The Strain Of Parenting A Child With Special Needs

It may seem obvious that parenting a child with special needs requires more - more time, more patience...just more.  And you'd be right.  It does.  Yet like many children whose needs may be hidden from view, so are the realities facing parents when caring for their child's special needs overtakes all else.

A parent shared with me that her marriage was ending.  The strain of what is often referred to as "exceptional caregiving" tore the fabric of their marriage beyond repair.  The attention their child needed was unrelenting, and attempts to achieve any sense of marital balance was intensified by extended family and friends not understanding their realities.  Battling for their child became all-encompassing, and there was nothing left for them as a couple.

The Realities

While I'd like to say this story is rare, it's not.  Time and time again, parents have shared that they thought their partnership was strong until exceptional caregiving became the central role in their lives.  Maybe there were some small cracks developing early on, but they refused to believe that they couldn't withstand the strain. 

When this new "world order" becomes the daily reality, even the strongest husband and wife can sometimes cope no longer.  It's a complex emotional landscape - denial, remorse, fear, guilt, uncertainty, feelings of helplessness, lost dreams, and even those thoughts that they dare never say.  Why me and why us.

Life Through A New Lens

The entire work and family picture takes on new meaning when a child with autism, ADHD, or mental health issues, for example, becomes the focus... 

  • Career changes.  One parent may no longer be able to work.  A client meeting and an urgent call from school collide, creating work/life conflicts.

  • Financial pressures.  Paying for mounting expenses - often hundreds or thousands of dollars a month - when family income may be halved or when expenses stretch resources to the limit. 

  • Family and siblings.  Balancing the child's continuous needs while tending to other children in the family and handling family questions and comments.

  • "Alone time."  Securing a babysitter or caregiver (including loving grandparents) who understand and can provide non-judgmental assistance is often difficult at best.

Day trips need considerable preparation.

Vacations require extensive planning and tension often results.

Communication issues emerge and quality "couple time" can be rare at best.

Priorities shift.  Plans ended.  The partnership crumbles.

It's no surprise that holding everything together becomes a herculean task, one that not every parent can manage without considerable support and even then, it may become impossible.

Warriors

Every parent parents differently.  And when a child with special needs becomes the cog in the family wheel, parents become warriors, often waging the battle at different levels and in different ways.  Sometimes, even the most valiant parent finds that they can battle no longer.  Losing themselves in the process is commonplace.  Not by design, but by situation.

When a marriage ends, the reality is that each parent must still play a pivotal role - or combination of roles - to help their child.  Case manager, home therapist, scheduler, advocate, first responder.  The assignment of roles may change, but the importance of each parent to the whole does not.

Your efforts and sacrifices, both individually and as parents, matter.  You remain Mom and Dad, needing to work together to help your child.  The strain on a marriage and the emotional fallout for each parent is very real.  And painful.  Yet don't lose sight of all you have done and are continuing to do to help your child move ahead.  For while your struggles like those of your child may be hidden, your rewards most certainly are not.

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Parents, Children, Autism, and Unconditional Love

Let me start by saying that I'm not a psychologist, sociologist, or expert on love.  I am, however, a parent and as such, have filled these roles and many more in the two decades since I went from being "me" to "we." Andrew Solomon's recently posted TED talk - "Love, no matter what" on parenting, children, differences, and unconditional love struck a number of chords.  How we need to embrace our children and their differences and how unconditional love means doing just this.  He spoke of the changes we as a society have undergone in terms of understanding and accepting our gay children, our children with Down's Syndrome, and our children with other differences and disabilities.  And while I agreed with much of his talk, there were two points of fairly strong disagreement, one of which follows.

Solomon stated that parents of children with autism who wish that their children did not have this diagnosis somehow fail the litmus test of unconditional love.  What?  Parents of autistic children don't love their children unconditionally?  Say it wasn't what he said.  But it was.

On my soapbox I climb once again to say... No parents understand the definition of unconditional love like parents of children with autism.

I don't need to revisit again what I've expressed so many times before...the hours, sacrifices, work/life conflicts, financial strain, family upheaval...all the things that define parenting children, teens, and young adults in a world where they struggle at best to meet its demands.  But I do need to ensure that anyone who may not understand why parents would "wish" their children did not have this diagnosis, understands it now.

Parents of autistic children see their children's struggles every day in ways that clinicians, teachers, and others cannot.  They see them from sunrise to sunset.  They know that the weather, clothing, food, sounds, movement, people, activities, environments, and a host of other day-to-day situations create chaos for their children.  Does anyone think these parents may "wish" this wasn't the case for their children?  Does anyone think these parents may "wish" their children had friends?  Could speak?  Could drive?  Live independently?  Work?

If parents of children with autism wish anything, it's that their children did not have these struggles or needs.  They wish for anything - something - to lessen their children's pain.  But the wishing has nothing whatsoever to do with love.  And certainly not unconditional love.  Parents of children with autism *define* unconditional love and epitomize what this truly means.  They could also teach a lesson or two to many other parents as well.

We all wish for things.   For life to be easier.  For money to be more.  For family to be well.  And yes, parents of children with autism do wish for things too.  That their 4th Grader would be invited to a classmate's birthday party.  That their 8th Grader would be asked to be in the science club.  That their 12th Grader would be able to attend college.  But the one wish they don't have is wishing that their children were different so their love for them would then be without restrictions or caveats.

It's this type of unconditional love that keeps parents of children with autism forging ahead, plowing through the difficulties, never taking "no" for an answer, exploring supports wide and far.  If wishing comes into play here at all, it's that these parents wish that their children may have every opportunity to live a life where *their* wishes can come true.  And their shot at doing so rests firmly on the shoulders of their parents who love them unconditionally.

Trust Me...It's A Crisis

I've always struggled with numbers but not this one... From the CDC comes this statistic - 1 in 50 children under the age of 17 holds an autism diagnosis.  Even for me, someone who has worked with parents of children with autism for years and suspected for quite some time that even the most recent statistic of 1 in 88 children was low, seeing this in print was simply startling.

Ask anyone whose life has been touched by autism and they'll tell you that it changes everything.  It strains marriages and finances.  Overwhelms resources and time.  Shifts priorities and plans.  Every day, in every possible way, autism overtakes life and the expression ..."let me count the ways" doesn't even scratch the surface in terms of the impact an autism spectrum disorder has on parents, families and well beyond.  Trust me, I know.

At a time when school budgets are being slashed and families are truly hurting by an aching economy, these numbers equate to a huge wake-up call for those who may have been napping.  The need for early intervention services is critical as the earlier supports and services are secured, the greater likelihood that the child can make and sustain progress.  The need for broader and more complex supports for teens has never been greater with social deficits and bullying defining a huge part of life for high school students.  And the need for college-level support is enormous, as the expectations and freedom that accompany the foray into young adult independence brings with it enormous risks.  Trust me, I know.

Working parents have the greatest challenges and if both parents are employed full-time outside of the home or if it's a single parent household, all bets are off.  Therapies, evaluations, research, school meetings, crisis situations...the strain on working parents and their time, finances, and health are beyond what employers and colleagues understand or even recognize. And as I say ad nauseum...behind every child with an autism spectrum disorder is a parent (or two parents) of a child with an autism spectrum disorder.  Trust me, I know.

Autism is complex and multi-faceted, leaving even the most "on" parents buckling under the strain.   Parents find themselves leaving jobs because any hope of work/life balance is greatly compromised if not impossible.  Parents find themselves on Google at 3 a.m. or spending weekends sifting through books and journals.  Parents find themselves remortgaging their homes, borrowing from family members, and altering their way of life beyond what those on the outside could fathom.   Trust me, I know.

Autism is a crisis.  Plain and simple.  It was a crisis five years ago and is even moreso today.  And while many are researching causes and developing new therapies, the reality is that exploding numbers of children and teens are struggling on this very day from wake-up in the morning to sleep (if sleep even happens) at night, in 2nd Grade and 11th Grade, in public schools and private schools.  And standing behind and beside each of these children is a worn, overwhelmed, frustrated, and confused parent - or two parents - trying in herculean ways to find answers and make things better.  Trust me, I know.

When a crisis hits, people mobilize.  Only in this case, it isn't a natural disaster but rather a national crisis impacting not only families in their own homes, but employers as well.  Employers must offer assistance, whether through flexible work options, funds allocated for an employee to use for therapies, private school, or legal counsel, or employee resource groups so working parents can share information and offer support.  Because even with internet research in the middle of the night, what working parent with an 8 or 14-year-old with Asperger's Syndrome has the time or energy to shoulder more than they already are?  Employers also need to recognize that today's children with an autism spectrum disorder will likely be tomorrow's employees programming their computer system or writing their corporate manual.  And in terms of society, everyone needs to begin to understand autism differently, for many pre-conceived notions from years ago are as outdated as go-go boots and wall telephones.

One in 50 children has autism.  It impacts everyone and is a genuine crisis.  Trust me, I know.

 

 

Sticks And Stones Got It All Wrong

Years ago, I vividly recall telling my son that words hurt as much as, if not more than, a physical action.  This was when he was experiencing daily torment by classmates in school because he was "different" - a book reader, creative, and not into sports.  Even the word different bothered me because it came with baggage that I wanted him to shed. On last night's news, there was a story about a man who ended his life after what appeared to be a lifetime of struggle.  The reporter said that the man "was mentally ill" and all kinds of images came to mind, even for me who has spent years advocating for children/young adults with a range of diagnoses and labels.  I then wondered how people without any frame of reference reacted to this statement vs. how they may have responded if the reporter said... the man "suffered for years with mental illness" or the man "struggled for years with depression."  Perhaps it would have softened - and brought a level of humanity and understanding - to an otherwise tragic situation.

Much attention is being paid these days to three topics - issues of mental health/illness, bullying, and struggles of our youth in the LGBT community - and all for good reasons.  Our mental health system is in shambles and many children, teens, and adults cannot access the services and supports they so desperately need.  Not a day passes when we don't hear about another child who has been and continues to be bullied in school.  And several days ago, I read words written by a student on a college blog about feelings of desperation - and wanting to die - because of being gay and excluded.

Many of our children and young adults are struggling and suffering, the results of which are often devastating for them and others.   Diagnoses and labels are often affixed with little regard for the weight of the words themselves and without the cushion of support needed after these words/terms are affixed.  Autism.  Bipolar.  Gay.  One single word can change everything for a person ... whether they're accepted, included, supported, loved, hired.   Imagine having your life defined by a single word or phrase.

No question ... short snippets of information and catchy terms often help us hook on and remember something.  But many times the thing that helps us remember is also the thing that makes us forget ... that behind the label or term is a person.  A person who may be struggling, trying desperately to overcome obstacles that sometimes even they don't fully understand.

One of the statements I make frequently to parents, educators, and to groups is this ... a diagnosis or label does not "define" but rather it "describes."  A definition is fixed, but a description is fluid and provides more room for explanation and information.  Words can and often do change everything, particularly when the words are facing outward toward another person.  Words also can and do hurt, but they can also explain, empathize, embrace...and heal.  And we need as much healing today as we can get.

Work Or Family...It's All About Relationships

The similarities between workplaces and families are striking. There's the leader or the parent... unproductive staff meetings or holiday gatherings where few people are happy...employees doing more with less or limits on eating out... disengaged employees or family strife with teenagers.

If you really think about it, the one key difference between the workplace and the family is that workplaces pay their employees for the work they do whereas family members pay - in many ways - just for being part of the family.

I just read an article in Forbes entitled "Why Are So Many Employees Disengaged" and the research study cited concludes that the #1 reason is the relationship with the employee's supervisor, costing employers $11 billion annually in employee turnover.  No surprise here, because we know that the attitudes and actions of the person/people at the top frame the experiences of everyone else.  Whether at work or home, it all boils down to the human level or, relationships.

When we look at top workplaces and companies striving for "best places to work" status, we often look at things like professional development, benefits or "perks," or advancement opportunities as the core drivers.  No question these things help keep employees happy and may be easier to measure, but it's the intangibles - often referred to as the softer, "feel good" things - that make for those workplaces and families we'd like to call our own or strive to create.

Relationships are built on people feeling listened to, respected, involved, and appreciated.  It's sustained when everyone feels "part of" and knows - deep down at a personal level - that they're a needed cog in the wheel to move things forward.  It's not surprising at all that the key issue related to disengagement involves the relationships (or lack thereof) of the people who are most closely aligned.  Rather, the question to be asked is what's being done to improve these fractured or non-existent relationships and is it a priority?

The workplace defines what people do.  Families define who people are.  Each revolves around relationships ... more complex and harder to quantify, but enviable if you don't have them and fortunate if you do.  Whether at work or at home, it's the quality of the relationships of the people involved that makes all the difference.   As a proverb says, "No road is long with good company."