Living Hazzardously

Little pieces of our journey with Jesus

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Dear Mr Cellophane, Please refrain, Mr Cellophane.

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Dear Mr Cellophane, Please refrain, Mr Cellophane.

Her scream pierced the night as if it were a tornado siren!  Shattering the silent calm with shrieks of terror. The puppeteer, now in full control, reaping, claiming & taking over her very will, leaving nothing untouched. Like a tornado when it hits a small town. TERROR ON EVERY SIDE. Quick! Everyone hide! Head to the basement! Under the stairs! Into a closet! Into safety…  But today, there is no place to hide, no safe place to be. As if we sat in a vast open field. We sat on the edge of our bed, so horribly unprotected, the “siren” wails, we can’t run, we can’t hide, we can only sit here as the storm devours us. It swallows our life in one large gulp, one devastating statement, “He didn’t make it”. That scream was only one word, yet it said all there was to say. That word will forever haunt my memories…. “WHAT”.  

I watched a woman cry out in pain on tv after she had the truth revealed to her in real time about her beloved child and I too cried. I was there when my father died and I watched my mother cry out in pain when my sister died in a tragic crash. I was with my mother the day she passed away. I sang at the funeral of my niece who was murdered. Death is real and it is inevitable! So why do we react the way we do? Everyone is going to “Kick the bucket”. Is it a surprise?

When death enters the life of a friend or relative, how should we react? Should we offer long statements of how we know what you are going through? Perhaps we should simply connect at the beginning with hugs and attention and slowly drift back to a settled life we had before this event? Maybe we should just do our best to ignore It and not even acknowledge the situation? What is the best way to react? What is the proper way to connect? Is there a wrong way? I personally think this is a much more complicated question and it depends greatly on the relationship.

When my step son Sam passed away that August night, I started on a journey that was “unfamiliar” to me. I had previously experienced plenty of death in my life, I knew the attention I should expect. The responses people give in different situations can vary more than the East is from the West… BUT I did not expect this : “Dear Mr Cellophane, Please refrain, Mr Cellophane”. I experienced a form of disconnect or perhaps a better description is invisibleness in the months that followed. It was as if the expectation others  had were more like I had lost a distant third cousin that I only met once about 20 years ago. This not only surprised me, it made me feel like my relationship with Sam was insignificant and meant little to nothing. I could only assume this was simply because I am his “step father”. 

In the months to come I heard statements like “Ohh this must be so hard on Jess and Al, do you know how his father is doing?” or “Wow, this must be so hard, How is Jess handling this?” or maybe “I remember when(insert a favorite memory) happened, Does Jess need anything? You know we are always here to help, whatever Jess and Al need, just let us know!” I started to feel invisible and I started to feel like I didn’t experience the death of a child, now granted, he was not my blood child, and I don’t want to downplay that role. I am also adopted into a family, the family of God and God thinks of me no less than his “blood” child. 

It wasn’t until months, well actually about a year later that I found a man who also was ‘Mr Cellophane”, he too was the step father to a child that ran ahead into heaven… and he actually knew what I felt. For the first time since Sam passed away, I understood I was not crazy in this area and the feelings I felt were very similar to his… he had raised this boy of his from a very early age… he too was invisible.

I am not looking for “pity” and I certainly don’t want attention but I did find it was hard and for a brief moment in time I think I can understand a bit of how God may feel. When God is not given the credit due him for being our Father. Ohh I know, it’s different, I’m not saying I am God or that I know what it’s like.. But it got me thinking… Do I give God the attention he deserves for stepping into my life and being my step father? Do I recognize the commitment and dedication he has given freely to me? How about you? Do you need to take a second and credit God what is due to God for being your GOOD STEP DAD? 

May God bring you peace today

Livinghazzardously for God.

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.