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.

 

The Lazy, Hazy, Crazy Days…Wrong

Ah, the start of summer.  Time to kick back, relax, and vacation.  Slow down and open the windows after months when everything and everyone was insulated.   But wait…what voices do I hear?  Is it coming from my head or the mouths of others?  Took me a nanosecond to realize it’s others saying, “Not so fast about the leisure days of summer.”

School is not quite over yet the planning — and worrying — about how to play  “the kids are home but I have to be at work” game has long been underway.   Sure, there are camps and playdates (although no middle or high school kids would *ever* have these) that can be and have been scheduled, but many working parents have far more to focus on than making sure there’s extra sunscreen in Jason’s backpack or confirming that Annie’s friend’s mother can pick her up from camp.

HR may not be aware of it, but there is a huge number of working parents facing extra distractions and less productivity during these summer months even if casual dress extends until September.   And the reality of these pressures, while parents cognitively know them, hasn’t even “hit the fan” yet since there are still a few days of school remaining.  It’s like watching the sun set…you know it’s happening yet you are savoring every last minute of light.

A manager in your organization or the administrative assistant to a C-suite executive has a child with autism who has been receiving services and therapies in school.  Some every day.  Some for 7+ hours per day.  This working parent has had nine months of school meetings, calls from the principal or teacher, and therapies to juggle and now, along with everything else, their child *may* receive 6 weeks of services, from 8:30 – noon.  That’s late June through early August.  What about the day after school ends?  What about August through September?  What happens after 12:00 noon each day during the 6-week program?  Sure, there’s Grandmom or the neighbor but at what cost (and I don’t mean financially)?  It’s a moving target … you think you have things in your sight when suddenly the target turns, or speeds up, or disappears entirely.  It’s unpredictable and makes “livin’ on the edge” more than the title of an Aerosmith song.

Some companies allow for summer flexibility — perhaps slightly shorter days or working from home on Fridays.  Others provide for back-up child care.  All great solutions to some problems.  Yet for others, it’s not enough and not what’s needed.  For working parents of children and teens with autism spectrum disorders, the needs intensify over the summer — hard to believe since the school year itself is fraught with chronic and crisis issues and needs.   Trying to piece together a three-month schedule that often includes private programs, extended school year services, tutoring, in-home services, and therapies — each costing $$$ and requiring parental support and time, is nothing short of another full-time job.   Plus, IEP meetings still happen over the summer, progress monitoring still requires parental supervision, and transition planning for September — whether to another grade or school — should be well underway and needs to continue through the summer.

Employers can help make the summer for these employees more manageable with work-life supports.  Offer schedule flexibility if you do not do so already.  Provide financial assistance to offset the cost of specialty summer programs and therapies.  Offer a vacation bank so employees who do not use all their vacation time and wish to donate it to a co-worker can do so.  Extend the option of telecommuting half-days.  Establish an on-site resource room for working parents to privately handle telephone calls from clinicians and therapists.  Provide on-site summer workshops and special education clinics to help employees prepare for the next school year.  There are cost-effective solutions that can offer much-needed (and valued) support.

It’s hard being a working parent from now through early fall.  It’s even harder when the child or teen needs more than swimming lessons or an art camp.  Summer is when the need for assistance, flexibility, and support is high.  Employers play an instrumental role in supporting working parents and by recognizing the intensified needs during the summer months, these exceptional parents may well be able to take that vacation.  Or, at  the very least, kick back just a bit to regroup and prepare for September.