School Starts…And So Does Special Education

Riding a roller coaster with your child can be exhilarating, yet living on one from September through June is another thing entirely.  The truth is, this is life for many parents of children with special education needs, and working parents often have the added pressures of work/life conflicts.  

For some children, the start of a new school year can be terrific while for others, it’s a nightmare from day one.  No doubt about it…parental preparation is key.  

Often times, even with an IEP or 504 in place, issues emerge quickly with parents hearing things like this:

  • My child's teacher refuses to allow my son to chew special items we provided from home to help him focus.
     
  • We clearly explained at our spring IEP meeting that our daughter needs extra time to transition from class to class, yet we’ve received a note saying that she’s been late for class several times.
     
  • Even though we agreed that homework will be limited to 30 minutes per night, we’re already spending triple that amount of time and behaviors are starting.

Sound familiar?  

Here are three strategies to help:

  1. If your child shows signs early in September that things are not working, reconvene your IEP team.  You should convene in September or early October anyway as your child has certainly changed over the summer and issues agreed upon in April may no longer apply. 
     
  2. Speaking of summer, if your child made progress or regressed during this time, 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.
     
  3. If your child has been privately evaluated or re-evaluated over the summer and you understand and agree with the report, provide a copy 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 advice is this – remember that your child is continually changing and as such, your child's IEP may need to change as well.  It is a “living document” that must be reviewed and revised to reflect how your child is developing.

Your child's key advocate is you, so remember the 3 P’s:  Be prepared.  Be proactive.  And pace yourself.   This great business quote certainly applies -- "What you want, you will get.  But you have to want it enough to go about getting it."

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.

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."

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.

No Means No...Or Does It?

We all know that "no means no" and we play by that rule.  But, is there ever a need or reason to push back against the answer no?  In one critical area, yes. Ask any parent of a child in special education and they'll tell you just how many times they've heard the word no - or countless variations of the same - to requests, suggestions, and even demands made for something their child needs in school.  It could be an extra speech therapy session to work on social language skills or an aide to enable a bright child with Asperger's Syndrome to be fully included in school.  Maybe it's an alternative environment for lunch or a sensory integration evaluation.  No matter the "ask," the answer is often no.  But the story doesn't end here.

Over the past week, I've spoken with many parents who have expressed their total frustration with their child's school and IEP team.  This isn't to say that there aren't success stories where things are going well.  But far too often, this is hardly the case.  They've asked for things and have been refused.  They've begged for things and have been told it's not an educational need.  They've spent thousands of dollars on private evaluations and therapies which often yield critical information and results that their child's school team has either failed or refused to address.  Any wonder why so many parents are fed-up and worn from the fight?

No is not the end of things when it involves a child in special education.  And while each situation, child, and team is unique, there are a few things that parents need to keep in mind.

  1. If you're told "no" after going into your child's IEP meeting to beg for something because your "heart of hearts" knows it's needed, forget it.   You need to go in with hard data to support the need.
  2. If you're told "no" or encounter resistance to something you've requested, put the request and facts in writing and ensure that there is an action step (e.g. please respond back to us in writing) and deadline (e.g. by April 10th).
  3. If you're told "no" and have been clearly refused, request Prior Written Notice which requires that the school delineate their reasons - in writing - for the refusal.

If you're able (financially and otherwise) to secure private services for something your school district has said no to providing, make certain that your private clinician or provider is capturing data to demonstrate that your child is making progress.  School is all about progress and if your child has failed to make progress prior to the start of a service or support that you're accessing privately (and which the district refused) and then begins to make progress afterward, you need all possible documentation to present to the district.

Bottom-line is this:  Schools will often say no - sometimes using reasons that leave parents shaking their heads in disbelief and then their fists in anger, but that's not the end of the story.  Advocating for your child in school is not for the faint of heart nor is it a short-term process.  Rather, it requires parents to keep "upping the ante" by understanding that "no" is often the first response but may not be the last.

A Price Tag On Our Children...?

This is a rant.  Maybe a vent.  Not sure the difference but here it is anyway. A colleague contacted me today asking whether I knew of someone who could help support a middle school child with autism.  The person was needed at school from arrival until the end of the day including lunch, recess, specials...you get the picture.  These positions are generally advertised on school district websites or placed on Craigslist, but this individual was looking to me for a person with experience and training in this arena.  When I asked what the position was paying, I'd like to say I was shocked but I wasn't.  I just shook my head in disbelief (as I've done many times before) at the continued lack of understanding about the importance of this role.  Not to mention the pathetic compensation.

An aide for a child with special needs is like a limb.  The child can maneuver without it but not nearly as well.  And surely not well enough to compensate for whatever deficits exist.  So like a limb, it's essential to understand how it works, its purpose...and its worth.  Hard to imagine putting a price tag on an arm but when it comes to an aide in school, that's exactly what's happening.  And the current price tag isn't even close to hitting the bar.

I know all too well about school districts cutting budgets and services, that music and art departments have been eliminated, and that many school-based activities no longer exist.  I also know that educating - and this is more than academics - children requiring special supports in school is not an option but a requirement.  This means aides for many children and the role these individuals play have been undervalued for far too long.

Paying an aide $7.50, $9.00, or $11.25 per hour to teach, reteach, coach, mentor, monitor, guide, support, supervise, advocate, run interference, capture data, collaborate with teachers, and communicate with parents is insanity.  Pet walkers are paid $15-$25/hour (and as I've said before, I have nothing against pets).  I could list any number of roles or positions paid more than aides.  But here we're talking about a person who often remains closest to a child who is struggling in school and needs the best (yes, I know ... "appropriate") supports possible, and are asking them to undertake herculean tasks for pennies.

For many children and teens with autism, learning disabilities, or behavioral challenges, their success - no, their ability to make it from 8 a.m. to 3 p.m. - is often dependent upon the support and expertise of a single person who is expected to work wonders while wondering about their worth.  As I've said about many things regarding the needs of children struggling in school, "it's not a nicety, but a necessity."  And this certainly applies to aides.  It's not all about the money - many become aides to make a difference in the life of children, but when we're talking about an adjunct to a child, we can and must do far better.  The success of our children in school and beyond depends upon it.