We're Losing Our Kids

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

The suicide of a college student.  The disappearance of another from a busy street.  Both in my local community.  Both within the past three weeks.  One remains an active effort with the hope for a positive resolution.  The other no longer does.

A young man I know well called just prior to Thanksgiving, telling me that the roommate of a friend had just committed suicide.  On campus and in their shared room.  A college student approaching the finish line toward graduation with a full life yet to be lived.  His friend needed short-term housing until alternate living arrangements could be made.  I heard the pressing need, yet the only thing that registered was that another promising young adult was in so much pain that ending it all seemed to be the only way out.

The raised voices about removing the stigmas and providing better access to mental health care are being heard.  Identifying young people who are struggling with depression, bipolar disorder, and other mental health issues is critically important, but that’s only one side of the coin.  There's another side, one that requires us to dig deep, that's as important if not moreso.

Like flipping a light switch, children cross a “magical threshold” into the responsibilities and pressures of adulthood when they turn 18.  Never mind that a child's brain is not fully developed until around the age of 25.  The welcome mat is thrown down and we hope for the best.

So what happens.  They find themselves navigating classes, working to maintain their grades, handling their self-care and finances, dealing with roommate and peer issues, figuring out new environments and expectations…a host of demands that would tax even the most prepared young adult.  Yet many are simply ill-prepared and not ready despite what the law says.

Along with reaching this passage to adulthood comes the accompanying challenges and obstacles that prevent and preclude friends, professors, and others from being able to step in when a student is in crisis.  And this doesn’t even touch on the "red tape" issues facing parents who are trying to get their children the help they so desperately need.  And often times from afar.

College is a “hot topic” today – in fact, I just blogged about it.  The cost of attendance, whether college is worth the investment of time and money, and the safety of students ... all important issues. Yet attention to the fact that the lives of many of these young adults are balancing on a tightrope because they are unable to handle the pressures seems to be missing in these discussions.  They're slipping and some of these cracks in their new-found adult lives are swallowing them whole.  And forever.

There is shared grief here … this student’s friends who knew there were issues yet did not know what to do or where to turn.  This student’s parents who may have been unaware of the extent of their child’s difficulties or had been unsuccessfully trying to secure help.  And the grief that we all need to share because of the lack of safety nets for our 18 - 21-year-old children who are dealing with depression, anxiety, drug and alcohol issues, and other issues that are pushing them to despair.

I’m a parent too.  Of a young adult who has also experienced difficulties.  I know the fights involved and the “systems” that work against parents in the quest of their lives.  Few things cut through a person’s existence like feeling helpless … like knowing someone is struggling yet being told that information cannot be shared … like knowing that the line between having another day to fight and the last day can be hair thin.

My heart goes out to this student.  No child -- and yes, whether 18 or 25, they are still children -- should be alone, unable to cope, and without the supports they need.  There are resources such as Active Minds (www.activeminds.org) working hard to raise awareness and garner support for college students with mental health issues.  We hear about these stories every day.  Yet when it happens to your child or in your community, it drives home the fact that some things have to change.  What are we waiting for?

-Debra I. Schafer, CEO


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.

Leveling The Playing Field

Parents of high school kids know ... it's SAT and ACT season again.  Stress is on overdrive as everyone is striving for ways to improve scores - tutoring, prep classes, working through the huge practice books at home.  All eyes are focused on the thrill of receipt - opening the mail to find those glorious oversized packages with writing on the outside that says "You're accepted" or "Welcome."  Believe me, I've been there with my own child so understand it well. I just read an article in The New York Times entitled, "It Takes A B.A. To Find A Job As A File Clerk" which focuses on an Atlanta law firm that requires every employee - including the in-house courier making $10/hour - to have a bachelor's degree.  The firm's managing partner said that this requirement shows that every employee has made "a commitment" to their future and not just a paycheck.  Sounds reasonable since college is really about honing skills needed in most every line of employment - organization, planning, meeting deadlines, self-discipline, flexibility, and teamwork.

But here's the problem with requiring all employees to have a degree - there's a big difference between equal and fair.  Equal means the same but fair means, well, fair.  Respecting and supporting individual differences and recognizing that not everyone fits into the same box.  It means understanding that a 5th Grade child with dyslexia reading from a 3rd Grade book and receiving an "A" on an assignment is fair even if others are reading from the 5th Grade text.  That a college student who requires extra time and a quiet room to complete an exam is fair even if others are taking the same in a lecture hall with 150 other students.  It's about evaluating each person as an individual and on their own merits vs. expecting the same for all.  This "life lesson" begins in school and since school is about preparing children for life, shouldn't the same principle apply to the workplace as well?

Expecting every employee to hold a B.A. in order to secure employment means that many bright, capable, and talented young people will be overlooked.   Believe me, I'm a huge proponent of college and helping all students receive their degree, yet not everyone can reach this milestone.  For some it's financial.  For others it's access.  No matter the reason, it's unfair and unreasonable to assume that the reason a young person does not hold an undergraduate degree is because they don't aspire for success or don't want to invest in themselves.

There are many students with learning differences, Asperger's Syndrome, or ADD - with amazing skills and who would be top performers in the workplace - who are unable to navigate the complexities of college.  Maybe they tried but it didn't work.  Maybe they were told to not even consider college as an option.  Regardless of the reason, concluding that a young person without a B.A. is only focused on a paycheck is an arbitrary measure and one that places barriers where, in all likelihood, enormous barriers already exist.  And this includes even when, according to a recruiter referenced in the same article, 800 resumes are received for one job.

We all know people sans a college degree who have made contributions to every area of life - business, the arts, philanthropy, many achieving far more success (recognizing that success is subjective) than those with B.A.'s.  And this certainly includes many with learning or similar differences for whom their commitment to themselves is defined by the struggles they have endured and their "never give up" attitude to forge ahead.  College is wonderful, no doubt, yet self-respect and self-worth trumps it every time.  There's a reason it's called a playing field and not a playing box.  Fields are larger and allow for many to play.  Whether school, employment, or life, the larger the field the better.

Children At Risk

Over the past several weeks, we have heard far too much about our children ending their lives because of relentless bullying and harassment that has left them vulnerable and, they believed, without choices.  And just when it appeared as though adults were starting to "get with the program", recognizing that they need to make the message of tolerance and acceptance part of the everyday method of operation -- including President Obama's message that bullying is *not* just part of the teenage scene -- in walks Clint McCance. In case you were not aware, McCance is a school board member at the Midland School District in Arkansas who, on his Facebook page, made his feelings clear about gays and suicide -- he approves and, in fact, he stated that the day he will wear purple is the day that all gays follow suit.  He also stated that he would disown his children if they were gay.  Need I say more?

Actually, I do need to say more.  When we typically think of children at risk, we think of children from underprivileged households or those with learning disabilities.  Rarely did our thoughts go to the adults charged with keeping our children safe as putting our children at risk.

Despite a public apology (using that term loosely) and an announcement of his resignation on CNN (Anderson Cooper), there is absolutely nothing that shows me that this individual has any intention of changing his feelings or perspectives nor has any plan to educate himself and/or engage with the gay community to begin to integrate understanding, acceptance, and tolerance into his repertoire.

The message cannot be stated powerfully enough...the safety of our children is paramount.  They must be safe to be who they are regardless of their sexual identity, religious beliefs, or political views.  They must know that there are people around them who are "on their side" and are supporting them as they spread their wings from childhood into adulthood, allowing them to develop their path freely and without fear.

The dialogue is starting -- a first step.  Yet it is not enough.  Until parents and adults step-back and consider their role in creating an environment -- whether at home, school, or the community -- whereby *all* children can be safe, we all remain responsible for putting our children at risk.

Bullying and Tragedy

I would be remiss if I did not weigh in on the recent suicide of a bright, talented young man from Rutger's whose world was destroyed by two classmates out for a laugh.  To say that I am equally angered and heartbroken would be an understatement. Over the past decade, I have worked with hundreds upon hundreds of parents whose children have suffered bullying, harassment, and worse at the hands of peers.  Doesn't matter the grade -- 1st Grade, 5th Grade, 10th Grade, college.  And while attention to these issues has increased, so too has the number of young people who feel frightened, overwhelmed, without support, and as though whatever they are facing can not be handled any longer.

We have instituted "anti-bullying" programs in schools, churches, and synagogues ... started groups to address self-esteem issues for teens and special education issues in classrooms ... provided platforms for college students to stand-up and speak about the issues most important to them.  Yet this week, several children have ended their lives because clearly, things are not working.

We are losing our children.  Bright, talented, sensitive, aware children.   Children who were on the path to adulthood and who may have made contributions to our world that could have changed it for the better.  We can shake our heads and collectively mourn or can say "enough" and start to do something about it.

Are we raising our children to respect themselves and others, to value differences, and to embrace all perspectives and experiences?  Are we demonstrating a clear intolerance for anyone or anything different from ourselves?  What messages are we giving, both verbally and by our actions?  And what could be the consequences?

We are at a crossroads and we can either continue along the path we've been walking or can make a decision to change.  I cannot imagine the grief that this student's parents, family, and friends are experiencing.  What I can imagine is that this young man deserved the respect that we all desire.   And a precious life has been lost.

Parents -- Your Time Is Now

I've been closely following all the media attention over the past week regarding education.  Finally, our national attention has turned in this direction and policy makers, business leaders, and educators have had their "smack on the side of the head" moment recognizing the direct correlation between the education of our children and our future in virtually every area of life. On a recent Philadelphia newscast following the opening night of "Waiting for Superman," a board member from a fairly large school district in the Philadelphia suburbs spoke the words that I've been speaking for years...parents need to learn to navigate the system.  Finally...someone on the "other side" of the table has said it.  Parents are an integral part of this process and have been excluded from the discussion for too long in part because they lack the knowledge of the system on a micro level -- their school district, their school, their child's class, and their child.

Are there pockets of parents -- and individual parents -- who have been and continue to be outspoken advocates for education?  You bet.  Yet the reality is that there are millions of children struggling in school and while the statistics paint a picture that no adult should want to see, the problem remains the disconnect between the national stats and the individual child.  Making the messages resonate so that parents finally understand that the issues are really talking about one child -- theirs -- and that their role in partnering with their child along the education journey  is the only way to change the status quo.

Whether your child is in 4th Grade, 10th Grade, or college ... whether your child is reading below grade level or has been diagnosed with a learning difference ... whether your child is attending a charter school or a private school ...  your involvement is a critical part of ensuring that your child is making measurable progress toward clearly established goals.   We can speak about policy change, reform, teacher accountability, math and reading levels, competitive nations, and a host of other key issues, each of which are part of the mosaic of education.  Yet without the active involvement of parents at every level of the discussion from the kitchen table overseeing math homework to active participation on school boards, real change will be a "stop and start" proposition.

It's October...early in the school year.  Commit to getting off the sidelines and into the game.  Volunteer one hour per week at school.  Attend school board meetings.  Start truly measuring your child's progress on a weekly basis.  Use data to track where you child is today and where he/she may be in two weeks.  Stop sitting on the sofa watching the media messages and stand up and do something.

Your child's future is depending upon your involvement.  The time is now.

Thoughts About "Education Nation"...

The groundswell is happening although I'm not surprised.   Issues surrounding the state of education have plagued us for years although not until recently -- with issues of achievement, teacher accountability, and bullying coming to the fore -- have people started to really take notice.  And it's about time. During this evening's NBC Nightly News (and after this afternoon's MSNBC "Education Nation" programming), a statistic totally stopped me in my tracks -- 68% of 8th Grade students cannot read at grade level.  That's 68%.  But wait.  I wondered just how many of these students are classified as special education.  And if few are, there is a much larger issue at hand.

Given that special education equates to the delivery of services and supports that address areas of deficit, wouldn't it seem as though *all* of these students would qualify?  Regardless of the reason behind the fact that they are lagging behind, would it not be safe to state that an 8th Grader -- any 8th Grader -- who is reading at a 5th Grade level would have deficits?  Would require remediation?  May need a tutor or alternate teaching methods?

Seems to me that special education needs a clean slate in terms of determining what qualifies a child for these additional services.  If 68% of our 8th Grade students cannot read at grade level and if they need tutors, differentiated instruction, or any of the other ideas being discussed, they should most certainly qualify as "special education".  Perhaps we need to change the phrase "special education" and recognize that many children require *more than* the median in order to read, write, do math, and behave according to determined grade-level standards.

It's time for us to evaluate far more foundational issues regarding the state of public education.  Let's lose the labels and categories and begin addressing the education of our students as they are -- as unique individuals who each possess strengths and needs, the latter of which affects far more students than currently *fit* within the special education confines.

Would love to hear what you think...

Enough already...

NBC news tonight reported about a father from Florida who had enough with the bullying directed at his daughter.  What did he do?  Walked onto the school bus and basically said "enough" to the students.  How many of us would have either liked to have done the same or would like to do the same (or more) today? The report also raised some sobering statistics -- 85% of children with special needs report being bullied and over 150,000 children do not attend school for fear of the same.  When do we say enough already?  When do we do more than state that a school is an "anti-bullying" environment or simply provide a program addressing the issue.

When do we truly begin to focus on what is creating children who find the need to bully...to make other children feel "less than"...to physically and emotionally torture peers for fun.  What needs to happen beyond what we have already either witnessed from our homes on TV or have experienced with our own children to say "enough already."

The risks are increasing and the interventions -- while they appear to be on the rise -- are not getting at the root of the problem.  Something is terribly wrong and we need to figure out new solutions.  We have a responsibility to our children both individually and collectively to intervene on a new level and to end this madness once and for all.

Goals are the goal...

The main focus of your child's IEP should be the goals.  Without goals that meet specific criteria, you cannot measure progress.  And isn't that the entire purpose of the IEP ... to ensure that your child is making progress whether in reading, social skills development, or behavior?  Parents are always saying that their child's IEP goals are vague and make no sense.  That has to stop. Along with an upcoming workgroup session (for those in the Philadelphia/Delaware/NJ areas) on October 2nd, I'm holding two web chats (9/22 and 9/28) to discuss issues related to IEP goals and virtually anything else related to your child's IEP.  If you're interested in participating, please visit my website for more details.

IEP Check-Up

Parents often tell me that over the summer, they want nothing to do with IEPs, behavior charts, and home/school communication notebooks.  I get it -- truly I do.   It's a full-time job to be your child's "case manager" and to be responsible for overseeing, facilitating, generating, and coordinating virtually everything related to your child's educational needs. Now the reality check.  If you have not carefully reviewed your child's IEP while sitting on the beach or relaxing at the mountains, now's the time to do it.  School is underway...your child is adjusting to a new teacher, new class, new peers, and likely a new routine.  It's time to review the IEP from last year if being carried over to this year *or* to review the IEP that was developed at the end of last school year *for* this year to be sure it meets your child's needs today.

Your child has changed over the past few months and things that may have been needed in April may not be needed any longer.  Or visa versa.  The IEP is a "living document" and as you know, living things require attention.

So...look at your child's present levels in reading and math particularly if he/she received ESY services and see if progress was made over the summer (or if regression is an issue) and make certain the goals meet current needs.

Review your child's behavior plan (if one existed) to ensure that current behavioral needs are addressed.  Review your child's therapies and ensure that you have an opportunity -- no, *make* an opportunity -- to meet with the speech therapist, OT, PT or any other therapist to introduce your child (from your perspective) and to ensure that you are receiving ongoing communication from them (make sure this is also written into the IEP) about their work with your child this year.

Just as you do a checkup annually for your health, the same applies to the health of your child's IEP.  Current and relevant...this is what's important.