Category: special needs parenting

Oh, s*#t

The speech therapist sent over some new communication cards a couple of weeks ago. They are laminated sheets that contain about a dozen icons that our family can use to have better, more focused conversations with my son. Without them, there’s often whining, interruptions and repetition. With these cards, we still do all those things, but we also do a little bit more chatting about the day and our plans for the weekend, specifically whether or not we will eat tacos on Friday night. (Spoiler alert: We will.)

fredagsmys
Communication card for the weekly Swedish phenomenon Cozy Fridays, aka Fredagsmys

This particular pack of cards is aimed at older kids, now that my son is well into his teen years.skit också You can probably imagine my surprise when I see that on the cards is a pictogram for a swear word. “Oh, shit” shows a generic-ish person with a palm to the forehead. Useful for many contexts, but not the kind of language I promote with my kids.

I easily forget that my son is getting older, mostly because he’s physically small but also because he needs help with things that kids his age have figured out how to do long ago. But that doesn’t mean he’s a child in every way. Because he needs my help, it’s also easy to believe that I should be allowed to make choices about things that parents normally wouldn’t–his clothes, his music, his activities, and even his language. People with disabilities have been pointing out how society infantalizes them for decades. I do not want to be that parent, so we laugh and practice saying it together.

There are so many areas where I’m going to be pushed out of my comfort zone. Swearing, friends, alcohol, sex. His body is changing, his needs are changing. He’s getting older, and so am I. Oh, shit.

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Turn your face to the sun

flowers plant spring macro
Photo by Pixabay on Pexels.com

”Like Spring secretly at work within the heart of Winter,
Below the surface of our lives
Huge changes are in fermentation.
We never suspect a thing.
Then when the grip of some
long-enduring winter mentality
begins to loosen,
we find ourselves
vulnerable
to a flourish
of possibility
and we are suddenly negotiating
the challenges
of a threshold…”

Thresholds, John O Donahue

The snowdrops came up this weekend. Their reappearance every year brings a shock of hope so unexpected and intense it’s almost violent. It only took a few hours of sunlight on a warm brick wall and there they were.

It’s easy to forget, when things are hard, that there are forces waiting just below the surface. Dormant, gathering strength, looking for their moment. Not just in nature. Remember the snowdrops, Idealists, and turn your face to the sun.

 

 

The tired tropes of special needs parenting

If you listen to or read pop culture reviews, you’ve probably stumbled upon a conversation about tropes, which are basically plot devices, themes or recurring character types. It’s impossible to tell a trope-free story; even our most basic story-telling devices are tropes, like having a beginning, middle and end, or the classic struggle between good and evil. Without them, stories are just random strings of images.storytropesbingo

When overused, tropes become clichés (Will they or won’t they?) or even offensive (“What do we do now?”). And sometimes, there are just so many of them going on at once that the result is referred to as a trope salad. Exploring tropes is fun, and entire websites and wikis are devoted to cataloging them.

When disability gets represented in life and culture, plenty of tired tropes surface. My Twitter feed was lit up last month with a debate around professional conferences that feature inspiring, overachieving people with disabilities, aka supercrips, a pop culture staple. Lately I’ve been irked by a reality TV home makeover show for a “needy families” willing to share their desperation and tears on cue so that they can be rescued by “angels” (no joke) and we viewers can feel blessed and generous. Representing disability in pop culture can be a bit of a landmine and I appreciate it when writers call out disability clichés.

As a special needs parent, my antennae are always up for tropes about parents like me. One of my first blog posts was about my love/hate relationship with Mamma Bear. I’m sure that I could find plenty of examples for clichés that I’ll just call Disengaged Dad, Super Mom, the Invisible Sibling, the Parents In Denial, and the Pity Family.

If we suddenly become special needs parents and we don’t have any other role models, there’s a risk that we actually adopt these personas. I personally auditioned for several of those roles. Sometimes I even got the part for a season or more. Award worthy performances.

Luckily, I also met plenty of parents who showed me that I didn’t need to play a cliché, because life was too complex and interesting. Parents who were strong and vulnerable. Who had their crap together most of the time, but didn’t apologize when they lost it once in a while. Who were incredibly creative problem solvers, except for that one area that was a total blind spot. These folks defy stereotyping and two-dimensionality. Just like all parents. Just like all people. Just like everyone, we contain multitudes.

Have you cast yourself in a role that was just too flat for real life? Are you doing it now? Do you know someone who is defying typecasting? How might you allow yourself to be a little bit more complex?

 

 

Passages

I opened a book last week and a bookmark slipped out onto the floor. It was a freebie from a favorite bookstore from my old life, back when I lived on the other side of the ocean. I loved that bookstore, with its coffee counter and author events and the way it always had exactly the book I needed even when it didn’t have the book I wanted.

The bookmark skidded across the floor, a little wave hello from another time, another me, a reminder that of the actual physical things that I packed and carried with me from that life, fewer and fewer remain. Clothes have become too small, plates have broken, toys have become boring. The things have stopped fulfilling their purpose and have given way to new things. There’s nothing to do but let them go. A spot somewhere between my heart and my throat clenched in missing and longing.

Recently I realized I’ve spent nearly every weekend for the past five years frustrated that I can’t seem to get myself and the kids out of the house like we did when we lived in Boston. Back then, being home on the weekends was a real struggle; our son’s disabilities made it hard for him to sit with anything for more than a couple of minutes, cycling through toys and activities at a pace that I couldn’t keep up with. My own inability to sit with that fact had me crawling the walls. Weekends became about getting up and getting out. Picnics, walks, bike rides, car rides to ice cream stands miles away, zoos…we were great at getting out.

These days, we don’t get out like we did then. Our house and life work differently and being at home works more often. But somewhere along the way I forgot that we went out because we had to, and when we didn’t anymore I started blaming myself that I wasn’t doing a good job parenting.

Like stuff, activities, habits, rituals and routines stop being useful. I forget that sometimes and cling to doing things the way I used to do them or having the things I used to have. It’s gotten me thinking about how what other worn out expectations and habits I’m holding onto, how much energy I’m pouring in to maintaining our old way of life and blaming myself when I don’t. Some things are worth the effort, but some things are no longer fit for purpose. I’m going to think about that for a while, and am curious to hear what you cling to or have let go of, too.

 

 

Hello, hello

It’s been so long since I shared any writing here that I need to say hi before diving into my own stuff. Hello. How are you? What’ve you been up to? Are you taking care of yourself?

Speaking of hello

Last week I took my son to a pre-surgery appointment at the hospital. We hadn’t even reached the main lobby and I was feeling anxious and stressed about the upcoming surgery, and frustrated that I had to take him out of school for a visit that we probably could do over the phone. A cloud of general dread was also hanging around mostly because of lingering emotions hanging around from the six weeks we had spent there last year, triggered by the smell of the parking garage and the sound of the music in the elevator hall. Let’s just say I was not my best self.

And then something happened. Sitting on stool off to the side behind the front desk, a janitor was chatting with the receptionist. As we approached, he looked at my son and greeted him by name. “Hey buddy, how are you doing?” I hesitated for a second and the man looked at me and said, “I remember him from when he was here before.” It was really remarkable.

While it’s really impressive that he remembered us, I thought even more about the fact that he said hello at all, and how that made me feel. Saying hello can seem like a token transaction, but really it’s a way to let others know that we see them. My shoulders loosened. I was reminded of the importance of kindness.

Hälsa means both health and say hello

There is a beautiful word in Swedish — hälsa. As a verb, it means to say hello or to greet. As a noun, it means health. The words are connected etymologically from the word hel, which means whole and even perhaps from helig or holy, sacred. To say hello is to wish someone wholeness and wellness. How wonderful to be reminded that all these words are connected! A simple hi can say much more than we think.

Bringing back hello to healthcare — The 10/5 Rule

I remember reading about hospitals in the US launching campaigns to bring back saying hello in health care environments. Inspired by the service industry, they began adopting the 10/5 Rule, or the Hospitality Principle, to help instruct their staff on how to provide courteous service through greeting. The 10/5 basically recommends that when within 10 feet (3 meters) of a guest or patient, staff should smile and make eye contact; when within 5 feet (1.5 meters), staff should say hello. This also means that staff should stop their conversation with each other in preparation to greet.

What does this mean for health care?

The 10/5 Rule, with its roots in companies like Walmart and Disney, can seem like an American attempt to commodify courtesy or institute robotic friendliness. At the same time, I know that my experience as a caregiver and patient matters. When I’m treated well, I also treat others well, which must be better for staff in the long run.

So much of what we’re doing in hospitals these days when it comes to improvement is really expensive. New buildings, new IT systems, more staff. As a parent and patient, I know what feeling invisible, afraid and alone feel like, and sometimes I think healthcare is missing out when it focuses on the big ticket items and skips over delivering common kindness.

Personally this has gotten me very curious about how I say hello, and what it means to those around me. I’m going to be experimenting with how I can sincerely show the people around me that I see them and care about them. I’ll keep you posted. Until then, bye!

Other resources for “Say hello” campaigns

Implementing the 10/5 Rule in Nursing homes

A video from Children’s Hospital of Pittsburgh

Here’s a very enthusiastic training video from ASMMC Medical Center

Reflections from Tufts University professor on the power of saying hello from Psychology Today

Amy Rees Anderson shares background on the evidence of saying hello from Forbes magazine.

The new year as a threshold

Every moment offers a new beginning, but there is something special about the collective transition from one calendar year to the next.

It is and always has been a struggle for me not to get too caught up in new beginnings like this, to not be spellbound in the illusion that simply resolving to change will bring change, or that most of the mundane changes I desire, will bring lasting happiness.

And yet. A new beginning like a new year, if I use it skillfully—it can be an opportunity. It is a threshold at which I can pause and listen, receive instruction and energy, and set an intention. I can investigate and appreciate what has led me to this moment, and decide what can be let go of.

Last year I participated in a program that did in fact harness the energy that exists for me in the beginning and the ending of a calendar year, called One Little Word. Created by Ali Edwards, it involves choosing a word to focus on for the year, and as she says, “to live with, investigate, to write about, to craft with, and to reflect upon.”

My word for 2017 was Soul, and using monthly creative prompts from Ali I played with the word in all sorts of ways—set intentions, created a vision board, put together a play list, and a bunch of other fun things.

I’ll be doing it again this year, and my word will be Listen. As in listening to my inner voice, to others, and ultimately, listening to what can be be called my higher power, God or the Universe. But really, there were hundreds of words that are worthy of choosing—the gift is picking one and sticking with it while it works its magic.

One Little Word allowed me to shift away from seeing the new year as a pristine piece of white paper which I should resolve not to ruin, to instead seeing it as the space in which I can play and explore with intention, curiosity and imperfection.

If that appeals to you in any way, check out the One Little Word program for 2018. It would be fun to connect around it.

And just to clarify, I’m not an affiliate and don’t receive any money from Ali. As part of the class you can purchase some cool scrapbook/kit-making merchandise, but I used a sketchbook and my own crafty supplies.

 

Say my name, say my name

Having just hit the four-year mark of living “far, far away,” I’ve been wrestling with my American-ness lately. Not in terms of politics or current affairs, just generally about where my American identity appears on the Venn diagram of me.

Culture is easiest to see when you step outside of it. Having a culture is what gives that exciting electricity when looking out the window of a cab on the way from the airport in a new place. Sometimes stepping out of one’s culture reveals that deeply held truths are actually just opinions. I see this in the flares of annoyance I feel around unnecessarily time-consuming recycling systems (my kingdom for a single-stream receptacle with curbside pick-up!) or the unspoken social conventions when meeting someone in a public doorway (clearly it makes sense to hold the door…or maybe not).

I’ve made some accommodations to my new homeland. I’ve set my calendar app to start my week on Mondays. I celebrate Easter Eve. (Don’t ask why, because I don’t know.) I make stronger coffee, and I try to drink it sitting down. It just happened.

Other concessions are harder to make. I still prefer to American books, podcasts, TV and movies. It’s not just a lazy language thing, but the settings and the references. It’s about seeing the world with an American gaze.

There’s another aspect of cultural identity I’ve been thinking about lately: its purpose of providing contours to my otherwise diffuse psyche, like personality eyeliner. A lifetime of fourth of July sparklers, yellow school busses and two-for-Tuesday rock blocks has resulted in a very particular person who is me. If I let this container go, will I still be me? Of course I will, but will I really?

But what happens when cultural identity is not so much a vase for our bouquet of personal quirks, but more of a box, closing us off? Can it be made permeable? I think so. With little conscious effort, the box is becoming more of a butterfly net.

Take my name, for instance, for which I have most definitely not nailed down a consistent pronunciation. Some days I introduce myself and pronounce its ‘r’ with such an American accent that I risk swallowing my tongue. Other days I’m happy to let it softly tap the roof of my mouth, behind my front teeth, in the way that my new language wants it to be.

Some days the container is more permeable than others. I feel slightly more invisible, more diluted, but also more connected.

I have other containers. Woman. Mother, even Special Needs Mother. Employee. Nearing 50. Immigrant. Each one has its own comforts, its own limitations.

I’d be really curious to hear from others whose identities have become more like butterfly nets. What made you aware of your containers? Did you find parts of you that transcend labels? What are they like?

Overcoming paralysis with a single step

In a recent stress dream, I sat in an airport coffee shop knowing I was supposed to board a plane, but with no recollection of when the it was going to take off or from which gate. Despite being surrounded by information counters and departure displays, I just sat and sat, paralyzed and ashamed, with no sense that there was anything I could do.

Of course, these stress dreams usually occur for a reason.  My son has been getting hurt lately due to an unusual symptom that makes him fall down at sudden noises, and I’ve known for a while that it’s time to do something about it if I want to keep him safe. But the anecdotes I’ve heard from other parents who have kids with this rare syndrome have given me the impression that there aren’t really any good solutions, and each one caused its own negative feeling. The options appeared to me to be as follows: have him start using a wheelchair (makes me sad to think of limiting his mobility on purpose), start on heavy-duty personality-deadening anti-psychotic medication (ugh!), finding a helmet or brace or full body bubble wrap (makes me worry that he will incur even more stares than normal), or collaborating with industry for new applications for existing technology for sound-blocking headphones (makes me feel exhausted just thinking about it), etc, etc. Or I could just doing what I’m doing now, holding my son’s hand whenever he is standing up, even in the house (which is making me feel strung out). So I have been doing nothing, just sitting at the airport waiting to miss the plane.

This morning my husband and I had a quick huddle: I would ask the parent community of my son’s syndrome for their advice, my husband would research headphones. Within minutes of posting my inquiry to the Facebook group (“Help! It’s time! Tell me what you did and help me figure out what to do!”) I had responses. Not perfect answers, but ideas. I realized that many of my fears were completely exaggerated. The drugs weren’t all bad. There was a special walker that could work. The wheelchair wasn’t the worst thing. And most of all, there was company and commiseration.

My recent dream hit all my nightmare buttons: being late, unprepared and disorganized, inconveniencing and disappointing others, appearing and actually being incompetent (two separate but equally humiliating fears). But what really scared me in the dream was observing myself be unable or unwilling to do anything about it, the acceptance of paralysis. Today reminded me that there are plenty of times I’m scared stiff, and that sometimes all I need to do is to take just one small step, especially when that step is asking for help and companionship. Because being afraid is bad, but being paralyzed by that fear is the real nightmare.

Do you have a scary aspect of your child’s care or development that’s got you frozen? What small action could you take that could help you get unstuck–even if it’s as simple as asking for company?

 

Getting off on the wrong foot

Skärmavbild 2017-04-03 kl. 19.29.30.png“Louis, this feels like the beginning of a beautiful friendship” says Humphry Bogart as Rick Blaine in Casablanca. I don’t recall what Louis had said or done to prompt Bogie’s remark, but it certainly wasn’t whatever happened to me today when my son’s new doctor’s office called.

Walking to the bus on my way home from work, my phone rang. Blocked caller ID, which for me means only one thing—health care. I answered despite walking on a dusty, busy highway with a nearly dead cell phone. “Hello, this is the XX office at YY hospital. Your son had an appointment today at 1pm. I’m calling to find out what happened.”

My mind started racing through the pile of mail on the kitchen counter. No, I would have remembered if we had been “summoned,” as I like to call it; in our new country, the overwhelming majority of health care follow-up and specialty appointments are scheduled by health care letter that lands without warning, sometimes with as few as three days notice of the appointment but usually about two weeks. The assumption must be that people are happy to take off work to go to these appointments, because the process of rescheduling them usually involves finding one’s way to a phone during a very limited “phone time” window, nearly always during business hours. Busy signals, call back queues–and most perplexingly, sometimes the only option is to cancel the appointment and then wait for another summons, hoping that the next appointed time spat out by the scheduling roulette is better. If not, see step 1.

But back to the dusty highway. Later searching of the kitchen counter pile confirmed that I had in fact never received notice in the mail, and I confidently said so. “So you’re saying you never got our letter? It was mailed out on March 14,” the nurse said curtly. Clearly, she didn’t believe me. “Well, I guess we’ll have to reschedule it,” she said. “I guess so,” I said, equally incredulously. What exactly was she hoping I would say? “No, let me fly counter-clockwise around the globe and reverse time?” She said she’d send a new time by mail, and I managed to get her to schedule the appointment right then, to avoid having to move heaven and earth at work at a later date. She curtly said she’d still send me the mail, and follow up with a text reminder. “Fine, do whatever you want.” I’m sure she could hear my eyes roll.

I’d hazard a guess that hundreds of thousands of health care visits were missed around the globe today because patients didn’t know they had one, didn’t understand why they needed to be there, or found the rescheduling process impossible. Or maybe because they hadn’t even had a chance to open the mail. Hundreds of thousands of hours of wasted clinic time. Irritation and suspicion all around, at the tender point in the relationship when we should be building trust and confidence. 

Patronizing finger-wagging and mistrust on her end.  Irritated petulance on mine. Is this the best way to start a beautiful friendship? I don’t think so. I wonder what Bogie would say to that.

 

 

 

Parenting in a hospital, then and now

Despite the fact that my son is considered a “sick kid”—a child with multiple, chronic conditions—he actually hasn’t been in the hospital for years. About a month ago, his winter cold turned into pneumonia, and we’ve been reacquainted with hospital life with a vengeance. Parenting a child in the hospital for the first time in nearly a decade, I can’t help but notice how I’ve changed.

The changes in me reflect what I’ve learned from being active in health care advocacy and improvement and may predict the kinds of patients and families the health care system needs to be prepared to work with. Here are some of the differences between then and now:

I write things down. I have a notebook on the table next to me where I jot down when medications or treatments are given, when tests are taken and questions I want to remember to ask. I’ve also brought in a white board that hangs in plain site for everyone, and it’s there my husband and I post the questions we want staff to answer or where we list things we need. It’s interesting to watch how staff have started turning to the board during rounds or at shift change and pro-actively addressing things on it.

I look things up. In the past I relied on staffs’ explanations of what was happening. Now I look up terms, conditions and treatment that I don’t understand or just try to learn more when things don’t make sense to me. I also know more about how to tell the difference between trustworthy information and speculative advice.

I consult my on-line patient community. My son has a very rare genetic syndrome, and sometimes the care team has questions about whether the unusual presentation of some of his symptoms are related to this syndrome. Luckily, the family community we have on Facebook can be a resource—maybe not with the academic rigor that scientific articles offer, but it’s great to have a place to turn for info.

I ask better questions. In addition to writing my questions down so that I don’t forget them, I also ask questions to clarify and confirm what I just heard, or questions about what should happen next so I can prompt folks if it doesn’t (like what time the next pain med will be given). This is definitely a learned skill for me, and in health care it’s often taught to health care workers as a technique called Teachback. Providers as encouraged to prompt patients and families to summarize and repeat back what they just heard as a way to ensure that they’ve understood. No one is asking us to do this at the hospitals we’ve been in, but we find it helpful to do it anyway.

I am better at summarizing my concerns. I have learned that being able to succinctly communicate relevant history and concerns saves time and increases my credibility with staff, which in turn means that they listen when I talk. I wrote about the SBAR techniques years ago, and it’s especially useful when you’re in the hospital. When a group of doctors, residents, interns and specialists walk into the room, it helps to be able to get your concern across quickly.

I am better at communicating what’s important to my son and to our family. There is rarely only one treatment option in any given medical situation. When there is more than one choice about how to proceed, I want my son’s priorities to be taken into consideration. It’s up to me to let them know who he is as a person and what his priorities are. I don’t always know for sure, and I let them know that, too. If I can see that he’s anxious and they want to bring in five students to examine him, I’ve learned to say no. If he hasn’t slept well, I ask them to clean up the medical schedule to limit interruptions the following night.

I have better self-care coping skills that let me stay more present for what’s happening. When my son was younger, I didn’t understand that I needed to take care of myself in order to take care of him. It’s a challenge, but I try to prioritize getting sleep, eating as best as I can, and staying connected with people and ideas that keep me positive and strong. Given this past month’s political turmoil, that hasn’t been easy or even felt like the right thing to do at times.

I better understand and respect the roles of the professionals on my son’s team. I used to think that the doctor was the boss of the care team, and that everyone else was there to do the doctor’s bidding. Now I understand that each professional group has its own focus, modality and power. I try not to waste doctors’ time with nursing issues, and vice versa. I appreciate the creativity and problem solving of the physical therapists and the child-life specialists, and ask for their help. I value the work of the cleaning staff and the food services personnel, and I try to make sure they know it. I know that the radiologist won’t give me much info on what they see on the ultrasound unless I ask in a very particular way. Knowing who does what saves time and prevents frustration.

I consider myself part of my son’s health care team. In the past, I used to see myself as part of my son’s entourage, and the health care providers as his care team. Now I think differently. I know that whether or not the hospital staff see me as such, I am part of his care team. I know his medical history and priorities better than anyone. I often know the most about his genetic syndrome. I am sometimes the only person who can literally understand what he says. I know that my vigilance can prevent errors and increase his safety; people make mistakes and hospitals are not always healing places. I know that my involvement can reduce the length of his hospital stay. And if nothing else, I know that the hospital staff is too busy to get his food, bathe him, make him comfortable and keep him sane—and these are all critical to his health. So I am part of his team. Therefore, I expect to be part of treatment decisions. I expect to be able to sleep in his room and be with him around the clock. I expect to be told about his condition using actual medical terms, not just vague notions of him being “very sick.” I expect to be included in rounds. I expect to know what tests are being done, and I expect to see those test results as soon as possible. I expect to be able to have a say regarding who is on his care team. I expect to know what his providers are concerned about. In short, I expect to be treated as part of his team. (In fact, I consider him as part of the team, too, but that’s a topic for another day.)

I show the staff what my son is like when he’s healthy. My son was really sick for a while there, and was barely conscious at times. Combined with his developmental disability, his symptoms made it difficult for those who didn’t know him to see him for who he really was. We created a photo slide show on his iPad of pictures that showed him happy and healthy, and we had it playing during shift change and rounds. We hung his smiling school photo above the hand sanitizer. During this past month, one of his nurses watched the slide show and turned to us and said, “OK, that’s what we’re aiming for.” Seeing him healthy helps everyone interact with him in a way that encourages healing.

I still have so much to learn. I think health care does too. I’m not sure “the new me” has always been welcomed by staff during the past month. Hospital procedures are clearly the product of an earlier time, when patients and families were passive objects of health care, and providers were the only experts. Things have changed, and these changes are at times rather painful for all of us, patients and providers alike. Hopefully my experiences can give a small glimpse in how more active inclusion of parents when their child is hospitalized can show where we are headed, and why we might just want to get there faster.