Has anyone noticed that the number of children with hearing loss and additional disabilities has increased over the last several years? In my private practice, I serve primarily children and adults with hearing loss, and I'd been noticing that the referrals I was receiving were children and adults who were deaf and blind, or were deaf and had apraxia, or were deaf and had autistic tendencies. I started to think, "Is it just me? Are they sending only me the tough ones or is this a trend?"
In my research, I found a statistic from Gallaudet University that cites that approximately 20%-40% of children with hearing loss now have at least one other special need. That answered my question-it wasn't just me.
While serving these clients with multiple needs, I learned a great deal from parents and fellow professionals such as teachers of the deaf, occupational therapists, physical therapists, and interpreters. The following suggestions (beginning on page 7) are based on these experiences; however, we must remember that every client is unique and presents different challenges in developing communication. The clients with hearing loss plus additional special needs remind us to plan an individualized program for each one of them.
- Consider all possible communication options, including speech, sign language, finger spelling, tactile signing, and augmentative communication. Don't eliminate any option until it's been proven ineffective. One client I served who was deaf-blind did not develop intelligible verbal speech until she was 12 years old (long after some people had given up). But once she had intelligible speech, she was able to graduate from high school and go on to college.
- If sign language is used with a client, the signing space may need to be smaller to maximize visual acuity. The signs are the same, they are just made smaller.
- Take advantage of any sensory abilities-use any residual hearing or sight. Does the client have complete blindness and hearing loss? Many clients who are classified as deaf-blind are not completely deaf and completely blind. For example, one client with limited vision and hearing could see objects if they were placed in her peripheral vision, which proved to be very valuable to her learning. Also remember that a hearing aid or a cochlear implant does not transform the client into a hearing child. A great deal of aural rehabilitation must take place for the client to make sense of sound.
- Routines are crucial! Transition will generally be a difficult time for children with multiple special needs. Try to communicate any changes. One of my clients who is deaf-blind would throw tantrums after snack time. After discussion, his team concluded that if anyone without hearing and vision was being fed and then suddenly the food just stopped coming into the mouth, they would tantrum too. A tactile cue was created to signal the child that the activity was finished.
- Adapt learning strategies and activities to accommodate all sensory deficits. See "Learning Strategies" by Cindy Griffiths, who has worked extensively with children with multiple special needs, including hearing loss.
- Remember when working with these families that they are still a family first. Since many schools do not have social workers and since speech-language pathologists may know the child and the family best, clinicians may be in a position to encourage families to take vacations and participate in school functions and other activities. If necessary, help them find respite care or trained babysitters to stay with their child so that they can have a break.
- "Do not steal the parents' hope. Maybe you can't see what the parent sees. Without hope, what is there?" said Sally Ruemmler, who has a 23-year-old daughter who is deaf-blind.
- Get every team member involved with the education of the child. In addition to the SLP, the occupational therapist, physical therapist, teacher of the deaf, interpreter, school psychologist, and classroom assistant will all play a crucial role in implementing goals. An orientation and mobility specialist can help the client learn skills such as crossing a road safely. Consistency will make a world of difference. Schedule regular team meetings and/or set up a group e-mail so that everyone knows how the client is doing and what goals should be stressed. Voicemail also may be a valuable tool to keep communication lines open.
- Remember, children with significant vision loss do not explore the world. We must bring the world to them. Sally Ruemmler said, "Parents see the interpreter and the intervener as the eyes and ears of the child, helping to see their world more clearly. Without that, the child is all alone in the world."
- Don't be afraid to use the senses of touch and smell. As long as the client is not tactually defensive, touch can be a wonderful way to teach language.
- Use technology to the fullest extent. Hearing aids, cochlear implants, and tactile aids are just a few examples of how technology can help clients cope with hearing loss. There are many other materials that can help with vision loss such as large print books, computer software that enlarges print, and devices to magnify pages.
- Empower parents to integrate goals into every minute of their child's day. Most likely someone is bathing, dressing, and feeding this child every day. These are crucial times for implementing communication goals. SLPs can use examples of how enhancing the client's communication skills will make these tasks easier in the future. For example, the parent of a client was eager for her child to learn to communicate when he had had enough to eat so that he would not throw his bowl on the floor every time.
- Be enthusiastic about working with the child with multiple special needs. This family needs you and already they probably feel like their child doesn't belong anywhere. A child with hearing loss who also has autism doesn't fit in with other children with hearing loss alone and he also doesn't fit in with children with autism alone. Match these parents with other parents of children with similar needs, even if it is just through e-mail (see MUMS-Mothers United for Moral Support; www.netnet.net/mums). At the beginning of every conference with these parents, say something positive about the child and let the family know that you look forward to working with their child in the coming year. According to Cindy Griffiths, "For 25 years, I have worked with people for whom learning is hard. I honestly believe that success in education lies in respecting the student regardless of age or disability. I've learned so much from all of them."
- Celebrate small victories. A parent of a client who is deaf and has autism was delighted when his son finally entered the stage of the terrible twos. It didn't matter that his son was quite a bit older than that-he said he could finally share stories with other parents who had experienced a defiant child.
- Use all available resources including other veteran parents of children with multiple special needs. There are many resources for sharing information regarding deaf-blindness and other multiple special needs. Attend a conference or meeting of one of these groups to learn new strategies.
- Consider the role a sign language interpreter or an intervener can play. Be sure that the entire team understands the roles of these professionals. The book Best Practices in Educational Interpreting by Brenda Seal (1997, Allyn and Bacon) is an excellent resource to clarify responsibilities.
- When a team sits down for an Individual Education Program meeting, think about the importance of the material the child is learning. For example, one parent remembers her daughter struggling to learn the parts of an insect. Is this information vital for the child's future success?
- If the child uses sign language, be sure every team member can sign at least the core vocabulary. Be sure that everyone is using the same sign for each word or concept. If you don't know sign language, enroll in a class. It's not difficult to learn and you can earn CEUs for the class. Remember that a child can only learn what the team knows, so if a team member has a 10-word sign language vocabulary, the child is limited to those 10 signs.