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.

 

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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Hidden Disabilities -- 5 Things You Need to Know

Working parents with Special education Special needs children including Autism ADHD Learning disabilities  Employee benefits Employee assistance Employee support Voluntary benefits. 504 Plan, IEP Program

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

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

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

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

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

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

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

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

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

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

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.

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.

No Means No...Or Does It?

We all know that "no means no" and we play by that rule.  But, is there ever a need or reason to push back against the answer no?  In one critical area, yes. Ask any parent of a child in special education and they'll tell you just how many times they've heard the word no - or countless variations of the same - to requests, suggestions, and even demands made for something their child needs in school.  It could be an extra speech therapy session to work on social language skills or an aide to enable a bright child with Asperger's Syndrome to be fully included in school.  Maybe it's an alternative environment for lunch or a sensory integration evaluation.  No matter the "ask," the answer is often no.  But the story doesn't end here.

Over the past week, I've spoken with many parents who have expressed their total frustration with their child's school and IEP team.  This isn't to say that there aren't success stories where things are going well.  But far too often, this is hardly the case.  They've asked for things and have been refused.  They've begged for things and have been told it's not an educational need.  They've spent thousands of dollars on private evaluations and therapies which often yield critical information and results that their child's school team has either failed or refused to address.  Any wonder why so many parents are fed-up and worn from the fight?

No is not the end of things when it involves a child in special education.  And while each situation, child, and team is unique, there are a few things that parents need to keep in mind.

  1. If you're told "no" after going into your child's IEP meeting to beg for something because your "heart of hearts" knows it's needed, forget it.   You need to go in with hard data to support the need.
  2. If you're told "no" or encounter resistance to something you've requested, put the request and facts in writing and ensure that there is an action step (e.g. please respond back to us in writing) and deadline (e.g. by April 10th).
  3. If you're told "no" and have been clearly refused, request Prior Written Notice which requires that the school delineate their reasons - in writing - for the refusal.

If you're able (financially and otherwise) to secure private services for something your school district has said no to providing, make certain that your private clinician or provider is capturing data to demonstrate that your child is making progress.  School is all about progress and if your child has failed to make progress prior to the start of a service or support that you're accessing privately (and which the district refused) and then begins to make progress afterward, you need all possible documentation to present to the district.

Bottom-line is this:  Schools will often say no - sometimes using reasons that leave parents shaking their heads in disbelief and then their fists in anger, but that's not the end of the story.  Advocating for your child in school is not for the faint of heart nor is it a short-term process.  Rather, it requires parents to keep "upping the ante" by understanding that "no" is often the first response but may not be the last.

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.