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.

 

The Strain Of Parenting A Child With Special Needs

It may seem pretty obvious that parenting a child with special needs requires more – more time, more patience…just more.  And you’d be right – it does.  Yet as is the case with many children and teens whose special needs are hidden, so too are the realities facing parents when this exceptional caregiving becomes front and center.  Hidden from the outside world perhaps, but not from their own view.

Late last night, I spent time speaking with a parent who shared with me that their marriage was ending.  Weeks, months, and years of focus on their child tore the fabric of their marriage beyond possible repair.  The attention their child needed was unrelenting and their attempts to achieve any sense of normalcy (a word I dislike) was intensified by extended family and friends not “getting it.”  Battling for their child became battling for themselves as well.

While I’d like to say this story is rare, it’s not.  Time and time again I’ve heard from parents who thought their partnership was strong – and indeed it likely was before a child whose needs overtook all else became the central role in their lives.  They may have seen the cracks starting to develop but refused – for good reason – to believe that they couldn’t withstand the strain.  Yet when faced with the harsh realities, even the strongest husband and wife can sometimes no longer cope…with their denial, remorse, fear, guilt, uncertainty, feelings of helplessness, lost dreams, and even those thoughts that they dare never say.  Why me and why us.

Financial pressures to pay for services and supports their child needs – often hundreds and thousands of dollars a month.  The inability to have “time alone” – securing a babysitter or caregiver who understands autism is impossible.  Few if any day trips or extended vacations with friends or family – if they do happen, it’s not without much planning, tension, and often times issues.  Family life becomes difficult – from therapists in the home to the child’s behavioral issues from morning to night.  Changes in careers – one parent can no longer work outside of the home because of the child’s needs yet the bills continue to mount.   Work/life stressors – a work deadline conflicts with an urgent call from school.  Communications issues – who has time to talk anymore.  Lack of intimacy – too tired.  Shifting priorities.  Plans ended.  The partnership crumbles, sometimes beyond fixing.  No surprise to the millions of parents struggling to hold everything together.

I’ve said it before and will say it again … parenting a child with special needs is herculean parenting.  It stresses and strains every area of life and the impact is often far-reaching and beyond the view of many.  Yet the toll is very real and intensifies when a marriage ends.  And because very often one of the parents becomes the warrior solely focused on the child (because they *have* to be), they often lose themselves in the process.  And by losing themselves, the “us” is often lost as well.  Not by design, but rather by situation.

So my message, while it may be only words, is this – the role every parent of a child with special needs plays is beyond description and definition.  It’s parent/coach/guide/role model/teacher/protector/therapist/case manager/facilitator/advocate/strategist…and a host of other titles all in one.  Your efforts, sacrifices, and yes, pain is for one reason – to help your child achieve success and independence.  And while there may be painful losses in the process, don’t lose sight of all you have done and are continuing to do to help your child move ahead.  For while your struggles may be hidden, your rewards most certainly are not.

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.