The Autism Times

Maturity comes when we develop faith beyond the why of pain—why did this  happen to me?  You must believe in the Who beyond the why?  Beloved, sometimes there is no answer from God beyond the why on this side of eternity.  Sometimes, all there is is that place I call faith where you are invited to live for an indefinite amount of time with all your questions and your God.

Sessions in Pain pg. 148

Faith is a place of peace. Faith holds our “whys” safe and secure in the arms of our Lord, who loves us passionately. Faith is our hope, and His Word promises that hope, in Him, will not disappoint (see Roman 5:3-5).

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Having a child with autism can appear to be a sentence to isolation. You must carefully schedule the places you must go and the things that you must do to conform to the demands                 of this disorder. We live a gated  life that has limits and boundaries of time and space.

God has helped me to see that this gated life is also the field in which He has called me to work. The many limits of my field has brought with it the solitude I needed to reflect, grow, and write the messages sent to my heart that have encouraged others. God defined a field for me to minister His love to my family, friends, and others. He showed me the countless possibilities in my field. Limits will transform before God – with Him all things are possible.

Through the years I have learned to love my field for it has brought me so much strength, peace, and joy!  I no longer stress over the small things and I see God’s love and blessings in things that others are blinded to. I was once like them until He defined my field. Beloved, let God define your field – it is beautiful!

He place my foot upon a Rock and established my goings!

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I recall working with a child diagnosed with autism who had learned to test every person who tried to teach her with profound behaviors. She would spit, scream and fall to the floor when she was asked to do a “non-preferred” task. Occasionally, during her tantrums she would look around to see if anyone was watching that had seen her on the floor and feel sorry for her. But everyone within ear shot knew not to come and console this behavior. When she would quiet down I would ask her to do the task again which would send her back into the full blown tantrum. Finally, after 15 -20 minutes of these rounds she would look up at me, as I was ignoring her screams, and simply say, “K” (short for “okay”). She would then carry out the task and we would move on to the next activity.

These episodes were such a clear and truthful depiction of how we interact with God. He will ask us to do something and we will spit, scream, cry, and even fall to the floor.  Then we will present ourselves to others wanting their sympathy to support our non-compliant behavior. But our Heavenly Father is faithful in our training,  and stands true to His instruction until we come to the place of saying “K”, and complying with His good plan for our lives.

God wants to give us His best and greatest blessings; but He will not give it to the untrained and non-compliant child. He knows the future of the non-compliant.

And I am sure of this, that He who began a good work in you will bring it to completion at the day of Christ Jesus (Philippians 1:6 ESV).

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Autism in the family forces stability. It forced our family into set routines,  therapy schedules, and caregiving responsibilities. At first I resented these changes because it meant I would have to commit to daily tasks that I hadn’t planned on; but in time I discovered there was a power in this stability. This stability was good for everyone in the family. Everyone knew what to expect each day and they found a comfort and security in that. It is like how we feel each morning when our Heavenly Father faithfully sends the sunrise. We peacefully walk into tomorrow knowing He holds the plan of it in His hands.

In contrast, instability brings,  insecurity in children and frustration in adults. It is like a tree that is constantly being transplanted. Such a tree will never grow to be lush and strong. Its trunk will never broaden as it should, and worse of all it may never produce fruit. Many families live like this.

Embrace the gift of stability that has been forced into your life. Cultivate it and produce the fruit of your life!

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During this Easter season one the moms at our center shared with me a picture that her son with autism drew of Jesus Christ. He drew Jesus and the Cross as one entity. When I first saw the picture I laughed as I understood how our children think in such a concrete manner, but later I began to think about the powerful message that this  picture captured – the commitment of Christ to bear the the Cross for the sake of humanity – He was one with it!

The picture also spoke to me of  all of the many parents and caregivers that bear the “cross of autism” with their son or daughter everyday. When we received the diagnosis of this lifelong disability, we grieved at first, but then the love that we had for our child brought us to a place of total commitment – we would lay down our lives for this vulnerable human being that we loved more than our own lives.

Just as many people may wear a cross around their neck as a reminder of the beauty of the commitment Christ made for them, we can be reminded in our daily sacrifices of the beauty of our commitment. God sees our lives everyday. He has entrusted us with a special life and just like His Son we are compelled by love to carry out this great commitment.

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 I remember one day  picking up my daughter up from middle school and her brother, with autism, was in the back seat having one of his tantrums. As I let down the window to call her name everyone could hear his screaming. I could see the embarrassment on her face as her friend asked, “Is that your brother?”

Kristen did not answer her but just slumped into the car and we drove away. I tried to explain to Kristen that every family has issues to deal with, one of  ours is autism. I told her that the whole purpose of family is love. The beauty of Love is that is  grows and thrives in adversity. It shines within the challenges of life. I don’t know if she understood what I was saying that day but years later I realized she got it.

Kristen has grown into a compassionate, young woman with a sensitivity to others. This is something that cannot be taught in a classroom or through therapies – this is something that is learned as we walk through the valleys with the ones we love. Siblings of children with disabilities often have a hard course to walk. They have to choose over and over to embrace or deny their brother. I hope they learn what our family has learned that there is a secret gift from God in keeping your brother. It is called “compassion”. This beautiful gift tenders the heart for the rest of ones life.

Autism did not define our family but it did help develop it into something strong safe and precious . We learned what really mattered  and what was just fluff.

I believe in some ways the siblings of children with disabilities are chosen for this special training as it leads them to their great destinies. They have an insight into compassion that can help many others.

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I’m sure many parents who have children with autism have an “airport story” or a rattling story of traveling with their child with autism. This is such a story.

In November 2005 my family and I decided to travel by plane to Atlanta for Thanksgiving. Matthew, my 10 year old son diagnosed with autism, had been on a plane several times before, therefore I had no great anxiety about traveling with him once again.

I was excited to go as my mother and other family members lived in Atlanta and we have not seen them for several years. When we arrived at Atlanta’s Hartsfield – Jackson International Airport I noticed as we walked to the escalators that there was a video store. Now you have to know that my son Matthew is obsessed with animated DVDs, videos and books. As we were walking to the escalators on arrival I felt him pull from me toward the store, but I was able to pull him back next to me and proceed on to the escalators.

We had a good time in Atlanta and then day came for us to return to Denver. As we were walking through the airport, I was busy with the memories of the previous days and I failed to hold on to Matthew as were walking together down the concourse. Matthew seemed to be in the flow of the walk therefore I saw no reason for extra caution, but I forgot about the video store! His sister, Kristen who was 11 years old, was walking on the other side of him. With no one holding on to him he saw his chance; and slipped away to escape before I could pull him back. Matthew made a run for the store.

As circumstance would have it, the person running the store had decided to take a break and had pulled the gate almost close. But Matthew, who was a master at obtaining DVD’s, noticed the 2 inch crack that revealed that the gate was not locked! He proceeded to pull the gate open, get behind the counter and pull DVD’s off of the rack. He locked on to one in particular, “Madagascar”.

As an experience mom of a 10-year-old with autism (LOL) I learned how to “go packing”. I had many items in my backpack to entice Matthew to comply when we were in the community. I pulled out every DVD that I could find in my backpack but nothing I had could compete with the “new” Madagascar DVD.

I realized this was going to be a physical removal! As I began to pull him out from behind the counter, leaving the Madagascar video behind, he started screaming and fell to the ground. Of course this started to draw a crowd. I began going through my backpack trying to find anything to entice him to get up and continue walking down the concourse but with no success. As I looked up glancing at the growing crowd I saw an airport security guard standing there. He began asking me questions about what was going on. I attempted to give him a short course on autism. As I finished explaining the basic symptoms, another airport security guard arrived.

My daughter Kristen began pacing and crying believing that her 10-year-old brother was about to be arrested – and frankly, so did I! This was several years following 9/11 and airport security was still rather tense about unusual activity. So I continue to try to convince them that Matthew was not a terrorist as the Atlanta Police arrived!

I finally remembered the cough syrup that I had put in my backpack in case Matthew got too agitated on the trip. I pulled the cough syrup out and convinced the police that if I could just give him a dose of his medicine he would be okay, but I did not have a spoon or even juice to put it in so that he could take it.  Then God sent an angel, a lady who had wandered over from the deli on the other side of the concourse; she volunteered to go and bring us some juice.

Meanwhile the guy who was running the video store finally returned. I’m sure he was wondering what was all the excitement in front of his video kiosk. Please understand, usually I don’t give into Matthew’s negative behaviors, but under the circumstances – his impending arrest, I decided to buy the Madagascar DVD. I purchased the DVD handed it to Matthew as he stood on his feet. At that point I heard the familiar, “beep, beep, beep”, of the “airport buggy”. You know the one that takes people unable to walk to their gate.

Flanked by two Atlanta police officers Matthew was escorted onto the airport buggy. I got in the front seat with the driver and we started down the concourse toward our gate. The nice lady from the deli had returned and we were able to give Matthew a dose of cough syrup. This lady also stayed to walk Kristen to the gate as there was no more room in the buggy.

It took everything within me not burst into tears. I couldn’t – Kristen was already falling apart and I had to hold it together for her sake. Matthew on the other hand was not phased by the whole incident. He had his DVD and his world was fine. He didn’t even know that he was in custody – so to speak!  As I glanced back at him as we were riding down the concourse, beeping all the way, he had the biggest smile on his face as he was reading all the details on the DVD cover.

I glanced over at one of the police officers who looked at me with tears welling up in his eyes and he said to me, “I can only imagine what your life must be like every day”.  I did not know how to respond to that comment. I only thought to myself, “Do we look that bad?” God, I didn’t know that we looked that bad – so bad that we brought an Atlanta police officer to tears.

Well we finally got to our gate and a representative of the airline was waiting for us. I think they radioed ahead that Matthew was coming! He said to me, “Ma’am I’m not sure we’re going to let him board the plane”. I looked this man dead in the eyes, still shaking from the recent trauma, and said, “We will board this plane because I’m not doing this again tomorrow!”.  Now I was ready to become a terrorist. I think when he saw the determined look in my eyes he decided to stand down and let us board the plane with the comment, “If he is disruptive we will have to take them off the plane”. I nodded in agreement and we boarded the plane.

The flight was uneventful. As we were arriving in Denver and the captain made the announcement that we would be landing in a few minutes my heart jumped into my throat as I realized I had to get Matthew through another large airport. What if the Atlanta Police radioed ahead!? I looked at Kristen and I told her the plan. Each of us would take Matt’s arms and lock them in ours and we would make a beeline to the trains and then to the baggage claim. With God’s help we made it out of Denver International Airport without an incident.

It took me weeks maybe even months before I recovered from that trauma. Till this day I have not taken Matthew to another airport as I have considered certain choices could put him in jeopardy.

I’ve told this story to many people who laugh hilariously at the details of this incident. I can laugh now too as I look back on it today. I joke that the Atlanta Police probably has Matt’s picture posted as a potential airport terrorist.

That incident helped to cured me of a lot of embarrassment I used to feel about Matthew’s behavior. At that moment all I could think of was protecting my child and keeping him from people who did understand him or his diagnosis. I often tell parents and caregivers, when I’m doing autism trainings, that the people that stare at you when your child has difficult behaviors in public will be in your life all of five minutes but your child will be in your life forever. Do what needs to be done for your child. Embarrassment is transient; it is something that can change from terror to laughter. It is just a matter of time.

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In the early years of being a parent of a child with autism I found myself often frustrated by the messes I would have to clean up, repeatedly. Sometimes my frustration would overwhelm me to the point of tears. My daily prayers would be consumed in requests for healing for my son. I wanted him to get better so that my days were not so difficult.

Then one day I realized, as I was cleaning up behind my teenaged son for the fourth time that day,  that I was no longer angry or frustrated – I was actually singing! Something had changed, not within my son but within me. God had given me the awesome gift  of having peace within the storm. As people look on and wonder, how can I keep this up day after day and still be sane, I know it is because of the Peace of God that passes all understanding keeps my heart and mind through Christ.

While I was absorbed praying for relief, God was teaching me the lesson of peace and giving me the healing I needed.

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Many children with autism have difficulty communicating directly with others. You must strive and work to discover how to enter their world if you want to connect with them.

I recall trying to connect with my son through words but to no avail.  Then one day I discovered (I believe through God’s enlightenment) that connecting with Matthew was not going to happen through words but through his other senses – what he sees me doing with him or what he feels me doing with him. I began dancing with him because he loved to dance. I began singing the songs he liked. I began giving him more hugs  – even if they had to be from his sides or back; and each time I got  greater glimpses from him – he began to let me know, “I sense you, mom”.

The blessing of all this is that while many children must struggle to get their parent’s attention, as we are often too busy (I was such a parent), I had a child who turned the tables on me and made me work for his attention – but what a blessing it was to search and reach and then finally discover the precious gift of my child.

PLAY WITH ME

I tried to teach my child with books
He gave me only puzzled looks
I tried to teach my child with words
They passed him by often unheard
Despairingly I turned aside
“How shall I teach this child?” I cried
Into my hand he put the key
“Come,” he said
“Play with me”

Author Unknown

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