Emily’s Story

It’s hard to know where to start when telling Emily’s story. We don’t often have a chance to step back and reflect on our journey of raising a child with special needs. After reflecting for a while, I have come to the conclusion that Emily’s Story, our family story, is one that ultimately leaves me with feelings of gratitude, warmth, and love.

Emily is 18 years old and the oldest of our 3 children. She was born while we were living abroad in England. Like so many new parents we were filled with the excitement and anticipation of expecting our first baby. It came as a shock to us when she was born prematurely at 30 weeks, and not only did we have the terrifying experience of a premature birth, Emily was born with several concerning health issues.

During the first few months of her life, we were just thankful that she had survived her birth and was continuing to progress. However, after the first year, Emily had difficulties thriving and seemed to slow with her developmental milestones. She had feeding issues, which we felt contributed to her slow development. It wasn’t until the early preschool and elementary years that it started to seem like there was more going on with Emily and that she would be on her own developmental path in life which was anything but typical.

We were blessed to welcome Emily’s brother Timothy to the family 11 months after Emily was born. During the next few years of Emily’s life and the first few years of Tim’s life, they functioned very much like twins. They were the same size for a period of time. They ate, slept, and played on the same schedule, and developmental milestones were even met in unison– solidifying their bond as siblings. On a number of occasions, Tim pushed Emily as she grew and developed. They took their first steps at nearly the same time, they played on the same soccer team, they learned to ride a bike on the same weekend and they were able to share some of the same High School experiences even though they went to different schools.

Our youngest daughter Sarah was born when Emily was 4 ½ years old and added a new dimension to the family and Emily’s social structure. Sarah was not the peer that Tim was. She was the younger sister who Emily could help take care of, whether it was helping change a diaper or push in the stroller. As they got older, they shared a bedroom together and developed a sisterly bond.

As parents, we tried to treat Emily the same way we treated Tim and Sarah. It was important that they all learned the same core values that we believed in — family first, respect for one another, hard work, dedication, integrity, and honesty just to name a few. Further, we wanted to ensure that Emily shared similar experiences as her siblings. We have had the good fortune of the ability to travel, and Emily would always enjoy the family bonding that would happen on all of our trips from a weekend up to Lake Tahoe to a cruise to the Bahamas. In many respects, our family life is quite normal.

Although it was difficult to realize that our child would was not on a typical path of development, we knew how important it was to make sure she knew about all the wonderful skills she was born with. Emily has a wonderful rote memory and went through school as a conscientious student. She excels with rules and routine and once those things are established, she is able become more independent. Emily was able to complete elementary school in a typical classroom setting with supports, and proudly graduated from Amador Valley High School last year with a high school diploma. Emily has grown to become a competent and respectable young woman and is part of the Futures Explored Film School in Livermore where she is learning many valuable vocational and life skills to continue to prepare her for her future. Emily is a hard worker who although struggles socially, enjoys being with people, friends and family, and finds humor in our daily activities. Emily enjoys family life and appreciates family dinners and outings, and shares a special connection with our family dog. One day she hopes to live independently and each day we see more and more signs that this is a real possibility.

The Sunflower Hill organization represents an opportunity for adults with special needs to continue to develop life skills and live independently. The vision and goals of the organization will begin to help address the concerns of parents with adults with special needs. Specifically, for someone like Emily, she can continue to develop social skills and begin considering a life independent of her parents. Sunflower Hill represents a progression of independence and a social network for adults with disabilities. Whether she’s able to take advantage of social programs, day activities or housing alternatives, we believe that Sunflower Hill will be a valuable resource to Emily, as well as our region and community. We are excited to support Sunflower Hill and be a part of its success.

Emily has taught us many valuable lessons in life. We have learned to appreciate what makes our life unique and that we have the courage and support to face the unpredictable challenges that life hands us. We have learned to appreciate our family and all the support that they have offered us through the years. Emily is fortunate to have grown up with 4 grandparents, and an extended family of aunts, uncles, and cousins that all look out for what is in Emily’s very best interest. As Emily transitions into adulthood, we look forward to what this next phase will bring, we look back in awe on how far we’ve all come, and each day we feel lucky to have Emily Wong is our lives.

Written by Penelope Wong

Bruce’s Story

Who would have known that a young boy, adopted at the age of three would rally a family and open new doors to life? When I was 10 years old, my parents sat my brother and I down and asked us if we wanted a baby brother named Bruce. Of course, we said. We were thrilled! When Bruce came home, we learned that he did not talk, but he could hug. We would hug him and he would not let go.

Bruce quickly became incorporated into our family and into our very large relative base. This meant he went to all our activities including Girl Scouts, Boy Scouts and all “group family events.” And to our benefit, we got to go to all of his Special Olympics activities. As my brother and I got older and our activities lessened, Bruce’s Special Olympics activities grew. He was involved in floor hockey, basketball, track & field and downhill skiing. He went to the county meets and even to the US Games in South Dakota for skiing. My parents became extremely involved in Special Olympics and it became our social life for many years. I was even his coach for 10 years! We all loved it!

When Bruce was 30 he moved into a group home and came home on weekends to live with my parents. Bruce’s interests and social activities continued and we loved it. My dad and Bruce had lots of projects continuously going, building tile trays, hot plates and windmill planter boxes. They were always either in the garage working with their tools or in the living room watching the A’s or Raiders play.

Four years ago when my father passed away, Bruce came home to live with my mother, who is battling short-term memory loss. With Bruce’s ability to remember everything and mom’s forgetting all events in the last five minutes, they are an incredible pair. Mom gets Bruce going each morning, even though Bruce is definitely not a morning person. Bruce keeps Mom company and helps her remember things, like where her purse is, if she fed the dog, what day it is, etc. He is incredible with the iPhone, calling me whenever mom needs something or when something is wrong. Bruce loves his iPad and he can tell you about any local or national event. He also loves to listen to fire calls on his iPhone and read books on “How to Be A Fireman” that our fireman friend gives him.

Bruce has held several jobs, including washing cars for the Richmond Police Department and being a bus boy at Denny’s. He is currently enrolled in the Film Workshop in Livermore and we just attended a three-movie premiere at Bankhead Theater. Bruce also participates in Special Olympics track & field, softball, basketball, and floor hockey, and his favorite activity is golf. He even won a gold metal last year in the Northern California meet. He is also in involved in Pleasanton’s Recreational Activities for the Developmentally Disabled (RADD), Program, which allows him to try new activities and visit exciting places almost every weekend. He loves to learn about new places and try different activities. I frequently joke with him about having a busier social life than his sister.

Last year Bruce turned 50 and we celebrated by getting box seats at the A’s game with our extended family. We had his name put in lights so everyone could celebrate. It was a wonderful social occasion we’ll never forget.

But the reality is that one day Bruce will eventually have to live on his own. That’s why a community like Sunflower Hill is so important. My very social brother has been such a blessing to our family. My wish for him is to be with friends and in a supportive environment that embraces his desire to be active and interested in new things. My parents always told Bruce he was special because we got to pick him, but in reality, he picked us. And I can’t imagine a more special gift or what our lives would have been without him.

Written by Debi Zentner

Audrey’s Story

Where to start? I feel like this is one of those times when someone asks you to talk about yourself a little, and you wonder, “Do I tell them that I like cats and be done with it? Do they want me to tell my life story?”

Again, where to start? Well, my name is Audrey Mumper and I am an intern with Sunflower Hill. I love to color, sketch, read, write, sing, laugh, help others, and go grocery shopping. (Yes, you read that correctly.) I also love Disney, Harry Potter, Sherlock Holmes (the book version), and Pokémon.

I also have high-functioning autism (surprise!) and attention deficit disorder (ADD). My eye contact is poor, although it can be pretty good with some of my friends and relatives. I have the compassion and patience and empathy of a crocodile. (I got a kitten to help with that.) My facial expressions are okay, though sometimes what I’m feeling in my head doesn’t correlate with what I’m expressing on the outside. The best way I can describe it is, there’s a cord connecting the inner and outer emotions and it’s been broken and it never got fixed. I could spell 8th grade words in 3rd grade. I can memorize pretty much every line in a Disney movie (if I’ve seen it recently). Disney songs are my jam; I could tell you which movie, or Broadway show, the song is from, as long as it’s not an obscure one like Bedknobs and Broomsticks.

Some other stuff about me is that I have been a Special Olympics athlete for 10+ years. I have received an AA degree in Social Science from Las Positas College, although it was not planned and it took 4 years. It was at Las Positas where I discovered my passion for forensic anthropology. I transferred to Humboldt State University in the Fall of 2013 to pursue a degree in biological anthropology. Unfortunately, I was overwhelmed by both the heavy academic load and my family’s high expectations and left HSU after 2 years. I think I would eventually like to go back to college and try again.

When I was younger, I didn’t think I was too different from everyone else…but once I got older and started to understand the world a little more, I found out that, while I really wasn’t too different from everyone else, I was different. For a while, I started to resent my condition. “Why can’t I be “normal” like almost everybody else? Why couldn’t my brain understand things at a “normal” rate? Were my friends really being my friends, or were they just pretending for my sake? Why did I have to be different? Why? Why? WHY?!?!?” If I may be honest, there are times when I still resent it. There are times when I feel like it’s holding me back. I hated getting the extra help that an RSP class and Disabled Students Center are supposed to provide. The only two things I really liked was the extra period I got to start and/or finish homework and Priority Registration. I didn’t want extra time to take tests, I wanted to be like everyone else. I didn’t want someone else taking notes for me, I wanted to be like everyone else. I just wanted to be like everyone else.

Then came Sunflower Hill. Sunflower Hill Board Member and my Special Olympics basketball coach, Jon Elfin, was at our house discussing plans for the Sunflower Hill community in Livermore (I actually live a block away from the site). I was taking time off from school, looking

for a job (with no success), and at that point, was just needing something to do. Jon brought up the Sunflower Hill Gardens out at Hagemann Ranch and said they were always looking for more volunteers. I thought, “Hey, I’ve always wanted to help people. This could be my chance!” I’ve been volunteering since October 3rd, 2015, and have been having the time of my life. I have learned so many new things since volunteering and interning with Sunflower Hill, but most of all, I’ve seen changes in myself. The best example I have is my leadership skills. Before, I would have been terrified to lead a group of kids and one or two of their staff in a task. Now, as long as I know what I’m doing, I can lead a (reasonably sized) group of kids and their staff without getting too nervous. My mom says she now sees me as a more confident and outgoing person.

Sunflower Hill has helped me realize that I am just like everyone else. I have my strengths and weaknesses, I also have my quirks and irks. Just like everyone else…Just like everyone else.

Joshua’s story

Sports and team sports of all types, is what drives my grandson, Joshua, from one day to the next. He checks on team scores and standings the minute he gets up and it is the last thing he does before he goes to bed, sometimes sneaking a look during the night. He knows team players by their numbers rather than their names. Remember when #19 played for the A’s, he asks? He loves baseball, basketball and football (A’s, Warriors and Raiders are the local favorites) but will cheer for other teams as well depending on who is playing and what team everyone else doesn’t like. He loves to talk sports with anyone that is willing.

While this might not sound unusual for a typical 17 year old young man, Joshua does not remember letters and recognizes numbers only as single digits with no value attached so he can’t tell which number is higher in a final score. He doesn’t read so he has learned to recognize teams by their mascot/logos/colors but often has to ask who won the game based on the scores. Did the red team with the bird win or did the green team with yellow stripe win, he asks?

He doesn’t understand the game rules but uses visual cues and verbal information to pick up the basics for the game and the terminology, and uses those same skills to navigate the world around him, trying to meet expectations that are often beyond his grasp. He gets frustrated when his family isn’t as observant and didn’t notice the car we passed with the rival school bumper sticker or the plane on the tarmac with the broken wing. Seeing the world through Joshua’s eyes gives his family different and amusing perspectives about everyday events and life in general.

At 18 months, after numerous day long sessions with electrodes and being tethered to a machine, he was diagnosed with epilepsy, with many seizure types occurring on an hourly basis; each seizure erasing memory and affecting other brain functions. Josh currently has success with a mix of seizure medications and devices to control the seizures with the minimum amount of side effects which can be as difficult for Josh as the seizures themselves. It is an ongoing struggle as getting too tired, catching the flu or having a growth spurt can cause increases in seizure activity leading to life threatening visits to the ER followed by more trial and error with the medication mix. Josh also has developmental delays which contribute to the memory and learning issues.

Joshua family life is a bit unusual as he lives with his Mom and me and we tag team his participation with Special Olympics practices, games and tournaments, and other sporting events. We often have to research game rules to understand enough to explain to Joshua what is happening during games. ‘Why does one hockey team have less players than the other team,’ he asks? Like many typical kids or teenagers and their grandparents, he and I have formed a great bond – which he often uses to his advantage! But I love that and hope our bond grows even stronger as he continues into his adult life.

While Josh participates in many Special Olympic sports activities, he really just wants to be ‘one of guys’ on his high school sports teams. ‘When can I be on the junior or varsity team?’ he asks? It is hard to explain that while he looks just like ‘one of the guys’, he won’t ever be able to be a player on the high school teams. He currently does have a role with the high school baseball team to help with the team equipment and be with the team at their practices and games. This allows him to wear the uniform, ride the bus to the games and hang out with the players in the dugout allowing him to be ‘one of the guys’ for a brief period of time.
When Josh becomes an adult, he wants and expects to be able to live independently and work in his community just like other young adults. It will be one step closer to being ‘one of the guys’ that he so desperately want to be.

Written by Kathy Layman