Parenting in a FAS World

Featured

It’s been a long time since I posted about our life parenting two kids with FAS and one with severe trauma. Honestly, I was simply wore out. I didn’t have the energy to write about it or even think too much about it. The day to day grind of it all was more than enough. Certainly, COVID didn’t help. It was absolutely exhausting.

It’s exhausting in so many ways, often times in ways that can be very hard to put words to. Some of the exhaustion is how few people can actually relate to what it is like to try to navigate parenting in this extreme environment. I don’t blame them, it’s very difficult to understand or relate if you haven’t experienced the things someone else has experienced. I don’t know anyone that has a child that is a flight risk at all times (many times for reasons that aren’t obvious), or a child that has made numerous death threats to other family members (how do you process that?), or a child that may simply prefer not to be part of this family.

The other challenging part we face is it isn’t easy to receive help. That may not make sense to most people that read this. We can’t simply get a babysitter for an hour or two. Often, we can’t even have family help us unless the situation is just right. We are so appreciative of all the help we do get, but the amount of effort that goes into planning and communicating is overwhelming. Not to mention watching and waiting for the text message or phone call to come that asks us to get home because something is up. I totally get why it is hard to understand why the stars must be aligned for things to go well. I know it’s also hard to understand why the kids don’t always enjoy normal kid activities and many times if things aren’t perfect or something changes unexpectedly things get off the rails immediately. I feel bad about this for those that help us. It probably doesn’t feel good and I’m sure is confusing.

I’m not a musical person, but I love music. That’s not totally accurate, I love lyrics. I’m sure I’m not alone in loving lyrics I can relate to. Lyrics that help to make sense of life and help you hold on to some hope that you are not alone in whatever you are feeling. I heard a song the other day that I’ve listened to hundreds of times before. But on this day, it spoke to me in a different way. I felt as if it was speaking about all the things my wife and I feel raising our three adopted, brain damaged, and traumatized kids.

I’ve loved the Counting Crows for what must be 25 years now. I love the lyrics that make up their songs. The song that spoke to me the other day is called “Mrs. Potter’s Lullaby”. The song is like one big metaphor for the life we as parents live with these challenging kids. I bet it will ring true for those in a similar situation and hopefully will help shed light on what it is like to raise challenging kids for everyone else.

“Well, I am an idiot walking a tightrope of fortune and fame. I am an acrobat swinging trapezes through circles of flame”.

This parenting life is a tightrope. One that I have not walked in any other part of my life. You end up humbled most days by just how little you know. How important the brain is and how so much of who we are develops before we can even talk. Sadly, there is no fortune and fame to be found in this life. All there are is small wins that most wouldn’t recognize as wins at all. These tiny wins are so hard to hold onto. Many days feel like we are doing something extremely dangerous, we are holding on for dear life, and there is no safety net. You can’t train for this experience.

“If you’ve never stared off in the distance, then your life is a shame
And though I’ll never forget your face,
sometimes I can’t remember my name”
.

Personally, I have to be very careful not to stare off I to the distance. I can’t give too much thought to the reality of the situation, the near future, the long-term future, what could have been or what should have been. Those are dangerous thoughts. Sometimes when tough days stack up on one another it is hard to remember what normal is. Sometimes it can be hard to remember who I am without the stress in my life. The effort never stops.

“And there is always one last light to turn out and one last bell to ring; And the last one out of the circus has to lock up everything; Or the elephants will get out and forget to remember what you said“.

These lines sum of nicely how dialed in you have to be as a parent to these kids – at all times! If you let your guard down all hell is bound to break loose. Plan for the worst and pray for something better than that. Yes, you pray for it, you don’t expect something better because you will be let down. It takes a long time to break a parent of that hope. The hope that your child will make a better choice next time or the time after that. Those are hard realizations that I think most parents don’t have to experience. You can read about some of those experiences in my past posts (I’ll link them below). I could write several more blog posts about crazy things that have happened just since we moved into a new house several months ago. We’ve made a million mistakes and try our best to learn from them all.

Our new house has more space. We were in desperate need of more space. We needed bedrooms and we needed bathrooms. We needed more space! We were very fortunate to find a house and location that fits us very well. Nothing is perfect though and we found we still didn’t get it totally right. We ended up changing around bedrooms once already to keep the peace. Every time we think we have something figured out we are brought back to reality very quickly. I think sometimes we think age (11, almost 11 and 9) will make things easier. It doesn’t. And unfortunately, I think it will continue to make it harder.

Speaking of locking the doors, we lock everything. We have locked all kinds of things. Doors, cabinets, our freezer and on and on. We lock up cabinets that we keep food in. We lock up access to certain bedrooms, my office and the basement. The basement is an important one because if we don’t thing go missing really fast and you are bound to find a kid down there watching TV all night. There isn’t much in our house that doesn’t require a password. Sometimes it can feel like a prison, but it keeps things under control and is an easy trade off considering what the alternative looks like.

All the razor perceptions that cut just a little too deep
Hey I can bleed as well as anyone, but I need someone to help me sleep.

I’m all over the place on the lines above. Those razor perceptions or judgements that go along with raising any kids, but especially challenging kids is an interesting space to live in. My personality generally lends itself to not caring about anyone’s opinions. Sometimes though it gets to me and I want to sit people down and explain everything we live with. Give me several hours to bend your ear before suggesting things seem to be getting better or we should try this or that. I understand that comments and suggestions are well intended, but they miss the mark every single time.

“So I throw my hand into the air and it swims in the beams; It’s just a brief interruption of the swirling dust sparkle jet stream; Well, I know I don’t know you and you’re probably not what you seem”.

We carry sadness of realizing we will never really know who our kids were supposed to be. They were taken from us before they were born, never to return. We will do everything we can to help them live their best lives, but these lives aren’t what they should have been. They shouldn’t be this hard. They deserved better.

“When the last king of Hollywood shatters his glass on the floor; And orders another. well, I wonder what he did that for“.

I think my wife and I feel these lines most often. The “is this real” moment. These lines represent the uncertainty we live with every day. The 0-100 escalations in a blink of an eye. The unusual and unpredictable behavior. The stories we could tell. The sadness we’ve felt. It can be a lot.

That’s when I know that I have to get out cause; I have been there before”.

These two lines are exactly who my wife and I are not. We won’t get out, we don’t want to get out, but we most certainly have been here many times before and will be here many times again. We will continue to show up. We will continue to mess this up. We will pick ourselves up. There is no other way. We will be better than yesterday!

You can see a million miles tonight
But you can’t get very far

These two lines are really sad. I think parents with challenging kids face these thoughts. Knowing the whole world is out there to explore, but you can’t leave the house (sometimes even for simple things). Knowing what they will never be able to do or experience. Knowing you will never have that full relationship with them. It’s especially hard when you have neurotypical kids and you see all the promise, the complete lack of any limitations on them.

You can never escape, you can only move south down the coast

I went through the song as it was written, except for the line above. This line is near the beginning, but I want to use it to close. It explains very well what really good parents of these challenging kids do. Good parents are those that try, those that do not give up even with the odds are against you. They are the ones that realize that they have to move with their kids. They realize they need to meet them where they are today and that tomorrow they probably aren’t in that same place. It’s not easy, sometimes they are hard to find. Sometimes they don’t want to be found. There are many potholes, traffic jams and accidents along the way, but you keep moving. You have to find what works and more importantly in this world find what doesn’t. You have to accommodate as best you can, but more than anything you have to keep moving. Isn’t that what life is all about anyway?

https://yougotnocontrol.com/2020/01/26/this-is-fas-part-ii/

https://yougotnocontrol.com/2020/02/02/this-is-fas/

https://yougotnocontrol.com/2020/02/11/fas-the-chase/

Who are you voting for?

I don’t care who you are voting for, but thought it was a catchy title for this post. It’s election season after all. I do care about your why though. Have you thought about the reasons you vote for a specific candidate?

We are less than a month away from our general election. I can’t wait for that day. Social media will be lit up with pictures of “I Voted 2020” stickers plastered front and center on t-shirts. I’m trying really hard not to go down a rabbit hole on discussing why so many feel compelled to tell the world they voted. Moving on.

So why do you vote the way you do? It may be very simple. You identify as a Democrat, so you vote Democrat. You believe the Democratic party shares your beliefs as it relates to policy issues. The assumption here is that you understand what the party believes in and the individuals elected will continue to push those policies forward.

It could be far more complex though. Maybe your values don’t align closely enough with a single party. What do you do then? It seems like most Americans would fall into this camp. We certainly have a strong tendency in this country to align with a tribe, but I find it hard to believe that most of us can find a tribe with something as complex as politics. Politics span the idea continuum – from the economy to healthcare to foreign policy and everything in between. I certainly fall into the camp of neither party aligning closely enough with the majority of the policies I believe in. That feels ok to me, it feels right. It feels right because most things in life are grey, so why would something as complex as politics be different? There is very little that is truly black and white. I’d argue that if you think something is black and white then you haven’t thought hard enough on it.

I’m sorry, but this post isn’t going to enlighten you or help you make any political decisions. This post is meant to shed light (again) on the environment we live in that makes gathering information and making educated decisions very difficult. This post is meant to drive you to want to gather as much information as possible before you vote. To think critically about why you are choosing candidate A versus candidate B.

Election season is in full go mode. We witnessed an amazing debate last week (yes that is sarcasm). I think it is intellectually dishonest to call these things debates anyway. Even when they are under control, they are not structured in a way where we can actually learn anything about what a candidate thinks. They are meant to provide sound bites for the various news outlets.

We are being flooded with information in every way imaginable. We get text messages and phone calls. We see political yard signs and billboards. Seemingly every website you go to will have a political ad. TV ads are never ending. And the direct mail, all that mail that I feel obligated to glance at out of respect for the dead trees. These two old parties (not Trump and Biden, but the Republicans and Democrats) are relentless. I think it is important to take a step back and realize what is really behind these presidential candidates, as well as everyone else running.

I am oversimplifying this, but at the end of the day these two parties are nothing more than two large businesses. They have significant revenues, significant expenses, and hundreds of people working for them.

The Democrats and Republicans each have three major party committees. Each committee is designed to focus on a specific a specific office – President, Senate and House. These parties have raised a combined $1.586 billion dollars during the 2020 election cycle (per ballotpedia.org). Let’s say that again, $1.586 billion dollars raised in about 20 months. By all measures, these organizations are mid-size businesses at a minimum. Businesses have a mission and in this case the mission is to influence or win your vote – by all means necessary.

Ultimately these organizations are nothing more than large media companies – pushing an agenda. They don’t do it with meaningful information. They do it with catching taglines, very loose uses of the “truth”, and anything else they can think of that will catch your attention. Their incentives are simple – to gain power. What is more important than power? That is certainly a meaningful motivator.

If you aren’t affiliated with a party or you are an uninformed voter, you must be aware of their motivations. If you aren’t aware, you can easily get sucked into meaningless information that is barely at the level of gossip. If you are affiliated with a party, then this information will always hit the mark with you.

I know it is an uphill battle. Educating yourself in today’s environment is a ton of work. Everyone is seemingly against us. The political parties, social media company’s algorithms, untrustworthy news organizations, and on and on and on.

You must take this on though. Do the work, put in the effort. Not just on the candidates, but on yourself as well. Decide what topics and policies are critical to you and focus on those, vote on those.

Freedom comes with great responsibility. Many say voting is one of those responsibilities, I say being an educated vote is the real responsibility. I’ll leave you with a quote. I think we have strayed very far from it and need to find the path again – quickly!

Freedom makes a huge requirement of every human being. With freedom comes responsibility. For the person who is unwilling to grow up, the person who does not want to carry his own weigh, this is a frightening prospect.

Eleanor Roosevelt

Can we fix this?

My early morning cardio sessions are always accompanied by a documentary of some kind. I’ve been making my way through “No Direction Home” on Netflix, which is mostly about Bob Dylan. I have always liked his music – I’m a sucker for meaningful lyrics. A seemingly random 30 seconds of the documentary caught my attention and I ended up watching it several times over.

“If everybody really listened to his own conscience and really acted upon what he thought was right and wrong rather than being so hopelessly passive, which I think every, just about everybody is. I think it’s probably the main disease, the passivity where we’ll listen to whatever anybody else says. It’s daddy, mommy, and schoolteacher, and Sunday schoolteacher, and president.” Joan Baez said it. I had no idea who she was before watching this documentary and honestly it doesn’t really matter who said it. It was the words that struck me.

She said those words 60 years ago and they are as true today as they probably were then. She calls into question our willingness to think critically about the issues of the day. She puts the blame squarely on the individual, essentially calling those unwilling to think for themselves lazy. It’s hard to argue with her sentiment, isn’t it?

It’s easy to blame people. It’s also very difficult. I don’t think we are actively trying to avoid thinking. I think it has become the defining characteristic of our culture today. We have gone out of our way to create enough distractions to ensure we never have a spare moment to think.

Most of us have turned ourselves into robots. We feel nothing as we spend our days taking in massive amounts of information in real time. Others have visceral reactions to every clip and to every tweet. Every clip, every tweet, every comment is life and death. The information comes to us so efficiently, so effortlessly.

In both cases it is clear there isn’t time to think. There isn’t time to question the validity of what is put in front of us. There isn’t time to question if you have looked at the story from all angles. And there certainly isn’t time to question why we think the way we do.

The point in all of this that I have been stuck on and have been stuck on at various times in my life is the idea of independent thinking. This idea can easily be expanded to a conversation about free will, but I think it is best not to go there yet.

It’s hard for me to conclude that most of us aren’t sheep, following the herd this way and that. Never taking the time to question our thoughts, ideas, and beliefs. To fix what may be the most significant problem we have in this country begins with a simple question, are the thoughts, ideas, and beliefs you hold dear even your own? You are responsible for them to be certain, but are they your own?

Over the years, this idea about what you believe and are these beliefs your own has driven me to be turned off by important ideas/groups. Specifically, religion and politics, but also something as simple as sports in this country. If mom and dad are Catholic, then I am a Catholic and my way of life is the right one. If mom and dad are Republicans, then I am a Republican and my view of politics is the right one. If mom and dad love the Tigers, Lions and Pistons, then I love them to. How can I not, I live in Michigan after all.

Allowing myself to simply ignore very important topics like religion and politics because I was turned off by how people come to believe this or that was the wrong decision. It was lazy. That decision allowed me to become disengaged and not pursue my own thoughts on very important issues. Issues that plague our country and our communities today.

We must have the courage to think critically about our beliefs and what we are willing to stand for. What really matters to you? What are you willing to expose to the world because it means that much to you? Your religion? Abortion, immigration, the environment, guns? Have you thought deeply about these things that matter so much to you? Are you willing to listen to others that may disagree with you? These are the first steps in rebuilding our country.

It is true that we live in a free country and we can do whatever we want or more likely not do anything at all. It’s also true that everything we do, or not do, has consequences and these consequences will have long lasting effects. Our actions and inactions will be passed on to the next generation. They will use what we did and didn’t do as a playbook for how they should live their lives. I wonder if we will be proud? I won’t be. I desperately want the next generation to think deeply, to find ways to a common ground on topics that are so polarizing today. It’s starts with us and it starts now.

Vote?

Yesterday was National Voter Registration Day, not like I must tell you. I am sure your social media apps were covered with messages reminding you to vote. Celebrities championing the message, doing what they can to get people registered to vote.

The message is a good one. The next message will be to. Get out and vote! Make your voice heard! And so on. They are great messages. Voting is one of the key things that make our country great.

The issue I have is those messages are only part of the message that should be pushed on every single American citizen. The missing part of the message is education. Why don’t I see and hear celebrities blasting the message, “educate yourself, the election is almost here”. What about a call for people to do some deep thinking? Shouldn’t people know what issues they care about the most and where candidates stand on those issues? Is it ok to simply vote on party lines – ever?

I am all for registering as many as possible to vote. I am all for all registered voters getting to the polls.

I am completely against pushing those two messages though without another message that focuses solely on education. It’s not clear to me that people that don’t know the candidates and don’t know the policies and ideas that define them should vote at all.

The troubling part of all of this is it takes more work than ever to truly know what the candidates stand for and even then, the winds could change. We have a responsibility to do our best to understand the men and women we put in office.

We must not forget these individuals are no better and no smarter than anyone else. They are there to do one job, serve the people and they must be held accountability to that. Oh, and those celebrities. They are just people too. No better and no smarter than anyone else. And they come with their own biases and agendas. Think for yourself. Be accountable to yourself!

Have We Always Been Lost?

I haven’t posted in five months or so. It’s taken me a lot of time to wrap my head around everything going on in this country. I’ve also had a lot going on personally (good things and challenging things). I’m slowly coming back around to wanting and needing to write. I need to make sense of what is going on and where we go from here (impact on my family and the country). I’m excited to be writing again.

I’ve started reading Seneca again (the Stoic philosopher). My perspective on his writings has evolved as I see opportunities to apply the lessons to the world at large versus the micro view I have taken historically. In the past, I would try to use the lessons, and Stoicism in general, only in my personal life. By that I mean, I tried to apply his teachings to my family life (read my early posts to get a taste of that) or to my work life. I never looked beyond those “walls” though. Not looking beyond my personal situation was short-sighted, which has become crystal clear given the current environment we are living in.

In the last six months alone, our country has come face to face with a pandemic, police brutality, racism, protests, riots, vandalism, violence, and an upcoming election between two individuals that are not inspiring and seemingly have no chance of leading this country out of the mess we find ourselves.

Each of these observations is worthy of a blog post. That thought doesn’t interest me much given how much you can read on these topics today. This brings me to why I am writing. My concern is we don’t really know what is actually going on – and it is getting worse. The amount of inaccurate information – on purpose or not – seems to be overwhelming. It makes those of us who are looking for the truth frustrated and in a difficult spot to make educated decisions. More concerning, this misinformation empowers those that have little interest in the truth. These individuals are focused only on their view of the world. They are always right and the counter argument is always wrong. In today’s highly volatile environment, this reality, and the desperate need to prove how right you really are has led to widespread destruction and at times death.

It’s not clear to me if anyone knows what they are actually fighting for. I think there was a cause early on. I think that cause has turned into a scapegoat of sorts. Radical individuals or organizations looking for a reason to create chaos and destruction in this country – to what end I don’t know. Like Winston Churchill said, “Never let a good crisis go to waste.”

Throughout the remainder of this post, I am going to quote Seneca. The quotes all come from, The Tao of Seneca, Volume 1, Letter 7 – On Crowds. This letter has helped me frame my thoughts on several very important issues plaguing this country and myself.

“Do you ask me what you should regard as especially to be
avoided? I say, crowds; for as yet you cannot trust yourself to
them with safety.
I shall admit my own weakness, at any rate; for
I never bring back home the same character that I took abroad
with me.
Something of that which I have forced to be calm within
me is disturbed; some of the foes that I have routed return again.
Just as the sick man, who has been weak for a long time, is in such
a condition that he cannot be taken out of the house without suffering a relapse, so we ourselves are affected when our souls are
recovering from a lingering disease.
To consort with the crowd is harmful; there is no person who
does not make some vice attractive to us, or stamp it upon us, or
taint us unconsciously therewith.
Certainly, the greater the mob
with which we mingle, the greater the danger.”

“Taint us unconsciously”. There is enough data today to clearly tell us that we are being led in a certain direction, based on our preferences and habits. We are the puppets. What’s crazy is the CEO’s of some of these companies are telling us this directly and we simply don’t care. Twitter CEO Jack Dorsey said, “Social-media companies are failing their users by creating echo chambers that encourage polarization”. Jeff Bezos, CEO of Amazon said, “I think social media is increasing, unfortunately, identity politics, [and] tribalism. I think the internet in its current incarnation is a confirmation bias machine,”. “If you have a going in point of view and you go do some searches, you find confirmation of your point of view. If your newsfeed is showing you things, it’s showing you things that confirm your point of view.” Isn’t this exactly what we are seeing playing out today across the country – from coast to coast?

I strongly recommend watching “The Social Dilemma” on Netflix for more information on this topic from social media insiders. Tech executives and programmers at these companies go on the record telling us all what is going on and how we are being manipulated. There is no incentive for these companies to give us a balanced look at a certain topic – that isn’t going to move their needle.

“But nothing is so damaging to good character as the habit of
lounging at the games; for then it is that vice steals subtly upon
one through the avenue of pleasure.
What do you think I mean? I mean that I come home more
greedy, more ambitious, more voluptuous, and even more cruel
and inhuman, because I have been among human beings.
By
chance I attended a mid-day exhibition, expecting some fun, wit,
and relaxation—an exhibition at which men’s eyes have respite
from the slaughter of their fellow-men. But it was quite the
reverse. The previous combats were the essence of compassion;
but now all the trifling is put aside and it is pure murder. The
men have no defensive armour. They are exposed to blows at all
points, and no one ever strikes in vain.
Many persons prefer this programme to the usual pairs and
to the bouts “by request.” Of course they do; there is no helmet
or shield to deflect the weapon. What is the need of defensive
armour, or of skill? All these mean delaying death. In the morning
they throw men to the lions and the bears; at noon, they throw
them to the spectators. The spectators demand that the slayer
shall face the man who is to slay him in his turn; and they always
reserve the latest conqueror for another butchering. The outcome
of every fight is death, and the means are fire and sword. This sort
of thing goes on while the arena is empty.
You may retort: “But he was a highway robber; he killed a man!”
And what of it? Granted that, as a murderer, he deserved this
punishment, what crime have you committed, poor fellow, that
you should deserve to sit and see this show? In the morning they
cried “Kill him! Lash him! Burn him! Why does he meet the
sword in so cowardly a way? Why does he strike so feebly? Why
doesn’t he die game? Whip him to meet his wounds! Let them
receive blow for blow, with chests bare and exposed to the stroke!”
And when the games stop for the intermission, they announce:
“A little throatcutting in the meantime, so that there may still be
something going on!”

This last line rings true doesn’t it? We have a constant need to know what is going on in the world. The phone dinged or vibrated, I have to look. Maybe there are message or notifications that I cannot miss. If I have to go to the bathroom, my phone is coming with me. Exercising, traveling, eating, I can’t be without my phone. I need to know what the latest news is. It seems we are more and more incapable of existing in our own head space.

I think the question that needs to be asked is a simple one, why? Why do I need to look at my phone and those apps all the time? What am I getting out of it? Am I actually learning anything? Is there any real value being provided by these apps? I don’t have the answers, but I am asking myself these questions.

“Much harm is done by a single case of indulgence or greed;
the familiar friend, if he be luxurious, weakens and softens
us imperceptibly; the neighbour, if he be rich, rouses our
covetousness; the companion, if he be slanderous, rubs off some
of his rust upon us, even though we be spotless and sincere. What
then do you think the effect will be on character, when the world
at large assaults it!
You must either imitate or loathe the world.”

This is where I truly get concerned. Our reliance on our smart phones and computers expose us to the entire world. We know that other countries are taking shots at us. They are poking holes in our character and at the moral fabric of the country. We know about Russia and China intentionally interfering with our elections. We would be naive to think it stops there. The crazy thing is even with this knowledge we don’t make any changes to our habits. We don’t delete Facebook, Twitter, and Instagram. We can’t see this interference directly, so we simply go on with our day. I am not sure we would change our habits even if something happened directly to us. Sounds like an addiction doesn’t it? You know it’s bad for you, but you can’t stop yourself.

Our country seems to be headed for some disastrous event or events if we continue on this path. The only solution that seems to have any chance of success is a large group of people coming together and talking openly and honestly about the issues that plague their communities and their families. Clearly there are polarizing topics that will never be “settled”, but there is no reason compromise and moderation cannot be our path to a peaceful and developing society. We clearly aren’t on that path now. Reading Seneca makes me wonder how much we have really evolved. He died in 65 AD and his words seem to speak directly to our world today.

3 Pillars

This post has been on my mind for a couple years now. It looked a lot different back then compared to what I am about to write.

UBU (You Be You) was an idea that my oldest daughter and I came up with several years ago. It was born from her desire to help people feel confident in being themselves and my desire to encourage her to never stop being the fiercely independent girl (young woman now I guess 😢) that she is. I never want her to lose the free spirit she has in her. UBU would come up from time to time in passing, but really not much more than her asking me when will we do something with this idea. Can we put it on a shirt or do something “cool” like that? Nothing much happened until a couple months ago when I found this really cool local small business that prints designs on all kinds of products. They do it inexpensively and without having to order dozens of products to make it worth you while. I surprised my daughter with a UBU hat recently. It’s “real” now! Kidding aside, although small and insignificant, it was kind of cool to see our idea on a product.

UBU has really taken on a life of it’s own in my mind. A confluence of thoughts banging around in my head have brought it into focus. It’s also expanded rapidly and grew into something much more. Let me explain what is going on in my head.

First, the very clear racial divide our nation faces was brought center stage by the recent killings of George Floyd, Breonna Taylor, and Rayshard Brooks. These deaths and all the other information coming out about how difficult it is to live in this country if your skin isn’t white is overwhelming. It also took our simple idea of UBU and turned it on it’s head. For some, UBU is simply not possible, not without the threat of violence and death on your mind. Story after story about black people not feeling comfortable going for a run or taking a walk in their neighborhood sadden me. Reading a story about a black man that purposely doesn’t walk in his own neighborhood without his daughter because if she is by his side then he is “ok” was sickening. So much for UBU.

It is hard to comprehend that in this country, in 2020, we have large groups of people that are disadvantaged because of the color of their skin. It embarrasses me and I feel ashamed. Obviously this is a very complex topic and I am doing my best to work through as much information as I can. I want to figure out how best I can help to change this crisis our country faces. For now, I will read and I will listen.

While our country is playing chicken with what feels like a race war, we’ve had challenges inside our own home with our three adopted kids. I’ve written about them before. I’ve written about the immense challenges they face and the challenges we face trying to parent them. I won’t repeat those stories, but can say I am certain there is nothing harder I will ever do in my life than try to navigate this very complex world of fetal alcohol syndrome and significant trauma. Fortunately, I haven’t had any stories like my daughter yelling “stranger danger” as I try to get her back in our car recently. Unfortunately, what I am about to write is really much more difficult.

I’ve come to the realization that I have to be a much better dad to my adopted kids, to my brain damaged adopted kids. These kids have damaged brains because of what they were exposed to before and after they were born. We won’t ever fully understand the extent of the damage, but we are starting to see some of it play out as we watch our two little biological girls grow and develop very quickly on one end of the age spectrum and my two older biological kids thrive at the other end of the age spectrum.

These kids can be really, really hard sometimes or maybe most of the time. Their behaviors are extremely challenging and very difficult to understand. We go out of our way to make accommodations and do what we can to keep the peace for as many minutes of the day as possible. These accommodations help, but they can’t fix the damage that was done.

They are good kids though. I know their behaviors are not intentional. Unfortunately that doesn’t always stick in my head as the daily grind gets the better of me. As time has gone on and they have gotten older, it is becoming clear they are lagging behind their peers as it relates to school and play. This hasn’t been easy for me to adjust to. I’ve been very fortunate. My older biological kids are “easy”. They do very well at most things. I’m able to push them and challenge them to be better because I know they understand why I’m doing it and I know what they are capable of. I can already see it in my 2.5-year-old too. I haven’t adjusted to the fact that our soon to be 11-year-olds’ play similar to my 2.5-year-old. It’s even harder for me to comprehend that my almost 9-year-old’s play hasn’t evolved in the entire time I’ve known him (5+ years). His play consists of banging two legos or blocks together for hours on end, using very few words. My favorite (sarcasm) is at about 8PM every night he begins pounding on the floor directly about our living room for hours. It can be a lot.

So where does UBU fit in? I realized these kids can’t be themselves without feeling judged either. Judged by strangers, judged by their peers, and although it’s painful to say, judged by me. It may not be verbal, but I know I do it. I know my facial expressions tell them I am trying to figure out why they are acting a certain way when I should simply be ok with who they are and where they are today.

As I continue to look inward in 2020, I realize our UBU idea is a very good one. It is a meaningful one, even if I am the only one that gets something from it. UBU should be practiced and said throughout the day. It is my mantra, I say it often now. Instead of cracking that innocent joke when we see a guy driving by himself in a car with a mask on, I smile and say UBU to myself and my kids. This change in how I think has been a positive one for me. The innocent jokes were never meant to hurt or harm anyone, but I think they were harming my mind. The bottom line is if you aren’t hurting anyone, including yourself, then UBU – always!

As time has gone on something else was taking shape too. The guiding principles I want to live my life by were becoming clear. UBU took me to what I call my 3 Pillars. The name is not creative and I spent no time coming up with it, but regardless let me lay it out for you.

The 3 Pillars help guide me towards living my very best life. They are Accountability, Courage, and Effort (A.C.E). These pillars are surrounded by the Koru. The Koru is a spiral shape based on the appearance of a new unfurling silver fern frond. It symbolizes new life, growth, strength and peace.

Let me define each of the pillars.

Accountability is defined as “answerable for actions or decisions”. As it relates to my life, I break it down further into what I am fully responsible for:

  • Everything I do and say
  • My relationships
  • The roles I’ve chosen to take on

Courage is defined as “the ability to do something that frightens oneself”. This means two very important things to me:

  • Courage to live your authentic life, free of concern of the crowd – I am not a sheep
  • Courage to evolve based on constantly learning and questioning my thoughts, opinions, and actions

Effort is defined as “a vigorous or determined attempt”. This one seems like it is the easiest, but I think in today’s world it may be the most difficult.

  • I will show up and I will do something
  • I will make forward progress, without concern for how much or how little I gain each day

As I explained above, the Koru is a symbol for new life, growth, strength, and peace. I think the Koru is a perfect symbol for how I choose to live my life. I will continuously grow. It won’t be easy and it will take time, but I will continue to grow.

How will I apply what I wrote above? As it relates to the world and specifically the injustices the black community continues to face, I’ll listen. I’ll do my very best to understand. I’ll take what I hear and will find a way to make a positive impact. Maybe that is as simple as educating my kids or maybe there is a larger role for me to play. Regardless I’ll put in the effort necessary to make a difference.

As it relates to my family, I will find a way to meet the very unique needs of my adopted kids. I’ll meet them where they are without judgment. I’ll support all of my kids in whatever way is best for each of them. And when I screw it up, I will try again.

We are living through unprecedented times in our country’s history. Perhaps this is the moment my generation will have that goes down in history. When I look back or talk to my grand kids about this time I want to do so proudly. I want to be able to say I showed up and I tried. I was courageous because I asked myself the hard questions and was willing to answer them honestly. I put away my preconceived notions about many things and began to look at things through the lens of those living it. I want my kids to know I was strong enough to evolve and get better every day.

Father’s day is several days away and on my mind. When my kids think about me, I want them to remember me as someone that always showed up. I want them to remember their dad was far from perfect, but never ever stopped trying to be better. I want them to know I was willing to challenge everything and everyone on my quest to live an authentic life. I want them to know their dad was not a sheep. More than anything though, I want them to know that regardless of what was going on at the time, their dad always had their back and always loved them!

Why do I write this? I write it for my kids. I want them to be able to look back when they are adults, parents, employees/employers and know it’s ok not to have the world figured out. That things can be hard or they can be easy. That ultimately if you have your heart in the right place everything will work out.

#fitlife #fitness #fitnessmotivation #chooseeffort #ivegot2more #accountability #noexcuses #betterthanyesterday #endure #grind #7kids #fetalalcoholsyndrome #blendedfamily #trauma #ubu #coronavirus #opportunity #perspective # lifeskills #responsibility #budgeting # hardwork #sacrifice #portioncontrol #fairness #selfsufficient #covid19 #courage #effort #koru

What the f@&$ is going on?

I think my wife and I ponder this question more than any other these days. What the f@&$ is going on?

Should we fear Covid-19? Are the steps the country, and more specifically the state, is taking reasonable considering the circumstances? What does this look like in a month, in three months, in a year?

I’m rarely short on opinions, but in this case I really don’t know what to think. There are very strong opinions on both sides of this thing. One group is adamant we need to stay at home and help curb this virus to prevent many more from getting sick or dying. The other group believes we need to open up the economy in order to save jobs and ensure we don’t find ourselves in an extended recession or worse. It certainly didn’t take long for Covid-19 to become a polarizing topic.

When big things are happening in the world I usually start by thinking about the economy (the money). No one messes with the money, unless there is a real good reason, right? In this case, leaders of virtually all the major powers have shut their countries down for some period of time. India has been shut down for three weeks and just extended it two more. For context, that is over a billion people on lock down. It’s very hard to comprehend a lackdown of that scale.

The decisions being made by these countries will likely lead to a global recession and massive unemployment. It’s difficult to predict how bad this will get and how long it will take to move past the damage that has been done so far. The money is telling me that a lot of people with a lot to lose believe this is a real threat.

The most common mainstream debate I have seen is how Covid-19 compares to the flu. The same flu that kills about 50,000 people a year. Yes 50,000 people. That number surprised me. Are we just so used to the flu that we are numb to the death toll. I guess that is how we treat automobile deaths too.

With the flu we never lock down a city, state or the country. Why now? Is this really that different? It seems this virus kills those already vulnerable. I’m pretty sure the flu does the same thing. Most data points seem to indicate that Covid-19 is far more contagious, more damaging to your overall health, and more deadly than the flu. Unfortunately they are just data points now and not fact. What we do know is we are precise. We don’t know how many people have been infected, which means we cannot calculate an accurate mortality rate or understand the severity of this virus. It seems like this would be the same situation as the flu as well.

The fact that our healthcare system was overwhelmed so quickly seems to be a telling data point, but by no means does it tell the whole story. My county is fine. The hospitals here aren’t overrun and our overall cases have been and continue to be low. There are also no signs of the numbers changing in a meaningful way anytime soon.

I’ve gone along for the ride so far with little complaint. This virus is something I know nothing about (I am not a medical professional), and as such I felt compelled to rely on their suggestions during this time. That is made much easier for me because my day to day hasn’t really changed. My family situation generally keeps us home bound unless we are very deliberate about going out. School being cancelled for the rest of the year is the only real material change that has impacted us. That is only due to the fact that two of our kids have special needs and struggle a ton with school. Honestly the bigger issue is they also struggle with play. Without constant guidance, ideas and oversight they don’t do much. In a house with nine people that can be an issue.

The governor recently extended our stay at home order and added additional restrictions. This caught my attention. Nothing in particular related to the order or the restrictions, but the simple fact that we were being asked to stay in another two weeks. And more than that, that we were going to continue to comply with this without much discussion or any idea when this may end. It’s certainly got the attention of many in the state – both positive and negative. Of course it immediately turns into a political conversation or evolves into a discussion around the fact we have a woman governor. How quickly these things devolve is embarrassing for our state and our culture in general.

No, every republican doesn’t want to open up the economy tomorrow with an intent on making money while people die in hallways of hospitals. No, every Democrat doesn’t want to stay inside forever while the economy comes crashing down waiting for the government to ride in and save them. And the fact our governor is a woman has nothing to do with anything.

Why can’t we have meaningful discussions on important topics without the social media echo chamber in our minds encouraging us to regurgitate the latest crap we read posted from our favorite like-minded “friends”. Why aren’t we willing to spend real time thinking about a topic, from all angles, before putting our opinion out in the world.

I hate when people speak in absolutes, but I’ll break my own rule right now. I promise, you don’t know if you are right. You can’t be sure because you don’t have all the data and facts in front of you. This simple fact should be enough to give you pause before you spew what you believe to be the gospel on this or any other topic. There is nothing wrong with a strong opinion, but you need to keep an open mind and be willing to see all sides of an issue. Be intellectually honest.

I think we can all agree we need the economy to open back up as soon as possible, but we need to do so in a way that minimizes the risk of harming the health of this country. I would hope we can all agree too that this is a most complex problem we face and no one person or one group is going to solve it. Can we start the conversation there?

All of this does spark some thought for me around personal freedom. Very few have lived through anything like this, so there really isn’t a playbook to follow. That goes for our politicians as well. They certainly didn’t sign up for this and aren’t qualified to handle it. That is not a knock on them, it’s just the reality of the situation we face today.

I think the best thing we can do is pay attention. What changes are being made on my behalf to protect me without my consent? Do these changes stick or do they fade away as the crisis weakens. We cannot be blind to the fact our freedoms can be taken away. If that were to happen, it would happen slowly and over a long period of time. It is your responsibility to protect your own freedoms. The best way to begin is to pay attention.

Today I’m at a point where I’m evaluating everything I possibly can to figure out where we really are and where we are headed. I hope you take the time to think about this too. We are accountable for holding on to our freedoms – no one else can do that for us!!

And no, I don’t know what the f@&$ is going on.

Two quotes to keep you thinking.

The end may justify the means as long as there is something that justifies the end.

– Leon Trotsky

They who can give up essential liberty to obtain a little temporary safety deserve neither liberty nor safety.

– Benjamin Franklin

#fitlife #fitness #fitnessmotivation #chooseeffort #ivegot2more #accountability #noexcuses #betterthanyesterday #endure #grind #7kids #fetalalcoholsyndrome #blendedfamily #trauma #ubu #coronavirus #opportunity #perspective # lifeskills #responsibility #budgeting # hardwork #sacrifice #portioncontrol #fairness #selfsufficient #covid19

School’s Out – Teach Life Skills

School is cancelled for at least a month. This is a great opportunity to push the pause button on worrying about long division and geometry (sorry to those I am offending – if it makes you feel better there is a laundry list of topics I could have used instead) and take this opportunity to teach our children life skills.

Obviously what you should teach will vary based on age and sometimes maturity level. Some things that have come to mind in the first couple days with the kids home from school are listed below. It’s a brief list meant to get us thinking about teaching our kids skills that will benefit them their entire lives. Think about those things you struggled with when you got out on your own or learned the hard way a time or two. Pass those lessons on now while you have the time and more importantly their attention. The point is to start thinking about the opportunity we have to teach our kids the skills they will need to thrive (or simply survive) in the world.

Budgeting – I am not sure there is anything more important than financial budgeting. Budgeting gives you control over your finances. It makes every purchasing decision relevant as it relates to your overall financial situation. Budgeting = Discipline; Discipline = Freedom. I cannot recommend this one strong enough.

Hard Work and Sacrifice – Kids need to understand that nothing comes without hard work and sacrifice. If you are willing to do those two things there is not much you can’t accomplish. On the other end of the spectrum, they should be taught what doors close if you don’t work hard in this world. All the things we take for granted are not going to be there if they don’t work hard – everything has a cost. I want to ensure I put my kids out in the world with a strong sense of reality versus a thinking that magically they will have all the same things dad has.

Add Value – Doing what you are told is good, but not remarkable. Doing the things not expected of you is what is important. Those things lighten the load for others and add value in so many ways. I live by the motto “See it – Do it”. Your future spouse and employer will thank me later.

Fairness and Responsibility – This is an exceptional time to discuss how life is not fair. Everybody has lost something at this point. Kids have lost school time, all extracurricular activities, play dates, and on and on. They should be bummed about this. They will likely start feeling sorry for themselves and what they are missing. They need to understand there will be times in their life when things simply don’t work out or go as planned. They need to know how to work through them and it is our responsibility to help them understand they are responsible for how they feeling – no one else. Now is the time to eliminate the victim mentality!

You are not the Center of the Universe (and Neither am I) – This idea seems to be non-existent in our culture today. Kids run the show. They dictate most family activities, meals, and so on. This is significantly more power than a child is capable of handling and we adults put them in that position without thought. Teach kids what they can offer the world, instead of what they can take from it.

Hearing No – They are going to hear no and get rejected often throughout their lives. We have an opportunity to help them work through this rejection by telling them no in a safe environment (ideally with a thoughtful explanation as well).

Car Maintenance – We spend a ton of time in our vehicles and place a heavy reliance on them. We should know how to handle basic maintenance. Things like changing a tire, changing a headlight, and changing the oil come to mind. These improve independence and save a ton of money at the same time!

Grow Something – We don’t understand where our food comes from. It just magically exists at the grocery store whenever we want it. Actually growing your own food, even a small amount, gives you a better appreciation for how amazing the land is and why we need to take care of it. This too is another example where you could be a little more independent and save some cash. I find great joy and satisfaction out of growing things.

Meal Preparation – Another easy way to be more independent and save money is knowing how to feed yourself, and I am not talking about microwave meals and potato chips. Learning how to cook (even just the basics) is a skill that will serve you well your entire life.

Portion Control – From an early age we are told to “clean our plates” and so on. That doesn’t serve us very well as we age, portions grow, and our activity level declines. We should be teaching our kids that feeling “full” is not a good thing and feeling “hungry” is not a bad thing. We should teach our kids that the amount of food they really need is far less than what culture tells them. They should listen to their bodies instead. Oh, and stop with all the snacking.

Cleaning – Leave the place better than you found it. This is a simple one and speaks to responsibility. Take care of yourself, clean up your own messes.

Open Up – Now is a great time to reconnect with your kids. Get to know them and let them get to know you at a deeper level. If you have older kids, I think this is incredibly important. Now would be a great time to talk about the mistakes you have made in your life, the consequences, and how you moved forward. I want my kids to see me as super – human. I hyphenate that word because there are two distinct meanings there. I want them to know I am human. I work hard every day to provide for my family. I have good days and bad days. I swear when I shouldn’t. I overreact. I screw up. But I own it, try to fix it, and move on. I do want them to see me as superhuman though. I want them to trust that their dad has their back and will provide a safe environment for them to grow up in.

We really need to take advantage of this opportunity we have in front of us. We have our kids attention for some period of time and should ensure we don’t waste it. It’s likely the world goes right back to the way it was in the coming months, but there does exist a chance that we are embarking on a way of living we haven’t experienced before. It the latter ends up coming to fruition the more independent and self sufficient we all are the better. Be responsible and be accountable!!!

#fitlife #fitness #fitnessmotivation #chooseeffort #ivegot2more #accountability #noexcuses #betterthanyesterday #endure #grind #7kids #fetalalcoholsyndrome #blendedfamily #trauma #ubu #coronavirus #opportunity #perspective # lifeskills #responsibility #budgeting # hardwork #sacrifice #portioncontrol #fairness #selfsufficient

Trapped

At this point the virus has a lot of us feeling trapped. This feeling is simply perspective though. I am sure other parents with children that have mental, physical, and emotional disabilities can relate to what I’m about to write and add to it. Here is some perspective for you all.

Our ten year old daughter with fetal alcohol syndrome (FAS) has been a complete mess the last two days. This has nothing to do with the virus or what is going on in the world. She is not missing school or friends. She simply cannot regulate her emotions when she does not get what she wants exactly when she wants it. This has been an evolving situation at school as well, which has led to major battles at home – see some of my older posts (most recently – FAS – The Chase).

I’m not sure if my wife is a saint or masochist – maybe both? She has more patience than I thought was humanly possible. She goes out of her way time and time again to give each child what their needs require. She is truly amazing at being their mom.

As expected, when school was unexpectedly cancelled for the next month, my wife went into planning mode immediately. We know that without a super structured schedule we would be in trouble. The two ten year olds tend to “thrive” (using that word loosely) in a structured environment. They struggle a ton when that structure disappears. We have learned this the hard way during winter, spring and summer breaks.

She set up a very, very simple plan for our FAS daughter. 15 minutes of “work” and at least 15 minutes where she can do what she wants. “Work” over the past two days has consisted of watching two Facebook videos on topics she loves – animals and drawing. This was apparently too much though.

Our daughter has hit DEFCON 4 both days now. Notice I didn’t say DEFCON 5. I reserve that for when I have to chase her through the neighborhood screaming stranger danger (her not me).

Today she got so worked up she gave herself a bloody nose. When she noticed the blood she immediately broke from the melt down and has been mostly ok since. It’s pretty clear this all begins as a manipulation game, then turns into a complete lack of emotional control when she doesn’t get what she wants, which then turns into a melt down. The level of frustration we feel with this complete lack of control is overwhelming.

On the other extreme our eight year old FAS son has no clue that anything is different. You may say, well of course he doesn’t know what is going on in the world, he is eight and has brain damage. That is totally fair, but not what I mean. He hasn’t noticed that his school aged siblings (all four of them) are home every single day. If you lived here that wouldn’t surprise you because you would already know he doesn’t understand days of the week (school days versus weekend days), the seasons (he asked why the pool wasn’t open when there was snow on the ground), or time (he wanted more time in the shower so he asked for 12 seconds). Living with these two is truly bizarre and very difficult to explain most days.

The point is we all live with challenging circumstances from time to time and it’s pretty likely that someone else has it harder than you. Keeping that thought in mind can be of great help when you are having a tough day. Especially if that day is your child basically calling you a kidnapper. If it’s endurable, then endure it. Stop complaining!

All that said, I want to get on my soapbox for a second. The real sadness in all of this is my wife and I aren’t the ones truly trapped (although I feel it most days). Those two kids are. They are trapped in their damaged brains every single day with no way out. Maybe medication and therapies can help our daughter control her emotions better, but it isn’t going to be cured. We have lost most hope that our son will ever function without significant help or know the world around him.

They didn’t choose to be trapped. They were put in a cell before they entered this world. The fact there is little to no outrage about the circumstances of this population is extremely sad.

#fitlife #fitness #fitnessmotivation #chooseeffort #ivegot2more #accountability #noexcuses #betterthanyesterday #endure #grind #7kids #fetalalcoholsyndrome #blendedfamily #trauma #ubu #coronavirus #opportunity #perspective

Perspective is Everything

I hope what we are living through ends up being a world that will never be the same.

This virus has brought the world to its knees on all fronts. There are deaths. Containment of the virus doesn’t seem likely in the near term. Limits put on our movements are growing by the day – a full quarantine or even stricter measures seem inevitable at this point. Governments around the world don’t seem to know how to react (I know there is a joke to be inserted here). Markets have plummeted. Grocery stores are being overrun with scared customers, some making selfish and irrational decisions. We all find ourselves living in a foreign world, one we didn’t see coming.

In times of chaos, perspective is vital. Take stock of your current state. Are your loved ones safe? Do you have a roof over your head? Do you have clothes on your back and shoes on your feet? Did you eat a warm meal today (or two or three)? Did you have a hot shower today? Most of us can answer yes to that and if you can then you have nothing at all to complain about.

No doubt the last couple weeks have been brutal and extremely confusing. It will likely get worse before it gets better. It is really important that we keep in mind the severity of the situation is different for everyone. We need to respect and understand this fact. For many, “challenges” have only come in the form of loss, loss on conveniences, loss of entertainment options and all the other distractions we take for granted. The fact we can’t get exactly what we want when we want it is truly a first world problem.

The stress and challenges are much more significant for those that have compromised immune systems. Worrying about being close to any other human at this point seems like it would be very stressful. I think and worry about the single mother and her child. She has to figure out how to work (assuming her employer is open for business) while having her child home due to schools being shut down for an extended period of time. I think about those people nearing retirement age that have lost a significant percentage of their retirement savings. The scariest part today for most is the fact we really don’t know what will happen in the coming months. The impact on this virus has been and will continue to be far and wide. Everyone will be touched by it in some way.

Regardless, we will be ok. We will eat. We will have clothes to wear. The markets will rebound. There is a really good chance what we do and how we do it will be different – and it may be different for a long time. We will adapt. We will evolve. That is what this country does. We will rise to the occasion in the face of this virus and all the fallout it will cause.

The other point of clarity I think we need to maintain is the fact we have not been to asked to sacrifice in any meaningful way so far. Staying at home is not a sacrifice. Generations before mine were asked or told to make real sacrifices. Sacrifices that had nothing to do with not being able to go to your favorite restaurant or the movies. We need to remember that. We need to maintain perspective and push through this with common sense and level heads. We need to help our neighbor in whatever capacity we can and keep moving forward. Eventually this will pass and we will get to look back at how we handled this crisis and feel proud!

A couple quotes that came to mind in the midst of the chaos of the last 24 hours or so:

#fitlife #fitness #fitnessmotivation #chooseeffort #ivegot2more #accountability #noexcuses #betterthanyesterday #endure #grind #7kids #fetalalcoholsyndrome #blendedfamily #trauma #ubu #coronavirus #opportunity #perspective