Hidden Disabilities -- 5 Things You Need to Know

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

I think we'd all agree that it's easier to believe and understand what we can see and doubt or question things we cannot.  For children, teens, and adults with an invisible, or hidden disability, this increases the obstacles and the barriers to getting support.

There are some basic things to know about things you cannot see:

1.  The issue of no visible supports.  It's extremely difficult for a 5th Grader to explain to a teacher that he/she needs to stand vs. sit in a classroom.  Or to once again explain that their inability to read social cues in high school requires teacher assistance.  In school, disclosure is needed to access supports and services, yet many children struggle to convey and explain what they need even with these supports in place.  And because what they need isn't seen, they often face push-back and misunderstanding due to the hidden nature of their needs. 

2.  The issue of stigma.  No one wants to acknowledge that they're struggling and this is particularly true in the workplace.  The issue of "conceal or reveal" exists for every employee with an invisible disability and much depends upon the person, his/her needs and diagnosis, the company and environment, external support, and what guidance is received related to making their needs known.

In school, there are supports such as IEPs or 504s and parents are the front-line advocates in this arena.  Yet in the workplace, it's up to the individual to self-advocate.  Disclosure and the associated stigma and possible ramifications of doing so have real implications.

3.  The issue of being misunderstood.  Parents of children and teens with developmental disabilities, auditory processing deficits, learning challenges, and mental health issues (just to name a few) know the fight they often face to have teachers, family members, and others understand that their children's needs are real.  Far too often, children/teens with invisible disabilities are penalized - in school, in the community, at family functions, and in the juvenile justice system - for needs that cannot be seen. 

4.  The issue of permanence.  While there are services, supports, and strategies that can strengthen areas of need, many invisible disabilities are lifelong.  The issue often heard, when is comes to children and behavior, for example, about it being a "stage or phase" does a disservice to the struggles faced.  It also makes learning to self-advocate harder when others doubt your word and your realities from childhood into adulthood.

5.  The issue of struggle.  We tend to empathize with someone who uses a visible tool to aid in their functioning, yet often ignore or underestimate the needs of those whose struggles cannot be seen.  The physical, emotional, and mental toll of invisible or hidden disabilities are as real as any that can be seen, if not moreso.  The challenges faced go beyond learning to live with ADHD or a mental health diagnosis -- they are intensified by having to convince or prove that what they're dealing with is real.

From parents advocating for their children in school and teaching teens how to self-advocate, to acknowledging invisible disablities in college and the workplace,  the words of a very wise man are words to remember:

"Everything that we see is a shadow by that which we do not see." -Martin Luther King, Jr.

He's Just A Troubled Kid

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

I recently connected with a former friend from many years ago in one of those "So, how's life been treating you" conversations.  I'm not terribly fond of these catch-up calls, but he called me so I was able to ask questions and listen which I prefer to do.

In the course of family updates, my friend spoke of his nephew, saying he was struggling, was not terribly social, spent most of his time in his room, and said, "He’s a troubled kid.”  My first reaction was - what an antiquated phrase - yet kept asking questions, hoping to perhaps offer some insights into how he could help him.  Wrong assumption on my part.  Understanding his issues and wanting to step in to help was far less important than conveying - multiple times - that he’s troubled. 

After hanging up, I thought to myself ... why is this phrase still used to describe a struggling child?  I can't ever recall hearing anyone refer to an adult as a troubled adult.  It's not only a poor generalization, but it conveys nothing of substance.  To me, it's like looking away from something unpleasant.  You're aware of it or may have seen it but no...not getting involved.

We’re quick to toss around “labels” (both accurate and otherwise) when it comes to adults – he’s depressed, she’s bipolar.  And while labels can be obstacles based in fear and the unknown, once *it* has a name, we've got a starting point.  And this certainly holds true when we're talking about a child or young adult.

I understand well the reluctance of parents to label a child or teenager and many resist at every turn.  It's easier to say that he's going through a phase or she's just introverted.  But that's not good enough and certainly not for the child him/herself.  Not only do parents need to know why their child is struggling, but sharing this information - and relevant details - is important particularly when it comes to family and those close enough to the child to try to make a difference.  We already know the alternatives and few have positive outcomes.  Not to mention the need for the child to learn self-advocacy skills based on their understanding of themselves.

We’re quick to label one of *those* kids as being in special education yet even today, many lack real understanding about just what this means.  Just listen to the line in the film Admission where one of the college admissions officers exclaims, “The kid was in special education.”  So what?  The uninformed assume that this is an automatic roadblock preventing a struggling child from succeeding in school, college, or life.  I think not.

Much continues to be said - and needs to be said - about mental health issues and our children.  There’s a push to bring these issues to the fore to ensure that those who are struggling can access the support they need.  And while our words (or labels) can harm if used as a weapon, they can also embrace.  Failing to use the appropriate words to describe a struggling child is the same as looking away.  It's not an easy choice to make and there are risks involved, yet the same applies to any new ground.  The longer we remain in the past and keep looking away, the harder it's going to be to turn a troubled child into a supported child making strides forward. 

- Debra I. Schafer, CEO

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.



A Price Tag On Our Children...?

This is a rant.  Maybe a vent.  Not sure the difference but here it is anyway. A colleague contacted me today asking whether I knew of someone who could help support a middle school child with autism.  The person was needed at school from arrival until the end of the day including lunch, recess, specials...you get the picture.  These positions are generally advertised on school district websites or placed on Craigslist, but this individual was looking to me for a person with experience and training in this arena.  When I asked what the position was paying, I'd like to say I was shocked but I wasn't.  I just shook my head in disbelief (as I've done many times before) at the continued lack of understanding about the importance of this role.  Not to mention the pathetic compensation.

An aide for a child with special needs is like a limb.  The child can maneuver without it but not nearly as well.  And surely not well enough to compensate for whatever deficits exist.  So like a limb, it's essential to understand how it works, its purpose...and its worth.  Hard to imagine putting a price tag on an arm but when it comes to an aide in school, that's exactly what's happening.  And the current price tag isn't even close to hitting the bar.

I know all too well about school districts cutting budgets and services, that music and art departments have been eliminated, and that many school-based activities no longer exist.  I also know that educating - and this is more than academics - children requiring special supports in school is not an option but a requirement.  This means aides for many children and the role these individuals play have been undervalued for far too long.

Paying an aide $7.50, $9.00, or $11.25 per hour to teach, reteach, coach, mentor, monitor, guide, support, supervise, advocate, run interference, capture data, collaborate with teachers, and communicate with parents is insanity.  Pet walkers are paid $15-$25/hour (and as I've said before, I have nothing against pets).  I could list any number of roles or positions paid more than aides.  But here we're talking about a person who often remains closest to a child who is struggling in school and needs the best (yes, I know ... "appropriate") supports possible, and are asking them to undertake herculean tasks for pennies.

For many children and teens with autism, learning disabilities, or behavioral challenges, their success - no, their ability to make it from 8 a.m. to 3 p.m. - is often dependent upon the support and expertise of a single person who is expected to work wonders while wondering about their worth.  As I've said about many things regarding the needs of children struggling in school, "it's not a nicety, but a necessity."  And this certainly applies to aides.  It's not all about the money - many become aides to make a difference in the life of children, but when we're talking about an adjunct to a child, we can and must do far better.  The success of our children in school and beyond depends upon it.

It's Halfway Through The School Year - So How Are Things Going?

January/February are typically brutal months - subzero temperatures, flu, snow days...everyone's counting the minutes until spring.  But if you're the parent of a child struggling in school, this time of year is about far more than the weather and health.  It's the halfway point in the school year which often means that school struggles morph into full-blown crisis situations. It doesn't matter whether your child is in 4th or 11th Grade, whether your child has Asperger's Syndrome or your teen has behavioral issues.  What does matter is that it's time to ask yourself (and honestly answer), "How are things going?"  For millions of children, the answer is not so well.  And for the millions of parents standing behind their children, the realities are as harsh as the weather.  And these harsh realities impact everything - home, work, families.  Everything.

So now what?

If your child has not been evaluated yet is facing mounting struggles in school, now is the time to pursue an evaluation.  School can conduct it, but it's best to pursue an independent evaluation conducted by a clinician of your choosing.  It often takes weeks if not longer to secure appointments, so after you dig your car out of the snow, start moving on it.

If your child is on an IEP and you have not reconvened your team since the school year began, it's time to call a meeting.  Prepare to discuss goals and progress.  Prepare to bring any data you have collected (and yes, parents should be collecting data too).  Prepare to advocate for changes, whether to services or supports ... whatever is not working needs to be reexamined.

If your child is on a 504, review all the accommodations to see if they are still appropriate now that half of the school year is behind you.  Make sure the school is actually implementing the accommodations as well and doing so consistently, particularly if your child is in middle and high school where multiple teachers come into play.

If your child is regressing, time to focus on data.  If your child is not making progress, yes...it's "data time" as well.  It's essential that you are requesting and gathering data from school, from outside supports (e.g. private tutoring, speech therapy), and that you are also providing data from home.  Remember that IEPs are not solely focused on academics - think social, behavioral, developmental, and functional needs as well.  So if you're not seeing progress, whether within or outside of the school environment, this information needs to be shared with the IEP team.

Parents often focus on the here and now - makes perfect sense since if things are not going well today, it's difficult to look a few years (or months) into the future.  Yet remember...the goal of an IEP or 504 is to help prepare your child for life after high school which goes far longer and includes far more than school.  So if things aren't going well today, you still have half a school year left to make things right.  Or at least, better.

One Year Ago...

We began sharing our thoughts with you in an effort to "raise the volume" on critical issues even when immediate or easy solutions were not apparent.  Kicking things into gear (i.e. ideas, behinds, whatever comes our way) is what we are all about. Some things remain as they were since last fall and warrant another quick go-around:

  • Companies concerned about employee engagement, productivity and retention need to recognize that supporting the fast-growing number of *parent employees* raising children who are struggling in school has a direct correlation to the bottom-line;
  • The numbers of children being diagnosed with ADD/ADHD, autism spectrum disorders, learning disabilities and "hidden differences" continues to skyrocket and this equates to complex issues (e.g. families, finances, health) facing the parents standing beside these children;
  • All children and teens deserve every opportunity -- along with the services and supports they need -- to succeed in school for school is the pathway to life;
  • Bullying of any sort (i.e. school, cyber) must not be tolerated and each adult has a responsibility to intervene at every turn *and* to teach the social thinking and behavior skills needed to end this epidemic; and
  • Parents ... every Mom and Dad ... hold the keys to their child's ability to succeed in school and beyond.

Last year around this time, some statistics were eye-opening to many yet supported what we already knew:

  • That 68% of 8th grade students cannot read at grade level;
  • That 85% of children with special needs report being bullied; and
  • That 100% of all children need an adult -- whether a parent, guardian, or extended family member -- on their side to advocate for their needs.

We can all discuss policy change, education reforms, teacher accountability, school choice, testing, and a host of other child and education-focused issues and each has their place and importance in the realm of raising productive children into adulthood.  Yet one thing is for certain -- it all starts with one parent or parent team armed with the information and strategies necessary to turn their child's frustration and failure into progress and promise.  We hope you agree.

End of Year Musings

Something happens at the end of a year.  People make resolutions that are often not kept.  Friends decide to become friends again...if only for a short while.  And parents hope for a better year for themselves and their children. I, on the other hand, see the start of a new year as a continuation yet one with possibilities for a better tomorrow.  Continuing to work with parents of children with learning differences and to work with students moving toward the end of their high school education is nothing short of life-changing.  Few things can quite compare to knowing that your efforts have changed a life and if helping parents means helping their children, life is good.

My hope for the new year is that more parents become empowered to truly help their children succeed in school.  Eliminating the confusion and fear associated with advocacy is another hope as without adults willing and able to stand up for children, those with the most to lose (i.e. the children) will continue to struggle.

We as adults have the ability to do miraculous things.  It takes determination, guts, passion, and an unwillingness to accept failure as an option.  Each of us...adults and children alike...are individuals and as such, we need to accept the differences and work to ensure that every one of us -- particularly the children -- have an equal opportunity to succeed.

It might sound like talk but it's actually reality.  Success is defined differently for each of us, true, yet show me one child who doesn't want to read or who doesn't want a friend and I'll show you a flying car.  Stand by your children and let them know that you will carry them through whatever comes because this is what makes a parent a parent.

Happy New Year to 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.

Navigation means...

Determining a course... Plotting a route...

Heading a movement.

I suppose heading a movement is precisely what I'm doing -- the movement to educate and empower parents to be informed and skilled parent advocates for their children.

For some, it's navigating the route into and through special education.   Perhaps you have a 7-year-old who was just diagnosed with Asperger's Syndrome or a 13-year-old who has had an IEP for years yet things simply are not working and progress is not being made.

For others, it's determining the course for transitioning between middle and high school or high school into college.   Perhaps your child just entered the middle school "madness" and is already struggling or you and your 11th Grader are trying to figure out whether college is a real option and if so, how.

Whether you find yourself in the early phases of the process (i.e. a "novice") or have been working to maneuver for some time (i.e. a "veteran") ... whether you regard yourself as a "full-time, stay-at-home" parent (a term I truly dislike) or are working to balance your job and home responsibilities, I'll be sharing information, resources, and yes ... thoughts (some you'll like and others you may not) to help you navigate through the most important job your child has ... education.  Your child needs your voice and my role is to be sure it's strong, clear, and expert-level.

I hope you will share your thoughts as well.  Looking forward to this new dialogue...