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.

 

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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 Roller Coaster Ride That Never Ends…

How many parents haven’t agreed to ride the roller coaster at least once with their kids?  It’s almost a “right of passage” – sitting for 3 minutes on a ride that you can’t wait to end.  Yet riding the roller coaster at an amusement park doesn’t come close to the other roller coaster ride – the one that parents can’t get off because it simply doesn’t end.

I can count on two hands the number of days school has been in session yet would need my hands and toes plus those of others to count some of what I’ve already been told…

  • My child’s teacher refuses to allow my son to have a midday snack even though it’s on his IEP and has been documented by medical need.
  • We explained that my daughter needs extra time to transition from class to class and it’s in her IEP, yet we’ve already received a note saying that she’s been late for class several times.
  • Even though my child’s IEP states that homework will be limited to 30 minutes per night, we’re already spending double that amount of time and behaviors are starting.

Yes..it’s the start of a new school year.  New backpacks.  New classmates.  And a host of new issues that often combine with those carried over from last year.  If your child is in special education, you know well that this ride is anything but short and you won’t be on solid ground for a while.

Added to the challenges that inherently accompany having a child with autism, ADD/ADHD, or a learning disability comes slashed budgets, larger class sizes particularly if your child is in a regular education classroom, and fewer resources.  Districts are stretched thin and so are teachers.  Yet the reality is that it’s the parents who are feeling the strain and the children are already showing it.

Every school year begins with the hope that it will be a good one.  That services will be provided, supports will be in place, compliance with IEPs will occur, and collaboration will be the approach.  And for many parents, this is indeed how this and every school year begins.  Yet for many others, it’s anything but.

A few things to ease the mounting pressure:

  • If your child is already showing signs that things are not working, reconvene your IEP team now.  It should be routine that, depending upon how your child is doing “out of the gate,” you convene in September or early October.  Remember that you can call an IEP meeting at any time so don’t wait.
  • If your child made progress or regressed over the summer, bring this information and data to your IEP team meeting.  It’s essential that everyone involved in teaching and supporting your child knows what has happened from June through September.
  • If your child has been evaluated or re-evaluated over the summer and you agree with the findings, provide a copy of this report to your district before heading into an IEP meeting.  You want to give them sufficient time to review the documentation so that you’re all on the “same page” during your discussions.

And the most important piece of guidance is this – your child is continually changing and as such, your child’s IEP may need to change as well.  If you developed this year’s IEP last year, think about the weeks and months that have passed in the meantime.  Things that may have appeared appropriate in March may well be different in September.

If you have not been keeping notes at home, do so.  Your observations and data factor into your child’s educational plan so be sure you’re watching, listening, and recording things as the school year unfolds.  Document all conversations with school district staff – no “off the cuff” discussions apply.

Your child’s greatest resource is you.  Pace yourself.  Be proactive.  Focus on collaboration.  And don’t be afraid to ask the tough questions or to bring in outside support if needed.   I read a great business quote that certainly applies here too — “What you want, you will get.  But you have to want it enough to go about getting it.”

Required, Desired…Enough With Semantics. It’s Needed

I know…school’s out so who wants to think about it right now.  But here’s the thing – there’s a situation impacting millions of children and their ability to succeed in school.  And the implications go beyond high school graduation.  Many parents understand it, yet many are struggling to get beyond it.

Decisions are being made by schools every day about whether a child should receive “x” service or support that they clearly need based upon whether someone believes it’s “required” or “desired.”   And I’m not talking here about what special education laws or IEPs dictate.

Let’s take tutoring over the summer, for example, when a child is struggling with reading.  Many schools (but not all) would say that it’s required because they’re accountable, particularly if the child has an IEP, for helping the child read at grade level.  So many schools provide this support.  Now let’s look at social issues – e.g. the ability to have a conversation with a peer or the ability to interpret non-verbal cues.  Many would say that this is less of a necessity (i.e. it’s not required) so no need to address it over the summer…or even during the school year.

Not a week goes by when a parent doesn’t ask me this question – “Can we put social skills on our child’s IEP?”   Somehow the message that academics are the only thing that matters remains pervasive even though anyone would say that living in a social world requires social skills and understanding.  It seems as though being able to read a college syllabus (certainly important) trumps being able to work on a team.  Since when?

We tend to categorize things in order to prioritize them – the basics before the flourishes.  The problem here is that the scale of priorities is painfully out of whack.  Schools are making decisions about what they believe are the “must have” vs.  “nice to have” skills with little grasp of the long-term ramifications of *not* developing skills that they see as less than critical.

Ranking academics above other skills using a “required or desired” model is failing students miserably, as it ignores the needs of many children in their quest for success in school and beyond.  And when a parent asks if social skills can be included on their child’s IEP, it conveys plenty about the information they lack or the misinformation they’re receiving.

I doubt that anyone would want a child to be unable to meet tomorrow’s expectations in college or on the job because those who weren’t looking or thinking ahead decided what was required.  Parents know, yet they are often ignored when these critical decisions are made.

Many struggling children grow into struggling adults.  And if the purpose of school is to prepare children for adulthood, we’re failing them in this regard.  Forget the semantics.  If we want our struggling children to be ready to transition out of high school and into the “real world,”  it’s time to see their needs today and plan for tomorrow.

And It Gets Harder As *They* Get Older

I’m a major Crosby, Stills, Nash & Young fan and their song “See The Changes” tops my list of favorites.  So I hope they won’t mind that I’ve changed the word “we” to “they” because I’m talking about children.  It does get harder as they get older…much harder.

Ask any parent and they’ll tell you in vivid detail the age and stage that was the hardest for and with their child.   Every parent knows well when the bags under their eyes deepened because of lack of sleep, worry, or worse.  And for parents of children with Asperger’s Syndrome, the stage can be ongoing.

During the preschool and elementary years, bullying and exclusion can often be the norm and because this is when a child develops his or her sense of self as it relates to peers, the impact can be indelible.  Move into middle school and the social learning that may have occurred earlier now seems to have little relevance because talking about frogs and admiring each other’s shiny lunchboxes has shifted to Facebook and exposure to things that were never in our purview when we were kids.

High school arrives and so does dating, texting, sexting, driving, and a host of other social pressures driven by social media and often crippling adolescents with Asperger’s … or leaving them in a state of constant struggle, trying to figure out what’s happening around them and what they’re supposed to do about it.  These school years alone and the issues that emerge are enough to weaken even the strongest parent, but it doesn’t end with high school graduation.  No…the real challenges emerge when college and life hit – often like a mack truck.

Parents of younger children with Asperger’s work hard to build a foundation of social understanding in preparation for the teen years.  Parents of teens say that their worry (and hope) is that they have solid footing in social thinking to be their compass for what comes next.  Yet for many, this simply doesn’t happen because the freedom that accompanies English 101 and on-campus parties results in difficulties beyond what many parents anticipate.  And when this happens, all bets are off.

Parents typically relish when their children start college because they believe – rightly or wrongly so – that their job is basically done.  Not true for parents who know that, despite the fact that their child may be 18 and have a 4.0 GPA, they simply aren’t prepared for the demands of young adulthood.  And hearing college administrators tout at parent orientation, “Your child is now considered an adult” just doesn’t apply…at least not concerning their child.  The word “vulnerable” describes it best.  And with it comes a host of issues that have real world consequences for which an explanation of Asperger’s Syndrome holds little weight.  Worry intensifies…and with good reason.

Just as life gets harder as *we* get older, it also gets harder as *they* get older.  Watching a toddler stumble is expected.  Watching a college-age child do so is something entirely different.   The world suddenly expects more from them.  They expect more from themselves.  And parents hold their breath because getting older is only part of it…

Trust Me…It’s A Crisis

I’ve always struggled with numbers but not this one…

From the CDC comes this statistic – 1 in 50 children under the age of 17 holds an autism diagnosis.  Even for me, someone who has worked with parents of children with autism for years and suspected for quite some time that even the most recent statistic of 1 in 88 children was low, seeing this in print was simply startling.

Ask anyone whose life has been touched by autism and they’ll tell you that it changes everything.  It strains marriages and finances.  Overwhelms resources and time.  Shifts priorities and plans.  Every day, in every possible way, autism overtakes life and the expression …”let me count the ways” doesn’t even scratch the surface in terms of the impact an autism spectrum disorder has on parents, families and well beyond.  Trust me, I know.

At a time when school budgets are being slashed and families are truly hurting by an aching economy, these numbers equate to a huge wake-up call for those who may have been napping.  The need for early intervention services is critical as the earlier supports and services are secured, the greater likelihood that the child can make and sustain progress.  The need for broader and more complex supports for teens has never been greater with social deficits and bullying defining a huge part of life for high school students.  And the need for college-level support is enormous, as the expectations and freedom that accompany the foray into young adult independence brings with it enormous risks.  Trust me, I know.

Working parents have the greatest challenges and if both parents are employed full-time outside of the home or if it’s a single parent household, all bets are off.  Therapies, evaluations, research, school meetings, crisis situations…the strain on working parents and their time, finances, and health are beyond what employers and colleagues understand or even recognize. And as I say ad nauseum…behind every child with an autism spectrum disorder is a parent (or two parents) of a child with an autism spectrum disorder.  Trust me, I know.

Autism is complex and multi-faceted, leaving even the most “on” parents buckling under the strain.   Parents find themselves leaving jobs because any hope of work/life balance is greatly compromised if not impossible.  Parents find themselves on Google at 3 a.m. or spending weekends sifting through books and journals.  Parents find themselves remortgaging their homes, borrowing from family members, and altering their way of life beyond what those on the outside could fathom.   Trust me, I know.

Autism is a crisis.  Plain and simple.  It was a crisis five years ago and is even moreso today.  And while many are researching causes and developing new therapies, the reality is that exploding numbers of children and teens are struggling on this very day from wake-up in the morning to sleep (if sleep even happens) at night, in 2nd Grade and 11th Grade, in public schools and private schools.  And standing behind and beside each of these children is a worn, overwhelmed, frustrated, and confused parent – or two parents – trying in herculean ways to find answers and make things better.  Trust me, I know.

When a crisis hits, people mobilize.  Only in this case, it isn’t a natural disaster but rather a national crisis impacting not only families in their own homes, but employers as well.  Employers must offer assistance, whether through flexible work options, funds allocated for an employee to use for therapies, private school, or legal counsel, or employee resource groups so working parents can share information and offer support.  Because even with internet research in the middle of the night, what working parent with an 8 or 14-year-old with Asperger’s Syndrome has the time or energy to shoulder more than they already are?  Employers also need to recognize that today’s children with an autism spectrum disorder will likely be tomorrow’s employees programming their computer system or writing their corporate manual.  And in terms of society, everyone needs to begin to understand autism differently, for many pre-conceived notions from years ago are as outdated as go-go boots and wall telephones.

One in 50 children has autism.  It impacts everyone and is a genuine crisis.  Trust me, I know.