To the Doctor Who Doesn’t Call My Son With Down Syndrome by His Name

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You there, in the lab coat. Yes, you. Put down the pen.

We need to talk.

You haven’t really looked up since we walked in. Last I checked, we were here for you to examine my son, Rukai, and you’ve only been asking leading questions and making notes, rating him against some invisible scale and ticking boxes. It’s incredible! That pen hasn’t stopped. Your questions haven’t stopped. And your paper has received far more attention than my son has, which tells me that frankly, you are wasting our time.

I have to tell you that it’s beyond difficult for me to extend the courtesy of calling you “Doctor.” It’s difficult because my son’s name is Rukai, and in the five minutes since we sat down, you have yet to say it. It’s difficult because my name is Maxine, and you keep calling me “Mom.” And there’s that pen, scribbling. Scribbling. Ticking boxes. Ticking me off.

You have called Rukai “they.” You have compared him to thousands of other people with a similar condition, but at last check, good sir, these other people are not Rukai and Rukai is not them. And I am not your mom.

You expect we will hang on every word and follow your directions to the letter. That we will gladly come back for you to monitor something that’s not presenting itself as a problem in reality. But on paper, it may. And therefore you have clear guidelines as to what you should statistically be monitoring.

But the scale tips to me when it comes to identifying what we should be monitoring. Just because Rukai has a disability does not mean we’re unable to look after him. If there were no third copy of the 21st chromosome floating around in his blood, you wouldn’t even consider his current condition worth monitoring. He is developmentally delayed and that is all. Other than that, we just don’t see any issues. But you just keep looking for them.

Rukai is a unique individual, just like you, and as his mom, I know him best. If you had spent these first five minutes looking at us and asking me whether I’d noticed any changes, or how his behavior had been recently — rather than immediately begin comparing him to thousands of other people — you would have his truth before you. I don’t care how many patients you have seen over the years. You have not met Rukai until today, and today is when you first learn about Rukai.

Statistics are guesswork. Life is too short to live tunnel-visioned in the grey.

I find it both comedy and tragedy that society is perennially patting itself on the back for celebrating difference: in religious belief, gender identity, political persuasion, hair color, body shape, and so forth. Yet here, when you’re talking about the very thing that makes us unique — genetic material, human DNA — you group, box up and throw away. You say “they” and tick those boxes.

And now that you’ve not paid him any attention, you go and run some play-based testing. And guess what? Just like any other kid on earth, if you aren’t engaged with him, he won’t be interested in you. And he won’t play. Do not dare assume this means he cannot.

And you write in terms of how he “is.” Based upon 60 minutes of a life that has already gone on days, weeks, years. Sixty minutes with your pen inking commentary which would fade and wash away if you left it out in the rain.

Place Rukai out in the rain and he will tilt his head back and laugh and flinch and maybe go and stomp a puddle. He will not fade. He will not wash away.

I’d ask you to remember what brought you to medicine in the first place. You wanted to care for people. To serve. To listen and to respect. To advise and to heal. But with years of practice, I’m sure there’s monotony, repetition, boredom. Paperwork. I suspect it’s become far too easy to categorize people just to get that revolving door of endless patients to cease spinning. It might seem so much easier to find a common thread and close the chapter than to uncover a new story.

But I challenge you to remember why it matters to society that we celebrate difference. Remember why Rukai matters. Because we all have a unique contribution to this life — 46 chromosomes, 47, whatever count, he counts. He has a name and a story, and he has unique potential. He has likes and dislikes. He is not “they.”

Follow this journey on Down In Front, Please.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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When I Saw My Son With Down Syndrome on Times Square’s Big Screen

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As the mother of a child with Down syndrome, I sometimes feel like advocacy/raising awareness is just as much a full-time job as motherhood and my full-time job. But sometimes you have those really great snapshots in time when you feel you’ve made strides in advocacy and awareness, and those moments provide the fuel you need to get through the times it seems allies are scarce.

Each year, the National Down Syndrome Society (NDSS) runs a photo contest where pictures of people with Down syndrome are chosen to be part of a video that plays on the big screen in Times Square. The video, paired with the NY Buddy Walk, serves as a sort of kickoff for October’s Down Syndrome Awareness Month.

We submitted a picture this year, choosing one that followed the year’s theme: inclusion. It’s hard to imagine what one picture captures inclusion, but for us, it was a rather ordinary picture — a candid photo taken just after a soccer game. My son, Evan, played on a team of typical kids, and after the game, he stood with his snack next to his teammate and cousin, Andrew. For us, that ordinary picture just resonated, and we submitted the photo.

Evan and his cousin, Andrew, in their soccer uniforms

When we received the message that our picture was selected for the video, we were so excited and touched!  Our son would be part of something big that would be an awareness tool. For us, the message is huge. It’s the thread that holds the fabric of society together: inclusion. We booked our hotel. We were going to New York.

For us, being selected for the video was an incredible honor and thrill, and it became even more meaningful when a local reporter contacted me to talk about Down syndrome, the picture we submitted and the video. Just a day later, my son and nephew were in an online story, and the next day, they were on the front page of the Lansdale Reporter and were in another paper, too.

On September 19, we stood with hundreds of people with or touched by Down syndrome and stared up at the enormous screen. While we watched, New Yorkers, probably many of whom are not so closely touched by Down syndrome, saw our children, saw the facts about Down syndrome playing on the screen and maybe learned a thing or two about the great capabilities of people with Down syndrome.

Throughout the audio-less video, the crowd provided its own soundtrack with cheers at the moment someone saw themselves, their loved ones or the new friends they made standing near them on the screen. At 42 minutes and 49 seconds, we saw Evan’s photo on the big screen in Times Square. It was a truly proud mama moment that brought tears to my eyes as I cheered, snapped pictures and tried to point out the picture to Evan. He missed it, but we have the newspapers, the pictures and the video to show him.

The photo of Evan and Andrew on the big screen in Times Square

After the video was over we went to Central Park to participate in the NYC Buddy Walk, where we continued our awareness-raising activities. We’ll be participating in our own local Buddy Walk (the Buddy Walk for CHOP) on October 4. We’ll be celebrating abilities, awareness, and acceptance for people with Down syndrome. 

This time was filled with so much celebration of acceptance and awareness. Sometimes it seems like you really have to search for these things. Other times it’s plentiful, and when it is, it can breathe so much more energy into you for the times when it’s not. I wish for all of you similarly wonderful experiences in acceptance and awareness.

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To the People Who Think My Daughter With Down Syndrome Is ‘Always Happy’

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One assumption made about people with Down syndrome is that they’re always happy. I’ve observed my daughter, Lydia, to see how accurate that statement is. Honestly, I don’t like hearing this assumption because I remember all the times she disobeys, yells and screams, and throws a tantrum. To me, she has every emotion, and there’s really no difference with her than my other children in that regard. However, there is another difference.

I find that no matter what Lydia’s going through, she has a genuine interest in people and a genuine kindness in her heart. It’s something I believe is unfamiliar to this world. When she sees people hurting, sad and looking at her, she wants them to be happy. She doesn’t see them staring at her because she’s different; she just wants to see them smile.

When we’re at the clinic and she’s giving blood, even though it hurts her, she’s often more concerned about the person drawing blood. She will start to smile until she sees the tech smile. It is almost as if she doesn’t feel she’s succeeded until she sees that person smile. Often times I find myself thinking her mission is to bring a smile to other people’s faces no matter what.

When she’s eating and she chokes on something, I ask if she is OK. She immediately looks up in the middle of coughing to give me a thumbs up. She doesn’t want me to worry. When she can, you will see her beautiful smile make the room light up. She’s not necessarily OK, but she smiles. Sometimes my heart is full and other times it aches knowing that despite her pain, other people’s happiness brings her great joy.

She goes to school and gives it her all for the couple of hours she’s there. She’s determined and smiling, and she’s helping others. She’s quick to run to someone to give them a hug and a kiss and make it better or just cheer someone on with a high-five. That’s just who she is. However, when we get home, I see her struggle. She coughs and is tired. She sits on my lap sucking her bottom lip, twirling my hair in her tiny hands, fighting to keep her eyes open. I look at her and tell her I love her, and she manages a half-smile from the corner of her mouth.

She throws a tantrum because I can’t understand what she needs. She gets frustrated and angry. It’s not her fault, nor is it mine, but sometimes there’s no good way to change the situation. She throws her body on the ground and hits the floor, screaming. She yells and looks at me like, “What is wrong with you, Mom, why can’t you understand?” I do my best, but there is frustration. As she comes out of the tantrum she easily forgets, gives me a hug and tries to make me smile. It’s forgotten and left behind with not an utterance of it again. Her smile is still there through the frustration, and she always makes sure I have a hug and am OK.

I watch her in the hospital when she is feeling crummy, is in pain and just wants to be left alone. But as soon as the nurse or doctor walks in, she has a smile and is ready to give a high-five or a hug. She loves people and it doesn’t matter how she feels; she will reach out to anyone and make them smile.

She interacts with the hospital staff and lights up when they smile back. She waits for them to give her a little bit of attention, and then she turns on her charm.

Yes, she does smile a lot. But her smile is for your good and not because she’s “always happy.” She looks for ways to make others smile — that is one of her gifts. She has the full range of emotions. She feels just like you and me. But she’s built with an inner smile to make the hardest of faces smile back at her. Her smile says she cares about you, her smile says to have a great day, her smile tells you you’re loved. It doesn’t mean she’s always happy — I believe it only means she thinks of others before herself.

Follow this journey on Loving Lydibug.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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16 Ways to Make the Most of Counseling — From Counselors Themselves

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If going to counseling is something you’re thinking about or a pursuit you’ve just begun, it can be a daunting process if you don’t know what to expect. So we teamed up with the experts — members of the American Counseling Association — to get you the inside scoop on what to expect from counseling, and some advice for people who’ve just begun.

Be proud of yourself for taking that first step. Now here’s some advice for making the most of it: 

1.Open up at your own pace. If you don’t feel like ‘telling it all’ in the first few sessions, that’s OK. Your counselor really wants to get to know you, not just the issue that brought you to counseling.” — Kim Slater, M.S. Ed., L.C.P.C.s

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2. “It’s completely normal to feel somewhat on edge about what you’re doing, especially when you’re not quite sure what to expect. To ease this feeling of uncertainty, prior to meeting with your counselor, write down all of the questions you have about the counseling process, the specific counselor you are meeting with and about payment, outside session communications, cancellation policies, etc. And if at any time you get the sense you’re not clicking with your counselor, that’s OK! Trust the counseling process and don’t give up.” — Tara Finau, LPC

3.Manage expectations. What do you, as a client, seek to achieve? Communicate that to the counselor and then discuss how that goal might be achieved long-term.” — John P. Duggan, M.A., NCC, LPC, LCPC

4. “Be honest! There are so many people you can lie to for free, why would you pay to lie to a therapist? If you feel that your therapist is judging you, or is uncomfortable with the topic, you need to find another therapist.” — Elaine Wilco, LPC

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5. “Begin to develop a rapport with your counselor. Start by getting to know them and asking questions. A good relationship with your counselor will help maximize your experience and overall success. — Danielle A. Irving, M.A.

6. “As you begin counseling, prepare for the possibility of feeling some emotional discomfort as you learn to approach problems in ways that might be unfamiliar for you. Just as you might experience physical discomfort when beginning a new exercise program, you might feel a little uneasy as you begin working through sensitive issues using new mental techniques and strategies. Don’t be afraid to speak up if you have thoughts, ideas, suggestions or concerns!” — Erin T. Shifflett, MLA, M.Ed.

7. “Therapy is a journey of self-discovery and self-understanding. Allow yourself to be in ‘the here and now,’ and be open to really experiencing and exploring your thoughts and feelings. Be clear and honest in the counseling session. Allow yourself to be truly vulnerable and open to this journey of self-discovery — that’s how you’ll get the best results.” — Alexia Pilleris, M.S.

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8. “Remember, you are in a safe and comforting environment. This is your time and your time only so make the most of it. Your counselor is on your side.” — Tanairy Fernandez, MS.Ed, LMHC, NCC

9. “Try your best to be honest about present and past events and thoughts. At times, clients approach initial sessions gingerly. They often minimize quantity, frequency or extent of feelings, behaviors or events. Being open and honest creates a healthy environment and helps establish trust.” — Dr. John D. Massella; LPC, NCC, CCS, CCDP

10. “Counseling is a collaborative process, but you are the expert on yourself. If you would like something to be different about your sessions (for example, different amount of focus on one issue compared to another), please ask.” — Lauren C. Ostrowski, MA, LPC, NCC, DCC

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11. “Counseling is most helpful when we can share as openly, honestly and directly as much of our thoughts, feelings and behaviors as possible. Only then can we identify areas of challenge and success.” — Melissa Luke, Associate Professor, Coordinator of School Counseling, Syracuse University.

12. “Counseling is a process. I don’t have a magic wand or a magic pill, but I will walk with you on the journey of discovering who you are and where you want life to go. You have already taken the first step. Above all, please remember you are human and that is enough. You are enough.” — Lisa Taylor-Austin, NCC, LPC, LMHC, CFMHE, LLC

13. “Remember it’s unlikely your problems developed overnight, so don’t expect them to go away in that amount of time, either. Be realistic about the timeframe it takes to root out the causes of psychological distress. Give counseling at least 90 days (once-a-week appointments). By then you should know if what you’re doing is helping.” —  Ryan Thomas Neace, MA, LPC, NCC, CCMHC

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14. “Your counselor may assign ‘homework’ for you to do between sessions. Homework could include things like journaling, mood tracking, breathing exercises or other tasks. While this might be new for you, it can be a really important part of your treatment. But if you don’t do your homework or if you have trouble with it, be up front with your counselor. He or she can make adjustments.” — Gina Della Penna

15. “It’s important to understand you will get more results from counseling if you actively participate in the process. Remember, counseling is your journey to hope, healing and feeling better about yourself and life. Enjoy your journey!” — Dr. LaWanda N. Evans, Licensed Professional Counselor

16. “This is unlike any other relationship you probably have. In friendships it’s socially appropriate to give and take — you talk, then I talk, you share, then I share, and so on. Counseling is different because the focus will be on you. Sometimes you may struggle with what to talk about. This is OK. No one wants to experience pain, but through pain, there is growth. If you are truly doing the work, expect to leave some sessions feeling drained, overwhelmed and emotionally exhausted. This means you are on your way to healing. It’s something to be celebrated.” — Tracy S. Hutchinson, Ph.D., LMHC

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*Some answers have been edited and shortened for clarity and brevity.

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To the Person Who Reminded Me Others Have It Worse After My Hospital Stay

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The conversation with you happened over two years ago, and yet I still remember it vividly.

I was only a month out of the hospital when you cornered me in the hallway at work. You knew my mom had moved to live with me because I was extremely sick, but I don’t think you fully understood how close to dying I had come. You asked me how I was doing.

I answered honestly, but vaguely. I told you I was doing slightly better, but I was still very medically unstable. I had to take each day at a time, and sometimes even each moment.

I don’t believe I’d even finished my sentence before you responded, “Oh. Well, you should think of those worse off than you. You know, like those that have cancer. Or a chronic disease.”

You rendered me speechless as I tried to gather my thoughts into coherent words.

It was then I told you I do have a chronic disease. And actually, it was my chronic disease that was making me so ill. That didn’t stop you though. You still responded with, “Oh. Well, think of those worse off than you. Like those living with cancer.”

I wish I had the courage to tell you how much those words stung. At the time, you had no idea how many scary and painful medical tests I was having done. How many specialists I was seeing. How that particular hospital visit gave me PTSD that I still struggle with to this day. I didn’t disclose any of that to you.

You also didn’t know I watched my close friend die from cancer not even two years prior. How I sat late at night with her, both of us crying, because we didn’t know what our futures looked like. How we both had our lives planned out and knew what we were supposed to accomplish before it seemed like our dreams were stolen from us. How we both had scary medical labels associated with our pain and suffering. I lived. She didn’t. But I also almost didn’t live. Your careless words brought back a tidal wave of memories with her.

Amber and her friend Kara

I’m not sure what you hoped to accomplish by stating that phrase, not once, but twice to me.

I wish you had the wisdom to merely acknowledge the fact that I was going through a difficult time and you didn’t know how to respond. You could have encouraged me and reminded me I didn’t need to compare my journey to anyone else’s in order to validate it.

If you’re struggling with something and someone feels the need to remind you other people have it worse, remember this: It doesn’t invalidate your emotions or fears. Your journey is your journey. Someone might have it worse, but someone also might have it better. Don’t ever doubt the difficulty of your journey. Guilt over your emotions will help no one.

Follow this journey on Clearly Alive.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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To the People Who Don’t Know How to Respond to My Chronic Pain

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To the people who don’t know what to think or say about my life with dystonia and chronic pain, it’s OK. I have no expectations. For a while, I was angry when I didn’t feel like my pain and other symptoms were fully acknowledged. After 15 years, I’m OK with it. I’ve learned that I have to be. It’s too exhausting trying to explain and please others. My comfort and happiness must come first — as must yours. We can all take better care of each other if we take better care of ourselves.

That being said, I secretly wish you could live in my body for just one day. I don’t want you to suffer, but a day in my shoes would help you better relate and make me feel more understood. Here’s what I believe you’ll learn about life with dystonia and every other chronic illness.

I’m still a worthwhile human being. I still want to enjoy work, family, friends and leisure activities, but I feel stuck inside a body over which I have little to no control, keeping much of that out of reach. Doctor’s appointments, treatments, medications, the rest needed to function, anger, worry, frustration and fear are all part of my every day life.

Making plans is often uncomfortable because I may not be feeling up to following through. Sometimes driving is difficult. I’ve also become sensitive to certain stimuli, such as bright lights, noises, crowds and certain smells, so I carefully pick and choose my activities.

I may not know how well I will feel each day, let alone hour to hour some days. There are days when I can do more than other days, but just because I did something one day doesn’t mean I can do it again the next.

It’s frustrating dealing with people’s expectation that I get better faster, get over it already and act as though I’m cured when my physical symptoms are unseen or after I get a treatment, most of which just mask my symptoms at best.

When I say I’m fine, it doesn’t mean I’m not experiencing pain or discomfort. Sometimes words aren’t adequate to describe how I am feeling. I attempt to hide my symptoms to avoid being a bother and to try and forget. I desperately want to feel “normal.” The kind of pain I experience has forced me to adopt coping mechanisms that don’t necessarily reflect my real level of discomfort. When I say I’m in pain, it’s usually worse than usual; much of the time I’m just coping and trying to sound happy and look normal.

“Getting out and doing things” doesn’t make the pain vanish and can often exacerbate my symptoms. If I were capable of “getting on with things,” I would. I’m constantly striving to improve and do the right things to manage my symptoms so I can “get out and do things” more. Sometimes I hear others say, “You just need to push yourself more; try harder.” It may be hard to read how I feel on my face or in my body language, but I push myself all the time — sometimes too much and I pay for it later with worse symptoms. Finding balance is one of my greatest challenges. Some days I do nothing but push just to get through the day.

Each day has to be taken as it comes. I have to mentally prepare and carefully consider if an activity is going to cause more symptoms. This can lead to a great deal of fear and anxiety because I never really know how much my body is going to cooperate. Going on day long trips or walking through the mall may be out of the question for me. I tend to need frequent rest breaks so “making a day of things” means something different to me than it once did.

Sometimes I sense that I’m unwanted and unwelcome. This is logical since it probably feels like a slap in the face getting rejected almost every time people ask me to do something. Even if I say “no” most of the time, I still hope you will ask. It’s important to know I haven’t been forgotten and am still valued. Just because “no” is a common response, there are times when I will say “yes.”

It’s hard for me to sit on the sidelines, and I feel deprived when people stop asking me to join in activities. When I am physically and mentally able, I will always say “yes,” so please give me that opportunity.

If listening to the details of my condition makes you uncomfortable for a short while, consider this: what is your short-term discomfort of lending an ear compared to the long-term, chronic discomfort of a friend or loved one?

Talking about dystonia is one of my most important coping tools. Denying me of my best survival mechanism makes a hard day even harder, but bringing it up on my own has become tiring. However, I rarely exhaust of answering questions. I love it when someone takes the time to ask about my condition. Efforts to understand makes me feel valued.

Since you can’t really live in my body for a day to see what it feels like, I hope you will now better understand why I live my life the way I do — self-preservation so I can enjoy every moment to the fullest!

Edited excerpt from Diagnosis Dystonia: Navigating the Journey (2015), by Tom Seaman

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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