Making sense of this new reality is no small task. Missed expectations can be a bitch. Your vision moves one way, but reality jolts another.
Attachment to those missed expectations is a disservice. To you AND the new reality.
Disabilities don’t meet expectations. Screw expectations. Find the gifts.
Mack is not what we expected. He’s exactly what we need.
Embrace the rare. Be patient. Maintain perspective. Pay attention to NOW.
One of our methods to embrace our new reality is to talk about it. We want to draw attention to SATB2. We want to share with parents that may be on a similar path. We need to process the thoughts swirling in our heads.
In addition to firing words at the page here on DKB, we’ve also been selected to contribute to The Mighty – a great special needs blog that boasts the tag lines:
“Real People. Real Stories. We face disability, disease, and mental illness together.”
A platitude I’ve echoed in my head as I venture into uncharted territory.
My general lack of direction over the years has created ample opportunity for this self-talk.
But I’ve never qualified as an expert. Always onto the next horizon before my “10,000 hours” arrived.
Then I became a dad.
The fit was precise. Love, purpose, direction – the missing ingredients I never knew were missing.
The search for meaning (conscious or unconscious) was over. I knew my path to 10,000 hours – be the best dad I could be.
I didn’t really need to be an “expert.” I just needed passion.
When actual experts confirm that I am the expert – not by choice, but by necessity – the implications are profound.
Almost two and a half years ago, The Mrs. and I shared an update about Awesome Mack – developmental milestones had been missed and the search was on for a cause behind those missing milestones.
That search has led us down a path with developmental specialists, neurologists, geneticists, dental exams, ex-rays, MRI’s, sight tests, hearing tests, PT, OT, speech therapy, blood tests, genetic tests …and ultimately THE ANSWER.
There are commonalities among the diagnosed cases, but the sample size is small and much research is needed…assuming the medical community stays interested and funding materializes.
Nonprofit? Another topic for another time.
Common characteristics: developmental delay, speech delay, dental abnormalities, behavior abnormalities.
A common theme but a wide spectrum.
It feels cold to discuss statistics, characteristics, and cases. But that’s what experts do, and that’s the world we’ve been thrown into.
A technical mindset is a must to navigate the medical, educational and financial aspects of a lifelong march into uncharted territory. We need to work within large, established bureaucracies, and we need to fight for our needs. We need to speak their language. We need to be the expert.
But that technical mindset doesn’t change the fact that this group paving the way into uncharted territory is full of children, parents, sisters, brothers, aunts, uncles, Grandparents, and friends. People.
We’re not just cases and numbers lumped into studies. We are the experts, but we are also the emotions that lie beneath the surface. Our determination creates a suit of armor difficult to penetrate, but our love for those we fight for keeps us vulnerable.
A paradox that can be difficult to manage.
Finding the SATB2 answer has removed a small piece of hope – hope that things could all of the sudden be “normal.” Perhaps hope is overrated.
More important than hope, knowledge gives us the will to fight for what we believe in. The determination to overcome the odds. The courage to march into uncharted territory.
The strength to be the expert.
Where does Jasper Mack fall into all of this? Speechless.
Mack has a “misspelling.”
Because there are a lot of chromosomes that could be “misspelled” and there are so few cases, Mack is literally the only known case with his specific diagnosis.
MRI at 1 year showed abnormal white matter on his gray matter. MRI at 2 years showed no change. No regression – great. But why abnormal…who knows?
A few other cases show abnormal MRIs, but not all. No conclusions.
The Mack Attack is full of love. His “behavior abnormality” seems to be overly happy and friendly. Always smiling. Loves hugs.
Although he does have his breakdowns, and other experts (IE parents) have indicated that frustration seems to build with age – one theory is the lack of speech/communication aggravates…seems sensible.
Jazzy Mack has no speech. Sounds, but no words. We’ve been working on signs (and speech) for almost two years, and he is only consistent with a few. We are also in the process of being approved (add insurance to our list of expertise) for a communication device – a board with pictures for Mack to choose from.
We are told that his receptive language is higher than we may know. We believe this to be true, but with little communication, it can be hard to tell what “sinks in.”
Mackie Mack has decent gross and fine coordination, but not perfect. A lot of PT and OT has improved but not corrected this. The work continues. In the end, it could be neurological, but who knows?
The Boy eats like a champ and is almost as tall as his bro 2.5 years older, but he’s thin and does not gain weight easily.
Mack has 4-5 days of therapies per week – speech, PT, OT, and he has a full-time aide with him for three days of preschool.
Progress is being made every day. It may be slow, but it’s progress.
We may not seem like experts. We may not act like experts. But when it comes to SATB2, we are the undisputed experts. And our expertise is growing daily.
Why us? Why Mack?
Natural questions, but not worth the energy. No one has the answer, and the answer doesn’t matter.
This is our world. This is our fight. This is our Mack.
Our family is exactly the way it should be. Mack is exactly who he should be and exactly where he should be. We are stronger, better people because of Mack.
I relish the opportunity to be the expert that I need to be.
Update: Mom & Dad interview…
PS – It’s funny how life gives you what you need when you need it. Coincidence? Synchronicity?
While you wrestle with that conundrum, check out the trailer for an ABC show called Speechless. A great view of being the expert. We can relate…
I have three claims-to-fame in my 39 years on this lovely planet.
I once placed 2nd in a BMX bike race. Seven years old. My first BMX bike. A brand new birthday helmet. A big dirt track with hills and jumps. Early 80’s when BMX was super cool. And I came in 2nd…in my very first race! There were only two riders. It was also my last BMX race. But I did hang my red 2nd place ribbon on my wall.
In the 8th-grade yearbook, I was selected as “Best Dressed.” The climax of my life – and the height of my style – was only a short 25 years ago. Not too shabby.
At six, I was the youngest green belt my YMCA Karate instructor had ever encountered. I stopped shortly thereafter. A local YMCA record seemed sufficient.
There are no BMX tracks near us.
8th grade is still a long way off.
On Saturday, Little Dude captured his yellow belt in Tae Kwon Do. He’s only five.
My meaningless YMCA record has been crushed. By my prodigy.
There’s a bit of a technicality.
As “they” say, every great teacher wants their student to be better than them.
I love seeing Little Dude kicking ass and taking names. It literally warms my heart – yes, literally, as in my heart is physically warmer watching the awesomeness of my offspring.
Dad’s don’t like to be beaten. Especially by their kids. At anything.
In the generic YMCA karate of my youth, the green belt followed the white belt. In Little Dude’s TKD class, green follows yellow.
In Little Dude’s mind, Dad is still in the lead. And I’m keeping it that way.
I have the green belt (thanks Mom), and I’ll pass it down when the time is right – IE when Little Dude is 7.
Nobody ever really asked Bob Ross to do any interviews and he only gave a handful of them over the course of his life. “I never turn down requests for interviews. I’m just rarely asked”. Missed opportunity!
PBS once lost track of him until Ross called to let them know he’d moved to Orlando after the fact.
His company, Bob Ross, Inc, today is fiercely protective of their intellectual property and Bob Ross’ privacy, even in death.
Ross left school in the 9th grade to support himself as a carpenter with his father.
When he hit age 18, Ross joined the Air Force which saw him relocated from Florida to Alaska.
He disliked the job because it forced him to be “mean.”Ross left the Air Force after two decades of service, supposedly quipping that he’d never yell or raise his voice again.
Ross found inspiration after watching a show called, The Magic of Oil Painting hosted by artist, Bill Alexander.
Ross would later use an almost identical format for his show, The Joy of Painting, which greatly annoyed Alexander.
After leaving the Air Force, Ross returned to Florida in the early 1980s intent on seeking out Bill Alexander to learn the finer points of wet-on-wet painting. Alexander, who was an art teacher in his spare time, happily taught Ross everything he knew about painting, blissfully unaware that he was training his soon to be arch-nemesis.
With money tight, Ross made the bizarre decision to have his hair permed, exchanging the military crew cut he’d sported for two decades for his now iconic afro. Ross’ reasoning was that if he permed his hair, he’d save money in the long run because he’d no longer need to pay to have his hair trimmed once a week. Ross kept the ‘fro for the rest of his life, though grew to dislike it in his later years.
Exactly how Ross went from “perming his hair to save five dollars” to “being on TV” isn’t clear.
When the time came to film the first episode of The Joy of Painting, Ross made the conscious decision to speak as though he were talking to a singular viewer, giving the illusion that he was giving a private lesson.
Ross almost exclusively wore jeans and a casual shirt throughout the show’s run, a look he felt would be “current” regardless of how many years later an individual episode was aired.
Ross was never actually paid for appearing in the show and he never sold a single painting featured on it. The show was instead used as a vehicle to promote Ross’ teaching business, interest in which exploded after the show first aired. Over time, the business expanded to include Bob Ross branded brushes, paint, supplies, etc., all making Ross a millionaire.
As for his paintings, with the exception of the ones he sold to tourists during his time in Alaska, Ross gave away virtually all of them made during the show’s 403 episode run. As for the thousands of other paintings Ross made during his life, many of them were similarly given away or, when Ross became a household name, given to various charitable causes to be auctioned off.
Interested in hanging an original Bob Ross in your humble abode? Good luck.
Bob may have been charitable with his paintings, but the general public sure isn’t. Here a screen shot of the top two B. Ross paintings on Ebay – yes, that’s $20K+!!!
Just that you do the right thing. The rest doesn’t matter.
Cold or warm.
Tired or well-rested.
Despised or honored.
Dying … or busy with other assignments.Because dying, too, is one of our assignments in life. There as well: “to do what needs doing.”
But “never shot a bullet in anger.” Served just behind the front lines providing ammunition.
Four children, 10 grandchildren, 12 great-grandchildren.
Didn’t swear, smoke or drink.
The only drink he ever ordered was when he proposed to his lovely bride – Grandma, at Rockefeller Center. He ordered a whiskey sour, and “if you look there now, the full glass is still sitting there.”
Pop was an awesome dude. Cheerful. Kind. Always there with a joke and a smile. The most steadfast and consistent person I’ve ever met. If he said it, you know you could count on it.
He expected a lot out of you. But he didn’t make demands. He led with his actions, and you knew to follow suit.
He would say things like…
If it’s worth doing, it’s worth doing right.
The Marines have landed and the situation is well at hand.
The difficult we do immediately. The impossible takes a little longer.
Before giving a reading at the funeral (verse below), I said…
Pop is an amazing person. I’m honored to be up here. Gram and Pop are the example I live by every day.
Love you Gram
With the passing of Gram and Pop, I’m left with the realization that I am now responsible for carrying on that example. Their legacy.
A bit cliché, but real.
It’s easy for examples to fade away. It’s difficult to choose the right examples. And even more difficult to follow that example.
When the end is in the future, examples remain examples. Ideals. When the end arrives, those ideals must be carried on. Or fade fast.
I’ve chosen the best possible example, and now it’s my turn to lead in the same way.
Always a smile to share.
Never a bad word for anyone.
A fighter for what I believe, but fight in the most loving way.
No complaints, angry faces, or mean-spirited actions.
Family is always the top priority, but love is all inclusive.
I am who I am, on so many levels, because of Gram and Pop’s love. I am the husband, father, and person that I am because of the lessons they passed on to me.
The brilliance of it all is Gram and Pop never once “taught” me a lesson. They passed on everything I need to know to live a good life and be a good person by just being themselves.
I am their legacy.
I wrote an essay for my college application about my Grandfather. I closed with…
I hope to make my Grandfather as proud of me as I am of him.
20 years later, this is more important than ever.
The ideals that Gram and Pop lived by are in my hands. Their lessons live on through my actions.
An immediate jolt to responsibility.
I am a better person because Pop was in my life. The best example I’ve ever met.
Love you Pop. You will be missed. But your legacy is safe with me.
1 Corinthians 13
Love is patient; love is kind; love is not envious or boastful or arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice in wrongdoing, but rejoices in the truth. It bears all things, believes all things, hopes all things, endures all things. Love never ends…And now faith, hope, and love abide, these three; and the greatest of these is love.
A monotone voice drones from the worn-out speakers.
Wa wa, wa wa wa…
Miles of road ahead.
Grandpa at the wheel.
Glazed eyes of bored youth melt into the faux wood paneling of the giant Buick.
Ever been trapped by talk radio?
It’s the pits.
Podcasts are NOT your grandpa’s talk radio.
Podcasts are the next wave in media consumption. And you need to tune in. Yesterday.
Blogs are rad. Social media has some nifty perks. But podcasts are where the cool is headed.
Free format. No rules. A niche for every interest. All sorts of unknown talent.
In the past couple years podcasts have moved from fringe to mainstream. With the best yet to come.
Ditch mass media. Control your consumption.
Podcasts are time well spent.
But where to start?
The Dude’s Top 10 Podcast Recommendations
The Tim Ferriss Show: Awesome guests. Great questions. Amazing ideas to improve. The only podcast I can say I’ve listened to everyepisode.
Hardcore History: History is boring, right? No way – not with Dan Carlin leading the charge. Could be the best podcast out there. Start with the Wrath of the Khans series…you will gladly listen to 7+ hours of history!
Serial: It’s been talked about a lot. Perhaps the podcast that pushed towards the mainstream the most. Awesomeness abounds.
The Moth: Listening to amateurs tell real stories without notes is amazingly captivating – funny, sad, honest.
This American Life: Longtime public radio show turned podcast. The Moth + Serial. Real life stories with professional journalism.
Psychedelic Salon:Looking for out-there ideas? This is a great place to start. The first podcast I listened to 3+ years ago. Podcasts were definitely fringe. A grandfather sharing psychedelic ideas – mostly Terrence McKenna.
Little Dude ~ Yes you do; you know all about life!
I dig philosophy.
We’re all philosophers at heart.
Whether we realize it for not, we search for answers to life’s unanswerable questions. At some point, we realize that we don’t know…and no one does!
At that crossroads, we can throw on the blinders and slip into the cultural norms guided by powers beyond our control, or we can dig deeper and build a personal philosophy that can guide our life.
This personal structure is unique for everyone. Where to start? Who to trust? What is really important?
Luckily there have been very rad dudes (and ladies too) raising these same questions for a loooong time. Dudes like Plato, Socrates, Machiavelli, and many more.
Unfortunately, it’s easy to be swept away by the cultural stream, and for the vast majority of us, we’re not exposed to great thinkers until it’s too late.
Perhaps this is by design.
If people think less and follow more, it sure is easier to guide them.
In the end, we are all responsible for ourselves. And self-education is a primary responsibility.
However, as every parent knows, for the first 18 years, it is our responsibility to mold those young minds. And those young minds depend on us to “know all about life.”
Little Dude: Why can’t girls have boys names?
Dude: I don’t know. (It was early; I weaseled out.)
Little Dude: (Offended now) Yes you do; you know all about life!
How cool is that?! Our kids actually think we know all about life! Awesome.
Perhaps we didn’t get a great education. Or pay attention to that education. But it’s not too late. Not too late for you, and not too late for the little ones that think we have a clue. It could be years before they’re on to us!
Take the blinders off and start to build your personal philosophy. As a result, the little ones will start to build their philosophy too.
A few weeks ago I was asked to review a book called “Dead White Guys.” I’m asked to review books from time to time, and most of the time I decline without much thought.
I have enough to do/read without spending time on unsolicited books. But this one grabbed my attention. As the subtitle says, “A father, his daughter, and the great books of the western world.”
That’s got Dude written all over it. And it didn’t disappoint.
The book is written as a father passing down advice to his child. The advice just happens to be based on some of the greatest minds in history. The book is filled with compelling stories, heart-felt examples, and the loving guidance that only a parent can share with a child. It felt like me, talking to my kids, through the book.
Matt Burriesci is a talented writer that shares a great view of brilliant historic thinkers.
We all need to spend time with these philosophers. But our kids who depend on us to “know all about life” need this guidance now more than ever.
The world is a crazy place. Powers are fighting for your kids’ attention. If you don’t take it, someone/thing else will.
Build your personal philosophy, and help the kids start to build theirs. “Dead White Guys” is a great place to start.