A Residential Autism Program that Works

By Rebecca Maddocks-Wilbur, Program Supervisor, KidsPeace residential Autism Program, Maine

According to Executive Director of KidsPeace New England Jean Dickson, This program has brought both great challenges and great joy to this campus, the kids, the staff and to the families of the children involved. Rebecca Maddocks-Wilbur, ASD Program Supervisor, has poured her entire being into this program and has worked hard with her staff, the families and the kids to continually improve and perfect this program. These kids have opened the eyes of many of us on campus as to the joys and sorrows of autism, but the commitment and love shown to these kids by all on campus has been one of the most incredible experiences I have ever been involved in. Sometimes, it is very difficult to put into words, or show in data, what is happening in this program, but you need only look at the staff members’ faces as they work with these kids, and that truly says it all.

What began as a vision just a few short years ago has transformed KidsPeace New England Graham Lake Campus, located in Ellsworth, Maine, to the home of residential and day treatment programming for children with autism. It has also transformed all of us in so many different ways. The work is difficult and fast-paced, but, at the same time, it has allowed us to slow ourselves down and experience the joy of working with children on the autism spectrum and their families. The simple things, once taken for granted in residential treatment, are now events for the KidsPeace staff, the kids with autism and their families. Events like birthday parties for kids who previously would not be able to gather with peers to share the event, beach parties and swimming, kickball games with kids not on the spectrum, the climbing wall and community events. The many challenges faced have been greatly overshadowed by these rewards reaped in working with the children and their families. The success of the program is in large part due to the staff members responsible for working with the children. We would be remiss to not mention these direct care counselors and classroom educators responsible for the day-to-day, face-to-face care given to the children. It is their work that allows the children to flourish, to demonstrate growth and to experience successes unseen previously. We are extraordinarily grateful to them for the work and dedication they provide to each child.

The Vision
KidsPeace asked Maine officials what their most critical residential programming needs were and learned that many Maine children with autism were receiving services out of state. Everyone agreed that Maine needed a program that would bring these children back to Maine, provide appropriate services and allow them to be closer to their families. This program currently serves 14 children with an autism spectrum disorder and involves their families in all areas of treatment. KidsPeace crafted a proposal detailing the philosophy, goals, services and the instructional framework to be used to meet the individual needs of each child. Special attention was given to embracing the families in as many areas as they were willing and able to participate. In October 2007, after eight months of planning, the KidsPeace Autism Spectrum Disorder Program at KidsPeace New England opened the first of two units, and the journey began.

The functional abilities of the children served vary enormously. The overarching goal for every child is to attain the highest possible level of functioning across all domains – communication, social/emotional, activities of daily living, independent living skills, prevocational and vocation skills, to name a few. KidsPeace identifies and builds upon existing skills and works to replace unsafe or non-functional behaviors with those that will keep the child safe and positively occupied. Additionally, we seek to transfer the structure and routine established through the program into the family home and provide support to parents in carrying plans out in the home environment

Not All Roses
The launch of any new program brings about unanticipated challenges, and our first six-bed ASD unit experienced the ebbs and flows one may expect. Working with children with autism or PDD or DD is intense. The depth of knowledge and experience to effectively treat and work with an autistic child is unending. Providing direct care staff with the proper information and training in digestible and useable segments is certainly a challenge, and every child and family is unique based on values, experiences and challenges.

Most children who are accepted to the KidsPeace ASD Program have behaviors that can no longer be adequately managed in the family home because they require a parent to remain awake all night to ensure safety. As children with self-abusive, aggressive or severely delayed ADL or life skills grow older and larger, their behaviors become much more difficult to manage. For many children, the need for placement is the result of growing problems with aggression and, sometimes, significant injury to parents, siblings or the child.

Length of stay is highly variable and related to severity of need/functional ability, availability of skilled support and crisis services in the home community and level of progress in attaining criteria for discharge, primarily related to eliminating behaviors that present safety concerns. The briefest stay to date has been approximately six months. Some children have been here since the program began and will require adult services when they age out.

Children with an ASD do not learn the same way as others. Their landscape of the world is painted in unfamiliar colors. The world may in fact appear as a dizzying array of ungrounded items floating haphazardly in and out of view. Words don’t hold the same meaning. Social approval is not a primary motivator. Their needs and scattered skills range from severely delayed to truly exceptionally gifted. There are tendencies and commonalities, but these children prove that, although they are all on the spectrum, they are not all alike. That is the beauty of this group and of this program. We have learned the value of slow and proper transitioning and intense planning to limit surprises, which has allowed for more roses and fewer weeds.

As programming improvements and adjustments continued to take hold with the first six-bed program, we realized that the need for additional residential programming remained. Before a year had passed, there would be a second ASD proposal drafted, which broadened the age range served, extending to children as young as eight years old. In October 2008, the second six-bed ASD residence opened, and all six beds were accounted for prior to November 2008, with the last child transitioning in mid-January 2009. In July 2009, we flexed from 12 licensed ASD beds to 14. At this time, all 14 beds are full, with a waitlist of three children requiring this level of care and treatment. All children in the ASD program attend school and maintain a highly structured program utilizing interventions identified through the ITT process and IEP process.

A typical daily schedule

Time Period    Monday-Friday Schedule
6:00-6:30    Wake Up
6:30-7:00    Dress, Daily Living Skills: clean room, toileting, tooth brushing
7:00-7:30    Medications & Sensory Activity: walk or other gross motor activity
7:30-8:00    Transition for breakfast/toileting
8:00-8:30    Breakfast
8:30-9:00    Pack bag, light off, trans to school
9:00-9:30    School Schedule 8:30-2:45
9:30-10:00    Toileting time
10:00-10:30    Sensory- Proprioceptive/Joint Compression Academics
10:30-11:00    Physical activity academics
11:00-11:30    Toileting transition for lunch
11:30-12:00    Toileting
12:00-12:30    Sensory Activity: choices
12:30-1:00    Toileting
1:00-1:30    Academics
1:30-2:00    Choice making
2:00-2:30    Toileting, begin prep for transition
2:30-3:00    Meds, pack bag, toilet, to unit, transition to residence
3:00-3:30    Coats off, put away belongings, snack, Sensory- Proprioceptive/Joint Compression Transition for upcoming activities
3:30-4:00    Activity or choicemaking - 3 options,
Transition for bath time
4:00-4:30    Toileting, put laundry in washer,
bathe, transition for dinner at 4:30
To lodge to get dinner
4:30-5:00    Dinner
5:00-5:30    In rooms-quiet play or chore time (laundry, vacuum, clothes away)
5:30-6:00    Free time-phone calls, socialize, relaxation activity
6:00-6:30    Toileting
Activity/YMCA swim or choice making
6:30-7:00    Relaxation activity
Board games, sensory, TV or activities in rec room or common area
7:00-7:30    Relaxation activity
Board games, sensory, TV or activities in rec room or common area
7:30-8:00    Toileting, Meds, in rooms time-quiet activity
8:00-8:15    Tooth brushing & toileting
8:15-8:45    Story time, to sleep
9:00-9:30    Sleep

We Give Back To You…
Tim* came to us with extreme academic, peer and family relationship difficulties. Upon arriving into our program, he was highly aggressive and had a high frequency of property destruction. He loved his family and they loved him, but his presence in the home was overwhelming and ultimately unsafe for all. Sibling relationships were devastated. The KidsPeace Therapeutic Interventions included: Introducing a highly structured routine; reducing stimulus; providing calm, firm, well-grounded 1:1 staffing; recognizing and programming for extreme processing and intellectual deficits that were not readily apparent; providing very simple, basic, clear and achievable expectations and systematically rewarding every approximation of the goal behaviors that move that child in a positive direction; modeling and teaching (through social stories and scripted teaching) appropriate social and communicative behaviors; and following every required undesirable or difficult task undertaken with a highly rewarding opportunity of interest (i.e., an opportunity for choice-making, participation in a preferred sensory or recreational activity, a long bath, time to play electronic games, etc.). Treatment Outcome: This young man rarely has an aggressive incident that requires more than a verbal redirection. He has a job on campus that he loves, and he excels at it. He participates in the “Kids Give Back” Community Service Program and works one day every week at the land preserve. There he clears brush, maintains trails and birdhouses and is helping to create a beautiful place for children and families and the community as a whole. Tim has made tremendous strides. Tim is probably not going to own a business and will likely always need some level of support. That is okay. There is more work ahead, but right now he is able to talk and laugh with his sibling. They even took a walk to the store together on a recent visit. They like each other again. There is hope in all things after all.

Tim’s story is but one. There are 14 children. There are 14 different stories of progress – stories of hope, stories of transformation. It started with a vision and a desire to help children who are truly in need.

Special Thanks
The State of Maine was, and continues to be, very supportive of the ASD programming at the Graham Lake Campus. KidsPeace offers a special thanks to those individuals locally and in Augusta for keeping a kind eye on our efforts and assisting when any snags arose. 

*Name changed to protect privacy

Rebecca Maddocks-Wilbur is the Program Supervisor of the KidsPeace Graham Lake Autism Spectrum Disorders Residential Program in Maine. She is a parent of five children, including a very bright and gifted adult son with Asperger’s. Rebecca has a degree in Human Services: Developmental Disabilities and a BS in Elementary Education with a Minor in Psychology. She has worked in many capacities over the past 27 years and, for 21 years, worked with transition age and adult services for the developmentally disabled, including folks with Autism Spectrum Disorders, dual diagnosis MR/MH, brain injury and with people with a variety of co-occurring diagnoses. Rebecca was a trainer for the Direct Service Professional  (DSP) Course and was certified as an Employment Specialist/Job Developer and Job Coach serving transition age and adult clientele. She was also an Agency Investigator of Adult Abuse and Neglect for the State of Maine.