www.complexchild.com Taking a Service Dog to School by Jackie Smolinski August means back-to-school time, and with the impending new school year, it s time to check off your back-to-school lists. I d like to share our list with you: Bathed (groomed) Nails clipped (times two!) New school clothes washed and ready (mutt mat washed and ready) Feeding pump and backpack ready (tether strap and harness ready) Gluten and milk free snacks (puperoni treats) List of medications and health information (list of service dog commands) Diapers and butt wipes (doggie paw wipes) Feeding bags for the feeding pump (bags to clean up dog poo) Trip to the doctors for all the med forms to be filled out (trip to the vet) Rectal Diastat check! (anal glands exuded check!) I know what you are thinking: this is not a typical family s back-to-school list, but our family is anything but typical. Copyright 2010 by Complex Child E-Magazine. All Rights Reserved. This document may be distributed for educational use only with proper citation.
2 Introducing Clarabelle Actually, in public, to most who watch us, we look more like a three ring circus complete with a circus dog in tow. However, our dog Clarabelle is not a circus dog, but an extraordinary service dog trained in seizure alert and mobility assistance to aid our middle child, Luke, who is just three and a half years old. At only eight months of age, Luke started having terrible grand mal seizures, some lasting as long as 40 minutes. As a special educator, I had seen children have seizures, but this left a hole in my heart bigger than you could imagine. Luke had many events in the middle of the night that we never knew happened until the next morning, when we would see the puddle of drool in the bed, the unsteady gait, and the tired post-ictal behavior that only came after a prolonged seizure. Terrified that Luke could die during the night, someone had mentioned getting a seizure alert dog. After searching the Internet for seizure alert dogs, we came upon 4 Paws for Ability. Last October the process was complete and we headed off to Xenia, Ohio to get Clarabelle, a black standard poodle trained in seizure alert, mobility assistance, and behavior disruption. It was clear from the first days of training that Clarabelle sensed and smelled when a seizure was coming. She soon started alerting us between six and twenty minutes before an event. She was trained to touch or paw at our legs to get our attention. Prior to that touch, Clarabelle always smelled Luke very intently before an event. She demonstrated her weight in gold to us time and time again, even waking us prior to his events. The strangest part was huddling over his crib waiting for an event to begin. We cannot stop the seizures before they happen, but Luke does get a rectal Diastat when they last too long to help bring him out. Soon after being home, I began training a handler for Clarabelle so she could attend school with Luke. Clarabelle is a certified service dog, but is certified as a three person team, which means Luke, Clarabelle and an adult handler must be together at all times. Luke is too young to work with her himself. Bringing Clarabelle to School Our local school system was very willing to work with us, although they had never had a child with a service dog in their school before. Luke required a one-on-one nurse throughout his day due to the frequency of his seizures and his medical and behavioral needs. I taught the nurse the basic commands and we learned together how Clarabelle could help Luke through the day. Clarabelle wears a harness with a handle that Luke can use to steady himself after seizures or walk holding on to. She also was trained to disrupt different behaviors when given commands like kisses or lap. When Luke is upset, we can get Clarabelle to lie
3 next to him and place her head on his lap to help him calm down. Luke loves deep sensory input, so this has worked wonders for Luke. Their first year of school was a huge success! Clarabelle soon became a great addition to the class, even helping facilitate communication between children who were mostly nonverbal. Luke s nurse, teachers, aids and therapists quickly learned what an alert looked like when Luke had seizures at school. Just like at home, she was giving between six and twenty minute notices before an event. Clarabelle s Talents One particular day, Luke suffered his most prolonged seizure since getting Clarabelle, and the school had to call 911 when the seizure wouldn t stop. That day Clarabelle began acting funny and started smelling Luke very intently. The nurse knew exactly what it meant, so she took Clarabelle and Luke into the clinic, which was the procedure that they followed after an alert. By removing Luke from the classroom and onto a soft mat, he avoids an injury when he falls into a seizure. The other children also don t have to witness this very scary event. Normally, the nurse would wait and comfort Luke, as he grows crabby before the seizure starts. However, on this day, he was crabby for over 30 minutes and still no seizure occurred. The nurse brought Luke back into the classroom and thought that Clarabelle must have been wrong. Unfortunately, to everyone s surprise she was dead on, as Luke fell into a horrible grand mal seizure, the first the children had to witness. From that day forward we have all learned not to underestimate the nose of an amazing seizure alert dog. After talking to other families, I learned that their dogs do exactly what
4 Clarabelle did by detecting the even bigger ones earlier than the smaller ones. On this day she gave us 40 minutes of time beforehand. Clarabelle spends most of her day carefully placed on her mutt mat. Obviously, she gets up to check on Luke, because it is not until she smells whatever it is his body puts off that she knows a seizure is coming. After the seizure is over, you can always find her resting comfortably in the clinic on a mat with Luke. Usually he is clutching her hair in comfort. Clarabelle also springs into action when Luke is upset, usually kissing him all over. He loves her kisses! The handler can instruct her to kiss him, but by now she usually does this unprompted. While Clarabelle was not trained in tracking, a skill that 4 Paws trains dogs to do by tracking a child who flees, she always is watching out for him. If he leaves the room, she goes with him to find where he has gone. It seems due to their strong bond that she has the skills to track him if he were to get lost. Even as he plays around the classroom, she checks in on him. My five-year-old, Alex, spent the year as a typical peer in Luke s preschool class last year, and Clarabelle, although she knows who her boy is, watches out for my other children as well! I can go on for a lot of time about what a valuable asset Clarabelle has been to our family. Luke also suffers from a central apnea, a condition in which his brain forgets to tell his body to breathe, and he stops breathing, turning blue. These events are not seizures, but Luke does need to be prodded to remember to take a breath. Although Clarabelle doesn t alert to these issues before they happen, she can recognize them. One particular day, Clarabelle was nudging me as I was driving. I did check on Luke, who appeared to be asleep in his car seat. Then, all of a sudden Clarabelle bit the arm of my jacket to get my attention. I was stunned as I turned around to find Luke completely blue in his car seat! She knew something was wrong. I have been working on getting her to nudge him and kiss her when he has these events so she can bring him out of them. At this point they are not that frequent and don t last very long, which makes training her to do this difficult. But I think she is catching on! Back-to-School with Clarabelle So while most families are buying school supplies, new school clothes, and lunch boxes, our family is preparing in a much different way. As many of you are aware, life with a child with complex medical needs can be very challenging, and the smallest things throughout the day sometimes seem like climbing a mountain. Now that we have experienced life with a service dog to help our son with the battles that lie ahead, we can truly say we have some peace of mind. We now know that when we can t be there for our son Clarabelle will!
Jackie Smolinski is a busy mother of three children: Alex (5), Luke (3 1/2) and Lily (2). Luke has a partial trisomy 16 p 11.2 duplication, seizure disorder, microcephaly, Celiac Disease, hypotonia, is globally delayed and has significant sleep disturbances. Luke is now being tube fed due to some dysphagia, poor weight gain and stomach issues. Jackie spends most of her days at Akron Children's Hospitals, where Luke sees over 20 medical specialists. Before becoming Luke's mom, Jackie was a special education teacher and respite caregiver, a passion that began when she started watching children with special needs when she was just 14. Her calling has become her life, and currently she is working on a book with several other moms with children with special needs. She has also just begun the process of starting a non- profit organization called Fund it Forward, which will help families afford expensive special needs equipment that is necessary for their children. In her spare time, Jackie enjoys scrapbooking and writing. She also began blogging to help relieve stress and share Luke's story with other moms. You can read her blog at http://seizureslayer.blogspot.com/ or Luke's page at http://www.luke.funditfwd.org/1.html. 5