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.

 

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...

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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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.

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...

Parental Leave ... Time For Parents To Be Parents

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

Could it be that we’re finally at a tipping point when it comes to parental leave?  I’m almost afraid to ask the question, but it’s long overdue. 

Supporting the needs of employees who are also parents is simply smart business.  Not only does it reduce costs (e.g. recruiting/replacement, absenteeism), but companies seem to forget a critical point when evaluating their support for (or objection to) paid leave and similar programs -- working parents are raising the next generation of employees, so doesn’t it make sense to give these children the benefit of parents who can be fully-present? 

I’ve been saying this for years…no working parent should have to choose between being a good employee and a good parent.  And many have had to make this choice for far too long.

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

Considering the fact that we rank along with Oman and Papua New Guinea as one of only three countries that does not provide paid parental leave, to say that the respect and support for working parents has been lacking would be a serious understatement.  Employees who are essentially juggling two full-time jobs, who excel at multi-tasking and problem-solving (two key competencies companies seek), and who are raising their children while helping to keep their companies profitable.  If I wasn't one myself, I'd be shaking my own head in amazement. 

There's no better way for companies to truly "walk the talk" than by recognizing the needs and providing supports for working parents over the lifecycle of their children's lives.  Some of these needs (e.g. raising a child with autism) are more complex, yet company support remains integral to retaining these top employees.  And this begins by providing parents the quality time they need with their children from the start.

Enter Intel’s new benefit - “bonding leave” - which provides employees (Moms and Dads alike) with eight weeks of paid leave to be with their families.  Add this to the 13 paid weeks that new mothers can take anytime within 12 months of their child’s birth, adoption, or foster care placement.  The result?  A company that gets it.

Whether it’s called parental leave, bonding leave, or anything else, if it allows working parents the time they and their children need to become what we want every family to be - a strong unit - without the paycheck worry, let’s call it anything we want as long as the end results are the same.

-Debra I. Schafer, CEO  

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.

 

Snap Out Of It...

I love this line from the film "Moonstruck," when Cher tells Nicholas Cage to snap out of it after he says he loves her (she is planning to marry his brother).  It's a favorite that I often use when a particular topic arises. The topic is labels and let me first say this...no one likes to be labeled anything.  Labels are restrictive and create barriers.  They convey things to others that are often incorrect and can be discriminatory.  But...they can also open doors and create avenues that may otherwise not be available to pursue.  And they also help to bring explanations and reason to things that may truly need clarity.

All this to say, it always confounds me when I hear a parent say that they know their child is struggling yet don't want to have them evaluated.  My initial reaction is to empathize, saying that I understand that finding out "why" can be scary and overwhelming.  It taps into fears of the unknown, of what we may *think* we know about something, and of what finding out will really mean.  But it takes less than 10 seconds to move from an empathetic reaction to a "snap out of it" response mode.

No parent wants to think or be told that their child has autism.  Or is bipolar.  Or has ADHD.  What parent would ever want their child to be "labeled" no less to face the reality that others will know about it too.  What parent would wish therapies or being pulled out of class for support on their child.  None.  But parents who resist or refuse to "face the music" need to realize a few facts:

  1. They need to separate their own preconceived notions and "what if's" from the realities facing their child.
  2. They need to recognize that every day, week, and month of delay is precious time wasted.
  3. They need to understand that the label is essential to securing the supports and services the child may need in school...and beyond.

When I hear a parent express their concerns, I ask whether they prefer speculation or knowing.  Whether the status quo is working.  Whether their child is on a trajectory of success or failure.  Of *course* every parent wants their child to be healthy and happy.  To get good grades, make friends, and be successful in the world.  These are foundational desires all parents share.

Yet many children have been struggling for years, taking a huge toll on the child in immeasurable ways.  Repeated "F's" on tests can be seen (and can be devastating to the child), but it's the things out of view - the sense of failure, of not feeling smart, of always having difficulties - these are the things that can take away a child's desire to even try anymore.  And it doesn't matter if the child is in 3rd Grade or is 15-years-old; feelings of despair accumulate and struggling saps the drive and hope for a better tomorrow out of the youngest of children.

Do parents who resist an evaluation and "label" think that the struggling is going to stop at will?  That the child is intentionally failing math, purposely not making friends, or planning to have behavioral issues in school?  Of course not.  And this is where the "snap out of it" message needs to be said...and heard.

It is incumbent upon parents of children for whom struggling defines their existence to put their own fears aside and mobilize.  With the end of the school year upon us, summer is the time to secure an evaluation and to plan for how to make things better in September and beyond. Yes, this may mean special education services, frequent meetings with school, and involvement of private clinicians and outside experts.  But which vision do you choose...pretending the issues don't exist, hoping they'll just go away with time, or telling your child that you're now "on the case" and that things are going to improve?

A label is words.  Dyslexia.  ADD.  Asperger's Syndrome.  They only have power if parents allow them to.  These words are also doorways to answers and strategies that will move the needle from failure to success, defined differently for every child.

If you happen to be one of the parents who have allowed your own fears to override getting the information - and diagnosis - your child needs, please...snap out of it.  Your child is depending upon you to do so.

Before She Knows It...

I was at Trader Joe's yesterday picking up a few items when this woman speaking loudly came walking toward me.  She was likely in her mid-60s with one of those Bluetooth contraptions in her ear ... you know, the thing that often leaves people (including me) thinking that the person is talking to you when they're actually talking to someone miles away.  At first I thought this was the case when I realized she was talking to an older man walking right behind her. It took 30 seconds to size-up the situation - she was the grown daughter who had taken her father to the store for some needed items.  He was moving slowly and standing in odd places in the aisle, looking as if his nap had just ended or he needed a shower.  Not dirty but disheveled.  Bothering no one. She, on the other hand, was nicely dressed and wanted her father and the rest of the store to know that she wanted to be somewhere else.

At first when I heard her say, "I hate shopping," I thought she meant it as a general statement.  But she meant with him.  In a tone that was agitated and clearly not an "inside voice," her comments and statements continued ... "Dad...what are you doing?"  "Would you just stand here and stop moving."  "Why are you looking at bags of nuts...you don't eat them."  It was an endless barrage of these barbs along with overt sighs and complaints under her breath.  On and on this went with customers ignoring the entire situation, too wrapped up in whether to purchase the oriental pot stickers or tamales.

I stood there in total disbelief at the verbal abuse this man - this woman's father - was experiencing.  I kept trying to catch her eye to perhaps offer a gentle, "It's okay, it's your Dad" comment to her, but to no avail.  I then considered walking up to tell her to knock it off.  Then I considered informing the manager although questioned whether anything could or would be done.  Instead, I followed them around the store, pretending to be looking at items I never buy.

After making my few purchases, I waited outside until they emerged.  It was raining and she wanted him to wait near the front of the store while she went for the car.  For a moment I thought, "Ah...there you go" but her, "Can't I get away from you for a minute" comment brought me to tears.  Her father was visibly unsure about standing there alone, but her voice continued to raise as her yelling persisted.  To stop moving.  To listen.  To stand near the bags.  It was elder abuse, something I understood painfully well as my own father suffered the same when he was in a nursing home.

I'm typically an "act" person - stepping in when someone is in need.  Yet here I hesitated because I wasn't sure what to do.  I wanted to pull her aside and tell her to straighten up.  I wanted to tell her to look at her father to see how frail he was.  I wanted to tell her that she disgusted me.  Instead, I stood there to be sure he remained where she insisted he stay as she walked into the parking lot continuing to yell at him.  I returned to my car, outraged and in disbelief.

There's no way to know what stressors are in this woman's life or what happened to her over her lifetime.  Yet of this I am certain ... when our parents reach the age where they need us to parent them, we're obligated to do for them what they did for us when we were children - to care for and protect them and to keep them safe.  For whatever the reasons, this woman remains part of her elderly father's life and I can't help but wonder what he may have been thinking and feeling during this display of such disrespect and disdain.

One thought haunted me all day and continues...before she knows it, he'll be gone.  No more shopping.  No more talking.  No more visits.  No more anything.  The end.  Finished.  Over.  A relief to her?  Remorse?  Guilt?   Regardless, no more Dad.

Maybe they never had a good relationship.  But maybe at the twilight of his life, he needs her to help him live out the rest of his days with kindness, forgiveness, and peace.  We can't change yesterday and wounds surely remain.  Yet before she knows it, he'll be gone.  And then what...?

When One Small Step Is Anything But Small

People tend to believe that it's the big things in life that have the most significance, but I don't necessarily agree.  Small things often make the greatest impact, and one group of people know exactly what I mean. If you're the parent of a typical child, there are so many "firsts" and accomplishments that the small steps often get lost in the shuffle.  Not so for parents of children with an autism spectrum disorder.  For these parents, life is all about watching for the smallest possible step.  About knowing the minutes, days, and months of effort that went into making this step happen.  It's often only those closest to the child who can understand and appreciate what this is all about.

Ever sit and watch a flower bloom?  You rarely see anything, but look away for a day and the changes are often amazing.  Parents of children with autism spend much of their lives closely watching for that bloom to happen ... for that "one thing", that small step that will show them that their child is learning to speak, respond, play, understand.  And they see it when it happens.

This past week, I spoke with a parent who was sharing how her child was finally able to tolerate something that had been - up to that point - intolerable.  For most parents, this would have been seen as a "get over it" moment, but not for this parent.  It was a huge obstacle that impacted her child's ability to function and the family's ability to function as well.  Anyone who would say that a small step isn't a major milestone is someone whose life hasn't been touched by autism.

Think about it this way...most people stand back and look at life like admiring a huge mural painted on the side of a building.  But for parents of children with autism, they're standing right up close, seeing every single stroke of the brush.  When your child struggles on a daily basis in a world that assaults their senses and challenges their abilities, every step forward is anything but small.  These parents know what they're looking for and even if they don't, they still see when something changes or some progress is made.  That's because they're always looking and hoping for it.

That infamous line..."One small step for man, one giant leap for mankind" are words that ring true for each and every parent of a child with autism.  Every small step their child makes is a leap indeed, for it paves the way for a future of possibilities.  And possibility is that wonderful thing that keeps parents moving forward.

Life is about giving and receiving and I don't know any single group of individuals who give more than parents of children with autism.  So isn't it wonderful that one of the things they receive is the ability to see these small steps happen right before their eyes?  Whoever said that you can't watch a flower bloom never knew what they were looking for.

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.

 

 

What Are People Thinking...Or Not

Maybe it's just me, but I find myself shaking my head in disbelief at some of the words and comments that come out of the mouths of adults these days.  And to be honest, I ask myself,  "Who raised these people?" with increasing frequency too.  No, I'm not blaming parents for everything - I'm a parent too - but there's no way *not* to question it sometimes. Two weeks ago, it was a security guard at Whole Foods who told the sister of a young man with autism that he should be kept on a leash.  I was speechless.  No, I was fuming and wanted (still do) 15 minutes with this person.  And double that amount of time with CEO John Mackey (still do and have attempted the same).  I couldn't believe that anyone would think no less speak such words nor could I believe that someone could even think this about another human being.

Last week, I watched a child staring at a slightly older child in a wheelchair.  The parent stood there and watched his child doing the staring, never bending down to quietly say, "It's not nice to stare" nor attempting to explain to his child why the other child might not be able to walk.  It was the parent's responsibility to capture this as a "teaching moment" vs. basically giving his child staring rights.  I wanted to take this on myself.

And today I just read about a situation whereby a family in a restaurant asked for their table to be moved because, "Special kids need to be kept in special places."  This was regarding a child with Down Syndrome (fortunately the waiter refused to serve them - this man deserves a raise).   Can you imagine being the parents who overheard this statement about their own child?  Or being the child himself hearing it?  I'm still speechless yet close to foaming at the mouth with things to say.

I am not naive, but do know that adults/parents are role models for behavior and attitudes.  Children see and hear what we as parents do...the good and the bad, and this learning often translates into perpetuating thoughts and behaviors that should be extinguished.

I am not affixing blame, but rather assigning responsibility to those whose antiquated thinking requires an upgrade, even if it's the thinking of a child.  If we as parents don't understand something, we need to take it upon ourselves to learn.  And if we are unaware that our words are harming others, we need to be adult enough to let someone point it out.  Life is about learning and even old dogs can learn new tricks.

And I am not unaware that discrimination -- blatant or otherwise -- continues today.  But it's the short and long-term impact of such attitudes that can destroy a life.  "Sticks and stones" has never been an accurate saying in my book.

Children, teenagers, or adults who are on the receiving end of bullying, discrimination, or worse deserve better.  Parents raising children with disabilities and special needs deserve better.  Companies who employee individuals lacking the awareness and sensitivity to treat every person with respect and dignity deserve better.  And we as a society need to demand better.  The phrase "stop and think" has never applied more or resonated louder.  Words that tumble from a person's mouth can be weapons and we all know painfully well what weapons can do, don't we.

Carry You...

Many years ago, when my son wanted me to carry him, he would say, "Carry you?" and nothing more.  It was such a simple phrase yet little did I know the impact it would have so many years later. Today, after speaking with several parents whose children are really struggling, those two little words came to me as if my son had said them yesterday.   I'm not sure what triggered that memory, but it suddenly resonated with me differently.  As parents, we all carry our children yet it typically ends when they are either too heavy or too large to lift.  Not for parents of children with special needs.  The carrying continues for years and sometimes, for a lifetime.

These parents have the job of lifting their children and keeping them hoisted high above their heads at all costs.  And while their children need their strength to move forward, who lifts the parents?  Even the strongest parents find that sometimes, the weight is just too much.

As is the case with so many parents, one of them is completely exhausted...no fried, from months and months of endless struggle.  With school.  With family.  And yes, with their child as well.  From home to school and back again, the issues have continued mounting with little chance to catch a breath no less take a shower.  And this is on top of a full-time job that was asking for more yet giving less.

During our conversation, I told this parent that their job was to "carry you" -- meaning their child -- but that they also needed to be carried.  By a spouse, a parent, a friend -- by anyone able and willing to lift them, even briefly, so they can regain their strength to continue their march ahead.  Many parents never ask to be carried and many fail to notice that these parents are going down for the count.  Yet when we're talking about the parent of a 2nd grade child with autism or a 15-year-old with a learning disability, carrying is what it's really all about.

So if your life is touched by a parent who is struggling to carry it all, a little lift will help enormously.  They will continue to "carry you" (meaning their child), yet carrying them ... even for a brief time, will help them continue to put one foot in front of the other while lifting their child into the future.