My name is Lori Fulk, and it should be said up-front: I used to have very big plans. I was in my 30's and happily ensconced in a Neuroscience Research career when I met a funny, smart guy, and married him. We could have stopped there, and stuck with our "very big plans", but God has some plans of his own. We now have 2 gifted daughters, 1 who is "twice-gifted", which is a fancy way of saying some gifted kids are born with Special Needs. It makes for one crazy game of Poker, I assure you. And because humor is my first-line drug of choice, I started writing (and laughing) about our family's journey 8 years ago. Parenting has taught me many things, but the most important being we all have ideas about being parents, until the actual birth of our children. Wisdom in parenting doesn't come quickly, and it certainly doesn't come easily. Wisdom Comes Suddenly.
Lori Fulk | December 12, 2013 | 08:36 PM
I am often called upon to meet with parents who have a newly diagnosed 2e child. 2e, or "Twice Exceptional" is a broad term for children who are academically Gifted, and also possess a secondary diagnosis: Learning Disorders (now called "Differences", or LD for short), ADHD, Autism Spectrum, Mental Disorders, Sensory Processing Disorder (SPD), other Processing Disorders, such as Language-based Processing Disorders, any one of the Dys- Disorders (Dyslexia, Dyspraxia, Dysgraphia, Dyscalculia), etc. 2e children can have any one of the above, or a combination. I have a bright, spirited daughter who is a 2e student. She is a kind and loving child, with a clever conversational ability. She also has Dyspraxia, SPD, ADHD, Dyscalculia, and Stress Urinary Incontinence. She can be temperamental, inattentive, and on occasion, downright angry. When I say parenting a 2e child is a lot like bull-riding, I'm not exaggerating for the sake of illustration. I'm just referring to yesterday's car ride home from school.
With a background in ADHD Research and Nursing, my friends and colleagues thought I was in the perfect position when Sara's diagnosis list surfaced. "Wow! God sure knew what he was doing when he gave you Sara! Who could possibly be a better parent for a child with her challenges?" My gut reaction has always been, "Anyone but me." I'm short-tempered, perfectionistic (but I'm working on it!), and schoolwork came naturally to me. A perfect parent for an ADHD child? Do those exist? My adventures in parenting have taught me a valuable lesson: no matter your background, and no matter your skill set, no one is prepared to parent a Special Needs child. Here are the corrected assumptions to those who might think I am "qualified" to be the "perfect" parent:
(1) I've read and memorized ALL "the books".
Special Needs parents know what I mean by "the books". We have bookshelves dedicated to "the books". If there is an expert willing to tell us in 400 pages of text how to make it better, we'll buy it. While I read a few before I had children, I studied them intently in Sara's first few years of life. I carried them around like tiny Bibles, so much so, that when my 2nd daughter cut her finger as an infant, Sara grabbed a book, flipped it open, and started yelling "Top da' baby tom tying". At the age of 2, Sara knew if a baby cried, you can "stop the baby from crying" by reading a book.
In fact, Sara cried so much as an infant, my husband estimated I had spent a year of college tuition on "things to stop the baby from crying". Birds to sing in her crib, a variety of bouncy seats, spinning entertainment centers, and books. So many books. I am certain not a single item purchased had been proven to work in peer-reviewed research. Greg was finally able to convince me I would not be able to buy my way out of parenthood, and I vowed never to set foot in Babies R Us again. At some point, my library of "it's supposed to be this hard" tomes began collecting dust. I no longer wanted expert advice. I wanted wine.
This is not to say I haven't found books to be helpful. Tracy Hogg's "The Baby Whisperer Solves All Of Your Problems" was a life-saver in those early years. The parenting CDs by Celebrate Calm have stopped me from selling Sara to the circus on our worst days (I say "our" worst, because I have learned what part I play in tanking a perfectly good day). Dr. Daniel Peter's "Worrier To Warrior, A Guide To Conquering Your Fears" is the newest game-changer in our house. But other books were so long on theory, and so short on practical advice, that I only used them as projectiles. It doesn't matter how much you've studied; if your baby hasn't slept more than 2 hours in a row in their first 10 months of life, you will throw those books across your bedroom at 3 am. I enjoyed the different sounds they made as they bounced off my walls.
(2) I know exactly what to say to Tutors, Therapists, and Teachers.
I DO know what to say! "I am so sorry Sara crumpled up her papers and told you Math is dumb." "You'll have to excuse her, we're having a really rough month." "Thank you for giving us your best, but despite spending thousands of dollars in your care, I think she might be worse."
Oh...wait. On second thought, I have no idea what to say. I attempted to take Sara to her first Orthodontist appointment last spring, during a time I knew she'd be rested, and on a break from school. She's successfully been to the Dentist many times, so I thought I had a winner in my pocket. Sara crawled under the chair, screamed "Ortho-dinosaur" in the doctor's face, and I panicked. I called a mayday to my husband who was across the street. So not only did Sara not successfully complete the appointment, neither did I. I'm quite certain if I told those professionals I am both an RN and a Pediatric Neuroscience Researcher, they would have laughed in my face. I wouldn't have blamed them.
I have an odd habit of smiling when Sara melts down in public. SMILE EVERYONE! Just keep smiling! Nothing to see here! When her team of treatment specialists share any bad news with me, my first reaction is to look ridiculously gleeful and say things like, "Really?! Well then. Hmm. We'll have to get right on that, won't we?" I sound like I'm making a grocery list. "We're out of milk? Gracious me. I best run to the store!" Excuse me, Mrs. Fulk? I just told you Sara may never learn to add. As in, ADD NUMBERS. Did you understand what I said?
I haven't uncovered why I can't just put my head down and cry like normal people. I always cry in the car. Maybe the next time a therapist needs to give me bad news, I should invite them to tell me in my minivan. They'll have to crawl over the bags of donut holes and old coffee cups, and talk over a radio blaring The Cure, because that's how I digest bad news: with deep fried dough and grunge bands from my teenage years.
(3) I am comfortable giving my daughter medications.
This is one for the record books. I spent years, YEARS I SAY, on planes, trains, and automobiles, teaching the world's best Pediatric Mental Health providers how to use neuroscience medications safely. I presented at poster sessions. I talked with the FDA. I have been a co-author, a consultant, and a die-hard fan of helping mentally ill children find acceptance and wellness.
SO, how do you think I reacted when I was told my daughter had ADHD? One would assume I ran straight to the Pediatrician and asked for a prescription, yes? I most certainly did, 18 months later. I did what every Mother in America does when they receive this news: I tried everything else first. Diet, sleep, food dye deletion, supplements, meditation, tutoring, therapy...did I leave anything out? Yes, I did: the earthing mat. Long story, didn't hurt, not sure it helped.
I know so much about ADHD medications, I can draw their chemical structures. But when I was given Sara's first titration boxes, I ran straight through my aforementioned process: I thanked her Pediatrician with a huge grin, drove straight to Dunkin' Donuts, and cried in the parking lot. I popped in an well-worn CD, belting out "and threw her arms around my neck, I'll run away with you, I'll run away with you..." There was not a single cell in my body that didn't seize when I handed her those first pills. It...was...agonizing. Did she improve? Immensely. Was all the evidence-based research I shared with so many doctors true? Thankfully, yes. But there is a huge difference between consulting on a case study, and BEING a case study.
(4) Speaking of those experts, I'm so lucky to have their advice.
I do fondly remember the discussions I had with the experts during my career. But here's the catch: I wasn't a parent then. I heard those insights through the ears of a woman who had no clue what it was to fear for her child's future. When Sara has a tantrum, I certainly don't hear the voice of Duke University's Dean of Pediatric Psychiatry in my head. I wish I did, because he is brilliant. And I don't hear my Researcher voice, nor my Registered Nursing voice. I hear MY voice, and I'm just a Momma, wishing my precious little girl wasn't in such distress. My Momma voice is quite loud, in fact. I heard about the biological urges of Motherhood before I had children, but you can't imagine what it will be like until you hear your own child cry. The Dalai Lama could be standing next to me, telling me to stay calm, and I'd probably put my hand over his mouth, "Shush, shush now Mr. Lama. I'm her MOTHER, and YOU HAVE NO IDEA."
(5) I don't need to ask for help, and I know where to turn for assistance.
On this topic I can be blunt: if it weren't for the team around us, I have no idea where we would be. There is an ocean of difference between reading about patient cases, and actually taking care of a patients. There is another ocean which lies between caring for patients, and being one. It was most certainly Sara's first teachers who picked up on her challenges, and they were the team who pointed us in the right direction. The Educational Psychologist sent us to the Occupational Therapist who sent us to the Visual Therapist, and from there we addressed the ADHD with our Pediatrician, which helped us determine she indeed had a Learning Difference in Math. The blessings of sage advice from Sara's school have rained upon us, year after year. Sara's Math Tutor is nothing short of a miracle worker, and is the Patron Saint of Patience for kids with LDs. I am a regular in our School Psychologist's office (aka "where the kleenex is kept), and not a week goes by I don't plop down in our school's 2e Specialist's office.
I used to take great pride in my independence. "Fiercely independent" is how I might have described myself before children. And maybe just a little too full of ego? I knew THINGS, you know? My sister used to laugh and say, "If there are grades given in Parenting, Lori won't go for the A. Lori will shoot for the A+, and then she'll ask for Extra Credit." As it turns out, despite years of training and studying, I came to parenthood empty-handed. It wasn't until I learned to put trust in the Universe did I find there was an entire world able to help us. It has been humbling, and I simply didn't understand gratitude until God blessed me with Sara.
At Year #8, I'm still asking for help, and I anticipate I will never stop. This feels less like a season in my life, and more like a new way of being. Greg and I keep Sara's team in our prayers, because we now know, the raising of Sara will not occur without professional help. Or maybe more aptly stated, a Researcher cannot research his or her own child. They must instead put down the data, and choose to be present for the parenting journey that awaits them.
(6) I've taken this entire journey in stride.
Ha! Why don't we ask my therapist this question? I recall crying on her couch one day, weeping, "But I thought God wasn't supposed to give me more than I could handle?" I'll never forget her laughter as she said, "That's the most ridiculous advice people give each other. It just means they don't know what else to say. Look around you Lori! I see people with MUCH more than they can handle every single day!" I love my therapist. She helps me live inside my reality, and outside of platitudes.
I wish I could give you a formula that keeps me joyfully (desperately?) looking for answers, but I'm guessing you have your own tricks for staying sane. I wish I could say my background means I know everything will turn out OK. I don't. Unfortunately for me, I wasn't asked to assist with average cases during my career. I was called when a child set fires while hearing voices at the age of 11. So when Sara is sent to her room during a tantrum and rips her sheets off the bed, I assume any other Mother would accept this behavior as normal-fit-throwing. I, on the other hand, have nightmares about her failing out of college, wrecking her car, and turning to a life of crime. What can I say? I'm working on it. Always, always trying to improve.
So what do I say to parents when we meet for coffee, and they hand me a their child's long list of challenges? First, I tell them they are not alone, and more importantly, their child is not alone. I tell them they may have to be more open-minded than they ever thought possible. Wisdom does not come easily. It does not come quickly. It does not come without some serious sweat equity. Wisdom Comes Suddenly.
*It should be stated that these stories were shared with Sara's full consent. She may have asynchronous development, but when it comes to understanding her story, she has insight beyond her years. When she asked me if sharing these stories would help children like her? Absolutely, without question. She has simply asked that if you know her or meet her, do not mention her challenges. She sends your children her love, and messages of strength and persistence.