Hurray…It’s Working Parents Day

I don’t know about you, but I’ve been waiting all year for today.  One day dedicated to recognizing the people who “bring home the bacon, fry it up in a pan.”  Only this isn’t a line from an old TV commercial about women but a reality about *every* working parent.  The people who spend their days (or nights) generating an income for baby clothes, school supplies, dance lessons, pediatrician visits, braces, school trips, and the millions of other expenses that it takes to raise their children to adulthood.  And with adulthood coming later and later, often well *into* adulthood as well.

I don’t know about you, but Working Parents Day should be celebrated every day.  It isn’t enough and certainly minimizes the herculean job of working parents who are trying to balance – or as I prefer – integrate two competing roles and responsibilities.  They often say that unless you’re in it, you don’t get it, yet every working parent knows the juggling act required.  Some days work and others are nightmares.  Some days are all about putting out fires at work and at home.  Some days, a 10-minute bathroom break no matter where it may be is likely the only break possible until they fall into bed for a few hours of sleep before it starts all over again.

I don’t know about you, but working parents are the people in our society who deserve the kudos…and more.  They are keeping businesses in business while raising the next generation leading us into the future.  They’re meeting deadlines and making clients happy while making sure that their children are educated, safe, and have a decent breakfast every day.  No combination of jobs or roles is harder or more significant.

So while I don’t know about you, what I do know is that every working parent — married or single, white or blue collar, working days or night shift, raising children with or without special needs…every working parent deserves more than a day.  They deserve support, recognition, decent wages, flexible work hours, paid family leave, affordable child care, support for their child’s education, the ability to step off and step back, and genuine appreciation for a job well done each and every single day.

Business leaders need to stop and consider just where their businesses would be without working parents.  They need to recognize that some working parents need more flexibility and others need specific benefits.  They need to understand that working parents are working hard to be “top performers” yet sometimes the push/pull requires difficult choices.  And they should never forget that the child who needs Mom at home for two days due to the flu or the teen who wants Dad to visit colleges with them are the same people who will be filling the roles in their businesses tomorrow.  So hurray for Working Parents Day.  As far as I’m concerned, it’s 365 days a year.

SIDE NOTE:  My blog is moving to our website — http://www.Education-Navigation.com — shortly so please visit me there.  I welcome your comments and more…

 

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.

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.

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.

When One Small Step Is Anything But Small

People tend to believe that it’s the big things in life that have the most significance, but I don’t necessarily agree.  Small things often make the greatest impact, and one group of people know exactly what I mean.

If you’re the parent of a typical child, there are so many “firsts” and accomplishments that the small steps often get lost in the shuffle.  Not so for parents of children with an autism spectrum disorder.  For these parents, life is all about watching for the smallest possible step.  About knowing the minutes, days, and months of effort that went into making this step happen.  It’s often only those closest to the child who can understand and appreciate what this is all about.

Ever sit and watch a flower bloom?  You rarely see anything, but look away for a day and the changes are often amazing.  Parents of children with autism spend much of their lives closely watching for that bloom to happen … for that “one thing”, that small step that will show them that their child is learning to speak, respond, play, understand.  And they see it when it happens.

This past week, I spoke with a parent who was sharing how her child was finally able to tolerate something that had been – up to that point – intolerable.  For most parents, this would have been seen as a “get over it” moment, but not for this parent.  It was a huge obstacle that impacted her child’s ability to function and the family’s ability to function as well.  Anyone who would say that a small step isn’t a major milestone is someone whose life hasn’t been touched by autism.

Think about it this way…most people stand back and look at life like admiring a huge mural painted on the side of a building.  But for parents of children with autism, they’re standing right up close, seeing every single stroke of the brush.  When your child struggles on a daily basis in a world that assaults their senses and challenges their abilities, every step forward is anything but small.  These parents know what they’re looking for and even if they don’t, they still see when something changes or some progress is made.  That’s because they’re always looking and hoping for it.

That infamous line…”One small step for man, one giant leap for mankind” are words that ring true for each and every parent of a child with autism.  Every small step their child makes is a leap indeed, for it paves the way for a future of possibilities.  And possibility is that wonderful thing that keeps parents moving forward.

Life is about giving and receiving and I don’t know any single group of individuals who give more than parents of children with autism.  So isn’t it wonderful that one of the things they receive is the ability to see these small steps happen right before their eyes?  Whoever said that you can’t watch a flower bloom never knew what they were looking for.