FAS – This is Real Life

FAS (fetal alcohol syndrome) is a very complex condition. 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.

FAS sucks – period. The worst part of it is these kids never had a chance to live a normal life. They will have struggles forever that most of us cannot comprehend. As a parent, it is heart breaking to know they won’t get to experience the things in life you dream about for your kids.

As a parent of a child with FAS, you realize (eventually) and hopefully accept that FAS is about change. As a parent of a child with FAS, YOU must change. You won’t be able to change the majority of what comes with FAS (I am speaking of my experience – there is a spectrum so to speak with this syndrome – our two FAS kids are on the severe end of this spectrum). You likely won’t be able to change the impulsiveness and unpredictable and often times aggressive behaviors. Maybe you can somewhat control them with medications, but even that is a process and often times fruitless. It’s important to keep in mind at all times that the cause of all of the behaviors and craziness is brain damage.

I’ll have to write several posts on this topic. It’s far too complex and all consuming to get it down in one post. I think I’ll start with the some of what we have learned and adapted and save the craziness and extreme things we have dealt with for a later post.

Man how I dread that question. You know the obligatory “how are the kids?” question. I never know what to say to it. One, I don’t really think most care to really know how the kids are doing. My wife thinks I’m crazy for thinking that and she may be right. Two, I never know how to answer when it comes to my FAS kids. I probably should answer, “how long do you have?”

I feel like to really answer that question, I have to give a lot of context. You need a foundation before any answers will make sense. A major reason I wanted begin this blog is to get some of this out in the world. I’ve been very diligent to keep this part of our life private. It seemed necessary because we were (and still are) trying to figure this out and get it under control. I think we have reached a point now where it is a good time to make a change. Who knows, I may change my mind again.

First it’s important to point out this won’t ever be ok. This life is going to be challenging forever – mainly emotionally, but certainly the management of day to day life for kids that won’t be able to really take care of themselves. It is very hard to work through this every day. My wife and I have to be very structured and always on the same page to make this work. All these words are hard to read and even harder to type, but they are my truth. The only chance you have at living your best life with this terrible syndrome is to change. You need to change. You need to change in ways that don’t feel natural, that don’t make sense, and the change will never end. You will not figure this out.

One of the most important words we use as parents in this world is Accommodation. I am not sure I used this word much before I came into their lives. It is probably the word that best describes our parenting philosophy and all the success we have experienced.

We have learned over the years and through an insane amount of trial and error that almost all battles with them are not worth it. The emotional and physical scars my wife and I have are proof of that. Not to mention the scars on our home. I’ve read that many parents with children with FAS have PTSD. I used to think that couldn’t be possible. I can absolutely see it now. The ups and downs that are 0 to 100 in a matter of seconds can change a person. I don’t know that anyone is born to parent this way. I think it is a learned behavior – learned based on our survival instincts.

The most significant accommodation my wife and I have made relates to medications. We believe medication is a last resort, not something you default to. Our two FAS kids take a significant amount of medication now. We are very fortunate to have worked with a doctor that is an expert with FAS kids. He helped us navigate most of this. We are working with a new provider now. She seems great, but there is a lot to learn about what we have going on.

We need special approvals for many of these medications as they aren’t normal for kids to take. We have tried and moved on from more medications than I can remember. I’m certain my wife could be a pharmacist at this point.

The medications aren’t there to cure anything. That isn’t possible. It took me a very long time to realize and come to terms with that. The medications are there to help the kids live their very best life. Most days that means simply surviving this world. The medications below are just the morning routine. We do the same thing in the evening. And it’ll probably change again next month.

Some other ways we accommodate that are in opposition of our parenting beliefs. We are fairly strict with our other kids related to time on electronics. For our 8-year old, we have essentially given up on that. Time on his ipad is his favorite thing in the world and the only way we have seen him learn anything in years. We have tried many, many things to help him learn basic things (numbers, letters, etc), with no success. This includes school, which failed in an epic manner. His school accommodated him more than I could have ever dreamed of. They couldn’t have been better with their willingness to adapt and their overall patience. The only thing he can talk about that kind of makes sense is Minecraft. Thank God for Minecraft.

We’ve learned that the 8-year old hates leaving his safe place – his bedroom. Going outside, including to relatives houses or simply running through a pick-up line at the grocery store (in the car) is too much for him. He doesn’t go on family vacations anymore. It is difficult to know if he just doesn’t care about not going or doesn’t even know we are gone – how sad is that? A couple years ago he decided he can’t handle the feeling of clothes, so now he only wears pajamas. You are probably thinking we didn’t try hard enough. We took it to the extreme of taking all PJ’s from his room, leaving only sweatpants and soft shirts (which closely resembled his pajamas) to see if we could break it over a period of time. What happened? He chose to only wear underwear and socks for a week straight. Needless to say, he is still in PJ’s. I assume it will end at some point, but I wouldn’t bet on it. I’ve gotten over what I used to be embarrassed by related to this – I changed.

Our 10-year is a little easier to work with because she can communicate in a way we typically can understand. She has also gotten to a spot where she can self-select out of things. We were at her grandma’s house for Christmas. She chose to leave early because there were too many people there. This wasn’t a big deal for us because we know we need to drive separately to events now.

We have locks on almost all doors in our house, including our refrigerator and freezer. We have moved knives to a locked cabinet. We have several cameras in our home to try to get ahead of any escalations and also keep them safe. It also gives us comfort if we do leave them home with a sitter.

Unfortunately, none of these actions were proactive. These are all reactionary and us learning from what our reality is. It is vital you own your reality, not pretend that it is something better or some improvement is just around the corner. You are doing no one any good with that idea – not yourself, but especially not the kids.

We have built an incredible structure in our home, which I am certain helps these two live their very best life. They need the structure. They crave the structure even though they can’t say it. They also need accommodations in almost every area of life. We are learning these every day and will continue to learn them each day because this never gets to a steady state – it’s a constant evolution.

Almost everything above is against my nature as a parent. As a parent, I expect my kids to follow the rules, use common sense, be responsible, and so on. That doesn’t work with these two. I have learned to adjust. It is a constant work in progress though and many days I feel like a failure. I’ve also learned to not give a shit how people (strangers and sometimes family) look at us when a kid is behaving a way that makes no sense and can seem crazy.

I have gotten far more from these kids than I’ve given to them. They have helped me change the way I see the world. Change how I view individuals and their behaviors. I see the world as an even more complex and constantly evolving place. Most important, I realize how little I can actually control.

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

Getting Started – My Life, the Short Version

I have been curious about blogging for some time now. Getting things that bounce around my head all day on “paper” seems beneficial – even if it’s just for my sanity.

I also think blogging, and social media generally, could be a nice add-on from a parenting perspective. Don’t misunderstand me, I think parenting should be face to face 99.9% of the time. But I think we should consider the impact that social media and technology has on all of us, especially our kids. It seems foolish not to take advantage of another way of potentially reaching our kids and young adults. Maybe there is an impact, maybe there isn’t – I don’t think it hurts to get in front of our children any way possible.

Ok – let’s begin with some context.

The serenity prayer hangs on the wall of my office. It hung in my wife’s grandmother’s home for many , many years. I think my wife knew the words in that frame would come to define how we live our lives and that I had to embrace them to find real happiness.

Living those words each day is my goal. More often than not I fail. I hate that I simply can’t flip a switch and live them each day, I am proud that regardless of what went on yesterday, I get up and try again. Let me give a little context about why those framed words resonate so much with me and our family.

My wife and I have seven (YES 7!) kids. Nothing about how we got here is normal. We didn’t set out to have a big family. We have a big family because we chose each other and never looked back. Let’s do the math on this:

I have two kids from a previous marriage. They are in high school and middle school. They are exceptional people. When I thought about being a parent I never dreamed it could be this good. I’m consistently proud of who they are as people. They are kind and amazing with our younger kids. Watching those relationships develop has been really rewarding. They make me think I’m not screwing it all up – and some days I need that feeling.

My wife adopted three kids while she was single (after we married I adopted them as well). They are all very close in age. Two are in elementary school. The other unfortunately can’t attend school at this time (we’ve tried many options at this point with no success). Two of the three are biological siblings and have Fetal Alcohol Syndrome (FAS). Most people I know don’t know what FAS is (I certainly didn’t), so talking about it with others can be difficult. I find myself hesitating to answer questions about them because I feel like I need to give enough context to help it make sense for people. It’s been a major struggle for me. I’ll get into the reality of FAS in other posts because I do think those dealing with it or similar disabilities need as many people as possible to relate to. Raising kids with FAS is easily the hardest thing I’ve ever had to do. The non-biological sibling doesn’t present with FAS signs, but based on the environment she came from, it isn’t out of the question. She has significant emotional trauma and attachment related issues. Honestly, with where we are today, it is hard to believe I’m typing this, but navigating how to raise her may be harder than the two with FAS.

I find myself feeling overwhelming sadness for them at times. I think it happens more now as they age and fall further and further behind peers. I think it’s also because lots of the emotional trauma they’ve experienced in the past is being processed by me with a slightly more mature mind.

They have a ton of issues and likely won’t lead anywhere near a “normal” life. My anger at that reality likely won’t ever end. They will live these lives simply because their biological parents made horrific decisions. These kids had no control, no choice in the matter. I see now after a lot of thought that their biological parents didn’t have a chance either – its a never ending cycle of bad decisions that have ramifications that last generations. I have very strong opinions on what can be done to solve some of these problems, but I’ll save that for another post.

All that said, they all have unique personalities, things they enjoy and things they can’t really tolerate. More than anything, they have a ton of good in them. It’s not always obvious and sometimes you really have to look hard, but it’s there.

Finally, my wife and I have two little girls. The older of the two is absolutely amazing. She is a fun, independent ball of energy. A day doesn’t go by when she doesn’t amaze me with the words she uses or what she is able to do on her own. Our littlest is just a baby and going through the phase where there are smiles and more awareness of her world – we can’t wait to see her personality develop.

That’s my immediate family. It’s fun. It’s almost always crazy. It really, really hard at times. I’m not sure it could be more complex – blended, adoption, biological, and disability – that’s a lot. And I guess something that never really comes up, but throw race in there too.

I think my wife and I are pretty damn good at it though. It’s not easy navigating all of it. The wide age gap in kids, the needs (including significant special needs), logistics, and just all the stuff that comes with a large family.

My wife and I define success based on the love in our home and the safety that each of our (7!) kids feels every day. I think we are succeeding. Regardless, I know we show up every day and try – that is really what life is about – you have to put in the effort.

We are showing them every day, through all the ups and downs what a family really is. I’m grateful to be able to witness all the wins and all the losses each day and know we are growing together.

Oh yeah, I also am an executive at a venture-backed start-up with headquarters in another state (which means I have to travel from time to time). More on that part of life later.

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


I wrote this one on January 17. With the recent passing of Kobe Bryant, his daughter and three others (unidentified at this time) I felt it was the right time to publish it.

I work really hard at maintaining proper perspective day to day. Often times I realize I’m giving things far more attention and thought than they deserve. It’s something I really have to consciously work at. I think it’s something most of us need to work a lot harder at.

It seems it’s easier and easier to get lost in our need to scroll. Five minutes away from the feed or the favorite app creates anxiety.

We care more about the opinions of others than ever before, even though those opinions are coming from people we don’t know, will never meet, and likely don’t really respect. The reasons for all of this are very complex. I’d argue it boils down to one reason, but it’s hard to hear – it’s laziness. Today, many aren’t living their own lives because it’s easier to live in the technology, live anonymously, not really live at all. Sorry for the tangent. The point I am trying to make is it’s very easy today to lose perspective because we are jumping from one thing to the next so quickly.

In the past two weeks I’ve come to know about two young (under 40) individuals that went from being seemingly fully healthy to being diagnosed with Stage 4 cancer – one has since passed away. If that doesn’t give perspective, I don’t know what will. I don’t mean that. I am confident it won’t give you perspective. It may buy you a couple minutes, maybe a conversation about the topic, but nothing that will stick – time to see what’s new in my feed…

Maybe it has to hit closer to home. I’ve been fortunate not to experience too much ill health or death in my life. That said, over the last couple weeks my perspective on things has changed due to some family things we have going on.

As I type this I am holding my baby girl, while my wife is having surgery (outpatient). The details aren’t important, but she is under anesthesia and they had to go over all the worst case scenarios with us. I have no reason to be worried, but that “chance” something could go wrong is terrifying. And no, I’m not terrified because I have seven kids 😀. (Update – surgery went great and after several days to recover – general soreness, etc. she is doing great).

Right after Christmas I spent time in the emergency room with my oldest son that put a good scare into me. Luckily, he is totally fine, but things like this immediately reset your idea of what matters and what doesn’t in this life.

How can we hold on to this feeling? I wish I knew. I fall back on the only thing I know, which is to be deliberate with my thoughts. Reminding myself often that whatever is consuming my mind likely isn’t that important, and even if it is, it will pass in minutes, maybe hours, or sometime days. The only way I can live my best life and be at my best for everyone else is to keep perspective. Everything that matters takes work – you have to put in the effort.

A couple quotes that resonate on the topic for me.

“Man is affected, not by events, but by the view he takes of them.” -Epictetus

“We suffer more in imagination than in reality.” -Seneca

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

I’ve Got 2 More

Birthing our first daughter was not at all the natural experience my wife wanted. She had to be induced, which led to medications that really took the birthing process from natural to medical very, very quickly. Although she loved the miracle of birthing our first child, she regretted not experiencing it the way she wanted – naturally.

Birthing our second daughter was natural in almost every way. My wife was amazing and owned every moment. From laboring at home, the ride to the hospital, pushing through the various phases of labor, and then ultimately pushing our little girl out into the world. It brings me to tears just thinking about it all now – it truly is a miracle.

For anyone that doesn’t know, the pushing phase is not push once or twice and the baby is out (maybe it is for some, it hasn’t been for us either time). There is still a ways to go when you begin pushing. I am not really sure how much time it took. Time is not really a thing when you are experiencing child birth (even as an observer). I think it was between 30 and 60 minutes??

Anyway, my wife didn’t have any medication during the birthing process, which was her number one goal. You obviously feel things in a very real way without medication – it is hard for me to comprehend the pain of childbirth or even how a woman can deliver a baby – it’s crazy.

I hated to see her in pain. The pain of transition and then pushing. It’s absolutely the most helpless feeling in the world, especially for someone like me – a fixer. I would have taken it all if I could. I do steal from this experience all the time though. Anytime I have to do something that requires mental toughness I think back to this. Things like lifting, HIIT and parenting come to mind. When they get tough I tell myself “Don’t be weak, it’s not like birthing a child” – works every time.

She had been pushing for a little while now. After one of the contractions ended, she laid back and said, “I’ve got 2 more… That’s it!”. Of course everyone in the room agreed and assured her the baby would be out in 2 more contractions.

Reality was probably closer to 10 more contractions before the baby arrived. She had 2 more. She had whatever was needed to deliver our baby girl. Those moments have really stuck with me. I was so humbled and inspired by what she was able to endure to achieve her goal. She was willing to sacrifice, go through torture, and get past I don’t even know how many mental hurdles to ultimately deliver our baby. I was and still remain in awe!

I love that woman with all my heart and I couldn’t be more proud of her!

I’ve got 2 more!

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