We’re not in Kansas any more; one family’s journey of hope

To the editor:
    Two years ago, a chance conversation 80 miles from our home with a stranger was the beginning of our journey. It began a chain of events that eventually landed us in Kansas. There we met Quinn, one of the best things that has ever happened to Gauge.
    The real story began nearly 17 years ago with the temporary placement of a beautiful 6-month-old boy. Little did we know how one decision that day would alter the path of our families life more then parenting any of our other adoptive, foster and/or biological children had.
    Within a few months of Gauge’s arrival we had concerns as we tried to understand where his scattered, chaotic, and high energy would lead him and us. Also, he had a resistance to typical infant nurturing from us or anyone else. He never developed day or night sleep patterns. He was not able to process typical daily sensory as most infants and toddlers could. Years of questions, frustration, love, chaos, seemingly unanswered prayers and true commitment to finding answers for him followed this beautiful child who had captured our hearts and commitment to him.
    During those years we searched for answers through many avenues and at times were successful for short periods of time only to eventually hit the wall again. After his first (and only) psychiatric hospitalization the summer after his ninth birthday we were finally able to accept and process that this child had constitutional challenges and would require from us a level of parenting and commitment that would challenge our entire family. We would need to develop non- traditional, long-term, flexible and unique supports for him to remain home-based. Just as important with in any family with a high needs child was to attempt to make sure the rest of our family could function and have their needs met. A daunting task for all families in our position!
    One choice we made was to continue to home school; that provided us the ability to create an environment that could flex to meet daily his needs/fears/challenges of the day. Also, we could avoid and reduce the stressful sensory challenges that come with in a typical school setting. We could also attempt to make sure that his experiences with in our community were successful ones. That was accomplished which has given Gauge much support and acceptance from everyone.
    We could not alter one painful part of his world, which is to watch his peers move on in their lives. Not intending to, but socially they were leaving him behind and lonely for those peer-type relationships. Siblings and adult family support specialists stepped in which helped but did not fill this void. Gauge had now grown into a young man, he also continued to be challenged with the fears and behaviors of a much younger child.
    On this journey, we have always had the support of family and friends when none of us could understand or fix this child. Let me name just a few:
    A nurse who told me I was right to be concerned -there was something different with this baby. Those words comforted me for years during our search for answers. Thank you, Paula.
    A babysitter who gave me four hours of down time during those unbelievable pre school years so I could quilt. Thanks Marcia.
    The Sunday School teacher who cared enough to step up with Gauge each year so he wouldn’t have to make so many changes in a new classroom and then eventually made him her assistant. Thank you, Kelly!
    A pediatrician who was with us in the years of uncertainty and continues to be available to us. Thanks, Dr. Blum.
    A support person from an agency who stayed with our son for several years — a relationship he still cherishes as they became friends with in the boundaries of a professional/client relationship. He still misses you. Thanks, Margaret.
    Community people who cared enough to give us the concrete help of a few hours of down time daily. Thanks, Mary, Bev, Keith, Jared, Mindy, Kimberly, Jeanne and Steve.
    We have been blessed with a psychiatrist who respected our ability to parent as we tried to get to the appropriate meds. Thanks, Dr. Hawkins!
    Even with all these in place there remained that growing hole in Gauge’s life that none of the above could fill which finally returns us to the conversation I had two years ago with that stranger. She was a Mom who was able to get a seizure alert service dog for her daughter. Could this be the answer for Gauge — a place in Concordia, Kansas?
    So, I checked out Cares but also many other places. Filling out application after applications only to be rejected by most. They empathized with our son’s needs but often only had hearing and seeing eye dogs. We were also stunned by the cost and wondered how we would finance this adventure. We needed funds for the dog which could range from $15,000 to $30,000. Some agencies also required the service dog to be the only dog in the home. Needless to say, that didn’t go over too well with our other two dogs- Jack and Molly!
    Cares could match Gauge with a dog to help mitigate some of his behaviors due to his mental health issues and support him emotionally with his developmentally delays. So it was decided that Cares is where we would finalize an application and we sent in our fee. Within weeks we received a letter that Gauge was accepted and we had been put on the waiting list. The wait could be long, probably eighteen to twenty four months. So with great anticipation, we began to save. Gauge saved, we saved, and family and friends sent in money occasionally towards our service dog fund. This trip would also require money for airfare, a week at a motel, 21 and counting meals at McDonalds (Gauge’s favorite restaurant), a car rental with a GPS (where is Concordia?), as well as the fee for the dog. In April we got “the” letter that we were registered for the June class! How exciting for us! The weeks sped by and soon Gauge and I were off to Kansas for our week of training.
    On Monday morning, the Care’s staff and volunteers did the presentation of the dogs to their new master. What a moment that was! Most parents have an abundance of those moments with their children. First day of school, concerts, Christmas programs, learning to drive, making the honor roll, first prom; high school graduation and on the list goes on. We may not have had many of those moments but we did have this one. Quinn, a 15-month-old golden retriever was presented to Gauge and from that moment on until graduation Friday night they began the process of learning to become a team. Gauge was able to work with him with in the larger group and sit through the lecture classes with the need for only one unscheduled break. We shared this experience with about 20 new friends. Some were challenged by paralysis or severe cerebral palsy and were in a wheel chair, several were non verbal and autistic, some with life threatening seizure and diabetic conditions as well another young person with the challenges of developmental,emotional disabilities and mental illness. We even had a few people from nursing homes and special education class rooms represented there.
    How can I begin to thank the wonderful people that made it possible for us to get Quinn and made the price far more affordable then most agencies? It began with people who started it all by donating pups from their litter to Cares. The next thank you goes to the volunteer family who fostered our puppy until he was ready to go on to a training program. This was a program held at the Ellsworth jail where the dogs were trained by inmates to respond to up to sixty commands. When that was accomplished the dogs were sent back into the community. Quinn went to a student at Tipton Academy, who chose as her community service project to do the next part of his training. This student was responsible for socializing Quinn in public as well as keeping him up on his commands. When this was accomplished, “our” personal trainers/ angels — Sarah and Meghan matched dogs that were ready to go with appropriate humans on the waiting list and then trained “us” for that week!
    So what does Quinn really do for our son? Well, our trip to Kansas was the first time Gauge has been able to stay away from home for more then his record of three days, he now sleeps through the night every night in his own room with Quinn. He is more confident and social with others. Just as important is that others take the opportunity to socialize with our son because of this beautiful dog. Gauge shares Quinn by taking him to visit at the local nursing home in Patten. Most people comment that they can see a reduction in his level of agitation. He can maintain longer in public and social places. His self confidence grows daily. The list really continues to grow.
    Since we came home from our trip we have been both been known to say when life gets full and chaotic with a houseful of family members and daily expectations that “We know that we are not in Kansas anymore!” We are also both aware that now that we have Quinn, “there is no place like home.”
Bonnie Lovett
Patten