Business Solutions: Working Parents, Summer, and Special Needs Kids

Spring has arrived and the end of the school year is within sight.  Most kids are counting down the days while most working parents are breaking a sweat trying to cobble together two-plus months of camps, vacations, occasional day-trips, and childcare, hoping their plans on paper work in practice.  Add a child, teen, or young adult with special needs and the challenges intensify considerably.

 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

If you’re an employer or a manager, here are three ways you can offer support:

FLEXIBILITY RULES

1. Children have needs over the summer, and without school providing a predictable daily schedule, parents struggle.  Add a child with autism or other special needs, and the challenges intensify.  Some children qualify for Extended School Year services, yet they're typically less than a full-day and almost never run from the last day of school in June to the first day of school in late August/early September. 

SOLUTION:  Provide flexible work hours if not already offered, offer parents remote work opportunities, and allow for vacation and personal time to be used in hours or partial days vs. full days.  And be flexible with last-minute and crisis needs that arise.  If your parental leave policies need evaluation, now is the time to do it.  Companies that are aware and responsive to these needs are those that retain working parents.

PRIVACY HELPS

2. Children with special needs who are attending camp and other summer programs often have needs that require parent assistance.  And it's not the "I forgot my swimsuit" type of need either.  Therapies, tutoring, and other supports continue throughout the summer, putting extra pressure on already stressed parents with exceptional caregiving responsibilities when it comes to juggling work, appointments, transportation and more.

E.N. Blog - Business Solutions 2 (free).jpg

SOLUTION:  Allow parents access to a specially-designated office or private space for them to make telephone calls, schedule a video conference with camp personnel or support staff, schedule appointments, and confer with doctors, clinicians, and others as needed.  It can reduce time away from the office and provides employees with the privacy they need.  Plus, it demonstrates that the company understands the stressors involved with exceptional caregiving responsibilities, not only on a daily basis but also during the challenging summer months as well.

SUPPORTS MATTER

3. Children with autism spectrum disorders, ADHD, or similar needs require structure and predictability, and the summer months are often when this is difficult to achieve and maintain.  Parents prepare as best as possible, yet situations develop that require them to adapt and adjust quickly.  A particular camp may not work.  A childcare provider may leave.  A therapist may request additional evaluations.  These situations mean that employees need time and resources to help. 

SOLUTION:  Communicate to all employees that their EAP is available to assist with issues that relate to summer needs, whether locating a last-minute child care provider or addressing stress-related issues.  Providing employees with access to resources to help them manage their children’s needs as well as their own work/life issues is key to employee retention.  And if employee assistance or work/life programs or services are not yet available, now is the time to start.

One of the things we consistently hear from working parents is that they need more support and assistance, whether managing their children's needs or understanding how to navigate through school.  And these needs are year-round, often intensifying over the summer months as planning for September begins well before this school year ends. 

Employers play a pivotal role, not only in creating family-friendly workplaces, but in recognizing that many working parents have needs that are not so apparent...or even discussed, and that go way beyond infancy.  Offering flexibility and supports to parents throughout the year, especially over the summer months, can make all the difference in helping top performing employees remain on the job.

3 Areas Where Autism Awareness Matters

 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

April.  Autism Awareness Month...30 days of focus on autism spectrum disorders.  A good thing for those who need to learn more about it.  Yet for families living it every day, there's another need.  Planning.

1.  School

To effectively advocate for your child in school, understanding the diagnosis is important.  Yet what's essential is understanding your child's individual needs.

Autism Spectrum Disorders (ASD) is not one thing, but encompasses many things and each child is unique.  While there are definitely similarities in terms of areas of need, the diagnosis does not automatically correlate to their placement in school. 

Many children/teens with an autism spectrum disorder are fully included or spend part of their day in mainstream classes.  Their needs will continue to change as new skills are acquired, as they move from childhood to the teenage years, and as environments, expectations, and demands change.   And this means monitoring their growth and progress and making changes to their educational program as needed.

The focus always needs to be on today, yet planning for tomorrow and the many transition points, both small and large, means ensuring that school is building a strong foundation and that you're keeping a keen and careful eye on what's coming next.  Remember...keep the bar high. 

2.  College

If you think college isn't a possibility, think again.  More and more colleges and universities are creating programs to support students with autism spectrum disorders and many have added supports as well.  And while it may seem like a long way off, the transition requires carefully planning and preparation...starting now.

If higher education, whether community college or a four-year university, may be the goal, their transition plan must address it.   And this means IEP goals that go far beyond:  "Megan will research post-secondary education options" or "Tim will visit two colleges".   Preparation for college means direct instruction of skills including self-advocacy and executive function skills (e.g. organization, time management), not only in their transition plan, but in measurable IEP goals as well.

If colleges are already being explored, plan to evaluate each school's disability services department.  Some families disclose their child's disability before acceptance, while others wait until acceptance and after the college decision has been made.  No matter the path, you need to access all available information to determine the right "fit" for your child.

3.  Work

The need for parents to think about and plan for the transition from school to employment and to evaluate a child's interests and abilities must begin early - i.e. middle school. 

Many companies, such as EY & Microsoft, are recruiting employees with ASD, and smaller businesses are specifically hiring young adults with these needs and strengths.  School must be teaching the skills needed for independence, and employment is one of the key areas.

Finally...

Parents already know that one day, perhaps sooner than expected, school will end and so will the services and supports received.  Whether college is the next step or securing a job, both areas have different rules and expectations, requiring skills that go beyond getting a B on a spelling test or doing well on a science project.

Preparation is key.  And we all have a part to play -- families, schools, clinicians, agencies, colleges, employers, and more.

Children with autism spectrum disorders become adults.  They become part of the fabric of our world with astonishing strengths and gifts to share.  And they also become adults with needs that continue to require support.

April may be Autism Awareness Month, but we'll really be integrating those with autism spectrum disorders into every aspect of life when the awareness is ongoing.  That's when we'll know that it no longer requires 30 days of focus and attention.

 

It's College Acceptance Time

college2.jpg

Spring...the time of year when college acceptances are arriving and parents and teens are celebrating, as you definitely should, and making decisions about the fall.  It's a time of excitement, nerves, and preparation with congratulations to you as parents and to your child as well.

When your child has had an IEP or 504 in school, the transition process requires more than buying dorm supplies to help ensure a smooth transition.  Discussions with Disability Services are an important part of the planning and preparation process, for it's this department that makes decisions about college accommodations, an essential part of helping to ensure your child's needs are supported. 

Many parents have spent years advocating for their children's needs in school, and see college as a major transition point for them as well - no more IEP and 504 meetings.  And while this is true, your job isn't quite finished in this regard.

To help organize critical information for your discussions with Disability Services, we've created a simple worksheet - College Navigator - that captures three key areas - needs, strengths, and possible accommodations.  Most important are needs and accommodations, because addressing what your teen has received in school will help in their decision-making process in terms of what may be needed in college.

You've played an integral role in helping your child navigate through school and its challenges, but your work isn't finished.  Establishing a positive connection with Disability Services - and this definitely means including your soon-to-be college freshman in your initial discussion as they will be self-advocating moving forward - will help make this major milestone one to truly be celebrated.

What Parents Need To Know About College & Disabilities

university-hall.jpg

Few transitions bring more anticipation than when your child is heading to college.  Years of preparation along with services and supports, all geared toward helping your child realize success in college.

At new student orientation, parents are often ushered into a separate room for their orientation, where administrators talk about life on their college campus and a range of other factoids to help nervous parents relax.  Yet there's often another message that frequently throws even the best prepared parents off-kilter - it's that your child is now an adult...and you can leave. Yet if your child has a disability, this scenario is a bit different, and you need to know how.

 With increasing numbers of students with disabilities attending college, it's important that you know that you play a pivotal role in helping your child succeed.

Here are some key points:

1.  Your child's IEP and 504 are no longer applicable in college nor are their protections under IDEA.   In college, it's the Americans with Disabilities Act (ADA) and Section 504 which addresses "leveling the playing field" and anti-discrimination.  And, accommodations are not automatically provided. 

2.  Access information from each college's Office of Disability Services.  Your child does not need to disclose during the application process if he/she has a disability, yet see what information is available via their website or office. Check for the types of "typical" accommodations they provide, whether their staff has expertise with specific disabilities, how professors receive information about a student's accommodations, special housing options, and the graduation rate for students with disabilities.

3.  You/your child will need to connect with the Disability Services office after acceptance to request accommodations.  This process requires a relatively recent (i.e. within the past 2-3 years) evaluation report which should clearly outline the college accommodations your child may need, plus you'll want to provide them with your child's IEP/504 for reference.

4.  If your child has mental health issues and needs, connect with counseling or psychological services to evaluate their supports and ask how they collaborate with Disability Services as well.  And if your child is attending college far from home, consider locating and securing off-campus resources and supports as well.  While continuing with your child's current therapist or clinician via teleconference may be possible, sometimes there are in-person needs that require support.

5.  Encourage (no...ensure) that your child signs a FERPA or release of information form so that you're able to speak with college...and they with you.  Do this in all relevant departments as a form signed in one department - e.g. Disability Services, is not necessarily shared with the Bursar's Office.  You want to have all communications options available should issues arise.

6.  And finally, your child needs to understand that they need to secure accommodations early in the semester (within the first week or two) via the Office of Disability Services, plus it's up to them to determine in which classes they'll be needed.  It's similar to preparing for a blizzard - you want things in place.  Accommodations are not retroactive so if your son/daughter is failing a class mid-semester, any accommodations would apply from that point forward.

The transition to college is a major life milestone, for you as parents and for your child.  And despite the messages that may be conveyed during parent orientation and even with privacy issues, you play a pivotal role and remain integral to your child's success in college, including their physical, mental, and emotional health. 

Whether your child is attending college close to home or will be living on campus, expect changes as this is what college is all about.  Maintain regular communication.  Show interest.  And get involved if and when needed.  Turning 18 does not suddenly make your child an adult, so keep the safety net at the ready.  And recognize that it was your support all these years that enabled your child to reach this goal.

 

The Real Truth About Parental Leave

 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 can't say enough about all the recent attention regarding parental leave and the companies expanding opportunities for new mothers and fathers to spend critical time with their newborns. 

Recognizing the importance of new parents being able to bond with their children speaks volumes...about the fact that families matter in our society and that companies are focusing on establishing family-friendly cultures.  All good stuff (and smart business) and steps that are long overdue, a comment I can comfortably make having been in the work/life arena since the late 90s and can see where progress has been made.

And while more companies are now providing paid parental leave, a critically important workplace benefit, the truth is that there are millions of working parents whose parental leave needs are not being met.  Or even addressed.  Those with elementary-aged, teens, or college-aged children.  And while this isn't meant to be a comparison, anyone who thinks managing a child during infancy is the same as raising a child or teen struggling in school or life isn't looking at parenting and the needs of working parents realistically.  Each age and stage has its challenges and for many parents, sleepless nights and gray hair come with it.  But opening the lens -- and discussion -- to the truth means recognizing that the needs of working parents don't stop at several months.  Or at age 5.

There is nothing more important than establishing a solid foundation for a parent and child during the early years.  I could barely stand to leave my child as a newborn or toddler myself, and I was self-employed at the time so didn't have the restrictions and limitations that many parents face.  No question...these were glorious years, yet we cannot be short-sighted nor can we forget that babies and toddlers grows into children and young adults whose needs become as complex as they are.

As every parent will tell you, parenting is lifelong and the challenges intensify as our children get older.  The issues facing kids today are nothing like they were when we were growing up, and this requires parents to be more...involved, engaged, vigilant, accessible...present.  All we need to do is look at the numbers of 8, 15 and 22-year-olds struggling with autism, depression, ADHD, cyberbullying, anxiety and more, and the facts are clear.

I applaud every company moving toward or already providing paid parental leave.  And those offering on-site childcare, maternity massages, lactation rooms, and more are surely adding to supports being provided.  Yet companies need to recognize that parenting and the needs of working parents are for many years vs. months or a few short years.  Unless and until this lens opens all the way, we're only seeing a small part of a much larger picture and are sorely missing the mark.  The truth is that parental leave for new parents is important.  For veteran parents, it's essential.

Parenting Older Children With Special Needs: And It Gets Harder As They Get Older

I'm a major Crosby, Stills, Nash & Young fan and their song "See The Changes" tops my list of favorites.  So I hope they won't mind that I've changed the word "we" to "they" because I'm talking about children. 

It does get harder as they get older...much harder. Ask any parent and they'll tell you in vivid detail the age and stage that was or is the hardest.  Every parent knows well the challenges of raising children today, so when an Autism Spectrum Disorder, learning difference, or mental health issue is part of the equation, the concerns intensify.  And parenting gets harder.  Much harder.

During the preschool and elementary years, bullying and exclusion often occur, creating indelible issues related to the child's sense of self plus issues with peers frequently emerge.  Move into middle and high school and the challenges intensify as social media and texting, sexting, gaming, and posting plus dating and driving arrive, making a complicated picture even more complex.

These school years alone and the issues that emerge are enough to weaken even the strongest parent, but it doesn't end with high school graduation.  The real challenges emerge when college and life arrive and services and supports fade away.

Parents of younger children work hard to build a foundation to help prepare them for the teen years.  Parents of teens say that their worry (and hope) is that they have solid footing for what comes next.  And parents of young adults quickly realize that the challenges of life are often greater than the preparation.  And this includes in college, where the "safety net" is often larger and looser, creating more risks and dilemmas.  And when this happens, the real struggles begin.

Just as life gets harder as we get older, it also gets harder as they get older too.  Watching a toddler stumble is expected.  Watching a teen do so is something entirely different.  The world suddenly expects more from them.  They expect more from themselves.  And parents hold their breath because getting older is only part of it...

Enough With College Bashing

 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

Anyone else aware of the increasing level of college bashing going on lately?  The articles and news features on whether college remains relevant in today's tech-driven world and whether it's worth the costs.  It seems to me that these views are looking at college through a very narrow lens.

No question about it -- the institution of college has reached a tipping point particularly in terms of costs and access.  Yet conveying messages discouraging teens from pursuing the goal or that college isn't worth their time, work, or investment isn't a balanced message at all.  Different perspectives are based upon differing experiences - not right or wrong, but simply different.  But there's a big difference between sharing differing points of view and basically trashing the institution entirely.

Many parents, from their children's earliest years, already have the hope for college on the horizon, and many started stashing away cash while their children were just learning to read.  College has been, and continues to be, a goal shared by millions of parents and their children.  And why shouldn't it be.

Let's be honest...no parent (including this one) wants to see their child in debt that they'll be struggling to pay down until they reach retirement.  Few parents send their children to college expecting four years of binge drinking and failing grades.  And most parents raise their children to understand that anything worth achieving requires hard work and sacrifice.  Yet there are voices, many of them, singing the tune that college isn't worth it.  Any of it.

Here's how I see it.  College is the time in a young person's life when they're encouraged to explore new areas, challenge their assumptions, engage in discussions that stretch their thinking, and collaborate with people -- professors and students alike -- who expand their horizons.  It's a time when learning occurs in ways that expose young people to experiences that form the foundation for what comes next...life.  And it's when children grow into young adults in ways that cannot be measured by a paycheck.

There's no question that college isn't for everyone.  Many successful people do well without it and many make other choices.  A man I worked with many years ago personified success -- several homes, foreign cars, vast travel, philanthropic efforts.  And late one afternoon, he shared with me his greatest regret in life even after achieving what most of us would call the pinnacle of success...not attending college.  No matter his achievements, the fact that he didn't attend college was the thing that overshadowed all else.

Every person has a different life path.  College has been and remains one aspired to and chosen by many.  Of course the "real life" issues of cost and expansion of access requires solutions, but losing sight of the things more difficult to measure and quantify...that college prepares young people to enter and sustain an educated, diverse, capable, flexible, and collaborative society, is doing them a terrible disservice.

It's true that not all goals are achievable.  Yet some goals and the experiences that come with achieving them frame and remain with us forever.  The people we become -- our jobs, titles, and income, may define us well into adulthood, yet college sets the tone for what comes next.  Few other things in life have the same lasting power.

It's True...Working Women Are Mothers Too

 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

If you're a woman who works outside of the home and a mother as well, you get it in spades.  If not, it's time to. 

Women are more than 50% of the workforce.  And many of these same women are also mothers, raising children.  Problem is, the business world doesn't seem to fully understand what this means.  Yet.

There are some areas where businesses are starting to listen and beginning to understand -- wage equality, paid family leave, and the push for more women in leadership positions.  All important issues, not only for women but for our society as a whole.  

And most of us would agree that work/life issues as they impact working mothers (and fathers) are "at the table" today in many business discussions.  Steps forward.  Yet particularly for working mothers, the steps aren't far enough. 

The realities are that millions of working mothers are unable to achieve and maintain any modicum of work flexibility and many fail to take or use their full maternity leave.  Many are being challenged in terms of their commitment to their job when a need arises regarding their children (and make no mistake about it...these "needs" continue for 21+ years).  And still others - and there are more than is known - are being forced, often in subtle but powerful ways, to choose between their careers/jobs and being a parent. 

I don't know anyone who would want to face these kinds of choices.

Let's think about a few things:

Do companies truly believe that it's still okay, in 2018, for such struggles to exist for working mothers?   Would those in senior leadership accept the same for their wives, daughters, or granddaughters?  And yes, I realize that women can be the ones exerting this pressure too.

Do companies think choosing motherhood means that their education and experience becomes an afterthought or that the time they've spent investing in and creating their careers suddenly has no meaning?  Or value?

Do companies not understand the big picture and think that the time (measured in years) working mothers spend raising and instilling values and qualities in their children - the same ones companies want in their future employees ... things like integrity, honesty, respect and kindness - happens in only a brief few months?  Or by age 5?

There are firms developing career reentry initiatives to help working mothers return to the workforce after spending "x" number of years raising their children.  And recommendations are now seeing the light of day for how to address a gap in a resume when it relates to parenting.   Why is stating that raising the next generation is something to be ashamed of, to excuse, or to hide?  Since when did raising a child equate to something to apologize for?  What messages are we giving and being forced to accept? 

Working women who are mothers deserve to have their abilities and their needs supported, both as parents and employees.  And this happens when "family-friendly" companies as defined by their culture and behaviors up and down the organization resonate with every working mother no matter their position, title or role.  Policies are great, but don't replace attitudes and actions.

For those companies truly embracing working mothers and not asking or expecting an explanation or apology about their life choices or how they've spent or spend their time, hats off.  And for those who aren't there yet, it's okay...we aren't going anywhere and our voices will continue to be heard.

 

Working Caregiving Parents Need Time

 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

Working parents are handling two jobs - their work and their children, a full plate for almost every parent.  Add an 8-year-old with autism, an 11-year-old with a learning disability, or a 17-year-old with depression and the work/life needs are often insurmountable. 

There's all the "typical" parenting responsibilities, which are often anything but typical, plus another layer of needs ranging from facilitating their child’s services and supports to managing ongoing school issues; it's a life of complexities that few understand and are often managed without help.

The Gift of Time

Respite care, or having an hour to themselves, is one of the most important ways parent caregivers can continue doing what they do.  That saying about putting on your own oxygen mask before you can help another definitely holds true here.  Yet there's often no one to help these working parents even reach for their mask no less give them a few minutes to breathe. 

The Caregiver Action Network has information that provides resources to help working caregivers which applies to exceptional caregiving for children as well as aging parents.  And many are handling both - caring for a child with special needs and for an aging parent as well. 

If someone in your life is dealing with these issues, the best way you can show them you're aware and care is with the gift of time.  It can be an hour to shower or time to take a walk.  Or simply to have some quiet time to try to regroup and refresh.  Don't wait for them to ask or for a crisis to arise.  Having a little "me" time can make all the difference.

School Starts…And So Does Special Education

Riding a roller coaster with your child can be exhilarating, yet living on one from September through June is another thing entirely.  The truth is, this is life for many parents of children with special education needs, and working parents often have the added pressures of work/life conflicts.  

For some children, the start of a new school year can be terrific while for others, it’s a nightmare from day one.  No doubt about it…parental preparation is key.  

Often times, even with an IEP or 504 in place, issues emerge quickly with parents hearing things like this:

  • My child's teacher refuses to allow my son to chew special items we provided from home to help him focus.
     
  • We clearly explained at our spring IEP meeting that our daughter needs extra time to transition from class to class, yet we’ve received a note saying that she’s been late for class several times.
     
  • Even though we agreed that homework will be limited to 30 minutes per night, we’re already spending triple that amount of time and behaviors are starting.

Sound familiar?  

Here are three strategies to help:

  1. If your child shows signs early in September that things are not working, reconvene your IEP team.  You should convene in September or early October anyway as your child has certainly changed over the summer and issues agreed upon in April may no longer apply. 
     
  2. Speaking of summer, if your child made progress or regressed during this time, 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.
     
  3. If your child has been privately evaluated or re-evaluated over the summer and you understand and agree with the report, provide a copy 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 advice is this – remember that your child is continually changing and as such, your child's IEP may need to change as well.  It is a “living document” that must be reviewed and revised to reflect how your child is developing.

Your child's key advocate is you, so remember the 3 P’s:  Be prepared.  Be proactive.  And pace yourself.   This great business quote certainly applies -- "What you want, you will get.  But you have to want it enough to go about getting it."

Students & Moral Identities

Many would agree that the issue of character is a focus not only in today's political climate, but also in our schools, homes, and communities.

School has been the place where academic instruction and learning is the focus, yet over time, the focus on teaching understanding, inclusion, and mutual respect has been elevated to a new level of importance as well. As it should.

compass2.jpg

Teaching children how to navigate through life requires far more than knowing how to recite learned information. It requires knowing how to demonstrate tolerance, how to work collaboratively, and how to stand up for others when they are being harmed or targeted. Or ignored. And far more.

Do you see students as lacking a moral compass? Do you think character education is as important as academics? What do you think about this?

Schools Are Failing To Develop Students With Moral Identities

Think Twice Before Holding Your Child Back

The issue of "holding students back" has been one parents have faced for years, and it remains one that is frequently recommended or that parents themselves request.

For parents of students receiving special education services in school, care must be taken - and input from independent clinicians should be secured - before agreeing to this or making this decision.

Failure to make progress in any area is not a reason to consider having your child repeat a grade. Rather, careful evaluation of your child's IEP including all goals, services, and supports would be warranted first as other decisions may be more appropriate to ensure that your child is making and sustaining measurable progress in school.

kid-school.jpg

Words Matter and Respect Is Everything

Today more than ever, there's a need to remember two things: words matter and respect is everything.

We know that things start at the top, whether in companies, organizations, or yes, politics, and that if leadership fails to demonstrate respect for others via words and actions, it becomes acceptable for others to act similarly.

be-kind.jpg

We at Education Navigation understand that millions of children struggle to garner respect because of their differences, and that these children are often on the receiving end of words that have an immediate sting, yet last a lifetime. We work to help ensure that children are included, have equal opportunities, are recognized for their skills and strengths, and are not on the receiving end of disparaging words and actions. And we teach those with outdated, biased, and harmful views how to think and behave differently. It simply makes the world a better place for everyone.

As parents and adults, there has never been a time when teaching and modeling appropriate words and behavior matters more. And this isn't only to our children, but to those around them as well. Extended families, teachers, neighbors, the community...matters not where the gaps exist, we must be prepared to fill them. And we must also be aware of our own words and actions as well.

Demonstrating that acceptance, respect, and inclusion matters more than wealth or fame has to be a priority. That "do unto others" is more than a saying. That maligning, mocking, or being hurtful simply isn't okay. And we must make it just as important to teach our sons, brothers, and husbands to respect girls and women as it is to teach our daughters, sisters, and friends to respect themselves.

It's easy to focus on the outrage many are feeling (including myself) about the pattern of words and actions of an individual who should be demonstrating the best vs. the worst, yet we need to focus instead on showing in our everyday interactions what genuine respect looks like. It matters more today than ever. Our children are watching. As is the world.

The Strain Of Parenting A Child With Special Needs

It may seem obvious that parenting a child with special needs requires more - more time, more patience...just more.  And you'd be right.  It does.  Yet like many children whose needs may be hidden from view, so are the realities facing parents when caring for their child's special needs overtakes all else.

A parent shared with me that her marriage was ending.  The strain of what is often referred to as "exceptional caregiving" tore the fabric of their marriage beyond repair.  The attention their child needed was unrelenting, and attempts to achieve any sense of marital balance was intensified by extended family and friends not understanding their realities.  Battling for their child became all-encompassing, and there was nothing left for them as a couple.

The Realities

While I'd like to say this story is rare, it's not.  Time and time again, parents have shared that they thought their partnership was strong until exceptional caregiving became the central role in their lives.  Maybe there were some small cracks developing early on, but they refused to believe that they couldn't withstand the strain. 

When this new "world order" becomes the daily reality, even the strongest husband and wife can sometimes cope no longer.  It's a complex emotional landscape - denial, remorse, fear, guilt, uncertainty, feelings of helplessness, lost dreams, and even those thoughts that they dare never say.  Why me and why us.

Life Through A New Lens

The entire work and family picture takes on new meaning when a child with autism, ADHD, or mental health issues, for example, becomes the focus... 

  • Career changes.  One parent may no longer be able to work.  A client meeting and an urgent call from school collide, creating work/life conflicts.

  • Financial pressures.  Paying for mounting expenses - often hundreds or thousands of dollars a month - when family income may be halved or when expenses stretch resources to the limit. 

  • Family and siblings.  Balancing the child's continuous needs while tending to other children in the family and handling family questions and comments.

  • "Alone time."  Securing a babysitter or caregiver (including loving grandparents) who understand and can provide non-judgmental assistance is often difficult at best.

Day trips need considerable preparation.

Vacations require extensive planning and tension often results.

Communication issues emerge and quality "couple time" can be rare at best.

Priorities shift.  Plans ended.  The partnership crumbles.

It's no surprise that holding everything together becomes a herculean task, one that not every parent can manage without considerable support and even then, it may become impossible.

Warriors

Every parent parents differently.  And when a child with special needs becomes the cog in the family wheel, parents become warriors, often waging the battle at different levels and in different ways.  Sometimes, even the most valiant parent finds that they can battle no longer.  Losing themselves in the process is commonplace.  Not by design, but by situation.

When a marriage ends, the reality is that each parent must still play a pivotal role - or combination of roles - to help their child.  Case manager, home therapist, scheduler, advocate, first responder.  The assignment of roles may change, but the importance of each parent to the whole does not.

Your efforts and sacrifices, both individually and as parents, matter.  You remain Mom and Dad, needing to work together to help your child.  The strain on a marriage and the emotional fallout for each parent is very real.  And painful.  Yet don't lose sight of all you have done and are continuing to do to help your child move ahead.  For while your struggles like those of your child may be hidden, your rewards most certainly are not.

EN Blog - Parents (Free).jpg

Villanova's Victory and One Amazing Mother

 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

There's so much to be said about Villanova's incredible victory last night.  I've never quite seen teamwork like this before.   And with each replay of those final seconds (which I watched until 1:00 in the morning), you simply can't help but smile and rejoice in their victory.

These amazing young men could teach companies a thing or two about what true collaboration looks like.  About what the word "team" mean.  About how the success of the group hinges on allowing -- and encouraging -- others to shine.  This is a business case study waiting to happen.

Yet there's something more about Villanova's victory that hits the heart.  It's that the amazing shot made by Kris Jenkins makes this story -- his story -- one for the ages.

They say that behind every man is a strong woman, and if ever there was one, it's his mother.  This woman personifies the definition of the word "selfless," making a life-changing decision that gave her son an opportunity for a better life.   

Yes, she taught him basketball at a young age and these early skills surely helped over the years, yet most parents try to impart knowledge in their children.   But when she saw that life was creating difficulties for her son, she opened her arms and asked another family to raise him so he could have a shot.  At life.

Can you imagine?  Having such love for your child that you decide that giving him to another family would be in his best interest.  Talk about strength of character and fortitude.

Every parent makes sacrifices for their children...it comes with the role.  Yet a sacrifice like this goes beyond.

The pride we all feel, including those of us in Philadelphia area, at what these amazing young men accomplished is palpable.  And what can't be forgotten is that behind each of these students are parents who gave their children the chance to succeed in ways that will carry them for the rest of their lives.

In the afterglow of this victory, admiration for Kris Jenkins' mother and the family that welcomed this young man into their lives is really the story behind the story.  Such generosity of heart changed this young man's life.  And everyone who surrounded him.

So congratulations to an amazing team of young men...and to one mother whose devotion to and love for her son has to have our utmost respect and admiration.

Brussels Attacks and Our Children

 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

What do we tell our children about the Brussels attacks?

How do we explain to them, whether they're 8 or 15, what happened?  Again.

How do we keep our fears in check when they're there...right at the surface?

We know that in today's world of social media and a 24/7 news cycle, we can't shield them from things like this.  Sure, we try... overseeing their online activities, vetting their friends, making sure they're checking in with us and visa versa.  And most of the time, we do a pretty good job of it.  And then another day of senseless attacks happens and then what?

We learn that innocent people a world away have been hurt.  We feel a sense of unease and want our children near.  We hear "thoughts and prayers" one more time while we feel sorrow for the families whose lives have been shattered on another typical morning.  Like our typical mornings.  We again hear it's a "dark day" when we're trying to keep our children in the light.

What do we tell our children when we don't even know what to tell ourselves?

How do we reassure them that they're safe? 

To most of our children, Paris and Brussels are a world away.  San Bernadino is not. 

We do our best to handle our own daily struggles and issues, yet how can we not worry about the immediate and longer-term impact all of this is having on our children?  Their sense of security.  Their mental health.  Their ability to grasp such uncertainty.

So I ask again...what do we tell them?

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.

Worrying...What Parents Do

 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 often find myself thinking back to when my child was a newborn. How could such a tiny human being possibly be kept safe and how could I make sure of it.  Such an overwhelming feeling of vulnerability, mine and his.  And the worrying began.

I think back to driving 45 vs. 60 mph as I would look in the rearview mirror at him in his car seat.  Cradling his head when the wind was blowing after he would leap into my arms to get out of the cold.  Watching him on his bike without training wheels and hoping for no broken bones.  Advocating for him in school when other kids thought bullying was fun.

I remember late nights - even when he was a teen - as I would check on him sleeping, feeling that all was right in the world because he was home, in his bed, and safe.  I wondered how I could safely carry him through a world that seemed poised to challenge his gentle nature and innocence.  I was intent on keeping him safe.  No matter what.  

But the world was bigger than I was and life took hold.  The school years went by and with the arrival of college came the reality that my ability to protect him had just about slipped away.  Only thing was, my worries had not.  If anything, they were greater. 

Incidents on college campuses, not knowing his whereabouts, being unable to reach him via text.  Yes, of course I know it's part of the transition to young adulthood and no, I wasn't sitting by the door biting my nails, but my worries were palpable.  And some for good reason.  I really thought it would get easier when he got older, but I was wrong. 

The worries change as our children do.  First, it's school, friends, and camp that may worry us.  Then it's social media, dating risks, and mental health issues that do worry us.  And then it becomes the unknown and those things we hope never happen that most definitely worry us.  Truth is, the worrying never ends.  We may not wear it on our face every day, but it's there, right behind the smile.

We send our children out in the world to do what we've encouraged them to do...learn, explore, and experience.  We urge them to be smart, safe, and aware. We give them roots, as the saying goes, and also wings, hoping our safety net is positioned right beneath them at just the right place and moment should something happen.  But often it's not.  And then, another tragedy occurs and if you're anything like me, all your strategies of parenting a young adult fly right out the window and you want your child home.  In footy pajamas.  In their bed.  Safe.  No matter their age.

It's easy for some to say, "They're adults now" or "Your job is done," yet the truth is, for most parents, the worrying never ends.  Whether they're a mile away or 10 states away.  If only I could figure out how to replace the safety net with that protective bubble I used to think about so many years ago...

CEOs and Work-Life...A Hidden Need

Earlier this week, I participated in a podcast on WorkLife HUB, an international broadcast focusing on the work/life arena.  Our discussion revolved around working parents who have children with autism, ADD, learning disabilities and mental health needs and how employees are struggling with these exceptional caregiving responsibilities both at work and at home. 

We discussed a number of topics, including the obstacles facing employees in terms of disclosing to their managers and colleagues that they have a child or teen with special needs.  We touched on the fact that this is now an issue impacting mothers and fathers alike vs. being a “mommy” issue, and that parents are leaving the workforce because the demands – e.g. time, resources -- are simply too great.

One Piece Of Advice To CEOs

At the end of the podcast, I was asked what one piece of advice I would like to share with CEOs.  It was this -- that while CEOs may not see something, it doesn't mean that it doesn't existWhat I meant by this was that employees, particularly working parents and especially those whose children have ongoing and complex needs, tend not to discuss their lives and their daily juggling.  These issues are hidden from the people who need to know about it the most, because they're the ones who can bring about the organizational change and acceptance needed. 

It’s Time To Normalize

Ask any working parent raising a child with autism, depression, or any number of diagnoses and they'll tell you that they could use 12 more hours in a day and another set of hands at a minimum.  Yet until we "normalize" these issues and recognize that these unseen needs are often more intense and demanding than those we can readily see or discuss, these employees will continue to play - and live - a "smoke and mirrors" existence.  CEOs need to know so they can lead the changes needed.

With Microsoft just announcing that they are actively recruiting employees with autism, the shift is underway.  Companies are recognizing that a diagnosis does not mean unemployable and that many with autism and other unique needs can be valuable and valued employees.  Now companies need to know that it's today's working parents who are raising these children and they need support themselves.  And this starts with the support of the people at the top.

To listen to the podcast mentioned in this blog post, please click HERE.

-Debra I. Schafer

 

A HERCULEAN TASK – A PODCAST WITH DEBRA SCHAFER

A HERCULEAN TASK – A PODCAST WITH DEBRA SCHAFER

THE WORKLIFE HUB

Debra Schafer, the founder and CEO of Education Navigation, and the 2012 winner of the Rising Star Award of the WorldatWork Alliance for Work/Life Progress imparts important advice on employees with a child with special needs.