On Intelligence

chess challenge

My computer rang with the familiar ding of new mail.  It was the report from the neuropsychologist, a specialist in testing intelligence and academic performance, on my daughter.  No stranger to these types of reports, I opened the file cautiously.  It is never an easy  task to focus on all that one’s child cannot do, which, unfortunately, is a common exercise for the parents of developmentally delayed children. Nevertheless, her scores shook me, and I feared for her future.  Based upon the numbers alone, the outlook for future education and employment seemed nonexistent.

A few days later, I had to tell her her sternly to, “Hurry up!”, during an epically slow morning routine performance.  She looked at me, near tearful, and said, “Mama, please don’t call me dumb.”  It was as if the floor fell from under me as my stomach dropped like the rapid decent of a roller coaster.  I inhaled sharply and said, “I would never call you dumb, sweetheart,  you aren’t dumb.” And, she isn’t.  No test score could ever change that, because tests, like an Intelligence Quotient or IQ test, are but a snapshot in time that measure a very narrow aspect of a human being.  At that moment, I realized the report was not a reason to fear for her future because she is so much more than one report could ever capture.

These are the things an IQ test can’t measure:

Her joy.  I have yet to meet a person as joyful as my daughter.  Her happiness radiates from her like a beacon of light inviting you to join her in her bliss.  For a child who has suffered much in this world, she emanates a warmth and full embodied glee that no test could measure. 

Her sweetness.  She is replete with innocence.  It colors all she looks at with a warm rosy hue.  She is kind and generous.  Her giggle is next to none.  She finds something to love about anyone she meets. It is this happiness that draws people to her.  People want to help her and stand by her side because her contentment is contagious.  No test could ever tell you that.  It is measured by her smile, her warmth, and the number of people who step up to move along in this journey with her.

Her sense of humor.  My kid is funny.  Her goofy, slapstick ways can bring a smile even on the darkest of days. 

Her perseverance.  Since birth, the deck has been stacked against her.  Nevertheless, she persists.  When the tests ask, when did she walk, when did she talk, etc., what they do not ask about is the sheer tenacity it took for my girl to take those first tentative steps at nearly three years old. 

Her problem solving abilities.  If there is something in the house she is not supposed to get (like the Halloween candy), that girl is going to find a way.  She will take any measure necessary, including climbing on precariously stacked items to get what she wants.  She uses the same astute problem solving to navigate her way through a world that isn’t exactly built for her.

Her creativity.  Our girl is prolific with arts and crafts.  She is like a McGuyver.  Give her pipe cleaners, buttons, paint, and pom-poms and she will have a whole village of assorted animals constructed in no time.

Her fantastic memory.  There is nothing that my daughter forgets.  She learns huge amounts of information from sheer memorization.  She once told us if we swallowed gum too often it would make a bezoar in our stomachs.  Who knew?  It’s a real thing.  A bezoar is a big mess of indigestible stuff that gets stuck in your digestive tract.  She knew because she heard it once and memorized it.

These may seem like small things, but they are in fact what give me the most hope for her future.  The truth is that she will always need more help than the average person to navigate this world.  It is also true that there is something about her that is magnetic and draws people to her to help and that magnetism isn’t going anywhere. The IQ test is one tool, one measure, at a moment in time.  It provides informations about certain strengths and weaknesses, and places that need intervention.  It doesn’t define her.  What defines her is so much greater and than a score on a test.

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Dear America Mental Illness is Not the Problem

broken window

Dear America,

Following the most recent mass shootings in Gilroy, CA, El Paso, TX, Dayton, OH, and Brooklyn, NY, there was a renewed focus on mental health. Lawmakers, including the President, implicated mental illness for these acts of hatred and terrorism. Numerous studies that show mental illness accounts for a “relatively small percentage” of violent crimes.  Doctors repeatedly assert that the link between mental illness to mass shootings is unfounded. Nevertheless, politicians and swaths of Americans continue to blame the mentally ill.

Mental illness is a broad spectrum and includes disorders such as depression, anxiety, and schizophrenia.  When you point the finger at the mentally ill, you are looking to one in five Americans.  You include coworkers, friends, neighbors, veterans, and upstanding members of the community in your indictment. The scapegoating conflates mental illness with hatred, indifference towards others, intolerance, and bigotry.

When you are speaking about the mentally ill, you are talking about me.

I am a loving mother, a devoted wife, a PTA parent, a dedicated volunteer, an educational advocate, a writer, a contributing member of my community; and, I am mentally ill. I have suffered in private for more than half my life, afraid to speak openly due to the stigma surrounding mental illness. I can’t afford to be silent any longer. My fellow Americans are dying from mass shootings in record numbers. That is more terrifying than the stigma I face in my announcement. You are talking about me, America, and I will not hide nor internalize the widely held belief that the mentally ill are violent. I can only hope my disclosure will help others.  

Outing myself as mentally ill opens me up to stigma.  As a person with mental illness, I am more likely to experience job discrimination or encounter questions about my parenting abilities.  I am more likely to be seen as unpredictable or potentially violent, just for having disclosed my mental illness. When, in reality, none of this is fact or even based on reliable statistics. As one of the more than 44 million adults who have a mental illness, I am 2.5 times more likely to be a victim of violence than others. Millions of Americans go without the treatment they need due to stigma and lack of mental health resources. I am one of the lucky minority (40%) with mental illness to receive mental health services. Increasing mental health service availability is much needed, but it will not solve the problem of stigma. We are stigmatized, victimized, and scapegoated because America cannot look itself in the mirror. It is this very scapegoating and indifference towards others that is at the heart of the issue.

If it is not the mentally ill as scapegoats, then it is the immigrant, the Muslim, the person of color, the LGBTQ+ person. Indifference, intolerance, and hate are rampant. These are the drivers of violence. As Americans, we are ever more isolated. We retreat to our bubbles of comfort scrolling through our single viewpoint feed. We rail against the other—that with which we do not identify. We invest in blaming others because it is too difficult to acknowledge the seeds of indifference, intolerance, and hate that lie within us. When we blame mental illness, we make the seeds “other than” and reassure ourselves that we are not part of the problem. We erroneously think if we can treat the mentally ill, we can eradicate the threat. Nothing could be further from the truth.  

Until and unless we confront the hatred, intolerance, and indifference that resides in each of us, no matter how small, we will continue to seek scapegoats. We do not want to accept that we may, no matter how seemingly different, have something in common with a mass shooter.  At the root of hatred, intolerance, and indifference is fear. We are being instructed to fear the wrong thing.  When we fear the “other,” the “not me,” it breeds stigma, discrimination, and violence. The cure is to face each other, get curious, reach across the aisle, and learn more from those with whom we hold different viewpoints.

Without each of us stepping up to do our part, confront our fears, and value those who hold different viewpoints, we will never reach a solution. Lawmakers have proposed gun restrictions, background checks, video game reform, expansion of mental health treatment, or a combination of the above as solutions.  Nevertheless, these are only stop-gap measures if we do not confront our ills.  

We must, above all us, learn how to care for one another again; even if we disagree. The rest will follow.

Sincerely, 

A Concerned Citizen 

On Preparing for the Future

child hand in adult hand

“Mama, when I grow up I want to be an astronaut and see the stars.”

“Mama, when I grow up, I want to be a doctor.”

As always, I say, “Yes, sweetie, that’s a great idea.”

The truth is much more complicated.  My daughter’s sweet flights of fancy bring to light a conversation we, as a family, try to avoid: what will adulthood be like for our forever child?

We avoid the conversation, yet act like some things are fact.  There is an unsaid knowing that we will be caring for our medically complex and intellectually disabled daughter in some form for the rest of our lives.  What that will look like over time is uncertain at this time.  There is both sweetness and terror in that statement.  We know her implicitly; we can guess her needs without words; and, we know exactly who to call and how to handle any medical needs that arise.  No one will ever be able to care for her like us.

Nevertheless, we will not live forever. One thing remains, every day is one day closer to the future and adulthood.  This reality is even felt by our seven years old.

“I’m way younger than you and Daddy.  That means you will die way before me, and there will be no one to drive sister around.  Will I have to drive her around to all her appointments and everywhere?” he asked one day.

“Buddy, that is a long way off, and we will always make sure both you and your sister are taken care of even if we are not here.  It will always be your choice if and how you help your sister,” I replied with a heavy heart.

I meant that wholeheartedly, yet daily life is so all-consuming we rarely have time to plan what will come next week nevermind years from now.  We have named guardians for our children in our will, but do not have an actual safety net of long term measures.  It is difficult to look to the future when the present is so all-consuming.  Nevertheless, my mind drifts there when I help her with everyday tasks.

How can I help her learn to become independent and bath herself efficiently?  Dress?  Read fluently enough to understand written directions?  Teach her money so she can make everyday transactions? Learn to use a phone?

The list seems neverending.  The truth is that we cannot teach our daughter all these things on our own.  We cannot plan for the future if we are drowning in the present.  And, we, as a family, cannot progress in the present if we are fearful of the future.  In the famous words of Hagrid in J.K. Rowling’s Harry Potter series, “What’s comin’ will come, an’ we’ll meet it when it does.”  There are ways we can prepare now to achieve success better when the time comes.

  1. Utilize the help available in the present to prepare for the future

The saying goes, “it takes a village to raise a child.” It takes a village of experts to help raise our daughter.  She is young and capable; though it does require the help of experts to teach her the necessary skills for successful independent daily living.  Optimizing the support we receive now increases the likelihood of future success.  Applied Behavioral Analysis (ABA) can help explicitly teach her complicated activities by breaking down tasks and reinforcing success.  Physical therapy, occupational therapy, and speech therapy all augment and increase her abilities to meet the increasing responsibilities of childhood through adulthood.

2.  Hold those charged with teaching her accountable.

Even when we use the resources available, there are times when those charged with helping her on her way to independence fall short.  School is vital to her success and often the most challenging area to get her what she needs.  Teachers are best equipped to help my daughter learn complex tasks such as reading, writing, and math.  Laws are guiding the education of those with disabilities, the Individuals with Disabilities in Education Act (IDEA), section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA) ensure she is given what she needs to learn and progress. We must hold the school to the task and make sure they adhere to their obligations to her based upon said laws.

3.  Maximize her chances of independence with follow-through.

There are times when it is so much easier to do something for your child rather than allowing them to struggle through the task.  This is especially true for children with disabilities.  The time and dedication involved in allowing my daughter to try, even if it will end in her needing my assistance, can be overwhelming.  It is much easier to dress her than to watch her struggle with dressing and use all the techniques taught to us by her ABA therapist, occupational therapist, and physical therapist.  While easier in the short term, it hampers her in the long run.

4.  Have the hard conversations.

“What is comin’ will come,” and we must prepare for it.  The unsaid always seems more daunting than that which is brought to light and explored.  The practical is only half of what must be worked through for the future; the remainder is the feelings that come along with that.  If emotions are not explored now, they will get in the way of any practical plans we make. We cannot imagine what it will feel like for our daughter to be independent or require care from others if we do not discuss it.

5.  Start preparations now by allowing others to help care for her.

We will always be the best caregivers for our daughter.  Even so, a future without us is inevitable.  The more practices both we and she have with others caring for her, the better we all will fair in the long run.  It helps build our daughter’s flexibility and independence to allow others to step in for us.  It also helps our wear with all to have a break in caretaking.

The more we work on actionable steps in the present, the better the future for our entire family.

 

On Caregiver Burnout

photo of person sitting on tree stump near body of water

There are days I cannot imagine the next.  The cost of mothering two complex and fragile human beings feels too great.

My life is ruled by simultaneous schedules and chaos.  I am bone tired and weary; there is little rest.  The mirror betrays me; I do not recognize myself.  Nothing is enjoyable and time marches past my passions and activities of leisure in which I no longer engage.  The ability to maintain friendships evaporates until all that was left of me is the role of caregiver.

And, all this is meant to stay secret.  I must put a mask over my malaise and soldier on–no matter the cost.  There are days when the price is too high and I find myself wishing time would stop and the weight would lift.

This is what caregiver burnout feels like.  It is both a physical and existential threat.  It happens when the role of caregiver consumes the self.  For parental caregivers, it also consumes one’s parenting.  Life becomes about the job of caring for one’s child(ren); one becomes an automaton providing care.

Depression remains a taboo subject as is the similar symptoms that arise from caregiver burnout.  Symptoms include but are not limited to: feelings of sadness, helplessness, or hopelessness; irritability; loss of interest in things that bring joy; sleep disturbances; reduced or increased appetite; trouble thinking or concentrating; unexplained physical complaints; even thoughts of suicide.

It is often more of a taboo for parental caregivers to express these thoughts and feelings because the roles of parent and caregiver are so blurred.  To admit that, at times, caregiving for one’s child feels depleting, hopeless, and grief-ridden is a faux pas; because parenting is supposed to be hard, yet fun, and rewarding.  Moreover, parental caregivers do not want to portray their children as a burden.  We feel overwhelmed to a point that caregiving eclipses the typical experience of parenting.  This in and of itself causes a great feeling of loss and grief.

I can’t survive this way; I don’t think anyone can.

Caregiver burnout is not a failing it is a symptom.  Caregiving cannot happen without the integral parts of one’s self and personality being nurtured; it is about caring both for yourself and the person for whom one cares.   For a parental caregiver, parenting cannot all be about providing care or the parent-child bond suffers.  It is when we neglect ourselves and our many roles as a person that we experience burnout.

I am daughter, sister, wife, friend, mother, caregiver, writer, artist, lover of documentaries and good books, bitingly sarcastic and sometimes funny, silly, caring, kind, compassionate, loving, playful, and more; I am also sad, overwhelmed, uncertain, and fearful.  It is when I get stuck in one part of me or another that I experience burnout.  When I am able to bring little pieces of all my parts into both my parenting and caregiving, I am refreshed.

Self-care is often talked about as the panacea for burnout.  But, self-care is not always some grand, time-consuming thing like a day at the spa, beach, or even a bubbly bath at home (though these are wonderful activities).  Self-care starts with honoring each part of one’s self and making space for those parts amidst all the chaos and responsibilities.

For me, it can be as simple as honoring the artistic part of me and grabbing a few coloring books and the kids to enjoy some coloring.  Or it could be as simple as honoring the playful, silly, and funny parts of me by making faces and sounds while delivering medication.  It is making space for all of one’s beautiful parts to breathe–even the sad and overwhelmed parts.  It is allowing a good cry in the shower; telling a good friend “I’m really overwhelmed” when they ask; or asking for help when it’s needed.*

Today, I made some breathing room for my writer and the day already feels a little brighter.

*If you experience feelings of hopelessness or thoughts of suicide please reach out for help.  The National Suicide Prevention Lifeline can be reached by clicking the link or at 1-800-273-8255.

On Love and Fear in Motherhood

mother and child

He pulled in close to me and nestled his head in the crook of my arm.  These simple displays of affection are some of my most treasured moments in this life.  I am his mother and he is the healthy child I dreamed into existence after the birth of my daughter with a rare genetic disorder.  He is brilliant, exuberant, affectionate, and unapologetically his unique, seven year old, self.

He has healed me and broke me.  And, with his help, I have grown into the authentic and unapologetic mother both my children need.

When he was born, I was a mother with a deep-running crevasse through my soul.  Shattered by the ever growing medical complexities of our daughter, I could not imagine motherhood that was more than survival.  Only 20 months younger than his sister, I was still in shock and grieving the loss of the motherhood I imagined.

My early motherhood was ruled by fear.  The deep and enduring love I had for my children terrified me.  Love is both light and dark–powerfully abiding affection and compelling fear of loss.  I was stuck in the terrifying shadow of loss.  Even his heathy birth did not pull me from the precipice of anxious mothering.  When something rare and devastating happens to one of your children it can seem as though that soul shattering devastation is what one can expect.

When he was an infant, I spent many-a-night stripping him naked and inspecting him for any signs that he might have the same rare disease as his sister.  I did not understand the calm mothers who surrounded me; I could not comprehend why they told me to relax or their gentle reminders that he was healthy.

Yet, as he grew and surpassed milestones his sister was yet to achieve, I realized that mothering in fear was a choice.  Time and fate would march forever onward and nothing I did would change that.  In the meantime, sidled right next to that fear was the warmth and ease of adoration.  I need to choose to appreciate both.

His ease and health healed me.  Then suddenly broke me again as accepting his bounty highlighted my daughter’s loss.  I emerged in the in-between and my motherhood blossomed.  And as time passed, I was continually broken and healed a-new with each passing phase.  When he began speaking sentences, went off to kindergarten, to the day he asked me what would happen when my husband and I die and would he have to take care of his big sister.

As a mother I am fierce, deeply loving, silly, reserved, playful, regimented, anxious, confident, unapologetic, fearful, and resilient.

I am the mother I am because of all that my children have gifted me.

 

 

 

On the Becoming of Motherhood

woman standing on rocky shore during day

She is like the ocean–soft and powerful.  Her moods come in waves, alternately lappingly playful and ferociously destructive.  She is strong and resilient with a hidden undertow.  And I am her steadfast shore–velvety sand and sturdy rock.  Her waters shape me.  Conversely my topography affects her.  We are symbiotic and occasionally at odds.

***

Motherhood is about becoming.  One can imagine the type of mother she will be and yet mothers must be made.  They are born the day one starts her relationship with her child–be it in the womb or when the child is gifted to a mother through adoption.

She made me a mother.

The day she was born I did not know if she would cry; the doctors were not sure either.  She had tumors in her heart, likely some in her brain, and perhaps even her kidneys.  My sweet baby girl was handed to me with a rare genetic disorder. I knitted her together with this disorder in the waters of my womb.  A disorder marked by benign tumors in her vital organs, epilepsy, autism, developmental delay, behavioral issues, and more.  My motherhood made by both her and her disease.

When I dreamt of motherhood I imagined myself enjoying sweet infant snuggles, playful and challenging toddlerhood, all the way to dancing at her wedding.  I did not imagine hospital monitors, multiple medications, seizures, early intervention.  My girl has always been beautiful, life-giving, and free as the ocean and equally as unpredictable.  Motherhood is unpredictable no matter one’s imaginings.  This is why mothers are created.  There is a beauty and sadness in this–a loss of one’s imaginings of the mother one might be and an exquisite becoming into reality.

One tends to think of mothering one’s children into who they will become not of becoming herself.  The reality is our children make us as much as we make them.  They are born into this world their own beings who exist within themselves just as we existed before them with our own traits and qualities.  Motherhood is about loving, nurturing, and honoring who your child is no matter what–disease, disability, difference, sexual orientation, etc.  That loving, nurturing, and honoring is what shapes us–the relationship between the waters of the ocean and the steadfast shore.  In turn our motherhood changes who we are as a person.

I am continually becoming.