Chase’s Story
The Diagnosis
Being a new parent is always exciting and fun, but also scary, frustrating, and exhausting. Being the parents of a child with special needs, one experiences all those emotions tenfold. Wipe the slate clean of all your expectations because every day has its own challenges. Not having a diagnosis is extremely difficult. In our case, it started when Chase began having feeding issues with bottles. He was not achieving milestones such as sitting up on his own, being able to turn his body, crawling, etc. At age one, Chase had his first seizure and our diagnosis journey began. It took three years before the Genetics clinic at Children’s Hospital in Seattle finally gave us the answer: Angelman Syndrome. So rare, in 1989 even most doctors had not heard of it, which complicated the struggle to find ways for Chase to grow and develop.
Post Diagnosis
New to the AS community, we now had to learn what our life as a family with AS will look like. So many things race through your mind after such diagnosis; Is there a cure? Will Chase ever walk or talk? Will Chase ever live a normal life? AS was still so new and unknown to most. After many consultations and research, we learned what we can expect with AS; the struggles Chase will be experiencing such as epilepsy, mobility and speech issues and the hurdles our family will have to go through. Fear was an inevitable feeling. Friends told us they noticed a difference but were too reluctant to say anything to us. Our love for Chase never altered, if anything, it grew stronger. Even at his young age his attitude was admirable, his smile was infectious and his laugh was contagious. We knew we were a strong family and what Chase’s diagnosis taught us was to not take anything for granted, appreciate each other, and to always have fun and enjoy life!
Seizures
Chase’s seizures began at age one and became a daily occurrence. Fortunately, we had great doctors that after much trial and error, came up with the right medication combination to help manage these seizures. As these became more regular, we were able to identify specific things that fueled the seizures; anxiety, illness, over excitement, anger, and frustration. Chase has had many seizures that resulted in multiple hospital and EMT visits but don’t worry, he was able to still sport that iconic Chase smile afterwards!
Mobility
Since birth, Chase has had to struggle to meet the physical milestones that most kids are able to achieve. Chase would regularly attend physical therapy to work on his mobility. Although he would never be able to walk on his own, he was learning how to walk with the assistance of a walker. As Chase’s seizures became progressively worse and more often, we made the difficult decision to stop using the walker out of the fear of him having a seizure, falling and seriously injuring himself. We were in denial at the beginning as it was hard to accept the fact that your child will never be able to walk on his own and will need a wheel chair for the rest of his life. Chase learned to crawl to get where he needs to go around the house when he is not in his wheel chair.
Speech
While most kids say their first words by age one, Chase was unable to verbally communicate. At an early age, we put him in therapy to learn new ways to communicate. We tried communication books and flash cards but Chase was never really able to grasp the idea. Instead, he would grab your hand and use it to point to what he wanted or in the direction he wanted to go. Over time, Chase learned how to use his eyes to tell you what he wanted and when you got it right, you got that big smile! One of the biggest struggles with being non-verbal, is that he is not able to tell us when he is sick or is in pain. As a parent, all you want to do is make your child feel better. At times it could be a guessing game with trial and error before we are able to make him feel better, which breaks our hearts.
School
Choosing the right school for any child can be challenging. Finding the right school with the resources for Chase, limits your choices. When Chase was enrolling, the school district did an evaluation to see what needs Chase would require. Some don’t know that there is a difference between a Special Education Program and a Special Needs Program. Only a handful of schools provide a Special Needs Program. Luckily, the Seattle area provided the programs needed for Chase to attend.
The Special Bond
When Chase turned 21, he graduated from high school. The Special Needs Program is only eligible for people up to the age of 21. With no available programs for adults over 21, Dave and Chase began spending a lot of time together, entering into an unbreakable bond. The two of them would go everywhere together. Dave embraced the idea of always having fun and making sure he and Chase were living their life to the fullest and sporting those big gapped tooth smiles. From Mariners games, to a round of golf, to a quick drive around Seattle in the Corvette, they were together.
An Unexpected Loss
In 2015, Chase lost his best friend. His attitude immediately changed but he couldn’t tell us what he was thinking. Did he understand? Did he know his dad wasn’t coming back?
While we grieved, we had to come together to figure out how we can help Chase move forward. As Chase sat and looked out the window, which seemed to be him waiting for his dad to show up, we discussed our next steps and the upcoming challenges our family will be facing.
Bridge of Promise
For adults with disabilities, it is very hard to find something after high school they can go to and enjoy for the day. We were looking for a community and program that provided a fun, social interactions with others. Something Chase can go to and feel like an independent adult. We heard about a program called Bridge of Promise. Their mission is to provide engaging recreational, social and educational opportunities for all individuals with developmental disabilities. This was the perfect fit for Chase. He went to this program three days a week and enjoyed swimming, interacting with others and endless field trips to new places each week! After finding Bridge of Promise, we saw Chase enjoying life, smiling and laughing again!
Staying Active
It was so important for us to continue to do the things Chase loved to do with Dave. We committed ourselves to taking endless car rides with Chase. Loni would take Chase for a ride everyday, even began documenting it on Facebook called “Travels with Chase”. We went to Mariners games as a family, Trent took Chase golfing often, road trips to California and taking him to Bridge of Promise. As time passed by, we were able to see Chase thriving.
Physical Therapy
We enrolled Chase into Physical Therapy that he attends on a weekly basis to help improve his mobility. Moving Chase can be a difficult task, especially for Loni as she is much smaller than Dave was. Physical Therapy provides Chase with a new form of exercise to keep him healthy, active and in turn help improve his posture, eating habits as well as his general mobility and independence.