Raising My Twice-Exceptional Children… Not What I Signed Up For! Pt. 1

car

By Sarah Garrison

“So, what’s up?” my husband asked when he called tonight.
“Not much; I’m in the car,” I replied.
“Oh?  Where are you going?”
“I’m out of here; I’m heading west.”
“—Anywhere in particular??”
“Yeah – I’m going home!”
“ Seattle?”
“You got it!”
“Are the kids with you?”
“No – they said they were too busy playing with Legos.”

I wasn’t really in the car, heading “home.”  My husband is out of town again, and sometimes when we are able to communicate only by cell phone I need to be sure that I have his attention.  Tonight, I was merely joking about leaving.

At other times, the idea of escaping to my spiritual home in the Pacific Northwest is less of a joke.  There have been many evenings over the past four years of homeschooling when my husband was genuinely surprised and grateful to find that I had not packed a suitcase and caught the next flight to Seattle, leaving the kids with “Walking with Dinosaurs” and a huge bowl of popcorn.  Recently, life has been running a bit more smoothly.  Life is far from ideal, but we can see progress.

If you have been active in the gifted community for long, odds are you know someone who moved in order that his/her child might have access to better schools or a better gifted program.  You also might know families who moved so that they might homeschool their children and scrape by on one income.  May I now introduce my family, the “twice-exceptional” family:  We moved from one coast to the other, leaving the beach and a town we loved, not for better schools, but for the opportunity to buy better health care.  Our gamble in California real estate, coupled with a nice promotion for my husband, afforded us access to specialists that we could not enjoy before.

My elder son, commonly known as “Origami,” has Tourette SyndromeADHD, and a variety of other clinical and sub-clinical diagnoses over which the doctors are still arguing.  He also is profoundly gifted.  To say that Origami is a “real handful” is to grossly underestimate the magnitude of our daily challenges.  After what seems like a lifetime of fighting and begging for help, we are at last finding doctors and specialists who can help us work through our son’s issues and improve the entire family’s quality of life.

When I am asked how long I have been fighting for services and resources for my son, or when I first noticed something was amiss, I do not know how to answer.  We have been homeschooling for nearly four years – a decision rooted in an abrupt departure from a toxic preschool situation.  We first actively sought the help of specialists when Origami was three years old.  We begged our pediatrician for help with a severely colicky, fussy infant and a sleepless toddler.  We nicknamed our unborn son “Calvin,” as he had frustrated the OB nurses’ attempts to place an external monitor by turning and kicking the monitor every time they moved it.  So, from the beginning we had the feeling that we were going to be in for a wild ride.

At the same time, Origami was our first child, and neither I nor my husband knew what to expect or how our demon child compared with “normal” children.  On my rare, frenzied trips to the mall with my newborn, I noticed that there were other mommies out and about with their babies.  These mommies wore lovely floral dresses.  They chatted with each other while their babies dozed in their prams or strollers.  As I ran past, shrieking infant strapped to my chest, wearing my husband’s t-shirt (decorated with huge spit-up splotches) and some leggings I had been wearing for – oh, a few days – I couldn’t help noticing that those mommies did not look like me, but I did not know why that was.  My husband and I thought it odd that the “What to Expect” books described infants who slept 18 hours per day, when we knew darn well that babies sleep only five (non-consecutive) hours out of 24; but given that those books also described “prodromal labor” as a time for baking cookies and catching a movie when everyone knows that it really means four days of h*ll and pacing, breathing, pacing, breathing, we assumed those books had been written by men who had no clue about real babies or real labor.  Later, we perused the developmental charts in those same books.  Who knows why we were still reading them.  Again, we thought it was odd that our child’s development was progressing at roughly double the rate described in these guidebooks, but we assumed the milestones were timed generously to mitigate maternal worry.  Either that, or the authors were fools.

The toddler phase was blissful.  My husband and I had grown accustomed to functioning on 4-5 hours of sleep per night, I had discovered that the lines at Safeway were remarkably short at 5:30 a.m., and Origami was enjoying exploring and learning about his kingdom with all his might.  Things began to fall apart when Origami’s little brother, Bilbo, arrived one April 1st, thanks to my truly wonderful doctor who just might have chosen April Fool’s Day for a reason, after nine months of appointments with my very loud, energetic and enthusiastic two-year-old.

My high-energy toddler turned almost overnight into a challenging, high-maintenance preschooler.  Sleep was still a challenge, toilet-training was a challenge.  People began to ask me if I had chosen a pre-school.  I had not even thought about pre-school.  I was a bit surprised to learn that “everybody” sends their children to pre-school.  In retrospect, I realize that these are the same “everybodys” who go to the movies in the early stages of labor, who dress their infants in adorable coordinated outfits without worrying that Baby will projectile-vomit all over his Baby Gap layette as soon as he is picked up, who can actually eat, bathe and sleep each day because Baby takes a morning and an afternoon nap, each day, every day.  So much for the value of 20-20 hindsight.

As we tried to adjust to life with two boys and moved across the country to the Great Midwest, our challenging preschooler became a one-man wrecking machine.  I was bewildered, exhausted and stressed out – not to mention very unhappy about leaving Seattle for the flatlands.  I decided it was time to put Origami in preschool.

Origami spent two years in what was reputed to be one of the best preschools in our area.  During that time, his behavior became more and more challenging, and he became increasingly unhappy.  He also developed some repetitive habits: he continued to brush his hair out of his eyes long after we had trimmed it; a tendency to clear his throat persisted long after the cold that triggered it had passed (and in fact it continues to this day), likewise with rubbing his nose.  We did not give much thought to those little habits, as I assumed that most people have little “things” that they do.  We were much more concerned about Origami’s behavioral issues.

Our homeschooling adventure began abruptly, when we realized that a bad preschool situation had become intolerable.  Every day, it seemed, Origami left school either in a rage or in hysterics.  The school staff’s attitude toward him had changed from frustrated and irritated to abusive.  My husband and I had spent countless hours working in support of the school and trying to make school work for Origami.  We realized our efforts were not paying off, and our child was deteriorating.  So we left.

In the years since then, we have had many ups and downs with Origami.  Removing Origami from school produced an immediate positive change in his behavior and in his state of mind, but it was not a long-term solution to his problems.  Over the years, we have been to specialists of all kinds, of varying levels of competence.  Someday, I will write an account of the professionals we have met along the way, but now is not the time for that.

It is only in the last three months that we have been able to find people who can help us and who have helped Origami.  We finally spent the time and money needed to take our son to someone who specializes in twice-exceptional children.  From there, armed with our first real, credible diagnoses, we have been fortunate to find the Tourette Syndrome Association of New Jersey and specialists at the state’s universities who have enabled Origami to make huge strides in his behavior, his outlook, and his ability to cope and to function independently.  Our situation had deteriorated to a point where homeschooling no longer was a viable option.  The stress homeschooling was creating for all of us was just too much to bear, and I needed to find someone else who could take over Origami’s education.  Now that we are making progress, I am able to look at homeschooling once again as something that might work for our family. I also am able to work through some of my anger and frustration over the years wasted as we tried in vain to get help for our son.

Homeschooling does not always work well for us; I still have days when I am sorely tempted to leave my pajama-clad darlings at the door of our local school.  Some days are exhilarating blurs of learning and creativity, while other days are spent begging everyone to eat breakfast.  Very, very few days actually go as planned -- which is not a good thing if one or more of you fears change.  The challenges we face dictate the course and structure of our days, and I try to adapt as well as I can.


This is the first article in a two-part series. Part Two is 2E Homeschooling: The Sequel


Sarah Garrison blogs at The Best-Laid Plans.

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