Matthew's Journey: Embracing Reality, Reinforcing Faith & Family Core Values
Libby and I are the proud parents of Matthew. He is our 28 year old nonverbal autistic son who lives with us. He is the older of our two sons. He has challenged us to be a better family and to rise above the daily struggles of parenting a "normal" child, and to accept that our lifelong reality with Matthew would demand a family transformation. Our journey with Matthew transformed our family from a dysfunctional family (trying to survive the moment) into the dysfunctional-functional family (making the best of our new normal and never limiting what might be). Along the way, we endured many trials that deepened our faith as sometimes that was all we had to survive the moment. These trials (crucibles) expended our physical and emotional energy tanks which caused us to focus inwardly to strengthen our family in order to better help Matthew. Our experience has humbled us, deepened our faith, strengthened our love for one another, and greatly increased our empathy for those with special needs. Here is our story:
We wonder what life for Matthew would have been like had we not traveled around in the military but stayed in one place. At the same time we think that the upheaval in Matthew's life was good for him as it forced him to be more adaptable to change. We are also grateful for all the different family members, friends, teachers, therapists, and doctors along the way and the various therapies/treatments we discovered that we might have missed had we not traveled.
Matthew was a full-term baby born on October 25, 1986 with no complications during pregnancy or birth. Matthew developed typically as far as we knew until 18-24 months when his language and social skills that should have been developing were nonexistent. He did have chronic ear and respiratory infections beginning at the age of 8 weeks and was on antibiotics constantly. He had four sets of ear tubes beginning at 14 months and ending at age 3 when he had his tonsils and adenoids removed. Before we had Matthew evaluated, we thought he was just a very independent toddler who loved playing by himself (for hours it seemed). He could organize his blocks by color and stack them over his head-incredible fine motor skills! He also loved lining up his many toy cars and checking out license plates on cars. He was more interested in objects than people as objects were static and predictable and people were not. When he looked at us, he unemotionally looked through us. As first-time parents, it shook us to our core.
At the age of two we had Matthew evaluated by the Autism Resource Center in Winchester, Virginia mainly for delayed speech. The speech therapist who evaluated him actually came to our quarters at Quantico, Virginia. The therapist believed that Matthew was speech delayed due to his chronic ear problems and not being able to hear well probably most of his life. However, she also detected some auditory processing problems that were not normal for a child that age; Matthew could not follow a simple one-step direction. At this time we had our second son, Hayden, just before leaving Quantico, and he developed typically with no problems.
We then moved to Ft. Rucker, Alabama when Matthew was 2 1/2 years old. There Matthew went through a series of tests including an EEG and CT head scan to rule out any organic causes of his developmental delays. All the tests were normal. Matthew attended a private Christian preschool with typical kids and did fairly well despite biting the other kids when he became frustrated. Matthew began talking at age 3 and said several words...mostly functional items like food items, toys, body parts, clothing items, numbers, and letters, etc. He did say, "Daddy" and even a few short sentences like, "Go daddy!" One could not carry on a conversation with Matthew but the words did come out when Matthew wanted to say them. Fortunately, we had close Army friends and family members who insisted on watching Matthew & Hayden so we could get away and recharge-vitally important to maintaining balance with our new normal. These respites allowed us to rest, reconnect, and discuss how to better support one another and Matthew once we returned.
Between Matthew's 3rd and 4th year we explored two different therapies to try and help him. We went to the Option Institute in Sheffield, Massachusetts to learn about the "Son Rise" program which had supposedly cured Ron Kauffman of his autism. We spent a week learning how to work one-on-one with Matthew to hopefully entice him out of his own world and create situations that would force him to communicate with us (i.e., putting his food up high so he had to "ask" for it.) The program was quite intense and involved recruiting volunteers (friends, neighbors, and several Boy & Girl Scouts) to help so that Matthew could be worked with as many hours as possible per day in his room. The idea was to be so exciting to Matthew that he would want to interact with the volunteers. We were able to continue this program for about a year and a half...not quite as intensely as the guidelines called for....but at least 4 or 5 hours per day. Matthew did progress during this time and most importantly developed a bond of trust with people that I believe helped him as we explored other therapies later on. He also had daily sensory integration therapy which really seemed to calm him and allow him to focus. We continued to provide the sensory stimulation of deep pressure, swinging, bouncing, spinning, etc. Matthew seemed to need less and less of this stimulation as he aged.
Our next duty station brought us to Ft. Leavenworth, Kansas where we stayed for a year. We continued doing the "Son Rise" program with Matthew 4 or 5 hours a day and he continued in speech therapy. He had a comprehensive evaluation at The University of Kansas Medical Center by a team including a social worker, speech pathologist, psychologist, developmental pediatrician, special education teacher, audiologist, and occupational therapist. After five days of testing the final diagnosis was moderate to severe autism with possible mental retardation. The diagnosis was emotionally devastating, but through our resilience we decided not to succumb to the expert's assessment but to use the diagnosis to get Matthew enhanced services and to focus on his improvements. During this year, Matthew learned to swim. After several months, he developed an odd stroke that resembled a butterfly less the full forward extension of his arms. Even today he swims the same stroke. Swimming is a great release for him and a shared enjoyment for us as he will look intently into our eyes with complete contentment.
Soon after Matthew's diagnosis of autism, we moved to El Paso, Texas (Libby's hometown) while I did an unaccompanied tour to Korea. We moved there in June 1992 a month after Matthew had his Measles, Mumps & Rubella (MMR) booster shot. During those first few months in El Paso, Matthew's language ceased. To this day we do not know if all the changes in his life caused the regression or if it may have been the MMR booster shot that put his immune system over the edge. The fact is he stopped talking, other than a couple words (no, all through) and still does not have speech today. This setback was especially difficult as I was in Korea and unable to comfort and help Libby. Out of desperation, I sought the counsel of our squadron chaplain and a Christian Army buddy-a rarity for me as I did not want to burden others with my problems. They grounded me in enlightening scripture. I began attending church services regularly and started my mornings with the Daily Bread-a great comfort and perspective for me. I returned from Korea to Joint Task Force-Six at Ft. Bliss in El Paso. To my discouragement, I discovered that our younger son Hayden had grown to be both fearful & resentful of Matthew. It was then that I began camping with Hayden. We camped with an Army friend and his son (the same age as Hayden). Our camping trips were a perfect venue to teach Hayden new skills, have fun, and explain Matthew's circumstance. Years later, Hayden apologized for being selfish. I assured him it was all a part of growing up and gaining perspective. Today, Hayden is proud of Matthew. In fact, they both enjoy one another's company and Matthew was Hayden's best man for his wedding.
Matthew was not quite 10 years old when we endured the toughest time ever with him. We survived our typical challenges with him throughout his first 10 years of life: biting, aggression towards his younger brother, smearing his feces all over his room, wandering out of the house naked, hyperactivity, shredding paper and books, and largely ignoring our commands, but when the "rage attacks" as we called them started, we had to do something. It came to a head when we were moving to Ft Drum, New York and Matthew rode with me. He was out of his seatbelt just about the whole time biting and hitting me from the back seat. When we were not driving he would randomly lash out in a restaurant or our hotel room-not a good situation. This time in Matthew's life was probably the closest we have come to thinking about a residential option for him. He was destroying our family with his behavior, and we were not sure that we could survive the trip let alone having him live at home any longer. It was the lowest point in our family history. It was so bad that I told Libby I didn't know if I could take battalion command as I could not even drive across country with my family!
Matthew did settle down once we got to New York. He was able to get back into a routine but his aggression and biting did continue. The school district called in a psychologist to evaluate Matthew and to make suggestions for improving his behavior-the answer was communication. We were using the picture communication symbols at the time which seemed to help somewhat. We had tried all forms of communication with Matthew including sign language but he never seemed to take off with any one form.
It was during our first year in New York that we began a true gluten and casein free diet for Matthew. Libby also eliminated soy, corn, and began mega doses of B-6 vitamins. We really did not see remarkable changes in Matthew at home but his teacher did say he seemed much calmer and focused at school. When Matthew turned 12 and was full speed into puberty, he began a new type of "happy aggression" in which he would become aggressive just to say hello to people. His pediatrician recommended we try Risperdal to help even out his raging emotions and hopefully tone down the aggression. We saw an immediate improvement for the first time ever with a drug
In 1999 we spent Matthew's 13th year in Carlisle, Pennsylvania. He attended a regular high school but was in a self-contained class. He was the only student in this class with a teacher and an aide. The teacher had various kids...both special needs and typical come into the classroom to provide some classmates for him.
The next year (2000), God had bigger plans for us. We moved to Peachtree City, Georgia and I still thank Him for sending us there and connecting us with Matthew's teacher (Paul Batchelor) for that year. It was probably the best year of Matthew's life. Paul has a gift for teaching special needs kids and he believes in them and expects the world from them. He accepts no behaviors, sets limits, and has consequences for misbehaviors and rewards for good behavior. Paul began exploring with Matthew to see what level he might be at academically. Paul discovered that Matthew could read, write, and do simple math problems. We believe some of these skills were self-taught...especially the spelling and math. Matthew continued to amaze us as he quickly learned to tie his shoes, button, snap, and wear a belt....all tasks that had never been taught to Matthew as occupational therapists had told us through the years "to keep it simple" and just put Matthew in pull up elastic waist pants and Velcro shoes. We realized the incredible capabilities Matthew had and his teacher was amazed at how quickly Matthew learned the new tasks. The aggressive behaviors diminished greatly and by midyear, Matthew was attending a regular Ed science class which he did quite well in: he was able to absorb the information and answer questions over the material accurately. We left Peachtree City after a year and headed back to Ft. Drum, New York with new dreams for Matthew-no limits.
We were happy to be headed back to New York--familiar ground as far as services and schooling for Matthew. We then went to Canada and had a baseline mapping done of Matthew's brain which measured oxygen and blood flow to the various parts of the brain. The scan revealed abnormalities--especially in the temporal lobe responsible for his executive functions (decision making).
We returned to Peachtree City in August 2003 and were thrilled to be reunited with Paul Batchelor. Shortly thereafter, I deployed to Iraq and Matthew became very angry. Despite Matthew's anger, the next few months proved to bring about miracles in Matthew's communication that we had prayed for for years. Matthew began writing (something Paul Batchelor had worked on diligently our first time in Georgia and it had all but disappeared in New York) with facilitation (touch to his hand) to communicate his needs. As time has gone on, he has progressed from writing very basic needs like eat and drink to expressing his feelings and even to being able to express the reason for his feelings. He now wrote in full sentences. He even started to use the words like please and sorry which was miraculous to us. I am still amazed at the correct spelling and the vocabulary he uses...words that his teacher had not introduced! We later learned during his Confirmation class in 2005 that he has a photographic memory. He wrote that it took him 5 seconds to read a page of text. For years he routinely leafed through our magazines, little did we know that he was absorbing information. This communication has opened a whole new world for us and Matthew as he now has more choices in his life that are not limited to picture communication symbols.
In 2009, Matthew graduated from high school and transitioned to a state sponsored day program called Hands-for-Hire. The program is designed to place special needs individuals in jobs in the local community. Matthew assembles meals for Meals-on-Wheels and does janitorial jobs. He has an IPAD that he uses to communicate. Matthew also sees a neurological chiropractor who has helped him immensely with his concentration, better decision making by discriminating between what he sees and what he hears, proprioceptive processing-in other words coordinating input from his senses to deliver effective cognitive information to make better decisions and to better cope in the world. Matthew has developed into an incredibly patient and loving young man who enjoys being with people. In addition to swimming, he now likes biking, running, shooting baskets, kayaking, playing pool, throwing darts, and when Libby's not watching having an occasional beer with dad! Our next challenge is to plan a transition for Matthew into a group home because someday Libby & I will be unable to care for him. Our fear is an unforeseen event might force a crisis transition.
In conclusion, our journey with Matthew has been one of many peaks and valleys as usually is the case with autism. By embracing our reality and placing our trust in God and not limiting Matthew, we endured many setbacks and are extremely grateful for his progress. Thanks to family, friends, and professionals, we have been able recharge our emotional and physical energy tanks along this lifelong journey. I do believe each therapy and treatment we tried has been worthwhile and many have helped him in one way or another. We now no longer get depressed as each birthday passes for Matthew, as we believe he will continue to surprise us in ways we never imagined. Although we pray for Matthew to speak on his own, I do believe there will be a technological breakthrough to enable his speech in the near future. So our journey continues...
True Growth Takeaway:
Never give up hope and never limit outcomes. Embrace your reality and work with family, friends and professionals to make the best for your family. How many opportunities to improve your situation have you avoided because you were too exhausted?
True Growth Journaling Questions:
What challenges are you experiencing that demand a reassessment of your core values and a change in your behavior to improve your circumstance?
About the author:
Shane Deverill served 32 combined years as an Army officer and as an Army civilian. His key career experiences include commanding the 10th Aviation Brigade, Army Forces Command Inspector General, and First Army Human Resources Director. He graduated from the United States Military Academy in 1981and has two masters degrees. He has been married to Libby for 34years, and they have two sons, Matthew, Hayden and a daughter-in-law Faith.
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