Posted in School Daze

Having the Wisdom to Recognize (and Heed) Great Advice

This is Part 3 of a 3-part series on some best parenting practices that worked well for us!

Recently I’ve written about flexibility and being a passionate advocate as two of three best practices that transported us from the chaos of “then” to the relative calm of “now”.  The third key is recognizing & heeding great advice.  Today I’d like to share some of the best parenting advice I ever received in regards to raising Brian.

After Brian broke free from a line, made a dash for the main office (looking for me) and subsequently slapped the headmaster on the first day of third grade, he was expelled (an outburst spurred by severe sensory issues, we later discovered).  The headmaster, Mary T., made an inordinately helpful recommendation.  She suggested an evaluation by a neuropsychologist, specifically Dr. L.  The purpose of the evaluation would be to assess Brian’s intellectual, cognitive and emotional functioning.

At the time we met with him in September 2005, Brian was eight years, 9-months old. Brian was evaluated over three days, 9/16, 9/26 and 9/30.  Dr. L administered a battery of tests including the Wechsler Intelligence Scale for Children, the California Verbal Learning Test, the Woodcock-Johnson, a grooved pegboard test, visual-motor integration tests, Behavior Assessment System for children (parents rating), among many others, plus behavioral observations and a clinical interview.

Looking back on the family history makes me feel sad, and reading it, I flash back to the feelings of desperation and loneliness that were my constant companions.  Here’s an excerpt:

“His parents confirmed that Brian is having difficulty at home and at school.  The reported that Brian is increasingly resistant and oppositional at home, and his school performance continues to be erratic due to impulsivity and distractibility.  The reported that he is having difficulty with self-esteem and both believe that Brian tends to be overly sensitive, self-critical, easily upset or overwhelmed, and unable to handle constructive criticism.  In the past, he has voiced depressive, anxious and suicidal thoughts, but has never attempted suicide.  Moreover, he struggles in his relationships with his brother who has been diagnosed autistic.  Both parents report that Brian has few friends and has a hard time acquiring new friends.  His parents reported that his reactivity will push his friends away.”

This was a brutally tough time for everyone.  Evan had many needs in his own right, and Brian was increasingly out of control.  Brian’s psychiatrist, Dr. H., once explained that the process of figuring out the most efficacious balance of medications was “more art, than science”.  I appreciated her honesty while resenting that the process forced my child to play guinea pig before he could get better.  At the time of this evaluation with Dr. L., he was being treated with Geodon (not for bi-polar disorder but because of the severity of his non-verbal learning disabilities creating severe frustration with all aspects of life).  Past attempts to help my baby included Adderall, Trazadone, Abilify, Zoloft, Lexapro and Risperidone.  Doctors just couldn’t get a handle on a good course of treatment.  And I absolutely would rather have him “acting out” and impulsive than drooling and zombie-like (which happened with the Risperidone).  His quality of life was almost nil, and I was praying that Dr. L could offer some help.

The test results were comprehensive and revealing.  A few highlights:

*Struggled to maintain attention to task…exhibited poor frustration tolerance and constant movement…responded better to choices rather than being told when or how to perform a task (too true to this day!)

*Poor pencil grip…exhibited a fine hand tremor bilaterally…would trip over himself…significant difficulty walking heel to toe

*Speech impeded with difficulty pronouncing his R’s

*Full-scale IQ score of 119 (90% percentile) …Working Memory is an absolute strength in comparison to his other abilities

*Manual dexterity performance at the 2nd percentile relative to others his age…exhibited particular difficulties in fine motor control and coordination

*On the Woodcock Johnson:  Academic Skills – 99 percentile, Academic Fluency – 99 percentile…In all areas Brian scored in the Above Average to Superior range…he does not meet criteria for an academic learning disability

*Parents tended to be in total agreement regarding his difficulties…of particular importance was their consensus on very critical items such as Brian threatening to hurt others and saying “I want to kill myself.”  {Re-reading this and writing it down breaks my heart.}

*On the Millon Pre-Adolescent Clinical Inventory:  Brian feels increasingly inadequate and is plagued by self-doubt, a diminished capacity for pleasure, preoccupation with social difficulties, and vacillations between sadness and rage…In general, he feels emotionally out of control and looks to others to help him regain his control, but in frustration becomes rageful and explosive.

*When angry or experiencing emotional upheaval, Brian is in danger of making bad decisions…his emotionality explains his impulsivity…his irritability and poor impulse control likely lead him to struggle with his own peers, which leads him to then become resistant or aggressive when relating to others.

Recommendations included:

*Individual therapy combined with parental education to help Brian improve his current self-concept and to encourage more adaptive coping.

*Psychopharmacological management of his symptoms should be followed thoroughly…work with physician to go back to less potent medication in six months to a year…sometimes neurological maturation can alleviate the necessity of such medications.

*Brian be encouraged to use a computer to complete written assignments

*Always reinforce visual information with auditory information…have him read out loud as he studies material

*Reduce visual clutter

*Greater time limits on projects or evaluations

*Allow him to take tests verbally

It was educational and informative to have the test results, all neatly bundled, with some recommendations that would inform many IEPs to come.  However, even with all that, the MOST HELPFUL advice I received came in reply to the following question (I asked to Dr. L):

“What can I do, what is my role as a mom, how can I best support Brian’s needs based on your observations and experience?”  His brilliant and unforgettable reply: “Your job is to keep him out of the criminal justice system and help him survive his childhood.”

Huh?

He went on to explain that many kids like Brian end up in trouble with the law or suspended from school (been there, done that), or in other negative circumstances.  Often, their autistic meltdowns and tantrums are perceived as “behavioral and deliberate disobedience or mayhem, and are treating by school officials and law enforcement accordingly”.

He shared that with time, many of these kids turn out to be delightful adults.  My job was to facilitate Brian’s maturation, and hopefully with time and patience, he would outgrow much of the undesirable stuff, and retain the “delightful” stuff.

Something about his words resonated and I took the advice to heart. Time and again, we’ve experienced difficulties and challenges in raising a high-functioning child on the spectrum, more so in some ways than our more classically “autistic” child.  Brian appears “normal” outwardly, and the world judges him and his behavior accordingly.  Evan is more obviously autistic and is therefore afforded more deference.  Because he is outwardly smart and academically ahead of the pack, Brian’s misaligned behavior must be due to his being a brat…defiant and obnoxious.  Essentially, that’s the way the world judged him.

Brian found himself in trouble with teachers and staff, many times along his journey because he calls it like he sees it.  Always.  Teachers would say “Brian cannot talk to adults that way”.  And I’d think “well, duh!”  His impulsivity and lack of filter in expressing his opinions were part of his essential make-up.  Telling him to not call it as he saw it?  Might as well ask him to transform into a world-class gymnast or paint like Picasso.  Not in his essential make-up.

I learned, in large part thanks to Dr. L, that running interference with teachers, was where I was most needed.  Frequently, their first reaction was to get defensive and consider disciplinary action.  My first action was to focus on his diagnoses and his needs, and to try and pinpoint the best accommodations. Truth was that until and unless Brian was pushed too far, he pretty much towed the company line.  We just had to figure out how to create that environment in the academic setting where he was stretched but not pushed too far. A win-win for all.

I can’t say thanks enough to both Mary T. and Dr. L.  You’re two of my personal heroes, and you made a tremendous difference.  I strongly suspect that we might not be where we are today without your wisdom, insight, and influence.

Posted in School Daze

A Passion for Advocacy

Part 2 of a 3-Part series on “Best Parenting Practices” (that worked for us!)

I recently wrote that I attribute flexibility to be one of three key characteristics that brought us from the chaos of “then” to the relative calm of “now”.  The other two attributes are a passion for advocacy and recognizing & heeding great advice.  Today I’d like to talk about “advocating with a passion”.

There is so much to learn when it comes to navigating the maze of IEPs, special ed, teachers, school services and accommodations.  Lesson #1 is that showing up is critical!  I’m amazed to discover that some parents do not prioritize attending school discussions and IEP meetings.  If you don’t show up to advocate for your child, who will?

Lesson #2 is that no one, no matter how many academic degrees they have or years of special ed experience…no one knows your child better than you do.  Don’t let yourself be convinced otherwise.  Trust your gut, and advocate for what you know is right.

Early on, I was clueless when it came to the skill of advocating for my boys and the special services and therapies from which they would benefit.  Sensory integration issues, anxiety, and a myriad of other issues related to their ASD diagnoses, limited their ability to participate academically and socially in typical school settings, but I wasn’t sure what exceptions to request or how to go about asking for them.

I attended those first few IEP meetings unclear about my role and relationships with teachers and administrators.  What was the appropriate demeanor? Should I be aloof?  Professional?  Friendly?  I’ve always heard you get more flies with honey than vinegar.  Should I slather on the honey?  I was unsure.  My own Aspie tendencies didn’t help me much in the interpretation department. 

I generally felt outnumbered and a bit intimidated in those early meetings.  At most, it would be Ed and myself on our “side” while school representatives numbered between four and six.  I could have brought more “back-up” but didn’t have friends or family that could provide assistance.  Over the years as I learned the ropes and gained confidence, these meetings felt much less intimidating.

I was quite passionate about creating the smartest, best, most comprehensive learning and development environment for my boys, yet passion was an emotion that I had to learn to keep in check when negotiating with school staff.  It’s easy to fly off the handle when you feel your kids are being offered less than they need or deserve, but a cool, calm and cordial demeanor goes a long way.

Over time, I learned that it paid to establish friendly working relationships with teachers and administrators, yet to be mindful of maintaining boundaries.  The perspective of school staff would always be different than mine.  We had differing mission statements.  Great special ed services are expensive and school system resources are limited.  Their viewpoint is a big-picture, strategic outlook where consideration of limited budgets and staffing are guiding precepts, and numerous students with varying special ed requirements had to be accommodated. I, of course was laser focused only on my two boys and their needs.

Throughout the journey, I discovered that the school’s budget was not my concern.  Their responsibility was to provide an educational framework that met my boys’ needs, even if it was pricier than their financial guidelines might indicate.  Still, in most cases (not always…I’m human after all!) I was careful to not become antagonistic or hostile.  I formed alliances and professional friendships, and I believe it helped…flies, honey and vinegar all considered.  And I have to say that over the years, I was blessed to work with many genuinely talented, caring teachers and administrators.

Establishing great working relationships with our non-school professionals, was also important.  I became a master letter-writer.  On several occasions, when I needed the support of our wonderful private therapists or psychiatrists, they would sign off on letters to the school which I wrote (on their behalf), as long as there was a logical nexus. 

I discovered that across two different states, and three different cities and school systems, almost anything that’s reasonable, is possible.  Sure, it must be appropriate, and you have to link your request with a bona fide academic need.  If you intuitively know, as a parent, that a specific course of action will benefit your child academically, research it, get support from your pediatrician, therapist and/ or psychologist, and propose it. 

Here’s an Evan example:  From the time that we understood his fears (approximately 4th grade up through graduation) it was written into Evan’s IEP that he would be pulled out of the classroom before any fire drills.  I was able to link the fact that he was not available to attend to learning or instruction when he was in a constant state of anxiety, waiting for the next fire drill alarm to go off.  His sensory-based Occupational Therapist supported us 100% and we never had issues with the schools.

Here’s a Brian example:  This accommodation occurred after our second round of homeschooling.  Both Brian and I were in need of a change from the homeschool scene, and I approached the public middle school with some creative requests for his 8th grade placement, supported by a letter, written by me, signed by his psychiatrist. 

By this point, poor Brian had been expelled from third grade, suspended a couple of times while being bounced from private school to homeschool, back to public school, then homeschool, moving to a new city, and now facing the prospect of re-entering public school in a brand-new district where he knew no one.  Saying that he was traumatized would be a gross understatement.

He had a long history of eloping from classrooms, and lashing out against (hitting) well-intentioned teachers who attempted to restrain him.  “Fight or flight” had his picture next to it in Wiki, poor baby.

Letter signed by Dr. G. that I used to support accommodations for Brian

I knew intuitively that Brian needed to be eased back into the public-school system.  Larger classes and long school days would be overwhelming for him, at least in the beginning.  Based on my letter aka our psychiatrist’s recommendation, we successfully set up his 8th grade year with shortened days consisting of individual instruction and/or very small class size.  It was the happy medium that Brian needed to successfully transition to high school the following year.

Here are some other examples…a not-all-inclusive list of some of the accommodations for which we advocated and received over the years.  Each scenario has its own backstory, and if you’re reading and want further info on how it was arranged, please feel free to contact me for more details.

Evan’s accommodations included: 

  • Being pulled outside prior to fire drills
  • Special toileting facilities (no hand dryers, no auto flushes, no locker rooms)
  • A change of schools within-district, from our neighborhood elementary school to another nearby school that had a stronger special education program.  This accommodation was granted based on a letter that I wrote to the school board advocating for the change which included strong supporting rationale. 

Note:  The new school environment was so effective and beneficial for Evan that, even though he graduated Kindergarten, we advocated for him to repeat the grade and he did.  Two of the most loving, nurturing special ed teachers contributed toward a stable and predictable environment.  Evan grew leaps and bounds in two years there.

  • Subtitles for the hearing impaired on instructional videos
  • A ball chair instead of a regular desk chair
  • School bus pick-up and drop-off right in front of our house (the regular bus, not the special ed bus)
  • One-on-one special ed and/ or small group pull-out for subjects in which he struggled
  • We convinced his teachers early on that using materials or examples related to his areas of interest would make their job easier and greatly benefit him.  Whenever possible, they encouraged him to do research or projects on a topic which held his interest, such as football or travel.  He didn’t like to read, so he was encouraged to pursue SpongeBob books, which he found interesting.  This was a very effective, floor time type of approach using a carrot to entice him to engage academically.
  • Reduced/ modified homework
  • Organizational support for class materials
  • OT/ PT/ SLT
  • Consistent special educator /case manager throughout all four years of high school
  • Testing accommodations (Extra time & human reader for tests)
  • Typing notes on a laptop.  His OT timed his written ability vs. his typing speed and it wasn’t even close.  He began to do most of his in-class work on a laptop (before laptops were common)
  • Early access pass to each new school year.  We’d visit the school the week before classes began to take a private tour, learn locations of classrooms and lockers, and meet teachers.  We avoided crowded back-to-school nights.
  • Written class notes provided
  • Field trip support.  Note:  I chaperoned almost all of his field trips to ensure his toileting and dietary needs were accommodated.
  • Duplicate set of school books for use at home

Brian’s accommodations included:

  • A giant beanbag chair in a private admin area and a “chill pass” which he could use to excuse himself from class and crash on the bean bag whenever he needed a safe place to calm himself
  • Public school with partial day (no specials) – 6th grade
  • Lunch in private area with option to invite a couple of classmates to join him
  • His teachers were carefully selected with eye on flexibility and patience
  • Private homeroom time in quiet area with books and worksheets
  • Public school with reduced days and very limited, small classroom size (8th grade)
  • Behavioral interventions/ strategies
  • Pragmatic language assistance
  • Role as courier for movement breaks.  He carried papers or notes from one classroom to another teacher…to provide an opportunity to get up and move about

Outside of school, we took as many opportunities as possible to travel.  It was a critical piece of the puzzle to break down walls and reach Evan.  He came alive, tuned in and fired on all cylinders whenever we were on the road.  Airplanes, boats, taxis, and trains were locomotion therapy and worked miracles. 

From an advocacy perspective, I would get in touch with the school and arrange for travel time to be counted as excused absences.  Typically, there were no issues, as long as Evan completed a project about his travels.  Over the years, he created video diaries, wrote essays and short stories detailing his adventures.  On one occasion, he did a presentation for his class upon returning.  Without a doubt, these experiences were as much or more meaningful for his growth than classroom time.  I cherish each and every memory from our travel adventures.

To me, it’s clear that finding the passion and perseverance to learn how to advocate effectively is absolutely essential for our kids.  They need strong support to obtain the services, schools, staff and accommodations required for their learning and growth.  We certainly did not receive every accommodation that we requested over the years.  But as the saying goes, “if you don’t give them a chance to say “no”, you also don’t give them a chance to say “yes”.  Over the years, the yeses outweighed the no’s by a lot.  Never give up.  It’s so worth it!

Next up: Part 3 – Recognizing and Heeding Great Advice!