I began this venture 14 or 15 months ago, at the time I had no idea what a blog was, who wrote them or why. I knew blogs existed in the periphery; since that time I have read hundreds, if not thousands of blog posts by many authors. I am grateful for the insights and information, for both the light-hearted and serious nature of Autism blogs. I hold in great esteem the parents of Autistic children, and those on the Spectrum themselves, who find the time to share their experiences and opinions. This little hobby of mine was born with the notion that if I found something interesting or thought-provoking as a parent and advocate, there might be others who felt the same. The posts about my son Mike. and his journey through life with Autism, is also a commentary about my life, my family members’ lives, and all those he encounters.
Every day I stand in awe of his burgeoning ability to communicate with others; he is verbal and has an expansive vocabulary, but his sharing of those words with others, through various media as well as interpersonal interaction is what grabs my attention and holds my appreciation. Recently I have been telling his tales of computer prowess thanks to Nassau County PAL‘s Special Needs Unit. To someone looking through that glass window that is on every college classroom door, it seems like he is any other kid learning a rudimentary electronic skill. But it’s not; the things he is working on is a combination of his imagination and ideas which he translates to pictures, words, transitions and stories, with the help of the all-powerful Internet. He takes these ideas incarnate and will transmit them electronically; learning to integrate his thoughts and ideas with methods of communication. Part of what he is working on is some kind of presentation. I have no idea what this presentation entails and I don’t want to spoil the spontaneity by knowing its details (aka, peek) before he’s ready to unveil it. He so looks forward to this class and this project that it literally puts a bounce in his step. When was the last time your autistic child looked forward to something? Even mundane, drawn-out activities like homework seems to go smoothly, sometimes even voluntarily done early rather than postponed till the last possible waking moment of the day. No, its not the same as that reaction of the choice to play video games or doing math. It is so much more than that.
It is a concept that changes an attitude. It is a wholly visualized goal; one that he knows he can attain, yet attaining it doesn’t diminish it’s inherent value. It is a window into his mind; how he sees his work, his passion, his worth. It is a glimpse into what turns that switch on; a veritable springboard toward something greater that he can someday achieve. That thing that gives him purpose, though short-lived as it is, is precious. That thing that makes us wonder what just happened, and what did you do with my work-averse kid. It is that thing that we wish was present in every lesson and task, and in every interaction with everyone, ever. It is that thing we seek: the Holy Grail of Autism: that fleeting, shining moment when we forget all about Autism and just are who we envision ourselves to be; life without the spectre of disability.
Many advocates may argue the term disability, preferring the term ‘differently-abled’ and I understand, but respectfully disagree with, that argument; my son is at a disadvantage when it comes to so many things because of autism, so the term ‘disability’ is not meant to be derogatory. It is what it is. But that’s a topic for another day.
Part of the equation is recognizing that there is indeed a palpable difference between positive reinforcement and everything else. Years ago, when Mike was in what someone might call a Special Ed class, that had no pedagogical identity, i.e., no idea how to teach Special Needs kids, the psychologist seriously wanted us to allow them to let Mike know that there were consequences to behaviors. This same psychologist, at one point, also questioned Mike’s diagnosis of Autism/PDD-NOS and asked if he was ‘bipolar’. My point is, autistic children are not immune to negative attitudes directed toward them, and predictably respond in kind. Just like everyone else. Little things like a high-five and verbal recognition of a job well done go a long way towards instilling a positive sense of self in our children. Like neuro-typical children, many autistic children have the ability to distinguish between different paralinguistic cues, like tone and volume, in the words they hear and interpret. This helps to re-set their emotional responses during a conversation or interaction; a harsh or angry tone is very likely to elicit a similar response from an autistic child, regardless of the actual words that were spoken. Therefore a day, or week, or more of praise and positive reinforcement will yield immeasurable benefits in other areas of a child’s life.
Here’s the catch: we as parents have to be able to recognize this. We have to be able to say, ‘well what do we have here?’ and figure out how to tease every ounce of this spark out of him, so that it touches more aspects of his life. It is not just ‘he’s having a good day’; it is something we want to replicate as often as possible. We also have a responsibility, I think, to share these lightbulb moments with others. Despite the differences from one child to another, as parents we need to live vicariously. We need the success, and to a lesser degree the failures as well, of others. We need to see success stories, and learn to adapt them to our own situations. We know, however, that we can’t possibly bottle that thing, and have it at the ready. So we learn to enjoy those golden moments and try to share it with others by blogging or posting on Facebook, or other social media.
This is where I come back around to my point about autism bloggers and the phenomenal work being put out there by bloggers. Wordpress, for example, has so many valuable posts by parents and advocates, not to mention other notable ASD-friendly sites like The Huffington Post, among others.
From this autism parent and blogger to all those others who write, provoke thought and inspire, I say “thank you”. I look forward to your next post. -Ed
- Thoughts about “The Thing about Autism” (autismslove.wordpress.com)
- 1000 Ausome Things #AutismPositivity2013 Flashblog Announcement (autismpositivity.wordpress.com)
- Be Autistic: Be amazing (nrgallowaymiller24.wordpress.com)
- The 12 Myths Of Autism (beyondautismawareness.wordpress.com)
You may have heard of Jake Barnett, the autistic boy-genius from Indiana who began taking college courses in astrophysics at age eight, became a paid scientific researcher at 12 and was the subject of a 60 Minutes profile last year at 13. And you may have wondered, as I did, what kind of parents would do that to their kid. In The Spark: A Mother’s Story of Nurturing Genius, you find out exactly what kind of parents would do that — the kind who had no choice.
This engaging memoir by Jake’s mother, Kristine Barnett, follows the development from birth of a remarkable boy who forced his rather ordinary parents — a modest young Amish daycare teacher and her wrong-side-of-the-tracks husband — to become extraordinary. If they hadn’t, this unusual child with an off-the-charts IQ of 189 might have been lost to the world forever, locked up in what Kristine calls “the gaping, gray uncertainty of autism.”
Diagnosed with moderate to severe autism at age two — his developmental delays were textbook — Jake began top-flight therapy from a dedicated phalanx of experts. In fact, therapy took over the family’s lives. “You eat, breathe and sleep autism,” Kristine writes. “Life with an autistic child is a constant race against the clock to do more, more, more.” Yet Jake was doing less. He stopped talking and making eye contact. He seemed interested only in the very obsessions the experts were trying to curb, such as staring for hours at shadows on the wall, looking at alphabet flash cards or hauling around an oversized astronomy book he could scarcely carry
Against the advice of the experts and initially the wishes of her husband, Kristine mustered the courage to follow her instincts and take her son out of therapy and his special-ed preschool to give him a “normal” summer. She tried building sandcastles, blowing dandelion fluff and making s’mores over the backyard brazier. Jake wasn’t very responsive. But when they lay on the hood of the car and looked up at the night sky, Jake seemed focused and content.
Encouraged, Kristine took him to view the sky through the big telescope at the local observatory, not realizing till it was too late that the evening included a talk by a professor. Hardly an event to take a nonverbal, developmentally delayed preschooler, Kristine thought. But Jake, now almost completely disengaged from the world, suddenly snapped to life, discussing lunar gravities with the prof. He was three and a half.
While this gave Jake’s shocked parents a glimpse into their son’s blazing intellect, life didn’t get any easier. Kristine, with her husband now bowing to her intuition, went to extraordinary lengths to help Jake make friends and get mainstreamed into a regular school. Jake withdrew into a black hole again until a neuropsychologist almost ordered his parents to take Jake out of his grade five classroom, saying, “He is deeply bored, and if you keep him there you will stifle every iota of creativity he has.”
Not only does The Spark give us insights into the fantastically complex world of autism and its effect on families, but it’s a galloping read, full of heart and self-deprecating humour. Kristine is aware that her obsession to find “the spark” not only in Jake but in every one of the children who attend the daycare she runs in her home can get a little over the top: on one occasion she actually brings home a live llama.
She’s also aware that most children with autism aren’t profoundly gifted, as Jake is. But she truly believes every parent can discover and nurture their child’s spark. Her generous spirit has led to her creating successful nonprofit programs for autistic kids and their families in her community. This, despite a host of personal problems of almost biblical proportions: flood, fire, poverty, hunger, a second baby with a life-threatening medical condition, and a stroke at age 30.
Meanwhile Jake, now 14 and set to graduate soon, has thrived at university, loves mentoring fellow students and is working on an original theory in the field of relativity that could one day win him a Nobel Prize.
Special Needs Parents are a special breed. Parents of typical children don’t get it, and probably never will. We revel at every inch of progress our child makes. We know our child may quite possibly be forever delayed intellectually, emotionally, socially and physically, as compared to their peers. This knowledge also imparts upon us the beauty and fragility of our child. “There but for the Grace of God go I” is the quote we have heard many times. We marvel at their progress and exult in their attainments because we realize their potential. That potential is virtually limitless. As parents on the Spectrum we have learned about many famous historical figures, geniuses and icons who were (actually or likely) autistic. That next step, that complete sentence, that piece of art, that next thing they do (we hope) will unlock that little section of his brain, and bring our child closer to reaching that potential. We are, as described in the exerpt below, ever vigilant of our child’s milestones because, more than anyone else they encounter, we provide comfort and reassurance; essential components of nurturing parents. We commit every verbal and visual nuance to memory; knowing the difference between crying and really crying. No one taught us how to be Special Needs parents. For all the how-to books and blogs, we know our path is as unique and individualized as our child is; hopefully along the way we intersect with other parents who have a shared experience that will help us on our way, and vice versa. Special Needs parents are indeed a special breed: tenacious, patient, strong of will and backbone, educated, passionate and compassionate, and ever-present. This is our figurative cross, and we bear it gladly. Please click on the links to view the full article. -Ed
I don’t tell her that I will never forget the first time that I heard, “Look, Mama.” I don’t tell her that my baby girl was just three weeks shy of her 6th birthday when she pointed to the blue house — the one I’ll never forget — and said those words.
- Glowing With Autism (beyondautismawareness.wordpress.com)
I always get a little ambivalent on Father’s Day. The day itself is fine; love the breakfast and the gifts (more on that later) but as it should, gets me thinking about my father. My father was a hard-working man, who was both there and not there. Growing up, he was there for all my baseball and basketball games, and he took me and my sisters to his downtown Manhattan office when the ‘tall ships’ sailed into the harbor during the Bicentennial; his office had a fantastic view, located one block away from the Twin Towers. He was there to instill into me a strong work ethic, and the black and white understanding of right and wrong. I remember going with him on Thursday nights as he worked our parish’s BINGO games with his friends; I didn’t do much there so I wound up bringing books to read. It was there one night where I brought 2001: A Space Odyssey to read for the first time; I remember that was the book that opened up reading in general, and science fiction in particular, to me.
He was not there to ever talk to. We never had “the talk” about girls, he never asked me why I chose to apply to the colleges that I did, or why I chose the profession that I did. Perhaps that was just his nature. Growing up, my parents argued a lot; yelled and threatened to leave each other many times. Divorce was not an option back then so living in silent angry withdrawal was an almost constant state from the time I was a teenager. I remember learning that my family was a living definition of ‘dysfunctional’ quite early in my adolescence.
After he retired, he moved ‘back home’ to the Philippines, where he spent his time living a simpler life, I guess, until he became very ill with pneumonia. As a disclaimer, I am a snob when it comes to things Filipino; the food’s great but the country is as backward as it is poor. I remember when he got sick his doctors wrote to us to send his antibiotics to him. Eventually we had to go to the Philippines and bring him back to New York. By that time he had become a shell of the man he used to be; appearing physically smaller and his mind now ravaged by Alzheimer’s dementia. After coming back to New York, his life was never the same; he needed someone to care for him and help with his ADLs during the day when everyone was at work, and his dietary tastes were limited so he became even more frail. He would wander off in the neighborhood after his home attendant left.
He did get to meet my fiancee and eventual wife, and attended our wedding. Hopefully he was able to keep some of those memories in the year or so until he passed away. It is sad that he never got to know my children, never saw them grow up, or proverbially bounce them on his knee, never saw them achieve milestones, never slipped them a dollar on the side, never pushed them on a swing.
The fact that he is not around on Father’s Day is not lost on my sons. As he has done on a few occasions in the past, and quite out of the blue, Mike said to me yesterday, “Dad, I’m sorry your mother and father are in heaven”. He has previously asked me if I missed my parents, and the like. Perhaps he saw a look on my face yesterday that I had on Mother’s Day, and picked up on it; not that I think I made a face. My son has a flair for empathy at times, which gives me great hope for his future on the Autism Spectrum.
So I got to pick out my breakfast yesterday; after Mike made me my first cup of coffee, my wife and sons made me a wonderful breakfast of bacon and eggs. Delicious! Afterward came the cards and presents. I received new shorts and shirts (because my kids don’t like me wearing my old, faded tank tops in public), new boat shoes (because my kids don’t like me wearing old, worn boat shoes) and a cordless circular saw (so I can build a ‘poop deck’ to hang out on, for when we’re pooped). I got great cards, of which the highlight is:
Mike has been determined to get me or either of his brothers a new pet, ever since our beloved Golden Retriever Riley passed away earlier this year, if only to keep our other dog Cosmo company. He asked if we wanted a lizard, baby crocodile (!!), macaw, or shark. We settled on a fish; so later in the afternoon, we went to Petsmart, picked out a nice blue and burgundy-colored Betta fish, a new tank and some iridescent gravel. He named him “Blenny”, a combination of Blue (from the movie “Rio”) and Lenny (I’d like to think this was from “Laverne and Shirley” but I doubt it). Happy Father’s Day Dad!
I am truly blessed to have my family; hopefully I have become the dad and husband every man aspires to be, present physically and emotionally when they need me to be. I know my wife and sons have conspired to make me the man I am today, and for that I’m eternally grateful. Last night before going to bed, I said to my oldest son, “Thank you for a nice Father’s Day”. Usually he’ll say just say ‘you’re welcome. Without batting an eyelash, and without prompting, he said to me, “Thanks for being my father” and gave me a hug. It was the perfect ending to my Father’s Day.
It is Graduation season, and to the many graduates out there, and especially their parents: congratulations on what is surely to be the first of many successes. I wanted to share this video, from a graduation in 2010; it speaks of the indomitable spirits of the student and his parents, and the limitless possibilities of families on the Spectrum. Enjoy! -Ed
To Those Who Know What It Means to Be Reborn A Mother
The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~ Rajneesh
I knew that motherhood would change me.
Or at least I knew that it would re-order my priorities.
What I didn’t know was that it would re-order my soul.
I didn’t know that in lending my body to my babies I would surrender my very being to a process unfathomably larger than myself.
I didn’t know that in so doing, I would find faith. And Faith.
I didn’t know that along with my babies’ births would come a vulnerability that would settle permanently in my heart.
That although the physical scars would heal, the karmic chasm would remain open and raw — letting in the extremes of the joy and pain of this life as a mother — unfiltered, unadulterated, unmitigated.
What I didn’t know was that loving my babies would be the greatest gift imaginable.
***To those who mother slowly, thoughtfully, cautiously and to those who throw themselves headlong into the messy, sticky, torturous sweetness of it all without ever looking back,
To those who keep a strict schedule and to those who don’t keep a strict anything at all,
To those who home-school and to those who are relieved to see the yellow bus in the morning,
To those who sing in the choir and to those who pray quietly every night at their babies’ bedsides,
To those who bake for hours and to those who stop at the bakery on the way home from work,
To those who hold their children close and to those who can’t wait to meet the children who will become their own — knowing they are out there somewhere, waiting to come home,
To those who mother intuitively and to those who over-analyze each and every decision they make,
To those who write their stories and to those who read them,
To those who have lived through the unfathomable pain of losing a child and to those whose hearts are with them.
To those who shout from the sidelines and to those who coach the team,
To those who pray that someday their child can BE on a team,
To those who have children with special needs and to those who teach their children respect and compassion for those who do,
To those whose children can say, “Thank you, Mom,” with words and to those whose children don’t yet have words and yet say just that — and so much more — every day,
To those who testify before congress about autism and the support that the community so desperately needs and to those who work for months to summon the courage to talk to one neighbor about their child’s differences,
To those who change the world simply by showing their children the rewards of a life lived with empathy and love, respect and appreciation for their fellow human beings,
To those who know what it means to be reborn a mother,
A very, very Happy Mother’s Day.
The preceding was originally posted on my blog, Diary of a Mom on Mother’s Day, 2010.