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.

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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.

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.

Parents, Children, Autism, and Unconditional Love

Let me start by saying that I’m not a psychologist, sociologist, or expert on love.  I am, however, a parent and as such, have filled these roles and many more in the two decades since I went from being “me” to “we.”

Andrew Solomon’s recently posted TED talk – “Love, no matter what” on parenting, children, differences, and unconditional love struck a number of chords.  How we need to embrace our children and their differences and how unconditional love means doing just this.  He spoke of the changes we as a society have undergone in terms of understanding and accepting our gay children, our children with Down’s Syndrome, and our children with other differences and disabilities.  And while I agreed with much of his talk, there were two points of fairly strong disagreement, one of which follows.

Solomon stated that parents of children with autism who wish that their children did not have this diagnosis somehow fail the litmus test of unconditional love.  What?  Parents of autistic children don’t love their children unconditionally?  Say it wasn’t what he said.  But it was.

On my soapbox I climb once again to say… No parents understand the definition of unconditional love like parents of children with autism.

I don’t need to revisit again what I’ve expressed so many times before…the hours, sacrifices, work/life conflicts, financial strain, family upheaval…all the things that define parenting children, teens, and young adults in a world where they struggle at best to meet its demands.  But I do need to ensure that anyone who may not understand why parents would “wish” their children did not have this diagnosis, understands it now.

Parents of autistic children see their children’s struggles every day in ways that clinicians, teachers, and others cannot.  They see them from sunrise to sunset.  They know that the weather, clothing, food, sounds, movement, people, activities, environments, and a host of other day-to-day situations create chaos for their children.  Does anyone think these parents may “wish” this wasn’t the case for their children?  Does anyone think these parents may “wish” their children had friends?  Could speak?  Could drive?  Live independently?  Work?

If parents of children with autism wish anything, it’s that their children did not have these struggles or needs.  They wish for anything – something – to lessen their children’s pain.  But the wishing has nothing whatsoever to do with love.  And certainly not unconditional love.  Parents of children with autism *define* unconditional love and epitomize what this truly means.  They could also teach a lesson or two to many other parents as well.

We all wish for things.   For life to be easier.  For money to be more.  For family to be well.  And yes, parents of children with autism do wish for things too.  That their 4th Grader would be invited to a classmate’s birthday party.  That their 8th Grader would be asked to be in the science club.  That their 12th Grader would be able to attend college.  But the one wish they don’t have is wishing that their children were different so their love for them would then be without restrictions or caveats.

It’s this type of unconditional love that keeps parents of children with autism forging ahead, plowing through the difficulties, never taking “no” for an answer, exploring supports wide and far.  If wishing comes into play here at all, it’s that these parents wish that their children may have every opportunity to live a life where *their* wishes can come true.  And their shot at doing so rests firmly on the shoulders of their parents who love them unconditionally.

Questions Are The Way To Answers

Why are people so afraid to ask questions?  Is it because they don’t know the questions to ask, don’t want to hear the answers, or are reluctant to question people with expertise they may not have?

This isn’t being posed as something simply to consider, but is being directed to one particular group of people — working parents.  Not just any working parents, but those who have children who are struggling in some way and are receiving any type of services to support their needs.  While many working parents are truly desperate for knowledge, many are reluctant to open the door to access answers.  But before you say, “Hey…I ask plenty of questions,” allow me to elaborate.

With the new school year well underway, parents are already up to their necks in challenges particularly if they have a child with, for example, autism or a learning disability.  They are struggling to figure out what to do (i.e. what interventions or therapies are appropriate), who should do it (i.e. should they push for these services in school or secure them privately), and how to balance these ongoing needs with their other responsibilities (e.g. their workplace job and managing their families).  It’s a boatload of pressure any way you slice it.

But here’s where the “questions” issue comes to a head.  Parents are reluctant to ask the psychologist who just completed their child’s testing to explain the results in “lay language” that the parents can understand.  They are reluctant to ask the tutor to show them exactly what skills are being addressed, to ask their child’s teacher for data to support progress, and to ask the school district staff sitting around the table at their child’s IEP meeting to repeat things that are unclear or are not making sense.  Questions are not asked when answers are needed most.  Often times, it’s because parents see these people as “the experts,” therefore it would be — fill-in-the-blank — wrong, disrespectful, insulting, etc. to question them.  But isn’t this precisely how we learn?  By questioning people who may have insights we do not?  Yet what’s truly puzzling is this — if you take a similar scenario into the business arena, questions abound and the hesitation to ask is minimal.

I’d like to suggest that working parents take a new approach to their children and begin to view things like business.  In other words, ask yourself whether you’re getting a return on your investment.  The goal is to determine whether your time (often hours away from the office or reducing your work schedule) and resources (often tapping into savings or borrowing from family) are yielding positive results.  How do you know?  Questions and answers.

Working parents are mired in a “life mural” that requires unmatched work/life balance strategies.  This is particularly true when there is a child with special needs in their lives. So many parents find themselves overwhelmed yet fail to utilize the same strategies that they use in their jobs to manage their child’s needs.  Asking questions (even of “the experts”) and getting answers.  This approach yields powerful results … and isn’t this exactly what you’re looking for?