A letter to my children….

Your greatest challenge and my greatest hope for you is this – Find Your One! It will not be easy. You will make mistakes. You will get frustrated. You probably will get hurt. You may even hurt others (never do it intentionally, it is not worth it).

There is no rush. Any sense that you are running out of time is not real. There are no rules governing this. When you find this person, you will know. You will probably know immediately. Life is great. Living life with someone you adore enhances how great life really is. Remember, jobs will come and go. Friends will come and go. Sadly, your kids will even come and go (the reality that my kids will move out someday is beginning to hit me). The person you choose for the rest of your life will be there through it all. All the good and all the bad. Finding comfort and excitement in that reality cannot be measured.

Looking around, it is very easy to see most never found the one. I am sure there are countless reasons why this happens. I think there are just a couple reasons that drive most of the misses though. If you do not know yourself, I mean really know yourself, you will not find your one. I think many people feel rushed into finding the one. They see their friends and colleagues moving through the various milestones in life and feel compelled to keep up. Do not fall into this trap. There is a reason the divorce rate is greater than 50 percent.

I started out blogging so my kids could see a different side of me (or ensure they did). Below are other things I have learned in 40 plus years on this Earth. This is for them and I will update it as I move through the rest of my life.

There are no rules. There is not a guidebook to follow. No one has it figured out. Do it your way and on your own pace. Ask questions (ask lots of questions) of those you respect. If you ever worry you are not doing it right and have doubts, simply look around. Most people are just fine, and you will be too.

You got no control. Let go of any preconceived notions that you have control of your life. That is not to say you do not control your actions, you do, and you are fully responsible for those actions. What I mean by no control is you must remember that tomorrow is not a given. Tragedy and hardship may be lurking around any corner. This does not mean you should act recklessly. It does mean that you should strive to get the most out of each day. Only you will know what that means.

Control your ego. Life ends up being pretty simple if you can learn to control your ego. Your decision making will be sounder. Your view of your life, life in general, and those within it will improve dramatically. Your relationships will be deeper. You will learn more. What I want you to know is there is no scoreboard. There is no winning and there is no losing. You have nothing to prove to anyone.

You Be You! Be your authentic self. This will take work and a lot of trust. The outside world will fight like hell to carve you into the person it wants you to be. Do not let it. “Finding yourself” is a journey that has no destination. You will evolve as you grow and have experiences. I think we all know who we are deep down and even more important I think we know who we are not. We should not be ashamed of either and should not apologize for who we are. We should try to be better every single day. Fuck the pressure of what others believe is right, cool, or necessary. You do not (and probably should not) follow the crowd. Challenge yourself every day. Trust your gut. Staying true to your core will set you on your best path.

Effort is always part of the answer. In this life, putting in honest effort will never be a regret. This is especially important in relationships you choose to enter into. Clearly it can apply to work and day to day life as well. Work hard but keep your eyes open. Keeping your eyes open will help you know when it may be time to move on. Being the hardest worker on a sinking ship is not wise.

You are responsible for yourself. Take ownership of yourself and your surroundings. Leave the excuses to others. I believe it is rare that something happens to you that truly changes the direction of your life. Take ownership of the little things that feel like big things. Evaluate what they are and determine their value. I think you will find that most things do not have a lasting impact on your life and can be let go rather quickly.

Leave the world a better place. Anytime you can make someone’s day a little bit better, do it. You will never regret it. If you get to the door first, open it. If you see garbage on the ground, pick it up. If the toilet paper roll is out, replace it. If there are dishes that need to be done, clean them. The result is you feel a sense of accomplishment, but more important you will make someone else’s day a little bit better.

It is ok to be taken care of. If someone opens the door for you, step through and say thank you. If someone wants to help you, say yes. It is not a sign of weakness to be taken care of. Coming to rely on being taken care of is a weakness though. Take pride in the fact you can take care of most things on your own. Feel joy and comfort knowing there are people out there happy to help you.

Set boundaries. Not all people and things are good for you or have your best interest at heart (in the case of people, it may not be their fault – have grace). It is not possible or even appropriate in some cases to avoid them all. Set proper boundaries. Boundaries will help you keep relationships and other things in your life contained to mostly positive experiences. Lack of boundaries can lead to negative experiences with people and things that generally can be easily avoided. This too is not easy. It will take experience, and some hurt to determine which people and things need boundaries and what the boundaries need to be.

Protect your health. This is within your control. Mentally and physically, you can choose to work on yourself every single day. Do it! The benefits will pay off forever. Good health is freedom. Good health allows you to do what you want when you want to it without reservation. Without focus, good health can deteriorate quickly and can be extremely difficult to restore. After putting effort into your most important relationships, you should focus on your health. Every single day.

Live below your means. This is another freedom that is completely in your control – financial freedom. Choose to live below your means. Not only will this create good habits for your life, but it will afford you the opportunity to make mistakes that do not have devastating financial consequences. Financial freedom also gives you options that most do not have. Living below your means comes with a very valuable lesson – material possessions do not matter. I believe you will find very quickly that not having whatever you want does not impact your life in any meaningful way. You will find a great deal of freedom when you realize that you have few “needs” and many “wants”. Once you figure this out, you can reduce those “wants” to trivial meaningless things that don’t even make the “want” list anymore.

Have fun, but do not allow yourself to be in a situation you cannot get out of. This can be applied to everything in life, but I am speaking to alcohol or any self-medication now. Remember, lying on your stomach with your arms wrapped around the toilet will be your memory, not all the fun you had leading up to that moment. Your ego will play a role here too. If you have not set it aside, self-medication is even more dangerous.

Life is extremely short. It will not all be pleasant. In the end though, we all move through this life one day at a time. Every day we go to bed and know we will not live the same day over again. We can count on both the good and the bad from the past to be gone. We are living this moment only. Be present for this moment. This moment will pass quickly too. Enjoy them all as best you can. Find those you want to share your moments with. Find the things that truly bring you joy. Spend your time and your resources on these people and things. Do not waste one second. Seconds add up very, very quickly!

As I continue on my journey, I know I parent too often by using the time-honored phrase, “do as I say, not as I do”. I try to improve on that every single day. It is not easy. I want to be a better role model and ultimately a better person. One of the few things I know that I get right is my effort. I will always put in an abnormal level of effort. It is the only way I know how to be. You can count on that. You can count on me to be there, always! I Love You!

Contradictions

It’s December 23rd. Just two days until Christmas. The younger kids are all very excited. My wife and I are very excited to see Christmas through our 3-year-old’s eyes. She has been counting down the days and can’t wait for Santa to come. Excitement is just one of many feelings for my wife and I this time of the year. It’s safe to say that major holidays are one of the most complex times for us emotionally. Why?

If you’ve read my previous blog posts, you know our family is very complex. The feelings we carry for our children are also complex and can vary wildly. Like most parents we are damn good at hiding how we really feel in the moment for the greater good. We have a lot of experience. My last post had a situation that was a perfect example of that.

Child 2 (Age 11) dropped a large glass bowl because she didn’t want to eat. I mentioned we reacted perfectly. No big deal, it was just an accident. Don’t worry about it. That wasn’t really how either of us felt. For several months now we have been dealing with major issues with her. She’s run away on more than one occasion. Literally run away. The first time, my wife and I both were driving around our small town trying to find her. Once we got eyes on her she ran towards and alongside the river. I was able to chase her down eventually. That was a scary one. On the other occasion, I literally went Terry Crews and tackled her broadside off of her cousin’s bike in the street to prevent that chase from becoming something we would have lost. I’d like to avoid calling the police until we have lived her for at least one year. Then there is everything she has taken from us. Food, iPad, various other things you would never think an 11-year-old would want to mess with (Shampoo, Lotion, Bleach, yes Bleach). She has been completely exhausting.

We are gearing up to have some very uncomfortable conversations with Child 1 (Age 11) about how Christmas morning is going to go because we refuse to have her ruin it for us. We have to explain what acceptable behavior in detail. Please let our 3-year-old experience everything for herself. She doesn’t need help understanding what is going on. She doesn’t need to sit in your lap. She doesn’t need help opening her gifts. And oh yeah, we are her parents and can handle anything she needs. We have to tell her the same things about our 1-year-old just to be sure we cover all bases. This may seem insignificant on the surface, but think about having those kinds of conversations with your 11-year-old child. Now think about having those conversations with her on an almost daily basis. Now finally think about having those conversations and you have no idea if she understands you or is playing dumb. Her lack of social awareness and basic family dynamics is completely and utterly exhausting.

And we have Child 3 (Age 9). Last year he slept through Christmas. My wife was sad about that. I think it was sadder that when he did wake up, Christmas wasn’t really a thing. He opened his gifts (mainly candy) and moved on with his day. He asks for almost nothing – really just candy each year. It actually makes sense because he doesn’t play anymore. Hasn’t in a couple years. It feels weird though as parents to not buy your kid toys for Christmas. Based on his current schedule, it is likely he will celebrate Christmas morning with us this year. We will modify literally everything if he is around. We will tell our 3-year-old to wait on opening gifts to allow him to open all of his first because that is what has to happen. She won’t have a problem with this luckily. She is used to waiting because he has to go first. She is a special little girl. I don’t think he will cause any problems for us if we are prepared to let him have a shitload of candy. Believe me, we don’t care. We keep the peace at almost any cost. Mainly we know the fight doesn’t matter. If he gets locked in on something it is best to let it be. There is no lesson to be taught. It’s likely he won’t even remember the situation in several hours.

Our little one’s though, we cannot wait. To see the excitement in my 3-year-old’s eyes is something we can’t wait for. It’s a breath of fresh air to think about. We are also excited to know we will get to experience that first again in a year or two with our baby girl. I’m excited for Christmas with my older two as well. They don’t have the excitement of Christmas in their eyes like they used to, but I know they look forward to our traditions and that makes me very happy. They both bought gifts for everyone in the house on their own this year. I hate how old they are. They are good gift givers and I know they enjoy seeing the reaction on the faces of the kids as they open them. Mostly though, given their ages, I am thankful and happy for the time I have with them. I realize how short it is and how quickly it passes.

Around major holiday’s, my wife makes notes for herself to stay off social media. We both know it shouldn’t matter, but it does. Seeming “normal” families doing “normal” things is painful, even if they are staged. I think it is mostly painful because as the months go by, “normal” things become harder and harder for us. Simply walking downtown to see Christmas lights must be timed perfect. Is Child 2 in an ok mood? Does Child 1 have an attitude? Is our nanny around to be there for Child 3? My wife’s tradition of doing Christmas cookies has also turned into a situation that takes a great deal of thought and effort. Make sure Child 2 doesn’t eat 10 cookies or steal anything (frosting, dough, sprinkles, etc.). Make sure you compliment Child 1 over and over again or she will get a major attitude, and everything will come crashing down. Pray that Child 3 sleeps through it.

Did you notice what I left out? Take another look. I didn’t mention the 1- and 3 year-olds. That’s because we don’t really think about them limiting us in any way. This isn’t really a surprise for me because of my oldest two, but sometimes it is hard to wrap my head around how little we worry about the two little ones compared to the middle three. We certainly get a laugh sometimes when we read about the challenges of having two little ones to parent. Everything is relative, isn’t it?

During the Christmas cookie making I overheard someone ask my wife, “is this what you dreamed of”? I am not sure she answered. If she did it was the blanket nod and smile, we are really good at in these situations. The answer is no, this is not what she or we dreamt of. We never dreamt it would all be so complex and difficult. We never thought it would require so much thought and so much effort every single day without fail. We didn’t think 11 and 9-year-olds would be constantly more difficult than a 3-year-old.

After my last post, a friend of mine (I have very strong opinions on how we use the word “friend”. I won’t allow myself to use it in this case. The right word is acquaintance. This is the right word because I am really, really shitty at staying in touch with friends after our paths don’t cross naturally. It’s the right word to use and it’s the right thing to do. Maybe this should be a blog post topic in 2021.) dm’ed me some kind words. He said, “there is a special place in heaven for you and your wife”. He is certainly right about my wife; I have no doubt about that.

Ultimately his message got me thinking that I need to write a blog post to explain why I write these types of posts. Let me take care of that right now. I write because I know there are other parents out there going through similar things. Other parents with children with special needs. Parents and kids in very difficult situations due to divorce or separation. Parents and kids in very difficult situations due to lack of resources. We all have our shit to deal with. We all face complicated feelings and contradictions deep within us that oftentimes leave us feeling like shit. I have no answers. I can offer a little comfort though. Comfort in knowing they aren’t alone in those feelings and contradictions.

Find that win!

Parenting Disability

It was supposed to be peaceful Saturday. Almost Christmas. Not much left to do thanks to my amazing wife. We looked forward to a simple day. Time together, hanging out on the couch. A welcome and rare thing for us. That’s part of the deal when you have seven kids, not much downtime typically. We also looked forward to the Notre Dame football game that was set to begin at 4. We all look forward to the tradition or routine a football game brings to the day. I think we both love how excited our 3-year-old gets too. A little normalcy in a crazy life and crazy year.

Reality set in around noon. The crash of a large Pyrex bowl shattering as it hits the floor brings us back to reality. If something bad and unusual is going to happen, it is almost always going to involve the younger of the two 11-year-olds. Let’s call her Child 2. Glass was everywhere. We reacted perfectly. No big deal just an accident. I won’t let this “accident” mess up the day.

My wife and I go into cleanup mode. We are experts and a sight to behold. Get the little ones. Sweep it. Vacuum it. All set in a matter of minutes. We are incredibly efficient. We are very experienced. We will keep the peace. We will ignore the fact the bowl dropped because Child 2 was pissed we asked her to eat lunch. We have to encourage her to eat because she continues to lose weight. That’s over, all is good.

About 15 minutes later we must intervene between Child 2 and the other 11-year-old. Let’s call her Child 1. Child 2 has gotten her feelings hurt, again. Child 1 does this deliberately and far too often. We need to address this. Child 2 needs to know we have her back. It’s really hard to talk to Child 1 about these things though due to her trauma and maybe FAS. It tends to be very frustrating and we are unsure if she understands the pain she causes. It’s very difficult to know how to parent her. What words to use. What is the right amount of force and disappointment? How much follow-up reassurance is needed? Will this ever get easier? Will she ever feel like our child?

We made it through. It’s hard and stressful, but that is really relative. This is typical for our life, so we know how to grind through very difficult situations. We are still primed for a relaxing afternoon. Take a deep breath and move on.

Yes. We made it. 4pm. Game time. Bonus, the 1-year-old is down for a nap. Our 3-year-old is ready for the game. This does feel like a nice break from the day-to-day grind.

We are into the second quarter. The game isn’t going well for our team. I don’t really care. One of the few areas I’ve matured in over the years.

The doorbell rings. Ok no big deal. Probably the neighbor kids. Nope. Child 1 and Child 2 are screaming from the front door, IT’S THE NEIGHBORS. (Our neighbors are a great couple. They are a little older than us, their kids are long out of the house by now.). The screaming at the front door is a little embarrassing, but very much expected at this point.

I get up to answer the door. My wife is getting the 1-year-old up from her nap. Our neighbors are very nice. We aren’t close, but they have seen us outside many times this summer and we have talked on a number of occasions. They know we have a big family, and we have big challenges. They don’t understand the depth of the challenges, but they are aware of the issues. How thoughtful. They stopped by to bring us a Christmas card and homemade cinnamon rolls.

We are chatting in the doorway. It’s a little odd that both Child 1 and Child 2 are standing on our stairs inside the doorway while the adults talk. It’s not really surprising and I’ve learned it’s better to ignore than to say anything. All is going well.

We show our neighbors around the house a little. We have made a number of changes they were curious to see as they know the house well. Within 5 minutes of our neighbors coming in, our 9-year-old makes an appearance. Let’s call him Child 3.

When Child 3 makes an appearance, with company around or not, sirens go off around the house (not literally). We immediately move to DEFCON 3, maybe 4. With company of any kind, family, neighbors, or neighbor kids, we go directly to DEFCON 5. My wife and I seem to have developed hypersensitive sensors in our brains that help us navigate when he is around. The only question we have now is how crazy will this get? There is no hope for a reasonably normal interaction. There is nothing left to do but pray – pray no one gets hurt and we aren’t too embarrassed when all is said and done. It’s kind of like watching a funny (or sad) tv show and we are the stars. Buckle up!

He’s clearly ramped. The standard 0-100 mph is less than a second. My wife and the neighbor lady are in the dining room, while the neighbor guy and myself are in the living room. In just a couple minutes he gets his hands on a spray bottle. He sprays everyone in sight. Luckily, he misses the neighbor lady. I’m still in the living room listening intently while still trying to appear engaged in our conversation. I’m waiting for my wife’s call to intervene. Wait, what is that noise?

Why the hell is someone emptying ice cube trays right now? This was clearly not a visit where a drink needed to be offered to our guest. Immediately my mind runs through the standard scenarios. Who could be doing this at such an inappropriate time and within a couple feet of where my wife and neighbor are standing? Child 3 is not capable of emptying the ice cube trays. It’s only Child 1 that would do something like this. Why would she be doing it now? It’s actually very simple. Anything new is the best thing that’s ever happened to her. She can’t miss a minute. Four adults shooting the shit is amazing.

Child 3 has moved to eating. At his last psych visit, I heard a new term – hunger aggression. Why wouldn’t he have that too. He gets an apple sauce. He’s a gentlemen’s so he offers one to our 1-year- old and one to the neighbor lady as well. She politely declines.

The apple sauce goes down smooth, just like that shot of whiskey I desperately want to dull this pain. I work my way into the dining room area to try to better monitor the situation. I’m just in time to hear him tell our neighbors how he doesn’t sleep at night and sneaks down and steals things. Both comments are accurate, so how can I be mad?

Now he’s found a large red bouncy ball (thanks grandpa for winning that damn thing). He is running around the dining room table like a maniac. The sounds coming out of him are unworldly. The chaos is reaching a tipping point it seems. Luckily Child 3 disappears. Where did he go? I’m not sure, but we are moving in the right direction.

Child 1 is now summoning me from upstairs. She tells me Child 3 is using the spray bottle to spray the walls upstairs. I apologize to the neighbors and excuse myself. I don’t think they understand this apology. This one is meant to be a blank check. I’m sorry for everything that has happened and everything that is about to happen. It’s also a signal for them to leave.

The most poignant moment happened around this time. The neighbors were telling us they were headed to their friend’s house after this visit. My wife instinctively turns to me and says, “wouldn’t it be nice if we could have friends?”. I instinctively respond with a yeah, that isn’t going to happen anytime soon. We can see this statement catches the neighbors off guard. My wife immediately begins to explain our situation in a little more detail, so they can better understand why she would say such a thing. We like when people have some understanding of how the disabilities our children face feel like they turn our home into a prison. The locks on every door and most cabinets help to hammer home the point.

We rarely say things like this out loud. It catches us both off guard later in the night. It’s a brutal truth we choose to not speak into the world most of the time. We generally keep those thoughts private. Locked down between her and I. More than anything I think it’s a survival technique that we have mastered.

I head upstairs to deal with Child 3. I’ve learned over the years that trying to take the spray bottle away immediately would be a catastrophic mistake. We distract and pray. Communicating with him sometimes requires a special language and always require insane amounts of patience. I’m lucky tonight. I get the spray bottle away from him after lots of communication about random apps he likes. Most important he is not mad. Everything is ok. I head back down and try to pretend I’m a normal adult.

I find the group in the basement chatting. This seems good. Normal. Just the two little ones and the adults. Totally normal. We are shooting the shit about plowing the driveway. Will I do it myself? Hire someone? Hey who mows your yard? This I what normal adults do right? Just then Child 2 sprints down the stairs to tell me Child 3 is threatening to throw his iPad (most prized possession) and himself over the upstairs railing. It is unclear what order he was planning on. I very quickly apologize again, for everything, and run back upstairs to what feels like my second full-time job.

He quickly informs me he does not want his iPad anymore. I remind him we played this game several days ago. He didn’t want the iPad and within minutes he came out asking for it again. His brain is so messed up, it’s painful to watch. Reason never works, so I am forced to take the iPad with me.

I’m not dumb though and I do not want him back downstairs. I stand outside of his door with the iPad and tell myself to give him five minutes. If he doesn’t come out, I will head back down. In less than two minutes he pops out asking for the iPad. I hand it over and say one more prayer – please don’t come out of your room again. His brain should be studied. Will this nightmare just end?

I head back downstairs and realize the neighbors are gone. Thank God! Emotions now are allowed to be felt. Our heads are spinning. Our two neighbors coming over to say Merry Christmas turn our house into total chaos – immediately! They were here for maybe 15 minutes, but it felt like hours. Each of the adopted kids put their disabilities on full display in a very short amount of time. It is really hard to see and believe. I promise it is much harder to live with each day (for them and us).

My wife and I decompress after the kids are in bed. We deal with the stress and sadness. We are reminded of many things. This is why we rarely leave the house. This is why there is stress around every interaction with people. This is why we have few friends that “know” us and certainly none that come to the house. We are reminded why we have so many rules and so much structure. It’s also a reminder why we fight like hell to keep the peace. It’s also a reminder that every time we let our guard down, we are disappointed.

I feel all kinds of emotions tonight. I feel anger and lots of it. I’m not ashamed of this anger. I feel sadness. Sadness for how limited our lives have become. Sadness that having people over and leaving the house is something I don’t look forward to. Sadness that literally anything outside of our very restricted normal will fuck up the day in a major way.

I’m also sad that these kids struggle in the most normal of situations. It’s hard to see their future and have anything but anxiety and fear. There is not much they won’t struggle with every day for the rest of their lives. This reality always is starring us in the face. We are pretty good at ignoring it most of the time.

I feel stress. I feel exhausted. I’m tired of having to be on all the time. There are no breaks from this kind of parenting.

I’m committed to finding my win though. There are always wins. Today it’s actually easy to find those wins. I spent quality time with my wife and little ones and that is always amazing. I put my 3-year-old to bed tonight, which was such a sweet experience. I will miss them when I get older. I chose to get a little cardio in as well, which is always something good for me mentally.

As I type, my wife is snuggled up to me on the couch sleeping soundly. Days like today take a major toll on us. Sleep helps! We both enjoy the peace of her falling asleep on me on our couch. I know we will be ready to attack another day tomorrow. I also know it won’t be easy. In about ten minutes, we will go to bed, together. We always go to bed together. Our bed is our safe place, our place of peace. Going to bed together every night, together is something we look forward to and will always fight to protect. No matter what bullshit goes down during the day, and there is often a ton of it, we always go to bed together. Together we can get through this and live an amazing life. We know we have each other’s backs. We also know that our love is unmovable. There is no amount of chaos that can close in on us that affect how we feel about one another. We take great comfort in that strength. When we have days like this, I think of “our song”. Jack Johnson’s “I Got You”, and specifically these lines:

This weight’s too much alone
Some days I can’t hold it at all
You take it on for me
When tomorrow’s too much
I’ll carry it all
I Got You
And when tomorrow’s too much
I’ll carry it all
I Got You

We will find a way to win tomorrow too!

Parenting in a FAS World

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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/