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by Judy Seligman-Wine
We had a meeting with several other parents. One of the fathers was very skeptical and even belligerent about his daughter communicating with AAC. To my great surprise I rose to the occasion and gave a long explanation of the importance of communication and AAC. The next morning at breakfast, my son began a conversation with me using his communication chart. He asked if it was going to rain. At long last he was actually initiating communication. I couldn't believe the coincidence.
—Mother of 4-year-old boy
Was this a coincidence? Clinical experience has shown that family members, including parents, siblings, and often even grandparents, are most frequently the key players in determining a successful outcome for augmentative and alternative communication (AAC) implementation with children. Implementation of an AAC program into the daily routine provides the child who is severely delayed in speech and/or language development with the strategies to communicate and interact meaningfully and effectively.
Yet it cannot be taken for granted that a family can automatically implement an AAC program with a child, just because the communication professional has prescribed this approach as part of the child's educational-therapeutic intervention program. Families require support in a multitude of areas to facilitate their children's use of AAC strategies.
The importance of early intervention in all areas of rehabilitation is continually being stressed. Children who develop normally frequently say their first words before their first birthday. With many children in need of AAC, we initiate this intervention in the form of choice-making between objects and in the use of voice output for requesting an object or saying "more" at around 1 year of age or even earlier. In this stage, however, many of the families of children in need of AAC intervention—particularly if this need is associated with a physical disability—are still struggling with the acceptance of the child's disability.
Mourning and Acceptance
The need to go through the mourning stage as a prerequisite for acceptance has been discussed in the literature. Frequently we are asking families in this stage to use an unfamiliar form of communication that sets their child apart as being different, and that requires learning and effort and even additional expense—at a time when they are still struggling with acceptance. For many families, the introduction of AAC is interpreted as a final diagnosis that their child will not speak—a harsh sentence that is difficult to cope with.
We must stress to parents that both clinical experience and research (Cress & Marvin, 2003; Cumley, 2001) indicate that the use of AAC does not preclude the development of speech. As SLPs, we must continue to work on the development of the child's oral and speech skills, together with the implementation of AAC strategies. It is essential that we provide assistance and support to enable family members to accept and use the recommended AAC strategies. This encouragement can be through discussions, education, and support groups with other parents—both those who are in a similar stage and those who have already been through the process. Groups for grandparents and also for siblings are also highly valuable.
We must be constantly aware of the families' needs, concerns, and fears in order to provide meaningful and relevant support. It is often important to repeat the same information over and over; the information that family members will absorb at a given time is a function of their state of acceptance at that time.
Working Through the Details
Parents must be members of the AAC team, at all levels of assessment and implementation (Beukelman & Mirenda, 2005). All family members, and siblings in particular, have much to offer in terms of vocabulary selection. Families frequently come to the table with a considerable amount of knowledge about the various AAC tools available. It is our job to help sort through this information to determine the strategy most appropriate for the specific child based on age, disability, and other factors. This new role is one that we as professionals are in the process of learning.
After an assessment, families receive recommendations on many issues, including the AAC strategies to be used at the outset (speech output, communication chart, computer, etc.); the most appropriate graphic system (PCS, Blissymbols, written words, etc.); the initial vocabulary to be used; the suggested method of access; and communication settings. Families learn the details of the communication program, but these details may be difficult to retain and process. This same information may perplex the family later on, and slow or stop the implementation of the program.
We play a critical role in setting priorities with the family and working through these recommendations. If we don't, the wonderfully detailed report we have painstakingly written, complete with detailed recommendations for developing the AAC intervention program, may lie neatly folded in a drawer and the child may not experience the benefits of using AAC strategies.
In-home Training
Once an AAC system has been prescribed and developed for a specific child, the parents and other family members are expected to communicate with the child using these tools—but neither parents nor child has a model for communicating through the use of AAC strategies. We not only ask the families to respond to the child when he or she uses the AAC system to communicate with them, we also frequently ask them to use the AAC tools when they communicate with the child, to develop the child's receptive language and to model AAC use. But how can we expect families to model the use of these strategies when they do not have experience in this area?
It becomes our role to provide "facilitator" training. We can provide this training in a clinical or educational setting, but in my experience the most effective training takes place in the home, with as many family members as possible present. In this way, we model ongoing interaction with the child. Sibling participation enhances the sessions, as these interactions are often the most natural and interactive. An added benefit is the empowerment of the child who is communicating with AAC—the child becomes the center of attention and the one controlling the situation, leading to enhanced self-image and self-confidence. Witness the following scene:
R., a 12-year-old girl with multiple disabilities, has some snacks to share with her brother and sister. She has three simple voice output devices in order to say to whom she is going to give a snack—her sister, brother, or herself. She knows that to be polite, she must give to each of them before she takes one for herself. Her sister and brother each want to be selected first—they start whispering in her ear "choose me first," "you chose him last time," etc. R. is enjoying every minute of this, and is laughing and teasing them.
What power, what control, what empowerment! What fun for the SLP!
Teaching Advocacy
Parents of children who communicate using AAC frequently do not know how to advocate for their children's rights to obtain the services and equipment they need. The parents are frequently overwhelmed by the child's disability, the demands on them as a result of the disability, and the need to approach myriad public offices and service providers to obtain the needed services. Parents may be unaware of their children's entitlements and rights, the eligibility requirements for public funding, or the governmental sources to approach, nor do they know how to advocate for public funding to help in the purchase of AAC services and equipment.
Parents often either rely on the professionals working with their children to advocate for them, or they simply surrender rather than fight for their rights. It becomes the responsibility of the professional working with the family to provide the tools that empower these families to advocate for their children. We have provided classes for parents of children who communicate with AAC (Seligman-Wine, 1998) that include presentations on developing advocacy skills and the rights of persons who communicate using AAC. The speakers included representatives from the National Insurance program; the Ministries of Health, Education, and Social Welfare; a community advocacy center; and the National Human Rights Center for People with Disabilities. The most significant outcome has been parents' change in attitude, as they become proactive in demanding that funding for AAC services and equipment be made available for their children.
There are likely additional areas in which professionals working in the field of AAC are able to provide support to families of children who are communicating using AAC. Regardless of what they may be, we must remember that the support we provide to the families is often one of the critical factors contributing to the successful outcome of AAC intervention and
implementation in young children.
Judy Seligman-Wine is a speech-language pathologist and an augmentative communication consultant at the Mish'aul Center for Augmentative Communication and Assistive Technology in Jerusalem, Israel. She can be contacted at winej@netvision.net.il.
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