When Kelsen was born, it was one of the most exciting time of our lives. He entered the world at 2:14am on Feb 14, 2012. Literally 2:14, on 2/14 which is Valentine’s day. That has to be a sign, right? Kelsen has one incredible sense of timing!
One thing though that was impossible not to notice was how extremely flat the back of Kelsen’s head was which occurred as a complication during birth. Doctors kept telling us to put him on his belly more, which we did, but that never remedied the problem. It was about 3 months of age that he was diagnosed with plagiocephaly and a cranial helmet was prescribed. We took it in stride through, it wasn’t a large matter and, after some dad-inspired decoration, the helmet was pretty cool.
It was about this time, in the fall of 2012, that I took a job that brought us to Jasper, IN. My job prior had involved a lot of travel and long hours and this new opportunity meant I would be home with my family every night. After visiting and talking to people in the community, my wife, Karsta, quickly came around to what a great place Jasper would be to live and raise our family. We have been very happy about our decision to make this wonderful town our home.
Kelsen blossomed here in our new home. It had so much more space to run and play and Kelsen is such an exuberant child. The water park near the old gymnasium is Kelsen’s favorite park and we make frequent trips. He is part fish and being outside also means having the sprinkler or kiddy pool out to play.
When Kelsen was two years old when he contracted a form of strep virus more commonly known as scarlet fever. He awoke us screaming for help one night and running a very high fever. The next day, his body had broken out in a rash and the fever would come and go throughout the day but generally spike at night. This spot in time marks a decided change in his behavior and development. His speech regressed, his diet changed completely, and his behavior was radically different.
In the months and years that have followed, Kelsen has been diagnosed as being on the autism spectrum. At his last evaluation, the doctors placed him in at the high end of moderate/low severe range of the spectrum. He has significant sensory perception issues which cause him frustration to understand the world around him. Often feelings of pain or frustration are dealt with by acting out making school and normal interaction with other children difficult. Like any parent, we worry about him being accepted by his peers and making friends.
We learned that different organizations and businesses trained service dogs for autistic children. Often the wait list is years long though or their scope so limited that actually getting a dog specific to Kelsen’s needs is impossible. We came across one organization though that quickly accepted us, Service Dogs by Warren Retrievers. They spoke to my wife Karsta for several hours, and listened patiently while we described Kelsen and his needs. We were excited to get a tool for our son that would not only offer companionship, but also another set of eyes that could keep him from darting into the street or would lay or lean against him when acting out physically.
Service Dogs by Warren Retrievers pushed us to get out there and start fund raising saying that we’d have just a month to get the $25,000 raised. Something about that just didn’t sit right with me and I started doing some research. It was then that I found there was pending litigation against the organization in dozens of states. The TV show Dr Phil had the owner on his show to face accusations about his organization being a scam.
What this organization does is deliver a 16-week-old puppy to your home, completely untrained, and then sends a representative to you for a week at a time, 3-4 times a year, to train your “service dog” to your needs. It would have been our responsibility to pay for the travel, food, and lodging for each of these visits. What you really end up with is an extremely expensive pet that may or may not become the service dog your family needs.
We spoke out to the local community about our outrage of being deceived by Service Dogs of Warren Retrievers and was approached by Tony Neal of Pawzible Solutionz. Tony is an Air Force veteran who served multiple tours in Iraq and Afghanistan as an Military Dog Handler working with an explosive detector dog. While in the service, Tony trained dogs to find explosives, but has now put those skills to use to train service dogs.
Our service dog, Kona, is being trained to act as an anchor to keep Kelsen from darting through a parking lot or running through a store. She will also work to intervene between Kelsen and others when he is acting out to help separate him and provide distance. She will then work to lean against him or lay on his lap to provide the sensory pressure he needs to calm himself. Additionally, she’ll be a constant companion both at home and at school to help combat the loneliness and isolation of growing up with autism.
Even though we have terrific medical coverage through my employer, raising a son with autism is challenging not just from the emotional perspective, but financial as well. Our family’s medical expenses in 2016 were almost $15,000 out of pocket after our insurance provider paid their portion. Kelsen is on a gluten-free and dairy-free diet to help with his behavioral issues, requires frequent visits with multiple therapists and doctors, as well as prescription vitamins and medications.
We’re asking for your help in raising money for a properly trained service dog. We have purchased the dog, a german shepherd we named Kona, from a couple who breeds them specifically for use as service dogs, but over the course of the next year, as it is being trained by Pawzible Solutionz, there will be roughly $25,000 to raise. Pawzible Solutionz is putting no pressure on us to have this money to them by a certain time, but once this hurdle is passed, it will be one less worry on our family.
This is Kelsen today, a very happy 5-year-old boy. He has made a tremendous amount of progress since being diagnosed with autism 2 years ago. When I look at all he’s accomplished, I’m extremely proud of things most other parents likely take for granted. Roughly 6 months ago, he told me he loved me, completely unprompted, and gave me a hug. It’s moments like that that make me keep getting up in the morning. It is completely possible for Kelsen to grow out of his diagnosis. He might need some special accommodations along the way, but there’s no reason to believe he may not live a normal life with enough help now in his development.
If you could help us with a donation of any amount toward the training of Kelsen’s service dog, we would be truly grateful. Thank you.
- Mary Winfrey
- Rod & Debbie Jacob
- Donnie and Sharon Knies
- Bill and Karsta Erickson
- Defiance Operations Area - TransCanada
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