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

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