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.

Author:

I am an Autism parent, an Aspie, and married to an Aspie, Ed, my husband of 24 years. I’m writing to share our story, which is the real-life drama of raising two boys on the autism spectrum. Our story contains tragedy, comedy, lots of action, conflict and adventure. But it’s also the story of the evolution of an autism parent. For as much progress as my sons have made, I may have made more. I’ve become who I am today through their struggles and triumphs. People have told me over the years that I am a hero and role model. I don’t feel that way. My superheroes are Brian and Evan, and maybe my superpower has been in raising them. They are true trailblazers and the wind beneath my wings.

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