Invest in Abilities

These are my thoughts about the current state of diagnostics testing and special education for the neurodiverse…

Diagnostic testing can be helpful for some insight and information, but it is not administered without cost.  It is challenging and unpleasant for the participant to undergo a barrage of testing… and the yields can be underwhelming.

The various tests seem unable to pick up on the subtleties of a person’s less detectable intelligences.

Special education focuses mainly on improving deficits – attempting to close the gaps between same-age peers.  And while that may seem desirable – it puts the focus on lack instead of strength.

My daughter struggles with the basics but excels in other areas – namely creativity and verve.

Both seem to be highly undervalued in the current education system – yet are the stuff of life. What could be of greater value than the joy and exuberance of possibility?

The range of what we value in education and society needs to be broadly expanded.

We need to invest in abilities, not only be on the lookout for deficits.  

While my child’s actions, interests and behaviors may mimic those of a much younger child, she possesses unique perspectives and insight, often speaking with sage and timeless wisdom – out of the mouth of babes.

Creativity is her lifeforce.  

Her mind is overflowing with stories and ideas.  She is a natural entertainer.  She can be hilarious.  She has a light that still glows from within – despite and in the face of some jaw-dropping challenges and the oft miserable accompanying therapies and education programs aimed at diminishing her lack. 

* This paints an unfair portrait perhaps.  At the heart of educational & therapeutic goals are a genuine desire to help. And many helpers have come along to lift her up… but others have missed the mark.

Those of us who are the proud parents of the neurodiverse – know intimately that poorly executed fixes can make things worse.  We spend far too much time in the land of unintended consequences.  

Let’s take Bella’s recent trip to a new Occupational Therapist as an example:

It was a disaster. 

The place had a medical-building-feeling and underground parking. Bella started a nervous meltdown in the car parking lot and I was not sure I was going to get her to the appointment.

Then the elevator. Not a favorite of Bella’s though she has come a long way. We generally sing or do mini dance-parties if we are alone to keep her mind off how much she hates the feeling of elevators. 

But the place itself was objectively a horror. Dingy and small. No proper waiting room. Low ceilings. Closed doors. Tiny.

The therapist was a non-native English speaker and with the mask, it was really difficult to understand what she was saying. 

The therapy room had a swing, which was the only thing Bella liked. But while she was sitting at a work table doing a building activity, another child was on the swing. A very large boy, and the room was so small, that the swing was swaying over her head. I thought surely she would be kicked. He seemed to have Tourette’s in addition to his autism for as he was swinging, he was yelling out random naughty words.

This was Bella’s first time with such an experience and she was very startled and confused. Some of his words were benign, like “air conditioner” but other words and phrases, more unpleasant – “poopy pants” or “you have poop in your pants” – his therapist shouted at him “Shoes!” “Outside!” Then abruptly left the room.

The boy looked sad. As he put on his shoes, he muttered to himself, trying to sort out what he had done wrong.  He seemed to know it was the words.  After his shoes were on, he walked to the TINY concrete outside area – like the size of a small dog run, and his therapist rejoined him. 

After the building activity, Bella played emotion bingo, which she disliked.

Then her time was up. Her therapist walked us unceremoniously to the small crowded waiting room… and we left. The parking fee was ridiculous and the therapist said that we should in future park in the grocery store parking lot across the street and walk over to avoid the fees. 

Bella was visibly shaking after that experience. She kept stopping me and saying, “Mama hug me.” Then, “A hug isn’t enough, I need you to hold me.”

We went to do our usual shopping, but she wanted me near her at all times. We have been buying vegetarian sushi at Whole Foods and having a sort of tailgate picnic in a sunny calm nearby neighborhood.  But Bella was still frightened and kept asking if she was going to “catch” what that boy had…  I explained to her that she couldn’t catch Tourette’s, but she still felt unsure.  

Suffice to say, we did not go back.

I wrote this letter to her IEP team to have OT stricken from her IEP entirely…

Hello Team,

I am writing to request that OT goals be removed from Bella’s IEP services..  

As was our past experience, Bella had a very negative response to the initial therapy session and no net benefit.  She had nightmares from the experience last night and received the therapy as punitive – a punishment for having a brain like hers.  This rings identical to our former experience with OT, and after discussing with her father, we agree that this goal should be removed.  We will work privately to produce the desired outcome for getting her to use her hands with greater frequency.

Please let us know what formal steps need to be taken to reflect that OT is no longer a service we are requesting through her school program.

In response I was told that OT could not be removed from the IEP, as she needs it.

Ahem, no one needs hell.

We need creative educational & therapeutic environments that will really make children bloom.

Time’s a ticking for my daughter, and so many others like her who cannot be meaningfully served by the status quo. Their gifts want cultivating here and now… not in some mythical time or place.  

I wish that every school and therapeutic environment would value creativity and reflect that in its aesthetic and approach – be places where all sorts of children could grow and thrive.

Unfortunately, the onus of her outcomes rest on me.  So I have to invent the path. We currently homeschool so that she may have the time to engage in enrichments that have meaningful impact. 

Isn’t that what education should provide?

I marvel at her courage to trust and try again.  She willingly participates in arenas that cause even people without deficits to hesitate.  Riding, swimming, surfing… 

There are times when not being able to quantify the difficulty can be a benefit to courageous action.  She has been thrown and has fallen over and over again… and the tumbles do not stop her.  

Should there not be accolades for those who fall and so gallantly rise up to try again?  I gaze at her in awe for this… but I feel alone in my understanding that these are tremendous merits.

So what could improve education for the neurodiverse and beyond? I believe joy-based learning.  Invest in bliss.

We are renting instead of buying if we do not invest here.  We want the mineral rights with these unique souls… the land underneath holds something precious and we will all grow richer if we endow wisely.

“We must let go of the life we have planned, so as to accept the one that is waiting for us. Find a place inside where there’s joy, and the joy will burn out the pain. Follow your bliss and the universe will open doors where there were only walls.” – Joseph Campbell

What does that look like for my daughter?

Rainbow Girls is just the tip of the iceberg for what we have planned.  So many of Bella’s stories & ideas want telling, as do those of her neurodivergent cohort.  We hope to bring about a revolution in education and action for children underserved by the current system.

I look to other storytellers for inspiration as to what potential there may be with the right accommodations…

Enid Blyton, Bella’s favorite author, was a genius writer for young children.  Her own daughters have suggested that her writings were a form of trauma coping.  Postulating that when Enid’s father left the family when she turned thirteen, a part of her brain froze in time, which made her a marvelous storyteller for those in that age category.

Beatrix Potter knew her share of adolescent struggles.. “Bouts of depression and occasionally poor physical health plagued her. Despite these obstacles, she was determined to make something of her life, noting in her journal, “I must draw, however poor the result….I will do something sooner or later.” Educated by a governess.  Lots of freedom in the countryside and with animals.  She eventually came to prominence through the sharing of her enchanted stories. 

Lewis Carroll spoke with a stammer and was unhappy at school… and went on to share his madcap visions of a beloved imaginary world we all affectionately know as Alice in Wonderland.

I could go on endlessly about the imperfect beginnings of some of our most treasured children’s authors…

Yes, you say… but… those persons were all classically intelligent in addition to being creative storytellers – and your girl scores dismally in that first category.

Think that will stop her? 

Insider tip: Place your bets on the longshot.