Ben's Profile
Benjamin Schroeder Smith was born on December 14, 1984 in Minneapolis, Minnesota. He learned to walk at nine months old after spending many winter months in a playpen. He developed a vocabulary of sixty words and was able to sing/vocalize the alphabet up to the letter K. Since Ben's father is deaf, he also communicates in sign language. His first signed words were "milk, " "crackers, " "home, " "bathe, " "eat."
Discovery at 23 months old
Since both parents work, Ben was taken to a day care provider in the neighborhood. Soon the provider complained about Ben's behaviors and she said that she was not spending enough time with other children. We started to see some of the same autistic-like behaviors at home. Examples are like: flapping his arms, walking on tiptoes, obsessed with unusual toys — windmill, shoestring, phone cord. While he was learning to communicate in sign language with his father, the father noted that Ben was also forgetting what he learned the day before (e.g. "hot, " "cold"). As we looked back, we found that we had done or stumbled onto many of the right things without knowing it. (i.e. the physician had applauded us for getting Ben a mini trampoline at age one and we have seen multiple benefits over the years).
Diagnosis at 30 months old
The news-shattering day came during a visit with the family physician, Dr. Margaret Conroy. After several clinical tests, she informed us that Ben fit the description for having a pervasive development disorder (PDD), which we later learn is another term for autism and autism-like behaviors. However the road ahead seems (and has been) formidable, we credited Dr. Conroy for steering us into the little known approach called sensory integration activities.
Health Status
Today Ben has a diagnosis of Autism and Mental Retardation estimated to be in the severe range. Ben is ambulatory but he requires 1:1 supervision. He has recurring bouts of eczema and foot fungus. His dietary intake requires close monitoring due to a mild lactose intolerance. He experiences respiratory distress which seems to be seasonal and allergy related. He requires verbal and physical assistance with most of his daily living skills. He experiences frequent bouts of urinary incontinence. Since Ben is nonverbal, he uses sign language and pictorial symbols to communicate. He has significant behavioral challenges. He engages in self-injurious behavior, is physically aggressive, destroy property, strips, urinates in inappropriate settings, smears feces, and wanders off. He has no street safety or survival skills. He requires behavior management, occupational therapy, speech/communication therapy services. He is now enrolled in a special education classroom for autistic children in the Minneapolis Public Schools.
Vitamin therapy and sensory integration
After the confirmation of a disability, the following months find us shuttling back and forth for sensory integration activities and more answers at the Minneapolis Children Medical Center. It was there that we had the good fortune to meet other parents of autistic children in support group meetings. Temple Grandin visited us once and shared her childhood experiences with us and others. With the advice from the parents and the professionals, we tried to experiment with vitamin therapy. We found little success with Ben. In December 1998, Ben is given 1mg of Respiderdal for restful sleep.
Communication
By a stroke of luck, Ben's Dad attended the National Autism Convention in 1995 as a division representative. It was at this convention, more was learned about the velcro-type communication book which gives autistic children choices as they communicate their needs. We are indebted to the Delaware Autism Program for sharing their expertise with us. When we combine the book with the use of sign language, we knew then that we would see some meaningful communication. Consequently, we saw that we could reduce some of the self-injurious behaviors that had stemmed from lack of communication. Lately we see Ben do some dyslexic signing — "thank you, " "pizza, " "watch video."
Involuntary Placement
Since December 21, 1991, Ben was been placed with a group home that strives to meet the needs of children like Ben. In the beginning, it was a place located 19 miles away from home. This was no easy decision for the parents to make. It was mind boggling and heart-aching not to have Ben home with us. Staff at this first group home is credited for helping Ben to understand more about the world around him. Some of his accomplishments during his years there include assistance with cooking, some success with toilet training, planning for the day with a velcro-type communication book and participation in adaptive physical education, adaptive music/art.
School
Ben is now enrolled in a special education classroom for autistic children with the Minneapolis Public Schools. We have a consensus here that a program that offers Ben multiple choices is regarded as the most appropriate program. Again with the aid of the communication book and verbal prompts, Ben rides the school bus. As mandated by special education laws, he gets curb-to-curb transportation. Although there have been some incidents on the school bus ride, we feel that it is still a safe form of transport. We continue to stress that paraprofessionals be included with others for updated training. Not enough good things can be said for the teacher and other staff who work with Ben. We believe that the positive environment was made possible by extensive staff training and a thorough understanding of how to communicate with Ben, involving the use of sign language and pictorial symbols. Ben is now involved in a musical/dance group at a nursing home 1x a week, recycling 1x a week, delivering newspapers 1x a week, swimming 1x a week, and adaptive art 1x a week.
Answer
Obviously after many years of re-writing the individual education plan and the individual service plan, we learned the hard way that the answer lies in appropriate programming and meaningful routines. We as parents cannot begin to tell you how many hoops and hurdles we have jumped to get to where we are now. If we fail to say nothing of the many heart-breaking moments and times of despair would be a disservice to all the other parents who are in the same boat with us. We are certainly grateful for friends and family members who have assisted us thus far.
Contacts with Ben
Both parents visit Ben, take him home for day visits and outings. His mother lives close to the residence, so she is able to drop in often during the week. Both parents usually call the staff on a daily basis to get an update on Ben's day. (Ben's father calls through the Minnesota Relay Service.) Ben is able to spend time with his brother when he visits his family. Ben usually sees family almost every weekend. Both parents attend school staff meetings and have been actively involved in program planning for Ben with the residential staff.
Group Home
Ben is living with three other young men within comparable age range who are also autistic and mentally retarded in a single family house. The house is owned and managed by Meridian Services, Inc. Meridian provides the day-to-day services to Ben and other residents under a contract from Hennepin County-Developmental Disabilities Unit. While everybody does his/her best to meet Ben's needs, we find that at times, it becomes more than a daunting task. And there are some things that Hennepin County will not fund or cannot sponsor. We would appreciate additional financial assistance to enhance the quality of life for Ben. For example, we could use help to purchase a pair of snow boots, YMCA membership, summer camp fees, and gasoline for some outings to see the Christmas lights and other sights. At present, we have not been able to create an account in Ben's name at Meridian Services, Inc. Therefore, I will recommend that if you do wish to contribute, you might want to consider buying "gift certificates" in Ben's name for the items that you have in mind. Thank you.
If you wish to discuss this further or if you have questions, please email your inquiries to: Jake2200@hotmail.com. We will do our best to respond to each inquiry.
Ben S. Smith
Diamond Lakes Home
Meridian Services, Inc.
5721 13th Ave. South
Minneapolis, MN 55407
