Diagnoses

Let's take a moment to get real about the professionals trying to help our kids.  The doctors, psychiatrists, nurses, therapists, hospitals, social workers, and counselors who touch my kids lives.  There are very few resources for parents who have kids with mental illness and fewer still for those who have kids with severe mental illness based on childhood trauma.  When you add in the faith-based nature of many organizations out there for adoption, foster care, and childhood mental illness, as a queer family your options become even more limiting.   

I'm going to disclose some information that would be confidential if it weren't ridiculous.  My child has been seen by 4 general physicians, 7 psychiatrists, 9 therapists, 3 psychiatric hospitals, 5 different ERs, 3 social workers, 4 counselors, and innumerable nurses. These numbers are likely underestimated since hospital visits spanning weeks surely have rotating staff.  In total she has been diagnosed with RAD, ODD, ADHD, Anxiety, Depression, Bipolar, Borderline Personality Disorder, Mood Disorder, PTSD, Schizophrenia and Autism.  That's an awful lot of "we don't have a fucking clue."  

As a parent you have an obligation to ensure the health and well being of your child.  Realistically, although their intention is to help, I really haven't met a professional who's been able to significantly help in any way.  In one instance I had a therapist who was honest with me after completing an intensive program she told me two things: 1. It wasn't worth us continuing with her program because the problem was my child had some wiring in her brain get messed up when she was a baby.  Group doesn't really help with that, not really. 2. That she thought we were doing a fantastic job, all things considered.  I'm not sure I agree with #2, but I was grateful for the boost that week.

I still haul my kid to therapy (she osculates between demanding to go "I can't live without" to refusing to go "I'll jump out of the car on the way there"), to a psychiatrist, and, when we need to, an ER or psychiatric hospital.  You have to keep your kid safe, and you have to show schools, social workers, your family and friends that you're trying.  My parents still believe in a concept that I gave up on a long time ago.  They believe that if we just find the right doctor, therapist, medicine combo that the kid will be "fixed".  Sometimes my kid believes this. 

Lean into your computer screen real close, because i'm about to get real honest.  Sometimes our kids can't be fixed.  Sometimes fixing takes decades.  That rewiring may have to be done by parents, teachers, aunts, grandparents, coaches, friends and neighbors a hundred times each before it'll really stick.  How many of us have that many folks interested in our kid?  How many of us can honestly say that many folks stuck around when our kids mental illness exploded in some destructive ugliness?  

We know our kids.  We know what will trigger them, how to keep them calm, how to temper disappointment and curtail the mania.  We know what our kids real Diagnosis is, how to help them, what medicines are likely to work and what aren't.  We know what the manipulations are and why they hadthat nightmare tonight.  We know why March is always a bad month, why birthdays are bittersweet, and what happens if they do sneak in that 6th cookie.  We live our kids every day, no professional can replace that intimate knowledge.  

Yes, we should take our kids to the doctors, therapists, and psychiatrists they need.  No, we shouldn't always take their treatment and diagnosis as the word of God.  No, you shouldn't exhaust yourself running from appointment to appointment.  At the end of the day you are your child's best hope of carving out a fruitful and productive life.  You're there and in it.  If you've got good instincts, trust them.  If you can find professionals that are willing to listen to you- keep them.  Be wary of ceding too much control and power of your life and your child's to folks whose diagnosis and treatment plans look more like a throw of a dart then a careful examination of your perspective. 

Playing to strengths

It took us 3 years to get our youngest child to try an activity without self sabotaging.  To stick with something long enough to get through the initial frustration.  To do something that played to her strength and that she enjoyed enough to do at home, on her own.  We haven't gotten there yet with our eldest.  She still does the self esteem battles and gives up on all extra curricular activities after a quarter or two.

I read a Facebook post the other day that hit the nail on the head, "draw stick figures. sing off key. write bad poems. sew ugly clothes. run slowly. flirt clumsily. play video games on easy.  you do not need to be good at something to enjoy the act.  talent is overrated. do things you like doing.  it's okay to suck."

Think about that for a second.  How many times do you stop yourself from trying something new because you're afraid of sucking or it's not worth your time because you don't have talent for it?  When we're young, really young, you don't have the fear of sucking.  You suck at everything- walking, crawling, talking, reading, video gaming, painting, eating, heck we even suck at pooping.  As a baby hopefully your happy world is all about sucking and getting the googly faces, giggles, and applause from your parents.  We don't really learn to hate being terrible at things until we get older and go to school, or have parents that tell us we're terrible.  The world has two messages for individuals growing up- you suck and it's not okay to suck.  It's an act of bravery for anyone over the age of 8 to try something new.  

This, sadly, seems to be a lesson my kids learned early and hard.  For my eldest, I can't convince her she's good or talented at anything, even when she is.  Think about that... she could be the next Mozart, I could fully believe she is the next Mozart, but she'd quit piano after 3 months because she's decided she sucks.  "It's hard," she says.  It's not so much that it's hard, it's that it takes effort and belief.

My youngest has finally started to learn the lesson.  She's now an accomplished trumpet person (or whatever you call someone who does trumpet).  She stuck with it, even though it was hard, and with lessons and effort has made it to first chair in her band.  No small accomplishment.  This from a girl who curled up in a ball during gymnastics because she messed up a cartwheel.  Let me tell you, all the gymnastic cheerleading in the world couldn't convince her she was good at it.

Effort- work, putting in sweat equity for something you want.

My eldest is so afraid of wanting something and not getting it that she's given up wanting, and by consequence she's given up putting in effort into anything important.

Belief- if there is something most lacking, it's the belief in herself that she can do it.  That a screw up or two doesn't define your total effort, worth, or talent.

I cried at my eldest's choir concert because, for the first time, I saw the belief and effort.  She'd gotten a solo and had executed magnificently.  I had belief that she'd turned a corner.

Within 6 months she'd quit choir.

My youngest, however is still first chair.  She's earned it and it shows.

Coping Skills

A natural part of being human and growing up is developing coping skills. If you experience stress (we all do) and are breathing (hopefully no zombies reading this post) then you have coping skills. When I was a kid I did things for fun: played soccer, video games, and tv. When I was stressed out I'd disappear in a book (I'd do this for fun too), I'd Rollerblade for miles and miles, or sleep a lot. As an adult I'm still prone to reading, or watching tv, sports becomes a big distraction. The hilariousness of cleaning being my #1 coping mechanism is not lost on my sense of irony (A kid normally doesn't interrupt if you're doing the dishes or cooking dinner or raking leaves).

I've noticed a change in therapy over the last couple years as my kid has entered her teenage years. As a kid she would talk about her feelings, participate in art therapy and squeeze silly putty. As a teen she's been given a list of "coping skills" no less then 3 times in the last 6 months (hospital, group, and individual). I almost laughed out loud when her new individual/family therapist wrapped up her first session by handing her a list of 99 coping skills. (my thought: oh good we can put this next to the 150 and 200+! lists we've got in a drawer at home).

Is there something about having the word teen in your age that suddenly makes you able to look at a long list of "what you could be doing instead" and gives you the ability to pick a different choice? In the last 8 months I'd give that a big N-O.

(Side bar- some of my favorites on these lists: Shopping online, playing on your iphone, drawing on yourself, the list goes on... half of which my kid can't do because she doesn't have access to the internet).

So therapists: Stop giving out lists and help my kid practice. Talk to me about how to help my kid practice. Go through the list with the kid, pick some out and practice. Right now the last thing my kid wants is another list... and the last person she wants to "walk her through the choices" is me.

Coping skills in and of themselves are not bad, they're necessary mechanisms of dealing with life. Bad coping skills are all around: my Dr. Pepper addition, someone's food, cigarette, alcohol, drug, crappy behavior, etc. Developing good ones takes time, effort, and a lot more buy in then handing someone a list as they leave the hospital, group session and/or therapy session.

Sex Education

All good parents worry about certain things with their kids.  Drugs, alcohol, sex, and rock and roll (just kidding on that last one).  One of the horrible truths is that my kids are some of those "higher risk" kids everyone talks about on the media and in posh social work journals. 

Our community's public school district has privatized their sexual education.  I think we all know why, in this tumultuous political environment it makes more sense to move that liability to a private company.  However the company our school district choose is an anti-choice, Christian organization (think picket signs with fetuses).  When we asked what they taught about the LGBTQIA the response was "nothing".

This was unacceptable to us.  We've always been very open to our children about relationships, sexual health, rape, consent, STD/STIs, and biological facts.  All within age appropriate language.  Even though we're open to these conversations and have actively pursued them in some instances, we all know that there's just some things you won't ask your parent.

Instead, you might ask the educator in the "anonymous question, feel free to ask anything" stage of the class a fairly innocent, completely relevant question like, "How do gay people have sex?"  If you don't think my child finding her question tossed in the trashcan after the class was damaging to her self esteem and sexual health then you don't know the first thing about children or families.

My kids now sit out of sex ed with the super-religious kids. t makes my heart ache when I think about all the LGBTQIA kids in that school (if the 1 and 10 stat is true that's like 100 or so kids) who are either ignored completely by the curriculum or actively dismissed by the educators. Makes me wish I had more time to advocate for those other kids in the school.

Beyond the LGBTQIA specific implications I find deeply disturbing is that these classes did not speak about consent in regards to sex.  This wasn't brought up at all.  How damaging is that?  How can we ask our culture why so many women get raped when we don't treat consent as worth talking about with our children?  

How we cope:

1. We didn't sign the sex-ed permission slip.  Sorry kids, bad education is worse then no education.

2. We didn't leave it at no education.  We reached out to organizations in our community who might be able to do more inclusive sex ed.  (This is one of the many, many services that Planned Parenthood offers, as well as other healthy, scientifically based educational programs).  Our kids will be attending alternative sex ed... what a weird concept.  We certainly try to education them, but know that that external voice can sometimes make the difference.