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Written by Penelope Wong
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.