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.

My Dream of Having Kids

When I imagined starting a family, I'd replaced biological kids with adoptive kids.  That was it.  In my head we did all the things any family would do, fought, loved, had dinner, played soccer.  My family was my family.  We'd play board games and go camping, have holidays with my family.
 

The real me knew it was a bit more complicated then this.  In the state I lived in there are training and class requirements to adopt children, there was also the reading I did, and the "what type of children are you interested in" form.  This is a form my partner at the time and I spent a lot of heartache and time over.  You had a long list of physical, mental and emotional problems a child could have and checked off the ones that you were willing/not willing to consider.
 

For instance, I thought I could handle a child who was blind or deaf or had a birth defect, but not one who needed continuous serious medical care.  It was important to be honest.  Which was hard, as I've said before- rarely do assholes want to adopt.  You fill out this form trying to be honest yet feeling every "no" as a rejection to a potential child.
 

It's been 6 years since I filled out that form, and I still remember many of the "nos".  Hepatitis was a no, since I didn't feel like we would be careful enough to ensure the safety of ourselves and our potential other children (we wanted to adopt more then one).  HIV/AIDS was a no for the same reason, although this felt like a betrayal to my community.  Spina Bifida was a no since we weren't sure we were prepared to handle the sort of care needed.  Even now, these are hard to admit.  Each and every one of these children deserves a loving home.  It was important, the social worker told us, however to be as honest as you could about what you can handle and can't.
 

Another 'no' was Fetal Alcohol Syndrome (FAS), for some reason (I don't remember now) this one was called out as a non-starter to us at the time.  The other mental illness neither one of us were willing to take on was Reactive Attachment Disorder (RAD), from the stories we'd read these were the kids that were really, really challenging.
 

I laugh now.  The truth is the hardest part about adopting kids was realigning my dream about what having a family and being a parent would be like and what it actually was.  Neither of my kids had much interest in soccer- we spent one season watching a dandelion picker.  Reading to my children every night did not instill in them the love of reading I'd hoped it would, at least not yet.  We've only attempted to camp a couple times, which were an exhausted practice in my stubbornness to 'have a good time', and don't get me started about board games, that will be blog post in and of it's self.
 

I imagine all parents have this.  Biologically created families come home with these bundles of joy who puke and poop non-stop.  In the genetic jackpot there are certainly families who have children with a variety of challenges.  Bio-families don't get to fill out a checklist of 'nos'.  
 

I spent the first two to three years as a parent realigning my image of what I thought my family would/should be to what it was.  It's not like I had this iron image of my kids and their personalities.  I expected them to be different then me, to like cheerleading and olives, to be into dolls and gymnastics.  I was waiting for them to be unexpectedly awesome in ways I never imagined (which has happened).
 

The surprise, and struggle, isn't from my kid not liking soccer.  It's because I realized early on that I could never be their coach.  I couldn't be a significant teacher.  My role was parent, and that role for them was so damaged from their early life that I simply couldn't be anything else.  I tried to be coach, teacher, therapist, mentor, and every single time our damaged relationship of parent got in the way.  I wanted to tackle my child's problems reading head on and ended up running straight into a brick wall as my child confused my reading help with parental disapproval.  I tried to be an assistant coach and ended up completely embarrassed as my kid continuously and blatantly sassed me in front of the team as she might at home, to melt down when I cracked down on her in front of the team.  I have spent so much time caring for these children, setting boundaries and rules and structure, and being the parent that they need.  I've had to come to grips that their most significant academic, physical, and social leaps will happen because someone else, a teacher, coach or friend, connected to them on a level I can't.  My job is parent, to prepare the earth for planting.  To lay the foundation and safety to allow the growth.  Or at least that's been my role and is my role in the foreseeable future. 

How to cope:
 

I remind myself that I'm not in this for me, I'm in it for them.  I need to be the person in their life that they need right now.  Some day, in the very distant future, I'll have grandkids and will be their soccer coach.
 

What also helps is remembering that biological families don't always get what they expect either.  This is something everyone has to go through to some extent, as with many things with my kids it's a normal behavior/thought/moment taken to a more extreme level then most folks experience.

Christmas Spirit

So I wanted to share a quick "proud of my kids" moment.  My wife and I try to help out a family or two over the holiday.  On lazy years this is grabbing a couple items off a "need" tree at a local charity, or helping one of the "neediest" families in the area.  There is a family I've helped for years, and we always send them a package.
 

This year has been a year of struggle for many people I know.  I feel very fortunate for, financially, how we've fared.  It's one of my values that I have an obligation to help my fellow humanity.  So, we broached the topic to the kids...
 

Moms: Alright, you know how we help someone out every year?  Well there's this lady at my work.
 

kids: Lady X (obviously not her name), with the three kids?
 

Moms: Um... no, actually Lady Y with her two kids.
 

kids: Can we help them both?
 

It was one of those moments where you realize that some of your values did actually sink in.  The kids went through their toys and stuff and donated some to the kids in need.  In fact, our eldest (the one who gives us the most trouble at the moment) asked if she could donate half of her xmas money (she gets a bit between her adoptive and biological families) to help out these families.
 

Both of us cried and the kids thought we were crazy.

Get used to being an Asshole

When I think about a group of folks who are willing to take in children who do not have homes, the first character trait I think of is not "asshole".  In fact, I'd say the exact opposite.  However the truth of the matter is that for RAD kids, you will be painted as an asshole to almost everyone... and (maybe it's my naïve that finds this surprising) most folks will believe them.
 

Everything is always a BIG DEAL.  In my previous post I mentioned ice cream and braids.  These are a big deal.  Like not, I'm going to be jealous and cry big deals.  Like I'm going to put a giant hole in your wall BIG DEALS.  This extends out to almost every facet of your life.  Everything is worth arguing about.  It's not about the thing, the privilege, the rule... it's about who's in charge.  There is never an opportunity to challenge "who's in charge" that goes untested.  Here's the thing- it doesn't necessarily get better.  What the books, the pre-adoptive 'training', the sub-par medical and psychological professionals trying to help you don't tell you (and sometimes don't realize) is that either a) your child is just going to be like this for the rest of their life with you and/or b) the steps you'd need to take as a parent to get your child to a different place are beyond your ability.  What this feels like, coming from your kid, the visceral feeling is "you are an asshole mom" in a 100 different ways, daily (sometimes hourly, or minutely).

I once read a book aimed at RAD parents that summed up their solution to dealing with RAD kids as: quit your job and have one parent devote their life to the child- no other children, no pets, no nannies... just 1:1 parent/child-ing for 4-8 years.  Let's think about that for a moment.  For how many people is this a realistic choice?
 

Most parents, who survive the first year- there are many that don't, end up developing a rigid, structured world for their child.  We create RULES that govern everything from when TV can be watched to how phones can be used to when desert can be expected and how quickly it is expected to buckle your seat belt in the car.  This won't prevent the arguments over the actions expected.  But it will give you something to point at... when you catch the kid in a lie, or dole out a consequence.  It also mitigates the "But I didn't know" arguments. (Funny aside... did you know that it's impossible to tell that giving your teacher the bird will get you suspended until you try it?  "I didn't know...").
 

Here's the other side to being an asshole.  Not only will your child tell you such, but most of the adults who see you interact with your child will think (and say so) too.  I'm talking about Aunt Tamika, who only sees you once a year... your own Mother who can't understand where you learned to treat children that way... the woman at the grocery store who doesn't get why you tell your kid if they ask for gum one more time there's no TV this weekend.  We'll have further discussion on the isolation you experience, but for now I just want to make the point that you will really, really feel like you may in fact be an asshole.

How to cope:

This one is hard for me.  One of the things that helps the most is to realize it's not me.  I do this by reading other blogs, talking to other parents who are struggling with their children's mental health, and generally ignoring all the 'how to parent' books that offered seemingly easy solutions (that one took me a while). 

There's also this need to develop a thick skin without becoming insensitive and numb.  There's this painful period where your family and friends from your previous un-kid life get weeded out.  You can't exist in a bubble, but you've got to be careful about who gets invited in- whose opinion you care about.