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…

 

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Autism Isn’t A Day Or Month

I’m a big supporter of raising awareness of causes and issues, encouraging people to rally to bring about change.  Yet when it comes to autism, a day or a month simply won’t suffice.

On various media outlets over the past few days, individuals have been sharing their insights into the realities of autism.  Some were identified as “experts” which, in my opinion, is a term that needs to be affixed carefully.  There was one – a mother – who spoke about raising her child with autism, sharing the realities with an emotional overlay that was as real as it gets.  This is the true expert.

Two of the other expert perspectives in particular stood out to me, each warranting a response and further discussion.  And while there may be those who might question from where I am gleaning my insights or upon what soapbox I’m standing, I’ll say that after spending 15+ years in the trenches in this arena both professionally and personally, I’ll take my chances.

One of the experts I’m referencing stated that parents need to push for services for their children.  Absolutely true.  Could not agree more nor cannot overemphasize the importance of parents taking charge in this regard.  Yet there was, and continues to be, a critical oversight here and one that is consistently overlooked.  It’s that parents need to learn *how* to push for services for their children, particularly in school where the lion’s share of these services need to be accessed.

There is an assumption, and a misplaced one at that, that parents automatically or miraculously acquire these skills … that somehow these skills simply appear after their child receives an autism spectrum diagnosis.  And this assumption even occurs with parents themselves who, in their jobs or professions, may have skills that they “assume” will transfer to parent advocacy and school interactions, but sadly do not.

Just like the social skills/social thinking that their children need to learn through direct instruction, parents also need to be taught how to navigate through the educational arena in order to secure the services that experts continue to state (and parents know) their children need.  And need now.  I often say that special education requires a master’s level of skills that continue to evolve over time.  Telling parents that they need to work hard over the long haul to get their children what they need is one thing.  Teaching them how to do so is another thing entirely.

The other expert on a different media outlet stated that as children reach high school, they need to learn life skills.  What?  As they reach high school?  Ever hear the expression “too little, too late?”  Here’s what’s wrong with this statement.

Part 1 — we first need to acknowledge that there’s a stigma attached to the phrase “life skills” so we need to rename it.  Parents (and others) equate it with things that, for many children on the autism spectrum including those with Asperger’s Syndrome, simply do not apply.  But there’s another huge bucket of life skills that they most definitely *do* need to learn (and be taught) in order to have any hope of successfully transitioning after high school graduation into college, employment, or independent living.  Once we eliminate the barriers created by the words “life skills” and broaden what it means, we can then begin to ensure that these skills are taught starting in preschool…and for all children.

Part 2 — when the teen reaches high school, it’s far too late to start thinking about the “life skills” they will need to transition into the adult world.  Even though transition planning is now supposed to begin at age 14, most schools pay little attention to the skills our children need to live as adults in the world.  We don’t start to teach reading when the child is 12 years old, so why would we wait until the child is a teen to begin teaching these critical skills?  Skills that are considered “life skills” need to hold equal weight with academic skills in terms of their importance.  And for some children, they’re even more important.  This isn’t an either/or scenario and parents should not be forced to choose (and this happens frequently) between helping their child improve their reading level or how to complete a job application or to live with a roommate in college.

The attention to autism this month and any month helps to raise the volume of discussion about a diagnosis impacting families, businesses, and our society.  And whether you believe the recent CDC stats or not, the reality is that there are millions of children and teens today with an autism spectrum diagnosis growing up to become part of our adult world.  As future employees, tomorrow’s college students, and the next generation of parents themselves.

Examining how we’re approaching autism is not an easy topic nor task, but real change is never easy.  What it does require is for us to honestly assess whether we’re providing parents with what they need to effectively help their children succeed in school and beyond.  And it also requires us to closely examine whether we’re truly doing what we need to do to help our children reach adulthood as prepared as possible.  This requires more than a day or month.  It requires a lifetime.

 

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.

It’s All About Having Choices

Walk down the aisle of the supermarket and what do you see?  Choices.  More corn flakes, types of ice cream, and varieties of toilet paper than anyone needs.  Yet it’s there…choices.  The reasons (and this isn’t a marketing discussion) involve wanting to target and satisfy various preferences since not everyone eats whole wheat bread or wants shredded cheese.  So why all the fighting about education?

Listened to another discussion on MSNBC yesterday about public education.  Education Nation is one of their signature features and I applaud them (and everyone) who places education at the top of the list.  Yet what I seem to keep hearing is that public education is *the* way – that it’s the only type of education that deserves our attention, funding, and resources.  The hard work being done to turn the tide in our struggling public schools is no different than the work being done in charter or alternative schools.  Each are working to meet the education needs of our children, albeit differently.  So if “choice” defines our society, why is education any different?  What makes public education better than any other education option and, as importantly, shouldn’t the choices parents exercise in this regard receive equal attention – and respect – for the work they, too, are doing to educate our children?

I understand the premise of public education and indeed there are many districts, schools, and teachers doing a terrific job of educating our children in these settings.  But just like soy products and scented detergent aren’t right for everyone, the same applies to education.  School isn’t a one-size-fits-all issue and this certainly applies when we talk about, for example, the types of instruction and environment within which education occurs.  Children have different learning styles and function better in certain settings when their individual needs are met.  And in order to meet them, there have to be choices.  Otherwise, it’s the old “trying to fit a square peg in a round hole” adage still at work.

There are kids who thrive in large public schools yet there are others who find success in smaller charter schools.  There are parents who choose religious education for their children and others who would opt for private school if provided with this option.   Each option is worthy of our attention and support because if it was your child struggling in their current educational placement, wouldn’t you want viable choices to evaluate?  I know I did.  The point is that today, education is not one thing but rather a spectrum of options.  The days of school equating to all children attending their local public school are over.  And thankfully so.

If the goal is to satisfy the need for our children to learn and if the reality is that every child learns differently, choice must be part of the discussion.  And if the reality is that environment is a key factor to a child’s ability to learn, then it follows that having choices vs. assuming that public school – or any option – is *the* answer is the only way.  Thirty years ago, the choices available for parents in evaluating school options for their children were slim at best; today we have a range of options, making for a far richer “shopping” experience.

The bottom-line goal is to help ensure that every child has the opportunity to succeed in school.  And because we define success differently for everyone, we must define education similarly as well.  My support for education runs broad and deep in all its forms, yet I equally support the word that needs to follow it…choice.

 

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.

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.