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Training and Education for Parents and Staff Learning Together
Adapted from Autism Spectrum Disorders from A to Z
by Barbara T. Doyle and Emily Doyle Iland
Parents can be the best, lifelong asset of a person with autism or other disabilities, through commitment to his or her welfare. "Knowledge is power" is true in the case of families with a person with an ASD. Parents need information about the characteristics of autism, educational and treatment options and strategies to improve daily life. Parents want to know what services are most appropriate for their child, how to get them and what their role will be to ensure progress. Parents need help planning for the future, getting services and finding support persons.
We often hear complaints from staff that parents do not know what they need to know. We hear from parents that staff do not know what they need to know. We hear both staff and parents complain that they do not understand one another and do not use the same terminology or have the same knowledge base. Why is this a surprise? Across the country we have seen the practice of separating parents and staff for training. It is time to do things differently!
In reality staff often need to know the same information that parents do. The practice of training parents, teachers, aides, respite workers, adult agency staff and others together makes sense. Training that is held for staff and educators should be made open to parents. Since both parents and professionals are working in the best interest of the individual, they benefit equally from opportunities to learn more and work together.
Parents are the true team leaders across the lifetime of their children. Parents need to be encouraged and taught how to exercise their leadership role within teams. Joint training for professionals and families helps everyone develop compatible skills and vocabulary for effective teamwork. Parents and professionals can practice the courtesy and skills of active listening, providing feedback and checking intent and understanding during the communication process.
Sometimes staff object that they will not be able to "express themselves fully" in the presence of parents during training. That can be a symptom of a deeper problem in communication. If staff cannot ask questions or make comments in the presence of parents, they may need to find a better, more acceptable way of framing their ideas and issues. This does not mean avoiding the truth. The presence of parents can cause all of us to say what we mean, be clear in what we mean, and say what is defensible. If staff and parents have problems in communication, training together can focus on topics such as taking emotionally charged words out of communication, focusing on building on current strengths, active listening, dealing with conflict, recognizing underlying emotions, etc.
Here are some options for schools and agencies for providing opportunities for training that includes parents, family and staff:
1. Ask parents and staff in the community what topics are most important to them for training. Use the information to plan training events and select speakers.
2. Assess and meet families' needs related to training such as transportation, childcare or the need for training to be held weekends or evenings. Ask for volunteers in your community to help you meet these needs. Many religious and civic groups are happy to help.
3. Videotape each training session (with permission) and create a training video resource library available to staff, families, students and others.
4. Audiotape each training opportunity (with permission) and create an audiocassette resource library.
5. Create lending libraries on various subjects of interest to parents and staff.
6. Arrange for parents and staff to participate in training via video teleconferences.
7. Find public or private sources of funds such as regional centers, "wrap-around" services, foundations or stipends and grants to pay for trainers. There are many such resources in every state.
8. Offer to waive fees for some parents to attend conferences and other topics.
9. Hold local training sessions with trained professionals from local schools or agencies.
10. Ask people to volunteer to come to open training meetings and share what they have learned.
11. Offer meeting rooms or conference rooms for training purposes.
12. Arrange for special courses at nearby regional colleges or adult education centers.
13. Invite local experts and professors from area colleges to speak to parents and staff.
14. Teach parents and staff how to use the Internet, or ask your local public library to provide Internet training and to allow them to access equipment if needed.
15. Provide specific one-to-one training. This is relevant in cases, such as, when a behaviorist is required to intervene in cases of self-injurious or dangerous behavior. The parent must be individually trained in what to do and how to do it, to reinforce and respond in a consistent manner.
16. Set up "parents teaching parents" sessions when parents take turns sharing techniques and strategies with one another.
A Case Example from Barbara
I work with a fantastic director of special education services, Mrs. White. Mrs. White is a creative and dedicated person who drives herself and her staff to provide the best possible services. She is extremely creative in finding and using resources, including the resources that parents bring to the district. Training in her district is almost always open to staff and families. Requests from parents for specific programs or strategies for their children with ASD are not judged as not possible, but rather as a possibility to be pursued.
When Johanna first began to work as a director of special education, with her openness and willingness to learn and change (and cause staff to do the same!), there was some resistance. How could we express ourselves, staff said, if parents were present? How could parents express themselves if staff were there? How could she expect overloaded and overwhelmed staff to learn more and do more than they already were doing? There were heated discussions, always within the bounds of common courtesy, as everyone "regrouped" and learned to think more openly about roles and responsibilities.
Over time, the resistance faded as parents were recognized as knowledgeable and as capable contributors and as staff were given opportunities to learn and grow and teach, sharing their extensive knowledge. As Mrs. White learned more from her parents and staff, she planned for even more innovative and exceptional programs to be implemented, staying within the budgetary limitations imposed on her by the administration. She demonstrates that parents are not "them," but rather just another kind of "us."
It is a delight for parents and staff to live and work in her district. One mother told me, "Mrs. White saved my mental health. It was not so much the changes that were implemented but more the way she truly acknowledged me as a person who could know something of value and as a mother with high hopes, not symptoms of denial. She helped the staff understand my perspective and that was a tremendous relief to my whole family."
Finally one of the best reasons to train staff and families together is because so many staff are family members of people with special needs and so many family members of people with special needs are also professionals in the field of special services. Maybe it is time to eliminate this artificial barrier and become lifelong learners, one and all.
Barbara T. Doyle, MS is a clinical consultant and co-author with her sister Emily Doyle Iland of ASD from A to Z (a Spanish language edition of the book is also available). For more information about the book, go to http://www.asdatoz.com.
You may contact Barbara by email: btdoyle00@insightbb.com or by writing to #1 Forest Green Drive, Springfield, Illinois 62711. Barbara's website is http://www.barbaradoyle.com.
Emily Doyle Iland, BA, is Barbara Doyle's sister and mother to Tom, Lisa and Danny. She has actively learned to help herself and her family understand Autism Spectrum Disorders (ASDs). She is paving a path to support her son in educational and social settings. She now works as an educational consultant and advocates for professionals, families and children, sharing her knowledge and experiences to support and inspire others. Emily is the California Representative of the University of Minnesota's Yes I Can Program for Social Inclusion. Emily is also working on the CLEAR Project to promote safe interaction with Law Enforcement and Prevent Involvement in crime. Emily is bilingual in Spanish, is translating ASD From A to Z into Spanish, and is available for speaking engagements in English or Spanish! Contact Emily at emilyiland@socal.rr.com.
Copyright © 2003 Barbara T. Doyle and Emily Doyle Iland
Posted in 2003 with permission of the authors by:
New Horizons for Learning
http://www.newhorizons.org
E-mail: info@newhorizons.orgThe Special Needs area of this website is sponsored by the
Office of State Superintendent of Public Instruction
Special Education
P O Box 47200
Olympia, WA 98504-7200
(360) 725-6088
Fax (360)586-1631
E-mail: dgill@ospi.wednet.edu
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