James and I met last March. We were part of the medical mission team in Guatemala. Over the week as James and I became acquainted he shared with me how having a child with autism has shaped his life. I was delighted when he agreed to write a guest post because I feel that when we become more informed myths and untruths are dispelled and I believe that autism is a frequently misunderstood problem. What follows is a glimpse into the life of his family.
When Paige first asked if I would contribute a piece for her blog regarding Autism, I first thought it would be a very easy task. My pride took over. I am integrated into our community as a member of three boards serving individuals with Special Needs, the Chair and Executive Director of another board serving the Autism population, provide bi-monthly respite nights for families called Parent’s Night Out (PNO), bi-monthly Parent Resource Information and Support Meetings (PRISM), and I am also a parent of a 15 year old young man with classic/severe Autism. I thought I had a lot to say, and I could do it quickly.
I was sorely mistaken.
In fact, everything changed last week. Let me explain by telling you how we arrived to this point. I served 20 years in the Army. I grew up as an enlisted soldier and transitioned into the officer ranks as a helicopter pilot. It was during our tour in Alaska where we received the diagnosis of Autism. We heard all the buzz words parents hear long before they receive an Autism diagnosis. “He is going to be an engineer some day,” or, “look how good he plays by himself, he is such a good baby,” or, “He is so smart and so quiet,” among many other statements that later reentered our thoughts when we were told that Jacob had Autism.
At that time Autism was diagnosed 1 in every 166 children. I remember the Center for Disease Control among other advocate groups stating that it is fast becoming an epidemic. The numbers were updated three times since then, 1:150, then 1:101, and now recently the CDC stated it is 1:88. I have not heard the term “epidemic” since 1:166, but I supposed the numbers would now support their claim.
We learned quickly that there were several areas that would occupy our energy and would keep us focused in the wrong direction. As a family, we decided that we would focus our efforts in areas that were within our skill sets. We were not doctors, so we refused to spin our wheels chasing causes or cures, but to work with Jacob in the “now”. I used to be a professor at the Virginia Military Institute and I taught leadership. I would engage my students in an exercise were they were told to define success. I received a variety of answers. After the drill, the students would ask me for my definition. I would state that I cannot define success, but I can define failure; failure is succeeding at the wrong thing. This lesson has proven true in everything we do for Jacob.
Now let me explain the last 12 years. Our lives have been rearranged, turned over, expensive, embarrassing, challenging, off color, disciplined, fragile, strengthened, and tested. Patti is Jacob’s mother and an amazing young lady who can be as stubborn as she can be gentle when needed. She has defended, offended, laughed, cried, and been the bedrock of our family. Jacob has been ostracized, ridiculed, but he has been loved, accepted, and prayed for by family, friends, and our church. Seven years ago, he was in a catastrophic accident where 70% of his body sustained 3rd degree burns. He was in a coma for 45 days and went through an amazing recovery period. It was during that time we decided that I would retire from the Army, we would live in Lexington, Virginia, and we would start ministry to help families affected by Autism Spectrum Disorders. In our ministry, we discovered that 80% of marriages end in divorce, the mother usually raises their child with Autism, and she becomes isolated without support.
Jacob has terrible tantrums. I have a friend who is from Greece. He owns a restaurant in Lexington, VA, and he participates in our annual fundraisers. He asked me, “What is Autism?”
I replied, “Nick, how frustrated do you get when you try to communicate and you can’t find the right words, or the person you are talking to, just can’t understand?”
“I get so mad,” raising his arms above his head showing his frustration. I explained, “Autism is a disorder that keeps a very intelligent person from being able to communicate. They can get so upset that they lose control. It is like what you feel, times 100.”
If a child has a diagnosis of Intellectual Disability, their IQ is below 70. That’s the only diagnosis. However, that is not the same with ASD. In fact, for Jacob, the diagnosis came from a team in Seattle, Washington. Not every child will get a multi-disciplinary diagnosis, but all will agree that the testing is much more complex than an IQ test. Every diagnosis is complex. Unfortunately, because of this complexity, Developmental Pediatricians, Psychologists, Nutritionists, Practitioners of Holistic Medicine, parents, and school professionals rarely agree on the causes, cures, or approaches for treatments. Healthcare providers disagree on funding for treatments, schools argue over therapies, and parents are left paying the bills attempting to find out the “cure” or even what works in keeping their child somewhat integrated in society.
For 12 years, we altered our lifestyle. We had extreme difficulty in finding childcare for social events that my unit would sponsor, or when friends would invite us over for a BBQ. For 12 years we have grown accustomed to segregating ourselves. Our friends had learned to not ask us over for dinner because they did not want us to be forced to decline and they did not to feel guilty. For 12 years we kept our family vacations within close proximity of Jacob’s ability to travel. We flew from Alaska to the states when he was three, and that was the last time. We have felt the wrath of Jacob if we were forced into long periods in the car. In fact, anything that is contrary to his routine would eventually end with a “melt down”. While flying helicopters, I learned an Emergency Procedure for an event called a “High-side”. High-side is an emergency situation where the engines and rotor system begin an unexpected and rapid escalation. This event becomes destructive to the helicopter. Sometimes the symptoms are gradual and are not noticed until the engine has escalated too much to resolve. Other times, escalation can happen within a split-second. Just as a helicopter’s engine can high-side, Jacob’s behaviors or “meltdowns” can occur gradually or suddenly. We would often find ourselves in a very precarious situation at a grocery store, restaurant, library, school, or other area. We had developed “Emergency Procedures”. It became just easier to stay at home.
For 12 years, we had been so wrapped up in our lives and ministry with Jacob and our community; we (Patti and I) did not see what was coming.
So, what happened last week? I often travel to conduct leadership seminars. I was asked to fly to the New Mexico Military Institute and conduct two sessions on a Saturday. When I gave Patti my itinerary, she asked if she and Jacob could tag along. I just returned from Guatemala and a myriad of thoughts flashed through my mind; airport security, lines, TSA screening, outbursts, what happens if he high-sides on an airplane while flying, full body scans, Jacob is non-verbal, what happens if we separate, and the thoughts went on and on. Patti was convinced this was an experiment she wanted us to endure. We decided to take the chance, and we begun praying earnestly for God’s peace.
The time approached closer and my anxiety level skyrocketed. I have done this leadership seminar many times, but my worries were about Jacob travelling. Patti and I went into planning with excruciating details. We planned every exit strategy for her and Jacob that we could think of permitting me to continue on the trip if necessary. She called American Airlines and stated her concerns. I remember driving to a track meet for our other children when American Airlines returned her call, assigned her a special agent to answer her questions, addressed each of her concerns, and made accommodations for Jacob. We were excited that American Airlines were very supportive, but our anxiety continued. American Airlines reached out us and attempted to ease many of our concerns.
We departed for Roswell, NM. We tried to make our trip as comfortable as possible. We flew from Reagan International on Friday, March 30th with a layover in Dallas. We made our connection easily and landed at Roswell, International that afternoon. After a great dinner and an evening at the pool (Jacob loves pools), we retired exhausted and in utter amazement on how well he travelled. We laughed as we reminisced on how Jacob begged to sit at a window seat (typical for 15 year old boy). He drank the water given by the flight attendant, he waited his turn to grab his backpack from the overhead bin, and he walked through the airport politely and with a purpose. I had a wonderful leadership seminar on Saturday, and on Sunday, we departed early for home in reverse route.
We landed at Reagan, picked up our luggage, and were in the truck heading for home when I noticed that Patti was quiet and later crying. I asked her what was wrong. She said this trip was liberating. She said, “For 12 years we could not go anywhere out of fear that Jacob would have a meltdown. Now, I am wondering where we should go next.” As I write these words, I joined her in crying.
I can honestly read Philippians 4:6-8 in a much better perspective.
6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
The sky is the limit. I just asked her if we can stay domestic. I don’t want to deal with Customs.
Chief Operations Officer at Sayre Enterprises
Chairman and Executive Director of Rock Bridge Family Services