Will Reynolds has been doing some amazing things! He attends school and Pikes Peak Community College and is majoring in Communications.  Will loves going to school and is excited for the fall semester to begin. 

Will’s goal is to have a career as a Radio DJ. He has been volunteering at KCMJ 93.9FM for the last 2 years and has his own equipment at home where he records the weather and hosts his own music show. 

Will has a passion for music. He has his own music studio at home and is learning to play the drums and the guitar. He practices on his instruments a few times a week and is working hard to become a great musician. He also has an extensive music collection that includes vinyl, cassettes, and CDs. 

Will has decided to live a healthier lifestyle. He has joined a weight loss program with the Developmental Disabilities Health Center (DDHC) where he calls in twice a week and has started to exercise on a regular basis.  Through the services he receives with TRE, Will is learning to cook healthy meals and budget his money. 

Rodger and Devin got married in March 2014. Rodger moved into the “city” in order to live with his new bride. After some time had passed he found out that his heart still belonged to the rural areas of Ellicott and to be closer to his family. Devin agreed as she loves Rodger’s family. They now live with Rodger’s mother, his sister, brother in law, niece, and the much adored pets in the home. They all really enjoy one another’s company and have a lot of laughter and fun together. Rodger and Devin have engaged in on a cooking class as well as volunteering for the Mill Dog Rescue.

Rodger has rejoined the Ellicott Fire Department again and enjoys his role as volunteer fire fighter. He lives for his receiver to go off initiating the need for his help. He is on call all hours of the day. When he is not at the station, he’s on call to work for the local school district in the cafeteria. He loves both of his community jobs very much. Rodger has obtained both of these jobs without the help of any other agencies as he has found natural supports on his own and obtained both jobs independently. He continues to not need any further job supports by waiver services due to being so successful on his own. Rodger additionally got a truck this year to which he is very proud of. He loves driving himself and his wife around their small town and doing things together.

Devin has very much thrived emotionally since being married with Rodger and living with his family. She feels very loved, appreciated, and encouraged. She continues to work hard on rebuilding strength in her body again, as Devin endured her first massive seizure in 2016. With the support of her husband and extended family, she is thriving and has a lot of people rooting for her continued endurance.  Devin is learning the ropes of living in a rural town.  She is meeting a lot of people and loving it. She enjoys going to church every weekend, playing bingo with church members, and planning weekend activities when possible. She is learning a lot of new skills within her new environment, such as cooking meals for the entire family and learning new recipes. She also enjoys doing arts, crafts, coloring and watching movies on her down time.

 
Our son has brought us so much joy and happiness and with his smile and contagious laugh. He brings that same joy and happiness to all. Even though we have our days of struggle, we are blessed with Jasper and he is our Lil’ Einstein.

What is Angelman Syndrome (AS)?

Angelman Syndrome (www.angelman.org) is a rare neuro-genetic disorder that occurs in one in 15,000 live births world-wide, with one in 5000 in the U.S. and Canada. Angelman Syndrome is often misdiagnosed as cerebral palsy or autism due to lack of awareness. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman syndrome will require life-long care.

Jasper was born in Tomball, TX on April 2, 2015. He looked like your normal baby with no issues. His Apgar tests came back fine and we were released from the hospital in one day. We took him home and he was the best little baby. He hardly slept, but that isn’t uncommon. We had some feeding issues, but were able to overcome that. About the age of two months, he was rolling all over the place, which seemed to be advance for his age. He hated to be in anything that held him in place. He was very active. We started to notice him having these spells of staring and blinking a lot.  At his doctor’s well-checks, we let them know our concerns, and the doctors would tell us nothing was wrong and that Jasper would develop on his own time.

At six months of age, another doctor’s visit. He wasn’t rolling over anymore and wasn’t trying to sit up or crawl. We were told, again, that Jasper would develop in his own accord. We felt something wasn’t right. We asked them about his spacing out spells and his eyes blinking and going back. They saw it and again, nothing is wrong. We knew different.

At nine months of age, we saw a different doctor in the practice in TX. This doctor finally saw that something wasn’t right and told us that as soon as we got to Colorado and got established with a pediatrician to get Jasper looked at and he recommended an MRI.

We moved to Colorado Springs in March 2016. Jasper was 11 months old. We were able to get him into a pediatrician in April. The first visit we had, we explained our issues and showed the doctor the spacing out that he did, and immediately she said it’s a seizure. She asked how many times a day Jasper would do this and we said at least 60 an hour. She was going to get him fast tracked into a Neurologist. She also mentioned that if we noticed them getting worse to take him into the ER.

That night we did our research and started to Google epilepsy, laughter, developmental delays and came up with Angelman Syndrome among other things. We just knew that we had an Angel on our hands. We felt it with all our hearts. His symptoms matched up with almost all of the characteristics of AS.

Within a couple of days, Jasper’s seizures got worse. He was having head drops. The ER doctor contacted the Neurologist to get Jasper on medicine immediately. Within a few days of the ER visit he was scheduled for his EKG to measure his brain waves. We were brought in for the diagnosis a week later.  We voiced our concerns about Angelman Syndrome and the doctor was very surprised we knew anything about it. We told him he had most of the characteristics and we felt in our hearts that he had it. The neurologist agreed and said that without a genetics test he couldn’t formally diagnosis him, but he was 95% sure also.

Our next step was the MRI which came back fine. We got in contact with TRE -The Resource Exchange (www.tre.org), where they assessed him and saw his needs. He started with Physical and Speech Therapy. We were scheduled for a genetics test in Denver the beginning of July and he had his blood drawn and we got a diagnosis back within ten days. Angelman Syndrome – Chromosome 15 had a maternal deletion which means it was turned off.

Since then, Jasper’s had an ultrasound done on his kidneys, which are fine. Tests were run on his heart, which is fine. Both of those are characteristics with problems. His eyes have been a different story. He has strabismus (lazy eye) and his vision is poor. One side being worse than the other. He’s had surgery to correct the eyes and that has made a huge impact. He still wears glasses and probably will throughout his life.

Jasper currently is in Physical, Occupational, Speech and Floor Time Therapy. We are looking into Hippo (horse), Vision and Hydro (water) therapies soon. He has overcome so much in such little time. The doctor’s diagnosis was so upsetting at first. They told us he wouldn’t walk or if he did, it wouldn’t be able to until he was about five to seven years old. He will probably never speak. His developmental delay will be major.

Jasper is our Lil Einstein! He has beat the odds with his hard work! Our family works together every day to help Jasper! He is our ANGEL!

Jasper’s Mom and Dad

I have been working as Michael’s Service Coordinator with The Resource Exchange for six months. When I met with Michael and his mother, GerriAnne, for the first time in November 2015, they told me Michael had slowly stopped going into the community over the past three years. He will get into the car when his mother needs to run errands or take him to an appointment, but Michael will not leave the car. His mother said it has taken up to five hours to get him to leave the car to go into an appointment, so the doctor will now meet with Michael in the parking lot.

Michael and his mother communicate with each another via walkie talkies when she is in a store. She will often invite a friend or a family member to go with them so they can sit with Michael when she has to leave him in the car for an appointment. Michael will go to visit family or go for long drives, but he will not     leave the car. If they have a picnic he will stay in the car.

Michael reportedly stopped going out into the community due to how he was treated by people. He stated he would get made fun of and people would stare at him as he walked past.

Michael enjoyed going bowling years ago, and he told the team that he would like to go bowling again. Michael overcame his anxiety and decided to go bowling last Saturday. When I asked him what made him change his mind, Michael said, “I said to myself, let’s just try it! And so I did.” His mother is his supported community provider, and she witnessed him bowling for the first time in years.

She said Michael had girls cheering for him as he threw the ball down the lane, and that he enjoyed dancing to the music that was playing during cosmic bowling. Michael loved bowling so much, that he even went for the second time a week later! I went to go cheer him on as he overcame his anxieties and fears. It is something so simple, but a huge achievement for Michael. 

This is what makes working in this field so rewarding; to watch these participants overcome barriers and achieve their full potential.

-Megan

With the Arc Film Festival coming up on March 23rd, I thought this might be a good time to share the story of my son, Jack Williams, local film maker and TRE service recipient for the past 10 years, currently in the care of Kelly Izard.

Jack’s autism left him functionally non-verbal until the age of 9 when he began shooting videos on an old cell phone. His sudden and dramatic path to language was the subject of a 2010 documentary called “Jack and the Video Camera.” Later the same year, Exceptional Parent Magazine ran a 5 page feature article on Jack and his unexpected conquest of language. Meanwhile, Jack’s unusual cell phone videos began winning awards at the city, county and state level. In the spring of 2012, the National PTA honored Jack at their Annual Convention in San Jose. There his film work so inspired the judges of the National Reflections Program for the Arts, that they were moved to establish a new division of the program in Jack’s honor for children with special needs.

Also in 2012, Jack received the Arc’s Outstanding Achievement Award to a standing ovation at the annual dinner and award ceremony. It was the first time this award was ever given to someone under the age of 18.

The following year, the Arc invited Jack to submit a film for consideration for the 2014 Achieve With Us Film Festival. Jack responded by shooting a film about the kindness and support he was then receiving from the female students at his middle school. “Pretty Girls” made it into the Festival, as did Jack’s film “Happy” at the following Festival in 2015.

This month, Jack will have his third film in a row screening at the Achieve With Us film festival. “Interview With The Stars” is a six-minute tongue-in-cheek look at self-advocacy. You can see a preview of it here.

Let me just conclude by saying that if it weren’t for TRE, I would probably be stone broke by now, living under a bridge with a still non-verbal Jack parked in a “borrowed” grocery store shopping cart. Your organization has done more for us than I have the words to express. Thank you so very, very much!!!