During Max\u2019s childhood, one of the challenges we frequently faced was that when Max was upset or having a hard time and we asked him what was going on, he wouldn\u2019t answer. Sometimes we would figure it out by playing detectives following the evidence so that we could find out if there was anything that needed to be looked at or changed specially related to school. Later on, we learned of Max\u2019s language processing disability which affected his ability to verbally express what he was thinking, feeling, needing, etc.<\/p>\n
There were many times when I wanted to know what Max’s experience of having Down Syndrome was like, and each time I gave up the idea thinking that if I were to ask him it was going to be too overwhelming for him. Having entertained thoughts of talking to Max and what I would ask him, one day without having prepared anything or given it much thought, I simply said to him, \u201chey… I’m curious to ask you something…\u201d And without Max noticing, I took my cell phone and started a recording casually asking him questions that had been floating around in my mind for a long time. Here is the interview verbatim:<\/p>\n
Mate:<\/strong> How is life for you, what is your experience having Down Syndrome?<\/p>\n Max:<\/strong> I am so grateful to have it easy. Easy to express what I am feeling, to express what I want, my needs\u2026<\/p><\/blockquote>\n Mate:<\/strong> That you are able to express with words? How have you determined that you have it easy? Compared to, or giving what?<\/p>\n Max:<\/strong> Compared to Kyle (a student that Max knew in High School who was nonverbal).<\/p><\/blockquote>\n Mate:<\/strong> Compared to Special Needs people that you know that cannot talk?<\/p>\n Max:<\/strong> Yes.<\/p><\/blockquote>\n Mate:<\/strong> What else, in terms of your experience as a person with Down Syndrome? It can be both challenges and things that are easier\u2026 an overall experience for you.<\/p>\n Max:<\/strong> I see that the only challenge that I see, the only one, is my thought processing. My thought processing skills, you know? That that takes place at a slower rate. For me, that\u2019s the only challenge.<\/p><\/blockquote>\n Mate:<\/strong> How does it challenge you? Does it challenge you in your mind? In your emotions? Both? Or in any other area? Would you explain a little more?<\/p>\n Max:<\/strong> In my mind. Sometimes I would like to express more freely. All the rest is easy.<\/p><\/blockquote>\n Mate:<\/strong> What is the rest? If you were to be more specific?<\/p>\n Max:<\/strong> The rest? That I am able to complete my tasks. Getting dressed, taking a shower, brushing my teeth. Those tasks.<\/p><\/blockquote>\n Mate:<\/strong> Anything else about your experience as a person with Down Syndrome? What about emotionally?<\/p>\n Max:<\/strong>\u00a0 Emotionally, easy.<\/p><\/blockquote>\n Mate:<\/strong> How come?<\/p>\n Max:<\/strong> For me, that I am able to express my emotions more freely without anything getting in the way that stops me from expressing my freedom. To express that freedom without any distractions or interruptions. From that aspect it\u2019s definitely easier.<\/p><\/blockquote>\n Mate:<\/strong> Is that something that you do inside of yourself, that you have inside of yourself? Or, does it have to do with your environment as well?<\/p>\n Max:<\/strong> Both.<\/p><\/blockquote>\n Mate:<\/strong> So, what is it that you do inside that makes it easy to express your emotions? Or to have the freedom to express your emotions?<\/p>\n And, this is an interview by the way\u2026 If you haven\u2019t noticed, I just realized that this is an interview\u2026<\/p>\n (laughter)<\/p>\n Mate:<\/strong> Do you do anything inside of you to make it easy to express your emotions?<\/p>\n Max:<\/strong> Yes.<\/p><\/blockquote>\n Mate:<\/strong> Do you know what it is that you do inside?<\/p>\n Max:<\/strong> Yes. I make more space.<\/p><\/blockquote>\n Mate:<\/strong> Can I ask you how do you make more space?<\/p>\n Max:<\/strong> I align myself to come into the quietness.<\/p><\/blockquote>\n Mate:<\/strong> Ok, so you open the space inside of you\u2026 And, in terms of outside of you, what is it that makes it easy, that gives you the freedom to express your emotions? You said that it was both, right? Something that you do inside and something that happens outside too.<\/p>\n Max:<\/strong> For me, making new friends easier.<\/p><\/blockquote>\n Mate:<\/strong> So, it has to do with people around you?<\/p>\n Max:<\/strong> Yes, whether it be family, friends or strangers.<\/p><\/blockquote>\n Mate:<\/strong> What do these people have offered or given you that you have that space to be emotionally free to express yourself?<\/p>\n Max:<\/strong> for me to allow to share, care\u2026 They give me that space to share\u2026 care\u2026<\/p><\/blockquote>\n Mate:<\/strong> What do you consider that your strengths are? Physically, emotionally, mentally as a person?<\/p>\n Max:<\/strong> Physically, being fit. Continuing swimming, working out.<\/p><\/blockquote>\n Mate:<\/strong> Is there a person in your life that has helped you or supported you in being physically fit?<\/p>\n Max:<\/strong> Track and field coach in Middle School.<\/p><\/blockquote>\n Mate:<\/strong> Yes, the coach at school. And outside of school?<\/p>\n Max:<\/strong> Papa.<\/p><\/blockquote>\n Mate:<\/strong> What about your strengths emotionally or mentally?<\/p>\n Max:<\/strong> Emotionally, that I ask for help, you know? When things get hard for me, I ask for help.<\/p><\/blockquote>\n Mate:<\/strong> Great! And mentally?<\/p>\n Max:<\/strong> To keep a strong and youthful mind.<\/p><\/blockquote>\n Mate:<\/strong> How do you do that? How do you keep a strong and youthful mind? I am trying to get you to acknowledge yourself for what you do for what you are. Because people around you, we have contributed but a lot of what you are right now has a lot to do with what you have done yourself.<\/p>\n Max:<\/strong> Yes. For me to keep a youthful and strong mind is to acknowledge it.<\/p><\/blockquote>\n Mate:<\/strong> One strength that I see in you is that you like learning stuff.<\/p>\n Max:<\/strong> There you go. That\u2019s the one I was looking for.<\/p><\/blockquote>\n Mate:<\/strong> You like learning about things that interest you. Your reading is one of your strengths. You taught yourself how to read.<\/p>\n Max:<\/strong> Exactly. For me mentally, I say it\u2019s always learning about new stuff. And for me, that\u2019s what it means to have a youthful and strong mind.<\/p><\/blockquote>\n Mate:<\/strong> What about your music? How does your music play into who you are? Because, for you, music contributes or is part of your strengths.<\/p>\n Max:<\/strong> Yes, it has been. Yeah, music has played a big part. Yeah.<\/p><\/blockquote>\n Mate:<\/strong> Do you remember how you found music? When you realized that about music?<\/p>\n Max:<\/strong> Well, it all started with the music teacher in 3rd<\/sup> grade. From her I went to my passion for the drums and my aides.<\/p><\/blockquote>\n Mate:<\/strong> People that like music, like your aides\u2026 and music for you is a subject that is easy to talk about, and now sports.<\/p>\n Max:<\/strong> Yes, music and sports. Yes, that\u2019s for me mentally.<\/p><\/blockquote>\n Mate:<\/strong> Music is also emotionally. It touches your heart, connects you with your heart.<\/p>\n Max:<\/strong> True. For me there are certain artists, bands, singers that have really contributed.<\/p><\/blockquote>\n Mate:<\/strong> What do you think are your weaknesses, overall.<\/p>\n Max:<\/strong> I don\u2019t have any. That\u2019s interesting\u2026<\/p><\/blockquote>\n Mate:<\/strong> What do you think are your talents? Talents of yours, gifts that you have yourself or can use or share with the world? You can also look at that as qualities, what qualities do you have?<\/p>\n Max:<\/strong> For me, I gotta go with the drums definitely. Talents-wise for me, the drums in regards to music.<\/p><\/blockquote>\n Mate:<\/strong> What about people? Your talents regarding people?<\/p>\n Max:<\/strong> My talents regarding people are having a strong commitment to my relationships.<\/p><\/blockquote>\n Mate:<\/strong> And qualities inside of you in relationship to people?<\/p>\n Max:<\/strong> Inside of myself?<\/p><\/blockquote>\n Mate:<\/strong> Yes, inner qualities.<\/p>\n Max:<\/strong> For me, I say love, and that says it all.<\/p><\/blockquote>\n Mate:<\/strong> Perfect! What is what you most appreciate about your dad in relationship to you, as your father?<\/p>\n Max:<\/strong> He keeps me active.<\/p><\/blockquote>\n Mate:<\/strong> What about your mom? What are the things that you most appreciate about your mom in relationship to you as your mom?<\/p>\n Max:<\/strong> Always her understanding, and that says it all.<\/p><\/blockquote>\n Mate:<\/strong> Alright, love it. What are you grateful for about your dad being your dad, and your mom being your mom?<\/p>\n Max:<\/strong> Papa, always keeping me active. For mama, always there when I needed it the most.<\/p><\/blockquote>\n Mate:<\/strong> What are you grateful for about life?<\/p>\n Max:<\/strong> That is too hard of a question for me.<\/p><\/blockquote>\n Mate:<\/strong> If you were to give advice or clues to someone who has Special Needs, you who have Special Needs what would you say to a peer of yours who also has Special Needs? In terms of advice or keys, what would you share with them? From your experience, from what you\u2019ve learned and grown into now that you are almost 24. What would you tell someone maybe who is younger, who has Special Needs, who also has challenges. Is there anything that you would say to them?<\/p>\n Max:<\/strong> Be strong on all levels, and that says it all.<\/p><\/blockquote>\n Mate:<\/strong> If they ask, how to be strong, what would you say to them about being strong?<\/p>\n Max:<\/strong> Balance is key. Balance between family, friends, relationships, work.<\/p><\/blockquote>\n Mate:<\/strong> Do you know what Down Syndrome means? Do you know what it is about? I know that you know you have it\u2026 What do you know about it? What is your understanding about what Down Syndrome is?<\/p>\n Max:<\/strong> For me it\u2019s a mental disability.<\/p><\/blockquote>\n Mate:<\/strong> Do you know that the condition is a genetic disorder?<\/p>\n Max:<\/strong> Yes.<\/p><\/blockquote>\n Mate:<\/strong> Do you know about the chromosomes? Do you know that it has to do with the chromosomes?<\/p>\n Max:<\/strong> Yes.<\/p><\/blockquote>\n Mate:<\/strong> I said disorder because the order of the chromosomes is that everyone has 23 pairs of chromosomes, but people with Down Syndrome have an extra chromosome. The origin of Down Syndrome is physical, genetic. And, that disorder affects every cell in your body because cells are made out of chromosomes. Because of having one chromosome extra in each cell, if we were to exaggerate a little bit using it as an example, it would be like having one more arm or an extra finger or an extra leg. So, you function differently because of having an extra something. But if you have that extra something on a microscopic cellular level, it has repercussions or consequences in your physical, emotional and mental abilities. So, it is not a mental condition\u2026 it is a physical-genetic condition that affects your mental abilities.<\/p>\n Max:<\/strong> There you go.<\/p><\/blockquote>\n Mate:<\/strong> Do you know how it affects you physically? You know that you are very flexible. In your joints, you have a lot of flexibility. That is one of the consequences of having Down Syndrome. Do you know about low muscle tone?<\/p>\n Max:<\/strong> Yes.<\/p><\/blockquote>\n Mate:<\/strong> Do you know that you use to have it when you were a child. You needed to do extra work to develop tone in your muscles. Now you don\u2019t because you have worked at it.<\/p>\n Max:<\/strong> I would like to change my understanding\u2026 For me, Down Syndrome is a physical disability that affects my mind.<\/p><\/blockquote>\n Mate:<\/strong> Your disability is on the mental level; it\u2019s called intellectual disability. Physically is more of a condition that affects you mentally, but it\u2019s not affecting you physically as much anymore, very little.<\/p>\n Max:<\/strong> True.<\/p><\/blockquote>\n Mate:<\/strong> When you define it you can say that it is about having an extra chromosome in every cell in your body. So, Down Syndrome is a physical condition that affects your mental abilities.<\/p>\n Max:<\/strong> For me, as a person that has Down Syndrome myself, I see it as an intellectual disability of someone who is mentally retarded.<\/p><\/blockquote>\n Mate:<\/strong> What does mentally retarded mean to you?<\/p>\n Max:<\/strong> Like slower on their thought processing skills. Yes.<\/p><\/blockquote>\n Mate:<\/strong> What is that you see in Down Syndrome people, physical features that you say are not that strong in you?<\/p>\n Max:<\/strong> The fingers, a broader skull. Eyes are more slanted.<\/p><\/blockquote>\n Mate:<\/strong> What\u2019s the feature that you consider the most evident or predominant in Down Syndrome people on their face?<\/p>\n Max:<\/strong> The slanted eyes. That and the broadness of the skull.<\/p><\/blockquote>\n Mate:<\/strong> If you were to be asked, what for you is the most challenging aspect of having Down Syndrome?<\/p>\n Max:<\/strong> My thought processing.<\/p><\/blockquote>\n