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...

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."

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.

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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?

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...

Autism Isn't A Day Or Month

I'm a big supporter of raising awareness of causes and issues, encouraging people to rally to bring about change.  Yet when it comes to autism, a day or a month simply won't suffice. On various media outlets over the past few days, individuals have been sharing their insights into the realities of autism.  Some were identified as "experts" which, in my opinion, is a term that needs to be affixed carefully.  There was one - a mother - who spoke about raising her child with autism, sharing the realities with an emotional overlay that was as real as it gets.  This is the true expert.

Two of the other expert perspectives in particular stood out to me, each warranting a response and further discussion.  And while there may be those who might question from where I am gleaning my insights or upon what soapbox I'm standing, I'll say that after spending 15+ years in the trenches in this arena both professionally and personally, I'll take my chances.

One of the experts I'm referencing stated that parents need to push for services for their children.  Absolutely true.  Could not agree more nor cannot overemphasize the importance of parents taking charge in this regard.  Yet there was, and continues to be, a critical oversight here and one that is consistently overlooked.  It's that parents need to learn *how* to push for services for their children, particularly in school where the lion's share of these services need to be accessed.

There is an assumption, and a misplaced one at that, that parents automatically or miraculously acquire these skills ... that somehow these skills simply appear after their child receives an autism spectrum diagnosis.  And this assumption even occurs with parents themselves who, in their jobs or professions, may have skills that they "assume" will transfer to parent advocacy and school interactions, but sadly do not.

Just like the social skills/social thinking that their children need to learn through direct instruction, parents also need to be taught how to navigate through the educational arena in order to secure the services that experts continue to state (and parents know) their children need.  And need now.  I often say that special education requires a master's level of skills that continue to evolve over time.  Telling parents that they need to work hard over the long haul to get their children what they need is one thing.  Teaching them how to do so is another thing entirely.

The other expert on a different media outlet stated that as children reach high school, they need to learn life skills.  What?  As they reach high school?  Ever hear the expression "too little, too late?"  Here's what's wrong with this statement.

Part 1 -- we first need to acknowledge that there's a stigma attached to the phrase "life skills" so we need to rename it.  Parents (and others) equate it with things that, for many children on the autism spectrum including those with Asperger's Syndrome, simply do not apply.  But there's another huge bucket of life skills that they most definitely *do* need to learn (and be taught) in order to have any hope of successfully transitioning after high school graduation into college, employment, or independent living.  Once we eliminate the barriers created by the words "life skills" and broaden what it means, we can then begin to ensure that these skills are taught starting in preschool...and for all children.

Part 2 -- when the teen reaches high school, it's far too late to start thinking about the "life skills" they will need to transition into the adult world.  Even though transition planning is now supposed to begin at age 14, most schools pay little attention to the skills our children need to live as adults in the world.  We don't start to teach reading when the child is 12 years old, so why would we wait until the child is a teen to begin teaching these critical skills?  Skills that are considered "life skills" need to hold equal weight with academic skills in terms of their importance.  And for some children, they're even more important.  This isn't an either/or scenario and parents should not be forced to choose (and this happens frequently) between helping their child improve their reading level or how to complete a job application or to live with a roommate in college.

The attention to autism this month and any month helps to raise the volume of discussion about a diagnosis impacting families, businesses, and our society.  And whether you believe the recent CDC stats or not, the reality is that there are millions of children and teens today with an autism spectrum diagnosis growing up to become part of our adult world.  As future employees, tomorrow's college students, and the next generation of parents themselves.

Examining how we're approaching autism is not an easy topic nor task, but real change is never easy.  What it does require is for us to honestly assess whether we're providing parents with what they need to effectively help their children succeed in school and beyond.  And it also requires us to closely examine whether we're truly doing what we need to do to help our children reach adulthood as prepared as possible.  This requires more than a day or month.  It requires a lifetime.

 

Permission Granted

Here's how I see it...there are three types of people - those who ask for permission, those who don't and just back away from whatever it is, and those who just do and deal with the consequences later. The "typecasting" typically starts in childhood - e.g. asking to stay up past 9:00 or just doing it and dealing with the parental wrath later.  We were taught that the act of asking shows good manners and respect for the other person, and we teach the same to our kids as what parent doesn't want their child to be considered well-mannered and respectful.  Yet here's the thing ... the "real lesson" is giving the *permission* to ask.  It's the step that precedes "ask and ye shall receive" because if you don't know it's okay to ask, many simply don't.

Believe it or not, there are millions of parents who are reluctant to ask their child's teacher (or principal or IEP team members) the questions that fall into the "5W's" category:  Who is bullying my son at lunch; what is being done to help my daughter develop her organizational skills; where is my child's aide during transitions when problems are continuing to occur; when will we receive the data being collected; why is my son still reading well below grade level.  And we haven't even touched on the "h" question - how are you going to help my child learn social skills or how is it that my child's IEP goals are repeated from year to year.  All questions that parents *must* ask, yet far too many appear to be hindered by the asking process because they are waiting for permission to do so.

Some of the reluctance to ask comes from fear... of questioning the "experts"...of retaliation...of being labeled one of "those parents".  Yet fear is not a good enough reason not to ask, and certainly not when your child is struggling in school.  Asking is the conduit to information and it is - or needs to become - an ongoing activity.  This is one area - and time - where parents need to stop worrying about how they'll be perceived and start realizing that their job is to ask...and to keep asking.

So consider this the blanket "green light" to ask...for answers, information, explanations, data, reports...whatever it is that you need.  And if you're not sure exactly what you need, ask for everything involving your child - records, work samples, charts...everything.  Because here's the reality...I guarantee that when a parent walks out of a physician's office after hearing their child has autism or a reading evaluator's office with a diagnosis of dyslexia, one of the first "out-of-the-gate" responses (after possibly shock) is to ask...everything.   There's no difference when it comes to school.

The only way a parent can truly become an advocate for their child and the "true expert" about what's happening in school is to ask...and ask often.  And the path to asking begins with having the permission to do so.  Permission granted.

It's All About Having Choices

Walk down the aisle of the supermarket and what do you see?  Choices.  More corn flakes, types of ice cream, and varieties of toilet paper than anyone needs.  Yet it's there...choices.  The reasons (and this isn't a marketing discussion) involve wanting to target and satisfy various preferences since not everyone eats whole wheat bread or wants shredded cheese.  So why all the fighting about education? Listened to another discussion on MSNBC yesterday about public education.  Education Nation is one of their signature features and I applaud them (and everyone) who places education at the top of the list.  Yet what I seem to keep hearing is that public education is *the* way - that it's the only type of education that deserves our attention, funding, and resources.  The hard work being done to turn the tide in our struggling public schools is no different than the work being done in charter or alternative schools.  Each are working to meet the education needs of our children, albeit differently.  So if "choice" defines our society, why is education any different?  What makes public education better than any other education option and, as importantly, shouldn't the choices parents exercise in this regard receive equal attention - and respect - for the work they, too, are doing to educate our children?

I understand the premise of public education and indeed there are many districts, schools, and teachers doing a terrific job of educating our children in these settings.  But just like soy products and scented detergent aren't right for everyone, the same applies to education.  School isn't a one-size-fits-all issue and this certainly applies when we talk about, for example, the types of instruction and environment within which education occurs.  Children have different learning styles and function better in certain settings when their individual needs are met.  And in order to meet them, there have to be choices.  Otherwise, it's the old "trying to fit a square peg in a round hole" adage still at work.

There are kids who thrive in large public schools yet there are others who find success in smaller charter schools.  There are parents who choose religious education for their children and others who would opt for private school if provided with this option.   Each option is worthy of our attention and support because if it was your child struggling in their current educational placement, wouldn't you want viable choices to evaluate?  I know I did.  The point is that today, education is not one thing but rather a spectrum of options.  The days of school equating to all children attending their local public school are over.  And thankfully so.

If the goal is to satisfy the need for our children to learn and if the reality is that every child learns differently, choice must be part of the discussion.  And if the reality is that environment is a key factor to a child's ability to learn, then it follows that having choices vs. assuming that public school - or any option - is *the* answer is the only way.  Thirty years ago, the choices available for parents in evaluating school options for their children were slim at best; today we have a range of options, making for a far richer "shopping" experience.

The bottom-line goal is to help ensure that every child has the opportunity to succeed in school.  And because we define success differently for everyone, we must define education similarly as well.  My support for education runs broad and deep in all its forms, yet I equally support the word that needs to follow it...choice.

 

Independence...A Day Or A Life

July 4th...a day commemorating our independence.  Most of us never think about our independence because we typically just make our own choices and do as we please.  We take for granted that we can go here and there, do this and that ... all at will. But if you think about the definition of independence as it applies to children with autism and other diagnoses  - not relying on another or others for aid or support - the word suddenly takes on a whole new meaning.   And while independence is defined differently for every child, the process of working toward this goal remains the same.  It's called hard work, never saying quit, and keeping your eyes firmly on the prize.

Not every child will reach the plateau of total independence (true for children without a diagnosis as well).  But, do you know how many children have been - and still are - thought to lack the ability to *be* independent at any level because of an obstacle and barrier (i.e. their diagnosis) that others believe precludes achieving this goal?  And do you know how many have proven these people wrong?

For many, independence is celebrated as a day with family barbeques and fireworks.  For many others, it's a life goal that often starts in childhood, continuing through adolescence and right into young adulthood.  It's what parents "in the trenches" are fighting for every day, refusing to relent to the labels or naysayers who seem to know what the future holds.  They don't.

For the millions of children (and their parents) who are striving to achieve the milestone of independence, think of tomorrow as a celebration of you and everything you're working so hard to achieve.  Nothing worth achieving comes without true effort and you continuously show the rest of the world what this is truly all about.

Required, Desired...Enough With Semantics. It's Needed

I know...school's out so who wants to think about it right now.  But here's the thing - there's a situation impacting millions of children and their ability to succeed in school.  And the implications go beyond high school graduation.  Many parents understand it, yet many are struggling to get beyond it. Decisions are being made by schools every day about whether a child should receive "x" service or support that they clearly need based upon whether someone believes it's "required" or "desired."   And I'm not talking here about what special education laws or IEPs dictate.

Let's take tutoring over the summer, for example, when a child is struggling with reading.  Many schools (but not all) would say that it's required because they're accountable, particularly if the child has an IEP, for helping the child read at grade level.  So many schools provide this support.  Now let's look at social issues - e.g. the ability to have a conversation with a peer or the ability to interpret non-verbal cues.  Many would say that this is less of a necessity (i.e. it's not required) so no need to address it over the summer...or even during the school year.

Not a week goes by when a parent doesn't ask me this question - "Can we put social skills on our child's IEP?"   Somehow the message that academics are the only thing that matters remains pervasive even though anyone would say that living in a social world requires social skills and understanding.  It seems as though being able to read a college syllabus (certainly important) trumps being able to work on a team.  Since when?

We tend to categorize things in order to prioritize them - the basics before the flourishes.  The problem here is that the scale of priorities is painfully out of whack.  Schools are making decisions about what they believe are the "must have" vs.  "nice to have" skills with little grasp of the long-term ramifications of *not* developing skills that they see as less than critical.

Ranking academics above other skills using a "required or desired" model is failing students miserably, as it ignores the needs of many children in their quest for success in school and beyond.  And when a parent asks if social skills can be included on their child's IEP, it conveys plenty about the information they lack or the misinformation they're receiving.

I doubt that anyone would want a child to be unable to meet tomorrow's expectations in college or on the job because those who weren't looking or thinking ahead decided what was required.  Parents know, yet they are often ignored when these critical decisions are made.

Many struggling children grow into struggling adults.  And if the purpose of school is to prepare children for adulthood, we're failing them in this regard.  Forget the semantics.  If we want our struggling children to be ready to transition out of high school and into the "real world,"  it's time to see their needs today and plan for tomorrow.

Parents, Children, Autism, and Unconditional Love

Let me start by saying that I'm not a psychologist, sociologist, or expert on love.  I am, however, a parent and as such, have filled these roles and many more in the two decades since I went from being "me" to "we." Andrew Solomon's recently posted TED talk - "Love, no matter what" on parenting, children, differences, and unconditional love struck a number of chords.  How we need to embrace our children and their differences and how unconditional love means doing just this.  He spoke of the changes we as a society have undergone in terms of understanding and accepting our gay children, our children with Down's Syndrome, and our children with other differences and disabilities.  And while I agreed with much of his talk, there were two points of fairly strong disagreement, one of which follows.

Solomon stated that parents of children with autism who wish that their children did not have this diagnosis somehow fail the litmus test of unconditional love.  What?  Parents of autistic children don't love their children unconditionally?  Say it wasn't what he said.  But it was.

On my soapbox I climb once again to say... No parents understand the definition of unconditional love like parents of children with autism.

I don't need to revisit again what I've expressed so many times before...the hours, sacrifices, work/life conflicts, financial strain, family upheaval...all the things that define parenting children, teens, and young adults in a world where they struggle at best to meet its demands.  But I do need to ensure that anyone who may not understand why parents would "wish" their children did not have this diagnosis, understands it now.

Parents of autistic children see their children's struggles every day in ways that clinicians, teachers, and others cannot.  They see them from sunrise to sunset.  They know that the weather, clothing, food, sounds, movement, people, activities, environments, and a host of other day-to-day situations create chaos for their children.  Does anyone think these parents may "wish" this wasn't the case for their children?  Does anyone think these parents may "wish" their children had friends?  Could speak?  Could drive?  Live independently?  Work?

If parents of children with autism wish anything, it's that their children did not have these struggles or needs.  They wish for anything - something - to lessen their children's pain.  But the wishing has nothing whatsoever to do with love.  And certainly not unconditional love.  Parents of children with autism *define* unconditional love and epitomize what this truly means.  They could also teach a lesson or two to many other parents as well.

We all wish for things.   For life to be easier.  For money to be more.  For family to be well.  And yes, parents of children with autism do wish for things too.  That their 4th Grader would be invited to a classmate's birthday party.  That their 8th Grader would be asked to be in the science club.  That their 12th Grader would be able to attend college.  But the one wish they don't have is wishing that their children were different so their love for them would then be without restrictions or caveats.

It's this type of unconditional love that keeps parents of children with autism forging ahead, plowing through the difficulties, never taking "no" for an answer, exploring supports wide and far.  If wishing comes into play here at all, it's that these parents wish that their children may have every opportunity to live a life where *their* wishes can come true.  And their shot at doing so rests firmly on the shoulders of their parents who love them unconditionally.

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.

 

 

Struggling Kids Become Adults ... Then What?

Did you know that the costs to incarcerate someone is more than it is to educate them?  I'm sure this is the case in most states as would be the statistics that show that a fairly hefty percentage of the young adults and adults in prison have undiagnosed disabilities - learning, developmental, behavioral, emotional, mental. This isn't about scaring parents into thinking that their struggling children are heading to jail.  Rather, it's about asking parents to look toward the horizon, where high school graduation, driving, college, employment, and independent living comes into play.  It's about acknowledging that if your child is struggling today, they may well grow into a struggling adult.

No parent wants to know that their 4th Grader has dyslexia or their 9th Grader is bipolar.  No parent wants to think about how their 6th Grader is going to manage through the social challenges of middle school when their child has Asperger's Syndrome or how their gifted 12th Grader with ADHD is going to handle the demands of college.  But here's the reality - acknowledge and work to support it today, or know that the gaps grow wider and the consequences far more serious with each passing year.

Over the past few months, I've read actual posts from college students asking to pay others to write their college papers or take their online classes for them.  Nothing new as we've heard about this for some time.  And while I'll readily admit that some may be lazy or just not interested in doing the work, others may have been struggling with reading, writing, or math for years.   This creates enormous pressure for the child which morphs into serious challenges for them as adults, and while they learn ways to "smoke and mirror" their deficits, eventually the smoke clears and the mirror cracks.

Ask any college administrator about the increasing numbers of freshman who are taking remedial classes - and more than one or two and often for multiple semesters - because they are woefully deficient in basic academic skills and this tells us plenty.  Ask any college health services department about the exploding numbers of students seeking mental health counseling and this tells us plenty.  And ask any manager about the numbers of Gen Y employees who cannot write a well-developed report or develop a budget and this tells us plenty.   These issues didn't just appear...many have been hidden in plain sight for many for years.

Parents are stretched thin, often struggling to balance work and family with a host of other responsibilities.  And having just one more thing to do is often enough to tip the scale beyond being able to manage.  Yet I would bet that there isn't a parent who doesn't want their child to be able to live and function as a competent, self-sufficient adult.  For many, however, this is a goal that comes with additional requirements in order to achieve it.

Maybe your child won't be posting on Craigslist or a college Facebook page for someone to write their Sociology paper, and maybe your child won't find him/herself struggling with emotional issues that makes keeping a full-time job impossible.  But maybe they will.  Wouldn't it be better to look the needs in the face now, while they're young, instead of hoping they'll go away when they become young adults?  We give our children roots as well as wings to fly, but for many, they need far more.