Trellis SCIDB Project Update

T r e l l i s

~ supporting the development of children who are deaf-blind as they grow at home, at school and in the community ~

Reflections on Deaf-Blindness

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Young Deaf-Blind Leaders

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Introducing Elaine Sveen

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How do you want YOUR Trellis?

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The Powerful Sense of Smell

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Utilizing the Sense of Smell

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Mark Your Calendar

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The Magic Happened There!

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INSIDE THIS ISSUE:

The best and most beautiful thing in life is

friendship that springs out

of the heart, as fragrances out of a flower.

~ Helen Keller

If “friendship is the best and most beautiful thing in life,” then the South Caro-lina Interagency Deaf-Blind (SCIDB) Project has been especially lucky! Tracy Makison has been a very good friend to children and youth with dual sensory loss throughout the state of South Carolina. Serving as the SCIDB Project Director for the past two and a half years, Tracy has succeeded in expanding awareness of Project services among families and professionals. Her leader-ship of the Herbert Center Initiative (see Autumn 2010 Trellis) resulted in a significant increase in use of individualized calendar systems in classrooms.

Beginning this summer, Tracy took on a different role as Program Manager for the brand new Cochlear Implant Program at the South Carolina School for the Deaf and the Blind (SCSDB) in Spartanburg. Tracy’s kindness and exper-tise will be greatly missed at the SCIDB Project, but we are all excited for her and confident she will develop a wonderful program to support communica-tion and access to learning for students who have cochlear implants.

While we bid farewell to one old friend, we have the extreme good fortune to say hello to a new one. We are delighted to welcome Elaine Sveen, Ed.S., as the new SCIDB Project Director. Elaine has a strong background in educa-tion for students with visual impairments, dual sensory loss and complex dis-abilities. She has worn many hats at SCSDB, and has already become a tre-mendous asset to the Project. Please see page three for a special message from Elaine.

In the meanwhile, Project work has continued with three guest lectures in University of South Carolina graduate level courses for individuals preparing to become teachers of students with visual impairments, the Project Direc-tors’ Meeting in Washington, D.C. and the 10th International CHARGE Syn-drome Conference in Orlando, FL, which was attended by two families from South Carolina. See page seven for their reactions to this amazing event. In addition, the National Consortium on Deaf-Blindness sponsored a four-day training on “distance technology” that will improve our ability to provide follow-up services for families and educational teams across the state.

This issue of Trellis offers several articles about the sense of smell, which is, of course, extra important in the absence of optimal vision and hearing. Try to be aware of opportunities to help your child experience and enjoy the unique smells of autumn—apples, pumpkins, or roasted marshmallows around the campfire on a chilly evening—whatever means “autumn” to you and your family. May it be a safe and happy season!

Autumn 2011

by Kate Beals, OTR/L, Technical Assistance Specialist

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Reflections on Deaf-Blindness: Hands & Touch Webcast

The following notice regarding a webcast created by Perkins School for the Blind is from Vibrations, the newsletter produced by Colorado Services for

Children and Youth Who are Deaf-Blind, Winter 2010-2011 issue. It is recommended for viewing by parents and professionals who serve children

and youth who have combined vision and hearing challenges.

In this webcast, Barbara Miles, a well-known author and lecturer, discusses the unique function hands serve for individuals who are deaf-blind. For people with vision and hearing impairments, hands become eyes, ears and a voice. Barbara’s realization that hands have so many critical roles changed the way she interacts with the hands of children who are deaf-blind. The webcast is available at:

http://support.perkins.org/site/PageServer?pagename=Webcasts_Reflections_on_Deafblindness

Advocacy and leadership were the focus of a recent summer course from the College of Professional Studies and Outreach's (CPSO) Burstein Leadership Institute. "Deaf-Blind Young Adults in Action” (DBYAA) brought together 12 aspiring leaders from around the coun-try, as well as uniting several important institutions. CPSO teamed up with the Helen Keller National Center (HKNC) in New York City, Texas Tech University, the American Association of the Deaf-Blind, and the American Foundation for the Blind to offer the course.

During the five-day program, participants, ranging in age from 19 to 28, learned about current advocacy efforts. They also strategized to bring greater awareness and policy change to their own states and re-gions. Last summer, students in the course landed an audience with President Barack Obama. While this year's group was not able to visit the commander-in-chief, it did touch two policy hubs. The group ven-tured to Capitol Hill to meet with representatives of the U.S. Office of Special Education Programs and the Federal Communications Commission.

Both the on- and off-campus environments were ideal for these young leaders, said Suzanne Ressa of HKNC, who ran the program with Dr. Amy Parker of Texas Tech. "DBYAA is very grateful to Gallaudet University for providing us with such an accessible location for our program." Ressa added that the uni-versity's strategic location put them all in enviable proximity to lawmakers. In addition, participants could easily interact with people they met on campus and see others with the ambition of understanding the po-litical system and having a lasting impact. "Smooth access, smooth communication," Ressa said, summa-rizing the experience, "and they feel they are part of a larger community by being here."

The group had a chance to meet prominent members of that community on June 18 when President T. Alan Hurwitz and CPSO Dean Joseph Innes visited a session. Dr. Hurwitz told the participants that their work had personal significance for him. Many of his friends, he explained, are members of the increas-ingly active deaf-blind community. He acknowledged that although individuals who are deaf-blind face challenges, they can also wield political influence.

President Hurwitz and CPSO Dean Joseph Innes (center right and left) stand with participants and coordinators of the

course Deaf-Blind Young Adults in Action (DBYAA) on its final day, June 18, in the

Jordan Student Academic Center at Gallaudet University.

TRELLIS

Young Deaf-Blind Leaders Visit Gallaudet University

This article is from the Gallaudet University website, Summer 2011. You can read more about the participants at:

http://www.hknc.org/DBYAA_2011_ParticipantBios.doc

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please complete this form, clip it out and send it to us at: South Carolina Interagency Deaf-Blind Project 355 Cedar Springs Rd., Spartanburg, SC 29302

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How do you want YOUR Trellis?

Introducing Elaine Sveen, New SCIDB Project Director

Welcome to Elaine Sveen, the new Director of the South Carolina Interagency Deaf-Blind Project. While Elaine is new to the Project, her experiences include a blend of public school and specialized schools for the deaf and blind, including direct services and ad-ministrative work. She has always chosen associations with students who are deaf or deaf-blind and worked in dual-sensory schools such as Minnesota, Virginia and South Carolina.

In addition, Elaine worked to support initiatives involving deaf-blind students by being part of the leadership team for the Deaf-Blind Connec-tion in Minnesota and most recently worked at South Carolina School for the Deaf and the Blind’s Cedar Springs Academy (formerly Her- bert Center) to support the development of best-

practice communication strategies for students with multiple disabilities. Elaine’s professional interests in-clude transition services, collabora-tive work with service providers and the development of parents and their skills in support of student achieve-ment.

She wishes to share the following remarks with Trellis readers: “I am hon-

ored to have this opportunity and sad to see Tracy Makison leave the Project.

She, however, is moving on to very important work developing a program for students with cochlear implants. She accomplished many out-standing things with the Project and I know that I am following a true professional in the field. I look forward to learning more about the families and schools that we serve.”

Elaine Sveen, Ed.S.

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The Powerful Sense of Smell By Gloria Rodriguez-Gil, M.Ed., Educational Specialist for California Deaf-Blind Services

This article is from reSources, the newsletter of California Deaf-Blind Services, Volume 11, Number 2, Spring 2004.

Several years ago I was shopping at Macy’s in New York when sud-denly I smelled something familiar, and I immediately thought of my childhood doll, Lucy. You see, I had not thought about Lucy for years, much less that Lucy had been my favorite doll when I was growing up in Spain. Looking around, I realized that I was in the store’s toy section and that I was very close to a stand of dolls. Out of curiosity I reached out for one of the dolls. On the box it said: “Made in Spain”.

This experience was incredible to me—that something so far back in my memory could be brought to the present by something so fleeting as one smell! Years later I recalled this incident when I learned that the part of the brain responsible for our sense of smell—the limbic sys-tem—is related to feelings and memory.

In order to make sense of what smell is and how we can think of using it in our work, let’s first explore how the sense of smell is put together.

How the Sense of Smell Works The sense of smell, just like the sense of taste, is a chemical sense. They are called chemical senses because they detect chemicals in the environment, with difference being that smell works at dramati-cally larger distances than that of taste. The process of smelling goes more or less like this:

1. Vaporized odor molecules (chemicals) floating in the air reach the nostrils and dissolve in the mucus (which is on the roof of each nostril).

2. Underneath the mucus, in the olfactory epithelium, specialized

receptor cells called olfactory receptor neurons detect the odor. These neurons are capable of de-tecting thousands of different odors.

3. The olfactory receptor neurons transmit the information to the ol-factory bulb, which is located at the back of the nose.

4. The olfactory bulb has sensory receptors that are actually part of the brain which send messages directly to: a) the most primitive brain centers where they influence emotions and memories (limbic system structures) and b) “higher” centers where they modify conscious thought (neo-cortex).

5. These brain centers perceive odors and access memories to re-mind us about people, places, or events associated with these olfac-tory sensations.

It is important to add that: “Our sense of smell is 10,000 times more sensitive than any other of our senses and recognition of smell is immediate. Other senses like touch and taste must travel through the body via neurons and the spinal cord before reaching the brain whereas the olfactory

response is immediate, extending directly to the brain. This is the only place where our central nervous system is directly exposed to the environment.” (von Have, Serene Aromatherapy)

The Sense of Smell and the Limbic System The olfactory bulb is one of the structures of the limbic system and a very ancient part of the brain. As mentioned in the previous descrip-tion of the olfactory process, the information captured by the sense of smell goes from the olfactory bulb to other structures of the lim-bic system.

The limbic system is a network of connected structures near the mid-dle of the brain linked within the central nervous system. These structures “work together to affect a wide range of behaviors including emotions, motivation, and mem-ory” (Athabasca University, Ad-vance Biological Psychology Tutori-als). This system deals with instinc-tive or automatic behaviors, and has little, if anything, to do with conscious thought or will.

The limbic system is also con-cerned with translating sensory data from the neo-cortex (the think-ing brain) into motivational forces for behavior. The limbic system is centrally involved in the mediation between a person’s recognition of an event, their perception of it as stressful, and the resulting physiological reaction to it, medi-ated via the endocrine system. Stimuli are processed conceptually in the cortex, and passed to the limbic system where they are evaluated and a motivational response is formulated.

What does this have to do with our field? In the field of deaf-blindness, we have always known that many children who are deaf-blind have a very sensitive sense of smell to compensate for their limited use of vision and hearing. Conse-quently, we have always said that the sense of smell plays a key role in this population for identify-ing people, places, objects and activities.

The following statements are heard frequently in this field: avoid wearing strong fragrances because they can elicit seizures in some children; use the sense of smell to provide additional information (olfactory cues) to the child about what is about to happen to the child, e.g., bringing a bar of soap close to the child’s nose before taking a bath to tell him that soon he will be taking a bath; or to wear the same soft scent every time you work with a particu-lar child so he can recognize who you are by this smell.

All of this is very valuable information. The sense of smell is a strong sense for identification purposes and can have a strong impact in your brain because it is such an integral part of it (to the point that strong chemical smells can definitely elicit seizures).

But what about the role the sense of smell plays in relation to children’s moods, levels of arousal, emo-tions, memories and physical reactions? Now we know that they are connected. Many times we are

with a child and we can’t understand what is going on with him. He can’t tell us in a formal way. Maybe he is fussy or crying or smiling and we don’t know why. Why is he having these behaviors? Could it be about something he smells? We don’t know. We definitely know we should be paying more attention to this environmental factor to see if and how this is affecting the child.

I still have questions relating to the impact of the sense of smell in children who are deaf-blind and whether we can use this sense to our advantage, e.g., the use of consistent olfactory cues that might provide information a child could use to better un-derstand what is happening, or eliciting a specific response from a child using a specific scent. Are children who are deaf-blind with neo-cortex lesions more strongly impacted by the sense of smell be-cause they might depend more on the information processed by the limbic system? Can we help a child become more alert or less overexcited using a particular scent? Can we calm a child using oils that have a calming soothing scent?

Conclusions Even though we don’t know exactly how children who are deaf-blind are impacted through their sense of smell, we know this sense is very strong and ba-sic. When interacting with a child who is deaf-blind we should be aware of the environmental odors that might be affecting the child’s behavior. Ideally we should be pairing an odor with its source so the child can make the connection between what he is experiencing and its concrete referent.

As an educational specialist in the area of deaf-blindness, it would be interesting to work with a team that includes a neuroscientist and an aroma-therapist to find ways to use the sense of smell to the benefit of children who are deaf-blind.

The emotional connections and memories attached to a smell can be very personal; it seems to be in-trinsically enmeshed with the individual experience. I am certain that if another person had been walking with me that day through Macy’s, he or she would not have noticed the doll’s smell. And on perceiving the smell, he or she would not have thought of my doll, Lucy, or felt the same feelings I had with this experience. But strong memories can be encoded and become accessible through the natural work-ings of the sense of smell. It may be possible to create theses links to help open another avenue for communication with children who are deaf-blind.

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http://kidshealth.org/kid/htbw/nose.html#

Please note that this graphic is from a different source than the article. Source website address is below diagram.

TRELLIS Page 6

Utilizing the Sense of Smell In Children and Youth with Deaf-Blindness By David Brown, Educational Specialist, California Deaf-Blind Services

This article is from reSources, the newsletter of California Deaf-Blind Services, Volume 11, Number 2, Spring 2004.

Most of us have heard these kinds of stories. A child with significant visual and hearing impairments always becomes very upset when being taken into the hospital building even though he cannot possibly have seen and recognized the building nor understood, from spoken conversations, that he is being taken to a hospital. An-other child becomes excited and begins to salivate as lunch is being cooked in the room next door, even though he has not seen or heard the food being pre-pared. An older child routinely searches for the hand of every new person who enters her classroom and lifts it to her nose to sniff, then she either drops the hand and walks away or she smiles and embraces the other per-son. When a girl with profound disabilities is allowed time to smell the dish of lavender-scented oil that is al-ways used in her weekly massage session, her eyes open wider, she becomes gradually more animated, and she breaks her customary silence with quiet vocali-zations. All of these are examples of ways in which the sense of smell can offer vital and meaningful informa-tion to children with deaf-blindness.

Some children with deaf-blindness have no sense of smell (we think that this is the case with many children with CHARGE Syndrome, for example), and others do not appear to show any awareness of the sense even though it may be intact and working. In other cases chil-dren give very clear evidence that smell is an important sensory input for them, as in the examples mentioned above, and many children show levels of environmental and social awareness that are surprising and perplexing to us (like the boy upset by hospital visits), until we real-ize that their sense of smell must have given them the essential information they needed for this awareness and recognition.

Sometimes people involved with a child with deaf-blindness think of using smells in a deliberate way to help the child know what is going on, and in these cases the following guidelines might be helpful.

1. Helping the child to become more aware of smells that are already present in existing environments and regular routines might be a useful thing to do, and there are usually many more of these routine smells around than we realize. Time spent explaining and thinking about this and discussing your ideas with others should be helpful.

2. Any ideas about introducing new smells artificially should be treated with caution. If the smell is not al-ready an integral part of the activity it might in fact be a

distraction from it. Since the smell is being introduced artificially it might also be difficult for everybody to re-member always to introduce it consistently and appro-priately, and to remember exactly which smell is to be used with which activity.

3. Many smells released into the atmosphere remain perceptible for a very considerable period of time, and they cannot be ‘put away’ like we would switch off a light or a music box, or remove a “feely” toy from a child and put it in a drawer. If too many different smells are artificially introduced in one place they will blend to-gether, which could cause confusion and distraction, and might even be a potential health hazard (depending upon the type of smells being used). Everybody in the room will be exposed to these smells, not just the child for whom they are intended. It is reported that the sense of smell “tires” and the nose begins to lose its sensitivity after exposure to three or four different smells in suc-cession (Sanderson, Harrison, and Price, 1991, p.18).

4. All of us have hypersensitivities to certain smells and to certain intensities of smell, and, while some children with deaf-blindness may demonstrate these hypersensi-tivities with obvious adverse responses, others might not be able to let us know that they are suffering. (For more information on hypersensitivities see www.handle.org/miscinfo/environ.html.)

5. Hypersensitivity might be reduced if essential oils are used to provide the smell rather than an impure source like an aerosol spray or some other type of air fresh-ener. Essential oils are powerful chemical substances, however, so should only ever be used after consultation with an aroma-therapist.

6. Essential oils can be used in massage sessions, and this is one activity where it seems like a very good idea to introduce a consistent smell in the massage lotion to help to “label” the activity for the child with deaf-blindness. If used in a massage lotion these oils will be absorbed both through the nose and through the skin so it is particularly important to consult an aroma-therapist and to follow all safety guidelines. For massage purposes any essential oil should always be greatly diluted in a bland vegetable oil, and the dilution needs to be greater for young children than for adults. Many specialists recommend that no essential oil be used in massage lotion for the very youngest infants, and then only essential oil of lavender or chamomile be used with children (both of these are said to have calm-ing, soothing properties).

Our family had the most amazing experience that we have shared with our son. We attended the 10th International CHARGE Syndrome Confer-ence in Orlando, FL. My son, Andrew, is 8 years old and until this year we have never been in-volved with the CHARGE Syndrome Foundation or attended any of the conferences. We see now what we have been missing! It was the biggest celebration of life that I have ever seen. Everyone looked past wheelchairs, hearing aids and walkers and just saw children—all having the time of their lives!

In his closing remarks, David Brown [see article on page 6] said that we had come from all over the world on a pilgrimage for one reason: our love for the people we know who have CHARGE Syn-drome. We were able to make the most amazing connections with total strangers because we were all alike. We all had fought the same fight and we were all there for the same reason. You could sit down to dinner at a table with someone you had never met before and talk as if you had known one another forever. We found out that we are not alone. There are others out there who understand

Andrew Delaney, age 8, from Kingstree, SC. Andrew and his family went to Orlando, FL to attend

the 10th International CHARGE Syndrome Conference in July.

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The Magic Happened There!

My husband and I, our son who has CHARGE Syndrome and his younger sister, had the great privilege of attending the 10th International CHARGE Syndrome Conference in Orlando. This was our first international conference. We are so glad that we went, and with the whole family! While the kids were in their own “camp” programs, my husband and I decided to divide and conquer the classes to attend as many as possible. We learned a great deal and have some new ideas to help our son’s progress. For example, we are especially excited about doing further research into the Language Acquisition through Motor Planning (LAMP) program for augmentative communication. Our son is non-verbal and communication is a major issue for him.

We also enjoyed meeting families and professionals from all over the world. Interacting with so many others who un-derstand our life challenges was refreshing and enlighten-ing. We traded ideas and shared our experiences. Our kids enjoyed their programs while we were in class and had a great time. My daughter saw her first magic show and attended her first luau. My son enjoyed playing with all the musical toys and climbing in the tents and tunnels in his class. The conference was a very rewarding experi-ence for us all and we hope to attend the 2013 conference in Arizona! ~ Erika Watts, Columbia, SC

The most amazing thing was to see the kids perform at “CHARGE Idol,” a talent show that was held on Friday night. For that evening, the complex disabilities associ-ated with CHARGE Syndrome were the last thing on anyone’s mind. The contestants were truly amazing. Some modeled, some sang, some danced and some played instruments. The little girl who won performed a song in sign language. They all earned their trophies by letting themselves SHINE!

I learned so much about Andrew in such a short week-end. The life lesson that I will take from all of this—and the reason that I cannot wait to do it again—is that I learned that my son is "normal." Andrew is a normal child with CHARGE Syndrome, and that is OK. I am so happy to be able to tell him, "I love because you are you, not because of what you should be; but most impor-tantly, I love you because you belong to ME."

~ Minnie Lee Lambert, Kingstree, SC

Two South Carolina families share their thoughts on the 10th International CHARGE Syndrome Conference

11th International CHARGE Syndrome Conference

July 25-28, 2013 Scottsdale, Arizona

South Carolina Interagency Deaf-Blind Project 355 Cedar Springs Rd., Spartanburg, SC 29302

~ supporting the development of children who are deaf-blind as they grow

at home, at school and in the community ~

www.scsdb.org Outreach Services

Phone: 864-577-7770 E-mail: SCDeafBlind@scsdb.org

Funded through award H326C080022 by the US Department of Education, OSEP

Trel l is

Mark Your Calendar! SC Interagency Deaf-Blind Project Family Connection of SC

March 23-24, 2012 Family Connection Conference Columbia, SC

The South Carolina Interagency Deaf-Blind Project has joined hands with Family Connection to present a series of workshops related to sensory disabilities at the Family Connection Conference in March 2012. The sessions will be appropriate for parents and professionals who serve children with vision and/or hearing challenges, and children with multiple disabilities. Please plan to join us on Saturday, March 24, when we will offer the sessions described below, and gather for lunch at a special seating area arranged for families who have a child on the SC Deaf-Blind Census.

Meet My Amazing 3-Year-Old: Parents as Leaders in the Transition from Home-based to School-based Services: Parents can learn to take the lead in ensuring that their young child’s individual strengths and needs are clearly identified and communicated to new teachers and service pro-viders during the transition from home-based to school-based services. This can begin long before the child’s third birthday! “Reach for the Stars” is a highly effective method developed by the Director and Coordinator of the Kentucky Deaf-Blind Project, and published by American Printing House for the Blind. The “Personal Communication Passport” has been used extensively in the United Kingdom and by California Deaf-Blind Ser-vices. Both of these methods can be used for children with any combination of disabilities, and are particularly effective for children who have dual sensory loss. Diane Haynes, M.Ed., State Coordinator, Kentucky Deaf-Blind Project, Adjunct Faculty, University of Kentucky.

The Impact of Vision Loss on Motor Development: Vision loss or impairment in a young child is more that just about the eyes. Vision is what motivates children to move, from lifting their heads up as infants to reaching, walking and running as they grow. Delays in achievement of motor milestones almost always accompany serious visual impairment. This session will explain the relationship between vision and motor development, and offer strategies to facilitate motor development in infants and toddlers who are visually impaired, blind or have combined vision and hearing loss. Margaret Gudka, PT, Director of Physical & Occupational Therapy, South Carolina School for the Deaf and the Blind.

CHARGE Syndrome: Overview of Medical, Sensory, and Developmental Issues: CHARGE Syndrome is a rare and very complex genetic disor-der that challenges families and professionals alike to find creative ways to help children communicate, and to engage in productive play, learning and self-care activities. In addition to providing a foundation of knowledge about CHARGE Syndrome, this session will give the families of children with CHARGE Syndrome an opportunity to meet one another and develop a network of mutual support. Kate Beals, OTR/L, Technical Assistance Specialist, South Carolina Interagency Deaf-Blind Project.

Hearing Loss and Early Language Development: When a child is deaf or has a hearing impairment, providing a strong foundation of language—whether spoken or signed—is very important. Given a strong language base, a child will be able to communicate with family and friends, and have access to information at home, at school, and in the community. Linda Kemp, M.Ed., NBCT, Teacher of the Deaf/Hard of Hearing, SC Depart-ment of Education Statewide Deaf/Hard of Hearing Consultant, South Carolina School for the Deaf and the Blind Hearing Outreach Program.

Our Mission To ensure that the individuals we serve realize maximum success through

high quality educational programs, outreach services and partnerships.

Our Vision To be the statewide leader in education and accessibility for individuals who

are deaf, blind or multi-sensory disabled.

Our Values Education. Accessibility. Partnerships. Leadership. Accountability. Diversity.

Teamwork. Relationships. Character. Independence.