Our daughter, Ellen Rasmussen, is a 21-year-old REACH client in Haines who continues to thrive and grow.
REACH started its outreach in 1987, the year Ellen was born. Bobbi Figdor, a REACH employee, began Infant Learning Program services through home visits, traveling to Haines from Juneau. Her visits were a balm of encouragement for the three of us and were structured to support our vision for an active family life.
Ellen arrived 12 weeks prematurely, a surprise birth at home, in the depths of winter (nearly minus 20 degrees Farenheit). After a five-month stay at Providence Hospital, we were finally able to bring Ellen home on oxygen and a heart monitor.
Ellen's diagnoses include Down's syndrome, cerebral palsy and cortical visual impairment. She is nonambulatory and nonverbal, but these challenges did not negate our vision in Bobbi's thinking or practice. She believed with us that an active family life was not just a future hope but would be elaborated upon with each new experience and sensory opportunity.
Much of how we relate was gained through observation of Bobbi's work with Ellen. She communicated clearly, allowing Ellen time to anticipate the next move. Bobbi empowered Ellen by respecting her delayed response time. Bobbi's biggest gift to us as parents was the repeated belief that we were the best advocates for Ellen that she would ever have.
Transitioning into the Haines School District was a huge project. Bobbi, other REACH specialists, my husband and I met with and trained school staff in a variety of settings in order to plan and implement a smooth transition. This comprehensive approach was instrumental in Ellen receiving a rich, motivating and inclusive school experience. During this time Ellen began year-round weekly music enrichment/therapy with Haines musician and teacher, Nancy Nash. These sessions continue to this day and Ellen is ecstatic when the one-month annual break is over, and she, her caregiver and Nancy can get back to music, one of Ellen's greatest loves.
Our intent for Ellen to attend public school in our neighborhood (a five-minute bus ride) rather than traveling to the full school services in town (45 minutes by bus) was aided by REACH support. This smaller school environment was more protective of Ellen's general health.
Audiotapes containing greetings, class songs, activities and stories proved to be great medicine when illness kept her at home or in the hospital. Many times, Ellen received a large manila envelope chocked full of school-made get-well cards. These demonstrations of peer affection are met with an outpouring of enthusiastic body language, smiles, and happy sounds from Ellen that let her friends know and see that they are an integral part of her loving her life.
Ellen's happiest transition came in the form of a new role at ages 5 and 7. She relished the addition of her brother and sister, and their gains have encouraged her own.
In listening to her siblings practice for their piano lessons, she was fond of pointing out mistakes using a specific vocalization with the meaning, "Play it again. Hard work pays off!"
REACH's Respite Care Program added regular opportunities for swimming, walks, music and hippo therapy (horseback riding). Ellen uses her peripheral sight, and her other senses are keen, registering tone of voice, body language, smell and the quirky mannerisms that make each of us unique.
It was logical to us to plan for a natural timeline toward independence at 18 years of age. We wanted to be more available to Ellen's siblings as they began to near their teens, and the physical toll of Ellen's full care was greater as we aged.
REACH again put its resources to work on Ellen's behalf, and a planning team met for a Visioning Meeting in our home. Family members were encouraged to share our hopes and desires for Ellen so that these goals could be met.
Although there are no facilities in Haines that are equipped for the constant care Ellen requires, we have always believed staying in Haines was essential to Ellen's physical and mental well-being and for adjusting well to independent living. We were concerned that the transition might increase negative behaviors. The comprehensive aspect of this meeting gave a fuller understanding to all involved.
The summer Ellen was 18 she moved into a bright, cheery apartment on the ground floor, close to downtown Haines. Suzanne and Patrick, of our local REACH office, have played an integral role as fellow advocates for Ellen's independent living here in Haines and in her successful transition. It was incredibly helpful that most of the REACH staff starting in her new home had provided Respite Care in ours first.
Ellen is eligible for one more year of schooling. She will relocate this fall from her beloved Mosquito Lake School and friends to our new school campus in downtown Haines.
Not so far in the future, we think there may be another meaningful transition for Ellen. She is so social that we've advocated in the past for a REACH Assisted Living Home in Haines. REACH is supportive of the concept and has given parameters for the number of consumers needed to keep it self-sustaining.
My husband, Greg, and I are deeply thankful to the REACH organization and to our many friends at REACH for all their support. REACH has been helping Ellen with transitions all of her life. A cross stitch in Swedish hanging on Ellen's apartment wall sums up her current experience with independent living. Roughly translated it states, "Your Own Hearth Is Golden."
• Marianne Rasmussen is a homemaker, leather and textile worker and Sunday School teacher, who just completed her 25th season batting fourth and pitching for the Diehards, a local women's softball team.