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.

 

Autism, ADD, and The Holidays...When Ho-Ho-Ho Turns to No-No-No

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

For parents of children with autism spectrum disorders, ADD/ADHD, sensory, or other special needs, the holidays can be nothing short of a nightmare.  One that continues for more than a sleepless night.  Knowing your child's abilities, limitations, and preferences and adapting accordingly can make this time of year far more bearable, for everyone involved...

Visiting.  If family and friends are coming to your home, make sure your child knows when (day and time...and use a countdown timer as well if that helps) and that he/she can go off by themselves (with mindful supervision) whenever they wish.  Insisting that they greet people at the door or that they sit with everyone to "catch-up" could be a meltdown or escape moment waiting to happen.

If you’re heading to the homes of others, do everything possible to ensure a short visit (brief is better)…that as few “new” faces are there as possible (try to visit during an "off" time)…and that a quiet place is shown and available to your child upon arrival.  And, if your family or friends are unaware of your child’s diagnosis, sharing this information may be the greatest gift you can give...to yourself, your child, and to them.

Peers.  Seeing the cousins in a group or having the neighbors visiting in one evening may create major social issues, even if your child or teen may otherwise have a positive experience when it's 1:1 or a small group.  Give your child every opportunity for social success by limiting who comes when, making sure your child knows the plan. and changing things if it appears as though the timing might not be right.

Food glorious food.  Be aware of what’s being served on those platters and in those bowls.  If your child is on a gluten-free or other restrictive diet, bring the foods that you child can eat and in the typical dishes or bowls, particularly if your child is younger.  Now is not the time to introduce new foods and fancy ways to serve them.

Attire.  That brand new dress or shirt or those fancy socks could cause sensory issues that ruin a holiday moment before it begins.  Allow your child to dress as they prefer or introduce the "new attire" well before the official wearing, asking them if they want to “dress it up” a bit.

Music.  If music is soothing or if Jingle Bells happens to be a favorite, play music as much as possible during the holidays.  If attending holiday religious services is planned and if it's a new experience, a brief introduction is better than expecting your child to sit through two hours of services.  Crowds, tight seating, sounds, smells ... each alone may trigger sensory and auditory overload, so anticipate.  Arrive early to allow your child to see the environment.  Sit in the back.  Bring a snack.  And leave when it’s clear that enough is enough.

Chanukah, Kwanzaa, and the Christmas tree.  Lighting the Chanukah candles and the Kwanzaa feast can be a wonderful gatherings for family, but your child or teen may find these activities difficult.  And keep in mind that the blinking lights and singing ornaments on the Christmas tree (or Chanukah bush) can also create problems and may trigger sensory overload.

Shopping.   The mall with its crowds and loud noises are a recipe for a meltdown or resistance to even going.  If the picture with Santa is important, find a garden shop, bookstore, or other smaller venue where Santa pictures are being taken.  And if your child feels about Santa as many do about clowns (i.e. forget it), use photoshop to put them in the picture.

Schedules and routines.  The holidays mean changes which can result in havoc for children and teens alike.  This is also a time where therapies are on hiatus, creating even more need for structure and predictability.  Prepare a visual schedule – with your child’s assistance if possible – to show the plans for the days and nights.  And try to continue with some aspects of your child's therapies at home (another reason why ongoing communication with providers is essential).  Preparation is key.

Flexibility.  More important during the holidays than at any other time.  Bedtimes can be pushed.  Snacks can be expanded (unless there are dietary issues).  Time spent on video games can be extended.  Sleeping in their clothes is just fine.  The key is monitoring your child and making adjustments accordingly.  And listen to their wishes as these can be more important than anything in a box.

Gifts.  If the expectations on Christmas morning exceed the pleasure, forgo it.  Some children and teens find the pressure of opening gifts and then having to appear overjoyed more than they can handle.  In fact, many prefer to open their gifts alone.  Christmas Eve or Christmas evening after dinner work just fine too.  And ask family and friends what's in those nicely-wrapped packages as gifts with sounds or requiring two hours of assembly can be meltdown-provoking.  Same with your gifts.

The most important part of the holiday season is showing your child - based upon their personality, needs, expectations, and limitations - that the holidays can be fun and that you're listening to and watching for their cues.  This will make things far more enjoyable for everyone and will bring you a little "ho, ho, ho" in the process.  Happy Holidays...

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.

A Discussion Whose Time Has Come

I love pets.  Dogs, cats...wonderful creatures.  They share our homes and make us laugh in YouTube videos.   They're special members of our families.  I used to have pets so I get it.  Truly.  And I know that comparing a Collie or short-hair to anything else is probably unfair.  But life isn't always fair. In the world of work/life where companies are striving for employees be happy and productive, many are offering "pet insurance" to ease the financial pressures pet owners face.  The thinking is that employees will worry less about the vet bill and more about the looming client deadline.  I'm in favor of anything that helps an employee balance -- or better juggle -- their often competing life responsibilities.  Which brings me to the comparison.

I just read an article where the focus was parents talking to parents about what to expect when their child is diagnosed with autism.  Nothing new, as I've spent 14 years *listening* in corporations, online forums, parent support groups, and a host of other places where parents come together to share the "real scoop" on life pre and post an autism diagnosis.  I've heard most of it and with every story heard, I find myself shaking my head both in disbelief and admiration.

In this recent article, one parent said: "Be prepared to go into debt, borrow from family, increase your mortgage, take out a line of credit to pay for interventions...".   Go into debt.  Borrow from family.  Take out a line of credit. Can you imagine being a parent who needs to take out a loan to get your child what he or she needs?  Sitting down with your parents to ask them for money so their grandchild can learn to speak ... or make a friend?  Trying to decide whether you can keep working to pay off that loan or repay your parents (not to mention pay for all the *other* needs) when the time you'll need to orchestrate your child's daily and weekly schedule will take far more than two weeks paid vacation or short-term family leave?

Which brings me back to pets.   I realize this may not be popular with the "pet set," but if -- as a former HR Director with a choice to make -- I had to choose between supporting the needs of employees with children or pets, children win.  Hands-down.  Before the barbs are tossed, it's important to say that in an ideal world, every employee's needs would be supported so that everyone would be fully productive and engaged.  But this isn't the ideal world and choices are part of the equation.  Companies grapple with decisions about where to put their limited benefits dollars and how many choices to offer employees when benefits options are included.  But -- and my shield is poised -- there's a huge difference between helping an employee pay for a flea treatment vs. helping an employee raise a child.

Children who will attend college, work in companies, pay taxes.  Children who will make contributions to science, technology, performing arts.  Who will move from dependent children to independent adults poised to purchase the products and services your company produces or provides.  No one would ever want less for a child.  And no one would ever dare limit a child by a diagnosis.  Yet the future for these children rests on their parents -- current working parents facing choices that defy description.

So it's baffling to me that smart, forward-thinking companies seem to place more importance on helping employees care for their pets than to raise their children.   Is it a lack of understanding or a reluctance to get involved?  Or is it a preconceived idea that children with autism will not reach the expectations that many consider to be "typical" of children moving into adulthood so why bother?  No, it can't be that.

A number of years ago, I worked with parents who sold their home and moved into a small, two-bedroom apartment turning their second bedroom into a therapy room for their child.  They also sold their second car and carried their "change of season" clothes packed into large plastic containers in the trunk of their car.  And just recently, I met parents who are in the throws of bankruptcy because they used every penny they had and maxed out their credit cards to support their child's needs.  Life-altering choices are being made by employees every day to help their children.

Companies play a pivotal role here.   The same subsidies offered to employees trying to adopt should be offered to employees to help offset the staggering costs of therapies or home-interventions.  Discounts on legal support should be extended to employees in need of a special education attorney to secure a private school for their child.  On-site health fairs should include experts in special needs and special education to enable employees to access supports and resources easily and more cost-effectively.  With health and stress-reduction being core areas of focus in the workplace, few things compare to the financial, family, work, and personal pressures on an employee raising a 6-year-old or 13-year-old with autism.

I have nothing against pets.  Really, no problems at all.  But a problem does exist when supporting tails that wag or fluffy balls that purr seem to take priority.  A disconnect exists -- companies are striving and competing to achieve "best company" status yet are overlooking the growing number of working parents desperately needing a lifeline.  Pets and children can live together beautifully both at home and in the workplace, however when a choice needs to be made, the child has to win every time.

Why Is It So Hard?

Over this long holiday week, questions have been marinating in my mind.  Not new questions, but questions that require us to consider and discuss things a bit differently.   Welcome to my July "brain dump"... Why is it so hard for people to understand that parenting a child with autism or ADHD is like parenting three typical children?

Why is it so hard for the people called "Mom and Dad" to be treated by the outside world (and sadly, sometimes their "inside world" too) with the respect they deserve when autism touches their family?

Why is it so hard for extended families to locate and access the supports they need when a grandchild, nephew, niece, or cousin has been diagnosed with autism?

Why is it so hard for parents of children with special needs to access the services and supports their children need in school (and yes, I know the actual reasons)?

Why is it so hard for children with autism or other differences to be accepted by their peers?

Why is it so hard for people to drop the assumption held by many that children with a "label" -- e.g. learning disability, Asperger's Syndrome -- will not reach high levels of achievement so the expectations for such are reduced or eliminated entirely?

Why is it so hard for companies/employers to make the correlation between the numbers of children diagnosed with autism (now estimated at 1 in 88) and the working parents in their workforce (i.e. the parents of these children) who are barely keeping their heads above water and need help...now?

Why is it so hard for working parents to utilize flexible work options when flexibility is the key to recruiting and retaining top performers *and* it's considered as important -- if not moreso -- than money?

Asking 8 questions on July 8th is a good start (for now).  The point is this...we can't be afraid to ask these and many other questions.  Plus, what do we teach our children?  That no question should be left unasked.  Asking a question is the first step to change.  Change in understanding, perspective, appreciation, or response.  All it takes is picking up that prism and turning it slightly to see things differently.  That's the purpose of the questions...

Peace, Love, and Autism

On one of last week's steamy evenings, there was a free concert in the park -- Jefferson Starship (the newer version of Jefferson Airplane) was performing and thought my son (a musician/composer himself) might find it cool.  So off we went with cold water bottles in hand. As the crowd began to gather, it was like a blast from the past -- men wearing tie-dyed shirts that you know they wore in 1968 ... women wearing flowy, flowery long dresses ... couples on blankets clearly reflecting back on days gone by.  It was more than a free concert -- it was a return to a time when the world was a different place.

No sooner had the concert started than I noticed a woman with her child -- there were many -- but this one grabbed my attention and kept it throughout.  Her child could not have been more than 4-years-old, wearing shorts and with a head of curly blonde hair.  But what made me laser-focus in on this child and his mother was the weighted vest he was also wearing.  On a 90 degree evening and over a little t-shirt, this child was donning a weighted vest.

As the concert continued, I periodically watched this mother following her child everywhere.  He would be aimlessly walking up to people and turning away, strolling along other blankets, and picking up leaves near the trees.   He was moving about in his own world, his weighted vest helping to make it possible for him to function.  He was autistic and nowhere did this child move without his mother within inches of him.  When I finally saw where their blanket was located, what I saw next completed the picture.

There was Dad with their other child, who was even younger, who remained seated throughout.   The exhaustion on this man's face was palpable.  He watched as his wife and their son walked from here to there, all the while trying -- just for a moment -- to savor the music sans distractions.  Mom might have been moving around the park, but Dad was right there too.  When the little boy came closer to our blanket, I looked at this child's mother and smiled, the kind of smile that only someone who understood could smile.  She smiled back...the kind of a smile that you knew meant a combination of  "thanks for understanding," "thanks for not judging," and "I need a break."

Having worked with so many parents of children with autism for years, it was easy -- albeit not simple -- to show her a momentary sign of understanding.  I could see the exhaustion in her eyes as well.  She walked with her shoulders hunched as if she could have used someone pulling a rope to keep her moving.  She said very little to her son yet her silence spoke volumes.  Both of these parents were out for the evening, hoping to enjoy some peace and love at a concert where these were the key messages.  And while perhaps they were able to capture some of the evening's flavor, autism remained ever-present and unrelenting.

Autism is 24/7/365.  It does not take a vacation nor can you put it aside.  It does not disappear regardless of whether you're a full-time, stay-at-home parent or a working (outside of the home) parent.  It follows you everywhere if you're not leading the way.

If you know someone with a child with autism, understand that it never leaves their side.  It's like an additional limb that they need to figure out how to use and how to make it work with the rest of their body.  It alters life in countless ways.  It brings even the strongest parents to their knees over and over again even if it appears as though they are walking.

If you -- whether a manager, colleague, family member, or friend -- look in their eyes and see that they need a little peace or love, just remember that autism is right beside them.  "Nothing's Gonna Stop Us Now" would be their mantra yet  "Count On Me" -- if only for a little while -- would be what they would ask from you if they could.

Hey Buddy...Have $1.4 Million To Spare?

I don't know about you, but few people who exist in my sphere have this kind of money.  Even those who have been working and saving for years come up way short.  So if someone told you that you needed $1.4 million dollars -- or access to it, what would you say?  And what if you had no option because this was the amount of money it would take to raise your autistic child over his or her lifetime?  Suddenly this number rings at a deafening pitch. Numbers, particularly those that few of us have ever had looking back at us from our check register, are hard to grasp but let's take a quick look anyway -- $1.4 million if the child does not have an intellectual disability; take it to $2.3 million if he or she does.  This is according to preliminary research released in March by AutismSpeaks, which added one other mind-numbing number -- that the annual costs of autism are -- wait for it -- $126 billion.   That's a big number.

But how about this?   Research released today takes these numbers and converts them into words ... words that many people may be able to more easily understand...and act upon.  The costs to parents who are raising a child with autism are *higher* than for parents raising a child with diabetes.   Diabetes.  One of the key health concerns facing children and adults today.  An issue grabbing the attention of doctors, dieticians, educators, and policy makers.  And a focus of most workplace health initiatives and health fairs.  Everyone wants to reduce the number of children and adults struggling with diabetes.  The volume is definitely growing louder and people are starting to take notice and mobilize.

Take notice.  Precisely what's needed in order for employers to recognize that while diabetes is a major issue, so too is autism.  The financial, family, and health toll it takes on working parents to raise a 5-year-old with autism or a 12-year-old with Asperger's Syndrome is enormous.  Even taking the workplace issues of productivity and absenteeism off the table for a minute, the amount of money, time, and resources needed to help their children with autism reach their capabilities brings working parents to bankruptcy.  Forces families to forgo vacations.  Makes second cars a non-option.  Requires more than the occasional holiday visit with grandparents.  And forces many to leave the workforce even with these out-of-orbit costs.

While today's news did not come as a shock, it did raise the need -- okay, my need -- to continue to increase the volume about the toll autism takes on working parents.   I was talking to someone earlier today about employers providing pet insurance to employees -- a great "perk" for sure.  Yet I said that providing supports to working parents who are raising children with autism is not a perk -- it's a necessity.  Isn't the work-life discussion one that revolves around bringing some sanity and balance to otherwise out-of-control life situations?

Few people today are not touched by autism in some way.   This translates into working parents -- many boomers also caring for aging parents -- feeling a level of pressure and responsibility unmatched by many.  The needs continue to emerge yet the resources and supports are difficult if not impossible to access.  Employers play a pivotal role in this equation and it starts by telling these employees, "We get it", just as they do in supporting a range of other issues also impacting their workforce.   But there's one difference.  Parenting a child with autism directly affects more than the employee alone...it affects the child and the family unit as well.  Talk about stress.

Next time you hear something about autism -- and the media is all over the issue -- stop for a minute and think, "So what would I do if someone told me it would take $1.4 million to raise my child into adulthood."  You'd be doing what millions of other parents are already doing -- struggling and hoping someone will listen and help.