Canine 4 Colin: Our Journey to a Service Dog
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Colin is a 4 year old non-verbal Autistic boy in need of a service dog to help him with daily living skills, severe behaviors due to Autism, communication, and the effects of seizures. Colin has the diagnoses of Level 3 (Severe) Autism Spectrum Disorder, Myoclonic Encephalopathy, Global Developmental Delay, and he has an EXTREMELY rare genetic disorder (41st in the world) called a CHD-2 related disorder. There is no official name for the genetic disorder since it is so rare.
Colin
Colin was born at 29.5 weeks, 10.5 weeks early. He spent 2.5 months in the NICU, which was extremely difficult for Lloyd and me. We thought that this would be the hardest thing that we would endure with Colin.
Colin started Early Steps at 6 months old, and it was during this time that his therapists and I noticed some characteristics not explained by prematurity: not talking, limited eye contact and delayed motor skills to name a few.
Around Colin’s 1st birthday we started noticing some body jerks and twitches. We consulted a neurologist who just wanted to monitor them.
At 2 years old, Colin was referred to Children’s Hospital in New Orleans for Autism testing. One week later, a week after his 2nd birthday, we received the most difficult news of our lives: Colin was diagnosed with Level 3 (Severe) Autism Spectrum Disorder with Speech Impairment (Non-verbal) and Global Developmental Delay. We immediately enrolled Colin in Applied Behavior Analysis (ABA) Therapy, which is considered the best and most successful Autism therapy. We educated ourselves about Autism and did everything to ensure that we were doing the absolute best for Colin.
In July 2018, at 3 years old, Colin was referred to Children’s Hospital for an EEG and MRI since the jerks/twitches had not subsided. Shortly after, he was diagnosed with Myoclonic Encephalopathy. This means he has recurrent seizures/jerks, abnormal brain function, and intellectual disability. Also, at this time, we were under the care of a pediatric geneticist and underwent genetic testing to see if there was an explanation for Colin’s medical diagnoses.
In October 2018, the genetic results came back, and we were in complete shock: Colin had an extremely rare genetic disorder. In fact, the disorder was so rare that he was the 41st person in the WORLD diagnosed with this. It has no official name. It’s called a CHD-2 Related Disorder. We discovered that this was a de novo (not inherited) genetic mutation on the gene CHD-2. This mutation happened at conception when the DNA strands were duplicating. About 20 people with a CHD-2 related disorder had been studied at the time of Colin’s diagnosis. The common characteristics: myoclonic seizures/jerks, significant speech delay, including nonverbal, developmental delay, mild to severe intellectual delay, Autism, ADHD, and aggressiveness. At this point, everything made sense. Every diagnosis and characteristic were explained. That was a day that we will never forget.
WHY A SERVICE DOG?
Due to Colin’s numerous medical diagnoses, he has a difficult time with daily living skills, behavior, and communication. Oftentimes, he displays self-harming and aggressive behavior, including banging and hitting his head repeatedly. He also experiences severe emotional meltdowns daily due to anxiety, dysregulation, overstimulation, and difficulty communicating. Colin’s service dog will assist him with these behaviors by applying pressure to his body, calming him down and discontinuing these meltdowns. One of the major and most dangerous behaviors that Colin engages in is elopement. This means that Colin will run off completely unaware of the dangers around him. Colin’s service dog will be trained to be tethered to him when walking and help deter elopement. In addition, his service dog will also be trained to track his scent if he elopes. Colin’s service dog will allow him to: gain independence, experience less anxiety, encourage socialization and vocalization, function and learn in a school setting, and be a constant companion.
The Process
Once enough funds have been raised, we will be able to secure a dog for Colin. The dog will be medically tested to ensure there are no predispositions to hereditary medical conditions that would prevent it from working. His dog will also be chosen based on temperament and characteristics that make a good service dog. This will be with the consultation of the service dog trainer. We are working with a breeder that has knowledge and experience with service dogs.
Then, Colin’s dog will begin training to be a service dog. We have chosen Varnado K-9 Services, LLC. to train Colin’s service dog. She is highly recommended and is specialized in training Autism service dogs. The training process will take around 18 months to complete. Twelve months of that training is with the trainer working on commands and the services that Colin will need. The additional six months will include Lloyd, Colin, and I training with the dog. During the 18 months, the trainer will make many home visits to acclimate the dog to our home, to us, and to Colin. After the dog has earned its service vest, it will come home.
The Cost
Because the dog is trained specifically for Colin’s needs and training takes a long time, it does come with a hefty price. The approximate cost for the dog, training, and supplies is $15,000. We believe that although the cost is high, the benefits of the service dog for Colin definitely outweigh the cost.
We are in the process of planning multiple fundraising events, including a spring golf tournament, as well as accepting donations so that we can get the process started. We welcome any assistance, ideas, sponsorships, and corporate fundraisers.
We are looking forward to reaching our goal as soon as possible so that we can get Colin the service dog he so desperately needs. We are also looking forward to the amount of growth and independence that Colin will benefit from. Thank you for your support and generosity!
Colin
Colin was born at 29.5 weeks, 10.5 weeks early. He spent 2.5 months in the NICU, which was extremely difficult for Lloyd and me. We thought that this would be the hardest thing that we would endure with Colin.
Colin started Early Steps at 6 months old, and it was during this time that his therapists and I noticed some characteristics not explained by prematurity: not talking, limited eye contact and delayed motor skills to name a few.
Around Colin’s 1st birthday we started noticing some body jerks and twitches. We consulted a neurologist who just wanted to monitor them.
At 2 years old, Colin was referred to Children’s Hospital in New Orleans for Autism testing. One week later, a week after his 2nd birthday, we received the most difficult news of our lives: Colin was diagnosed with Level 3 (Severe) Autism Spectrum Disorder with Speech Impairment (Non-verbal) and Global Developmental Delay. We immediately enrolled Colin in Applied Behavior Analysis (ABA) Therapy, which is considered the best and most successful Autism therapy. We educated ourselves about Autism and did everything to ensure that we were doing the absolute best for Colin.
In July 2018, at 3 years old, Colin was referred to Children’s Hospital for an EEG and MRI since the jerks/twitches had not subsided. Shortly after, he was diagnosed with Myoclonic Encephalopathy. This means he has recurrent seizures/jerks, abnormal brain function, and intellectual disability. Also, at this time, we were under the care of a pediatric geneticist and underwent genetic testing to see if there was an explanation for Colin’s medical diagnoses.
In October 2018, the genetic results came back, and we were in complete shock: Colin had an extremely rare genetic disorder. In fact, the disorder was so rare that he was the 41st person in the WORLD diagnosed with this. It has no official name. It’s called a CHD-2 Related Disorder. We discovered that this was a de novo (not inherited) genetic mutation on the gene CHD-2. This mutation happened at conception when the DNA strands were duplicating. About 20 people with a CHD-2 related disorder had been studied at the time of Colin’s diagnosis. The common characteristics: myoclonic seizures/jerks, significant speech delay, including nonverbal, developmental delay, mild to severe intellectual delay, Autism, ADHD, and aggressiveness. At this point, everything made sense. Every diagnosis and characteristic were explained. That was a day that we will never forget.
WHY A SERVICE DOG?
Due to Colin’s numerous medical diagnoses, he has a difficult time with daily living skills, behavior, and communication. Oftentimes, he displays self-harming and aggressive behavior, including banging and hitting his head repeatedly. He also experiences severe emotional meltdowns daily due to anxiety, dysregulation, overstimulation, and difficulty communicating. Colin’s service dog will assist him with these behaviors by applying pressure to his body, calming him down and discontinuing these meltdowns. One of the major and most dangerous behaviors that Colin engages in is elopement. This means that Colin will run off completely unaware of the dangers around him. Colin’s service dog will be trained to be tethered to him when walking and help deter elopement. In addition, his service dog will also be trained to track his scent if he elopes. Colin’s service dog will allow him to: gain independence, experience less anxiety, encourage socialization and vocalization, function and learn in a school setting, and be a constant companion.
The Process
Once enough funds have been raised, we will be able to secure a dog for Colin. The dog will be medically tested to ensure there are no predispositions to hereditary medical conditions that would prevent it from working. His dog will also be chosen based on temperament and characteristics that make a good service dog. This will be with the consultation of the service dog trainer. We are working with a breeder that has knowledge and experience with service dogs.
Then, Colin’s dog will begin training to be a service dog. We have chosen Varnado K-9 Services, LLC. to train Colin’s service dog. She is highly recommended and is specialized in training Autism service dogs. The training process will take around 18 months to complete. Twelve months of that training is with the trainer working on commands and the services that Colin will need. The additional six months will include Lloyd, Colin, and I training with the dog. During the 18 months, the trainer will make many home visits to acclimate the dog to our home, to us, and to Colin. After the dog has earned its service vest, it will come home.
The Cost
Because the dog is trained specifically for Colin’s needs and training takes a long time, it does come with a hefty price. The approximate cost for the dog, training, and supplies is $15,000. We believe that although the cost is high, the benefits of the service dog for Colin definitely outweigh the cost.
We are in the process of planning multiple fundraising events, including a spring golf tournament, as well as accepting donations so that we can get the process started. We welcome any assistance, ideas, sponsorships, and corporate fundraisers.
We are looking forward to reaching our goal as soon as possible so that we can get Colin the service dog he so desperately needs. We are also looking forward to the amount of growth and independence that Colin will benefit from. Thank you for your support and generosity!
Organizer
Jennifer B. Johns
Organizer
Mandeville, LA
