Check out my guest blog at the Crumb Diaries.
Apologies for being a day late with the drawing. It’s been a wild weekend in regards to the house being on the market. More on that this week when I have the details.
These commenters will receive a copy of Bill Treasurer’s book “Leaders Open Doors.” Please e-mail me at email@example.com by August 2 with the address to mail the book.
If I am unable to get in touch with a winner by Aug. 2 I will select another commenter.
Note from Mixed Up Mommy: I’m pleased to have author Bill Treasurer as a guest blogger today. Proceeds from his latest book will benefit children with special needs. I also get to do a giveaway with five copies of his book! If you would like to receive a free copy, simply leave a comment on the post. I will draw five names on Saturday July 27 and contact the winners, as well as post them here. Check his book out on Amazon.
By guest blogger Bill Treasurer
For the last two decades I have taught leadership development to thousands of executives across the globe. I’ve written books on leadership and courage, and a widely used courageous leadership training program. I even did my graduate school thesis on leadership. Despite all of the wonderful leadership lessons that my clients have provided me, few people have taught me as much about leadership as my nine-year-old daughter Bina.
Bina (rhymes with Tina) has cerebral palsy. She is also profoundly deaf. Both challenges are the byproducts of a virulent staph infection she contracted at the hospital just days after she was born. Americans with disabilities make up the largest minority population in the United States. Some 54 million Americans have a disability of one form or another. And anyone who has been graced by the company of such people knows what a blessing it can be. It can also be heartbreaking. During Bina’s first year, it became clear that she was lagging behind her twin brother, Alex, in significant ways. Alex rolled over. Bina didn’t. Alex crawled. Bina didn’t. Alex responded to our baby talk. Bina didn’t. Alex received adoring smiles from strangers. Bina didn’t.
The first leadership lesson Bina taught me happened early on. At first, all I could focus on was Bina’s disabilities, which caused me a lot of anger. I’d think, “Why did this happen to her? Who caused this?” and “Why can’t she do the things her brother can do?” Then, just before she turned two, a friend of mine wisely suggested that I start focusing on Bina’s abilities, not her disabilities. When I heeded my friend’s advice, Bina started progressing much more rapidly. In some strange way, by focusing on her disabilities I had become a block to Bina’s progress. I had pigeonholed Bina as a “handicapped” person and had started treating her as such, often by babying her. Once I started focusing on her abilities, my parenting shifted from taking “care” of her, to fostering her strengths by encouraging her self-reliance. Leadership lesson #1: People go farther when you focus on what they can do, not what they can’t.
The next leadership lesson came when Bina was four. At that point, Bina was still in a stroller because she couldn’t walk. Her brother Alex, on the other hand, was turning into a rambunctious little Ninja gymnast. To encourage his aerial hijinks we set up a trampoline in our backyard. I’d teach Alex trampoline moves while Bina watched from the sidelines. At the end of our little practice sessions I’d always make time for Bina too, holding her little hands and bouncing up and down.
One day, just to see what would happen, I sat behind Bina, stood her upright, steadied her hips, and let go of her hands. Then Bina did something she never had done before: She took three full steps. On the hard floor, Bina was never confident enough to do this. Kids with cerebral palsy fall down a lot, and Bina was no different. She had fallen off enough chairs to know that the hard floor wasn’t her friend. So watching Bina take three teetering steps was hugely thrilling. On her fourth step she fell to the mat and giggled as my wife, Shannon, and I cheered wildly
Recognizing that we were onto something, Shannon and I began to set aside time each day to walk with Bina on the trampoline. Before long, three steps turned to five steps, and five turned into ten. Then we set up a long runner of matted cushion on our back deck, figuring it would help her make the transition from the spongy trampoline surface to the hardwood floor. Drawing on her trampoline successes, Bina cautiously stepped out on the runner. Soon she was taking more steps on the deck than she was able to on the trampoline. It was all terrifically encouraging and inspiring. By setting up our backyard trampoline, we created a safe way for Bina to do something that she had previously felt was too unsafe to do. Walking, formerly a frightening and potentially injuring experience, now had become fun. Notice that the action we wanted Bina to take (walking) hadn’t changed. What had changed was the consequence (and only temporarily). The spongy trampoline surface was far more forgiving than our hardwood floors. When we surrounded the same action with safer consequences, Bina became much more willing to take a risk. Leadership lesson #2: If you want people to take more risks, make failure safe and success possible.
The third leadership lesson involves communication. Bina has had a cochlear implant since she was two-and-a-half. The technology has been a wonderful blessing in that it has allowed Bina to hear and acquire language. Along with intensive speech therapy, the cochlear implant has made communication with Bina possible. Still, Bina talks differently than most people. Her deafness impacts her intonations and her cerebral palsy affects the use of her tongue and mouth. So communicating with Bina takes a lot more patience and listening. It is not uncommon for her to have to say something a few times before you fully understand what she’s saying.
Few things provoke other people’s judgment than how one communicates. Northerners make judgments about southerners due to dialectic differences in pace (northerners tend to speak faster than southerners). In the same way, it’s common for people to make judgments about the intellect of people with special needs because they often talk differently. This is especially true for people who have cerebral palsy whose faces often contort and shift when they talk. But when you take the time to listen deeply to a person with special needs you get to know their preferences and perspectives. Over time I’ve learned that communication works best when I communicate with Bina on her terms, not mine. This requires adjusting to her cadence, intonation, pace, and unique dialect. Communicating with Bina on her terms has allowed me to discover how wonderful, caring, and beautiful Bina is, and it has deepened our connection to one another. Leadership lesson #3: Effective communication results from patience, listening, and setting aside your own communication preferences.
Being Bina’s dad has been one of the greatest joys, and greatest educations, of my life. I’ve learned powerful lessons about dignity, unconditional love, prejudice, and leadership. You couldn’t pay me all the money in the world to take Bina away from me, though I would give you everything I own for her to not have had to suffer through her challenges. In the end, though, my job is to love Bina as much as I can love her to help her go as far as she can go. To me, that’s the ultimate job of a parent…and a leader.
Bill Treasurer is the author of Leaders Open Doors, which focuses on the responsibility that leaders have for creating opportunities that cause people to grow. The book is carrying out its own message: 100% of the royalties are being donated to programs that support children with special needs. Learn more at www.leadersopendoors.com.
Bill is also the author of Courage Goes to Work, an international bestselling book that introduces the concept of courage-building. He is also the author of Courageous Leadership: A Program for Using Courage to Transform the Workplace, an off-the-shelf training toolkit that organizations use to build workplace courage. Bill has led courage-building workshops for, among others, NASA, Accenture, CNN, PNC Bank, SPANX, Hugo Boss, Saks Fifth Avenue, and the US Department of Veterans Affairs. Contact Bill at firstname.lastname@example.org, or on Twitter at @btreasurer (#leadsimple).
I met Giovana in eighth grade in 1993. She thought I was a weirdo. I thought she had big poofy hair. Just kidding. That was normal then. I was gonna bite the bullet and post a picture from that year for the sake of humor, but there are apparently none with just the two of us, and it seems wrong to bring down innocent people.
So here are some from high school.
Then came came college.
A few years later this guy shows up and is all, “See this sweet ‘stache I’m rocking? I’m gonna marry your friend.” I had been out of the country for their dating relationship. I tried to hire a hit man but he was too expensive. Fortunately, I decided I like Damien and didn’t have to kill him. Though we did ixnay the mustache.
Then they put up with my whining for a few years about how I’d never get married, until…
They had been wanting a baby for a long time. But sometimes life is a pain in the ass. After years of waiting, they got the call.
And now Connor has a new friend.
Welcome home, David!
It’s a strange sensation to watch your child develop in slow motion. Every new skill gained is not just exciting, but so…noticeable. Some parents say things like, “Oh, he just suddenly started crawling” or “she seemed to walk overnight.” Not in our world. It’s kind of fascinating, really, when it gets broken down into bits and pieces — often with the help of a physical therapist trying to explain it to you. How many parents actually notice the first time their kid reflexively throws their hands behind them so they don’t fall backwards from sitting, and even if they do, do they realize how significant that is? Connor isn’t quite crawling, but I’m watching each step along the way. Every new positioning of his legs and body. If you have a typically developing child, did you give it much thought the first time they got into a side sitting position? Because that’s a really big deal, too. What about when they were sitting and playing and pivoted in another direction? The first time they passed an object from one hand to another? Used the pincer grasp? Banged two objects together? Maybe you were excited by the first mamama, but were you just as excited when you finally heard bababa?
The last several weeks have been incredible. Connor used to hit milestones with a lot of lag time in between. And when it seemed like he was about to hit one, it would take forever to actually happen. There was that quick head lift that made me think he was on the verge of having head control, but that took several more weeks. There was the first time not completely flopping over from sitting, but it was months before he mastered it. But we have had a lot of firsts recently, followed by quick mastery. He threw his hands forward to catch himself from falling forward in PT, he rolled to his belly finally (that was just a stubborn thing-he actually rolled the other way on time) and realized rolling could actually serve the purpose of locomotion, he became mobile, he started using consonants, he can pull himself into a sitting position without help, his interest in what is going on around him has quadrupled and he fell in love with Elmo. He started comfortably sitting in the grocery store cart and observably recognizing certain words.
He’s doing really well despite an uptick in recent seizure activity. But he’s also had recent med changes in the weaning of vigabatrin and adding trileptal, so I’m remaining optimistic about that improving. They don’t seems to have a lingering affect, though they have morphed in appearance the last few days. He was having what were suspected to be complex partials in which his body would clench up and he’d stare off to the side unaware. Now they start with him losing awareness briefly and he clenches up, but then he regains awareness and is responsive while his mouth twitches like crazy. It’s like a weird mix of complex partial and simple partial. But what they they truly are remains to be seen.
And the remolding helmet only needs to be worn at night now now!
Through it all, he’s happy and giggly. Well, except for the week from hell with those two teeth coming in. They still aren’t out, but he seems to have settled down. I will go in and get them myself if they start up with him again. I don’t do no sleep.
Connor will now have to learn that he can’t head butt everything in sight and get off scot free because we are done with the cranial remolding helmet! Well, mostly. He’s still going to wear it at night to prevent the pressure on the back of his head, but that’s really just sort of precautionary. It’s not guaranteed to make a difference. At any rate, Connor had a scan this morning and the changes were very minor from the last scan. Most of the correction took place in the first few weeks and it’s just not enough at this point to justify continuing treatment. While his head isn’t perfect, I think it’s vastly improved. Plus, he has so much hair, you can’t really see anything anyway. The scan diagram actually makes the change look more minimal than I think it actually is. We go back in eight weeks for an exit scan and we will be done! Imagine that, treatment finished before it ever even gets paid for by insurance…
Not sorry to see it go, but I will miss the wide eyed shock of children in public running to their moms and loudly whispering, “What is on that baby’s head?!”
Connor is going to be a nightmare when he gets fully mobile. Don’t get me wrong — I’m counting the days — but as I type he is trying to kick my laptop off my lap. No, wait, now he’s alternating kicking his legs and shaking his head back and forth as hard as he can and smacking into me with his remolding helmet. His left side is covered in fur he tore out of Emma Cat. Did I mention he’s lying in bed with me because he’s totally wired and not even close to sleeping? And he keeps trying to steal blankets and pillows from us.
The other night he was lying on the couch with me and he bit my boob. As in, made me bleed. He never breast fed because he didn’t latch in the NICU, and all I know is that he tries to remove any finger that goes near his mouth. Those extended breast feeders must be out of their minds.
He’s just a big ball of toddler energy trying to bust out of a delayed body…but it’s coming. The reckoning. He will soon destroy this house and everything in it.
I can’t wait.