Keeping Up Appearances

 A really insightful discussion this week, jumping off of this article, got me thinking. Appearances matter in ways that are more complex than most people stop and take time to consider, but not just the way we present ourselves, other signals like language diction, vocabulary, and body language also cue to people our financial and social status and this matters. 

It shouldn't, but it does.  It matters when we shop. At the grocery store, if I don't dress up from my usual jeans and t-shirt, I always get asked if I am using food stamps. I have even been on the receiving end of snide comments about using food stamps even though I never have.

I have been ignored in shops because I look poor. I was even asked to leave once. I get that I look young. I look poor. I do not look like my place in society- which is an highly educated, white woman in her 30's, married, with a stable 2 income household. I have the privilege of using my appearance to my advantage and I can easily code switch between two worlds. That is the true privilege of social mobility.

This I can deal with. It annoys me. It worries me. Still, it is not life or death.

When does it matter though? It matters to folks who do not have the ability or have even thought about the disadvantage of not being able to move between or present themselves a certain way.

It matters at the hospital.

It matters in the emergency room. It matters in the NICU. It matters when talking to specialists.  I have had a few doctors and nurses who it doesn't matter to, but they are the exception. I make a point of having my iPhone out, dropping references to my job (college professor) and my husband's job and I see them flip the file and double check the section that has that data. I am careful about my grammar. I choose my shoes carefully too.  I bring a binder and any article I reference I keep a copy in there, I also have PDF's on my Google drive and offer to email them if need be. I am sure to cite studies from resources I know that are taken seriously by the medical community, CDC instead of NaturalNews for example. I wear expensive earrings.

Do these things actually matter? In my own experience, yes. If I am rushed or tired and forget this whole production matters, things do not go as well. We don't follow recommendations by our doctors blindly without questioning and many are not used to that. I have to be prepared to meet their level of intellectual code and clearly I can. I have that privilege. What happens to folks who do not? The answer gets more complicated. Part of me fosters a certain kind of fear. Many of the choices we make for our family are the same things that people get their children taken from them for- selective vaccinating, refusing formula for a failure to thrive baby, co-sleeping, spreading out well checks- just a few examples. Somehow I managed to gain the trust of our doctors and caregivers that I am capable of making the decisions without harming my children while a 17 year old, near homeless mother loses her children. I can't help but wonder if my social privilege of education and knowing when certain presentation of things matter because they do actually matter.

It is one thing for these things to make a difference regarding how a grocery clerk and customer treat us, it is a life or death game when seeking medical care.

Another incident sticks out in my mind. We were going over test results with a specialist. He's a great doctor and was very thorough and respectful, willing to work with us. However he ordered a long list of tests just to cover all the bases. One of those tests was the FISH test that diagnosed Isaac with 22q, but there were 15 other tests he ran too. I was fine with that. We followed up. We followed up at his request several times. Each time, blood work and physical exam showed all good things, progress, not more complications. Each visit was $450 out of our pocket. When he asked for another follow up, I explained that to him. I also had concerns about how we were billed for the CAT scan (a $5000 facility fee was tacked on and I wanted to know why and what this was for). He was surprised at the fee, said it had to be a mistake but he was also surprised because he thought we were on Medicaid and Title 19. He said it was not actually necessary for us to come back again and signed off on Isaac's care. 

First, I had the know how to navigate the bitterly cold and horrible waters of hospital billing to ask these questions. I had the privilege of being able to read the bill, the time to spend on hold, and the language and communication skills to make progress. Eventually, the bill was lowered to $1,200 but it took taking to the level of legal action to get them to actually prove to me that the billing was legitimate. That is a huge difference and mistakes and bills like those can push families into financial ruin and poverty.

So let's not just shrug off the value of this privilege. Let's not say it doesn't matter. Instead how about we coach other families and advocate for each other. It is a code that we need to be able to navigate and switch back and forth from if we want the best possible care for our kids. We know that being jerks and yelling and swearing at the medical professionals will knock our actual care and experience down a whole lot, but it is more than attitude that matters.

So I present to you a list of things you can do when you can do them. So much of me, especially the feminist in me, wishes these things didn't matter, but they do and we can use them as tools.

1) Nicer shoes. Start there. Get a special pair just for doctor's appointments. (Good for germ management too, by the way.)
2) Tie your hair back into a bun. This is easy, even if you don't have time to groom your hair. I have a special clip just for this. I can do it in the car at one stop light or in the ER waiting to see the first doc after triage.
3) a light coloured lipstick or gloss. Not bright, not garish, but something.
4) A cardigan or sweater you can pull on over whatever you are wearing. Expensive looking earrings. I keep a pair in my purse just for this. This makes jeans and a T-shirt transform into something just enough classy that it makes the difference.
5) Speak carefully, make eye contact. Do not use contractions like don't, can't, y'all, ain't. Don't get chatty. Don't ramble. Speak carefully and softly. Make them listen to you when you speak and make it count.
6) Take notes. Ask questions. Ask them to repeat things and define words.
7) Ask for copies of everything. Keep it in an organised binder.
8) Stay calm and sweet. This doesn't mean play dumb, it means stay cordial. Check your sarcasm at the door. Losing your temper and storming out needs to be a very last resort. Even if you never ever come back or switch doctors or file a complaint with the state board, causing a scene looks bad on you not them. Last resort only.
9) If you know you don't do this well, get an advocate to go with you. Other special needs moms are fantastic as a resource. Choose someone who can play the game and get taken seriously.
10) Cry in the car. Cry at home. Never cry on the phone or in front of them. Unless your kid just survived a code or some other major thing has happened, then totally break down on the floor, fall to your knees and sob. Crying over being frustrated over billing or rude receptionists needs to wait.

I wish these things didn't matter. I wish they didn't matter more for poor women or families of colour and ethnic background. Clearly dads don't have to wear lipstick. These are things I do because I have experienced better care for my special needs child when I did.

What about you? Do you have any experiences to backup or argue this phenomenon? Tell me you think it is bullshit, tell me you agree. Let's get some dialogue going, y'all.

My Ninja Pirate Princess Fisher Artist Dreamer and Friend....Lily

Happy birthday love. My hopes for you are that nine is as gracious a year as eight has been to you, that you continue to love learning to read, that you always choose dancing with your brother over chores, that flowers bloom in your footsteps,  that any tears you cry you have earned, and that you continue to feel everything deeply and passionately even when it sets the world on fire and crashing around you.

You have rocked my world, made me a mother, challenged me  to be a better mother and a more peaceful person. You have needed protecting and friendship and love and I have tried to give you everything I have and more. You are loved, so loved.

Dear Lily, cheers to age nine. Hold up your apple juice high, and sing to the clouds your beautiful songs! Sweet Lily, I hope to always be your friend and hunt for bugs and mushrooms and faerie folk with you. I will be your taste tester in the kitchen, your artist in training partner, your travel companion, and your mother, always.

Nine was a big year for me and I hope that your ninth year is just as full of joy as only you can make it. Goodbye eight. We'll miss you. Hello nine, let me show you the ropes! Catch your laughter on the summer breezes and hide it in your pocket for the colder months. Save some to mix in your hot cocoa and let the warmth from joy tickle you to your toes and spill out all over the table and your shirt, creating more smiles and giggles as it does.

The world is only getting scarier. You will understand more of it this year and I know that your big and passionate heart will be frightened and sad by what you learn. I am sorry that our world is like that. I can only hope that children like you, grow up to be people who work on healing the pain and chaos that all who came before you have left as legacy.

Dear Lily, I love you. Mama.

Something No One is Talking About, But We Need To

There is no delicate way to write this. There is no flowing prose to soften this blow, to make everyone feel better about this not talked about subject. Yet, this is what has been flowing around my raw and messed up head lately.

We go to a lot of doctors appointments. We have a lot of blood draws done. Two of my children have bad teeth so they end up having painful things done at the dentist. These experiences are what brought me to these thoughts.

I also have to state that the folks (with the exception of the evil horrible no good dentist) are all good people who are not trying to hurt my children, they are trying to help. No. What I am going to talk about is the system we all consider normal, necessary, and the way things are done. I am proposing that we change that, but honestly I have no idea where to even start.

I began this series of thought when discussing birth trauma with a friend, many things about the way birth is handled in modern hospitals is traumatic to women, they feel powerless, and are even abused physically though it is for the safety and health of both them and the baby. Many women are outright violated by strangers and it is accepted because that's how OB medicine works. Many birth activists are creating change in this area, both in process and in empowering women with information.

Great! Yay! Cool. Progress.

I was holding down Isaac for his yearly blood draw, he was telling me that he is a brave boy, like a bear! and I was cooing that it would be over soon, he is a good boy, I know it hurts, but it will let us know if he is still healthy, I love him, and his sisters held his hand and sang to him while he was restrained by us and in pain.

What are we doing to special needs and medical needs children? I know what I described sounds like a loving mother, helping her son through a routine and necessary procedure so let me keep going.

What about this? My 8 year old had to have a tooth extracted and the dentist decided to pull three instead, without telling us, and knowing that the pain meds were not working. He said to her, be still, be a good girl, it will hurt you if you are not still. She said that she would bite him, and she did. He withheld the prize at the end, said a few nasty things to her. It was awful. Yes, I filed a report. Let's look at the situation though, without jackass dentist being a jackass. Young child held down, in pain, pain being inflicted, being bribed with  toys and rewards, told be a good girl.

Are we grooming our special needs children to be victims? Trust me, I am not victim blaming here, I do no believe that victims are at all at fault to the evils inflicted on them, NOT EVEN A LITTLE BIT. However, we also as a culture acknowledge that predators of a certain kind will condition and court their child victims. What I am asking is, are we doing that? Are we setting our children up to submit to pain and terror by people in medical authority because it is medically necessary and does the way that we do that set them up, condition their personalities to more easily submit to others in authority who might abuse them?

Abuse of special needs adults is something we talk about as a culture, and physical abuse of special needs children has made the news too with the "quiet rooms" and deadly restraint incidences.... but that's not what I am thinking of this time.

Here's what is going to be hard to talk about and hard to wrap our minds around- I am talking about sexual exploitation and abuse. Too often, when I am holding my children for medical procedures, the verbal comfort from nurses and even me sounds exactly like what rapists say to their victims. It will be over soon. I know it hurts, but it is for your own good. You want to be healthy, right? I love you.

When the baby grows into a toddler and young child, when they know enough about what is happening to be afraid? The nurses at one visit were upset that I told my daughter that the shots would hurt and that I was sorry. They told me it is better not to let her know and just go and do it. We tried that once and she had nightmares for weeks. A sneak attack is wrong, so wrong, but completely excepted!

Young children have the intelligence to know and fear pain, but not to process the whole it will be over soon, for the greater good internal argument. We are violating their bodies with exams, shots, blood draws, tooth extraction, and a lot of other things. Medically necessary is a concept that adults understand and children do not, so we victimise them over and over again, holding their hands and cooing at them that it will be ok, that we love them.

I don't know how to change this. I read about a drug some doctors give children called Versed that will eliminate their memory of the event. Immediately I thought it was like a date rape drug and was shaken by the idea, but the more I consider it, I certainly would prefer this to the nightmares and anxiety, if the drug works like they think it does.

Lily has asked me to never take her to a male dentist again. I don't know where she got the idea that a female dentist would be better, but that was her gut reaction. She fights back. She can tell me her concerns and fears and I help her make choices and feel empowered. Isaac is non-verbal. Many special needs children have communication issues. What about them? What are they feeling? How can we empower them through painful and invasive exams and make sure they fully understand good touch and bad touch? Will someone evil take advantage of their vulnerability and inability to communicate?

The painful answer is that we can't. Not for all of them. Our words and actions and methods for how these procedures, routine or major, has to change. We have to consider the whole person that they are or we'll be fixing their bodies but breaking them on the inside. PSTD and anxiety is already a major issue with special needs children. If we do not consider the full ramification of this, it will eventually be just another headline we don't talk about.

Hot Hot Hot

This year we had so many peppers grow in our garden and then a friend lent me her dehydrator.  This is the result!