Raising The Standard

Yesterday morning, Grace was struggling with self-harming ideation.  She’s hit a dip in the road.  I don’t know why.  I don’t know that anyone knows why.  Sometimes people like to blame the progression or evolution of her condition on her budding hormones.  We are a family of late bloomers.  Grace is 13 but still looks very boyish in her body.  Visually, ain’t nothin’ goin’ on there, but I’m sure her endocrine system is busy priming the pump.  As soon as puberty hits and her brain is bathed in estrogen and progesterone, I’m sure we’ll be riding the roller coaster ride again as everyone keeps reminding me.  She’ll get her period, and then she’ll really go crazy.

I, however, get really tired of everyone telling me that.  Like Doomsday is waiting for us.  When you’re a parent to girls, you hear a lot of people talking smack about females.  I can’t tell you how many times I’ve been out and about with my girls when some stranger has approached me and asked, “Are these girls all yours?”  I look at my daughters to ensure that I haven’t picked up a few stragglers on the way and then respond in the affirmative.  Yep, they’re all mine.  “Wow.  Four girls, huh? You’re really in for it when they all hit puberty.  Good luck to you, ma’am.”  I look back at my daughters who have all heard this statement or something very similar countless times before.  Doireann is usually rolling her eyes.  Eadaoin looks offended.  Grace has always been very vocal so she’ll ask, “What’s that supposed to mean?”  Milly is Captain Logic so she is the most rational: “Who was that man, and why was he talking to you?” Exactly.

Is this a common experience for parents of boys? Do random strangers approach mothers and fathers with a group of boys and ask if that gaggle of boys following them all belong to them? Do they make sexist remarks like, “Good luck to you when they hit puberty.  You’ll be finding crusty socks under their beds, porn on their laptops, and changing the sheets every other day! Best to just lock ’em up to protect the general population from being forced to associate with your sons while they experience The Change.”  No, this is not common, but it’s okay to tell the parents of girls that they’re in for a bloodbath of both a physical and emotional nature? Why?

You even hear this in the medical community as well.  When Grace was in the prodromal phase of her illness, I tried to mention some of her symptoms to a specialist.  He told me that she was probably just hormonal.  She was 10.  As a girl, her symptoms were dismissed, even as a 10 year-old girl, because at some point in the next four years of her life she would begin menstruating.  I find that to be unacceptable.  When I mentioned this oversight to a friend who loved this particular specialist, I was dismissed.  “Oh, well, you know how it is.”  No, I don’t.  How is it? Great doctors can’t miss the boat, or it’s acceptable to lump mental health symptoms in girls in with stereotypical female hysteria based on gender bias? Or both?

Where am I going with this? For those of us involved in the world of mental health care by choice or by force of circumstances, we are aware of the gender bias.  Getting angry over it isn’t fruitful.  I think I am feeling something like frustration over the fact that what people like to call ‘realism’ is really just another name for cynical naysaying and a very real lack of awareness.

For example, there are some people in my life that might call themselves ‘hopeful realists’ when it comes to difficult circumstances, but they’re not.  They’re actually quite negative.  I have to be careful with what I share.  They ask how Grace is doing.  If I share that she did well in her skills training, they might say, “That’s good.  We’ll see how long she can hold onto that new skill.”  Or, “Well, she’s stable now but just wait until the hormones hit.  You’ll be right back in the hospital again.”  Please tell me how either of those statements is in any way helpful.  Are they truly affirming or helpful? No.  They are meant to produce fear and anxiety.  Do these people think that I’m lacking self-awareness? Do they think that I’m living under a rock? Do these strangers that approach me in malls and cafés assume that I have no idea what happens to the female body during the adolescent years?

“Really? Something is going to happen to my daughters’ bodies at some point in the future? What’s puberty? Is that a big deal? Please do tell me, strange man, what will happen to my family? Will it be significant? You took the time to come over here and warn me.  Surely, it must be a terrifying experience because you look like you’re scared of little girls.  You even look a little scared of me.  Will there be…blood?”

The people who are the most aware regarding what’s facing their families are the primary caregivers.  Mothers know what’s in store for their daughters.  If a woman had a difficult time with the onset of her period, then she knows exactly what’s facing her daughters.  If a woman was a Judy Blume fan girl who read Are You There God? It’s Me, Margaret over and over again, then she’ll be tuned in to her daughters’ experiences out of empathy.  We don’t need strangers and society at large treating our daughters like the Ragnarök of our family life.  More than that, we certainly don’t need the people in our lives undermining our support system by participating in this paradigm by insinuating that the hard work that our kids have done will be destroyed by a very normal part of human development.  We need support! Our young women need support.  We need someone to just sit with us and be our friends as well as be real friends to our kids.  People who will show humility and authentic kindness, treat our kids like human beings with rights, witness the suffering that’s going on in our lives, and not attempt to fix it.

Being a caregiver is one of the loneliest jobs because we don’t ever get to stop really.  Our friends can ask.  People can bring a meal.  Others can stop over or take us out, but, at the end of the day, everyone else gets to leave and go back to their own lives.  The people that we care for are our responsibility.  No one else’s.  We plan our lives–our minutes, hours, and days–around the person or people we take care of.  We often can’t even eat or go to the bathroom if the person requiring care is with us.  It’s hard to explain to someone who doesn’t live like we do.  They might think they understand, but they can’t.  I thought I understood until it was my turn.  I thought I had a grasp of what it meant because I had an autistic child, but I wasn’t prepared for schizophrenia or a potential mitochondrial disease.  I wasn’t prepared to watch my child disintegrate before my eyes, and I wasn’t prepared to feel so left behind.  I wasn’t prepared to feel so happy about the small victories and so sucker punched when others minimized them.  If you wonder why parents of special needs kids or even primary caregivers to those with profound needs seem closed off or excessively private, this is why.  People seem to feel compelled to remind us of the reality of our situation and future as if we are ignorant, and, at least for me, I find myself, at times, terribly weary of it.  Sometimes I want to shout out, “I know! Do you really think that we don’t know? Why can’t you just be happy for us in this one moment? Just rest in this minute with me.  Just experience this moment of victory to the fullest before it passes.” Mindfulness is not easily experienced by many people.  I am just now realizing this.  There are people who will try very hard to pull you down with their own dark gravity.  They cannot let you stay in your orbit.  They must find a reason to catastrophize and blame.  They can’t allow you to celebrate.  Not even a little.

Yes, it’s true that the onset of puberty is often the time at which certain neuropsychiatric illnesses present.  I’m not denying that, but correlation is not causation.  As much as certain men (and women) would like to believe that the menstrual cycle makes women crazy bitches, there’s simply a lot more to it than that.  Women (and men) can always reserve the right to make very bad choices which will have nothing to do with Shark Week:

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My period made me do it.

And women (and men) can always implement those decisions with a very, very bad attitude–menstruating or not.

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Blame has always been a popular choice.  It’s easy.  Personal responsibility is hard.  Empathy is even harder.  Compassion is the hardest.  It is entirely up to me to create a life that is rewarding even as I take care of Grace and Milly…and Eadaoin.  Life will not stop moving just because I can’t keep up or because, Heaven forbid, I have my period!

 If I need help, then I have to ask for it.  I have to be sure that I’m not participating in blame either.  Caregivers often don’t have a lot of personal time so we have to be very deliberate in how we live our daily lives.  It’s vital to our well-being so that we can provide the care that our dependents rely on.  We have to make sure that our thought lives are healthy.  If we are giving into fear, cognitive distortions, and feelings of helplessness, then it’s up to us to pursue mental health supports so that we can stay healthy.  Is this easy? Hell, no! Is it vital? Hell, yes! There are days when I walk into my therapist’s office and simply declare, “I just need you to check my reality for me.  I think I’ve lost my compass.”  I can take a lot, but, between stupid remarks from strangers, dealing with the insurance company and the Ned Flanders types at the behavioral health company that my insurance company uses to provide coverage for all mental health claims, insensitive remarks from a spouse, paying the bills, normal daily human interactions, and all the pressure that comes with life and what it means to have children with special needs not to mention a parent with mental illness, we need an outside observer to reset us sometimes.  We need someone to hook us up with resources that we don’t have time to track down ourselves.  It’s important.

At heart, I’m an idealist, but I’ve been alive long enough to be a hopeful realist now.  I can’t control other people.  We create our lives even if we live in a pressure cooker.  We still bring a lot of the ingredients to the pot.  I can’t stop well-meaning people from saying insensitive things.  I can only stop myself from saying something equally insensitive in return.  I know that I am not going to be able to stop strangers from saying stupid things to me.  I hear something from someone almost every time I’m out with my daughters.  Admittedly, I’m tempted to create a scene wherein we all grab our stomachs, walk like Quasimodo, cry and moan, and carry boxes of tampons while asking people where the Midol is.  Perhaps Grace could throw herself to the ground and writhe just for good measure.  Doireann could hiss at anyone who attempted to help and shriek, “The light! The light! It burns…”   I could just stand there and cry, “My life….my life…”

I’m sure at that moment an acquaintance will walk by, observe the scene, and nonchalantly quip, “I called it.  Puberty hit and they all went crazy.  Women.  Am I right?”

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Or this…

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Isn’t the media great? Someone thought these were a good idea.

Me? I disagree.  I would like to say something different about girls and women and caregivers because I know that there are male caregivers who are giving it their all, and it takes a special male caregiver to care for a daughter with special needs.  Girls and our bodies must seem foreign and strange at times, but I know that there are fathers and uncles and even older brothers who are helping their loved ones navigate adolescence because they have to.  There is no one else.  They have to be father and mother to a special needs child, and that’s a profoundly difficult role.  Combine being a caregiver with being a caregiver to a child of a different gender, and it gets tricky.  Put it all together with what society at large has to say, and you’ll find that there’s just not a lot of support.  Misogyny is still alive and well.  Shaming girls for their physiology is still “a thing”:

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I’d like to say that a girl, be she neurotypical or not, mentally healthy or not, living on her own or not, feeling well or not, managing her menstrual cycles with aplomb or not, is 100% valuable.

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Caregivers Are Awesome, Too!

And, you know, maybe we’re not mean or nasty or bitchy or unreasonable or unkind or irrational at all.  Maybe all of us are just being true to our generous natures…

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It’s a joke, but true humor starts with a kernel of truth

Maybe it’s time to stop ridiculing girls and women for having bodies that create life, but, at the same time, accept that it’s not romantic in any way.  Enough with the girly commercials already.  It’s gross and messy and nothing like a Massengill commercial.  It smells.  It’s really inconvenient.  We don’t like it.  It hurts, and I’m pretty sure most women couldn’t care less that our cycles match that of the lunar cycle.  So what? When the moon bleeds, cramps, and experiences moodiness on a monthly basis, we’ll start bonding with it.  Let’s just be honest.  Telling the truth often takes away a lot of the mystique as well as the prejudices.

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Maybe it’s time to stop approaching mother and fathers with girls and warning them of the tumultuous years ahead of them because your ex-girlfriend’s daughter was a real bitch when she was on the rag and crazy the rest of the time.  Maybe it’s time to stop saying negative things altogether to strangers with children, be they special needs or not.  If a woman is in pain, how about offering to help? If a father is struggling with his daughter, offer him a smile and a word of encouragement.  Take him out for a beer! If a young woman looks discouraged, encourage her.  If you know a caregiver who has daughters, don’t point your finger at the future and paint a picture of darkness and doom citing blood and rage.  Hell hath no fury like a woman on her period! Hades hath no rage like a schizo during Shark Week! Instead, tell her that you’ll be there for her and her family as long as you’re needed.  Tell her that you love her.  Tell her that you think her children are special and have a lot to offer.  Offer to persevere alongside her.  Offer to be another healthy adult and resource to her children.  Sex education is difficult for some families.  Sometimes it’s easier to talk about periods and sex with an adult outside the immediate family.  Sometimes kids have questions about their own development that they just don’t feel comfortable asking their parents or family members.  Just think of what a powerful ally friends can be! And, of course, the boys in our culture need the same thing!

Shame and empowerment don’t go together.  We’re either all in or not.  A man can’t say in one breath, “I’m pro-woman,” and follow it up with, “Women.  Am I right?”  We either surround ourselves with people who truly value and love girls and women, both neurotypical and not, and instill in them a sense of worth…or we don’t.

Oddly enough, that starts with how we caregivers treat ourselves.  If you are a woman, then your language, what you model around your own femininity, how you talk about other women, and how you treat your body speak volumes to the girls, boys, and men in your life.  Raise a standard, keep it, and then make sure that your standard never comes at anyone else’s expense.  Especially yours.

Let Down Your Hair!

I was finally able to get Eadaoin out of her tower yesterday.  It wasn’t easy.  Normally, had I been talking to a fragile adult, I would not have so direct, but this is my daughter; she’s spiraling down.  Her in-home therapist is going to come today, and I wanted to find out if I could crack her magical thinking veneer.  Could I penetrate her delusions?

She was sitting at the dining room table with Milly.  Milly is 10 years-old.  A lot of people assume that because she’s an Aspie she’ll miss the more nuanced emotional cues.  Sometimes she does, but, more often than not, she surprises me.  Milly was playing a game on the iPad which was providing a distraction for Eadaoin who was watching the screen.  Eadaoin herself mentioned something about her own state of mind, and that was my opening.  I don’t recall how the conversation began, but I wanted to present her with a hypothesis.

An aside: There is a temptation to pathologize behaviors particularly when one already has two children with significant diagnoses.  Another child starts engaging in self-harming behaviors.  They begin acting differently.  One wants to scream, “Not another one!” But, when I was doing my own work way back when, my therapist came up with a hypothesis around my parents’ behavior so that I could stop spinning my wheels and begin to move forward.  Rather than get stuck in the shock and awe that their behavior and mistreatment would produce in me followed up by the question, “What kind of person would do that?”, he taught me to filter their behavior through a singular hypothesis simply because it was more empowering in the moment, I think.  It promoted clearer thinking as well as removed the labels and fears that the DSM Axis II diagnoses would cultivate.  So, the hypothesis that I was to try out where my parents were concerned, specifically my mother, was: “Everything that they do, be it good or bad, kind or cruel, is only done to meet their needs.”  When I applied this hypothesis to every interaction I had with my mother, it was proven to be true.  It could finally become a theory, and it has never proven to be false.  With that in mind, I could make better choices when it came to interacting with her.  The boundaries were easier for me to enforce because I knew that I was dealing with someone who could only make choices around her own needs–never anyone else’s.  The interactions became about boundaries and my own well-being and less about the pathologies at play.  Using a hypothesis approach can sometimes take the fear and anxiety out of dealing with someone else who has a mental health diagnosis.  It is very hard to think clearly if you’re anxious or fearful, and it’s hard to honor the dignity of the person in front of you if you can’t see their humanity through your own fear.

I came up with a very basic hypothesis around Eadaoin’s behavior.  Sure, she might be moving further along the bipolar spectrum and exhibiting more of those traits, hence, my internal scream, “Not another one!”  But, I needed to make a connection with her.  She likes fairy tales so I could engage her using that language.  I don’t think an evil witch or nasty stepmother locked Eadaoin away.  I think she did it all by herself.  Why? Because reality was too painful.  I think that what we see in her now is actually avoidance behavior gone horribly off the rails.

Eadaoin’s original diagnosis in the sixth grade was a generalized anxiety disorder and an add-on PTSD diagnosis.  Eadaoin was born a very sensitive child.  She has always been shy and quiet.  Social anxiety has afflicted her since birth, and little things that might not leave a mark on a less sensitive child seem to deeply affect her.  For example, we were at a petting zoo when Eadaoin was quite little, and she really wanted to feed the baby goats.  I walked her toddler self into the pen with a handful of feed, and the goats mobbed us.  They knocked her to the ground, bleating and nuzzling Eadaoin, looking for the food.  She didn’t make a sound.  Once I was able to remove all the goats, I found her on the ground frozen and pale.  Her eyes were wide, her body stiff.  She was terrified.  After that event, she was terrified of dogs and any animal that could jump on her.  Somehow this fear transferred to chickens as well, and she would scream if she was ever face to face with any kind of live poultry.  Her fear was something like a phobia.  She is still fearful of chickens and dogs at 15 all due to one quick interaction with baby goats.

A few years later, the house next door to us was struck by lightning during a spring thunderstorm and burned to the ground.  We were evacuated from our home during the night, and our house sustained damage as well.  It was a very dramatic event.  The media had shown up.  I was on the news in my pajamas.  Months and months of loud noises in our home after that due to repairs.  Eadaoin became hypervigilant about storms.  She began to compulsively check the weather nightly looking at the forecast for predictions of midnight storms.  She would sleep on the couch.  She would hyperventilate and weep during daytime storms.  This went on for a few years until, finally, I saw that it wasn’t getting better.  We sought help.

Today, she is fine during storms.  The help she received around her PTSD responses around thunder and weather related to storms was effective.  Her social anxiety is better.  She is still anxious, but she doesn’t opt out of social events.  She pushes through the initial surge of anxiety, rides the wave, and settles down eventually enjoying her friends.  So, I know that she does possess resiliency.  I just don’t think that she knows that she does.  I think that she’s forgotten her own strength, and it’s my job to remind her.

So, I presented my hypothesis to Eadaoin yesterday: “I think you’ve constructed a fantasy world wherein you are the princess/victim.  You have a magical connection to the animals in your life because they are the only ones who understand you.  Your sisters are like the wicked stepsisters because they are the source of so much upheaval in your emotional life, and I am something like the Queen because I make you do things that you don’t want to do.  So, you sit up in your tower waiting for someone to come along and rescue you from a life that you perceive to be one of drudgery and despair.  You sing, play, and entertain yourself.  You create fantasies and hope that when you come down from your tower something will be different.  It’s not different.  It’s stressful.  It’s really stressful.  So, you continue to stay in your tower, removed from your life as a non-participant.”

She stared at me visibly uncomfortable.  I explained that, were it me, I would feel weird and vulnerable if someone said something like that me.  I wouldn’t want anyone to see into me on that level.  She blurted out, “Yeah!”  I went on to ask her if I was right.  Was I even close to being right? She looked away from me, blushing.  I told her that it was normal if she felt something like shame.  I wasn’t trying to shame her.  I was trying to understand her.  With understanding comes illumination.  I can’t offer her help if I can’t get into her head space.  I need to view the world from her perspective, and, whether she understood or not, I was once her age.  I could fantasize like nobody’s business.  Even as an adult, there is a temptation to ask Calgon to take me away.  I don’t know where Calgon would take me exactly, but it would be far, far, FAR away from here.  I’m thinking that Eric Bana could be my cabana boy, and I would never have to cook another meal or clean another toilet ever, ever again.  Oh, and all toilet seats would be warm before I sat on them!

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My lady, I just warmed the toilet seat for your delicate…uh…you know.

But, this is reality, and Eric Bana will sadly not be pre-warming the toilet seat for me.  That’s what my husband is for…after he has marinated the atmosphere in his own brand of eau de toilette.  Reality stinks sometimes.  We can’t just up and leave just because it distresses us, and this is what Eadaoin and I talked about.

“How do you feel when you leave your fantasy life and enter into real life?” I asked.

She didn’t answer.  I had to back it up even further.

“Are you able to feel anything at all?” I asked.

“Yes, I feel.  It’s just that sometimes it’s too much,” she admitted.

That’s good.  That’s something.

“You don’t like therapy.  How do you feel in your body when you have to talk to Jane? Do you feel sad or anxious or sick or angry?” I asked.

“I feel anxious.  I feel it in my stomach.  I feel…I feel like I’m in trouble,” she said.

“To you, therapy feels like you’re in trouble?” I reiterated.

“Yeah.  I just want to say what I think she wants me to say so that she’ll go away.”

Gosh, no wonder Eadaoin won’t participate in her process.  To her, in her body, going to therapy is equivalent to being in trouble.

Milly had been quiet the entire time looking detached, but, at this point, she nodded her head and said, “I feel that way, too.  I don’t like therapy.  I always felt like I was in trouble, too.”

I had to stop and think.  How have I handled discipline in the house historically if two of my kids felt that therapy was the same thing as being in trouble? Okay, I could see it.  Whenever they misbehave, I usually ask them how they feel, what they were thinking, and if they know why they made that choice.  That sounds a lot like therapy particularly to a child or teen.  Eadaoin went on to say that she doesn’t want to talk about herself.  She hates sitting in a room talking to another person about herself unless that person is me.  She said that it feels too private.  Milly nodded at that as well.  Doireann says that same thing.  She often says that if I can’t help her solve her problems or if she can’t, then she probably won’t be solving it.  She outright refuses to see a therapist.  This blows my mind.  I have been modeling going to therapy for most of their lives! I don’t have some odd family code around here that we discuss certain things with certain people.  I don’t insist on keeping secrets.  I’m open.  I have boundaries, of course, and I am naturally private, but I’ll engage people and seek treatment for mental health issues.  I’m the first to do it and suggest it.  Where did they learn this?

I had to let it go.  I had to just listen to what was being said in order to understand.  That can be so hard as a mother.  I want to fix! I want to heal.  Sometimes you can’t.  I did ask Eadaoin if there are any other feelings that overwhelm her and cause her to feel triggered.

Sadness.  She has little to no distress tolerance around sadness.  She cannot self-regulate when she begins to feel sad.  It engulfs her, and as soon as she’s swallowed up I notice that self-loathing comes out.  This is when the self-harm emerges as well as a need to destroy things that she likes.  It seems that she feels a sense of unworthiness during those times, and she must destroy the things in her life that represent her worth.  She once tried to give me her laptop in one of those states explaining that she didn’t deserve it.  She was worthless and didn’t deserve good things.  That’s depressive thinking.  As Eadaoin described this, Milly nodded again.  “I feel like that when I get really sad! That’s exactly how I feel! That’s why I scratch myself!”  I just listened, but it was hard.  Milly has struggled her entire life with depressive thinking.  It’s common for kids on the autism spectrum to have anxiety and depression.  To hear them verbalize these feelings was hard to hear.  I see so much value in them.  I love them.  It’s hard to just sit back and be empathetic.

In the end, however, I just nodded.  I thanked them both for their willingness to be present and honest.  I told Eadaoin that I understood.  We had good information now.  It’s not easy to open up.  In fact, for a lot of adults going to therapy feels like one is in trouble as well because many adults don’t go to therapy until their lives are in serious trouble.  Therapists and psychiatrists are not looked upon with love and affection.  I don’t know anyone who says with great anticipation, “I’m seeing my therapist today! YAY!!” Usually, it feels like drudgery and hard work.  Sometimes you feel really anxious.  If you know you have to deal with something very painful, you might even feel profound fear and dread.  When I arrived at the point in my therapeutic process wherein I knew I would have to begin talking about my abduction, I would wake up on the therapy days and wonder if I had a virus–“Maybe I’m ill today.  Maybe my car won’t start today.  Maybe one of the girls will need to go to the ER today.  Maybe a tornado will strike the Cities and prevent me from going.”  Therapy isn’t any easier for adults.  It’s fucking hard.  And, you don’t feel great afterwards.  You usually feel drained.  It doesn’t mean that you didn’t do great work.

When Milly was in play therapy as a tiny girl, we knew she had done deep work if she fell asleep in the car on the way home.  Falling asleep directly after therapy was a sign that her brain had made new neural connections.  It was a hopeful sign.  If she stopped the session midway to go to the bathroom, then we knew we had stumbled onto something really important.  Our bodies are always talking to us.  As a society we have just learned to ignore them.  The anxiety before a therapy session? Normal.  That exhausted feeling afterwards? Excellent.  It means you just worked your ass off.  The need to go home and veg out? Even better.  Your brain is growing new neural connections! You’re experiencing neurogenesis! This is profound stuff, and we need to praise ourselves for entering into such a wonderful process and seeing it through to the end.

This is where we are today.  I have to continue to grow as a parent and figure out where to go now, and Jane, our in-home therapist, will be here at noon.  Yesterday, I told Monday to bring it.  I should have been more specific.

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That’s better.

Monday, bring donuts and coffee.

Locked in The Tower

Last night, the youth pastor from Eadaoin’s youth group called me.  I was on a long-distance call at the time so I ignored the first call.  Five minutes later she called again.  I had a funny feeling so I took the call.  Her voice was strained and a bit high pitched.  She’s stressed and nervous, I thought.  I wonder what she’s calling about.  She tried to be friendly, but the slight vibrato in her voice gave her away; I went for the direct approach.

“What’s going on, Leslie? Why are you calling?”

“Eadaoin posted something on the youth group’s Facebook page, and I felt it best that you know about it.”

I held my breath.

“She asked for our prayers.  She wrote that she’s struggling, and then she posted that she’s cutting.”

Something exploded inside my chest.

“She posted something of this nature on…Facebook?”

“Yes.  I called her immediately to check in with her, and I wanted to call you just to see where your family is and what might be available for Eadaoin.  I know that your family has just been through so much, and I just want to know if there is anything that we can do for you.  I just can’t imagine…”

I don’t cry often.  I don’t even lose it often.  I get migraines.  I have Fibromyalgia.  All the stress that I feel goes directly into my body, but I could not keep up nor cope with the information flying at me in this short phone call.

“Leslie, Eadaoin is in a crisis stabilization program.  She has been removed from public school.  She’s on three different medications.  Aside from putting her in day treatment or in a partial hospitalization program, she’s getting as much help as she can get.  She did not tell her therapist or me that she was cutting.  To be honest, I’m feeling angry right now.  It was not appropriate for her to post that publicly.  Her peers at youth group are not equipped to handle that aside from maybe one.  She made a private matter public, and she is lying to the very people that want to help her.  That exist to help her.”

“I agree.  I did remove the post, and I printed it out because when the kids do things like this we have to keep a record of it.  I feel better knowing she’s got something in place.  Okay.  Well, please call me if you need anything.”

My husband came into the kitchen as I was ending the phone call, and I was crying.  He is like many men in that as soon a woman starts crying he looks terrified.  He awkwardly patted my arm.  I felt like Matt Damon’s character in “30 Rock” who would break down and weep openly while Tina Fey’s emotionally inept character, Liz Lemon, tried to comfort him: “It’s okay.  Don’t…be…cry.”

“What’s going on? What’s wrong?”

I told him.  I also told him that I was not going to handle this situation well  at all because I was too triggered.  I was too angry at Eadaoin, and I knew why.  My mother used to cut.  She would make a big show of her emotional dysregulation, lock herself in her walk-in closet, and then sit in there and cut herself.  My stepfather was not equipped to deal with my mother when she was like this so he always called me up to go in there and talk her down.  I was only a kid myself, but my mother responded to me.  No, it wasn’t right.  It was very, very wrong, but that was the system in my family.  Eventually, she would come out sniffling and snarfling, show me her cuts, and I would tell her not to do that again, get her bandages, and settle her in bed.  It’s really similar to kids who look after their alcoholic parents.  So, when Leslie called me to tell me that Eadaoin posted on Facebook that she was cutting, I was instantly transported back to the other side of my mother’s closet, and I did not want to be there.  I also knew that the intensity of my feelings were going to get in the way of my ability to be empathetic.  I needed my husband to get his ass in the game and help me with Eadaoin.

We went upstairs and found Eadaoin looking like she always does these days.  She was playing “Animal Crossing”.  My husband said, “We got a phone call from Leslie.  We need to talk.”

“I was waiting for this,” Eadaoin sighed.

“May I see your wrists please?” I asked, trying to sound gentle and reasonable, but I’m fairly sure I was seething.  There were cuts.  By the looks of it, they were healing so they were a few days old if not a week.

“Why did you do this?” my husband asked.  Eadaoin shrugged.  I just went for it.

“Did you decide to cut yourself because you feel better afterwards? Like you get some kind of endorphin rush? Or, did you do it because you don’t feel anything and you’re just trying to remind yourself that you are capable of feeling something?” I asked.

“I don’t know,” she replied.  Not helpful.

“Eadaoin, I’m going to be straight with you.  What you did in posting your cutting on Facebook looks like attention-seeking.  Leslie removed your post, and she now has to print it out and put it in a file.  There are consequences for doing that.  So, if you did that because you needed help, we are now up here to provide you with that help.  But, you have to cooperate at least a little bit.  Knowing why you cut is the first step.”

“You called me a nobody,” she said.

“What?” I asked

“You called me a nobody.  That’s why I did it.”

I just stared at my husband.  He stared at me.  “Mom would never call you a nobody.  She would never do that!”

“Yes, you did.  Don’t you remember?” she said quietly looking at me with wide eyes.

I just sat there mentally running through everything I’d ever said.  I knew in my heart that I had never called her a ‘nobody’.  I don’t believe that.  Why would I call her that?

“Give me the context,” I said.

“Well, you were telling me that I shouldn’t compare myself to Doireann because we were each gifted but differently.  I can sculpt, and people even buy what I sculpt.  People buy what I sculpt even though I’m practically a nobody.  See? You called me a nobody,” Eadaoin explained.

I looked at my husband.  He just stared at me in disbelief.  I was about to burst into tears or go bang my head against a wall.

“Eadaoin! Listen to me! A nobody in the sense that you are not famous.  No one knows who you are! Americans pretty much buy anything if a celebrity produces it even if the product is bad.  But your sculptures stand on their own because people buy them even though a ‘nobody’ from Minnesota creates them.  An amateur, teenaged artist creates them and people don’t care.  They are good enough to sell.  That’s what I meant.”

She just sat there.

“Eadaoin! You actually believed that? You believed that I felt that way about you? Why didn’t you ask me?”

Silence.

“You didn’t even consider the context of the statement? You just picked one sentence out of the entire conversation and went with that? Why?”

Not a word.

I can deal with a lot, but this inertia that she’s displaying is maddening.  It’s almost more than I can stand.  In the end, we removed the sharp objects from her room and told her that she needed to come downstairs.  Trust is just about the most fundamental thing in a relationship.  If she’s going to sit up in her room and cut, post inappropriate things to Facebook, and refuse to communicate, then she can do all those things downstairs.

After she had been downstairs for a while, she approached me.  “I cut because I feel better afterwards.  It seems to give me a release.  That’s why I do it.”

Well, there’s some information.  I have seen Eadaoin display very poor distress tolerance and extremely poor emotional regulation.  She cannot tolerate any kind of sadness.  I don’t think she’s always been this way, but as soon as puberty hit she began to struggle in new ways.  My husband has poor distress tolerance as well.  Doireann and I are the only ones, it seems, in the family who can tolerate distress, and I seem to be the Rock of Gibraltar largely because I have to be.  Last night, as soon as 8 PM displayed on all the clocks I put Milly and Grace to bed.  Grace declared, “I’m not tired.”  I just said, “You will be at some point.  Bed.  Now.”

My husband went to the store and bought ice cream because he’s not an emotional eater.  Not one bit.

I ended the night with an email to Eadaoin’s in-home therapist.  I expect a phone call this morning.  It’s Monday.  All I can say at this point is: Aaaw yeah, bring it!

A Mad Hatter’s Tea Party

I think March Madness has struck early here.  My daughters, except for the oldest, have gone mad.  It’s like I’ve walked into the Mad Hatter’s Tea Party! People warned me when I was out and about with four little girls that I was in for tumult and agony, and I just dismissed everyone’s apocalyptic predictions.  We are all so relational and talk about everything around here.  Communication cuts down on a lot of that stereotypical adolescent behavior, but I was not prepared for Eadaoin and her angst last Friday night.  Were those people right?

I took Milly, Grace, and Eadaoin out to Michael’s.  Keeping these girls focused and occupied is very important particularly since we’re practically snowed in.  We’re all going just a wee bit crazy.  Well, I would have had better luck taking a brood of hens out and about because these girls clucked, nagged, bickered, and squabbled more loudly than chickens in a barnyard.  All three of these girls have executive function deficits so walking into Michael’s is something akin to taking them to Pleasure Island crossed with camping on the island of the Lotus-Eaters, but I have experience with this.  I’m patient.  We survived, but I don’t know if the rest of the patrons and employees were unscathed by our presence.  I swear I heard someone sigh as we were exiting.

Milly begged and begged to go to Target, and I had to pick up some essentials anyway.  This is when it all went sideways.  I felt like we had stepped into a Berenstain Bears book:  “Milly Gets The Gimmes!”.   We then hopped into a Nancy Drew novel thereafter: “Eadaoin and The Case of The Missing Empathy”.  A stroll around a metaphorical bookstore is never complete without a trip to the sci-fi/fantasy section: “Zombie Child” (that’s for Grace who looked positively catatonic the whole time).  I’m used to Milly and her over-the-top sensory needs.  She can be a bit like No Face from “Spirited Away” when we go out so I have to remind her to be grateful for what she has.  We have to be thoughtful consumers.  I’m not going to buy her every awesome thing she sees because, let’s face it, it will only be awesome for five seconds.  It’s Eadaoin that had hit a nerve with me.  I was trying to negotiate with Milly about the constant asking for new things, and I had almost reached her.  I could see it on her face.  She has autism.  It can be hard to penetrate her thinking.  She’s also a very sensitive girl so I have to walk a very fine line so that she doesn’t become defensive.  She has a very hard time differentiating between her behavior and who she is.  This is called “splitting”.  In her mind, if she does something “bad”, then she is bad.  This goes for others.  If a friend hurts her feelings, then that friend goes from being all-good to all-bad.  I have to work very hard to use very specific language so that she can learn that we can make poor choices and still be good people.  Well, as I was in the middle of this, Eadaoin comes along and laughs at something I said and then says something really insensitive, and Milly started crying.  I wanted to put my head in my hands.

“Eadaoin, you are an empathetic person.  So, tell me, where did you put your empathy? Have you lost it? Please go find it.  And then, once you’ve found it begin using it again because I need you to bring your whole self to the family.  Not just the lesser parts.”

Yeah, I was angry.  Managing their collective intensity can be very difficult.  I calmed Milly down, but she was now doing the very thing I had hoped she would not.  She had applied all-or-nothing thinking to everything which is what I didn’t want her to do.  So, I’m trying to get us to the check-out aisle while coaching Milly that it’s good to ask for what you need, but you don’t have to ask for every toy that you see.  Eventually, I took us to the in-store Starbuck’s because I was parched from the stress.  Sipping on a cool lime spritzer and hoping to avoid driving in all the snow, I sat down for a moment to collect my thoughts.  Eadaoin said, “I know I haven’t been cooperative.  I know that I’ve been mean to Jane.  I know that I haven’t participated in my therapy.  I just don’t want to go back to high school, but now that I know that I don’t have to go back to that high school maybe I can try.  It’s just that if I don’t go back to high school I won’t go to prom,” she sighed and began to look starry-eyed.

“What?” I asked carefully.

“If I don’t go to high school, then I’ll miss prom.”

This might sound like a sentimental statement to anyone else.  Aaw, look at that.  We conjure up images of John Hughes movies like “Pretty in Pink” in our heads and recall our own high school experiences sweeping it all away in the name of teenaged angst.  That is not, however, what is happening here.  This is magical thinking.  Eadaoin has not been cooperative in any way with Jane, her in-home therapist.  She has refused to come to terms with the reality of her situation.  She was removed from public school due to a paralyzing anxiety disorder, put on Klonopin in addition to her other medications in order to calm her down and increase her functionality as well as to prevent agoraphobia from developing, and admitted into a crisis stabilization program that treats kids in their home environment.  This is serious, but she has chosen denial.  She has refused to admit that her issues might influence her present trajectory, thus, determining her future.  She has refused to come to terms with her learning disorder around math.  She hides in her room playing “Animal Crossing: New Leaf” on her 3DS and bemoans the fact that she has lost her inspiration.  She’s waiting for another mania to hit her so that she can sculpt again.  She won’t listen to anyone.

So, when she looked off into the distance and told me that she would miss her prom if she didn’t go back to high school, I wanted to lose it.  I didn’t, but I wanted to.

“So, the only reason that you should go to high school is for a prom that you may or may not be invited to?”

She looked away.

“What gorgeous, fantasy, animé boy will be inviting you to this prom?”

She blushed.  “Mom! No! No one…”

I rolled my eyes.  “Yeah, that’s not true.  If you’re gonna go to all the trouble to construct a delusion, then go big.  You’ve definitely got a boy in mind.”

She looked visibly uncomfortable now.

“Just how many times have you watched ‘The Breakfast Club’? How many John Hughes movies are you watching up there in your room when you ask for the iPad? I mean, we watched ‘Pretty in Pink’ together last summer, but how many times have you watched it since?”

“A lot.  I like those movies.”

“Yeah, we all did.  There’s a reason everyone in my generation connected with those films, Eadaoin.  His movies tap into our deeper wishes.  They are modern-day fairy tales.”

“I like fairy tales.”

“I know that you do.  I like them, too.  Eadaoin, listen to me.  Fairy tales and movies are not real.  They are stories, and stories are useful because they help us understand ourselves.  They give us a language for talking about things that we often can’t articulate ourselves, but then we have to add our own words.  You can’t steal someone else’s story and make it your own.”

She started crying.  “I guess there’s no happy endings, are there?”

At this point, I had reached my end.  I took everyone to the car, and we started driving.  She was in the front seat weeping.  She was ruminating in self-pity and some sort of despair.

“Eadaoin, listen to me.  You want to live in a fairy tale? Is that what you really want? You love all the old stories? You want to be Cinderella? You want to be Sleeping Beauty? You want to be Rapunzel? That is your right.  You are free to construct a delusion and live from that place for the rest of your life, but please pay attention to the truth of the fairy tales that you love so much.  Every heroine in the fairy tales are rescued or saved by someone else.  No matter what they did, it never affected their circumstances.  Their fate was always resting upon the shoulders of someone else’s ability to show up on their behalf.  If Prince Charming didn’t provide True Love’s kiss, then Sleeping Beauty sleeps forever.  If the knight doesn’t show up to defend and rescue, then these girls are abandoned.  Perhaps you like that idea.  You are not required to do anything.  You can just sit in your room all day long, while away the hours, never develop your character, never develop a good personality, never work hard to succeed at anything, because, in your fairy tale, some gorgeous guy is going to see you across a crowded room and fall in love with you.  He’ll rescue you from your life and take care of you, and you’ll live happily ever after.  Well, darlin’, I am here to tell you that no healthy man worth having would ever want a woman like that.  A healthy, well-adjusted man worth marrying will want a healthy, well-adjusted woman who can take care of herself! Eadaoin, the fairy tales have lied! We rescue ourselves! We collaborate with the Fairy Godmothers, they give us the swords, and we slay the dragons keeping us in the tower.  We climb down ourselves, and then we go out and show other people how to do it!  You want a fairy tale? You’re in one! You’ve got a dragon or two to slay.  You’ve got high drama in your life, and when you lack it you sure know how to create it.  You’re beautiful, and you’ve got your whole life ahead of you.  What’s missing?”

santiago_knight

Let’s just call it ‘fantasy thinking’ because this guy is not real.

She just stared at me.  She sarcastically replied, “I don’t have a sword, do I?”

“What do you think Jane has been trying to give you all these months? She’s trying to equip you, but you just sit on your hands and scoff at her.  You don’t have the tools to defeat your own demons only because you refuse to pick them up and learn how to use them.  Your happiness and ability to heal, at this point, is entirely on you.  We are here to help you.  We are here to collaborate and see to it that you succeed, but you have to come down from your tower and participate.  Or, you can hold onto your delusions.  But if that’s the case, know that you’ll probably spend the rest of your life living in your parents’ basement.  Recall that the princesses who don’t get rescued are lost forever in obscurity.  No one is going to rescue you.  There are no princes.  There are no knights.  There is only you.  We can help you, but you have to want something better for yourself than this.”

She sniffled and fidgeted.  I haven’t seen much of her.  She’s been in her room a lot.  She’s singing the soundtrack to “Frozen” incessantly, driving Doireann completely crazy, but that’s a step in the right direction.  Anna is the first Disney princess to save herself.  If she has to choose a new story to tell herself, that’s a good one to start with.

b3e7_self_rescuing

There’s even a t-shirt. I want one.

A Virtual Hug

Being a caregiver to a child with a neurodegenerative illness is…interesting.  I already have a child with an autism spectrum disorder.  Before Grace was diagnosed Eadaoin was already in therapy for an anxiety disorder brought on by a house fire.  Milly had been getting some kind of intervention since she was three years-old.  ASD and EI go together like PB&J.

In some ways, I was fortunate.  I was accustomed to having children with “issues”.  I mean, come on, I had issues.  My mother has Borderline Personality Disorder so I grew up with an adult with profound mental health needs.  By the time I was fourteen I knew all about residential treatment facilities because my mother spent time in one.  People with BPD often struggle with suicidal ideation.  In Texas in the 80s, if you attempted suicide, they tossed your butt in a residential treatment facility.  No 72-hour lockdown for you! But, people actually got real treatment and a real mental health assessment.  My mother was at the facility for six weeks.  Had she stayed the course in outpatient treatment she might have actually improved.

All this is to say that when Grace began to show signs of mental illness, I wasn’t blindsided.  While a personality disorder and schizophrenia spectrum disorder are in no way the same thing, the outward symptoms often look the same in the beginning.  Emotional intensity, erratic behavior, lability, and displays of anger or even despair and hopelessness are seen in personality disorders (Axis II diagnoses) as well as in mood and thought disorders (Axis I diagnoses).  I was scared to death when I saw these symptoms emerge in Grace, but I wasn’t ill-equipped.  Sometimes your past can actually help you in ways you never thought it could.  I never thought that growing up with a borderline mother would equip me to parent Grace, but it has.  I have a very high distress tolerance for extreme environments with high emotional intensity.  I don’t like it.  In fact, I abhor it, but I know how to navigate environments like this.  This is where I offer encouragement to people who often believe that they don’t have what it takes to offer support to people who are struggling with some form of illness or devastation.  Sometimes it takes one to know one.  What do I mean by that?

Well, oftentimes people mistake poor distress tolerance for empathy.  Let me explain.  I’ve only discussed once in this space that I survived human trafficking.  It was a long time ago.  I don’t define myself by the event, but it was definitely an experience that scarred me.  Sometimes I trip on it.  Sometimes I remember details that were buried.  When this happens I often find myself bingeing on crime procedural television shows particularly “Law and Order:SVU”.  Why? Well, that show deals with sexual crimes.  It recognizes that sexual crimes are wrong.  There are strong reactions around the sexual crimes.  Justice is served to the perpetrators, and the victims are spoken to directly rather than stepped around.  In my experience, justice was not served.  My perp got away.  I need to reorganize my experiences and memories when new details emerge.  I need to be reminded that what happened was not only a crime but it was also an offense.  There are so few witnesses to the suffering I endured when I was in captivity.  When people who know me find out what really happened, their response is often one of shock and discomfort or morbid curiosity.  Trafficking and sexual slavery are so outside of every day experience that people are often not able to overcome their own personal discomfort so they look away as if I am the damaged one.  This is not empathy.  This is poor distress tolerance and fear.  What often follows are judgments because it’s natural to judge what we don’t understand.

For example, my husband does not like to feel emotionally uncomfortable.  Who does? So when he catches me engaging in one of my SVU binges (which is rare these days), he’ll often say something like this: “How can you watch that? It’s so awful.”  That’s a value judgment.  He sees the content of the television show, feels extremely uncomfortable, sees that I’m watching the show and not appearing to feel as uncomfortable as he, and makes a judgment that I lack empathy because I don’t turn it off.  I, in fact, have a great deal of empathy.  I am entering into the show, needing to vicariously experience the justice and appropriate responses to sexual violence that the characters provide.  I’m not trying to avoid discomfort that intense subject matter might provoke in me.  Empathy is putting oneself in someone else’s place in order to practice feeling what that person feels, but empathy is not compassion.  Empathy is the precursor to compassion.  Compassion is an action that follows empathy.  We can feel empathy but not be compassionate if we do not act on our empathy.  In fact, we can be quite selfish and be empathetic at the same time by doing nothing after fully entering into the suffering of another.

So, how does this relate to caregiving? Well, like it or not, there is stigma attached to mental illness in this country.  There’s stigma attached to sex crimes as well.  You’ll seldom hear someone ask the victim of a mugging, “What did you do to make that robber think you wanted to be robbed?” But, almost every rape victim has been asked, “What did you do to make him think you wanted it?” It’s a very odd paradigm, but I think stigmatizing people for having a brain that’s gone haywire is odd as well.  Do we stigmatize diabetics for having a pancreas that has stopped working properly? No, but because a malfunctioning brain often manifests its illness behaviorally, neuropsychiatric and mental illness are all lumped together and called “crazy”.  I’m dumbfounded.  This is the moment, however, when those of us who’ve seen the darker side of life can come alongside those who are weary.  Those of us who have borne the stigmas can speak to those who care for loved ones struggling with them.  Oftentimes, when you go through something very difficult you walk away feeling so damaged that you wonder if you’ll ever be able to contribute to the greater good again.  The world at large has little to say on this point that’s good or positive.  Victims are often ruined, and the mentally ill are viewed as ‘crazy’.  That is not my view nor should it be society’s.

Who do you want fighting for you on your worst day when you’ve had enough? Who do you want sitting on the other side of the door when you’ve locked yourself away from the world? Who do you want looking down at you when you’ve hit the bottom? You want the person who knows how to fight.  You want the person with the key.  You want the person who’s already climbed out of that pit and knows the way out.  You need a person who isn’t afraid to get their hands dirty because their hands are already dirty with their own blood, sweat, and tears.  Why would they ever be offended by yours or your loved one’s? Who is that person?

That person is most likely a victim of something.

Every survivor started out as a victim.  They know darkness.  They won’t be bothered by the darkness or messiness in your world.  That’s what I mean by it takes one to know one.  Every single, painful event that has ever touched our lives can be used to benefit someone else’s.  Society and self-involved, myopic people lacking vision might not look twice at you or me or the “crazies” in the world.  But, when the shit hits the fan, and it will, it’s the lovers of the broken and the broken themselves who often come through in the end.  Our stories do not end with trauma, violence, or a mental illness diagnosis.  Sometimes our stories begin there, and in the midst of the journey we can find the unlikeliest of friendships, meaningful connections, and unexpected adventures, all because we suffered.  That suffering becomes a portal into something much bigger.  Our lives expand.  Our hearts enlarge.  And we are changed.  For good.

So, whoever you are, wherever you are, whoever has been placed in your life today to love and care for, know that everything in your life–be it good, bad, or ugly–has made you uniquely prepared to be that person’s champion.  You have never been defined by any event or act done to you be it big or small.

You are you.  You have value.  And the world needs the goodness and life that you have to offer.  From one caregiver to another…

Shalom.

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