word behind her back.  Her response? She wanted to fire him.  Yep.  That’s how most women I know feel about being called the C-word.  We have a visceral response to it, and if we could fire the person who spoke that word over us, then we just might.  Liz Lemon ran to her producer and shouted, “We need to fire Lutz! Fire him!” When she explained her reasons, both Pete, her producer, and Frank, one of the writers, grimaced.  They, too, know of the C-word’s power.  And, why does this word hold so much power? What was the conclusion? It is so powerful because there is nothing that a woman can call a man that is as degrading.  As misogynistic and, well, defiling as the C-word is to women, there is no linguistic match for a man.

My husband and I sat around one night and tried to come up with an equivalent if you can believe that.  We came up with one, but it lacks the punch that the C-word packs.  I think that Tina Fey is right.  This is why trolls love this word so much.  This is why people aiming to shock and hurt women love to use this word.  It degrades and defiles in a way that few other words do.  There are erotica authors who have decided that it’s time to reclaim this word, I’m concluding, to rob it of its powerful punch to the female gut.  They freely use it in their writing.  It’s a jarring read to be sure, but it’s interesting to watch the linguistic evolution of this word.  Where might this word be in another generation? Will it feel as truly disgusting as it does now? Will I want to plug my ears and cry, “Lalalalalala!” when I hear it in 25 years?

Why write a post about the C-word? Firstly, to be frank, it pisses me off that there are people out there who find trolling entertaining.  It’s a complete waste of time, and it can hurt very vulnerable people.  Secondly, I have four daughters, and I’m a woman.  This sort of behavior is not acceptable no matter its form.  I blackholed that comment, but how does one feel empowered after reading something like that? It’s insidious.  That’s why trolling is potent.  Words are infinitely powerful.  The written word, when aimed directly at a person, can carry the weight of an anvil, and that is the take away.  Words can be weapons, or they can be shields.  They can edify and build a person up higher than the highest skyscraper.  They can also destroy a life.  We get to choose.  Isn’t that incredible? How many things in life do you actually get to choose freely?

You always get to choose your words.

That is a brilliant thought.  Many of us are caregivers to very vulnerable people.  We know just how weighty each word that we speak is because we have seen just how destructive other people’s words have been.  I am going to try to pay more attention to my words this year.  That is the gift of the dreaded C-word.  It’s potency inversely teaches us just how powerfully good we could be when we choose the better words instead.

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Incidentally, the brilliant comic The Oatmeal has attempted to rob the awful C-word of its “terribleness” in his wonderfully irreverent and funny comic The Terrible C-Word.  For a good laugh, you simply must read it!

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The Oatmeal’s The Terrible C-Word

 

 

Endings and Beginnings

2014 is coming to a close, and I am so glad.  This has been one helluva year.  I’m having yet another brain MRI today–the day after Christmas.  The year has to go out with a bang, I guess.  Well, I say, let it! So long as 2015 is inaugurated with celebration.  We made it through 2014, and we’re better for it.

My girls and I spent an afternoon with one of my favorite friends the day before Christmas Eve.  Our two families have had a tradition for a decade now.  We get together and make gingerbread houses.  When we began this tradition, our children were young, and it was really just the two of us frosting and decorating the cookie cottages while attempting to keep the little hands from stealing all the candies.  Odd traditions began.  My friend would unfailingly put the roof on her house upside down.  Every year! She would yell out in frustration, “How could I do this again?!” This year, however, we reminisced about all those imperfections and repeated errors.  It has become mandatory that she put her roof on upside down.  It’s part of the charm.  Our kids, however, took over all the decorating this time.  Eadaoin is sixteen this year.  My friend’s daughter is eleven.  The kids no longer needed our help or advice.

We were able to relax in her living room with our warm beverages and chat while our kids decorated the gingerbread houses completely on their own–even Grace.  What a strange feeling.  She asked how I was doing.  Being a close girlfriend, she went for the jugular: “How’s the marriage?”

Isn’t it funny how girlfriends waste no time? We simply ask.  There is no chit-chat.  My answer? Everyone who reads my blog knows that this year has been grueling.  “Better.”  2013 ended on a precarious note where my marriage was concerned.  2014 will end on a better note.  Perhaps in a major key.

So, what happened? I’ll be as honest as I can be in hopes that it might help someone else should they find themselves in a similar spot.  The day I began writing this blog, the clinicians treating Grace–and there were many–believed that she was bipolar.  Within a month of that diagnosis she declined rapidly and was then diagnosed with a schizophrenia spectrum disorder.  She was not yet 11 years-old.  Her overall decline from healthy child to psychotic happened in less than a year.  It changed our entire family life.  Eadaoin is in therapy today, in part, due to witnessing Grace’s psychosis onset.  Doireann is a completely different young woman today because of Grace’s disease.  We are all different now.  Severe mental illness in a family affects everyone, and everyone behaves differently in terms of coping strategies.

Ordeal has a way of distilling personalities and bringing forth cracks within character and the relationships therein.  I am inherently tenacious.  This is both a blessing and a curse.  I do not give up.  I will hone in on a problem and attempt to fix it until it is no longer a problem or until I have died.  This approach to life worked well where Grace was concerned.  This approach to life worked well in almost all former circumstances.  It does not work well within a marriage when the problem is perceived to be a person.

My husband is as avoidant as I am tenacious.  This is his primary character flaw.  We are both exceedingly stubborn in our positions.  The more I pushed him to deal with those things that increased his anxiety, the more inert he became.  This only increased my drive to “solve him”.  What I did not understand was that he was coping with watching his daughter fall apart by using avoidance–his primary coping strategy.  Avoidance behavior is one of the go-to coping strategies used by those with anxiety disorders.  I do know this, but I couldn’t grasp it at the time.  How does one avoid one’s entire family? Why? One does this because one really lacks the capacity to deal with what is happening.

I observed this and insisted that he see a doctor in order to start anti-anxiety medication.  After almost 17 years of living with his anxiety disorder, I needed him to get his head in the game.  I needed my partner, my friend! I couldn’t do all this alone.  So, I issued him an ultimatum.  How awesome.  Ultimatums are never great, but he did see his internist for a physical.  It was then that he casually mentioned his anxiety.  He was given the standard anxiety check list; he passed it with flying colors.  He left with a prescription for Zoloft.  That’s it.

I must pause and say this.  If a person sees a psychiatrist, then one goes back to the psychiatrist every four weeks after beginning a new medication to discuss how one feels after beginning the drug.  The drug is tweaked or even discontinued in favor of a better or different one.  Internists should not manage psychiatric conditions.  This is where we went wrong, and this is also where I knew we were going wrong.  Recall what I said about my husband’s inertia.  Inertia was settling in at this point.

My husband had never taken a medication for his anxiety.  He had self-medicated with alcohol.  He stopped using alcohol at this point in favor of Zoloft.

A word about Zoloft: Zoloft is an SSRI.  On the spectrum of SSRIs, it is the most emotionally blunting while Prozac is the most activating.  Zoloft is also not a well-known anti-anxiety drug.  It does have some effectiveness for social anxiety, but it is not effective for generalized anxiety disorder (GAD).  Lexapro, on the other hand, is in the middle of the SSRI spectrum as far as emotional blunting and activation.  It is also known to treat depressive symptoms as well as anxiety without some of the better known side effects like suicidal and self-harming ideation for which Zoloft is known.

My husband, however, had never known life without his crippling anxiety, and Zoloft’s emotional blunting was just what he was looking for.  That dead feeling inside that the drug provided helped him cope with his own life as a father, provider, husband, and man.  He liked it.  He liked it a lot.  Perhaps he even needed it.  I, on the other hand, despised it.  He went from an anxious but likable man to a vacant, emotional corpse of a human being.  It seemed that there was no middle ground.  It was one extreme or another.

He disappeared from our entire life, but, in his mind, he was present.  He wasn’t.  He was like a wraith.  We stopped having sex.  For two years.  He had no desire.  In fact, he had no desire for anything.  He described it as feeling paralyzed under a heavy blanket, but he sort of liked it.  He just wanted to do nothing.  He wanted to lie in bed all the time or sit in his room.  He slept all the time.  A ridiculous amount of time.  He, however, was not anxious.  I don’t think he felt anything, and that’s the point of Zoloft.  Imagine a person who feels too much or a person who is completely overwhelmed to the point of being almost non-functional.  Zoloft would be very helpful because it would provide a much needed emotional balance.  Or, perhaps not feeling very much for a time would be helpful in order to learn to think rather than feel all the time.  A drug like Zoloft can be very helpful given the right brain and circumstances.  It was, however, not the right drug for my husband.

After living with him for almost two years on this drug, I truly began to believe that perhaps I was worthless and unlovable.  He did almost completely ignore me almost all the time.  There was, however, much to be learned here.  At some point in the middle of this, I realized that, as a woman, I gleaned a great deal of self-worth from the success of my relationships.  This is a rather female point of view.  I gave up a career to stay home and raise my daughters after all.  It’s not as if I have a career to fall back on at this point.  In my mind, what does it say about me if, after all this time, I come out of this with a shitty marriage and mentally ill children? I thought I had to be Martha Stewart for Pete’s sake!

What now? What if he really didn’t love me anymore? I had to get a life.  That was the loudest message that I heard throughout 2014.  Build a life.  I saw it everywhere.  A stranger in a restaurant even came up to me and told me that very thing if you can believe it–“Don’t wait for your husband to figure out what he wants.  Go out there and do what makes you happy.  Build a life for yourself.”  What an empowering message.  So, I stopped looking at him and what he was doing.  I started looking at me.  I aimed that tenacity at myself and left him alone.  I let him sit alone in our bedroom for months on end.  I let him sleep the days away.  I started making weekend plans with the girls.  I started…living.  It was hard because I felt like I was leaving something behind.  Something symbolic.  I realized, however, that we must always be bringing something vital into our relationships.  We must always be building our own happiness and internal resources as individuals if we are to attempt to build something worthwhile with another person.  Grace’s illness tapped me out, and I became so focused on her and my other daughters.  I forgot that I was a separate person, too.

So, what happened? He felt my emotional departure.  I didn’t abandon him.  I simply left him alone, and that changed the dynamic in our relationship.  He started asking to join me on our outings.  He was still emotionally comatose, and I was still seething with resentment; but, something was thawing.  Two months ago, he finally saw a psychiatrist, and she switched him from Zoloft to Lexapro.  He recently told me that he had no idea just how dead he felt on the inside on Zoloft until he didn’t feel that way anymore.  He then said, “I should have never been on that medication.”

Yes, I wanted to punch him.  The past two years have gutted me.  Our marriage has suffered in ways that I never thought it would, but perhaps it needed gutting.  There was never going to be an easy way through this leg of the journey with Grace.  It was always going to be horrendous.  We did what we had to do.  I, however, wonder if my health would be better today had he not abandoned ship as he did.

So, what’s the takeaway? I suppose that it’s this: Even if everyone else abandons you, don’t abandon yourself.  There will be crises in life.  Once those crises settle, come back to yourself.  In the end, no one is going to take better care of you than you.  Man or woman, we must always invest in our own development and healing.  That says that we are worthwhile and lovable.  We can’t expect others to love us if we don’t love ourselves.  It is, therefore, crucial that you find those expressions of self-love that are meaningful to you and claim them.  Make them a part of your life in a consistent way.  In this way, you will learn to weather the storms in life be they circumstantial, relational, or existential.  And practice the art of forgiveness.  This has been my greatest challenge and lifesaver.  Learning to move forward without giving up self-respect and, at the same time, granting pardon.  This is the grittiness of life. This is the hard stuff.  Knowing that pain and love often weave themselves together as we grow, and one doesn’t cancel out the other.  They often coexist.  Forgiveness doesn’t ease the pain, and pain doesn’t minimize love.

This is what I’ve learned in 2014.  It’s been a very painful year, but, as I said, I’m better for it.

I hope that as 2014 ends you are able to see where your paths have taken you, find a new horizon line, and begin the next leg of your journey with hope.

Shalom…

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.

 

 

IEPs and Sexual Predators

I had a very interesting day yesterday.  I want to share the good news first.  I’m not sure if I’ve posted here that I open-enrolled Milly into a different school district this year.  I removed her from our home district at the end of the first semester of her third grade year in order to enroll her in a virtual school where she would no longer be subject to the culture and mistreatment of our home district while also preserving her IEP.

Simply put, our home district wouldn’t implement her IEP.  These days, it feels like it takes an act of God through the appearance of Moses himself to get a district to give you an IEP.  It’s as if they view themselves to be Pharaoh.  Entirely above the federal law stated clearly in IDEA and explained even more clearly in the Federal Registry.  At least that’s how my district behaves.  They finally gave Grace an IEP after our state’s Department of Education, at the bidding of The Office of Ombudsman for Mental Health and Developmental Disabilities appointed by our governor, rang them up early one morning and slapped their wrists for “bad behavior”.  Illegal behavior really.

Milly wasn’t ready to return to a brick and mortar school last year, so I did the unthinkable.  I homeschooled an autistic girl.  She needs social interactions to reinforce social thinking scenarios as well as practice, but her anxiety was so high that she wasn’t able to socialize much if at all.  So, we pursued academics at home while we worked on skills independently.  Finally, at the end of her fourth grade year, she told me that she was ready to return to a public school environment, and she was even ready to go somewhere new even if it was hard and meant making new friends.  So, that’s what we did.

But her IEP had expired which meant that we had to start all over again with evaluations.  I hate IEP evaluations.

Yesterday, I went to Milly’s IEP meeting wherein we discussed the evaluation results.  She got her IEP! What’s more, everyone at this school is there to help her.  This school is nothing like her former school.  Her teacher adores her and fully understands autism spectrum disorders.  Milly takes her breaks in the principal’s office with the principal who helps her with breathing exercises.  The environment of the school is validating and cares for the well-being of children.  I feel so much better sending my daughter there knowing that she is cared for and about, and she will now be guaranteed services appropriate to her needs.

One topic that was raised during the IEP meeting was the notion that Milly had good boundaries around adults which was unusual for a child her age.  She was reluctant to disclose information about herself, and she did not willingly go with staff members whom she had not met to another place in the building even if said staff person insisted that they were trustworthy because they were a teacher or school employee.  Milly was suspicious because they were a stranger.  It was pointed out by the autism specialist that this was an important quality to have particularly for an ASD girl.

Special needs children and adolescents are often targets for abuse particularly sexual abuse because they often cannot read social cues or discern the intent of another person.  They are often too trusting of others–even strangers.  Or, due to an inability to communicate, they are abused simply due to predator hubris–“I’ll hurt you whenever and however I please! It’s not like you can tell anyone!”

This was on my mind yesterday when I left the meeting.  I have four daughters.  I have and continue to raise them to be aware of themselves and others.  The world is full of good people, but there are people out there who are not good.  People who mean to do harm to vulnerable innocents.

And, wouldn’t you know, I met one yesterday at my local Caribou.  I took Milly out for an afternoon coffee beverage.  She thinks the Vanilla Coolers are fairly awesome so she begs me to take her to our local Caribou almost every day.  I had a jones for coffee (my constant state of existence) so I relented.  That local Caribou has become my Cheers.  I dropped my grey pashmina in there last week, and two employees yelled my name while waving it in the air.  I was both embarrassed and comforted.  First of all, how often do I wear that thing, and, secondly, how often am I there? Everyone really does know my name!

While I was licking the whipped cream from the top of my coffee drink, I noticed a man staring at me.  Not glancing.  Ogling.  With his mouth hanging open.  I made eye contact with him.  He continued to stare.  He stared at my mouth.  He was seated in such a way that his back was supposed to be to me.  In order to watch me drink my coffee, he had to turn his entire body around.  I felt more than a little disgusted by his behavior.  As soon as Milly started licking the whipped cream from her straw, his eyes darted to her mouth.  He leaned in to his stare and shifted in his chair.  She’s 11 for crying out loud! I watched him watch my daughter drink her coffee beverage, and I felt anger with a mix of fear.

This man didn’t hide.  Oh no, he started rubbing himself as he watched my daughter continue to lick her straw.  Right there in a public place! He shifted and rocked and rubbed all the while staring with his mouth hanging open.  He never blinked.

I had seen him before.  I brought Eadaoin, Grace, and Milly to Caribou a few weeks ago, and he sat behind them in a corner.  He had done the same thing then, but I couldn’t see his hands.  I saw him shifting, rocking, and staring then, too.  We actually left because we were so uncomfortable.  He wouldn’t stop staring at us.  I had hoped to never see him again.

In the middle of his predatory ruminations, three high school girls came in, ordered coffee, and sat at a table just a few feet from him.  He looked like he might explode.  He was undressing them with his eyes.  He ogled their behinds, their chests, and continued to shift and rock in his chair.  Then a girl who looked to be about 10 years-old walked by him, and I saw him wrench his body in his chair to stare at her.  He behaved like a starving kid in a candy shop.  I wanted to vomit.

I stared at this man.  He made eye contact with me numerous times.  Milly asked me if I was okay.  She said I looked like I was going to kill someone.  Finally, I texted a friend.  I needed to do something.  He told me to tell the manager.  It took me a moment to find my courage.  I’m a survivor of sexual abuse.  There was a part of me that was irrationally fearful of him.  Instead, I pretended to text someone and took a picture of him with my phone.  I know the manager, and she was there! I walked over to her.

“Pretend that I’m showing you pictures of my kids and laugh,” I said quietly.

She looked alarmed.

“Just do it.  Laugh.”

She laughed.

“There is a man in here watching women, young women, and girls.  He sits in here, pretends to work on a laptop, watches these girls and women, and rubs himself or gets off by rocking and rhythmically shifting in his chair.  I’ve seen him do it today, and I saw him do it another time.  I’m going to show you a picture of him now.  Tell me it’s cute because he’s probably watching.”

She looked sickened but tried to follow along.  As soon as she saw the picture, she said, “I know who that is.”

I saw her jaw clinch.  She looked as angry as I felt.  I could tell that she was trying to figure out what to do.  The assistant manager is a male.  She was going to start by alerting him.  Most of the employees are women.  I then told her to laugh as I walked away.  It had to look like we were talking about something funny.  So, she laughed.  I laughed.

I went back to the table, got Milly, and left.

That’s not an easy thing to do.  I was trembling when I left.  It’s easier to walk away.  It’s easier to never return, but that’s my place! I go there! I’m not going to allow a sexual predator to “window shop” and do nothing! I also want my daughters to know that we can do something.  We don’t have to sit there and take it as women.  If a man is behaving in a predatory way, then we can and should say something.  We are right to do so because young girls and adolescent girls often don’t notice or notice but feel helpless to do anything simply because they don’t know what to do; or, they’re too scared to do anything.

I pondered the possibility that this could be a misunderstanding.  What if this man simply had a scorching case of jock itch and lacked any and all social skills? Then, someone needs to school him on how to behave in public:

  • It is not appropriate to scratch, rub, and rock oneself in public.  Go to the bathroom if you must repeatedly touch your crotch.
  • It is never appropriate to stare at people to that extent particularly while rubbing one’s groin.
  • Men should not ogle little girls, adolescent girls, and women.  If a man wants to stare at women for hours on end, then pay for that privilege and go to a strip bar.
  • If a man has an STI or some kind of health issue that affects “groin comfort” to the extent that he cannot even sit still, then stay home while the issue is being treated.

All in all, it was a very interesting day.  I hope today is boring.