Supermom

I have an alter-ego. Her name is Supermom.

Supermom wears makeup, which she compulsively checks in the car mirror because any imperfections in her mask might let her real self show. She dresses nicely. Maybe a little bit too nicely for such mundane occasions as grocery shopping and driving her child to therapy. The clothes are from thrift stores and from relatives who didn’t want them anymore, but you’d have to look closely to see the holes.

Supermom might be tired from getting up at 2:30 AM, but she has her shit together. She keeps detailed medical records and educational records. She makes to-do lists. She’s on time to IEP meetings and parent conferences. Usually. She schedules appointments and keeps them.

Supermom is comfortable with social interaction. Mostly. If she’s not, it’s just because she got up at 2:30 AM and she’s really tired …. It’s definitely not because she’s autistic or struggling with paranoia.

Supermom is mentally stable and does not need medication in order to function in day-to-day life.

Supermom does not have any weird political opinions.

Supermom is an advocate. She argues with doctors. She fires therapists. She files formal complaints. She keeps records and paper trails.

Supermom is involved in all of her kid’s therapies. She also implements the therapies at home on a daily basis, due to her endless amounts of energy and patience and lack of personal needs. She makes visual supports and uses them consistently.

When Supermom comes home, she wipes off her war paint, and there’s just me.

I laugh, I cry, I make terrible jokes, I feel overwhelmed, I struggle to keep my eyes open, I get mad, I yell, I apologize, I hug my son, I make silly faces, I stomp like a dinosaur. I put on a TV show and let him eat 3 boxes of yogurt raisins so that I can sit on the couch playing word games online. I rock back and forth and flap my hands. I take my meds. I grapple with self-doubt. I get worked up about politics. I slack off on therapy strategies. And I really do get up at 2:30 AM to give breathing medications and comfort and love.

I’m not sure how many people my Supermom persona actually fools – maybe no one. But I’m aware that I’m expected to try. At least try to pretend to be superhuman. And how my son is treated, the services and supports and medical care he gets, depends on my trying.

So I do. You’re welcome.

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Visibility, accessibility, and judgy people

First of all, let’s get something straight: “invisible” and “physical” are NOT opposites.

A mental or psychiatric disability can be visible. For instance, when you see someone totally disheveled, walking down the street muttering to herself, you probably figure she’s got something going on mentally, like schizophrenia or a really, really, really bad day. A psychiatric disability can also have physical effects, like when you are so depressed you physically cannot get up to go to the bathroom, and brushing half of your hair feels like running a marathon; or the more extreme instance of catatonic depression.

Even more common is for a physical disability to be invisible. Examples: lupus, fibromyalgia, having a feeding tube and/or ostomy bag unless you are wearing a bikini, multiple sclerosis, cystic fibrosis, and many others. Some, though not all, of these impair mobility.

Often, the line between “physical” and “mental/developmental” disability is not at all clear (probably because our brains are part of our bodies? just a wild guess there). How would you categorize a traumatic brain injury? What about Tourette’s, which is neurological but causes physical movements? What about Down Syndrome, which is developmental but often accompanied by problems like heart defects and metabolic problems, and has distinctive (visible) physical features?

The line between “visible” and “invisible” is not clear either. The same disability may be visible at some times, invisible at others. And whether or not it is visible may depend on other people’s knowledge and perceptiveness. Does “visible” mean it must be automatically visible to every sighted person? Does “invisible” mean nobody can tell, even someone very familiar with disabilities?

My son Monkey has a disability, but most people don’t see that when they look at him. There are actually some visible signs: he wears SMOs, for instance, and you can see them over the tops of his shoes, but most people don’t notice or know that they are a form of brace. (Even higher braces – AFOs – are often covered by pants.) He wears an Alert Me band on his wrist with emergency information, but most people don’t register what it is; I’ve had another mom ask me if it was a watch. For that matter, when he wore oxygen full-time, somebody once asked me whether it was because he had allergies. (Yes, because that is a totally normal reason for a young child to be on oxygen ….???)

Basically, to many people, the only “visible” disability is when both your legs have been amputated and you’re being carried on a stretcher while not wearing prosthetics. Using a wheelchair is not enough, because if the person using it stands up a little bit to reach for something on a shelf, these folks will assume that the individual is just using the wheelchair out of laziness, or for attention, rather than because they need it.

Anyway, back to Monkey. He receives physical therapy at school. He has low muscle tone throughout his body, which means that he fatigues more easily than most kids. It also makes it much harder to lift and carry him; imagine trying to hoist a 43 lb bag of flour into a shopping cart. Now imagine that the 43 lb bag of flour has legs and you are trying to stuff those legs into the leg holes of the cart, and the bag of flour is not cooperating … a couple months ago I launched into some rather loud cursing in the checkout line at Target for this reason.

But why was I trying to put Monkey in the shopping cart in the checkout line? Because he was repeatedly attempting to elope. This whole shopping expedition, mind you, had not gone well; he was already dysregulated before we went; but there were some things I had to get. I usually tag-team with my husband, or we all go together on the weekend and I shop while he manages Monkey, but sometimes he works late or goes on business trips and I have to go to the store. This was one of those times.

Now, Monkey is a runner, which means he will suddenly break away from his adult and bolt – out of a building, into traffic. This is especially dangerous in parking lots. He was already attempting to run, so I knew that the only way I could get him through the parking lot along with the groceries without him bolting in front of a car was to have him seated in the cart. Which he is just about too big for, but technically he fits. It has never been easy to put him in these carts, but this particular day I just could. not. do. it. Physically couldn’t manage it. And I started cussing. I lost it. People were staring at me, probably thinking I was an abusive mother, and I don’t blame them.

I thought about this incident last week, when I learned about Caroline Carts. I thought about it again when I saw that our Target actually has one. If you don’t know what a Caroline Cart is, here you go.

The likelihood is pretty high that one of these days, I will end up using one of these carts for Monkey – not on a regular basis, but on expeditions like the one just described. But when I do, I can only hope that the nasty looks and comments are kept to a minimum. Because yes, my son can walk (and run). And no, he is not “visibly” disabled – unless you know what to look for. I dread a store employee or a vigilante coming up to me and telling me what a horrible person I am – the sort of thing that happens to people who don’t “look” disabled who park their cars (legally) in disabled spaces. Even more than that, I dread some mother of a child who is visibly disabled, challenging me. Because while I would be happy to turn over the cart to somebody who needed it more, I’m afraid she might think that I didn’t need it at all, that I was being callous, that I was utterly different from her. And I’m not.

We still use a Britax stroller (again, due to elopement and low muscle tone) even though Monkey is at the upper limit for height and weight. He gets tired and wants to be carried, and we simply can’t carry him any real distance; the stroller keeps him comfortable and safe.

Last Saturday, the three of us enjoyed a stroll around the mall, visited some shops, grabbed snacks and coffee. We got some looks and even a glare as Monkey climbed in and out of his stroller, as we pushed him around. I’m glad that “Too Big for a Stroller” tumblr thing isn’t still going, because someone probably would have snapped a picture of us. Dear people at the mall, my child is not lazy. He’s not spoiled. He is big for his age and has disabilities.

I’ve been unable to get into a building because Monkey was in his stroller and I couldn’t find a wheelchair ramp. I put him in the adaptive swings at the park; they are the only way he is able to swing. If no family bathroom is available, I change him in the accessible stall in a public bathroom, because I need the space. At home, he has adaptive equipment to help him use the toilet.

Physical accessibility matters for us. It affects our daily lives.

But you probably can’t see that.

Please don’t judge.

What do you do when the government hates you (sing to tune of “Drunken Sailor”)

This administration – actually, the entire GOP with few exceptions – has been, and is, conducting a systematic campaign to dismantle protections and supports for people with disabilities. Of course, they have other targets as well – immigrants, people of color, Muslims, LGBTQ. But I’m going to focus on the disability aspect, because it doesn’t get as much attention, and of course, it has a very immediate effect on my life.

Let’s look at a list of changes the administration has made, or attempted to make, specifically targeting disabled people:

  • Block grant or per capita caps on Medicaid (attempted)
  • Allow health insurance to discriminate against/price out of the market people with preexisting conditions (attempted)
  • Destabilize the insurance markets so that only people with preexisting conditions will remain buying full insurance packages, at unaffordable prices (accomplished by executive order)
  • Cut Medicaid by trillions of dollars (in process – budget resolution passed by House and Senate)
  • Cut Medicare (in process – budget resolution passed by House and Senate)
  • Cut SSDI (in process – budget resolution passed by House and Senate)
  • Cut SSI (in process – budget resolution passed by House and Senate)
  • Weaken IDEA by getting rid of established guidelines for implementation (accomplished – rescinding of 72 Dear Colleague letters relating to special education)

Regarding the last one – the rescinded letters are already in the process of disappearing from the department of education’s website. You can find a list here: Dear Colleague Letters  Since last night, many of the links to the letters have become unavailable. There’s a good chance that by the time anyone reads this blog post, they will all be gone.

Remember when the White House page on disabilities mysteriously disappeared?

I wish I could muster up a bitter joke about all of this, but truthfully I see no humor in it. There’s nothing funny about the people in control of the government having it out for you and your child. There’s just a continual ebb and flow of anger, grief, and fear, and a persistent chill.

The White House says this is about trimming away unnecessary bureaucracy. That’s not what it is. I dislike bureaucracy as much as anyone (maybe more than most, since I have to deal with it every day in the medical and school systems), but this is simply a stripping away of protections and supports from a particularly vulnerable population. A population that has fought hard, for decades, to have these protections in the first place.

I can’t get my brain around this level of selfishness, greed, lack of empathy. Sometimes I find myself staring into space asking no one in particular “Why do they hate us so much? Why?”

In reality, they probably don’t even care enough about us to hate us. Hatred expends too much energy.

Signs that you might be parenting a medically complex child

You accidentally put Miralax in your coffee this morning.

Or, you accidentally put Thick-It in your coffee this morning.

You proceeded to drink the Miralax/Thick-It infused coffee because you were either too sleep-deprived to realize what you’d done, or too sleep-deprived to care.

Your energy level ranges from “tired” to “so tired I can’t remember my zip code.”

You send your significant other to pick up your child’s latest prescription, because you are avoiding the pharmacy tech that you caused to cry last week.

You’re on a first-name basis with the person in charge of “incontinence products resupply.”

You make To-Do lists on the discarded backs of Tegaderm bandages.

You are weirdly excited by velcro.

You own a laminator.

Alternatively, you continue to do all your laminating at Office Depot, even though you know it’s more expensive in the long run, because having other people print your stuff is one of your only opportunities for face-to-face human interaction.

All of your mom friends are online.

Your everyday conversation is peppered with acronyms that literally no one understands except therapists, nurses, and your internet mom friends. Like, not even your partner. Some therapists aren’t sure what you’re talking about either.

You spend your less-than-ample spare time educating your elected representatives about how health care actually works.

People get confused when they walk into your home for the first time, because your living room looks so much like an OT gym.

Your child’s OT asks if she can see clients in your living room while her building is being renovated.

Your child’s “pretend doctor” kit is composed of real medical supplies collected from the hospital. (“Hey, wanna put the anesthesia mask on Daniel Tiger? I sure hope he hasn’t eaten in the last 12 hours!”)

All of the ads in your Facebook sidebar are for adaptive strollers and catheters.

You cope with the oddities of your life by making darkly humorous lists about it, and instead of ending with something trite about how precious your child is (which should be everyone’s fundamental underlying assumption because DUH they are your child), you end the list with a little meta commentary on the fact that you made a list about these things. Then you laugh hysterically and take an Ativan.

 

The opioid crisis scares me – but not for the reasons you think.

I’m very concerned about the rhetoric I’ve been hearing around the opioid crisis.

People who use opioids for chronic pain have been talking, for a while already, about doctors suddenly cutting their dose, dropping them as patients, or subjecting them to questioning every time they need a prescription refilled, due to the new guidelines and restrictions. As the opioid crisis is proclaimed to be a national emergency, people who live with disabling pain are being stigmatized as addicts and drug-seekers, even by the medical establishment on which they depend.

While there are some valid questions about whether opioids are the best way to treat chronic pain, this is absolutely the worst way to address that issue. Better ways would include improving access to medical marijuana and to therapies like acupuncture and biofeedback that are proven to reduce some types of chronic pain. But even if we were to do those things, there would still be some people who need opioids, and they shouldn’t be shamed for that.

But it’s not just about chronic pain. It’s also about acute pain – particularly acute pain in people with mental disorders and/or histories of psychiatric care. Like me.

When I read or hear things about doctors prescribing “a week’s or month’s worth” of Percocet after a major operation when a few days’ worth “should” have been “enough” – I think of the aftermath of my c-section. I had a particularly nasty type of c-section after a prolonged and painful labor. I was prescribed two weeks’ worth of Percocet, and I took every precious pill. And I needed every one.

I was also on high-dose ibuprofen, but the Percocet was what made the difference between functioning and not functioning. The Percocet meant I could get in and out of bed, with help, without fainting from pain. The Percocet meant I could walk without feeling like my abdomen was starting to tear open. The Percocet meant I could take a shower without ending up in a sobbing huddle on the floor (although I was still close to that at times). And it meant that I could visit my newborn son in the NICU, hold him, and pump milk for him.

 

I did not become addicted to Percocet. But according to articles like this one, I was highly at risk of doing so, because I have a longstanding mood disorder and I had severe postpartum depression after my c-section.

Furthermore, I currently take a benzodiazepine (low dose, PRN) for acute anxiety, and combining opioids with benzodiazepines increases the likelihood of an overdose.

All of which makes me wonder. In the future – as reaction to the opioid crisis intensifies – if I were to have a serious accident, or another major surgery, would I be denied an opioid medication, because of my history of depression? Would I be under-medicated for pain, because of my responsible use of a prescribed anxiety medication?

I am NOT suggesting that it’s not a good idea to label things or to warn patients about the danger of using both drugs at the same time. Awareness is good. Increased availability and quality of mental health treatment would also be good, not just for people who are already addicted, but for those who are at risk of self-medicating with pain medications because their insurance won’t cover a decent psychiatrist.

You know what else would be good? An economy that doesn’t constantly punish people by making them work longer hours for less pay and less benefits while their living expenses steadily increase, only to see their jobs one day disappear.

A caller brought up the economic aspect of the problem on an NPR program I heard last week. Bertha Madras, one of the five members of Trump’s commission on the opioid crisis, responded that the solution to difficult conditions is to work harder (because that worked for her), and that we have to change “a culture that normalizes chemical coping”.

Which, to me, sounds like a call for more stigma. Let’s stigmatize the poor so that they work harder. Let’s stigmatize addiction more. And how do you deliberately stigmatize “chemical coping” without worsening stigma for people who take psychiatric medicines, especially ones with addictive potential?

What I fear is a world in which a postpartum woman can’t hold her newborn because of poorly controlled pain, and is stigmatized as a drug-seeker when she asks for something more effective, because she has a psychiatric history. And I wish someone would talk about that.

Why poor people have iPhones

This post is dedicated to the asshole doctor who said on the radio this morning that Medicaid patients can afford copays because he sees them using iPhones in the waiting room.

Full disclosure: I don’t have an iPhone. I have a cell phone from the Paleolithic era which has never heard of the internet, takes smeary pictures that may or may not be images of human beings, and has absolutely no clue what to do with an emoticon. This is because I love-hate technology. I do have an iPad, sort of. The iPad, which was given to me by a relative, who bought it used, appears to be one of the first iPads ever made. Half the apps don’t work on it. I use it to entertain my autistic son during doctor’s appointments (it has some of his favorite videos downloaded) and to access the internet during his surgeries/hospital stays. It also serves as our family’s camera. My laptop is only a little bit broken; as long as the screen is at a certain angle, it works just fine.

I have, however, worked alongside other poor people who do have iPhones and I think I may be able to offer some explanation to those who are confused by this phenomenon. (Not that I’m the first person to explain it, but whatever. Obviously it needs to be said over and over.)

First of all, some people buy themselves an iPhone while employed and then lose their job and have to apply for Medicaid. The organization that instantly confiscates iPhones from people who’ve just lost their jobs or otherwise encountered hardship has not yet been invented, although I’m sure someone somewhere is working on it.

Other people, like my former coworkers, still have their jobs; their jobs just don’t pay them much of anything. Often, they are single moms (for a variety of extremely legitimate reasons). Sometimes they’re also supporting grandchildren or extended family. They are putting food on the table (possibly with help from SNAP or WIC), they are paying rent (possibly with help from Section 8), they are (mostly) paying the utilities, but paying for medical care is just beyond them. They are stretched to the financial breaking point. At any given time they are likely to have all of $3 in their checking account – if they have a checking account.

So what are these people doing with iPhones?

For many people, an iPhone serves as a cell phone AND a land line AND a computer AND a camera. Phone and internet are basically essential to maintaining a job in our society, and it’s actually cheaper to have an iPhone than to buy all of those things separately. The iPhone might be a gift or a hand-me-down from a relative, they may have bought it used from a friend, or it might be something that they thought about and decided was a good investment for their family. The iPhone might be the thing that helps them stay awake during 12 hour night shifts, or allows them to communicate via FaceTime with their teenage kids when they have 36 hours of back-to-back shifts at different jobs. (Yes, people do that. It’s insane, it’s probably dangerous, but they do, because they’re trying to survive and take care of their families.) And finally, handing that iPhone to their child might be the thing that saves their sanity on days when they feel utterly, utterly exhausted, and yet they still have to drag their children to an appointment with a shit doctor who is judging them from the moment they step into the waiting room.

Blargh

I have things to say, I just can’t access them past all the rage. So, all I can really say is that with regard to myself, my son, and various other people that I love – I feel that our right to exist, to live, our worth as human beings is under attack by the government right now.

Shocker? Maybe, maybe not. I’ve just never felt it so keenly. I guess that says something about my own privilege.