Grandmothers always dote, I suppose, on granddaughters. They can have relationships with them unlike any they have had with their daughters. That unconditional, positive, you-can-do-no-wrong kind of love for the little ones that hold a special place in your heart. That I am out shopping and have to buy yet another sticker book, another dress for my granddaughter is a testament to how much she fills my thoughts. I am blessed to have such a relationship with Alexandra.
In the five years that I have known her, Alexandra has taught me much about neurodiversity and enriched my heart more than any one can imagine. When she was born, she was a large premature baby, stayed in the NICU for some time, had difficulty with her heart, and eventually went home with an oxygen tank. Despite her being surrounded by caretakers and nervous family members worried about her well-being, she seemed to grow like other little ones.
Her first words were “clock” and “one.” I thought she was very much like a little judge – she could sit and pour through her books with great intensity or stay on task. Then we noticed how certain fabrics bothered her and she would seem to stare off the way a dog or a cat stares at walls. She did not smile nor respond when her name was called. She seemed to be distant, in a far away land.
My daughter – mother to Alexandar – bless her proactive soul, took Alexandra to a pediatric psychiatrist and subsequently to the UCLA Neuropsychiatric Institute where she was assessed and it was determined she had an information processing disorder – most commonly known as autism.
Suffice to say with the help of UCLA Jasper, Early Intervention Programs and a slew of dedicated professionals who worked with Alexandra on speech and other social and communication tactics, she is entering kindergarten this year. She laughs, smiles, hugs, rides ponies, likes ferris wheels, swims, smiles, gives the best hugs and enjoys life much the same way any other 5-year-old does thanks to early intervention.
Through my experiences as Alexandra’s grandmother, I’ve learned quite a lot about autism. The truth is a child born with an information and sensory processing disorder relates, learns and responds to the world differently. In fact, on April 26, 2018, the Centers for Disease Control and Prevention (CDC) released new data on the prevalence of autism in the United States. This surveillance study identified 1 in 59 children (1 in 37 boys and 1 in 151 girls) as having autism spectrum disorder (ASD).
I have learned that information that comes into their brains can come from outside or inside their body. Instead of information leading to self mastery and control, it leads to confusion and the information becomes assaultive, scary and/or abrasive, thus making emotional and psychological attachment difficult. If brain development begins in utero, then there must be a genetic component to autism as well as an environmental element as in the case with Alexandra.
Oftentimes a child misinterprets their own body sensations, emotions, thoughts or social situations. Imagine how challenging this could be from birth. Now add in autism and imagine how confusing and frustrating this would be for socializing and forming attachments to people, places, memories and feelings. It perhaps feels like thousands of stimuli attacking you at once and you are not sure of how to respond. What happens is the amygdala and limbic systems are overdeveloped and gain priority when persons with autism feel threats.
Temper tantrums, outbursts and emotional turmoil may well be an attempt to cope with the rapid fire of stimuli so one has to slow down, break it up into small increments and teach in a way that information can be taken in and processed in their way.
With these kinds of learning challenges, the ASD child experiences a bombardment of stimuli and may in turn block care and trust from family, loved ones, caretakers and educators. Attunement, or the process of becoming responsive, is learned by consistent, predictable actions that lead to routine responses. So our usual care taking efforts may be perceived and blocked causing the caretakers more anxiety and hence the cycle begins.
Though the challenges are real, the truth is families and professionals can spark growth and development in autistic children. One such scheme that appears to work quite well is attachment, regulation and competency (ARC) framework developed by Margaret Blaustein, PHD and Kristine Kinniburgh LICSW. The framework is both useful for the person with autism and the teacher/caretaker. It gives training tools and tips for the teacher/caretaker on how to train and respond to a neurodiverse learner. I have had the privilege of learning about this framework and the organization behind it, which has a passion for neurodevelopmental processes that guides every intervention, and with intentional focus they guide families to more effective and healthy possibilities.
In fact, ARC’s foundation is built upon four key areas of study: normative childhood development, traumatic stress, attachment, and risk and resilience, according to their website. “Drawing from these areas, ARC identifies important childhood skills and competencies which are routinely shown to be negatively affected by traumatic stress and by attachment disruptions, and which – when addressed – predict resilient outcome.”
In addition, with the skill of OT and sensory reintegration activities, one is able to teach and stimulate PACE:
In conclusion, granddaughter has taught these gifts:
1. The beauty of neurodiverse learning.
2. The neuroplastisity of our brains.
3. How sensory reintegration works.
4. The power of love – curiosity and empathy.
5. How to think outside of the box when working with folks – start where the client is not where your training is.
6. Consistency, predictability and repetition. Rituals are keys to learning.
7. Playfulness and curiosity, kicking up your heels, spinning, dancing, riding horses and other outdoor activities are joyful.
8. Hugs are the best for kicking in endorphins.
9. The human spirit is resilient.
10. Everyone has a discoverable gift.