Family Involvement: Family Centered Treatment at KidsPeace New England
by Jean Dixon
When the KidsPeace New England campus first began its residential autism program, one of the main focuses in the design was family involvement. This was new to us, but working with children on the autism spectrum has changed everything. These kids are different, and so are their families. As a result, they require a different approach. Parents and families of children on the spectrum are exhausted, desperate, afraid, seeking support of which there is very little in the community, frustrated, judged and too often discouraged and feeling “alone without hope” … their words not mine. But it is not just the autism families who are now involved in our treatment center. It is all families, regardless of the program.
I believe we do a disservice to ourselves and our families and their children when we label ourselves a “family centered treatment” center. I prefer “family involved” treatment center. That is really who we are and how we should be. It is the philosophy at the KidsPeace New England campus, and it is working. Parents and siblings are part of the KidsPeace family; better yet, we are more a part of theirs.
Some of our parents and families are on campus daily to see their children. One is on campus every morning during breakfast. One comes every afternoon and brings her other son to visit his brother. One comes weekly because the travel distance is so far. One parent just lost her phone and her vehicle, so we take the kids to her each day. She has two children in our program. Some of our Day Treatment parents stop into the school each morning to speak to the teachers and Ed Techs. But it is so much more than that.
We have one mother who is a beautician. She gives haircuts to all the kids on the spectrum who are not yet able to go to a barbershop or salon. She brings her other son with her, and he plays with the kids while his mother gives the haircuts. I remember one Saturday walking onto the residence, and several kids were at the table eating a snack. I looked at each one around the table and thought, “that one is not one of ours.” I then realized it was a brother and he was having such a great time with the other kids while his mother did haircuts. Family involvement at it’s finest.
A mother of one of our non-verbal boys requested we set up a computer on the residence for him so they can communicate with each other online and visually using webcam when she can’t make it to campus. Of course we did it.
Several parents come in weekly at dinnertime and eat with their children. One night, a parent brought her sister, two nephews and her other two sons to dinner. Her son is non-verbal autistic and was not able to sit at the table with his guests, but the family had a great time visiting at the table next to him. What is especially nice about these events is that they are not planned. The families are welcome to come at anytime to see their children. They do not need to call ahead, make an appointment or clear their visits with anyone. We encourage that, and they appreciate the open door and open hearts.
Some of the activities we offer are off campus. For example, for the past six years, we have volunteered weekly at Great Pond Mountain Conservation Trust, building trails, planting trees, building bridges and learning about the outdoors. Parents are welcome to join
in this activity with their children, and some do.
Parents are in the residence and on campus at any time. Many know the other kids’ names and all the staff member names. I have seen them redirect other children. That is comfort and that is the family involvement and atmosphere we strive for. What is really nice is when two or three of the parents are on campus at the same time, and they get together and chat in the dining hall over coffee. I’ve seen it, and it is as though they have known each other forever. They get their own coffee. They get their own snacks. They are family and need not ask. This is their home as well as their child’s. It works best this way.
One child with autism in our day treatment program was transitioned into our residential program last fall. If you think it is easy to release your child into residential care, this family can tell you different. We spent over two months preparing for the transition. We went to the family’s home, and his home workers came to campus. Our ABA staff worked with the family for months to prepare for the move. We duplicated his bedroom at home with his new room on the residence. Same wall color, same closet set up, same bedding, etc. We even created a separate living area like the one he had at home where he had a couch, TV, desk, etc. Again, same wall color. He began spending small bits of time in the residence during the day, then came to visit on the weekends, and finally he stayed. We invited his mother to spend the first couple nights. It was a wonderful and successful transition, and, frankly, it was as much about the mother’s comfort as it was the child’s. We felt good about that transition, and so did she. She is like family now.
Not all parents are involved. Not all can be. We make the effort to do all we can to get them involved. They are always invited. Sometimes families can only call in to a meeting, but the key is respect and inclusion, sharing and learning about their child from them, and teaching them what we have learned about their child. They have put their child in our care, and we have the responsibility to provide the best no matter how much they can or want to participate. Kindness and taking time to build relationships is just as important with the family as it is with the child.
Family involvement on the business side of KidsPeace New England is in place as well. We often invite legislators and guests to the campus to see and hear about our autism program. We have found that, if these visitors hear from the parents and families directly, they get a deeper understanding of the needs of both the children and the families. They tell their own story. We just give them the venue.
We were very fortunate this past summer to have Senator Olympia Snowe come to our campus. One of our parents joined us. She assisted in a tour of the facility, brought Olympia gifts her children had created, and brought to life what most people do not understand. She talked about what life was like for her with two children on the autism spectrum prior to coming to KidsPeace.
“KidsPeace saved my life.” She told Olympia. You don’t necessarily get that from a family centered treatment facility. You get that from a family involved treatment facility.
We love families. They have made KidsPeace New England what it is today and what it can be in the future for their children. We are now working toward establishing a Parent Advisory Board.|
Jean Dickson was with KidsPeace Graham Lake Campus from 1998 to June 2011 as the Director of Residential and Education Services. Jean has a Master’s degree in Recreation, Leisure and Sports, Bachelor degrees in English and in Mental Health and Human Services, and is pursing her Ph.D. in Human Services. She is a strong advocate for children with autism and their families, and is committed in promoting and ensuring family involvement in the services of children in care.