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:


My period made me do it.

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


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?”


Or this…


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”:


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.


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…


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.


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.


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