Parenting in a FAS World

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/

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

FAS – The Chase

Two of our children have fetal alcohol syndrome (it’s possible the third adopted child does as well). Having FAS is life changing. Living with someone that has FAS is life changing. These kids never had a chance at a normal life and will never experience most things you dream about for your kids.

Lately I have had these lines by Eminem in my head, “Have you ever been protested and demonstrated against? I have, I’ve been protested and demonstrated against.”

They have been rattling around my brain as we have gone through some craziness with our FAS daughter. Let me try to bring you into my world.

“Have you ever chased your child through the neighborhood as she attempts to runaway? I have, I’ve chased my daughter through the neighborhood as she attempts to runaway.”

“Have you had to physically restrain your daughter so she doesn’t harm herself, others, or your house? I have, I’ve had to physically restrain my daughter so she doesn’t harm herself, others, or my house.”

“Have you had your hands bit (and I mean chomped on) by your daughter as you try to protect her from harming herself? I have, I’ve been bitten by my daughter as I try to protect her from herself.”

“Have you ever had to pull your daughter back through a second story window as she threatens to jump? I have, I’ve had to pull my daughter back through a second story window as she threatens to jump.”

The first three happened yesterday. I guess I threw in the fourth for good measure.

It went down around 5:30 PM. I’m sure many are thinking there had to be things you could have done before it got to the point of restraining. My wife and I would give anything if that were true in this situation. I’m not sure there is anything we hate more than this.

We know with our daughter once she crosses a certain point there is no going back. There is also no successful negotiating. Incentives don’t work. Threats don’t work. Nothing works.

Can you imagine your child going up to a stranger’s door and telling these unsuspecting people she wants to live with them instead of you? I can, that happened yesterday too.

Back to the chase. My wife drove down the street of our neighborhood and quickly spotted our daughter. As always she was optimistic. Even on this dreary winter day she saw nothing but rainbows. She thought she could deescalate the situation. I don’t think she really thought that, but she puts on a good front and I had a brutal day at work. She was trying to ease my load – we really are a great team. She made all the standard passive and loving attempts to get things under control with no success. Similar to our son, when things get really crazy we are willing to give anything to get the situation under control. It never works though. Ultimately all this talking led to my daughter running further from home. At this point our daughter can’t really be contained in an open area by my wife. If she wanted to keep running that was what was going to happen.

I, being the realist in the relationship figured this was going to continue to escalate and sure enough I got the call from my wife. As I drove up, our daughter took off. She made it into a different neighborhood. This neighborhood connects to our via sidewalk. The chase was now on foot.

At this point we have no hope left. It’s clear nothing is going to work (nothing ever works, but we always try). My job changes. Instead of negotiator, I play the part of arresting officer. I have to get her back to the car by any means necessary and ideally without anyone in this neighborhood calling the police.

Let’s be honest, an adult white male, carrying a thrashing 10 year old black girl doesn’t look great.

Let me reset the stage. My wife and I are on foot. We have two vehicles in the general area. I have a thrashing ten year old in my arms. If anyone was witnessing this there is no other conclusion one can come to other than this is a kidnapping.

I decide our monster van (Bertha) would be best given there is more space and this short car ride home wasn’t going to be easy. My wife quickly unlocks the side door and rips it open. I manhandle my daughter into the car while she is screaming “Stranger Danger” (what the hell does that even mean? this can’t be the best thing we come up with for kids to scream if they are in trouble). My wife quickly slides the door shut and we drive away. Like any good van the windows are tinted, so no one knows what is going on inside – it wasn’t pretty, but we were in the van. I’ve played this game before, it’s almost over.

We get home, success! Not time to celebrate just yet. The inevitable battle of wills/wrestling match is ready to commence. This can go on for an hour if we are unlucky. Luckily today it only lasted five to ten minutes.

Now the sadness kicks in. No she isn’t feeling sad, we are. When she breaks she really breaks. It’s not gradual, it’s immediate like a glass shattering. The best way I can describe what happens now is uncontrollable ugly crying.

I have no idea what she is thinking in these moments. There is no apology. There is no more anger, but there is also no remorse. I have to think she is realizing, again, that her brain is not normal and she is trying to process what is going on. It is so sad!

I don’t think the breaking is the worst part though. The worst part and what scares me to death is how often she doesn’t really have an explanation for what triggered this extreme reaction. It just happens and then there is no going back.

Obviously this isn’t the first time and certainly won’t be the last time we face something like this. Luckily my wife and I know what to do when it happens to keep everyone safe. We are hopeful though because it does seem like the amount of time in between each episode is growing.

#fetalalcoholsyndrome #ivegot2more #7kids #endure #grind #accountability #noexcuses #blendedfamily