Workshop For Dads – Autism and Special Education

Dads navigating through their children’s preschool through high school experiences have long been seen as the person who only attends an annual parent-teacher conference or appears at a school meeting when problems arise.  No longer.

Fathers are taking an active role in every phase of their children’s lives, and this is never more true than when their child has an autism spectrum diagnosis and is requiring special education services and supports in school.  The complexities of their children’s needs and the special education arena require dads to understand the basics and well beyond in order to truly be key players in the process.

“The Dad Dilemma: Your Child, Autism and Special Education” is a workshop for dads only being held in the Philadelphia area on June 26th and July 10th.  From understanding the language of special education to effective parent advocacy strategies, this interactive session will end the confusion that many dads feel and will replace it with information and actionable steps.  Dads should not have to struggle to “catch-up” to understand what’s happening with their children in school.

Information can be found at: http://www.education-navigation.com/fathersworkshop or by contacting us directly at 610-628-4456.

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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.

 

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.”

Independence…A Day Or A Life

July 4th…a day commemorating our independence.  Most of us never think about our independence because we typically just make our own choices and do as we please.  We take for granted that we can go here and there, do this and that … all at will.

But if you think about the definition of independence as it applies to children with autism and other diagnoses  – not relying on another or others for aid or support – the word suddenly takes on a whole new meaning.   And while independence is defined differently for every child, the process of working toward this goal remains the same.  It’s called hard work, never saying quit, and keeping your eyes firmly on the prize.

Not every child will reach the plateau of total independence (true for children without a diagnosis as well).  But, do you know how many children have been – and still are – thought to lack the ability to *be* independent at any level because of an obstacle and barrier (i.e. their diagnosis) that others believe precludes achieving this goal?  And do you know how many have proven these people wrong?

For many, independence is celebrated as a day with family barbeques and fireworks.  For many others, it’s a life goal that often starts in childhood, continuing through adolescence and right into young adulthood.  It’s what parents “in the trenches” are fighting for every day, refusing to relent to the labels or naysayers who seem to know what the future holds.  They don’t.

For the millions of children (and their parents) who are striving to achieve the milestone of independence, think of tomorrow as a celebration of you and everything you’re working so hard to achieve.  Nothing worth achieving comes without true effort and you continuously show the rest of the world what this is truly all about.

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.

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.

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.