There are a few common themes that have emerged in our approach with my brother that have allowed us to better connect and communicate with him. The pillars of this approach are described below. I have intentionally kept it at a more general level so it can be adapted to various situations that are relevant to you.
This is an approach that is very much evolving and a “work in progress” as we iterate on the best solution for my brother. Through future experiences as well as our discussions in the Decode Lab, I hope to continue to evolve this approach.
I have organized the approach into an acronym CARES— which I felt was a nice way to remember the pillars. But more importantly, the acronym CARES really captures the essence of the approach: showing my brother we care about him and are trying to understand his world.
Summary of the five pillars of the approach [with more details if you click on the pillar name]:
“Can do” focus: This is the foundation of the approach and helps create an encouraging and supportive environment for my brother. It focuses on celebrating what my brother can do as well recognizing what are key success drivers. This helps us create environments for him to succeed.
Acknowledge: Given my brother cannot express himself easily, one of his key frustrations is that he is not understood. Acknowledging his emotions and challenges helps build some calm as he feels less misunderstood. Coupled with empathy and a positive focus that “he can do it”, acknowledgement helps build a further supportive environment.
Respect: Especially as my brother has grown older, giving him respect has been key. Everyone likes to be respected and my brother is no different. Two critical dimensions of respect have been the tone we use as well as how we give him choices and independence when possible. Understanding what he “can do” and acknowledging my brother as an individual complement the respect we provide.
Explain: There is a lot of things we accept or do because we understand why it is — whether it is accepting the time change for daylight savings or why we need to wash our hands. While we implicitly understand the reasons behind these things, it may not be as obvious to my brother. Hence, we explain the appropriate reasoning to my brother. Given my brother’s challenges to process the environment, particularly changes, it is important that he understands why his environment is the way it is and explaining is a key element of that. Explaining also assures him that nothing is wrong and he has not made a “mistake.”
Support with tools: To build on how my brother learns, it is important to adapt supporting tools accordingly. Three key elements of this: making the content relevant and practical to make him focus, breaking down the information in a way that he learns and processes information, and changing it up to make sure he is motivated and interested.
More on each of these pillars if you click on the links or scroll down below. Also, see sample tools here to help put these pillars into action.
“Can do” focus There are some things my brother can always do like playing computer games and playing the piano.What is more interesting are the things that my brother can do sometimes — like dealing with changes. Sometimes he is extremely anxious when there is something new and some times he manages to be very relaxed. But, if he “can do” it once, he can probably do it again.
Hence, the “can do” focus has two elements:
- Understanding what allows my brother to do certain things and what differs across situations
- Celebrating what my brother “can do” and motivating him with examples of when he has done them
Hence, on a daily basis we celebrate what he “can do” to show he can handle situations that he might feel challenging for him. For example, my brother was very flexible in accepting a new couch that we bought for him as the new couch was more comfortable for him. When we were going to get a new SUV to replace our minivan, my brother was very anxious. Hence, we read the following to my brother (written in first person) for him to both understand he can manage change and motivate him to deal with it:
“I can be very flexible. I am sitting on a new couch. I like the new couch. New things can be good. We will be getting a new SUV. The SUV will help us better travel in the snow. I can like the new SUV”
Reading this statement to my brother and making him repeat it helps him understand that changes and new things can be good, shows him an example of how a new change has been good for him and he has accepted it, and gets him prepared for the new change. By the time my brother sat in the SUV for the first time, he had a big smile on his face.
We have applied this to multiple scenarios including trying new foods, dealing with when water spills on him, etc. (Read more in the sample tools section on Positive Statements and Daily Talking Journal)
Acknowledge
Imagine you are upset about something at work … you come home to share it with your family and they don’t understand how upset you are and almost dismiss it as not being a big deal. It can be frustrating. In my case, when people tell me it is not a big deal, it makes me feel even more upset.
And it is particularly frustrating for my brother, as he gets upset by the smallest things — he did something in a different order than usual, a bottle in the shelf moved from its place, etc.
It is easy for us to dismiss it as- “It’s not a big deal.” However, that made him even more upset as he felt he was doing something wrong by worrying and did not know how to deal with it.
Hence, the first step that we found helped my brother was simply acknowledging his feelings. For example, by saying: “I know you are upset. It is okay to be upset. I know it is difficult for you.”
When we acknowledged my brother’s feelings, there was a certain calm that would come to my brother’s eyes as he stopped protesting with his emotions and felt understood. Once he began to calm down, he could better deal with the situation without getting upset or angry.
In addition, showing empathy and relating with his challenges help. Particularly, by sharing examples of how we face similar challenges helps us better connect with my brother. He gains confidence that he can deal with the situation just like we did.
For example, if he was upset he did not have the time to do something at school, I tell him an example of when I did not get to do something and did it the next day. If he is upset that he didn’t get what he wanted, I would share a story of when I did not get what I wanted.
This acknowledgement and empathy has been key to building that calm as well as connect with my brother.
Respect
Building on acknowledgment and empathy, respect has been a critical part of a successful approach with my brother.
If you step back and think of respect, it has various facets — including the tone of how people talk to you and how they give you choice and a say. All facets have been important with my brother.
As we discovered, my brother is very perceptive to tone- from humor to sarcasm to ordering him. As he has grown older, like any young adult, he does not like taking orders. He has been very successful when we ask him to do things in a respectful manner, e.g., encouraging him on how “he can do it” and how “he is 21 years old and a big guy now.” One of our discoveries that highlighted the importance of respect was when my brother listened to a teacher who addressed him in a a respectful, positive manner and easily agreed to give his blood for lab work.
At home, my brother often does not like doing things in the kitchen as he is worried he will get dirty or wet. He likes to eat zucchini and we wanted to see if he would help us peel the zucchini. We explained how he is “21 years old” and he can help out at home and asked him to help us. Asking him in a respectful, “you can do it” manner, convinced him to peel zucchinis for us.
In addition, we try to give him choices whenever it is possible so he understands his wish is respected. There is a particular cold medicine he does not like. We tell him it is “his choice- that it is good for him but he can make the final decision”— this has helped him be more accepting of the medication and also feel like his say was respected.
And when he does not have a choice, we explain to him how there are times we do not have choice, e.g., at work sometimes I do not have a choice on what I do when. This helps him understand why it has not be done, instead of taking it as an order.
Hence, in addition, to respect, explaining has been another critical pillar of our approach.
Explain
We have found explaining to be a very powerful tool in multiple contexts, especially if we tailor the explanation in terms of what is relevant to him. You and I often accept things we do not like because we understand why they happen or why we must do something , e.g., eating foods we do not like because it is good for us. However, these reasons may not be explicitly obvious to my brother. Hence, explaining the reasons behind things helps my brother accept more challenging situations.
The following are a few examples:
- Explaining why he has to do something: For example, my brother does not like cutting nails, likely due to sensory issues. He is also worried he will cut them incorrectly. We showed him a story on why it is important to cut nails. We showed how, without cutting his nails, his nails will get dirty and break and make it difficult for him to eat his favorite foods. Linking the explanation to something that is important to him, like eating his favorite foods helped.
- Explaining why something happens: For example, my brother does not like when Dad has to go to work when he has vacation. One of the directors at an organization we spent time with in India (Mirra) provided an amazing explanation. He started with my brother’s favorite foods, e.g., taco, pasta, and explained how you need money to buy taco and pasta. He then proceeded to explain how you need to go to office to get money. With that explanation, my brother himself agreed that my Dad needed to go to office. A few months later, one afternoon, my brother again came back from school and was asking for Dad. I reminded my brother, “Dad needs to go to office for money. Do you want money for taco?.” My brother himself answered, “Money. Dad go to office.” Such is the power of explaining and making the explanation relevant to my brother.
- Explaining a change in the environment: For my brother, it is very difficult to manage changes, e.g., when it gets darker sooner in the winter. We explained to him how the globe moves, how we are farther from the sun, and why there are daylight savings. We also explained how the summer will come and the sun will stay longer and how he was able to wait every year for the longer days. Arranging this as a story, helped my brother better deal with the change.
Support with tools
Supporting the elements of the approach, are tools to reinforce various concepts and ideas. There are three guiding principles to tools we have found effective with my brother:
- Relevant and practical: My brother is motivated by what interests him, e.g., music. Hence, we try to motivate him in learning environments by making it relevant and practical so he understands why it is important to him. Two examples of this:
- Learning “yes or no”: My brother is one of the most inconsistent people when it comes to answering “yes or no” questions; it will seem as if he is answering randomly. However, when you ask something very important to him, e.g., “Do you like taco (as tacos are his favorite food)?” , he will immediately answer “Yes.” And sometimes if he was not paying attention and answered “No”, we would tell him something like, “Oh, you do not like tacos? Then we do not have to eat them anymore.” Then my brother would immediately fix his answer and realize the importance of accurately responding to “yes or no” questions as it was practical and relevant to him. He finally understood why it was important he was accurate with “yes or no” questions as his favorite things depended on it.
- Math matters: I have shared an example of how my brother completely understood the concept of greater and less than when it came to how much candy he wanted among the discoveries. Hence, we realized when it was something important to him, he paid more attention to math concepts. Hence, for other math concepts such as ratios, word problems, addition, etc. by using examples based on food or items he liked, we found he paid more attention. For example, before buying his favorite Mexican food, I would create a list of all the items and their prices and ask him to calculate how much money I would need so I can go buy it. He was so eager for me to buy it, that he would do the total with rapt focus and attention and give me the correct answer. If it matters to my brother, he will pay attention. You can see examples of practical math worksheets in the tools section.
- Break it down: As I mentioned earlier, processing is a challenge for my brother — there are a lot of distractions and complex language is difficult to process. Hence, we have found ways to adapt the content for my brother which makes him focus and understand it better. Here are three sample techniques we have used:
- Show language in action: It is often difficult for my brother to retrieve the right word for a particular situation. Hence, once approach we learned at an organization in India called Mirra was showing language in action. Instead of just telling him through pictures or definitions, words would be taught in action. For example, “get up from the chair”, would be taught by telling my brother to tell me to “get up from the chair.” Hence, he could connect the words to what they mean by seeing my action — from “getting up” was to what the “chair” was.
- Fill in the blanks: When my brother is reading a block of text, it is often difficult for him to focus and keep his place. To help him practice focusing and to process the information, I would create one version of text which had blanks in place of the key words. Hence, he would have to read through the block of text carefully and word by word to fill in the relevant blanks. This would also bring his attention to the most relevant words. In the end after he finished filling the blanks, we would ask him multiple choice questions based on those key words. Again, the multiple choice would help him focus on the most relevant words. See a sample here.
- Step by step math: My brother is very strong at math. However, he would lose track of the steps as there are many implicit steps to simpler math problems. For example, take the ratio of 5 pants is $50, how much is 3 pants? We would first have to figure out 1 pant is $10, and then 3 pants is $30. Hence, I found myself having to prompt him for each step. Instead, I found if I just set up the math worksheet with blanks for each step he was able to complete it accurately without any prompts. The blanks served as reminders of what he needed to do next. See sample worksheet here.
- Avoid confusing nomenclature: This is perhaps more relevant for algebra. If we used an algebra worksheet as is, a problem would read: a+ 5 = 8. My brother would not understand why the letter “a” was in the math problem. By adapting the problem to read, __ + 5 = 8, my brother would complete it immediately. Hence, the key was to cut out all the complexity of the concept. See a sample worksheet with a variety of concepts here.
- Change it up: As described in the discovery of Variety is the spice of life, my brother gets easily bored and would often lose interest. This would lead him to do things incorrectly over time as he would be bored and not pay attention. In addition, he would begin to create patterns with words and want everything in a certain order if we began repeating the same lesson often. Hence, for all these tools we vary them up with different examples, words, ordering every day. (See a sample math worksheet here)
For example, we read a set of positive statements to him everyday to explain how he can deal with changes, etc. We change the statements slightly everyday. This serves multiple purposes:
- He does not get bored of reading the same thing again and again.
- He is exposed to more vocabulary.
- He does not repeat the same words in a rote fashion.
See samples of positive statements as well as other tools here.
This approach is just an emerging one, as we continue to adapt and evolve it according to situations we face. This approach has in no way been a cure or a sure-shot solution. What it has been is a new way to interact with my brother and help him gradually overcome the anxiety and frustration he has built up over the years.
We look forward to hearing your thoughts on this approach as we continue to adapt and evolve it. Please join the journey at the Decode Lab.
