MAYD to Birth: At Your Doorstep

Promoting gentle, empowering mother journies…

Parenting "Out of the Box" ~ A Holistic Approach to "Special Needs" and Leaving "Disability World" Behind! Part 1–The Landing

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     Our daughter, Mary, has spina bifida. ( This is a defect in the spinal cord that occurs very early in fetal development- by the 6th week.  It literally means “split spine” and, depending on the type and severity, it results in various forms of paralysis, bowel and bladder problems, orthopedic issues and potentially, problems with every system in the body.)  Mary is now 7 years old and the light of our lives and a beloved little friend to many.  I think I can truly say, without leaning too hard on a tired cliche’, that to know Mary, is to love Mary.  She came fully loaded with this incredible ability to love and connect with, other people.  She’s most powerfully drawn to those who seem, in some way, marginalized, or forgotten.  As a toddler, not more than three or so, she would routinely find her way to the person sitting alone in a room, and start a conversation.  She’s a very juicy kid; very awake and aware.  To my mind, her disability counts as a great strength in that she seems to understand the limits of weakness; the fact that what seems to look like a disability may, in fact, prove to be the core of our strength and abilities in this world.  I really think that’s true of, and for her.  Mary is a very “whole” person!   To the world, though, and certainly to the various institutional systems and service providers; she not only “has” a disability, she “is” her medical diagnosis; she “is” spina bifida and all that entails for them. 


 When she was first born, we were ushered into the “system” in the most overwhelming way. While sitting in the NICU with our baby daughter, days after her two neurosurgeries: one to close her spine and the other to place a shunt in her brain to drain excess fluid; most kids with spina bifida also have hydrocephalus (water on the brain ) due to a defect in brain structure called the Chiari Malformation; her “future” as seen by her team of physicians, nurses and other health care providers, was laid out for us.  We were told about the “Special” services we were entitled to by law, which included in-home physical and occupational therapy which would follow her into the school system to provide “services” there.  We were given many brochures and business cards from wheelchair and orthotics vendors, suppliers of other kinds of medical supplies such as urinary catheters and diapering supplies.  We were then told that her “clinic” visits and further testing would begin within a few days of our return home with her and given cards with dates and times on them.  In the days that followed, we were given a fairly bleak prognosis for our daughter: she would certainly never walk, would probably, in fact, not be able to sit unaided, she would likely have multiple shunt failures requiring shunt revision surgeries.  She would need braces, and special shoes, and a wheelchair.  Because she has what is called a neurogenic bladder, meaning simply that the nerves controlling bladder function don’t work, she would require catheterization multiple times daily to empty her bladder and to prevent kidney damage that would occur if retained urine backed up into her kidneys.  Pretty scary stuff overall!   I could clearly see that it was very important to these folks to convince us that they were needed!  I could also see, just as clearly and with growing compassion, that this was not mere manipulation but genuine concern as many of the children do, in fact, develop multiple and potentially life-threatening problems with spina bifida.  But Mary’s bladder, for instance, was emptying on it’s own.   She also seemed to have some movement in her hips and upper legs.  While I was required to correctly perform a bladder catheterization on my daughter before taking her home, and did so without challenge to anyone, I had already decided against catheterizing her until and unless, someone could prove to me that she was having problems with urinary retention and so far, no one had.  In short, I didn’t believe much of what they told me about my daughter’s potential and I had no interest in a life devoted to service providers and I surely didn’t want them in my home a few times a week.  I took Mary home from the hospital and we decided that we were going to live a normal family life with our new daughter and our other kids and with that decision, we began to take our leave of “Disability World”.

The great strength in all of this, for me, was having gone to Nursing school, followed by being a Midwife and a Homeschooling parent.  Nursing school gave me a more sympathetic, but realistic, view of the medical system and their thinking while Midwifery had grounded me in “normal” and allowed me to see that not all “variations to normal” are complications or real problems.  Homeschooling had taught me that children and families are their own best experts on what is good for them and had also given us a real strength about being creative and open in approaching problems, along with an easy acceptance of unconventional solutions.  All of this helped a great deal with our determination to include Mary in a rich, and full life at home and within the various communities of which we are a part.  I’m very aware, though, that many, many families do not feel confident, or able, enough, to question the system, let alone disregard or alter, the recommendations given them.  It’s very important, though, for families to know and understand that their child is, first and foremost, a child.  It’s very easy for parents of children with disabilities to sink slowly into thinking about the “problems” first, and the “whole child” second, if at all. 

 The entry into “Disability World” is insidious and can, and often does, take over the life of the family.  Multiple visits to Physicians, Physical and Occupational therapists, trips to the orthotist for new braces, or upgrades and multiple hospitalizations for surgeries all loom large for many families.  Not only does the family often lose sight of what a normal family life feels like; they often lose hope that it’s even possible.  In truth, the severity of a child’s disability play a real role here.  I do not want to diminish the impact that a seriously disabled child has on a family and I know that there is a real difference between a child like Mary, with a disabling condition that still allows her normal cognitive function, the ability to participate fully in family and community life and finds her in relatively robust health versus the impact, for instance, that our son Samuel had with an immanently life-threatening set of problems that did, indeed, require non-stop, round-the-clock care.  I in no way want to convey a casual attitude towards children’s medical problems and needs!  Sometimes, there are no choices, and no roomier or more comfortable approaches.  To these families, I offer my complete sympathy and prayers!  I know your life, and I know how devastatingly hard it is.

Many disabilities, though, are very compatible with normal life and living if we can expand on our idea of “normal” just a bit!   For a child like Mary, there have been a lot of options available for us to ensure that her life didn’t become one long parade of people taking care of her in bits and pieces.  The approach of “Disability World” focuses on the “problem” and builds everything around the idea that there is a “normal” form and function for the body so the focus becomes one of taking an “able bodied” norm and attempting to get the body to conform to it.  So, for example, legs and feet are subjected to orthopedic surgeries and bracing ( even when the child is not expected to walk, or to walk well )and physical therapy is provided to improve mobility skills that they believe will not develop without it!  Occupational therapy is designed to compensate for perceived lacks in the ability to navigate the normal tasks of daily living such as getting dressed, or using a pen to write with, or brushing teeth.  Indeed, all of these tasks can be challenging to learn and therapies do provide needed help with these skills.  But the basic orientation is that there is a “standard” of normal that must be met so, for example, some parents will spend literally years seeing an Occupational Therapist to teach a severely disabled child to eat with a spoon instead of being fed by a parent or other caretaker.  The idea is that that this is more “normal”, never mind that it may be completely unrealistic in a child with severe functional and cognitive disabilities that will always require a caregiver of some sort to assist with feeding. The “goal” becomes “Johnny will feed self using spoon”.  The only need here is that the child get fed; why does it matter how that happens?  Because the “goal” is the “able bodied norm”!  But whose goal is it, and whose yardstick for “normal”?   The end result is often only a stressed out and worn- down caregiver ( usually the mother ) who will commit over an hour to each meal insisting that her child use the spoon, which she will often still have to help guide, or be wiping up food off the floor, instead of feeding the child, enjoying the interaction possible in those moments, and moving on to something more “real life”.  Which is more “normal”?  If the mother also has other children to care for, or a job, how realistic is this, and how much unnecessary guilt is felt by parents when the goal isn’t met year after year?  What price paid in terms of parents and children both assuming failure at something that wasn’t a reasonable goal to begin with?   I recall talking with a mother at the spina bifida clinic who complained that her son had spent nearly 10 years going to weekly Physical Therapy designed to “prepare him to walk” and he still had not taken a single, independent step and used his wheelchair (happily, she was quick to add) all the time for mobility.  She wondered out loud “who the therapy is for; us or them?”  Good question and the beginning of parenting “out of the box” wisdom!

I found my ultimate salvation and encouragement in a woman named Cathy Snow.  Cathy is a wonderful, and compassionate woman who wrote a book called “Disability is Natural” that I landed on during a random internet search using the keyword query, “natural, normal life possible with a disability?” which resulted in a several months long ( and still occasional ) correspondence with her and the purchase of her illuminating book.   Cathy’s son, Benjamin, was born with cerebral palsy and she experienced, first hand, the endless parade of services, attitudes and even, language, that distorts and disrupts the lives of disabled people and their families.  She too, dutifully signed on to multiple therapies and programs all designed to “fit” her son into some kind of life; but not the life she dreamed of for him, or increasingly, the one he wanted for himself.  When Benjamin was 6, he told his mother that he wanted to quit therapy and she went ahead and let him.  She took him out of the school system and began homeschooling him and did a complete about-face in how she viewed disability, her son’s life, and the potential in that life for him.  In closing today, and before we go on to the next several “segments” of this topic over the next couple of weeks; I urge you to check out her website, www.disability is natural.com and, if you are interested or in need, order her book! 

Till Next Time…

Kneelingwoman

Life Learning: Some Call it Homeschooling…for us, it’s just life!

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When my husband Ben and I first met, we had a very brief, but prophetic conversation about exactly two subjects prefaced by his handing me a very small newspaper add cut out of the local paper offering 200 acres of land in the Upper Peninsula of Michigan “for sale” near Hancock, Michigan which, for those of you who don’t know my beloved U.P is way, way up there and way, way west, to boot.  Now, we had not yet had any conversation that would have clued him in that this might be a quite effective and appealing way into my little heart but, there it was!  He assumed, based on several weeks observation and close listening ( alright, he’ll admit to eavesdropping ) on my conversations with other people, that I would be charmed by such a show of insight and indeed I was!  The second part of the conversation had to do with educating children.  I rather clumsily announced, in between mouthfuls of my tuna sandwich, that I didn’t think that school was good for children and that I thought I might just “homeschool” my kids.  I fully expected this particular litmus test for compatibility to pretty much wipe out any future for the two of us ( as it had, frankly, for several other suitors, along with the general fact that I was, alright, still am,  something of a handful ) but the earnest, gentle and genius-y young man in front of me heartily agreed that homeschooling was a great idea and he would be all for it!  Sold!

As the marriage began and the babies arrived one after the other in pretty quick succession, the idea of “homeschooling” began to emerge as more of a lifestyle issue than one about education as a separate and distinct part of life.  For both of us, and then for all of us, education became something that was assumed as a normal, everyday part of living.  Homeschooling was still a relatively new concept and practice and for those of us starting out, there was no roadmap or agreed upon set of “how to’s”.  As my husband and I reflected upon our own educational experiences, we realized that there were some fairly stark differences in our educational backgrounds that yet led to a dovetailing of attitudes and beliefs that ended up forming a very confluent idea about what constitutes “real” education.  My husband was an ‘A’ student from the beginning, educated in private Catholic schools in Detroit and New York City, class valedictorian and graduated University in 3 years flat and found school and schoolwork easy and rather dull but found real learning on his own to be quite compelling and exciting.  He hated the confinement and social pressures of school but was, and is, an exceptional and passionate life-long learner who thrives in the world of books, numbers, and the natural world.  I was an A/B student, educated in small, almost rural community public schools.  I was an early “music” prodigy ( someone said so ) studying piano by age 4 and ‘voice’ by my early teens.  I was enamored of literature, writing and science and I loved music, of course, and literally lived alongside an inner soundtrack of harmony and poetry that allowed, if not encouraged, an interior life that nearly eclipsed any kind of social learning at all.  I was horrifically shy and had a great deal of trouble reading social cues and understanding what I was supposed to be doing when in groups.  I’m sure someone might well have slapped an “autistic spectrum” label on me at some point, had people been inclined to do such things then, but as I was a good student and also very sympathetic and empathic with people, when such was called for, I managed to kind of sleepwalk my way through the required 12 years of public school immersion and then went on to University with no particular problems. 
  Clearly, neither of us had an exceptionally “bad” time in school, but it was not something we found intersting, or necessary.  We both concluded that our time would have been better, and more effectively spent, learning on our own and out in the world among real people who were doing real work instead of being “taught” second hand, what the world out there might be like. Both of us had experienced the joy, and exceptional thoroughness, of a determination to learn something we had chosen, and were passionate about, almost entirely on our own. I learned Midwifery in exactly this way.  From the moment my “calling” to the work became clear to me, I began a rigorous and detailed study of medical textbooks and the few midwifery texts then available,  took classes and tested myself and learned emergency skills well beyond anything I had learned in Nursing school!  I found experienced practioners and got any hands – on experience I could get, wherever I could get it.  My husband had similar experiences with “passion-led learning” and both of us had a genuine distaste for dilettantism so, we really knew that we needed to invest ourselves fully in our interests in order to maintain their integrity.   Our homeschool “plan” for our own kids, then,  evolved into nothing more formal than living daily life at home with us and out in the world interacting with others and noticing and making connections between things.  They spent their days building relationships and being exposed to as much of the great art, literature, philosophy, history and political and social science as could be gained from reading books, watching films, talking to, and building friendships with, people who work in those fields.  Most importantly, we encouraged a lot of privacy and time alone to learn who they were, and what they cared about, and how to go about building a life of meaning and purpose for themselves.  Our house has always been truly “open” with a daily round of friends and family stopping by to talk, or to have coffee, or stay for dinner.  We strongly believe in truly radical hospitality in the sense that we literally never turn anyone away from our home or family.  All are welcome and as a result, I can honestly report that we have an abundant, and remarkably diverse “tribe” of people who come and go at will and have brought so much joy and love into our lives and have been an essential part of our children’s “education”.  
  So, we have never been part of a “homeschool” group and have known only a few other homeschooling families over the years, mostly among my midwifery clientele’.  I wasn’t interested in finding “like minded” families per se.   I wanted my children to interact with the great diversity of our society, and to inhabit a truly multi-cultural interaction with the world.  I wanted them to seek understanding of, and respect for,  different religious, political and social viewpoints and to spend time with people who are poor, homeless, and marginalized and, just as importantly, to get to know people who are wealthy, substantially powerful socially and politically, and to see, through all of that, that people are just people and there are needs and dreams everywhere, among everyone, that are particular to being human and that they can learn to help fill.  I hoped they would find friends from across the spectrum of humanity and indeed, they have.  It didn’t occur to me to seek “support” for homeschooling my children any more than I had for anything else, like Midwifery and the number of other “nonconformities” I had embraced throughout my young adult life.  Even had I wanted such a “social structure” for myself or my kids, it didn’t exist when we started out.  Most people didn’t have home computers or access to the internet like we all do now, so if there were other people out there doing what we were attempting, we didn’t really know about it.  Over the last few years, as I’ve had opportunity to talk and interact with other “early” homeschoolers, I’ve found that we are remarkably similar in both approach and attitudes:   we just wanted to allow our children to learn to navigate the world and it’s wonders unhindered by the construct of what we knew as “school”.  
We made a lifestyle choice to live “close to the root” of home, family and community and to share our own passionate enthusiasm for learning and growing with our children and as a family.  I continued to be very involved in the world and in my work as a midwife.  My husband has done the same and we have both had various individual endeavors and adventures that went far towards keeping life and vibrancy in our home. We didn’t feel constrained or tied down or limited by our choice to homeschool, and if we had, we probably would have gone ahead and put our kids in school because what we felt and still feel, is most important to the education of children is for them to live with adults who model a passionate engagement with learning, and growth that tells them that there is always something more to experience around the next corner or over that next hill and because of all of these things, we stopped thinking of ourselves as “homeschoolers” and adopted the term “life learning” as  the most succinct description of our philosophy of education and our way of living.  Except for a fairly clear cut math curriculum, we have used no particular “method” nor have we done much of anything except live life and, as many of you know, that life has not always been easy, or without tragedy, challenge and difficulty. I have little or no patience for sitting at a table all day with anyone so, we didn’t do much of that.  What explanations or “seat” work needed to be done was done pretty efficiently and quickly and we didn’t worry or get anxious if someone wasn’t learning “something” on cue, or at “grade level” and we were never unaware of those norms–as fate would have it, my husband is a schoolteacher, actually.  He teaches secondary (middle and high school) math and has taught along the spectrum from private schools with kids who were destined, as he was, for the “Ivy Leagues” to an urban “Charter School” for kids who had already been ditched from the Detroit Public Schools (let that one sink in a minute) to his current position teaching at our local ( right up the street ) public “Alternative” High School for young people who have dropped out, or flunked out, and who now want to get their high school diploma.  Across all demographics, he has seen kids who have lost their natural, inborn sense of wonder and curiosity.  Whether rich, or poor, white or black, destined to live on the streets, or in a mansion one day; they’ve all lost the sense that learning and experience, and deep investment in the power and potential of their engagement with life, matters.  My husbands persistent, and daily attempts to rouse their interest in what might ‘be’ around, and within them, is an exercise in futility and frustration yet, because of what he wants to be, and model, to his own wife and children and to the world around him, he presses on, hoping and believing that change is possible, and that faith in that possibility can make things happen. 
 As a family, we’ve never stopped learning, or growing.  We’ve made changes and adjustments to various aspects of life as needed but what we’ve learned is most important is the simple act of showing up every day, doing our best, being always kind and compassionate to ourselves and others, and being open to what life has to teach us!  Children are born curious and eager to learn.  What we most need to do is stay out of their way and provide an open door to the world of ideas, people and experience and to provide and model the kind of peaceful, cooperative and loving interaction with all of it that leads children to trust and to feel safe exploring, interrogating and navigating the unfolding of their own lives.
Occasionally, someone will venture the inevitable, and understandable, comment and query: “Well…..that all sounds great but what do you do all day?  How do you know that they’re learning anything?  What about college and a job someday?  Does all of this interaction with the world teach them how to make a living?”  Yes.  Yes it does and more than that, it teaches them how to make a life……..
My children have always understood, from watching the adults around them, that learning is a process and that nothing comes without a cost, whether in the investment of time and energy it takes to learn something deeply, or in the cost to one’s sense of self, or one’s integrity, when the rubrics of human interaction are breached and compassion is left out of an equation in relationships between people, or in simple dollars and cents.  Everything we do is an investment of some sort.  We have, as a family, lived a very simple life, materially, since the beginning.  We are inveterate savers, scroungers, second-hand-thrift-store die hards and our children understood, from very early in life, that if they wanted something that was outside the “budget”, they would have to earn, and save, their own money for it.  They really took a lot of pleasure, and still do, in being “DIY” ( do it yourself ) people and our small, almost intentional community of eccentric, rather bohemian artists, musicians, writers, birthworkers, chiropractors and bakery owners’ who make up our closest neighbors and friends, encouraged and participated in, our kids’ many creative interests and pursuits as did their generous and equally creative grandparents and extended family!  My children were routinely taken by us, and by all these wonderful people, on travels and outings around the country!  We’ve always made every effort to explore the kids’ interests with them, and to share our own,  by taking them to historic sites, science, art and natural history museums and to some of our greatest cities–New York, Chicago, Toronto and elsewhere, and our oldest two have travelled to Greece and the U.K. by the age of 16 and both were required to earn a substantial amount of the money needed to make these adventures.  My three oldest children have all worked various jobs for pay since around age 10.  Stephen and Emma are both now in College ( Emma just started this week ) and both started “early” at age 17.  Stephen has been on the Dean’s List since his first term.  Clearly, in spite of virtually no attention paid to “curriculum” or a strict code of studies, they managed to learn how to learn and have no trouble now doing academic work alongside their peers.  And that’s great.  But what matters most to me is that they have had the freedom, as I wanted so much for them, to become their own, unique selves and to explore the world through their own initiative and to follow their own interests and learn, from successes and failures both, what it means to be human.
I don’t pay much attention, even now, to the “homeschooling” world out there.  As our youngest, Mary, is only 7 and has a disability, and doesn’t have three siblings close in age, as my older kids did, to interact with,  I have occasionally thought that perhaps some kind of “group” setting for her would be a good thing.  My problem with “groups of like minded’s” over the years has been that they tend to insulate rather than expose, members to any challenge or interaction with other ideas. I am sure, in fact, that if my church were not a very inclusive, diverse and open situation, I wouldn’t be there, either.  I have a real aversion to “club” mentality, I guess.   I’ve realized that what I need to do is make more effort with her to get her out into the world to find her own “tribe” and to model the confidence that she can, and will, do just that. Children with disabilities often have a more difficult time, overall, making friends because their particular issues, be it mobility or developmental differences, sometimes result in a kind of marginalization ( more on this topic in my next post over at Kneelingwoman blog ) so, while Mary has many, many teenage and adult friends through her siblings and parents, she has fewer opportunities to find friends her own age but there are natural, community-based ways to help her with this and that’s always been our first choice.
  I encourage people to really think about “life learning” and all the potential it holds for families and children.  Those of us who embraced this concept 25 years ago really just wanted to offer something more wholistic and real to our kids than what we had growing up.  We weren’t trying to be political or even make a big social statement.  I just thought that kids growing up around real people who could share real work, big ideas and noble aspirations with them made more sense that locking them up in a room with other kids and one adult all day long to learn second hand life from text books and all the rules for being a cog in someone else’s wheel.   I wanted them to learn to cooperate and work and learn organically, circularly, wholistically and that, in a nutshell, is what life learning with the Wilbert’s is all about!
Enjoy the weekend everyone!
Your Kneelingwoman