Working Caregiving Parents Need Time

Working parents with Special education Special needs children including Autism ADHD Learning disabilities  Employee benefits Employee assistance Employee support Voluntary benefits. 504 Plan, IEP Program

Working parents are handling two jobs - their work and their children, a full plate for almost every parent.  Add an 8-year-old with autism, an 11-year-old with a learning disability, or a 17-year-old with depression and the work/life needs are often insurmountable. 

There's all the "typical" parenting responsibilities, which are often anything but typical, plus another layer of needs ranging from facilitating their child’s services and supports to managing ongoing school issues; it's a life of complexities that few understand and are often managed without help.

The Gift of Time

Respite care, or having an hour to themselves, is one of the most important ways parent caregivers can continue doing what they do.  That saying about putting on your own oxygen mask before you can help another definitely holds true here.  Yet there's often no one to help these working parents even reach for their mask no less give them a few minutes to breathe. 

The Caregiver Action Network has information that provides resources to help working caregivers which applies to exceptional caregiving for children as well as aging parents.  And many are handling both - caring for a child with special needs and for an aging parent as well. 

If someone in your life is dealing with these issues, the best way you can show them you're aware and care is with the gift of time.  It can be an hour to shower or time to take a walk.  Or simply to have some quiet time to try to regroup and refresh.  Don't wait for them to ask or for a crisis to arise.  Having a little "me" time can make all the difference.

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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Permission Granted

Here's how I see it...there are three types of people - those who ask for permission, those who don't and just back away from whatever it is, and those who just do and deal with the consequences later. The "typecasting" typically starts in childhood - e.g. asking to stay up past 9:00 or just doing it and dealing with the parental wrath later.  We were taught that the act of asking shows good manners and respect for the other person, and we teach the same to our kids as what parent doesn't want their child to be considered well-mannered and respectful.  Yet here's the thing ... the "real lesson" is giving the *permission* to ask.  It's the step that precedes "ask and ye shall receive" because if you don't know it's okay to ask, many simply don't.

Believe it or not, there are millions of parents who are reluctant to ask their child's teacher (or principal or IEP team members) the questions that fall into the "5W's" category:  Who is bullying my son at lunch; what is being done to help my daughter develop her organizational skills; where is my child's aide during transitions when problems are continuing to occur; when will we receive the data being collected; why is my son still reading well below grade level.  And we haven't even touched on the "h" question - how are you going to help my child learn social skills or how is it that my child's IEP goals are repeated from year to year.  All questions that parents *must* ask, yet far too many appear to be hindered by the asking process because they are waiting for permission to do so.

Some of the reluctance to ask comes from fear... of questioning the "experts"...of retaliation...of being labeled one of "those parents".  Yet fear is not a good enough reason not to ask, and certainly not when your child is struggling in school.  Asking is the conduit to information and it is - or needs to become - an ongoing activity.  This is one area - and time - where parents need to stop worrying about how they'll be perceived and start realizing that their job is to ask...and to keep asking.

So consider this the blanket "green light" to ask...for answers, information, explanations, data, reports...whatever it is that you need.  And if you're not sure exactly what you need, ask for everything involving your child - records, work samples, charts...everything.  Because here's the reality...I guarantee that when a parent walks out of a physician's office after hearing their child has autism or a reading evaluator's office with a diagnosis of dyslexia, one of the first "out-of-the-gate" responses (after possibly shock) is to ask...everything.   There's no difference when it comes to school.

The only way a parent can truly become an advocate for their child and the "true expert" about what's happening in school is to ask...and ask often.  And the path to asking begins with having the permission to do so.  Permission granted.

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.

Working Parents -- Start Asking The Tough Questions In School

Why are people so afraid to ask questions?  Okay, let me rephrase...why are parents so afraid to ask questions?  Is it because they don't know the questions to ask, don't want to hear the answers, or are reluctant to question people with expertise they may not have?

This question isn't being posed as something simply to consider, but is being directed in particular to working parents with a child who is struggling in school.  The fact is that while most are truly desperate for knowledge, many are reluctant to open the door to access answers.  But before you say, "Hey...I ask plenty of questions," allow me to elaborate.

WHY THE HESITATION?

If you're a working parent, you're already up to your neck with work/life challenges, particularly if you have a child with, for example, Asperger's Syndrome or a learning disability.  You're struggling to figure out what to do (i.e. what interventions or therapies are appropriate), who should do it (i.e. should you push for these services in school or secure them privately), and how to balance it all (i.e. workplace demands and family responsibilities).  It's a boatload of pressure any way you slice it.

But here's where the "questions" issue comes to a head.  Too many of you are reluctant to ask the psychologist who just completed your child's comprehensive testing to explain the results and data in "lay language" so you can understand it.  A 35-page report and you can't decipher much of it.  You're reluctant to ask your child's tutor (who you're paying for) to show you exactly what skills are being addressed.  You're hesitant to ask your child's teacher for data to support progress or to question things during your child's IEP meeting that are unclear or not making sense.  And if you are asking, you're not asking the questions to yield the information you need.

Questions are not being asked when answers are needed most.  Often times, it's because you see these people as "the experts," therefore it would be wrong, disrespectful, insulting, etc. to question them.  But isn't this precisely what's needed?  And aren't they asking you questions that may make you uncomfortable or push your boundaries?  What's truly puzzling is this -- if you take a similar scenario into the business arena, you are likely fine with asking all kinds of questions and your hesitation to ask is minimal.

I'd like to suggest something here -- that you begin to approach your child's education like you do your work.  In other words, ask yourself whether you're getting a return on your investment.  Is your time (often measured by the hours you're spending away from work handling your child's needs or perhaps reducing your work schedule entirely) and your resources (tapping into savings or borrowing from family) yielding positive results?  If you don't know the answer, you're not asking the tough questions.

Working parents who have children with special needs are mired in a "life mural" that requires unmatched work/life balance strategies.  Confusion and feeling overwhelmed is commonplace.  So what's the solution?  Asking the tough questions of "the experts" and expecting clear answers.  And continuing to ask questions if things remain unclear.  This approach yields powerful results ... and isn't this exactly what you're looking for?