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.

The Roller Coaster Ride That Never Ends...

How many parents haven't agreed to ride the roller coaster at least once with their kids?  It's almost a "right of passage" - sitting for 3 minutes on a ride that you can't wait to end.  Yet riding the roller coaster at an amusement park doesn't come close to the other roller coaster ride - the one that parents can't get off because it simply doesn't end. I can count on two hands the number of days school has been in session yet would need my hands and toes plus those of others to count some of what I've already been told...

  • My child's teacher refuses to allow my son to have a midday snack even though it's on his IEP and has been documented by medical need.
  • We explained that my daughter needs extra time to transition from class to class and it's in her IEP, yet we've already received a note saying that she's been late for class several times.
  • Even though my child's IEP states that homework will be limited to 30 minutes per night, we're already spending double that amount of time and behaviors are starting.

Yes..it's the start of a new school year.  New backpacks.  New classmates.  And a host of new issues that often combine with those carried over from last year.  If your child is in special education, you know well that this ride is anything but short and you won't be on solid ground for a while.

Added to the challenges that inherently accompany having a child with autism, ADD/ADHD, or a learning disability comes slashed budgets, larger class sizes particularly if your child is in a regular education classroom, and fewer resources.  Districts are stretched thin and so are teachers.  Yet the reality is that it's the parents who are feeling the strain and the children are already showing it.

Every school year begins with the hope that it will be a good one.  That services will be provided, supports will be in place, compliance with IEPs will occur, and collaboration will be the approach.  And for many parents, this is indeed how this and every school year begins.  Yet for many others, it's anything but.

A few things to ease the mounting pressure:

  • If your child is already showing signs that things are not working, reconvene your IEP team now.  It should be routine that, depending upon how your child is doing "out of the gate," you convene in September or early October.  Remember that you can call an IEP meeting at any time so don't wait.
  • If your child made progress or regressed over the summer, bring this information and data to your IEP team meeting.  It's essential that everyone involved in teaching and supporting your child knows what has happened from June through September.
  • If your child has been evaluated or re-evaluated over the summer and you agree with the findings, provide a copy of this report to your district before heading into an IEP meeting.  You want to give them sufficient time to review the documentation so that you're all on the "same page" during your discussions.

And the most important piece of guidance is this - your child is continually changing and as such, your child's IEP may need to change as well.  If you developed this year's IEP last year, think about the weeks and months that have passed in the meantime.  Things that may have appeared appropriate in March may well be different in September.

If you have not been keeping notes at home, do so.  Your observations and data factor into your child's educational plan so be sure you're watching, listening, and recording things as the school year unfolds.  Document all conversations with school district staff - no "off the cuff" discussions apply.

Your child's greatest resource is you.  Pace yourself.  Be proactive.  Focus on collaboration.  And don't be afraid to ask the tough questions or to bring in outside support if needed.   I read a great business quote that certainly applies here too -- "What you want, you will get.  But you have to want it enough to go about getting it."

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.

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.