Joy no matter what. A blog by Deanne Nelson.

Blogging, Speaking, and Writing | Jesus and Autism | The Nelson Family Journey

For Now We See In Part….. April 1, 2013

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At three years old our son Nathan spent many hours daily in therapy…physical therapy, speech therapy, occupational therapy, as well as one on one instruction in applied behavioral analysis. The days all seemed to  blur together in a sort of misty autism haze. The ole’ mini van wracked up thousands of miles in those continual loops around the valley of the sun. We were living in Arizona back then. While I felt certain that all of the therapies were inching him forward in skills, I would soon come to know that the golden nugget of all therapies for Nathan would be music therapy. His MT gurus were Rich Maston and Kathleen Walsh, and these two creative therapy geniuses had a way of pulling things out of Nathan that no one else could. I loved those therapy sessions the most of all, and I even got to sit in a small room with a one way window and watch every interaction. I shed many a tear in that little dimly lit room. I cried for every small victory and I found myself chatting away with the Lord from start to finish. The memories of those sessions will be me with always, and as it turns out, Nathan has held on to some of those memories as well.

It was a usual Tuesday morning as Nathan and I made our way into the College of Nursing building at Arizona State University. Rich and Kathleen’s therapy sessions were held in a room on the third floor. I can even picture now the very hallway, the very room, and yet there are some details that I failed to notice entirely. One such critical detail was the fact that there was a fire alarm pull just to the right of their entrance door, and just at the right height for little boy hands to grasp. Hard to believe that the first time I took notice of it was as my almost four year old son was mid-pull. NO NATHAN!  Too late. What happened next played out in painful and vivid slow motion. First came the alarms that filled every nook and cranny of that five story building. Oh yes, those alarms were piercing to typical ears, but for a sensory sensitive child like Nathan, it was pure trauma. This same boy would fall apart at the unexpected cry of a baby in Target. To be sure, it did not go over well. I think I heard my palpitating heart beating louder than the noxious sirens. He couldn’t even cry at first. It was like the shock of it all paralyzed him. I went into my best Carl Lewis mode and scooped that boy up and made a dash for it. The stairwells were ablaze with thunderous echoes of college students and faculty making their way out the building.  I tried to convince myself that Nathan’s wails and cries were possibly being drowned out in the chaos. As we muddled our way to the exit, I could hear some of the students questioning what might have happened, and if there was a real fire. Oh yes, the real fire was coming up behind them…a pint sized boy with autism who was lit up in full I have lost it mode. By the time we got out the exit, I was disheveled and sweating. I vividly recall feeling exhausted in every way, but the emotional drain was what kicked me the hardest. It was humiliating to look around at the sea of students who had to evacuate the building on account of us. It was humbling to hear them whispering, as I felt certain that arrows of judgment were being aimed directly at us. I focused all of my efforts directly on Nathan, as I feared to even look up at the many faces sure to be staring at this clumsy mom and her unruly son.  It was not long before everyone realized what had happened. It was the boy with autism who pulled the alarm…yes indeed.

Someone give me some ruby red slippers!! There’s no place like home. There’s no place like home. I think all autism parents should get one free ‘do-over’ card a year. When such social calamity strikes, one can wave said card in the air and be transported back home to bed…the safe haven for calamity. Tantrums that lack bystander stares are much easier to take. Can I get an amen??

Within minutes two Tempe Fire Department trucks came careening into the parking lot. This distraction would be my chance to just sneak away and call it a day. I told Rich and Kathleen in tears that we would be leaving, but they were too smart for that. With love and firmness, they both said ‘NO.’ If we left, then Nathan would soon learn that such behavior and tears would get him out of following through with therapy. And so I cried, he cried, but we were staying. Maybe we could have some fun watching the firemen and the trucks…or maybe not. Nathan would soon start to get restless and I found it was hard to contain him well standing up. I was still unnerved about it all when I instinctively chose to sit down on the grass beneath us. My plan was to sit with him while wrapping my legs around him in the ‘you aren’t going anywhere’ jujutsu move. It would just so happen that it had rained the previous night in AZ….one of the five days out of the year!…and the grass my behind landed on was soggy. I could feel the moisture permeating through my pants, but there was NO WAY I was getting up from that muddy ground. I would sit like a fool and endure it, as I felt certain I could not take one more ounce of humiliation.  I could hear it already, Did that mom of that autistic boy soil her pants??  And so there Nathan and I sat, amidst the mud and the tears. Has anyone ever been there and done that??

Of course, both Nathan and I got through that trying scene. In fact, that trial would come to be the very event that all other unexpected autism mishaps would be compared. It became my endurance measuring beam in a way. Crying fit in the middle of the grocery store at a sudden sound??…No problem..At least the fire department did not have to get called out. High pitched shrieks when different pieces of food touch on the plate??…No worries at all. At least we did not have to evacuate hundreds of people from a building. On and on the comparisons would be made, and in time, the fire alarm incident became a source of laughter and encouragement, not just for us, but for others as well. There was even a time after we moved near Charlotte NC that another boy with autism pulled a fire alarm at our church. They were visiting and the mother was horrified that the church had to be evacuated. I could see her crying and aching just to leave. I knew exactly what she was feeling and we laughed and cried together as I shared my very similar story with her. Sometimes people need to feel that they are not alone in their struggles. Aren’t we blessed to be trusted to struggle in this life? For it just so turns out that in struggle, we find strength, endurance, and perseverance if we can learn to trust the Lord through it. Here is a colossal promise-  James 1: 2-4..2′ Dear brothers and sisters,[a] when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.’  And we then can become a voice of hope for someone else, which is a profound gift. How can we touch another struggling heart if we have not struggled ourselves? I have long since thanked God for that fateful fire alarm day back then, and figured I had learned what he had intended for me to learn. It would be another couple years before he would reveal even more to me. I had only seen a very small part.

As Nathan, now ten years old, and I were sitting at our dining room table a few weeks ago, I asked him if he remembered anything about Arizona. Now he still struggles with communication delays and he gets off topic quickly. It is a challenge to have a conversation with him, and so I posed the question, but had very little anticipation of a meaningful reply. I just about fell off my chair at what came out of his mouth. He said ‘I remember that I pulled the fire alarm at Kathleen and Mr. Rich’s and all the people had to leave. It was my fault.’ !!!!!!!!!!!!!!!!!!!!!!! WHAT????  I was flabbergasted beyond words. I stared at him in total disbelief. I had never spoken to him about it. Not only did my son speak in clear words of a time that I had always assumed he was somewhat clueless to, but he recalled how his actions affected others. This is so opposite of what is expected and seen with autism. The hallmark of the disorder is a type of self-centered awareness, and yet here was my beautiful boy recalling this event in such a selfless way. I could scarcely take it in. I had so many questions, but he was essentially done with this conversation. I had heard enough to fill my heart to overflowing. I had always assumed he was not comprehending much as a young child….that he was lost in his own head. He had so few words and seemed to stare off in his own world. I used to agonize over how to reach him. I would envision Mt. Everest, with Nathan one one side and me on the other. How in the world would I get to him?? But then here we are some seven years later and Nathan blurts out a few words to reveal that he indeed has always been there. I wept openly many times that night. The enormity of it still captivates me. I was busy erecting gigantic mountains of impossibility back then, while the Lord God was taking Nathan’s hand over easy terrain. Yes, I had given much focus to the struggles for too long. God was aware of so much more, and of so much more to come. Dear God, you are mighty and powerful beyond my comprehension. I pray to live with a heart of anticipation over what you are doing and what you are revealing next.

What is it in your life that has caused your flesh and heart much pain and grief? For those who put their trust in the Lord Jesus Christ; within those hardships lie the seeds of abundant blessing. In time, those seeds will bear powerful fruit that exalts the Lord. What greater calling in life is there than to glorify the Lord? Is it a fatal and painful diagnosis that you bear? A broken and scarred relationship? An addiction or bondage that has held you down for years? We can be completely assured that every shred of dust and ashes in our lives today will be traded in for beauty. We must grasp on to the fact that we are only seeing a small glimpse of the glory to come. I have heard people say that once they see God, they will have a few grievances to discuss with him…a bone to pick if you will. Not so. In his glory, there will be total awe and praise, and every pain will be vanquished. Oh, if we could only trust him for what is around the corner. If we could only lay down every burden at the foot of the cross and not turn around and pick it back up again.  We must trust him that his ways and plans are far greater than ours, and that we see only a small glimpse of the masterpiece that our God is creating in and through our lives. Trust him today.  He is not done.

1 Corinthians 13:12…..Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

Job 26:14…These are just the beginning of all that he does, merely a whisper of his power. Who, then, can comprehend the thunder of his power?

Here is Nathan visiting Mr. Rich and Kathleen in AZ about a year and a half after our move to NC. What a trio they were!AZ visit!!!! 015AZ visit!!!! 014

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2 Responses to “For Now We See In Part…..”

  1. Dusty Says:

    OK….Just finished reading this entry and I’m sitting here at my ‘puter soggy with tears!! You are such a talented writer my friend…this blog of yours will bring encouragement and inspiration to anyone lucky enough to read it!! You’ve even inspired me to start my own blog…trying to chronicle my life, my stories of how Jesus got me from where I was to where I am….wish me luck!! and God Bless!!
    Love Dusty


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