2: Most Important Place To Begin - Getting To Know The Individual Introduction I want to introduce you to a process. Although it’s a standard process that can be used with many people, the outcomes are individualized based on that person’s unique God-given strengths and struggles. To help make this as practical as possible, there is a form in Appendix A you can use in working through the next several pages of this book. Please turn to Appendix A and follow the instructions on where to find a printable version of these pages. If you use that form along with the written suggestions, you will be well on your way to discovering some strategies to try. Place To Begin: Puzzle Pieces On page 86 you will see a green and pink puzzle piece. If you have a specific person that brought you to this book, fill in the puzzle piece for that person. What gifts, interests, and talents can you list on the green side for this person? What about difficult areas and weaknesses? List those on the pink side. Try to come up with 3-5 greens and 2-3 pinks. When you have written them down, thank God for the areas of gifting you see in this individual. Asking The Right Question: What Can The Individual Do? As we continue to get to know this individual, it’s important to ask the right questions. So often we focus on what that person CAN’T do. She can’t sing, he can’t speak, she can’t write, he can’t walk. While these things may be true, they rarely lead us to any strategies to try. It seems important to ask the right question – What CAN the person do? She can wave a praise streamer, he can point to a picture to communicate, she can use a computer that converts her speech to written words, and he can steer his wheelchair (in fact, he pops wheelies in the hallway!). When you focus on what a person is able to do and what that individual enjoys, it’s much easier to think of the tools, approach, and opportunities to include in that environment where we can make this most important introduction. How Does The Individual Take Information In? If we think about a typical classroom or church service, those in charge often assume that most people take in information through spoken words. Instructions and information are often given typically orally. So often “word learners” are drawn to positions such as pastors or teachers. Presenters assume that others take information in the same way. That group of ear learners, however, is dwindling. How often do people comment that they learned and remembered so much from the children’s message because they were shown an object or picture? It’s important to know how people best process information so that we can align our strategies with that person’s best way of taking information in. Some people do function well with words. Others prefer pictures or objects. Adding a photo or branch of an oak tree can make a sermon illustration come alive. Other individuals may understand best with a sign language interpreter or materials available in Braille or large print. Some people take information in through reading. The level of a person’s reading ability may be important to know as you continue this process. Two other factors greatly impact the area of information processing. First, how well does this person remember? What tools help this person retain information? As we think of presenting information to an individual, we also want to increase the chance of a person remembering the information. Adding rhythm and movement can often greatly improve the chance of a person remembering a Bible verse. Keeping a visual on the wall of main concepts can assist long-term memory. Boiling down information to one main point and repeating that point verbally, visually, and with movements can also help retention. In general, the greater number of sensory systems you involve, the higher likelihood a person will remember. God set a perfect example for us. In the Bible He set up a way to “remember me” in Communion. He involved five sensory systems in the process, increasing the likelihood we will all remember. Partaking of the Lord’s Supper is something we can see, touch, taste, and smell. When combined with God’s instructions in Scripture, we can also hear it. God set the gold standard for us to follow in remembering! The second factor that can greatly impact information processing is the ability to pay attention. You can have the most amazing set of materials combined with a dramatic flair you could take to Hollywood, but if the person has an attention span of two minutes, that’s the time you have to input information before capturing another two-minute time block sometime in the future. The good news is that there are some good supports to use to help lengthen and strengthen a person’s attention. For example, instead of only offering chairs to sit in, some people can pay attention for a longer time by sitting on something with air in it such as an exercise ball or inflatable seat cushion. Some companies are even making desk tops that are attached to exercise bikes and treadmills. Some people enjoy holding something to fidget with while trying to listen and focus. Allowing people choices to move can also be helpful. Standing and listening can be far more effective for some people than sitting and listening. Another strategy to help someone focus is to break the day or the task into smaller parts. Having a schedule with words or pictures that people can move or check off when finished can be a great way to hold someone’s attention. This works especially well when the last item on the schedule is something the individual really enjoys. From seat cushions to visual schedules, attention span is a critical part of taking information in. Using the form from Appendix A, jot some notes about the individual that brought you to this book. How does this person take information in? You can also make note of questions you might want to ask so that you can get this kind of information. How Does The Individual Get Information Out? We communicate in a wide variety of ways. Without any words at all, a newborn has excellent communication skills. You can tell if the child is peaceful, upset, tired, content, or fussy just by the way the baby holds his body or cries. He can command an entire set of adults with just a few communication tools. If you think about your day today, you can probably make a long list of ways you communicated to others. It might have been with body language, a gesture, spoken words, pointing to something, or writing a note. As we get to know an individual even more closely, it’s important to understand some of the communication tools this person can use. Can the individual speak words and how much meaning do those spoken words have? For example, some people repeat phrases, but the actual words may have little meaning to the individual. Some people will take your arm or hand and pull you to a desired object. Another person might get information out by writing. Again, it’s important to know how much a person can write and what kind of meaning those words have. Some individuals have learned to copy words while others use that as a prime way to tell you what they need or want. In addition, some people need specific types of pencils or grips in order to write legibly. Make sure you have some available in your environment. Some individuals use sign language or gestures to communicate. Others may draw pictures or symbols. If an individual is without spoken words, many speech therapists will recommend using pictures to communicate. You could take a picture of the three snacks you are offering that day, and the individual points to the picture of the snack that looks the best. Some people string pictures and symbols together to form sentences. A person might display the phrase “I want crackers please” through a series of 3-4 pictures. If a person uses pictures to communicate, it’s important to have the tools available in your environment. Would you leave your voice at home? Then don’t forget to pack the pictures either. Technology has ushered in a whole new era of communication tools. If you own a smart phone, there’s a good chance there is a setting that allows it to speak to you as well as turn your voice into written text. Through many phone services, you can get your voicemails turned into written words. These kinds of tools are so helpful for persons who communicate without spoken words. There are so many different kinds of communication devices that give a spoken voice to the needs and wants of the person pushing the buttons or programming the device. Make sure you understand how to listen to the individual you are with. Find out how that person communicates and what ways you can enter into that conversation together. Make sure they have access to the equipment needed to have a conversation together. Take out the form from Appendix A. Jot down some notes in this section. You may also have a couple of questions you would like answered as you continue to get to know this individual. How does this person get information out? What Movements Can The Person Do? When I first met Marie at church, I wanted to say good morning and shake her hand. Marie uses a wheelchair and was pushed by a caregiver to the front row of the sanctuary. When I reached out to say good morning, I noted her wrists were in soft Velcro ties. As I started to speak, I noticed she was frantically moving her eyes up and down. Only a soft groan came out of her mouth. I smiled and walked away realizing that I needed to get the answer to this question: What movements can Marie do? After speaking with her caregivers, I found out that she has voluntary control of her eyes only. When she looks at you, the answer is “yes.” When she looks away, the answer is “no.” She also has a board with a set of words and phrases on it. She keeps this in a bag on the back of her wheelchair. If you point to the columns, she will look at you to get your finger to stop moving. When you point to the rows, she will look at you again. The intersection of the row and column is the word or phrase she wants to say. In order to interact with Marie in a meaningful way, I needed to understand her movements and what she could do. This could be helpful when interacting with your friend as well. Can he walk and run? Can she operate her own wheelchair? Can he sit in a chair on his own? Can she hold a spoon while eating? While your friend may have many movements that work well, for those individuals who have limited mobility, find out what tools, equipment, and safety issues impact the individual’s ability to interact with the environment. One word of caution. Make sure you separate physical differences and intellectual differences. So many people assume that my friend Marie has a lower IQ. This is not true. While her body has limited mobility, her ability to think, solve problems, and understand the world is very typical. She enjoys a great joke, a handsome man, and reads words easily. On your form from Appendix A, what comments can you write about the individual in your life? What movements can this person do? Does The Individual Have Any Sensory Sensitivities? I was visiting a friend. She has been diagnosed with Lyme Disease. This has greatly impacted her neurological system. We used to meet for a cup of coffee and a chat at Panera Bread; now it’s much easier to meet at her home. She gets dizzy now and has become sensitive to the light. She wears sunglasses to protect her eyes and walks very slowly so she doesn’t fall. Her home is usually quite dark inside, and those who visit use quieter voices because sounds can be overwhelming. The part of her brain that processes sensations like sounds, sights, tastes, balance, pain, touch, and smells has changed so much in the last couple of years. A trip to Panera Bread for a cup of coffee was one of many things she used to do in a day. Now it would be her only outing, require a driver to get there, and probably have her resting for the remainder of the day due to exhaustion. The coffee shop is filled with sensations that would be difficult for her brain to filter. My friend acquired these sensory sensitivities to sounds, sights, and movements due to Lyme Disease. They are hopeful these differences will fade with treatment. For other individuals, sensory differences last a lifetime. Many times, when there is a neurological difference, there is also a sensory difference. People are not making it up. The sounds you hear that seem typical could be painfully loud to another person. The volume understanding is in our brain – and it varies from individual to individual. While I would encourage you to get more information on this topic, I will offer a brief explanation of sensory differences so you can better interact with your friend. Imagine sitting by a piano keyboard. Middle C is right in the center of that keyboard, and it’s a great place to be for your senses. If your sensory system is wired at middle C, you can take in the sensations that are important, and you can block out the others. If you are sitting down and reading this book, you most likely are not focused on the way your rear end feels in the chair (at least not until I mentioned it). Your sensory system has blocked that out as unimportant information. If, however, you sit for too long and your body needs some blood moving around, your sensory system will send some input that has you shifting and moving so your body parts get the needed blood supply. Some individuals have sensory systems that are set far above middle C in one or more areas. It may take a small amount of the sensation, and it registers in a big way. A small noise might have that person covering her ears because it sounds loud to her. Someone brushing past her in the church hallway might have her grabbing her arm and wondering who hit her. The perfume of the individual three rows away might have her gagging and leaving the sanctuary. Please remember, this is not a made-up situation. Her brain interprets those signals and the feeling is very real. As you can imagine, just as with my friend with Lyme Disease, settings with a lot of stimulation can pose large threats. If you are sensitive to noise, for example, a loud children’s setting, a rambunctious youth group, and a worship team wired for big sound can all be challenging. While there are tools to help filter some of the sounds, please understand that persons venturing out into these environments deserve an award at the end of the day for bravery! While there are people wired above middle C, you can also have individuals wired way below middle C. In this situation, a person would take a lot of input to even register the sensation. I had a student who slammed her fingers in a car door, looked at me calmly and said “ow.” She had no tears or concern because her pain receptors are set up differently. She truly feels less pain, although the bruising on her fingers showed the extent of the injury. This difference can happen in any sensory system. A person could seem nearly oblivious to someone calling his or her name. You need great volume to register the sound. Another person might come up and squeeze you very tightly. He loves hard and heavy touch because he needs it that way for his brain to even know someone is there. In fact, if hard and heavy touch feels good to him, he could assume it also feels good to you. Most individuals believe other people’s sensory systems are wired similarly. This is the cause of much misunderstanding and a really important lesson to teach! This under-sensitivity to sensations can happen in any sensory system. While the cause for sensory differences varies, and the length of time one has this difference can vary, it’s important to be aware of any unique wiring in the individual in your life. Remember, some individuals can have several differences. She might be under-sensitive in one area and over-sensitive in another. Using the form from Appendix A, consider some of the following information. While this is an overgeneralization and I am avoiding technical terms, Table 1 shows what you might see. Please note on the form from Appendix A what sensory differences you may see in the individual that brought you to this book. Perhaps you can find out what tools have been helpful for this individual to regulate that particular sensation. Tools like sound blockers, weighted vests, a brushing technique, tinted glasses, a mechanical pencil, a mini trampoline, and much more can make the difference between attending or not attending an event. On your form from Appendix A, list the sensory differences for your individual.   Below Middle C Under-sensitive Sensory System Above Middle C Over-sensitive Speaks loudly, needs a lot of sound to register, often doesn’t hear spoken directions Sound Covers ears, avoids situations where there are unpredictable noises such as buzzers in a sporting event Hard to register non-verbal cues such as body language, needs a lot of visual input before seeing something Sight Avoids eye contact, prefers environments where there are fewer decorations and visuals Likes food spicy, bubbly, and hot; would be a great candidate for eating foods high on the Scofield Index Taste Has a limited number of foods that are safe, often eats blander foods with a smooth texture Seems oblivious to smells like rotten foods, dirty diapers, or body odor Smell Reacts strongly to smells such as perfume, hair gel, coffee breath, and detergents; might leave a room gagging Craves touch, gives hard and strong hugs, likes to play rough and hard Touch Cuts tags from clothing, aligns sock on foot exactly, interprets light touch as pain, avoids getting touched unexpectedly Likes to spin, hang upside down, and can ride roller coasters over and over with great joy Balance Avoids moving quickly, hugs the walls for support, looks down in crowded places Moves around a lot on a chair to gather position, challenging to feel a pencil in hand Muscle Feedback Holds objects lightly, tries to limit some movements Table 1 What Equipment, Safety Measures, Or Supports Might Be Important For This Person? If you are the child’s parent, you are the child’s expert. If you are the adult’s caregiver, you may also be an expert. It is really important in this category, however, to resource the other people who will be spending time with the child or adult. If you are not the individual’s “expert,” what information might you need to know? Do whatever you can to get this information. We have children at our school who have seizures. We type up a safety protocol and have emergency supplies for each one. All the people who are part of the child’s life know what to do if a seizure happens. We have children who have allergies to bee stings or certain foods. Each of these children has a safety protocol typed up and has emergency supplies available as needed. Each adult needs to know the process to follow and have access to the needed supplies. If you are interacting with an individual who has any medical issues that require emergency intervention, make sure you have a written plan in place. For my friend Marie, the individual who speaks with her eyes, we needed to understand a lot about daily care in order to better include her. In order to take communion, you need to get a piece of bread very mushy with the juice and place it on the back of her tongue. Positioning her wheelchair is important to the aches and pains she feels every day. We needed to understand this. This category is long for Marie, and several people at church needed to be fully trained in how to come alongside her. For the youth group member with AD/HD, you might need some equipment that is helpful for focusing. Having an exercise ball to sit on and a fidget pencil for writing could make a big difference in participation. For a struggling writer, having the right pencil, paper, and slant board could open doors for participation. While it’s not possible to cover all of the technology, equipment, or safety measures you may need to discover, remember that you are finding out about one person. What does Chaniqua need? What does Barry need? Become an expert on that one person and find out how to best equip your environment for safety and success. On your form from Appendix A, list what you know and what you need to know. Who Needs To Know This Information? Every good plan has two parts. The first part of the plan involves the individual, while the second part of the plan involves “the others” who are part of the environment. Peers, volunteers, family members, pastors, work colleagues, and people at the community center might need to know pieces and parts of this plan. As we are creating this environment for access to the Gospel and inclusive worship, there will undoubtedly be others who are part of this arrangement. For example, let’s imagine that we are going to give Yolanda a streamer to wave during praise and worship time. This is a way she can say “I love you” to God without using words. If Yolanda begins to wave the streamer without informing the rest of the congregation, some might view her as a distraction. It’s important to think about equipping the rest of the congregation to better receive her gift of praise and worship. In one church I visited, the pastor simply said, “I’ve asked Yolanda to wave a purple streamer as we sing today. I am beginning a sermon series on Jesus as our king, and I want us to think about that as we worship.” Is Yolanda a distraction now or is she part of the worship plan and team? By asking the question “Who needs to know this information?” you can often eliminate the concerns and highlight the blessing she brings to a setting. While I will be covering this in more detail later, use the form from Appendix A to consider who might need to know some of this plan and information. A Place To Begin As you look at the form from Appendix A, you now have this individual firmly in your mind. As we walk through the next sections of this book, remember that any ideas and plans you generate should come from your knowledge of this individual. We want to wrap our environment around this hand-crafted individual who has been made by God to fill an important spot in His kingdom. Instead of shoving this person into a “one size fits all” curriculum or class, let’s design supports around this person so we can best reach and include this friend, child, sibling, or aging parent. To find Appendix A online, go to www.withministries.org/accessible-gospel-inclusive-worship
Last modified: Tuesday, January 2, 2024, 9:09 AM