Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

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Friday, February 19, 2010

LONNIE’S STORY by Lonnie's Mom

Lonnie was one of those children who were admitted to Rainier School when he was barely fourteen years old. He will be sixty-two this year. He is the oldest of five siblings – one brother and three sisters. From the day Lonnie was born, he was extremely hyperactive and had an attention span of zero seconds. Elementary school class work was difficult for him. He couldn’t stay focused. Now, we call this syndrome dyslexia with ADHD, Attention Deficit Hyper Activity Disorder. For years Lonnie had difficulty falling asleep at night. When he was five years old he was diagnosed with epilepsy. The mild jerks that occurred while going to sleep were petit mal seizures.

Lonnie became increasingly frustrated as he approached adolescence and the severity of his seizures worsened. He developed severe behavior issues, and grand mal seizures. He was placed in a special education classroom only briefly before he went to live at Rainier School. Our family was so exhausted from caring for Lonnie for so many years!

Lonnie has done well at Rainier School and still enjoys the rich, social interactions of a community that is appropriate for his disability. He has more friends than anyone else I know. He has the freedom and safety of living on a college-like campus, cared for by people in all departments who are sensitive to the needs of medically fragile, multi-handicapped people. Everyone is considered a direct caregiver and is expected to provide expert service.

He is not isolated and restricted from the so-called “community". Rainier residents make trips to nearby shopping malls, zoos, fishing ponds, etc. and participate in community events as well as host activities on their own premises. Every resident is enrolled is some sort of vocational training or active treatment program. Lonnie is a grand example of what Rainier School has done for a person with such complex needs. It is appalling that anyone would want to take this away from him and the other Rainier residents. The current focus should be on expanding the critical services and living arrangements that Rainier School can provide to the many underserved, off-campus developmentally disabled people.

LOOK AROUND YOU! Small community developments have sprung up all over the Puget Sound area and country: senior retirement homes and nursing homes of all sizes and description; a multiple variety of apartment and condominium complexes with shopping and entertainment opportunities on the same property; recreation and medical complexes to meet special needs. All the places in the surrounding region wouldn’t have been built if they weren’t determined to be the most economical and efficient way to provide their special services. It seems to me that the planners of our Residential Habilitation Centers (RHCs) were ahead of their time with building facilities that were appropriate for our developmentally disabled citizens. The RHC community is appropriate for meeting all of their special needs – developmental, social, vocational, medical, nursing, psychological, recreational, behavioral, personal self-help, pharmaceutical, etc. It is puzzling how some in the developmental disabilities community think otherwise and persist with trying to persuade others to think like they do.

Many of us have experienced following the “modern twenty-first century” thought of placing our loved one in a “community” home. We tried placing Lonnie in one of the well-supervised, high-quality group homes for developmentally disabled people – twice. Both times I had to remove him immediately when I discovered that he was having increased seizures because of missed medication and was literally being placed in life threatening situations from lack of supervision. By the community advocates own words, deficiencies abound. If this sector can’t take care of the “least” vulnerable people, i.e. senior citizens, how are they going to cope with the “most” vulnerable? They will predictably end up in hospital emergency rooms, city and county jails and prisons, or in revitalized city morgues.
Jeannie B., Lonnie's Mom
(For Friends of Rainier link, see list at right)