On the mountain with Wyatt Chisamore
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My son Wyatt has a passion for being on his mountain bike. Over the last three years his love for this sport has grown. He has owned a few mountain bikes. His skill level and his need to be on his bike has grown! He started just puttering around the house. Then he completed a mountain bike camp in Putney, VT two summers ago. Last summer he joined our local community rides #TNR. He was one of the youngest regular riders! The bike community was amazing and embracing! He is in need of a higher end bike and safety gear than I can provide. We are hoping to reach out to our community and maybe even beyond for help.
At the end of 2018 mountain bike season Wyatt joined two out of the three VT Youth Mountain Bike Races. The first race he made it to the half way point and did not finish. He was having some troubles with his bike and he got emotional. The 2nd race he entered he finished 18th. He started at the back of the pack as he had not placed in the 1st race. A pre ride option was available on the night before the race, in order to do so we camped in a tent in the parking lot. He had two goals for the race finish it no matter what and place in the top 20. He made both of his goals. The 3rd race he was unavailable to attend as he was inpatient at Boston's Children's Hospital. Had he not been he would have been in attendance! He was most disappointed!
Wyatt is a scout. He had been participating in scouts within our town. Troop #252. As of last year he started a new school in Putney, VT. This school academically meets his learning differences. Last year he was a day student. This year he is a boarding student. He had been making bi-weekly trips back home for scouting meetings but this was getting to be too much on him. So we started looking for a troop closer to his school. We found one in Brattleboro, VT #405. He has visited twice and most likely will be transferring to this troop in the near future. Wyatt has a big goal of becoming an Eagle Scout. For someone with such a complex learning profile as Wyatt's, this is a large goal. He needs to start working towards merit badges. One of the required badges for Eagle is swimming, hiking, or cycling. Swimming comes very hard to Wyatt. He has passed the swim test. He had to work harder than most to pass the swim test. He was glowing when he passed it! He is aware that he may not have the ability to become a strong enough swimmer to earn the merit badge for swimming. Hiking is fun but not his speed! He has a plan to set out to complete the Mountain Bike option to fulfill this requirement. Getting this merit badge to completion will be a lot of hard work and dedication. This is a reachable goal!
Wyatt's School Journey:
Wyatt never hit any of the milestones as a baby/toddler. He just after his 1st birthday started working with Family Infant and Todler program (FIT) now known as Children Integrative Services (CIS) a community outreach program that tracks the growth of toddlers and provides extra support to promote growth. He transitioned to our districts Early Education Program (EEE) at age three on an Individualized Educational Plan(IEP). He worked with them until his 5th birthday. He missed the cut off in our town to go to kindergarten that year as he had to be five by September 1st. His birthday is at the end of the month. He tested out of his IEP and did not receive services again until the end of his kindergarten year. I wish I had a better understanding of the IEP system I would have challanged this finding. Something as a mom I look back on now and regret. It was VERY clear to his kindergarten teacher that Wyatt was not learning like his peers just a few months into school. She encouraged me to write the district asking for an evaluation. We found an educational advocate and had to start testing on our own as the team declined testing. The use of this report helped pave the way for Wyatt to get a further educational testing. Wyatt was found elligable for an IEP in May of 2012. He repeat kindergarten. The school system continued to push Wyatt along in grades despite his work not being at grade level. Services like Occupational Therapy, Speech Language Pathologists, adaptive equipment, and truly specialized instruction were not made available. During Wyatt's 4th grade year his days became filled with multiple class pull outs at this point he had become aware he was unlike other students. The case manager was found to not be providing services. This prompted an internal investigation. This teacher had been targeting Wyatt. The district determined the special educator was quilty of bullying him as well as they owed him compensatory services. The teacher was fired by the district. At this point Wyatt's reading and writing deficit was huge. He had the ability to read and write as if he was still in Kindergarten. His growth was so minimal. As a mom I had been doing research on schools and applied to one in VT who helped children with learning disabilities with an average IQ. He was accepted. When our district finally decided that Wyatt's needs exceeded what could be provided within district this school was considered. He was enrolled as a 6th grade day student for the 2017/2018 school year. Wyatt was transported back and forth daily. He left the house at 6:30 AM and arrived back home about 6:30 PM. We experienced many issues with transportation. Once Wyatt was left at school by the transportation company and they didn't know they forgot him. For the 2018/2019 school year Wyatt became a boarding school student so he could gain better access his education. At his alternative school placement, biking culture helped him gain friends. Wyatt's learning profile now consists of many diagnoses: A double dyslexia with a cognative component, Auditory Processing Disorder, Sensory and Visual Processing Disorders, and Speech and Language Impairment. Other Health Impairment(s) DEPDC5 and NPRL3. In this alternative school he is no longer the odd man out. He is finally making measurable academic progress! He is in classes with his peers.
Wyatt's Health Journey:
Our educational advocate who has been following Wyatt since his first try at Kindergarten (Phil Eller) noticed some differences in Wyatt's 3 year evaluation at the end of 3rd grade, when he compared testing to previous 3 year evaluations. He recommended we get a referral from our pediatrician to see a Neurologist at our closest large hospital and have Wyatt evaluated. We waited our turn to see the doctor. We shared Wyatt's educational profile and they completed a neurological assessment. At that time we got signed up for some medical testing: an EEG, MRI, and some basic laboratory tests. We discovered that Wyatt was having nocturnal focal seizures in his front temporal lobe. These seizures had probably been going on for a long time undetected. We started him on antiseizure medications. Wyatt has now tried four of them. He has undergone several rounds of genetic testing. He was given a diagnosis of DEPDC5. After about a year's time we had not found the correct medication to slow down or stop his seizures. I asked and asked for a referral to Boston's Children's Hospital for a second opinion. I was told by many doctors that it may be a waste of my time and they felt they had Wyatt's medical care under control. I questioned this and made the call myself to get a second opinion. It took a lot of effort to collect medical records and school files to send to Boston. But this choice was one of the best ones I have ever made. We were able to get two second opinions one from the genetic team and the other from another Neurologist. We have made a total of five trips to Boston's Children's Hospital thus far. We have learned that Wyatt has another genetic disorder called NPRL3. Wyatt is the ONLY known case that both genetic changes can be found in his body DNA. The other known cases (about five) have one genetic change in their brain DNA and the other in the Brain DNA. Brian DNA and Body DNA are different. We have found one medication that stopped his active night time seizures and his brain is still misfiring 4 to 6 times per minute while he is sleeping. Wyatt has started taking a newly released medication called Epidolex. He started this in combination with the med that stopped the active siezures. He started this journey in January 2019. His school teachers are seeing improvements in his learning and ability to retain lessons from day to day. We have a follow up EEG in June to see the actual impact on his brain activity at night! The abnormal brain activity is the main reason why Wyatt never hit any of his milestones. It is his biggest hurdle to overcome. Riding mountain bike gives him focus, purpose and gives him great joy!
Our Family:
Wanted Equipment:
*Hydration Pack ~ During the summer of 2018, Wyatt had three that did not meet the sturdiness required for a 12 year old mountain biker. He would like an extremely durable one.
*Water bottle set up to attach to his bike.
*Bike Shoes he prefers 5TEN's.
*Bike lights he would love to join a night ride safely.
*A new helmet~ These need to be replaced for ultimate protection and safety.
*Chest protector and pads ~ Protection that is utilized for downhill rides and rides that require complicated skilled rides.
*Riding pants and shorts his from last season no longer fit.
*Riding glasses to protect his eyes from limbs (They would need to be prescription glasses).
*Peddles and Grips
*Riding gloves
*Wyatt is hoping to be able to compete this year on a high end Rocky Mountain or Trek bike with full suspension, plus size tires. He would prefer a tubeless tire set up. (His new Marlin bike from last summer had regular maintenance and it still required a new front shock system. Wyatt would be very pleased if he could get a bike that could withstand more than one season of practicing and competing.)
At the end of 2018 mountain bike season Wyatt joined two out of the three VT Youth Mountain Bike Races. The first race he made it to the half way point and did not finish. He was having some troubles with his bike and he got emotional. The 2nd race he entered he finished 18th. He started at the back of the pack as he had not placed in the 1st race. A pre ride option was available on the night before the race, in order to do so we camped in a tent in the parking lot. He had two goals for the race finish it no matter what and place in the top 20. He made both of his goals. The 3rd race he was unavailable to attend as he was inpatient at Boston's Children's Hospital. Had he not been he would have been in attendance! He was most disappointed!
Wyatt is a scout. He had been participating in scouts within our town. Troop #252. As of last year he started a new school in Putney, VT. This school academically meets his learning differences. Last year he was a day student. This year he is a boarding student. He had been making bi-weekly trips back home for scouting meetings but this was getting to be too much on him. So we started looking for a troop closer to his school. We found one in Brattleboro, VT #405. He has visited twice and most likely will be transferring to this troop in the near future. Wyatt has a big goal of becoming an Eagle Scout. For someone with such a complex learning profile as Wyatt's, this is a large goal. He needs to start working towards merit badges. One of the required badges for Eagle is swimming, hiking, or cycling. Swimming comes very hard to Wyatt. He has passed the swim test. He had to work harder than most to pass the swim test. He was glowing when he passed it! He is aware that he may not have the ability to become a strong enough swimmer to earn the merit badge for swimming. Hiking is fun but not his speed! He has a plan to set out to complete the Mountain Bike option to fulfill this requirement. Getting this merit badge to completion will be a lot of hard work and dedication. This is a reachable goal!
Wyatt's School Journey:
Wyatt never hit any of the milestones as a baby/toddler. He just after his 1st birthday started working with Family Infant and Todler program (FIT) now known as Children Integrative Services (CIS) a community outreach program that tracks the growth of toddlers and provides extra support to promote growth. He transitioned to our districts Early Education Program (EEE) at age three on an Individualized Educational Plan(IEP). He worked with them until his 5th birthday. He missed the cut off in our town to go to kindergarten that year as he had to be five by September 1st. His birthday is at the end of the month. He tested out of his IEP and did not receive services again until the end of his kindergarten year. I wish I had a better understanding of the IEP system I would have challanged this finding. Something as a mom I look back on now and regret. It was VERY clear to his kindergarten teacher that Wyatt was not learning like his peers just a few months into school. She encouraged me to write the district asking for an evaluation. We found an educational advocate and had to start testing on our own as the team declined testing. The use of this report helped pave the way for Wyatt to get a further educational testing. Wyatt was found elligable for an IEP in May of 2012. He repeat kindergarten. The school system continued to push Wyatt along in grades despite his work not being at grade level. Services like Occupational Therapy, Speech Language Pathologists, adaptive equipment, and truly specialized instruction were not made available. During Wyatt's 4th grade year his days became filled with multiple class pull outs at this point he had become aware he was unlike other students. The case manager was found to not be providing services. This prompted an internal investigation. This teacher had been targeting Wyatt. The district determined the special educator was quilty of bullying him as well as they owed him compensatory services. The teacher was fired by the district. At this point Wyatt's reading and writing deficit was huge. He had the ability to read and write as if he was still in Kindergarten. His growth was so minimal. As a mom I had been doing research on schools and applied to one in VT who helped children with learning disabilities with an average IQ. He was accepted. When our district finally decided that Wyatt's needs exceeded what could be provided within district this school was considered. He was enrolled as a 6th grade day student for the 2017/2018 school year. Wyatt was transported back and forth daily. He left the house at 6:30 AM and arrived back home about 6:30 PM. We experienced many issues with transportation. Once Wyatt was left at school by the transportation company and they didn't know they forgot him. For the 2018/2019 school year Wyatt became a boarding school student so he could gain better access his education. At his alternative school placement, biking culture helped him gain friends. Wyatt's learning profile now consists of many diagnoses: A double dyslexia with a cognative component, Auditory Processing Disorder, Sensory and Visual Processing Disorders, and Speech and Language Impairment. Other Health Impairment(s) DEPDC5 and NPRL3. In this alternative school he is no longer the odd man out. He is finally making measurable academic progress! He is in classes with his peers.
Wyatt's Health Journey:
Our educational advocate who has been following Wyatt since his first try at Kindergarten (Phil Eller) noticed some differences in Wyatt's 3 year evaluation at the end of 3rd grade, when he compared testing to previous 3 year evaluations. He recommended we get a referral from our pediatrician to see a Neurologist at our closest large hospital and have Wyatt evaluated. We waited our turn to see the doctor. We shared Wyatt's educational profile and they completed a neurological assessment. At that time we got signed up for some medical testing: an EEG, MRI, and some basic laboratory tests. We discovered that Wyatt was having nocturnal focal seizures in his front temporal lobe. These seizures had probably been going on for a long time undetected. We started him on antiseizure medications. Wyatt has now tried four of them. He has undergone several rounds of genetic testing. He was given a diagnosis of DEPDC5. After about a year's time we had not found the correct medication to slow down or stop his seizures. I asked and asked for a referral to Boston's Children's Hospital for a second opinion. I was told by many doctors that it may be a waste of my time and they felt they had Wyatt's medical care under control. I questioned this and made the call myself to get a second opinion. It took a lot of effort to collect medical records and school files to send to Boston. But this choice was one of the best ones I have ever made. We were able to get two second opinions one from the genetic team and the other from another Neurologist. We have made a total of five trips to Boston's Children's Hospital thus far. We have learned that Wyatt has another genetic disorder called NPRL3. Wyatt is the ONLY known case that both genetic changes can be found in his body DNA. The other known cases (about five) have one genetic change in their brain DNA and the other in the Brain DNA. Brian DNA and Body DNA are different. We have found one medication that stopped his active night time seizures and his brain is still misfiring 4 to 6 times per minute while he is sleeping. Wyatt has started taking a newly released medication called Epidolex. He started this in combination with the med that stopped the active siezures. He started this journey in January 2019. His school teachers are seeing improvements in his learning and ability to retain lessons from day to day. We have a follow up EEG in June to see the actual impact on his brain activity at night! The abnormal brain activity is the main reason why Wyatt never hit any of his milestones. It is his biggest hurdle to overcome. Riding mountain bike gives him focus, purpose and gives him great joy!
Our Family:
Wanted Equipment:
*Hydration Pack ~ During the summer of 2018, Wyatt had three that did not meet the sturdiness required for a 12 year old mountain biker. He would like an extremely durable one.
*Water bottle set up to attach to his bike.
*Bike Shoes he prefers 5TEN's.
*Bike lights he would love to join a night ride safely.
*A new helmet~ These need to be replaced for ultimate protection and safety.
*Chest protector and pads ~ Protection that is utilized for downhill rides and rides that require complicated skilled rides.
*Riding pants and shorts his from last season no longer fit.
*Riding glasses to protect his eyes from limbs (They would need to be prescription glasses).
*Peddles and Grips
*Riding gloves
*Wyatt is hoping to be able to compete this year on a high end Rocky Mountain or Trek bike with full suspension, plus size tires. He would prefer a tubeless tire set up. (His new Marlin bike from last summer had regular maintenance and it still required a new front shock system. Wyatt would be very pleased if he could get a bike that could withstand more than one season of practicing and competing.)
Organiser
Amy Chisamore
Organiser
North Springfield, VT
