Living Hazzardously

Little pieces of our journey with Jesus

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How can a day change the lives of so many? Or Vertigo, party of one?

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How can a day change the lives of so many? Or Vertigo, party of one?

The early morning is by far my favorite time of day, everything is waking up, stretching and yawning as the sun starts its daily pilgrimage across our late winters sky. This was just another normal Sunday morning, the cool temperatures of our bedroom calling to me as the sky was still and quiet, even Drax was calm last night. I woke at my normal time, it’s Sunday, 4:15 am. The stars seem to be just a few inches outside my window, so close I could smell the spinning colors of the night sky. Wizz… zipppp… buzzzz….. Ohh goodness, I’m going to PUKE!!!! That was how my morning started yesterday, spinning colors of stars and moon, twirling like a demented ballerina twisting on her brain piercing toes and portraying the most horrific sequence of blurring, twirling, spinning visuals, the most detestable sights imagined.

Yes, I lay in bed wishing the world were not tormenting my every thought and making my every move a sequence of gut-wrenching experiences and vivid examples of torture. It’s Sunday, I blog on Sunday mornings, but this morning was having none of that. Instead, I lay in bed… counting the time…. 4:20…4:30… 4:45… 5:15, it is now time to wake up Jess. “Hunny?” I called from the pillow “Jess? I can’t get out of bed, it’s time for you to get up” with her deepest concern as she tried to wake up. “Are you ok” all I can muster is one more word “vertigo”. My day was pretty rough, but we did make it to church and back home. 

I had planned to blog about the days that led to Jess and I making the final decision to move away from everything we knew and land on this little 40 we now call home, but today I was not able to do much more than not fall over. 

I remember the day very clearly, we were having a normal day, or so we thought. Al was outside doing what he does best, looking for stuff. We had seen a few frustrating situations in the past but today we discovered we could not keep Al safe, safe from himself. As Jess watched today unfold like a nightmare, I stood by trying to understand the un-understandable situation, she started to get weak in the knees and I tried to hold her up, and Al was thinking this was a most excellent adventure, it was so fun for him. 

Let me set the scene: We lived about 800 feet from a busy commuter highway in Chanhassen, this highway carried thousands of commuters to the cities and back every day, but the buffer of elevation and trees made our home almost invisible and certainly not effectively bothered by the busy road. It was a perfect balance of convenience and sheltered quiet from the road. Next to us was an old gravel pit that seemed more like a miniature forest, a place where Al could explore and look and find all sorts of things like melted plastic mower housings, melted aluminum window frames, piles of wood, trees and rocks scattered around the winding path that lay just below the abandoned railway, but now was actually an abandoned bike trail. It was surprisingly quiet, and solitude was never begging but rather it was easily found with a comfortable spot in the backyard. 

This particular day, Al had the great adventure planned out and was implementing this marvel of fantastical fantasy. As he snuck into Jacob’s room and poked around in Jacobs’ surprisingly well-organized trunk, Al found exactly what he needed. He quickly snatched it up, tucked it into his clothing and slipped unsuspectedly out the door and down to the highway where he would make his great mission a completed quest for this adventure of great delusion. After he was done, or perhaps because he had a sense that he should stop, he slipped back into Jacob’s room and returned this great prop that was so well suited to his wondrous fantasy, now being complete in this quest, Al was back outside, and we would never know what he had been up to… or so he thought.

A few minutes later, this fantasy played out to Jess and me, she was almost ready to collapse. You see, this item that Al took was a plastic airsoft pistol (not supper real looking) and the way we found out was a swarm of 9 police cars screaming up the driveway and chasing Al down and cuffing him. All the time, Al thought he was the “Head of the Bloods and the Crips.” (Rival gangs in Las Angeles Ca.) For some unknown reason, Al thought that he was the leader of these two rival gangs. The Cops were chasing him down because he was waving a gun around at cars on the highway during rush hour.

I remember the look on Als face as he sat in the back of the car, admitting to this and so much more, like his gang colors (a sweatshirt covered in marker) his bandana that was part of his “attire of ganging stuff” and his communication with this gangs by means of microscopic messages written on tree bark by the highway. 

I remember holding Jess that night and I remember these words… “I can’t keep him safe here!”

We bought a 13-foot fiber-glass camper and started driving, looking for a new home, a safe home, a quiet 40 where Al could finally be away from the people’s stares, the hustle of the cities and be safe when life gets out of control and starts to control what we think. I had bought that little house in Chanhassen to live out my days as a bachelor, as a grumpy old man working on my motorcycle in my living room and sleeping whenever I pleased, but now, I am a stepdad and moving into the middle of nowhere to keep our Al safe, with no regrets, we moved.

I am pretty sure there is at least one gray hair with Als name on it, somewhere up there, as few as there are nowadays. My hope is to offer someone encouragement that God is in control, and If you dont feel like therre is his presence in your life, ask him today for his comfort.

May God’s love for you guide your footsteps and fill your heart as much as mine is filled tonight as I sit and finally scribble out this post.

AHHH SWEET ROMANCE!!

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AHHH SWEET ROMANCE!!

As we headed into Home Depot for our very first time, Sam tagged in behind us and Jacob walked beside us but Al blasted the path and was super excited with all the lights and Christmas decorations. The year was 2014 and I was just learning the nuances of this family dynamic. It only took me about two or maybe three trips with Al to discover my massive mistake that day, a mistake I see happen over and over again as people meet Al the first time. 

As we started about the store for a simple trip, or so I thought, I sensed that I had already made a mistake, but I had no clue what or how big it was. You see, I thought I knew how to react to Al and his childish excitement he displayed at the lights. Jess had already started the “regulation” process with Al, but I was just so happy that Al was excited to be out that I perpetuated the excitement, just a little. What I didn’t know was why and how…. Like so many others when they meet Al, they see him as a happy, sweet and kind person with great manners, which is all true but with a huge “but” attached to that statement…. Al does not self-regulate, he amps up and if left unchecked, the obsessive side takes over without notice and he becomes quickly “out of control.”

What do I mean out of control? We see him at church, and he is always so sweet and kind and respectful! What you may not see is lying in wait just under the careful desire he has to show respect, it can turn in a moment and the next thing you know, we are swiftly exiting the church without saying goodbye to anyone. Jess told me once “You just don’t know how many times I have had to leave somewhere because Al was out of control, we would just drive to a park or somewhere that the police wouldn’t get called on us and Al would be screaming and smashing stuff, a couple times I had to call the police or bring him to the police station!”

It may seem like he is simply a sweet young man that is so kindhearted, but the truth is, he cannot control his thoughts alone, he needs constant oversight, redirection and reminders to keep him safe and rational. To be honest, I was not prepared to be a stepdad to Al, he is so much more than I thought I was signing up for! I can honestly say I do not regret being his stepdad. Even after being insulted, punched and kicked… he is still my boy, and I love him.

And why did I title this post sweet romance? Simple, it’s not romance that blinded me of the role I was taking on, it wasn’t Jesse’s pure heart and loving smile… it wasn’t romance that kept me involved…. It was God giving me a new heart, a new reason in life, a “repurposing” if you will. Although Jess certainly played a role, and we are still very romantic, that’s all great but if that’s all it was? I can now honestly admit I would have turned tail and run for the hills like any other sane single man these days. I was “twitterpated”, sure, but it was going to take more than that! God gave me a new life, a second chance, a new beginning… so that makes three times I have been “born”, I guess. 

The days are long, but the years are short. 

Please follow this post as I detail how I became the stepdad to Al and Sam

Embracing the New as an Autism Mom

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Charlie, Al and I after Al’s baptism in the lake in September, 2018.

 

It is hard for me to believe that it was less than four years ago that Charlie and I got married and started a new chapter of life.  We both had years of practice in what NOT to do in marriage. We both had years of practice on how to screw things up and make bad choices.  Yet, through the grace of God, we were both given a second chance at sharing life with a best friend.

Charlie shared last week on his experience of becoming an autism stepdad.  It was interesting for me to read because, quite honestly, I have been an autism mom to Al for almost 21 years and to me the abnormal often seems just plain normal. Charlie is an amazing Dad.  He has done an awesome job with his three biological sons, and he has worked really hard to understand both of my sons and to be an awesome stepdad to them. He has really helped me to see Al with new eyes because I have become blind to much of what he does that makes him special. Charlie has helped me to see out of the box and tackle behaviors with fresh vision and perspective.

Al and I have had tough years.  The season we are currently in is full of such peace that I am overwhelmed with gratitude. The middle and high school years were the WORST for us and for those out there who are in that season now, I want you to know that there is HOPE.  It doesn’t feel like it when you are in the middle of it, but things do get better.

Al was diagnosed with autism at the age of five when his speech therapist, occupational therapist and preschool teacher all came to us with concerns.  My ex and I were in denial. We knew that Al had speech and fine motor delays, but we thought he would grow out of it. Al was my first child and I didn’t pick up on the signs right away.  He was a happy, chubby guy and I was a new mom trying to figure out how life worked with a baby. When he qualified for early childhood special ed services, I still believed that he would just grow out of his delays.  After receiving the official diagnosis of autism and doing some research, I soon discovered that although Al would gain skills, he would always have autism and it would always affect his ability to process information and communicate.  It would also always affect his social interactions and emotional intelligence.

As Al got older, we tried every kind of therapy imaginable.  Nearly every day was spent hurrying from appointment to appointment with little brother Sam in tow.  My life became consumed with meeting Al’s needs and trying to help him gain the skills he would need to function in life.  He made great strides in some areas, and in others he seemed stuck. I could handle Al’s language and processing deficits. I could handle his gross and fine motor delays.  What was the hardest to handle and manage were the aggressive behaviors that Al began to exhibit in late elementary school and which continued to increase throughout high school.  It was an incredibly difficult time for all of us and resulted in Al being hospitalized in the mental health unit at the local hospital four times and being shuffled between six different school environments in four years.  My first marriage ended during this time and Al’s younger brother, Sam, went to live with his Dad, spending opposite weekends from Al with me, in order to maintain his safety and some semblance of sanity in his day to day life.  

adult alone anxious black and white

This time in my life was emotionally and physically exhausting and I lived moment by moment, constantly on edge, just trying to survive. I have read that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and I believe that because I have lived it.  I have many stories. Few that I want to repeat and none that I want to relive. I just thank God every single day that Al’s level of aggression has subsided.  I thank God everyday that Al is not delusional and threatening to hurt people. I thank God everyday that I can bring Al out into public without fear of the police being called or a fight being started.  

Charlie came into our life near the end of this time.  He experienced some of the very worst moments and he did not run away.  I used to say that I would never remarry because no man would possibly be able to handle Al.  Then came Charlie. Charlie has been so good for me and Al. When he married me, he knew that my boys and I were a package deal. Even though he doesn’t always understand, he always tries to.  He remain calms. He doesn’t try to bully Al into behaving. He observes and listens and helps and brainstorms and encourages and reinforces. We function as a team and Al knows this. Al respects Charlie. He loves Charlie.  

Here are my suggestions for any autism mom who has experienced divorce, but has found a new man who wants to be her best friend for life.

  • Make sure your future husband is committed not only to you, but to God. No blended family can survive without God at the center, with or without children with special needs.
  • Make sure your future husband is committed not only to you, but to your children, through thick and thin.
  • Remember that you have years of experience with your children, that your new spouse does not.  Don’t expect him to just “get it”.
  • Your husband comes first and you and your spouse are a team.  Do not favor your child over your husband. Do not take sides against each other.  If you disagree on something, take time to discuss it away from the children. Remember: You are not enemies. (NOTE: This does not apply in the case of any kind of abuse!)
  • Don’t assume your spouse does not know anything because he is new to parenting your child.  Stepparents can see things that you may have started ignoring or given up on years ago. Fresh eyes can bring new insight and wisdom.  Be willing to accept feedback and advice.

Charlie and I are still fairly new to this whole blended family thing. Although we love each other to the moon and back, there are times when it is just plain hard.  Add special needs to the mix and at times it can seem impossible. Our faith is the glue that holds us together. Without God, we would never be able to navigate the stormy waters without drowning.  Don’t try to go at it alone. Rely on God and reach out to a community of believers to lean on in tough times. Feel free to reach out to us. We don’t know your story, but we would love to listen and help where we can.  You are not alone. God is good.