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Listen to Alex’s Mom Talk About This Document: http://vocaroo.com/i/s13oF6Ci6x7i About Alex Hello, my name is Alex Foster. I am a laidback and fun loving 9 year old who loves swinging, rocking, playing in the water and having fun. My sign name is the letter ‘a’ (see picture) tapped on your chest (over your heart) 2 times.
Deafblindness Deafblindness is “a combined loss of both vision and hearing, such that neither of these distance senses can be used as a primary source of gathering accurate information.” I am congenitally deafblind. Since people gain 95% of their information from their distance senses, I have had many unique experiences and challenges. Being deafblind is not the same as being deaf or being blind. It affects my ability to learn about and interact with my environment and communicate with the people around me.
My Intervener “Intervention is the process which allows an individual who is deafblind to receive non-distorted information such that she can interact with her environment.” I have a special 1:1 paraprofessional called an intervener with me at all times while I am at school. Her name is Ms. Lockhart. An intervener is a person who consistently works 1:1 with someone who is deafblind and has specific training in deafblindness. She acts as my eyes and ears; helping me access information and communicate with others. If you have questions about deafblindness, she can help you!
My Vision & Hearing I do not have any vision due to total retinal detachment at birth. I have profound hearing loss in my left ear and severe loss in my right ear. I received a cochlear implant (CI) in my left ear in 2005. I can hear lots of different sounds when I have my CI on, but I do not hear them in the same way you do.
Meaghan Bresser, Deafblind Intervenor –Updated August 2012
Without any vision, it is difficult for me to make sense of these strange noises. My family considers my CI to be a tool to help me gain information about my environment. Here are things to keep in mind about my CI: • Loud or sudden noises scare me sometimes. • My CI should be set to P2 in a quiet environment or P1 in a noisy room. • I know which ear my CI goes on and if you help me with the ear piece, I can put the magnet on myself. • I will keep my CI manual and extra batteries in my backpack. • I should not wear my CI on the playground. • Please encourage me to wear my CI, however, if for some reason I am adamant about not wearing my CI, please respect my choice. My HI teacher (Ms. Stanford) and my intervener can help you determine why I am behaving this way (i.e. I am not feeling well or the CI is not working correctly). • If I do not want to wear my CI, I will try to hand it to someone nearby. If I cannot find someone to give it to, I will just put it down wherever I am. I know that I am not allowed to throw my CI. I understand that if I throw it, I will need to stop what I am doing and pick it up.
My Communication I use many different modes of communication, including: • Sign language – Receptively, I will hold on to your hands while you sign or you can help me make the signs with my own hands. Expressively, I will sign to you if you are touching my hands. • Voice – Expressively, I make all sorts of sounds that you will be able to recognise as being happy, sad, excited, or frustrated. • Concrete symbols – I use objects to represent activities, places or people. I use these both expressively and receptively. • Gestures / Touch cues – See the attached list of touch cues that I understand. • Braille – I am working on understanding that braille has meaning and that I can create it using my brailler. • Facial expressions – I express my feelings through my facial expressions. Meaghan Bresser, Deafblind Intervenor –Updated August 2012
My parents’ goal for me is to become proficient in sign language. They would like for me to learn to use my residual hearing to the best of my ability to gather information about my environment. I express eleven signs consistently (eat, drink, more, stand up, ball, sock, swing, bed, hug, pudding, blanket) and several others occasionally, or with minimal prompting (book, sausage, clean up, finish). Please encourage me to use these signs correctly (see attached list) and expand my vocabulary whenever possible. I am familiar with and working on understanding over 100 signs receptively. When you are communicating with me, please keep these things in mind: • Be confident when you are communicating with me. I can tell if you are nervous or unsure. • Let me know that you are there and want to talk to me by tapping me on the arm or hand. • Please wait for me to reach for your hand so we can communicate. • I will identify you by feeling your forearm. I will confirm this by feeling your cue (an article of clothing or jewellery worn consistently) and/or your sign name. • Please offer me both hands, palms up, so I can sign to you. I will not sign unless you are touching my hands; if you aren’t touching me, I don’t know that you are paying attention. • When you are signing to me, please speak clearly at the same time. • After communicating with me pause so I have time to think about what you are asking or telling me. • Please pause and allow me to ask for what I want before you give it to me, even if you already know what I want. • I am left handed. If you are teaching me a new sign, please remember that my left hand is dominant. • Please avoid writing words on my hand (finger spelling or writing letters with your finger). Using the sign or the real object will make much more sense to me. • Some things will need to be repeated many times before I understand them.
Meaghan Bresser, Deafblind Intervenor –Updated August 2012
My Mobility I am able to walk independently and I have a very good memory for where things are in space. I have many routes in my classroom and around the school memorized. I have leg braces that help me walk properly so I don’t hurt my knees or ankles. I will wear them when I am at school. I also have a cane that I use to help me travel safely. I will use my cane when I am travelling around the school (not in the classroom). I hold my cane in my left hand and if there is a wall I will trail it with my right hand. Sometimes I forget to keep my cane in front of me, so you may have to remind me. Sometimes it might be best to use sighted guide instead of my cane, like if I am getting very tired or if it is very crowded in the hallway. I prefer that you walk on my left side. I will hold on to your right wrist or elbow and follow you. When someone is walking with me, they can use touch cues to tell me about my route without me having to stop and put my cane down. For example, you can tell me that there is a step up by tapping my leg twice (see attached list). If I feel unsafe in an environment, I will sit down and scoot on my bottom. If you reassure me that you are still there and help me find a landmark (i.e. the wall), I will stand back up. I have many people helping me with my mobility and consistency is very important. If you have any questions you can ask my intervener, my physical therapist, or my vision/orientation and mobility teacher (Mr. Sheppard).
Skills of Daily Living • I am left hand dominant. • I can eat independently with some mess. I may need to be reminded to use my utensils if I am really enjoying my food. • I prefer foods that are either warm or very cold and easy to chew. I will try most foods that are presented to me.
Meaghan Bresser, Deafblind Intervenor –Updated August 2012
• When I am finished eating I will carry my bowl to the sink, throw my garbage out, and wipe my face. • I like to pour my own drinks with assistance. • I can drink out of a cup with a straw, a coffee cup or a thermos with minimal spilling. • I can independently take off my shoes, socks and braces. I am working on putting them on myself as well. • I can dress and undress myself with minimal assistance. • With encouragement, I can brush my teeth. • I am working on potty training. I will sit on the toilet with no problem. If I have an accident, please encourage me to change my clothes in an appropriate place and to participate in any clean up that has to be done. • I can climb the stairs at school by myself (with my cane and the handrail). I can go downstairs by myself as well, as long as someone is right there in case I lose my balance. • I can navigate most playground equipment with minimal support. • I can get into and out of my car seat by myself. • I can unlock and open most types of doors independently.
Tips for Working with Me • My intervener will be with me at all times. She will be able to give you suggestions about how to adapt activities to meet my needs as well as answer questions about me and deafblindness in general. • I will need to get to know you before I feel comfortable working with you. I will find it helpful if you wear the same piece of unique jewelry or clothing every time I see you so I can identify you. • Be confident when you are interacting with me. I can tell if you are nervous or unsure.
Meaghan Bresser, Deafblind Intervenor –Updated August 2012
• It is extremely important that you help me to do things for myself instead of doing things for me. Incidental learning is very, very difficult for me since I cannot watch or listen to what other people are doing. For example, if all of the chairs at the table have someone sitting in them, show me that all the chairs are full and then take me with you to collect another chair. That way I am aware of the problem and how to fix it, instead of just having a chair magically appear. • Tactually modeling what you want me to do is a good way to help me understand your instructions (i.e. If you want me to kneel, let me feel you kneeling). • Use real objects whenever possible. Miniatures and other plastic toys are very visual and share few if any other qualities (tactile, olfactory, taste) with their real counterparts. • I learn routines quickly if they are done consistently, however some things will need to be repeated many times before I understand the concept. • Please confirm when I do something right. Clapping your hands in front of my chest, patting me on the back, or signing ‘good work’ are all ways to tell me I did a good job. • Since I have limited access to sensory information I sometime engage in stimming behaviors. As long as my stimming is not affecting my ability to focus on the task at hand, allow me to do it. If my need for added input is making it hard for me to focus and listen to instructions, you can help me calm down by giving me deep pressure (i.e. squeezing my shoulders or patting me on the back and chest). • Like any other kid, I learn best when I am having fun. Many of my favorite things to do are active, like swimming, swinging, rocking, climbing, sliding, etc. My favorite things to play with are socks, things that vibrate, and things that make loud, high pitched sounds, especially if I can turn them on and off myself. If you can incorporate and expand on some of these interests in your lessons, I will be more motivated to learn. • Your level of motivation will affect mine. If you believe in me, I will learn and achieve.
Meaghan Bresser, Deafblind Intervenor –Updated August 2012
Learn More about Deafblindness & Intervention • Deafblind International www.deafblindinternational.org • Georgia Sensory Assistance Project http://education.gsu.edu/georgiadeafblindproj/ • Intervenor for Deafblind Persons Program http://www.georgebrown.ca/Marketing/FTCal/comsrv/C108.aspx • Intervener.org http://www.intervener.org
References: Monaco, Carolyn. Communication II Lecture. George Brown College, Toronto, 2010. Adapted from “All About Me”, Faye Rashidzadeh, Intervenor, Summer 2010
Meaghan Bresser, Deafblind Intervenor –Updated August 2012
