No Means No…Or Does It?

We all know that “no means no” and we play by that rule.  But, is there ever a need or reason to push back against the answer no?  In one critical area, yes.

Ask any parent of a child in special education and they’ll tell you just how many times they’ve heard the word no – or countless variations of the same – to requests, suggestions, and even demands made for something their child needs in school.  It could be an extra speech therapy session to work on social language skills or an aide to enable a bright child with Asperger’s Syndrome to be fully included in school.  Maybe it’s an alternative environment for lunch or a sensory integration evaluation.  No matter the “ask,” the answer is often no.  But the story doesn’t end here.

Over the past week, I’ve spoken with many parents who have expressed their total frustration with their child’s school and IEP team.  This isn’t to say that there aren’t success stories where things are going well.  But far too often, this is hardly the case.  They’ve asked for things and have been refused.  They’ve begged for things and have been told it’s not an educational need.  They’ve spent thousands of dollars on private evaluations and therapies which often yield critical information and results that their child’s school team has either failed or refused to address.  Any wonder why so many parents are fed-up and worn from the fight?

No is not the end of things when it involves a child in special education.  And while each situation, child, and team is unique, there are a few things that parents need to keep in mind.

  1. If you’re told “no” after going into your child’s IEP meeting to beg for something because your “heart of hearts” knows it’s needed, forget it.   You need to go in with hard data to support the need.
  2. If you’re told “no” or encounter resistance to something you’ve requested, put the request and facts in writing and ensure that there is an action step (e.g. please respond back to us in writing) and deadline (e.g. by April 10th).
  3. If you’re told “no” and have been clearly refused, request Prior Written Notice which requires that the school delineate their reasons – in writing – for the refusal.

If you’re able (financially and otherwise) to secure private services for something your school district has said no to providing, make certain that your private clinician or provider is capturing data to demonstrate that your child is making progress.  School is all about progress and if your child has failed to make progress prior to the start of a service or support that you’re accessing privately (and which the district refused) and then begins to make progress afterward, you need all possible documentation to present to the district.

Bottom-line is this:  Schools will often say no – sometimes using reasons that leave parents shaking their heads in disbelief and then their fists in anger, but that’s not the end of the story.  Advocating for your child in school is not for the faint of heart nor is it a short-term process.  Rather, it requires parents to keep “upping the ante” by understanding that “no” is often the first response but may not be the last.

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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.

“Leaning In” By Another Name

I know that there are going to be people who vehemently disagree with my thoughts on this, but that’s okay.  I tend to speak up and out particularly if I believe others may be harmed or excluded in some way.  This is no different.

Several days ago, I heard Sheryl Sandberg say that “not all women can do what I do.”  I stopped for a minute before my head blew off my shoulders, only to conclude that regardless of whether you interpreted this statement as “I’m giddy because I have access to supports and opportunities that other women don’t” or  “I’m smarter/more capable than the rest of you,” it set me off.

Sandberg’s premise that women need to “lean in” in order to achieve, be successful, be recognized as strong negotiators or leaders … all assume that women are somehow either sitting on their behinds watching the world pass by or are hoping that, someday or somehow, someone (perhaps on a white horse) will recognize their efforts and reward them accordingly.  Her advice that women take more risks and fantasize about their careers assumes that women at any age/stage either aren’t or haven’t been doing so, or that working mothers in particular have the time or resources to be *able* to take these risks or imagine themselves elsewhere.  Risk-taking and dreaming are great, but neither pays the bills.

For a woman who makes an income with more zeros than most people – women or men – will ever make … for a woman with the convenience of having a nursery attached to her office so she can easily soothe her child … for a woman who extols the wonders of having a spouse who helps with the housework and how this makes all the difference … as far as I’m concerned, this is bullying … albeit wrapped in a nicer package.

You might say, “Hey…this is an awfully harsh comparison to make to a woman whose purpose is to motivate women to reach high.”  I think otherwise.  Why?  Because while bullying takes all forms, there are commonalities – bullying makes the recipient feel bad about themselves.  Makes them question their worth…wonder if they belong…makes them feel  “less than” or somehow lacking.  And yes, I’m vocal about bullying in all forms and ways.

Whether Sandberg cares to acknowledge it or not, there are millions of women “leaning in” every day to be both Mom and Dad as single parents, struggling to maintain their families and their lives.  Millions doing the daily juggling act of work deadlines, sick kids, aging parents, and managing a marriage and home.  Millions whose education, skills, experience, and yes…drive could easily match Sandberg’s, yet situations and life have altered their paths.  Does this mean they aren’t working hard or smart enough?  That they’re slackers who need a swift kick to shift out of neutral and into gear?  I think not.

It seems to me that we’re on a collision course between women who define their achievements in terms of rank and salary and those who see their lives and success differently.  Sure, what woman wouldn’t like to be making more and have more flexibility and resources at her disposal.  But rewards and recognition – both in business and in life – are personal measures that shouldn’t be open to scrutiny by others *unless* they are opening their hands to help.  Real help in real ways.  Women have made huge strides over the past 20 years, in part because other women have reached out – not down – to open doors, offer guidance, and lead the way.  That’s why telling women how they’re doing things wrong and making women feel bad about themselves is leading us to a critical fork in the road.

The whole “lean in” concept assumes that women haven’t been trying hard enough or haven’t been striving to reach the bar, placing many on the fringe as outsiders vs. bringing them into the fold as part of a whole.  It reminds me of those dreadful middle school years where cliques of girls would verbally spar with each other to achieve status.  And we know which girls always worked the hardest – and yes, even the smartest – for recognition and acceptance and received it the least.  Isn’t it time to forget the catch phrases which alienate and start recognizing that “leaning in” is just one of the many things women are already doing – and doing quite well – and applaud them for such?

Beating The Drum A Bit More…Telecommuting, Etc.

For the past few weeks, everyone has been either talking or reading about Marissa Mayer’s decision to end telecommuting for Yahoo employees.  I’ve read just about every viewpoint – those who support it, those who vehemently disagree with it, those who believe it’s smart business, those who are waiting for Mayer to realize the error of her ways.

I’ve already made my perspectives clear on it – it’s a bad business decision, the impact of which go beyond the in-house fallout and anticipated revolving door of exit interviews (if Yahoo even cares to listen) to broader concerns about how the CEO world is going to react/respond.  No question this is a major blow to the years of progress made in the workplace flexibility arena.  But there’s a little more to be said.

I just read a 2011 Forbes article  – “What Employees Want More Than A Raise,” which reviewed the top drivers of retention.  Care to guess one which was at the top of the list?  Respect.  Hum … respect.  Let’s see…

  • Can a company be viewed as “respecting” its employees if their diverse needs and complicated work/life balance issues are ignored…or worse, shoved aside entirely?
  • Can a company support any contention that it “respects” its employees if management institutes mandates (i.e. you will be at your desk every day at 9:00 a.m.) vs. opening up for discussion – yes, across the organization – operational changes being evaluated (i.e. we’re exploring ways to modify our telecommuting policies and are asking for your input)?
  • Can a company view themselves as “respecting” the manager/employee relationship when decisions are made based upon explanations (i.e. the need for communication and collaboration) that simply don’t add up?

It’s probably clear where I’m heading with this…the answer is no.  Respect is far more than a term in a mission statement or something taught in a Management 101 class.  It’s recognizing that communication happens top-to-bottom, bottom-to-top, and side-to-side.  It’s understanding that collaboration means working together on difficult issues, appreciating the impact major decisions will have on employees, and offering real, viable options that truly demonstrate that every employee is valuable and, you got it, respected.

No…I don’t see anything about this decision that demonstrates respect.  Rather, whether it was Yahoo’s way to weed out non-performers or demonstrate that they can exercise control over their workforce, it’s pretty apparent – no matter your perspective on the decision itself – that “respect” for its employees was not even a discussion point during that meeting.

Few Working Parents Are Saying “Ya-hoo” Today

Having just returned from the Alliance for Work-Life Progress (AWLP) annual forum in Baltimore, discussion surrounding Marissa Mayer (Yahoo) and her decision to end telecommuting for employees bubbled up throughout.   No question, many (including me) are talking about this business decision, and it’s one that deserves plenty of discussion.

Back in the dark ages – when I began working in the work/life arena, terms like job-sharing and telecommuting required definitions and explanations.  They were foreign concepts to many and those remotely familiar with them quickly concluded that it was something the “other guy” may consider doing, but not them.  We’ve come a long way…until Mayer slammed on the brakes.

Progress means taking two steps forward and one step back.  We try a new strategy or program and then have to pivot and adjust.  But when something that has been earned – whether a promotion or the ability to work remotely – is taken away under the guise of wanting to improve communication and collaboration, it becomes a new game.

Communication is a process that involves sharing information, facts, and ideas.  Collaboration is a method of bringing together minds and talents.  Neither requires that people breathe the same air space or pass each other en route to the cafeteria.  At least not every day.  We’ve long since passed the “punch in at 9/punch out at 5 (if you’re lucky) and I need to see you sitting at your desk whenever I pass by” workplace, and those who have fought for progress in the area of workplace flexibility are not going to relent.  Nor should they.

Anyone who has a pre-schooler, teen with a disability, elderly parent, sick spouse, or simply the desire to adjust their work location as needed would agree that this mandate is a no-go.  It’s one thing for an organization to be *working toward* a culture whereby flexible work options are part of their operations, but quite another to have it implemented and then taken away.  Since when did we revert back to measuring productivity by face-time?  And what measures is Mayer using to conclude that communication, collaboration and productivity have suffered because of telecommuting employees?   Certainly she must share.

Along with up-ending the lives of employees in this organization, there’s a broader concern, one that I shared with colleagues at AWLP’s forum.  Other CEOs – because we know that CEOs communicate and collaborate with other CEOs albeit not in the same building – will now either be re-examining their own flexible work/telecommuting policies under a new lens or will be concluding that no…this entire concept isn’t for their organization because if it didn’t work for Yahoo, it won’t work for them.

A business is its employees.  Not its building or products.  Not its intellectual capital or services.  It’s their people.  Diverse individuals struggling every day to balance their work responsibilities with home lives.  Organizations compete for “best company” status and spend millions recruiting and retaining top performers.

Some things we know …

  • The emphasis on employee health (mental and physical), stress, balance, and flexibility are core business issues and concerns.
  • Employees place a huge emphasis on the importance of their leaders/managers listening to their needs and responding accordingly.
  • Workplace flexibility is always at the top of the list of reasons why an employee joins or remains with an organization.

Yahoo’s short and long-term turnover numbers, exit interview results, and their retrenched recruitment strategies (and goals) will definitely be things I want to see.  And while the extent of the fallout will take some time to assess, of this I feel certain – those employees impacted by this archaic policy will either let their feet do the talking or are saying a lot of words these days, most of which would sound something like this … “*@#!!*#*!!”.