Living Hazzardously

Little pieces of our journey with Jesus

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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.  

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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.

WHO I WAS. becoming an “autism stepdad”

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It was a cold January day in a small house located in Chanhassen along the Minnesota River Valley . She was dressed so pretty and we had spent so much time getting to know each other that we felt we had always known each other. I set up a scavenger hunt… notes hidden in places with clues, clues that led her from inside, to outside into the garage and finally into the upstairs of this new house I was “remodeling”…. the room where we would eventually spend our nights together as a man and wife. I’m not sure I really knew what was coming my way, in fact, I HAD NO CLUE!

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She called me at work and told me she had to take the day off…again. Jess went on to explain, “I thought something was a bit off today and when I opened the kitchen drawer to get a knife, they were all gone. I’ve called the school and I am headed there now to meet the bus when he arrives” Yes, this played out one morning. How do I respond to this? What is the right way to handle a young man of over 6′ tall filling his backpack with kitchen knives and heading off to school? Not just one knife but all of them. How do I reconcile this in my life of fatherhood? He isn’t “psychotic” or “deranged” and he really doesn’t want to “hurt” anyone. So why would he do this? He isn’t truly aggressive, if you get inside his thoughts. He isn’t out to get anyone… so why? (I will answer this question later. The answer may surprise you.)

Al was a high school student in Shakopee and I was just getting to know him. He was always excited. It was as if he gained energy from chaos…. and that is opposite of my previous world where chaos was put into order, not order put into chaos. Some days were good, other days were … well, how can I put this? The most intense situations known to man…but on steroids! (Figuratively speaking, of coarse.)

Jess and I prepared to merge our very different worlds. She was living in 1200 square feet and my house was 2800 square feet plus a 20×40 garage stuffed with junk from the last 20 or so years. Fitting this all into our “new” 980 square ft home…that was just the pragmatic side of space. That was the easy part.

The first stage of our lives was simple, get married, move our stuff, arrange our home and make it all work…. Simple enough! Lets do this! Alex, Jacob and Al all get along great. That’s a blessing. Alex was a typical high school student that just wanted to get out into the world as a HS grad, enter boot camp a start his life away from dad only one month after we got married. Poof! Easy! Jacob was a bit younger and needed a bit more management by his father… Jess and Jacob hit it off from the start. This was nice to see, no conflicts, mutual respect and a likable daily routine. So by now you may be thinking,“This is a nice blog post,” or maybe you are thinking, “I should stop reading this blog.” I hope you keep reading. I am setting the scene of our typical blended family with no real personality issues.

You see, I love Al, like my own biological sons, but I wasn’t prepared for what I didn’t know. I wasn’t aware of the challenges. It was hard to learn what autism really is. Sure, read about it, learn the science behind autism, but you don’t know until you have lived it. It’s not bad, it’s not good, it’s DIFFERENT! So much different and so impossible to truly understand how different, until you have lived it.

My history is long. I’ve raised three boys. I’ve been told I have done it well, by God’s grace. I have dealt with troubled youth, Downs Syndrome, ADD, ADHD, rebellion, complacent kids and mainstream kids. I have seen nearly everything (BAD AND GOOD). As a special needs bus driver, a chaperone on field trips with special needs, Den leader, Cubmaster, Scoutmaster, Youth Group leader, prison ministry participant… the list is long in the area of “boys to men” concepts. My heart is for raising boys to become men and for men to be Godly husbands, friends and leaders.

So what can I do for this young man? I thought I had a good handle on this before we got married. I thought it would be difficult at times and rewarding at others. I thought I was prepared…. I THOUGHT! Let me take you on one short journey. Let me describe a small part of my experiences and bring you into the world of autism from my perspective.

Suppose you are having a conversation with your wife, you know, a private conversation, behind closed doors. It could be about anything. Jess and I had conversation that was about putting an addition on our house. Al overheard a few words, nothing bad, but a short snip-it of words. Why? Heightened sense of hearing? Yes. Heightened awareness of conversation? Yes. Intentional eves dropping? Yes. No big deal, right? I mean so what if Al heard a few words like “cut” or “make” or even “saw”… until it enters the mind of this young man. To him this is perhaps the most violent form of torture he can imagine… to hear a saw. But he has never even heard my saw. He never experienced this in his past. EVER! But now, for the next two minutes, that turns into hours, that turns into days, that turns into weeks, that actually turned into months. YES, MONTHS of the same question, over and over. Sometimes reworded but still the same question and comments. Things like, “Are you going to use the saw today?” perhaps 10 or 20 times in an hour, then repeat. Or, “I don’t want you to use the saw” even when there are no plans of using the saw for weeks. And then repeat every few minutes all day for weeks. Just over and over. The same question repeated within seconds or minutes but sometimes hours, if we are fortunate.

This can manifest in remarkable ways for reasons we can never know. Imagine going to work, and the guy in the next cubical plays music, now imagine its the same song all day, repeated. Now imagine its the same 10 second section of one song hundreds of times a day. Or apply this to a movie. Or something found in the yard, a small chunk of wood that has been imagined to have ancient carvings from natives, a carving so small that you would need a magnifying glass to actually see what Al can see. HEIGHTENED SENSES! IMAGINATION! CONTINUAL THOUGHT LOOPS. They have come up with scientific names for all of this, fancy names that are tossed around in the special needs community like pennies into a gumball machine.

I love our Al. I love him for so many reasons. He is funny, fun and exhausting. He is different. I have learned so much, and the more I learn, the more I realize how much I don’t know. I can’t tell you I understand it. I don’t. I can’t. But I can do something. I can change to meet Al where he cannot change. I can meet his needs and help him become the best man he can be. I can teach Al how to overcome a majority of his anxiety. I can be there for him, provide for him, buy him the things he needs, help him develop new skills… I can be a stepdad to Al.

I promised you an answer earlier. The question is, “Why is Al like this?”

The answer is more complex than you may know but to summarize this is simple.

If we were to relate Al to a computer operating system, the answer would be easily stated as follows: “Al is not a malfunctioning operating system, but rather a totally different operating system.” He is operating exactly how he is programmed to operate. Continuous loop feeds… with base computer language that may appear like this “if (a=b) {repeat}”. He finds comfort in “knowing”. He watches the same 10 second video because he can know what will happen. This is where he finds familiarity and comfort. It is where he finds compatibility and understands his world. Like I said, it’s not good. It’s not bad. It’s just different!

My journey is mine, your journey is yours, I cant know yours and you cant know mine… but together, we may be able to help each other in our journeys. My Jess is always interested in hearing about my journey and is in many ways surprised at what I say, not because its bad or good but rather because its so normal in her journey and so new & different for me.

May our God richly bless you today.

Letting Go

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Long before I became a follower of Jesus, I started going on a yearly serenity retreat weekend at the Franciscan Retreat House in Prior Lake, Minnesota.  The retreats were open to anyone in AA/Al-Anon and although a Catholic mass was held on Sunday morning, attendance was completely optional and there was no faith requirement.

I loved the retreats.  Father Howard or other guest speakers would teach lessons on the 12 Steps from the AA Big Book and we would break into small groups and sit in circles throughout the halls and library of the musty retreat house and talk about our hurts and struggles with complete strangers.  There was something mystical to me about the retreat house that at the time captivated me.  The candles, the quiet, the long, underground hallway with the Stations of the Cross, the secret statues hidden along the path in the woods, and the benches scattered all about the grounds were to me symbols of the peace I felt at this place of rest.  I understood nothing about the Catholic faith or the true meaning of the stations and statues, but I felt at peace in the rooms and on the grounds.  This is where I first started to pray and journal and listen for the voice of God. A God that I didn’t yet know, but that I felt drawn to all the same.

Can you recall a time in your life when you heard God’s voice so clearly, that there was no denying it was God?  I have had a few of those God moments, and the first occurred at one of these serenity retreats.  My son, Al, had just been diagnosed with autism and I was struggling with the shock, fear, guilt and confusion that comes with the diagnosis of disability. Al was my first child, and we didn’t pick up on the signs right away.  In fact, Al was five years old before he was diagnosed with autism.  I felt tremendous guilt over not recognizing the signs and ignoring them once they became evident.  I now know that I was in denial.  I wanted to believe that it was nothing.  That he was just a little developmentally delayed. That he would catch up.  When I heard the word autism, I had no idea what it meant.  I spent night after night reading everything I could about it and what therapies or medications would fix it.  ABA, PT, OT, Speech, special diet, aquatic therapy, horse therapy, supplements, chelation…I was flooded with information and suggestions and completely overwhelmed.

As I sat among the circle of chairs in the little library at the retreat house, waiting for my turn to share, all of the fear and anxiety welled up inside of me like a geyser ready to erupt.  Suddenly, my attention was drawn to the woman who sat across from me.  She was sharing about her daughter who struggled with drug addiction.  The hurting mother had spent years trying to fix her, but God had recently spoken to her and told her, “I LOVE HER MORE THAN YOU DO.  LET HER GO.”

As she spoke, it was like the whole world went silent and the lights went out.  All I heard were those words in my head, and I knew at that very moment that God was speaking to me through that stranger.  I didn’t know her name then, and I still don’t today, but I know without a doubt that God used her to speak into my heart  that day.  God loves my son more than I do.  To some, that may seem so obvious, but I did not know God.  I did not know John 3:16 For God so loved the world, that he gave his only Son, that whoever believes in Him should not perish but have eternal life or 1 John 3:1 See what kind of love the Father has given to us, that we should be called children of God; and so we are.  But that day, God spoke to me and I knew that because He loved my son even more than I did, he would be okay.

It is hard to let go.  I can’t tell you how many times since that day, I have grasped onto the truth of those words.  I have had to remind myself time and time again that God loves my children more that I do and even though I want to protect them and fix them, I can’t.  I have to let them go to God and trust,  Trust that God is faithful and God is in control and that God works for those who wait for Him (Isaiah 64:4).

I was reminded of that today and thought maybe somebody else needed to hear it.