Part of establishing your identity as a parent of an exceptional (aka special needs) kid is finding the balance between how much the diagnosis sets the course for your life and how you will navigate the sea of fear, pity, ghosting, and denial that you are suddenly weathering. Some will deny anything is different for you, whereas others will act like your life has ended.
Like with any major life change (wedding, divorce, death in the family, international move) during the first few months post diagnosis there’s really little else that will dominate a conversation or more importantly, your own mental real estate. Between the educational planning, home services, the slog of phone calls to insurance providers, medical research AND the calls or emails to close friends or family, there feels like no time for reflection or self care, particularly if you don’t have these as a routine. You can’t control the to-do list, but you can control how and when to interact with others. And if you have a spouse or partner, getting time alone can now be automatically laced with guilt.
In the last few years I’ve been encouraged by the normalizing of setting boundaries with family and friends. This is especially important when we are in the thick of processing a diagnosis. Brené Brown and other researchers have modeled how to take care of ourselves while assuming the best about those we love– through boundaries. I see this with friends who will post on social media or in a text to me about something really hard that they are going through (i.e. depression, illness, body image issues, marriage problems), but they will graciously add, “I’m not looking for a solution or help. I just wanted to share.” The folks who do this love themselves and others a ton. It’s a great communication tool.
In fact, this would have been gold for me in the early years of single parenting Harrison when I’d find myself on the phone with a relative who called “to check on me, ” but then quickly they’d burst into tears over his diagnosis or offer a litany of “I don’t what I’d do if I were in your shoes.” “I couldn’t never handle it.” “You must be devastated.” Or a friend would call to ask why I wasn’t at an event and then go on to tell me how parenting Harrison was in no way different than her neurotypical child. “Uh, okay, thanks?” Instead of redirecting the conversation and reflecting a firm boundary, I’d “politely” listen in fuming silence or I would trot down their lane of misery because it seemed like that’s what they wanted.
Ultimately, I allowed myself to be emotionally tossed about by whatever came my way because I didn’t have a plan or a path forward through diagnosis. I spent so much time worrying more about what Auntie or Cousin were thinking and feeling than taking my own emotional temperature. Because of this, my anger or grief would sneak up on me in very unexpected ways. A small misunderstanding at work would send me on a crusade to prove a colleague at fault. Or I would be resting in pigeon pose on my yoga mat and realize my forehead is in a puddle of my own tears.
Planning for how to care for yourself may seem awkward or selfish at first glance. You might be thinking of how serious your kiddos’ needs are or will be. But this is the proverbial airline instruction of putting on your own oxygen mask first BEFORE trying to put one on your child. And let’s be clear, I’m not defining self care as it appears in a hashtag #selfcaremanicure #selfcareshopping. Though a manicure or time alone in Target might be just the thing you need, the essence of this is making regular time for yourself to attend to your body, mind, and your soul.
When Harrison was seven, I moved as I mentioned in an earlier post, to Half Moon Bay, California. Our place ended up being on the westside of Highway One and a 5 minute walk to the beach. That walk (alone or together), bike rides along the coast, learning to skateboard and boogie board there buoyed us both. Moving our bodies in nature, particularly at the edge of the sea, was life-giving.
Very quickly, I noticed that many parents of special needs kiddos bring them to the ocean. While some can’t tolerate the sand or physically can’t navigate it because of accessibility barriers, many families find their kiddos’ pacing, arm-flapping, or quirky sounds all become part of the panoply of movement and fun –and that in itself offers a physical and emotional respite for parents. And while your kiddos stim on the waves, you might get your toes in the sand or get a walk in the sea air.
If you can find something physical that you can do with your kiddo or that supports your kiddo while you watch, do it. Physical experience is one of the most consistent sources of joy. If you are struggling to find things for your kiddos, one thing that Harrison and later Lazlo both joined was a Challenger baseball team. Instead of tense competitive zones with parents yelling at refs and children crying or sitting in the outfield, there are cheers for both teams and for all players. Everyone practices, plays and will get hits and field balls. Even kiddos in walkers and wheelchairs play. All ages are welcome. Many counties offer some form of special needs supports through local or national organizations like Special Olympics.
Since we are still in the COVID era, Zoom yoga classes are available for free or low cost now. I have continued to have yoga in my quiver of self care as it covers the body and mind through breath, and I’ve recently gotten both kids to join me or at least tolerate me stepping away to practice. I still need to do it alone for the deep relaxation, even if it means sometimes waking up way before or after my kiddos go to bed.
Before Harrison was diagnosed, I decided I wanted to complete an MFA in poetry. I had whipped through a master’s degree in English Literature and Composition in 18 months, so I could get a job teaching. After five years in the college classroom, I realized I wanted something more for myself. Something creative. However, I delayed that goal until I had more of a handle on Harrison’s care and time to attend several poetry writing workshops to build some writing chops before I applied. Did I spend long strings of nights that blurred into mornings grading and then editing poems? Yep. But when I would make that shift from the grading to my own poems, it was like entering a sanctuary or a garden. Time would evaporate, and I would enter my own internal landscape. It didn’t matter if the poems were bad drafts (most were), but the carving out of time to be with my own thoughts, ideas, movement, creative process needed to be a priority. Mihaly Csikszentmihalyi’s book Flow, explores the psychological benefits of this state of mind in depth. I highly recommend his work.
If you are religious or have a regular practice of some sort, you likely have leaned into your house of worship or yogi or meditation circle to find some support. This area became sticky for me and one that I’d like to raise here. Often there is a community or social aspects to any religious or spiritual groups–and they have structures that may or may not be appropriate for your special needs child or be an adequate support beyond what they can offer spiritually.
After Harrison was born, I was attending a local church, and many of the people there I had known for years from college. Nice people and forward thinking and compassionate environment in many respects. Yet, I wasn’t able to leave Harrison in the Sunday School like the other parents were in because of lack of language and behavior differences. So I would either have to have a sitter every week or drop attending. And, like I said before, advocating for help or change was a stretch for me.
Clearly, there is an element to religion and spiritual practices that is also private. So, a house of worship or group may not have the resources or know-how to meet your needs so you need to find ways to meet your spiritual needs rather than just ignore or drop them. It’s important to advocate for yourself or find a place that is a better fit.
Some parents end up spring boarding from diagnosis into advocacy work, writing, teaching or research. They seem to be able to harness the diagnosis into powerful external change. Others divorce, fall into depression, suffer from panic attacks, emotionally disconnect from their kids, or cope with over drinking alcohol or binge eating. I want to suggest that there’s a foundational step no matter what the future holds for you and your family. Pay attention to your body, mind, and soul, giving all of them what they need. Plan how you will care for yourself. You and your kiddo will continue to change, and you have the ability to move forward together —and be like the Roman god Janus—a doorway to transition, a new beginning.
Whenever I hear the word “derailed” in my mind’s eye I see the final scene of Bridge On the River Kwai, a film I’ve seen dozens of times, the first likely before I was ten. And so it was we were deep in this word “derailed” this last month when we suddenly learned that we were not going to be able to buy the house we are living in, one that we’ve been so drawn to since even before we received our 60-day notice in El Granada, last December. After all the emails with the attorney, the bank, the escrow company, and then a sudden, “No.” The news had that film quality; we’d worked very hard to build something, make this home happen, and then the “What have I done?” moment as the plan felt like it was destroyed.
Luckily, we aren’t at war, prisoners of war, and nothing is blowing up. In fact, our lives are seemingly safer than many of our friends who are facing more Delta variant virus outbreaks in their US communities. Nevertheless, Michael and I have been trudging in this “why is this happening” muck while trying to keep everything upbeat and normal for the kiddos. So much is going well, but like the completion of the bridge, this change was not in our trajectory. Or at least it seemed that way.
A few days before we learned about not being able to buy the house, the feral mama cat who we’d been feeding started having her kittens on our roof. We learned from friends that this was her third pregnancy, and with the other two, the father cat promptly arrived and killed the kittens right after their birth. 😳 This time, though, we had been feeding her, and she was stronger.
We kept our distance, but noticed with my zoom lens camera that she had three. After some time, the kittens were getting dangerously close to the edge of the roof, so we moved them to a box and put them where the mama could get them. After a lot of drama, including having to cut the placenta off of one of the kitten’s legs, the mama cat only took two kittens with her. We couldn’t let the one left behind, the smallest, die. So, Michael has taken on the role of Madregata, feeding the kitten special formula from the vet every couple of hours around the clock for the last 21 days. We think (fingers-crossed) that Izzy (Lazlo named it) will survive. She/he? is three weeks old today.
Here in Costa Rica there’s a river near us called Rio Lajas, which is several kilometers long and flows from deep in the jungle into the ocean. Its waters pour over smooth rocks with pockets of deep pools that are like sitting in a cool jacuzzi. Families barbecue on its shores, and it’s a place we’ve met many dear locals. However, when it rains, the river turns a latte color, which is a sign not to get in. It’s best to wait until the silt carrying bacteria from farmlands flows through–otherwise you can get sick.
Unlike rivers, which clearly turn from crystal blue to muck, recently several people (some I know well and some in the news) have been making choices or statements that as poet and author Saeed Jones, in his GQ piece about comic Dave Chapelle, recently termed “ashy” that compel me and many others to make a decision. Where do we stand? It is easy to react, flail with anger, accuse, or cancel the other without thought. I have been contemplating how that disappointment, that need to be uncomfortable is so important. To slow down and sit with the the expression of that in our bodies BEFORE we respond and take a stand —and take a stand we must. But this slowing down step allows us to process. Typically, and especially if we are on the receiving end of being called out for being ashy, we excuse ourselves–hurry to dispel discomfort–using one of the following strategies or reasons:
‘Watching Chappelle contort himself to justify ashy ideas about gender, queerness and identity is harrowing, because the only thing more brutal than someone saying hurtful s**t is someone saying hurtful s**t moments after making you laugh, moments after cracking you up in a way that’s both fun and deeply needed, moments after making you feel like you all got free together.’
Poet & author Saeed Jones
Silence does a number on us. When white people chronically don’t speak up as they see small injustices, they physiologically harden themselves bit by bit–and that’s what makes it easier to not stand up or wrongly justify the bigger racial violence. Pre-1600s, white folks (who weren’t called white) brutalized each other before they brutalized Black and Indigenous people. And they often haven’t considered the consequences of that intergenerational harm on their bodies or their thinking about race.
When we are called out, we can hurl the discomfort at someone else (the victim, the victim’s parents, the system, the board, the network, the government) without processing our own discomfort; it feels good in the short term. But this addiction to outrage seems to be its own contagion and is not a path to healing.
Sometimes crying privately is part of processing discomfort or deep hurt–a good release. But public tears or proclamations of how bad you’ve been or currently are… Or to the other extreme–“I’m not like all the _____ people you know. Or, “I am _____ so I can’t be to blame for ____. ” …all of it deflects the real work from your body onto other people. It’s a control move, namely demonstrating your fear of how you will be perceived. And the discomfort stays lodged in your body.
Somatic therapist and author Resmaa Menakem, in his book My Grandmother’s Hands, talks about the difference between clean and dirty pain that I think is useful in this situation.
“By walking into pain, experiencing it fully, and moving through it, you metabolize it and put an end to it. In the process you also grow, create more room in your nervous system for flow and coherence, and build your capacity for further growth. Clean pain is about choosing integrity over fear.”
It is doing the thing that doesn’t feel good to your soul, even if it does dispel some energy in the moment. Some examples that frequently occur when people or organizations are held accountable include:
It may feel counterintuitive in our culture, but try to sit with discomfort. You got called out. Accept it and let it process instead of fleeing from it. And please don’t try as Menakem says, “to blow your pain through another.” I’m so grateful for many people I’m surrounded by who reflect, take their time, and then they have the courage to take a stand–they are walking in integrity, not fear. I’m grateful for the women of color who have called me out on my white fragility and racial screw ups. It’s not their job, but they cared enough to do it anyway. Slow processing of discomfort on your own, not on the shoulders of others, is adulting. It is something I’m learning to do more of each day.
Nature is often a clearer communicator than humans. It doesn’t blame, lie, or deny. It’s okay with sometimes being murky and not ready for swimmers, and other times inviting, clear and blue.
Last year at this time, we had a knock at the door from our property manager letting us know that after nine years of renting our lovely little treehouse-like home in El Granada, CA, we had 60 days to vacate. Yes, vacate during COVID. Yes, vacate when Michael was still recovering from his rectal cancer surgery. Yes. we had cats, a dog, a fish, and stuff! We had planned a women’s retreat for me for my 50th birthday and a trip to Costa Rica for all of us in March and April that had already been postponed once because of COVID. We had been lining up a potential rental and cajoling friends into joining us. Would we have to cancel the trip again that I had already paid for?
We took a cursory look at rents in our county on craigslist. Single-family homes were double our rent as were two duplexes with storage and that allowed pets. Because of our kids need to vocalize and move their bodies, we can’t do apartments. Out of county wasn’t much better and meant changing EVERYTHING for our kids anyway. If you have exceptional (aka special needs kids) and deal with SSI, Med-i-cal, IEPs, and regional centers, and the meltdowns that lay ahead (mine not theirs) you know what I mean. Like many of my colleagues and friends who don’t have parent help or legacy house equity, we were officially priced out of the Bay Area
.
“Email the owner of that place in Cabuya, Costa Rica” I suggested to Michael. The owner, who ended up living in the bay area wanted to rent, sell, and talk. Costa Rica, and Cabuya, in particular had been on our hearts and in our minds since I was asked to come here for a Study Abroad in 2017. We came here for 10 days in 2018 and fell in love. We thought maybe we’d move in 5+ years. Maybe retirement. If you came for a visit or dinner at our place, you likely were subjected to videos of Costa Rica coastline or jungles.
After scanning prices again our deliberations lasted literally thirty seconds: “Do you want to move to Costa Rica or move to the Central Valley and try to figure out a commute?” I asked Michael. He looked at me hard for a second and replied, “There’s no question for me. Let’s do it.” And in two months we were on a plane with two kids, two pets, two carry-ons, two ipads and my laptop. Our stuff, which we whittled down to mostly surfboards, bikes, skateboards, music equipment, tools, some pictures, kitchen supplies and three boxes of books, arrived a few months later in a shipping container.
The path hasn’t been smooth, straight or obvious. Yet, neither Michael nor I are the type of people who let outside circumstances dictate our core happiness or sense of peace. Gratitude has blown itself through us. We wake up every day to weather that has been healing to Michael (no more eczema) and that we adore. We are surrounded by nature: countless butterflies flit around. Yes we eat papaya, piña, or watermelon daily, AND we have to sweep out tiny gecko poop–daily. We chose the perfect puebla for us: it’s rural, quiet, centered on local community and a handful of friends. We don’t own a car, so we ride bikes and take cabs if we need to go somewhere. Do we have bug bites? A bodega with a leaky roof? Does Michael shake his head at Costa Rican plumbing and construction practices? Do iguanas regularly come into the eves of the house and taunt Monica? YES! So like anything else, it is life. But the shift away from the capitalistic grind, distraction, and brainwashing that we need so much because there are aisles and aisles of it to be consumed is gone. Since we arrived March 1st, we have been able to exhale and live consciously.
For 2022, I’m excited to do the work I feel called here to do. I’m deep into a writing project as I participate with the Gateless Writing Academy and the brilliant Suzanne Kingsbury that will last until July. And I’m hosting my online course for mamas of exceptional kids. I’m getting certified to teach meditation, and much more. With me are a sisterhood of friends I adore and who buoy me. And, I’m still supporting myself with daily practices but am not sacrosanct about anything. I have two shapeshifting kiddos and Monica 😜., so I can’t be too serious. As you reflect on this wild and likely divinely difficult year, I invite you to find the gratitude and path that lights you up.
Big Love for you all in 2022 💜
In my twenties and thirties, I often felt stuck or sort of like a professional pessimist. This mostly centered around relationships, publishing, and finances. “Assume the worst and hope for the best” was my motto. This negativity about the future or about my desires was internal. Yet, I never really thought much about the source of that pessimism or how my milquetoast hope showed up in my body. Despite my resilient exterior, much of my identity was grounded in being a victim. And up until the last five or so years, when challenging things would arise, I took on some real Sigourney Weaver Alien energy. Lots of battling to survive.
Since those decades of mental doom and gloom, my internal landscape has improved a great deal. There’s better flow between my physical body and my emotions. I don’t have outbreaks of cold sores, deep acne, or chronically pulled neck muscles. Even better, I feel confident in my ability to manage life’s “xenomorphs.”
But in the last month I’ve had a string of incredibly satisfying but unexpected things happen. I’ve been reflecting on what’s different now?
I had been wanting my mom to visit here in Costa Rica since we moved. It had been horribly smoky in the Redding area since early summer to the point where she felt trapped in her small apartment. It felt like the perfect time to have her come. She has only been to Canada and Mexico briefly decades ago and doesn’t get to travel often. She wanted to come, but didn’t want to fly alone, and she needed to renew her passport. Once we realized we were returning briefly to California to bring back Harrison to stay with his dad, I called her and said l”Let’s do it!” She got the passport application mailed off July 8. I booked tickets for her, without assuming anything one way or another. I didn’t rehearse negative scenarios. I just kept the thought, “Wouldn’t it be nice.” We were cutting it close, but I kept saying, if it is meant to be it will happen. On the 12th, the day before I drove up to visit her, I checked her passport status online, and it had been mailed. The notice said that it should arrive to my mom’s on the 16th, the day we were supposed to leave California. Not enough time to drive and pack, etc.
I arrived to the acrid air and permanently beige sky, and I got excited. “Maybe I can sweep her out of this depressing place,” I thought to myself. After lunch we were chatting in her living room and heard the letter carrier outside her door. When he left, Mom went outside and BAM! there was the passport! It arrived three days earlier than the government had anticipated. Needless to say we had a blast with two days in Sausalito at a breathtaking house a soul sister offered us. And then we relished about a week to show Mom all over our part of Costa Rica.
And just a few days later, another gem!
My nephew Nate and his love Darren, who I never had the privilege of meeting before, came for a visit to Cabuya. We were able to get to know each other and show them the beauties of the Nicoya Peninsula. We hiked, swam, snorkeled, kayaked, and feasted. And whew, they are just enjoyable people–a couple I would seek out as friends even if they weren’t family. Lazlo affectionately calls them “the cousins.”
And finally, we found a house to buy. Yes, you read that right. It is a long circuitous story for another time. But in just under two weeks, this will be our new abode. I made a list of all the things we wanted in a place, and just didn’t allow myself to worry or fret about it. We looked at rentals, but ugh, I’ve rented for 32 years and each of them weren’t quite right. Two weeks ago, Michael was riding his bike back from the grocery store, and the owner stopped him to ask if we were interested. YES! The house is literally next door to our current home. More land, less living space, but we are sooo excited. Everything on my list is here. Lazlo has already tried out the pool a few times, and he approves.
There are other gifts that are emerging, but I’m not ready or able to share them yet. However, I’m certain that these exciting events are symptoms of the improved flow I’ve been experiencing. I can point to my daily practice to calm my nervous system and open up my mind and spirit to deep acceptance.
This is not everyone’s jam, but for those who are curious, I currently do a combo of short meditation using Insight Timer 8-15 minutes, 15 minutes of basic yoga moves, 10 minutes of handstands (Shout out to Nate and Darren!!) and 20 minutes of swimming laps. A bajillion short ones in our pool. Because I have people and animals to care for, I wake up at 5am when no other humans are up. The quiet and the routine for me is like cheesecake or a strong gin and tonic. Better than that, actually, but I look forward to it with deep pleasure. It’s like I told my inner critic and doomsday ego to go take a vacation or go smoke some weed or something. I don’t need their services any longer. And, wow, I would love for everyone to feel this good and have a string of gifts come their way too.
The first step is to let Sigourney retire!
There are stages that all parents pass through as they begin to process a special needs diagnosis. And it’s important to know that these stages or phases exist so that you can be mindful that any negative feelings or reactions can and will pass. And when I say special needs this includes physical, emotional, social, behavioral, or learning disability/difference. There’s a clear range, everything from the kiddo with a 504 plan with mild sensory integration issues, to a nonverbal kiddo with major medical challenges. Whatever the level or type of special needs, parents and caregivers need to process the new path they are on. Are there positive stages and phases? Of course, but those aren’t likely what hang most parents up.
I write this as a mother of two special needs kiddos. With my older son Harrison, I often felt incredibly isolated, misunderstood and stuck in a stage or phase that didn’t serve either of us well. Later, I realized that the struggle was within me, not him. It was after my son Lazlo was born (when Harrison was thirteen) that I was able to show up as a very different and much more effective parent because of time, self-care, mindfulness and awareness of these stages.
As a caveat, in addition to autism diagnosis for both sons, Harrison also has epilepsy and has had some other long term medical challenges. And, before Lazlo was born we were pregnant with a daughter, Sophia, who had Trisomy 18, a 95% fatal condition within the first year. I wrote about her passing in 2012. And later I published a poem “Wisdom at Sweeties” about our memorial tattoos for Sophia. So while I often write about autism and developmental delays, I have had some ongoing experience with processing medical challenges in special needs kiddos as well.
This is typically the moment when either your sneaking suspicions are confirmed by a psychologist, pediatrician, or similar specialist. Or you are blindsided, like I was, by a diagnosis when I thought I was just going to get a little expert advice for helping my toddler. Or perhaps, this might appear in the form of reading a book about a condition and knowing instinctively in the quiet of a bookstore aisle that these challenges or traits are exactly what’s happening. It might also be a trusted friend or care worker coming to you nervously about their concerns. All of this to say, it may come on slowly like a brewing storm or like a tsunami. And depending on a plethora of other factors, you might move directly into the next phase or need more time to process and find your feet.
What does lingering in the shock phase look like? There can definitely be disassociation. I would over work, staying busy to avoid processing the feelings. I noticed many out-of-body moments while driving or waking from a nap. I would suddenly realize I didn’t recognize where I was–whether that was in my room or on a highway or why I was driving there. Or the phone would ring and I’d answer and be talking and realize I didn’t know who I was talking to. Panic attacks can even surface if a person is stuck in this phase long enough without processing the feelings around the news.
This phase might fluctuate and be within yourself or those around you. It often comes out as avoidance and silence, all while suppressing fear and anger. But, it’s normal because we often need to adapt to the immediate demands of our lives rather than be paralyzed. If you are in denial, it shouldn’t be shamed. Be gentle with yourself. If those around you are denying your kid’s diagnosis, it can feel like a form of gaslighting. Grandma or your best friend who has a child the same age don’t think there’s a problem. They say you are over-reacting. For myself, I would read books, but not believe the diagnosis. I would look for clues or errors in doctors’ evaluations of him. I downplayed how much work emotionally and physically caring for Harrison was demanding. Some family members and friends would say things like, “he’s fine, all kids are different, it’s no big deal.”
If you have a partner, denial of a diagnosis can be a huge influence on the relationship. If you and your partner are of the same general view and want to take the same approach for caring for your child, then it might bring you very close together, where you feel deeply understood and supported. However, if you don’t have a partner (Harrison’s dad Ed and I split up just before Harrison’s diagnosis, not because of it), or if you and your partner are in denial about the diagnosis, then the weight of it can be too much for even the most seasoned relationships. Ed and I joke that splitting up before Harrison was diagnosed was a godsend in that we’ve always had a mostly amicable co-parenting relationship. And as each of us could get real breaks from Harrison’s care, time away gave us the room to both work and care for ourselves in distinct and equitable ways. If we had been together, the power plays for whose work was more important would have been incessant. In my observation of many families, one parent tends to take on the lionshare of the emotional and sometimes the physical aspects of parenting a special needs kiddo–and the resentments and repercussions of not getting their personal needs met first, are detrimental.
I hovered in this phase for a few years. This is the phase that I personally feel like was the most toxic. When I had to delay going into an MFA program or when we didn’t get a birthday invite from a friend’s child or when a kid at the doctor’s office asked if Harrison was a kid or a monkey because of the noises he was making–Whew! All of these were sparks. I felt I was a righteous victim and wanted anybody’s ear onto whom I could direct my wrath. To identify as a victim wholly is a visceral experience. When I was in this phase, I was the most unconscious and felt a physical heaviness. I was blinded by my own pain that I often couldn’t see what a fabulous kid I had.
Part of my victim mentality was imprinted growing up in an alcoholic and dysfunctional environment. Previous traumas can get shaken up with a diagnosis that’s unrelated. But the other contributor to my identity as a victim was existential. I was coming to grips with how I viewed God and my evangelical Christian upbringing. I felt myself not buying into the idea that anyone not a Christian was going to hell. Or hell itself. I knew I didn’t resonate with the idea that God gave me a child with a disability because I was an inherently bad or sinful person (one branch of religion) or that God was either testing my faith or trusted that I could “handle” it (another branch of bologna). When I was finally able to get out of this stage, (it unfortunately happened in fits and starts), I’d like to say that I became self-aware and zen about my new life and identity, but that was not the case. Regardless of my own walkabouts towards consciousness, I suggest that becoming aware and practicing self-care and love is the one way to move out of this negative, cyclical thinking.
Another phase parents (and I was no exception the first time around) can get stuck in was going to find the perfect therapy, remedy, or service to heal or at least alleviate a kiddo’s ostensible challenges or differences. Harrison was diagnosed in the late 1990s, a time when less was known about autism, and some legitimate sounding doctors with special needs kiddos were pointing to all kinds of theories and ideas about the cause. I jumped on that train for about four years, draining my savings and retirement like so many parents who long to fix or help their child. I’m not against good science-based therapies, but along the way, I have heard or read in all kinds of journals that the following can contribute to autism:
As exhausting as this limited list may be to read, equally exhausting are the so-called remedies that so many parents are desperate to try. I was repeatedly promised by seeming professionals that Harrison would be mainstreamed into Kindergarten with their treatment plan. Luckily, I didn’t do any of the overtly riskier ones like IV chelation or vitamin B therapy, Hyperbiotic Oxygen therapy, or stem cell therapies), but to be honest, at that moment with the right funds and influence I could have been talked into some of these, I’m sure. The feelings of helplessness are palpable, but I later learned they are a choice. In addition to the direct danger to my child, I also did emotional harm by viewing him through the lens of a problem that needs to be fixed rather than a kid who is perfectly himself and worthy of my love and presence.
At the tail end of my four year Sisyphean effort to dissect autism from my son, I hit a wall. I knew the remedies weren’t helping. All of the hope, money, reading, and planning tanked and so did I. I had come home from a contentious IEP and called a friend to chat about it. While I was out running errands, she dropped off a bottle of scotch on my porch. “Yes, thank you.” I thought. It wasn’t at that moment that I started over drinking, but it was at that moment where I remembered feeling like the alcohol numbed out the part of me that felt raw or unraveled and unable to figure out a way to move forward. This was a dark few months. Lots of day drinking gin and tonics, wine with dinner and scotch over ice or neat at night before bed. One day a few months later, his teacher sent home a note that Harrison had a new word, he asked for “tonic water,” which I had let him have a sip of (minus the gin, of course). Somehow this note shook me up. I immediately thought of my depressed neighbor from my childhood: Pat, watering her yard with curlers and wearing a housecoat with a cigarette and a scotch in the same hand. To me, she always felt sad and tense. I knew I didn’t want to be like Pat, so why was I making habits that followed in her footsteps? Slowly, I came out of this numbing. It wasn’t linear, but I made some changes that eventually lined myself up for healing.
The first part of acceptance is self-care. It isn’t about mustering a feeling that isn’t there. It’s about feeling whole. I directly ask my family for help. I knew I wanted to try some meditation. I wasn’t a meditator and had only brief experiences in yoga classes that I had started to regularly attend. I heard about a free or donation based 10-day silent Vipassana meditation retreat. So I asked my mom and sister and her family if they could come to my place and watch Harrison while I attended. Five of the days, he was with his dad, but the other five my family stepped up. Afterwards, I think they had a better idea of the scope of caring for a high energy special needs kiddo. My brother-in-law Brian took Harrison and his cousin Joe boogie boarding and bike riding along the coastal trail. He said they did the 7 mile loop more than once and Harrison was ready for more. It was good to feel understood. No wonder I was always tired.
At the meditation retreat, I had about 10 hours a day for ten days alone with my own thoughts. It was very challenging. I left my phone in my car in a parking lot at a distance from the campsite in the woods of Occidental, California. No speaking or even much eye contact. Up at 4:30am and in bed by 9pm. Days 3-6 were the hardest, both because it was over the Christmas holiday, and I seemed to replay every worst case scenario, while trying to just breathe and focus as instructed on various areas in my body. Eventually, on day seven, I hit a rhythm, felt lighter, and was able to stay in the moment. So many consecutive days without having to talk or take care of anyone was a gift. I actually dreaded talking by the last day. It was a real mental detox, and the greatest take away was that I had trained myself to be aware during my normal moments like waiting in line. Also, I learned to make a space between a trigger or uncomfortable thought, and my response to it. I could actually see the thought in my mind’s eye and have time to ask myself, “Is that a positive or helpful thought or should I just let it go?”
Coming to a place of peace is necessary in order to move forward in any reasonable way. It looks different for everyone. Over time, I made exercise, yoga, short meditations (sorry, one hour Vipassana sitters) and intention setting, writing, reading or journaling a habit. Once I fully dropped into my own self-care so that it became routine, I was able to get curious about Harrison and how he sees the world. The funny part was that as soon as I made the shift, Harrison sensed that mom was happier, more fun, and interested in him. We started to joke, do activities like biking, jogging, boogie-boarding and skateboarding together, and he started to make gains like reading independently for the first time. Did all of the challenges evaporate? Heavens, no. But I now had the inner and outer resources to navigate them. And I could be present with him, even in difficult times, and not have it impact me personally. If he struggles, I’ve learned that I can guide him, but it really isn’t my personal business in the sense that it isn’t a reflection on me, nor is it my emotional toll to carry. He is his own person that needs respect, love, and freedom just like we all do.
Though I no longer feel like I’m in an emergency, I can liken it to the airline safety message: “Put the oxygen mask on yourself before you put it on someone more vulnerable.”
Many people who have friends with newly diagnosed kiddos, often ask if I can be there as a support. Some turn to or find parent support groups. These can be vital resources for caregivers and their children with special needs. Many exist on social media and provide medical, legal, educational, and referral advice. Others are community based and offer everything from teen gatherings (pre-COVID) to parent yoga classes online. (Yay, MOCHA)
I suggest if a parent group doesn’t fit your style, don’t give up. You might need to change or move to another phase before they work. If you are in a stage like Anger/Self Pity and you hang out with parents who are already at ease with their kids and diagnosis, you might not resonate as these aren’t groups where they are interested in angst-ridden diatribes or woe-is-me type of presence. They will likely be upbeat, talk about how great (not difficult) your kiddo is and have a generally positive take and sage advice. This is good for you.
When I see a mom’s online post about anything from bad science to Facebook Live of their child’s challenging behavior while they talk about how depressed they are, I fight the urge to not angrily confront them about their exploitation of their kid. But then I remember when I was at that stage (Thankfully social media wasn’t a thing back then.) and I remember in my body how I felt similarly. No, instead of anger, after a few breaths, I realize that my best response is compassion. Those behaviors, often like their children’s, are there because they aren’t aware of other choices or are not getting their needs met. We are all so much more similar than we’d like to imagine.
We recently took a productive and exhausting visit back to California, where we enjoyed the hospitality of our dear friends, got vaccinated, sold our car for a profit, celebrated Harrison’s final days at Oakhill School, updated our technology, and picked up a few items we needed in the jungle. We purposefully didn’t visit our old neighborhood because Lazlo is still struggling with the idea that “730” is no longer our house. What Michael and I both noticed (and again we weren’t near the beach for the eight days) was that our stress levels shot up as we spent a lot of our time freeway driving, in line at department stores, and indoors. Yet, these were things that we did for years. While we had plenty of natural beauty in El Granada, the weather (wind and temperatures) kept us indoor a good portion of many days.
After day two of our visit, I realized I physically missed my morning meditation on my back porch with the cacophony of birds, howler monkeys, and general jungle noises that greet me daily. Proximity to nature or actually being in it –all doors and windows open from dawn to dusk, is restorative.
Many studies back this up. One out of University of Derby offered strong evidence that exposure to nature is key to our wellbeing.
According to Dr Richardson there is already research evidence that exposure to nature can reduce hypertension (abnormally high blood pressure), respiratory tract and cardiovascular illnesses; improve vitality and mood; benefit issues of mental wellbeing such as anxiety; and restore attention capacity and mental fatigue. But more than that, feeling a part of nature has been shown to significantly correlate with life satisfaction, vitality, meaningfulness, happiness, mindfulness, and lower cognitive anxiety.
Jeremy Coles, BBC.
And here on the Nicoya Peninsula we are in a blue zone, only one of five in the world, where more people live on average to 100 years than anywhere else in the world. For those of you who walked with us through Michael’s cancer treatment, have you seen recent pictures of him? He is evidence that this place is healing. Now Michael feels better, but what about the swimming tarantula that I fished out of the pool, the zillion of mosquito bites, the “congos” those black biting bugs that jumped out of a tree behind our property and attacked Michael’s scalp. There are dangers and challenging experiences the closer you live in nature, but there are so many things that we get to see that we otherwise would never experience.
This leads me to why living in Cabuya is so important to us. We are living in a community that few expats or wealthy vacationers are interested in. There are no white sand beaches, ATMs, department stores, white tablecloth restaurants. They like it this way, and so do we. Integrating into a community that is close knit, centers on fishing and local agriculture, is poor but proud, is a privilege. We are building trust, asking questions, moving humbly, helping where and when we can, learning a ton, and relishing in their warmth and humor.
In Cabuya we feel the most free and where we can have the greatest impact, while managing our own health. From Paolo Fiere I have learned and daily practice to immerse myself in the actions and moments of those who I am drawn to connect with. I cannot perch myself on an expansive piece of land (likely not benefiting local people in its sale) and be removed from the lives of those who could find more freedom from education and self-advocacy. The house we are living in was built in 1986, and that feels good that we aren’t tearing down more jungle for us to be comfortable. If we love, we experience together by living in proximity to those who we can walk alongside and learn.
This reminds me of when many friends, families and educators would question our decision to let students come over to our home often and live with us. From the top of a hill in El Granada, in a now economically exclusive (we were forced out) neighborhood, we could never know the students who needed us and who we could learn from most. So, we opened our home and heart, and it was life changing. I learned more from those students and the student experience in general than from any academic meeting on student performance.
We don’t feel ready yet to share more about the lives of those we are building relationships with. I could likely ask permission and they’d oblige, as they are kind and very generous. But we are in the nascent stages of building trust here as outsiders–Americans who have the reputation and ability to colonize for the need to consume and be comfortable. And our Spanish needs more work. We can carry on conversations about all of the basics and even understand some jokes and more complex concerns, but we are nowhere near where we need to be for the work we want to do.
Each day we are learning how intertwined this community is: we have narrowed down that there were about four major families (many with 10 children each) that lived here since the 1940s. Most Ticos (what native Costa Ricans call themselves) in Cabuya are from one of those families and many of them married each other so most folks here are related. So when we build a connection here, there is a woven history that we will be working with.
When I teach college students about antiracism, one exercise I often ask them, “Who have you been or are you now near?” I ask them to look at the racial makeup of their neighborhoods and schools and have them share with each other and reflect how that has impacted them. Repeatedly, most white students never noticed how white their neighborhoods were and were only aware if they had previously lived in a racially diverse neighborhood or in a white minority neighborhood. Most Asian, indigenous, brown and black students were hyper aware of the racial make up of their communities and schools (some bussed to a different area). It was illustrative to white students on a very practical level how unconscious they were of their white dominant environment and how it likely shaped their views. Yes, even in the SF Bay Area.
So, who are you near and what does that say about your values? And if you teach, how physically close to your students’ daily lives are you? There are ways to be close without selling your house or moving to another country. But it takes work, time, creativity, and the willingness to be uncomfortable, to be the minority. Actually, to embrace being untethered in some way.
I don’t know when or if or for how long we will return to California. Those answers will emerge in their own time. But I do know that living here immersed in nature and among Ticos has been the best decision we’ve ever made as a family.