Monday, February 9, 2015

don't ask; don't tell

Like clockwork, I arrive at my shopping every week at the same time.  Same produce market, same TJs, same staff shift … to the point where if “my team” isn’t on I’m a bit flustered.  At the produce market I use my limited Spanish to thank the checker, to ask her if she’s done filling a bag, to warn her about an open bag of oranges.  “Gracias,” “Listo con esto?” “Cuidado.”  She’s asked, more than once, if I speak more Spanish.  “No, no … un poquito.  Only un poquito.”

Today, she asked if she could ask me a question.  Usually, alarms go off; but today they didn’t.  “The little girl?” “yes” “She’s your daughter?” “yes” “The little girl?” “With the hat?” “Yes. 
“Is she sick?”

“No, no she’s not sick. 
“She’s just different.” 

So caught up in trying to parse through which aspect of The Blonde prompted the question (pale skin? permanent, large-brimmed hat?) I barely heard her explain that her son didn’t talk, then she gave him some vitamins, and now he talks.  “How old?  How old is your son?” “Eight.”

She wrote down the vitamin source (a website) and a product name (something with “Jr.”) and I thanked her.  Then, I sat in my car and cried.

The Blonde’s mannerisms are inseparable from The Blonde.  She is not She without the twirling and swirling, the vivacious vocalizing.  The Blonde lives in a world of her own creation, where today’s world may have different rules than yesterday’s or last week’s.  Something in the mix tipped off the cashier. She asked like she’d been working up the courage to, like she’s wanted to ask for a while.

Is she sick? I cried because the difference is noticeable, despite my desperate hope that my baby girl comes across as fine.

When The Blonde was first diagnosed with autism in late 2013 there was much rending of clothes and railing at the universe.  I mean, really, autism?  That’s big; not something temporary and curable like, say, the measles.  Aw. ‘Tis. Um.  Just saying it felt like a trap.

Even then, we knew she wasn’t simply autistic. For as many Big A markers she exhibited, there were an equal number of Certainly Not A behaviors and patterns. How many standardized forms have I completed where all answers were “YES” or “5 on a scale of 5” or “constantly”?  Looking at the numbers The Blonde has ADHD, ASD, RAD, ODD, and SPD; her IQ is above average; she is preternaturally verbal; she stores words like a computer. Yet, she has limited self-care abilities, does not understand even natural consequences, and insists that her brain holds all the characters she’s ever read and that they, not we, are the real world.

Is she sick? I cried because she may not be reachable.

Medications have been shifted and tweaked.  Timing is important.  She swallows without questioning. She can’t remember to take them herself.

Is she sick?  I cried because my daughter is dependent on mood altering chemicals simply to live without abject fear, and the violence that comes with it.

Tests have been ordered to explore her brain, her DNA, her wiring, her prospects. 

Is she sick?  I cried because there may be no diagnosis. I cried because there may be too many to fathom.

I’m sure that the word this gracious lady chose had more to do with my limited Spanish than her grasp of English.  Or, perhaps, with her idea of what her son faced every day as a non-verbal eight year old. 

Is she sick?  I cried because the adjective was an option.

No one ever asked before.  I was never forced to tell.  It allows us to live in a world of euphemisms.  Our girl is “tactile,” “high energy,” a “kinesthetic learner.” The first psychiatrist obscurely described her as “not neurotypical.” Our girl is “working on it,” “doing well today,” “full of life and love.” Our world is filled with bending not breaking, ignoring unwanted behaviors instead of tackling them head on, wondering if today is the day … if today is the day she finally connects.

Is she sick?  I cried because I’d never allowed myself to think it before.

It’s a perfectly plausible explanation, so simple when someone else says it. Others must have assumed so already: Doctors, therapists, teachers, her friends, ours. So many vacations cancelled, jobs declined, play dates unscheduled. So many excuses piled high around our fortress.

Is she sick? I cried because our normal is living with the question … unanswered.

Tuesday, July 29, 2014

help is a four legged word

Trapped in his wheelchair, Walt (no real names here) is quiet during the daylong event.  He acknowledges no one, not even his wife who regularly places her folding chair back and to the left of his transport when we sit for lectures.  As the group travels around the buildings and grounds, Walt is always hiding mid-pack.  He asks no questions; seeks no clarification.

Near the end of the day, each of us is paired with a young dog whom we are to take through their paces (“sit,” “down,” “let’s go”) and correct them (“don’t; sit”) when they are not responsive.  Silently rolling to the front of the room, Walt grabs ahold of his dog’s leash.  It’s as if he’s opened a box, peered inside, and found his fifth birthday party: Walt’s joy fills the room.  Looking down at his dog he commands, “Francisco, sit” and Francisco does.  “Good boy” croons Walt to the black Labrador who is now looking at Walt as if he were cheese-studded bacon, “Good job.”

As part of our ongoing search for “that which will calm our daughter” we discovered assistance or service dogs.  “Service dog” is a general term for a dog trained to do a specific set of tasks for a specific person.  Seeing eye or guide dogs are service dogs, as are hearing dogs and dogs who open doors and pick items off the floor.  There are also service dogs who alert their humans to oncoming seizures or drops in blood sugar; this is a sensitivity they attune to after placement.

In November of last year, we applied to Canine Companions for Independence (CCI) for a skilled companion service dog for Princess Pea.  After many steps in the process, at each of which we could have been released from the program, she and I made a trip to the local CCI regional training center in Santa Rosa, CA, for the final step in the process: Our personal interview and tour.

Twelve potential recipients, and their support entourages, were present during our time at CCI.  The day included a tour of the campus, a history of CCI, the process by which a puppy becomes a service dog, and (the pièce de résistance!) actual touching of and working with the dogs.  The day ended with a one-on-one interview. 

From their website: “Canine Companions for Independence is a non-profit organization that enhances the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure quality partnerships.

In part, our application to CCI read:
[Her] life has been one of upheaval and uncertainty.  First with the life transition of adoption, and then with the continued intensity of her sensory input and processing as a result of her autism.  She is mainstreamed at school and doing well academically, but must be managed at all times with various interventions, pull-outs, time-outs, and 1x1 attention.  She comes home exhausted and overloaded.  She has no friends.   
A service dog would help [her] manage the anxiety brought on by autism and low vision.  It would aid her in redirecting when she begins to stim, self harm, or grow too intense for companionship.  A dog would be a calm, consistent, reliable, unconditional source of support and affection.  It would help our family regain some balance.  It would help her dad and I find a place of peace and safety.  

CCI has a paid staff of about 65, mostly dog trainers and fundraisers.  Volunteers handle the rest of their extensive operation.  Recipients do not pay for their dog or that dog’s training.  CCI relies on donations to provide fully trained dogs as well as accommodation for the entire family and some meals during the two-week Team Training.

Each year, CCI volunteer Breeder Caretakers foster mama dogs in their own homes.  On average, 700 puppies are born each year.  After the puppies are born, weaned, and socialized (at about eight weeks old) they are all sent to the main training center in Santa Rosa for a vet check, spay/neuter, microchip, and vaccinations.  Next, they are sent out all over the US to volunteer Puppy Raisers who begin the basic training and housebreaking of the dogs. At 14-16 months, the dogs are sent to one of five regional centers for advanced training.  During the six months of advanced training, the dogs learn more than 40 generic commands as well as how to work around mobility devices (wheelchairs, walkers, canes).  Some dogs are moved into the Hearing Dog program.

After advanced training, the dogs are paired with their recipients for team training, an intensive two-week period during which the recipients learn how to take care of their canine companion.  On average, 250 teams are created each year.  There are currently more than 1900 active CCI teams. Dogs who do not make it to team training (for health or temperament reasons) are adopted, usually by their puppy raiser or a CCI staff member.

When we first started down the service-dog path, I was reluctant to throw my hat in for a full-breed dog since I find that mutts are so generally wonderful and available.  CCI breeds Labradors and Golden Retrievers, and 90% of their dogs placed are a mix of the two.  Still, the image of a dog “made for me” found me cringing.  For this reason alone, the visit to the CCI campus was an education.  These dogs are working dogs, bored stiff by inactivity.  They thrive on following their leader and being praised for good pack behavior.  As I watched each dog with each member of our little ensemble, I marveled at Lila’s ability to walk right next to Chad in his wheelchair and at Phoebe’s insistence when lying exactly to Sally’s side. Watching the dogs “get,” “visit,” turn on and off a light (“light” and “switch”) and open doors was incredible.  And, they knew it too. 

At the end of the day, Princess repeated how much she wants a service dog.  She told the trainer at our private interview, she told me at lunch, she told anyone who would listen.  At this point, we’ve done all we can do: Filled in all the forms, sent in letters of support from our doctors and therapists, and cuddled uproariously with Francisco the wonder Lab.  Now, it’s up to CCI.  If we are placed on their waiting list, we could wait up to two years for our match.  CCI prides itself on connecting the right dog with the right human.  We should know before school starts this August.

To make our wait more meaningful (whether it’s a week for a negative answer or two years for a dog), I’ve decided to dedicate all of my upcoming race-walk training and races to CCI.  If you choose, you can donate via my personal webpage:

If Princess doesn’t get a dog, someone worthy will -- many someones. The page will remain active while I train for the US Half marathon in November 2014, the Big Sur Marathon in April 2015, and beyond.   The openness on Walt’s face when he led Francisco, the joy in Chad’s laugh when the dogs misbehaved, and the determination on Sally’s face as she struggled through the effects of her stroke just to lead Lila around in a circle will remain in my heart. 

At CCI, HELP and LOVE are four-legged words. 

Sunday, July 27, 2014

a letter for my daughter, but really for me, about autism

Princess Pea,

Mama is in the middle of the road, so very close to your diagnosis and struggling to move on.  When we adopted you all, we knew it could mean a child in our home for a lifetime.  Well, we said we knew.  We didn’t.  And, now that I’m looking at this scenario up close, I’m scared.  Scared that I can’t do what I said I could do, scared that you’ll notice, scared that you’ll care.

Prescience is nicknaming you Princess Pea because every little thing seemed to bother you when you were a baby, only to find out at eight years old that you are autistic.  Or, maybe that’s coincidence or callousness.  Any way, it’s clear now that all the peas really did bother you, all those sights and sounds -- so many sensations for an already overwhelmed mind. 

Perhaps we should have named you “Patience,” the irony would have been so deliciously, sickly bittersweet.

As you grow, I watch the socio-emotional milestones you meet at a glacial pace and know how hard you try… oh, how hard you try.  And, just as attentively, I watch the patterns you refuse to release or release yourself from.  The mess I clean up after mealtime, the volume when you speak, the endless picking and squishing and you always trying to hide it all.  As if it weren’t all a part of you.  And it is: All a part of you.

Living with your autism has meant making decisions I never thought I would be forced to make.  Autism, as you well know, is a world of overwhelming anxiety and endless frustrations.  Medications help, and we choose to use them.  I could say that we choose to make you take them, as if they were impacting only you.  But, the truth is that our family would cease to function if we couldn’t have this clearly effective way to manage your anxiety and anger.  For you, every emotion is physical and the meds help control their vector, their force and direction.  The meds allow us to take vacations. They keep you in school, even though we aren’t supposed to talk about them there.  The meds allow you to sleep through the night.  Without the meds you were “uncontrollable,” “loud,” and “clingy.”  Now, you’re “energetic” and “enthusiastic.”  For this we’re “happy.”

There are also the restrictions, places we can and cannot go and activities we choose to hold you from.  Events we dare not attend.  This is a difficult for all of us; your brothers don’t have the same reactions, the same sensory needs as you, yet are forced to live a life that is most comfortable for one member of our family.  “Fair” has taken a permanent vacation.

Where did it come from, this processing difference of yours?  Are either of your first parents autistic? Does depression run in your family?  Perhaps everyone’s a genius.  These are all markers for the potential of autism.  What I believe, after reading and researching and looking and listening, is that your autism is the wholly organic result of the desperately under-stimulating environment of your infancy.  Orphanage care, I’ve come to realize, is the gift that keeps on taking.

You asked on Saturday if animals could be autistic.  And, that pushy gentleman creeping on our conversation decided to ask Siri instead of listening to my answer: Animals are, by definition, autistic.  They have only a now; learn tasks by repeated, specific example –completely dependent on time and place; and experience all emotions physically. Scientists say the pre-frontal cortex (PFC) makes us human, and most animals have PFCs of little strength.  Autistics, too, lack the strength of connection between the PFC and the rest of their brain.  No one is in charge to tell the brain what it’s just experienced.

This is why you see detail so well, why the difference between now and then, this and that, here and there are so acute for you.  “You didn’t wear that shirt this morning” isn’t a casual comment; it’s a statement of discomfort. There has been change. “This isn’t how we drive to Peet’s.”  “Why aren’t we using the other plates?”  “But I wore something else last time.” All of these, and more, are markers of a growing anxiety … signs to me that I must slow time again, make it all OK for you, find a place of sameness so stagnating I cannot breathe in its thick air.  It’s where you are comfortable, so I go.

At some point, I must have flipped a switch; moved from mom to caretaker.  This hurts more than I have words for, because you deserve both and I yearn to be your mama. I just haven’t figured out how yet. Your mama tries hard every day to accept your autism and live with unbridled joy … but cannot seem to reach this nirvana.  You see, my girl, I love you with all my heart and soul and yet I regularly wish I didn’t have to live with you. It hurts to not want to live with you, the totality of you.  It’s as if, maybe, I don’t really love you if I don’t love your autism. And, let’s be honest, autism’s a tough disorder to get all cuddly with on a regular basis.

So where does this leave us today, right at this moment?  I describe you as a three-year old trapped in a nine-year old body.  We let down our guard when you are so intelligent it takes our breath away, when you can manage physical and emotional challenges with ease, when you talk clearly about a philosophy only sages and old masters comprehend.  It is only when we next find you painting the bathroom with nail polish or flushing a book down the toilet that we are maddeningly brought back to the circular truth.  No matter what you are or what you have or where you sit or when you speak, no matter why it all happened or when it will change or if it will change, we must parent to your most pressing needs.

I am at a crossroads: Refusing to accept what might be the inevitable (because nothing, not one thing, that I’ve ever touched has gone as different from imagined as this has) and understanding that, by not accepting, I’m making it worse.

And, I love you.

Friday, February 28, 2014

Trans-Racial International Adoption from an Orphanage/Foster Care System, with an emphasis on China (part I)

[the three parts in this tome were first written by me in 2008 for the now-defunct blog zarfing sunshine.  Since I'd like to talk about the lasting impact of orphanage/institutional care here at the life waiting, I'm reposting here with my very own permission.]

December 7, 2008

Where to start: We thought we'd have biological kids with no issues and instead are home with (soon) three trans-racially adopted children who were born with medical or genetic conditions which will impact their entire lives.  Ta da!  Where do I buy a ticket.

The information below is what I have gathered, researched, and distilled from countless sources on adoption, attachment, trauma, and race.  The presentation stems from a conversation (a five-hour conversation) I had with my mother 18 months after our first child came home.  For those 18 months, we were living in a reality so foreign to our expectations, so all consuming, that we didn't much communicate with anyone who didn't Get It ... who didn't have a traumatized, wary, beautiful child of their own.  I have talked about loss on this blog.  We were not the only ones whose expectations were not met.  I figure that our need to therapeutically parent our children has resulted in more loss (emotional and financial) than we care to quantify.  Because of this, we are keenly aware of, and grateful for, those friends and relatives who have stayed by our side and who continue to support our family vision.

There are many reasons why folks entering into an adoption may not understand the complete emotional impact of their future child's former life.  When we were considering adoption we did a fair amount of research on countries (including the US) and programs with various agencies and groups and never once were offered information on attachment, grief, or trauma.  Though it is every individual's responsibility to understand the contracts they are signing, and nothing forgives our initial naivety about international adoption, everyone along the chain should claim responsibility for the health of the children and families involved.

[Before I go on: I have thought through the wisdom of posting this now, while we wait for China to approve our final adoption.  As you read through these posts, you may feel I am placing blame or pointing fingers at governments and countries of origin.  Not so.  Humans are biological beings, driven by DNA to need specific input for growth.  No one country, or one childcare situation,  has a monopoly on good or bad caretaking.  I know of children who are not attached to their biological parents due to ineffective parenting skills or in-utero drug and alcohol use.  It has twice been our humble honor to adopt a child from China, and we will be forever grateful that the country entrusted us with their children.  I truly believe that, in the majority of cases, governments are doing the best they can with the children left to their care.  My mother once asked why China, with its great wealth, could not care for more children better.  I wondered, as she asked, why America (with its great wealth) cannot do the same. Why American elementary school teachers do not earn a living wage, for example.  Why newborns continue to be left in dumpsters.  Why America has the highest infant mortality rate of any other developed country on the planet.  The short answer is: They can, they simply choose not to.  I do not understand the reasons, and I still do not place blame.]

International Adoption into the United States is a business.  The home study agencies, placing agencies, facilitation agencies, and t-shirt producers are all in the business of making money. Relatively few are non- or not-for-profit.  Because everyone along the entire chain needs to be paid for their work (just as every doctor, midwife, anesthesiologist and RN needs to be paid after you give birth in a hospital), the entire system relies on maintaining a large enough group of people who are willing to make a cultural, emotional, and financial (there is no insurance co-pay for adoption) leap that is only possible when the destination is presented as attractive and safe.  This is why it is rare to read about the difficulties in adoption unless you're in a position to need that information (e.g.: your new child intentionally hurts the family pet then you look up "Nancy Thomas").

When we were beginning our third (current) adoption I did more research into the US foster/adopt system.  Because we had a child in mind, my search parameters included kids in our waiting son's demographic and excluded infants of any race.  As you read what I have to say about the impact of pre-adoption care, keep in mind that this deprivation and trauma is not exclusive of back-woods, under-financed orphanages in third-world or emerging countries.  In the US, the bulk of the healthy (no birth conditions) seven-to-twelve year old boys I saw available for adoption were described with euphemisms like "would be best as the youngest child in the household" (possible meaning: acts out sexually or abusively), "very active, loves the outdoors" (ADD, ADHD), "is looking for a strong father figure" (defiant), and "needs someone willing to advocate for his needs" (FAS, PTSD).

Luckily, we've learned. We've researched, read, listened, listened, listened and found someone to talk to specifically about our children's emotional needs.

How does it happen?  How do children born on this beautiful and lush planet become angry, withdrawn, beings intent only on emotional and physical survival? I'm writing here of three specific topics: Control & Anxiety, Trauma, and Grief and have divided the information in to three parts: Before You Meet Them, How They Respond, and How You Can Help.  This post  will only cover the first part.  It is important to remember that all experience lies somewhere on a spectrum.  Not all orphanages are bad ... or good.  This series will talk about what I consider to be the "average" experience.

Part I: Before You Meet Them

Webster's defines trauma as "a disordered psychic or behavioral state resulting from severe mental or emotional stress or physical injury, an emotional upset."  In China, as in many countries participating in international adoption (IA), children are housed in group care facilities we refer to as orphanages.  In China, the children are technically foundlings, children found after unknown parents have abandoned them.  Regardless of how well the children are treated in the orphanages (and some are treated well), there can be a reasonable assumption of "emotional upset" if not "severe ... emotional stress" associated with the abandonment and institutionalization of a pre-pubescent child.

Grief, "deep and poignant distress," can also be assumed.  Distress comes from the child's losing known faces, sounds, smells, tastes, and both physical and emotional feelings.

Anxiety ("painful or apprehensive uneasiness of mind usually over an impending or anticipated ill, fearful concern or interest") is the result of this grief/trauma combination.

To understand how these three forces can work together in a small body, one needs to first understand the attachment cycle.  For most biological parents, attachment happens without any planning.  For adoptive parents, a conscious effort must be made at every interaction with their child until that child is healthfully attached.  Children attach with people when those people satisfy basic needs for the child.  The pattern is rage (crying, screaming, quietly searching with hands or mouth), satisfaction (diapers are changed, milk/forula is given, blankets are replaced), resolution (body is comfortable, tummy is full, body is warm).  By repeatedly having their needs met by primary caregivers, a child emotionally connects with and trusts the folks providing the resolution.  Ultimately, the child becomes healthfully attached.

A healthfully attached child believes three things: they are lovable, trust in their parents is wise, and help is available. In short, these are kids that everyone wants to be around. There is a spectrum of attachment, from this healthy attachment to severely unattached (RAD -- reactive attachment disorder -- falls on this end).  Along the middle are diagnoses like: insecure, avoidant, ambivalent, anxious, and disorganized.  Children who do not have a healthy attachment to a primary caregiver are at risk for never forming attachments.

There are many reasons why children who are in institutional care (including foster care) might not have the attachment cycle completed.  (There are also many reasons why a biological family might not form healthy attachments, but that's not my area of focus.) In most orphanages, children are fed and changed on a schedule ... not when they're hungry or wet.  There are rarely enough caregivers to give one-on-one attention to each of the children.  And, frequently, the nannies are young and untrained.  In addition, the child:caregiver ratio is so disproportionate that an institutionalized child almost never learns what it is like to live in a small unit, a family.  What they do learn, and quickly, is that people in a position to satisfy needs come for a short time (an eight-hour shift, perhaps) then go.  There is no consistency.  Older children learn that if nanny tells them something they don't like (don't go on the stairs, no hitting, etc.) it's only a matter of time before nanny leaves and another takes her place

In short, the children are not learning that it is safe and wise to put their trust in adults, they do not learn that help is available to them without question.  Because of the uncertainty, the children are at risk for developing low self esteem, figuring that if they aren't worth the effort to satisfy their needs, they surely can't be worth much at all.   Infants are especially vulnerable because of their size and inability to meet their own needs.  And, if an infant grows into toddlerhood in a situation where needs are consistently unsatisfied, their worldview can become fairly bleak

Institutionalized children also learn to level out their emotions.  Crying doesn't work when they're wet or hungry, so the skill is lost.  On the other hand, children who are consistently happy and engaging are most likely to be fed, changed, held, and spoken to.  A star is born.  But, this star has learned to be charming to get what they want at the same time they're learning not to completely trust adults. And, they've learned to be indiscriminate with the cuddles they use to get necessities.

As they become more anxious about having their basic needs met, a child's anxiety begins to skyrocket.  As infants, children have a twenty-minute anxiety window before fear and the related chemicals (cortisol especially) begin to, essentially, corrode the brain and shut down the system.  In childhood, the brain creates tens of thousands of connections each day, enabling us to learn, grow, and sustain our own life.  Cortisol acts as an acid wash in the brain, breaking apart those precious connections.  Once the connection is lost, either the skill is lost or it must be relearned at the expense of learning a new skill or making a new connection.  Imagine, then, what has physically happened to the brain of a child who was left by their biological parents and found an unknown time later, then brought to group living situation where they eventually learned to not cry.

Also inherent in most group care situations is a fair amount of physical restraint.  It would be untenable for a staff of 10 to manage 30, 40, 50 infants if each had freedom of movement.  In infancy, most children are kept confined to their (usually shared) crib.  As they age, they are frequently put in "walk abouts" for long periods of time or stationed on small toilet chairs as a kind of basic potty training.  In the winter, they are bundled so thickly they can't move their limbs.  In the summer, hands are tied down so they won't pick at mosquito bites.  Most children miss one or two cognitive and physical developmental steps.  Many never learn to crawl, and go straight to cruising on their toes.  Unfortunately, crawling (the coordination of four limbs for syncopated forward motion) is just one of the ways the brain learns to wire itself correctly.  Remove the skill and you've removed the brain functionality.  Stimulus, visual and tactile, is at a minimum.

There is also outright physical and emotional abuse at the hands of those the children trust to care for them.  They children still learn to trust, and to love, their abusers.  But, they also learn that adults will use their superior strength to hurt.

Food is not plentiful.  Clothing and toys are shared.  Rooms are unheated.  In some countries, many of the kids aren't even citizens, they are non-entities living at the grace of the folks who donate money to their orphanages and foster homes.

Have I covered everything?  Abandonment or relinquishment by those who were supposed to love them forever, check.  Emotional trauma, check.  Low-stimulus living environment not conducive to mental or physical development, check.  Abuse at the hands of their caretakers, check.  For the kids who grow mature age within the system: An unhealthy sense of omnipotence, check.  Deprivation.  Loss of individuality.  Let me know if I've missed something.

At the end of this cabaret of emotional strain, the new parent arrives.  What is the most phenomenal day of our life is simply another, unwanted upheaval for our children.  They are taken away from every sense memory they have.  They lose everyone who is important to them.  Gone are the cultural norms they've spent nine months ... two years ... eight years perfecting.  In most cases, they are removed from folks that look like them and placed in families where they are the only.  Unless they are of legal age, they do not make the adoption decision for themselves.  The path of their life takes a most dramatic turn and they have no ability to make impact.  They are powerless.

Or so it seems.

Wednesday, February 12, 2014

and, in the end

The moment we heard the autism diagnosis for The Blonde, we made two changes:
1. We spoke to her more concretely and with less metaphors, idioms, and jokes 
2. Everything else.

Autism (aka: Autism Spectrum Disorder or ASD) is a combination of differences in brain development resulting in difficulties with social interaction, sensory processing, motor coordination, sleep, and communication; repetitive behaviors; and gastrointestinal disturbances.  Folks not on the spectrum are referred to as "neurotypical" which tells you a bit about how folks within the autism community perceive of the disorder.  Autistic people are not damaged, they're just not typical.  Which, I guess, makes them super-duper spectacular!  

The adage used frequently to couch the autism experience is: If you've met one person with autism … you've met one person with autism.  No two people manifest the brain atypicality in the exact same way.  Though there are repeated patterns of behavior and thought (hand flapping and spinning to bleed off excess energy, say, or a communication of omnipotence based on the inability to fully connect to other viewpoints), every autistic person is unique.

When the doctor confirmed the diagnosis she followed on with, "There's no 'cure' for autism because there's nothing broken.  There are, however, thousands of paths for your family to follow.  You won't be able to follow them all, so choose what's most important for your family and go from there." In essence: You can address the sleep and the motor coordination, or the sensory processing and the social skills, but to address all of the issues at once would be too overwhelming.

It made sense at the time.  It took me months to figure out what the reality of this advice really is: No matter what you do, how hard you try, or which paths you take there will always be another equally valid path you could have travelled.  And, you will ponder that path incessantly. My life with kids has been an endless plate-spinning circus show (cue the "Sabre Dance" music!).  It's hard work, and I've managed to keep all the plates spinning on top of their wobbly sticks.  But, it's stasis; it's not growth.

Like many folks on the spectrum, The Blonde wanders at night when she can't sleep and elopes when under stress.  (This latter is a nice way of saying she runs away and hides when she's upset.) Living with autism (my daughter is autistic, the rest of us live with autism) can be like like living with OCD, bi-polar disorder, and schizophrenia. No one who meets my little girl in public would know that she is capricious at home, elated one moment and sullen the next.  Though we have found some triggers and patterns, there are still moments when her moods and ability to move between them surprise us.

There are days when I just feel like stopping it all and pretending that there's nothing atypical about my child, that she doesn't need constant adult supervision or time out from the classroom to simply sift through all the sensory input.  Can't she just go to gymnastics with the rest of the girls her age?  Learn the piano in a group lesson? Join kids on stage?  She's fearless in front of crowds, has a perfect ear for music, and would dance 'til dawn if we let her.  What would the damage be if we stopped the occupational therapy, enforced rest schedule, and somewhat limited diet and just let her roam?

From experience, we've learned that the less structure she has the more out of control she becomes. She will create structure when it's not there, even if this self-imposed system does not mesh with the physical reality of time and space. She does not feel safe without boundaries. Calm consistency is key.  And, that's totally easy because we're all robots.  No, wait, we're not. So, yeah, calm consistency though key is neither completely calm nor consistent.  I've learned to mask irritability with antic behavior, pure frustration with singing, and exhaustion with a cheerful, "now you read to me for a while."

In the end, I want what all parents want: Happy, resilient, growing people who are capable of forming healthy relationships. It will all come.

I'll say that as a mantra: It. Will. All. Come.

Thursday, February 6, 2014

in which we discuss the unmentionable

While I wasn't here at the life waiting I was trying an experiment at scattering gratitude.  It didn't exactly work.  Well, not as I was expecting it to.  Turns out I live most of my days in supreme gratitude, sometimes extreme gratitude.  Writing about that felt self indulgent and unnecessary, so I've moved my keister back here.

scattering gratitude isn't the only experience in the past year that didn't go as expected.  Parenting, it turns out, can hand you more surprises than a surprising amount of surprise.  Parenting swims in the deep end of the surprise pool.  It orders the triple-scoop surprise sundae and tops it with every hot surprise sauce they have on the menu.  The whipped cream?  Surprise.

And, I shouldn't have been.

The Blonde was 30-months old when she joined our family.  Since she has albinism, she is legally blind and that comes with a whole host of sensory and social issues.  Even so, we always knew something wasn't typical about her, her extremely high energy, her intensity, or her lack of body awareness and that her low vision couldn't explain it all away.  From kindergarten on (she is now in 3rd grade), she has required an intensive 1x1 aide to be with her in the classroom.  Back in K, we just thought she was upset or traumatized or off-kilter because of her vision or infant care.  It took us five years of knowing The Blonde, of trips to multiple therapists, psychologist and psychiatrists, of working with educators, para-educators, and doctors to finally come to a diagnosis of autism at the beginning of the school year.


I had spent years avoiding the label, despite her being in active occupational therapy for sensory processing disorder.  Nope, didn't want an autistic kid.

Most folks around us shuddered a the label as well.  "She's too verbal," they'd assure us.  "She loves you so much."  These folks didn't know about the lies at home, the bold-faced lies, and the stealing, and the midnight rambles.  They weren't privy to the private conversations between herself and her imaginary world.  They hadn't watched her pick the plastic pearls off a pair of leggings, then a hole in the leggings, then at herself.  No one but family was with us at restaurants where she became physically impossible to restrain.  She saved her flopping, flapping, pinching, vocalizing, and spinning for home.  Where we invited no one.  Where we hid from playdates and birthday parties.

Then, in one week last summer, I watched as one of her meltdowns led to an emergency, listened as I was told she jumped into a lake from a paddleboat (she can't swim), and stared as she held herself back from dancing on stage during a show in which she was not participating.  The song?  "Stubborn Love" by the Lumineers.
She'll lie and steal, and cheat, and beg you from her knees 
Make you think she means it this time 
She'll tear a hole in you, the one you can't repair 
But I still love her, I don't really care

At that moment I Knew, knew without a doubt, that my child was autistic.  By the time the chorus came ("keep your head up, my love") I was in tears.  I went home, watched "Neurotypical" and "Temple Grandin" again … and again … and announced to her doctor that we needed a diagnosis.

When you have a special needs child, folks like to sigh and nod and trot out the old "Welcome to Holland" essay written by Emily Perl Kingsley in 1987.  It likens the discovery of disability to planning for a trip to Italy only to end up someplace else entirely and ends: "But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

In autism circles, the joke is: "Welcome to Beirut."  Or, to be more current, "Welcome to Syria."  Because living with autism is like living with live IEDs.  You never know (you. never. know.) when an explosion will trigger.  In my less stellar moments, I refer to The Blonde as "our little domestic terrorist."  I can't remember the last time I had a more stellar moment.

This post started with the concept of gratitude and my realization that I live in an extreme version of it.  I can think of no other way.  No, I am absolutely not grateful that my child has to experience the daily inner pain of autism.  Not. Grateful.  But, if I didn't look to the light, I could not survive this experience with her.  I'm grateful my child can verbalize (like a TV trial attorney!).  She is beautiful and full of light.  She sings songs of her own composition, dances to her own tune, and sees in ways I will never understand.

And, writing.  Writing is a catharsis.  Perhaps it's equally as narcissistic to write here as to write about my successes in giving praise.  But, hey, whatever works.  I've jumped on this blogging bandwagon about as many times as I've revisited Weight Watchers.  But, that's another post.

and this is the life we were waiting for ...

Tuesday, March 12, 2013

was there a check-box I missed?

Because I don't remember signing up for this.  Or opting out of this.  In fact, I have no recollection whatsoever of being asked if I'd like to sit down one evening with my husband and a child and explain to that little person that they do, in fact, have a learning disability (without once using the words "learning" or "disability").  Yet, that was my yesterday.

My today is also traveling well charted, yet initially unexpected, territory: Will all of my children be able to live independently?  Considering the frequency with which we ask ourselves this question, I'm guessing the answer is "no."  It's the wondering that really wipes the mojo out of me.  In some ways, it could be easier to just know.  Not that I've walked even a yard in these shoes, but I fantasize that someone will look at us and say, "Mr. and Mrs. D, your child will never be able to live without full-time support, and this need will stretch long beyond your bodies' abilities to care for them. It's best to start looking into alternatives now, so you all can be prepared before the time comes."

When folks tell me, "You should write a book!" I wonder what on earth they want me to tell.  For me, the story is how this indulged only child (and grandchild) raised in an all-white South California enclave who managed to succeed in every challenge I ever attempted (except one, that whole conception thing) wound up the parent to three "special" children of a different race … and lived to tell about it -- and, occasionally, thrived at it.  I am not the person, mother, woman, wife, daughter or friend who started this journey seven years ago.  Or, I am, I just hadn't met me yet. That's the story.

There are days where the living-to-tell seems intangible and the thriving a myth.  Today is one of those days.  Today is one of the days I am clear as diamonds that I am not the right parent for this child or these children.  Not enough patience, understanding, energy, intelligence, or perseverance.  I'm tired and cranky and couldn't ad lib my way out of a parking ticket, let alone a conversation with a disconnected child who cannot process all the sensations entering their head minute by second by every single moment.  I try to understand.  Really.  I do.  But it's almost impossible to be completely empathetic with a person who's life experience, who's sensory living, is the polar opposite of my own.  Despite all that I've learned and read and practiced, sometimes the only response I can find is, "I think it's time to go to your room and calm down."  They're safe in their rooms, safer than they'd be if I left them alone while I went to calm down in my own personal space.  At least, that's what I tell myself.

The universe usually speaks to me in these times.  When I was angry and frustrated recently (and alone with the kids on vacation) the manager of a store we frequent went out of her way to tell me how much they appreciate our kids and our family.  The kids, apparently, are better behaved than the average and she just wanted to thank me on behalf of her team.  Moments later I was able to pay the compliment forward: A child walked right up to Big Brother and asked, "What's that stick and why are your eyes closed?"  Not in a mean or teasing way, but clearly in search of information.  BB and I explained it all to him while his mom looked on in that edge-state all parents enter when their child's behavior is bordering on the iffy.  While the other family was still there, I asked BB how he felt about the interaction, and he confirmed that the boy had been polite and not mean, that BB had felt recognized and respected for his difference.  "Nice job, mom" I said to the now beaming mother. 

Tomorrow will likely be a "nice job, mom" kind of day.  But, today isn't.  Today is frustrating and enraging and depressing and I've spent the better part of it beating myself up over not being able to be everything to every one of my kids at every moment.  I think that's the definition of self-inflicted insanity.  And, I'm clear on that.

Clear as diamonds.