The Strain Of Parenting A Child With Special Needs

It may seem pretty obvious that parenting a child with special needs requires more – more time, more patience…just more.  And you’d be right – it does.  Yet as is the case with many children and teens whose special needs are hidden, so too are the realities facing parents when this exceptional caregiving becomes front and center.  Hidden from the outside world perhaps, but not from their own view.

Late last night, I spent time speaking with a parent who shared with me that their marriage was ending.  Weeks, months, and years of focus on their child tore the fabric of their marriage beyond possible repair.  The attention their child needed was unrelenting and their attempts to achieve any sense of normalcy (a word I dislike) was intensified by extended family and friends not “getting it.”  Battling for their child became battling for themselves as well.

While I’d like to say this story is rare, it’s not.  Time and time again I’ve heard from parents who thought their partnership was strong – and indeed it likely was before a child whose needs overtook all else became the central role in their lives.  They may have seen the cracks starting to develop but refused – for good reason – to believe that they couldn’t withstand the strain.  Yet when faced with the harsh realities, even the strongest husband and wife can sometimes no longer cope…with their denial, remorse, fear, guilt, uncertainty, feelings of helplessness, lost dreams, and even those thoughts that they dare never say.  Why me and why us.

Financial pressures to pay for services and supports their child needs – often hundreds and thousands of dollars a month.  The inability to have “time alone” – securing a babysitter or caregiver who understands autism is impossible.  Few if any day trips or extended vacations with friends or family – if they do happen, it’s not without much planning, tension, and often times issues.  Family life becomes difficult – from therapists in the home to the child’s behavioral issues from morning to night.  Changes in careers – one parent can no longer work outside of the home because of the child’s needs yet the bills continue to mount.   Work/life stressors – a work deadline conflicts with an urgent call from school.  Communications issues – who has time to talk anymore.  Lack of intimacy – too tired.  Shifting priorities.  Plans ended.  The partnership crumbles, sometimes beyond fixing.  No surprise to the millions of parents struggling to hold everything together.

I’ve said it before and will say it again … parenting a child with special needs is herculean parenting.  It stresses and strains every area of life and the impact is often far-reaching and beyond the view of many.  Yet the toll is very real and intensifies when a marriage ends.  And because very often one of the parents becomes the warrior solely focused on the child (because they *have* to be), they often lose themselves in the process.  And by losing themselves, the “us” is often lost as well.  Not by design, but rather by situation.

So my message, while it may be only words, is this – the role every parent of a child with special needs plays is beyond description and definition.  It’s parent/coach/guide/role model/teacher/protector/therapist/case manager/facilitator/advocate/strategist…and a host of other titles all in one.  Your efforts, sacrifices, and yes, pain is for one reason – to help your child achieve success and independence.  And while there may be painful losses in the process, don’t lose sight of all you have done and are continuing to do to help your child move ahead.  For while your struggles may be hidden, your rewards most certainly are not.

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Independence…A Day Or A Life

July 4th…a day commemorating our independence.  Most of us never think about our independence because we typically just make our own choices and do as we please.  We take for granted that we can go here and there, do this and that … all at will.

But if you think about the definition of independence as it applies to children with autism and other diagnoses  – not relying on another or others for aid or support – the word suddenly takes on a whole new meaning.   And while independence is defined differently for every child, the process of working toward this goal remains the same.  It’s called hard work, never saying quit, and keeping your eyes firmly on the prize.

Not every child will reach the plateau of total independence (true for children without a diagnosis as well).  But, do you know how many children have been – and still are – thought to lack the ability to *be* independent at any level because of an obstacle and barrier (i.e. their diagnosis) that others believe precludes achieving this goal?  And do you know how many have proven these people wrong?

For many, independence is celebrated as a day with family barbeques and fireworks.  For many others, it’s a life goal that often starts in childhood, continuing through adolescence and right into young adulthood.  It’s what parents “in the trenches” are fighting for every day, refusing to relent to the labels or naysayers who seem to know what the future holds.  They don’t.

For the millions of children (and their parents) who are striving to achieve the milestone of independence, think of tomorrow as a celebration of you and everything you’re working so hard to achieve.  Nothing worth achieving comes without true effort and you continuously show the rest of the world what this is truly all about.

Required, Desired…Enough With Semantics. It’s Needed

I know…school’s out so who wants to think about it right now.  But here’s the thing – there’s a situation impacting millions of children and their ability to succeed in school.  And the implications go beyond high school graduation.  Many parents understand it, yet many are struggling to get beyond it.

Decisions are being made by schools every day about whether a child should receive “x” service or support that they clearly need based upon whether someone believes it’s “required” or “desired.”   And I’m not talking here about what special education laws or IEPs dictate.

Let’s take tutoring over the summer, for example, when a child is struggling with reading.  Many schools (but not all) would say that it’s required because they’re accountable, particularly if the child has an IEP, for helping the child read at grade level.  So many schools provide this support.  Now let’s look at social issues – e.g. the ability to have a conversation with a peer or the ability to interpret non-verbal cues.  Many would say that this is less of a necessity (i.e. it’s not required) so no need to address it over the summer…or even during the school year.

Not a week goes by when a parent doesn’t ask me this question – “Can we put social skills on our child’s IEP?”   Somehow the message that academics are the only thing that matters remains pervasive even though anyone would say that living in a social world requires social skills and understanding.  It seems as though being able to read a college syllabus (certainly important) trumps being able to work on a team.  Since when?

We tend to categorize things in order to prioritize them – the basics before the flourishes.  The problem here is that the scale of priorities is painfully out of whack.  Schools are making decisions about what they believe are the “must have” vs.  “nice to have” skills with little grasp of the long-term ramifications of *not* developing skills that they see as less than critical.

Ranking academics above other skills using a “required or desired” model is failing students miserably, as it ignores the needs of many children in their quest for success in school and beyond.  And when a parent asks if social skills can be included on their child’s IEP, it conveys plenty about the information they lack or the misinformation they’re receiving.

I doubt that anyone would want a child to be unable to meet tomorrow’s expectations in college or on the job because those who weren’t looking or thinking ahead decided what was required.  Parents know, yet they are often ignored when these critical decisions are made.

Many struggling children grow into struggling adults.  And if the purpose of school is to prepare children for adulthood, we’re failing them in this regard.  Forget the semantics.  If we want our struggling children to be ready to transition out of high school and into the “real world,”  it’s time to see their needs today and plan for tomorrow.

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.

The Toughest Part Of This Job

What’s the toughest part of your job?   Dealing with difficult clients?  Working with an annoying colleague?  The daily commute?  Everyone has something that makes them want to scream…or run.

Parenting is no different.  It’s tough but incredibly rewarding.  It takes everything out of you but adds so much to you.  Raising another human being takes skill, wisdom, and a dash of “moxie.”  Yet for some parents, the things that many parents might typically say are the tough things are actually quite manageable compared to what these other parents deal with regularly.

These are the parents who welcome strangers into their homes to teach skills and challenge their young children for hours every day.  Who juggle weekly appointments and therapies often along with another full-time job.  Who clean out their 401K’s and bank accounts to pay for all kinds of interventions.  Who have to make advance preparations for something as routine as a trip to the supermarket.  It’s herculean parenting for sure, but believe it or not, these aren’t the things that make this job tough.

What makes this job tough for parents of children or teenagers with Asperger’s Syndrome is the level of awareness needed – and subsequent “work” required – when something happens involving someone *else* with Asperger’s.  It’s called “antennae up” while trying to explain to people (those who want to know and will listen) what this diagnosis means while earnestly trying to protect their children from people who know little but believe they know it all.

I just learned about an incident involving an adolescent with Asperger’s who was involved in the death of her parent.  Not the first time a tragedy has been associated – whether directly or otherwise – with this diagnosis.  Sad situation for sure, but for the other children with the same diagnosis who attend the same school as this teenager … whose parents know each other … and where others know or suspect which other children have this diagnosis, it’s life in alert mode.  People are talking.  They’re making assumptions.  And drawing conclusions.  And more often than not, it’s all wrong.

We group people together all the time.  All seniors wear cap and gowns.  Computer programmers are smart.  People from California love the beach.  We make assumptions based on preconceived factors moreso than on proven ones.  Or we do it just because it’s what we “think” vs. what we know.  Yet here are the problems with it all…

  1. Categorizing people is risky at best and discriminatory at worst.
  2. It assumes things that cannot nor should not be assumed.
  3. And without proven data, it lumps everyone in any category together, eliminating the fact that every person, with or without a diagnosis, is an individual.

Sure there may be similarities in certain situations – e.g. children with ADHD may have trouble focusing.  But not *every* child or teen has the same issues because they hold a similar diagnosis.   And a diagnosis alone does not mean that certain situations will develop or happen *because* of the diagnosis.

Parents of children with Asperger’s Syndrome know that their children face a daily world ripe with social situations and expectations that may be beyond their understanding or reach.  They also know that their children are bright, sensitive, creative, and move on to achieve in the worlds of academia, business, and beyond.  Descriptions may help to bring understanding, but I don’t know a single parent who would want to “define” their child by their looks, size, GPA, or diagnosis.  Parenting is tough enough.  Why make it tougher.

What Exactly Are We Measuring?

Last week, I came upon the Wired Business Conference during some late-night channel surfing.  I likely would have kept surfing yet there sat Marissa Mayer (a la Yahoo) speaking with a journalist during a sit-down interview.

While I clearly tuned in midway through the conversation, it was time enough to hear at least part of a discussion about her decision to end telecommuting for employees.  Yes, I know this issue has been discussed ad nauseum, but bear with me for a minute.

Stating yet again that it was the right decision for Yahoo and that the response from employees has been positive (sorry…but I’d like to see the data on this), she said:

“People are more productive when they work alone, but more collaborative and innovate when they work together.”

I sat up and said aloud, “What did she say?”  Doing some verbal mediation, I said aloud, wait…people are “more productive” when they work alone?  That sounds a lot like telecommuting to me, I thought, so if the goal in business is to measure productivity, doesn’t her decision then run counterintuitive to the goal?

Yes, I know innovation and creativity are the driving forces behind everything new…ideas, processes, systems.  Yet if a business is framing their operations on, let’s say, innovation, and people are developing all kinds of great ideas, how then does productivity against these new ideas occur?

It seems to me that business – including Yahoo – needs to clearly define how they are measuring success and then how they plan to achieve it.  There’s no question that many teams, by pooling their thinking and expertise, create innovation every day in the workplace.  There’s also no question that bringing that innovation into practice – the real, daily work – is often best achieved by individuals having the flexibility to do the work where they wish and without many of the “traditional” constraints that some organizations still seem to believe are applicable today.

The business world, and the people who comprise it, are far different today than they were 25 years ago.  Technology allows for productivity (and creativity) to occur anywhere and anytime.  It allows someone sitting in a coffee shop to figure out a solution to a problem or someone quietly sitting in their living room after their toddler is in for a nap to develop a new process.

It’s wrong and backward-facing to assume that innovation can only occur, or occurs best, when people are face-to-face.  Not only are there practical concerns including commuting, costs for childcare, and a host of other factors that create issues for employees, but many people struggle in a socially-charged work environment where their creativity and productivity suffer.  Distractions, personality conflicts, and environmental issues are just part of the challenges often overlooked.

Organizations need to not only recognize how innovation, creativity, and productivity really occur, but to understand that a diverse workforce means that a “one size fits all” approach simply doesn’t work.   Every business uses a different yardstick to measure success, yet I would venture to say that each uses their bottom-line to determine whether results are being achieved.

Every business has pain.  Something that’s not working, something that needs assessing, something that needs to be changed.  And it takes leadership (and guts) to institute change.  But stating in one breath that employees are more productive working alone yet in the next breath that no…they can no longer do so, does little to ease the pain.

A creative idea is only as good as its execution, and execution requires productivity…and flexibility.  So maybe Yahoo should be providing employees with the option to create together, not only at the office but at a local diner or in someone’s dining room – and to allow them to produce alone if they so choose.  Measuring business success takes far more than glaring at the bottom-line and watching the numbers climb upward … it takes understanding just who gets them there and how.

 

Snap Out Of It…

I love this line from the film “Moonstruck,” when Cher tells Nicholas Cage to snap out of it after he says he loves her (she is planning to marry his brother).  It’s a favorite that I often use when a particular topic arises.

The topic is labels and let me first say this…no one likes to be labeled anything.  Labels are restrictive and create barriers.  They convey things to others that are often incorrect and can be discriminatory.  But…they can also open doors and create avenues that may otherwise not be available to pursue.  And they also help to bring explanations and reason to things that may truly need clarity.

All this to say, it always confounds me when I hear a parent say that they know their child is struggling yet don’t want to have them evaluated.  My initial reaction is to empathize, saying that I understand that finding out “why” can be scary and overwhelming.  It taps into fears of the unknown, of what we may *think* we know about something, and of what finding out will really mean.  But it takes less than 10 seconds to move from an empathetic reaction to a “snap out of it” response mode.

No parent wants to think or be told that their child has autism.  Or is bipolar.  Or has ADHD.  What parent would ever want their child to be “labeled” no less to face the reality that others will know about it too.  What parent would wish therapies or being pulled out of class for support on their child.  None.  But parents who resist or refuse to “face the music” need to realize a few facts:

  1. They need to separate their own preconceived notions and “what if’s” from the realities facing their child.
  2. They need to recognize that every day, week, and month of delay is precious time wasted.
  3. They need to understand that the label is essential to securing the supports and services the child may need in school…and beyond.

When I hear a parent express their concerns, I ask whether they prefer speculation or knowing.  Whether the status quo is working.  Whether their child is on a trajectory of success or failure.  Of *course* every parent wants their child to be healthy and happy.  To get good grades, make friends, and be successful in the world.  These are foundational desires all parents share.

Yet many children have been struggling for years, taking a huge toll on the child in immeasurable ways.  Repeated “F’s” on tests can be seen (and can be devastating to the child), but it’s the things out of view – the sense of failure, of not feeling smart, of always having difficulties – these are the things that can take away a child’s desire to even try anymore.  And it doesn’t matter if the child is in 3rd Grade or is 15-years-old; feelings of despair accumulate and struggling saps the drive and hope for a better tomorrow out of the youngest of children.

Do parents who resist an evaluation and “label” think that the struggling is going to stop at will?  That the child is intentionally failing math, purposely not making friends, or planning to have behavioral issues in school?  Of course not.  And this is where the “snap out of it” message needs to be said…and heard.

It is incumbent upon parents of children for whom struggling defines their existence to put their own fears aside and mobilize.  With the end of the school year upon us, summer is the time to secure an evaluation and to plan for how to make things better in September and beyond. Yes, this may mean special education services, frequent meetings with school, and involvement of private clinicians and outside experts.  But which vision do you choose…pretending the issues don’t exist, hoping they’ll just go away with time, or telling your child that you’re now “on the case” and that things are going to improve?

A label is words.  Dyslexia.  ADD.  Asperger’s Syndrome.  They only have power if parents allow them to.  These words are also doorways to answers and strategies that will move the needle from failure to success, defined differently for every child.

If you happen to be one of the parents who have allowed your own fears to override getting the information – and diagnosis – your child needs, please…snap out of it.  Your child is depending upon you to do so.