5 Tips for Interacting With My Child With Special Needs

499
499

One night, I didn’t feel like going out for dinner. It was raining and I wanted to stay in. But the rain stopped and my hubby, Ralph, convinced me to go out. So we went to a local salad bar restaurant. After going through the salad buffet, we found a spot and settled in.

My son, Samuel, was persistent in asking for his cereal. The sound he makes reminds me of a duck.

Ralph jokingly said, “You’re a broken record, kid.”

A lady sitting at another table laughed.

Evelyn Mann the mighty.2-001

We were almost done with our meal when the lady came over and said she was a pediatric nurse. Ralph coaxed Samuel into giving her a wiggle and smile. Yep, the smile does it every time.

She asked about our little guy, and we joyfully answered her questions. What parent doesn’t love to talk about their kid? It was so nice to fill her curiosity and share the joy of our son.

We left the restaurant feeling like we made a new friend. We would have missed the moment had we not gone out.

Next we went to Sam’s Club. This time we erroneously left Samuel’s cereal in the car. It just started to rain when we got in so we decided to do a quick shopping trip.

As we were going down the last aisle, I saw a woman in a wheelchair with a trach. Excited to introduce myself, I explained Samuel had a trach, too. She smiled back and asked us a few questions about our son. She was so warm and friendly, and I felt comfortable asking a question I’ve always wanted to know.

“What does it feel like to be suctioned?”

She explained it didn’t feel good and that it was like the feeling you get when you gag. Instead, she uses her cough reflex to avoid suctioning and hasn’t done it in five years.

Fascinating. We suction Samuel several times a week. I pondered how to teach him to learn purposeful coughing as an alternative.

She happily shared her experiences with us as we continued to talk. Soon, Samuel was almost inconsolable, demanding his cereal. We said goodbye to our new friend. I headed to the check-out while Ralph returned to the car where the golden cereal awaited.

Waiting in line, I smiled. What I would have missed if we hadn’t gone out.

If you are wondering how to interact with people who have special needs, our night out gives a few hints (plus a few extra):

1. Don’t be afraid to introduce yourself.

Like the nurse did. Or like I did when meeting the lady at Sam’s Club.

2. Don’t be afraid to ask questions.

Even if it’s a simple question like asking a child’s age. You never know what you will learn. I share about the type of dwarfism Samuel has to create awareness. And if you have kids, that awareness is absolutely educational and worth sharing with them.

3. I know it’s hard, but try not to stare.

Smile instead. It just may lead to a conversation.

4. Don’t touch the child or the stroller.

Even shaking hands is something I prefer not to do. I have to be constantly vigilant to keep Samuel healthy. Before having Samuel, I wasn’t so concerned. I also got a cold almost every year. Now, I rarely get a cold. And, thank God, neither does Samuel.

5. Do fuss over the kids.

I’ve had many people come up to me and comment on how cute Samuel is. I use that opportunity to share something about our little miracle and hopefully get him to smile, warming another heart.

So the next time you’re out, try one of these suggestions. You never know, you just might make a new friend.

Evelyn Mann the mighty.3-001

Follow this journey on Miracle Mann.

499
499

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

A Letter to My Son’s Special Education Teacher

568
568

Dear Special Education Teacher:

I want you to know I’m scared. While I know you have probably seen it all when it comes to your students, I am so used to people who think they have seen it all until they meet my son, Boo.

For the first time since preschool, I have not been going through the back-to-school grind. I’m not worried about school supplies or packing lunches; these things are completely provided. We bought him some new clothes that were dress-code-compliant online and they were on sale.

Not only do students arrive at your door with special needs, but I suspect most of the parents arrive at your door guarded as well. The road to get here was not easy – not easy to acquire these services and not easy to accept that my child needed them.

When the first day of school arrives, the principal introduces himself to my family by his first name. Considering the slightly passive-aggressive stance I have taken with school personnel who insist on using last names as if we aren’t equals, this stopped me dead in my tracks. My kid is not his teachers’ equal, so he will call them what he is told. But yes, I have been known to respond to emails from Ms. Last Name with a Hi First Name and insisting they call me Shannon. I have never called my boss, my CEO or anyone other than medical doctors and my own teachers as anything but by their first names.

Putting up such formal walls doesn’t make me feel like an equal partner in education. And here was this welcoming man greeting my child and telling him to call him by his first name. When I found out that all the teachers here also went by their first names, I thought it was not only charming, it was warm. It was warm for kids who have met so much iciness for their inability to control their behavior in a general education classroom.

We were allowed to take him to his classroom. This meant the world to us. I feel it should be illegal to force kindergarteners and first-graders to march down a hall by themselves and not let parents in the classroom, just on the first day. Those first few moments in a classroom at the start of the year shouldn’t be about establishing authority over young children; they should be about building trust.

I saw the warmth in your eyes, the quiet way you spoke. I don’t know if you are always so calm and peaceful. Eleven children with special needs and behavioral problems are about to enter your room and you look happy to see them.

I see you have gone all out. Not only is my child’s name on his desk, it is on the wall in a perfectly cut, laminated construction paper star. The work for each child is on the wall in carefully divided folders. For most of the students, many other things are taped to their desk, most notably their IEP goals so they can start to achieve them. There’s a corner of the room I can see my Boo will feel safe pacing when he needs to. How long did you spend tending to this room to make it more than just a great space to learn, but a space to heal as well?

I see you, and I have no idea why you are here. You could have chosen so many easier paths in life, even if you were called to make a difference. You could be teaching so-called “normal” kids right now instead of willingly taking a job in which you don’t even get to escape to a teachers’ lounge for lunch and recess because these are critical times for the social learning most of these kids need far more than reading, ’riting and ‘rithmatic – although you are expected to teach those, too, to common core standards.

When Boo arrives home that afternoon, he is so happy and proud of himself. I see he has a daily report on which you have rated his behavior every 45 minutes. You have included detailed notes, and there is a space for me to let you know if his night was positive or negative and if his morning before school was positive or negative. That evening, I receive the kindest email from you telling me how much you enjoyed him today and asking me to review the details of the behavior modification trick we have been using at home that I mentioned in passing that morning.

Thank you. Thank you for everything you did leading up to the first day of school and during this first week. Boo is already excited to see you on Monday.

A version of this post originally appeared on Red Queen Mommy. It was inspired by a post on Alamo City Moms Blog.

Lead photo source: Thinkstock Images

568
568
TOPICS
JOIN THE CONVERSATION

To the Care Provider Who Doesn’t See Beyond My Diagnosis

264
264

Dear Care Provider,

I am not a number on a chart, a line copied from your medical textbook nor a statistic that always fits into carefully written criteria. I am a human being with emotions, dreams, goals and a life outside of your small exam room. I am so much more than that diagnosis code you entered into your medical files. When you see me for those brief moments once a month, you seem to make such vast assumptions about my existence. You assert your opinion on my emotional ability to deal with my illness firmly, as if your perspective is the only possible truth. You ask me how I believe I am coping with my situation, to which I state my conviction, but you do not hear me. You have already written your opinion in my record and have already made your judgment even though my belief is contrasting to your own.

“Depressed. Anxious. Moody. Emotionally distressed.”

These words now ring out loudly in my chart, ones I do not believe are true. A definition of myself that you decided after only having met with me for a fleeting moment. How could these words possibly not be true you assume, I mean, look at this life she is forced to lead: oxygen tanks, feeding tubes, central lines, chemotherapy, mobility aids, constant pain, crushed dreams and a terminal prognosis at the age of 24. This is all you see, the professional patient that I have become since autoimmune disease overthrew my life. You see a name on a chart, a laundry list of medications, an upcoming appointment list with over 16 procedures and a health summary with more diagnoses than you can count on both hands. You must feel it’s safe to assume those words you describe me as since you feel there is no other feasible alternative to an emotional status.

Chanel White the mighty.2-001

The truth is, you know nothing of my life beyond your waiting room chairs. Your stance on my emotional standing is established by looking through a small keyhole into my situation. This keyhole supplies you a restricted view, so please do not base your convictions about me on that. Yes, I am a woman with emotions, and yes, I have probably cried in your office, which, given the circumstances, I deem to be very appropriate. That does not, however, give you the right to summarize my moment of emotional frailty and frustration in your office as the interpretation of my being. While yes, I have moments of depression, anxiety, deep enveloping sadness and emotional distress, I would not classify myself by these descriptions. I find so much joy in this broken life. I write a blog, I spend time with friends, I go on adventures with my husband, I snuggle with my kitty and I love every minute of this shattered reality. I experience great happiness, enjoyment and satisfaction through this ailment that has befallen me.

You would not know this because you never ask. Never have you inquired about my happiness, never once asking about the things that bring me pleasure and fulfillment. You focus only on the negative, never even imagining I could be happy with my imperfect life. To be honest, your judgment of me was made before I even entered those clinic doors. You made your verdict while reading my chart notes from the last doctor who, chances are, didn’t ask me either.

Sincerely,

Broken, but Happy

Follow this journey on A Day in the Life of a Tube Fed Wife.

264
264
JOIN THE CONVERSATION

What a Hike Revealed About Our Journey With Our Son’s Krabbe Disease

251
251

Krabbe disease is a progressive genetic and potentially terminal disease that affects the white matter in the brains of children and adults. It robbed our daughter, Mabry Kate, of almost every physical ability she had until it eventually took her life just before she turned 11 months old.

Krabbe disease is currently on the newborn screening in only two states, according to Huntershope.org. Had it been tested for in Tennessee and caught before the onset of symptoms, Mabry Kate could have received a life-saving cord blood transplant. Because of Mabry Kate, her baby brother, Owen, has a fighting chance. Because of his sister’s battle, we found out early that Owen also had the disease and were able to get him a cord blood transplant shortly after his birth at Duke University Hospital. Though proven successful, the transplant comes along with an aggressive chemotherapy regime. The average time in which it takes a transplant patient to fully recover and return home is 6 to 8 months.

But now that Owen is at a point where my husband and I feel comfortable leaving him for short amounts at a time, we’ve taken turns going to our hometown in Tennessee on a couple occasions. It’s a refreshing way to keep our sanity and helps pass time a little more quickly until we can bring Owen home for the first time.

Each visit is quick and doesn’t leave much time for visiting every person we would like to. Sometimes we even choose just to stay home and relax on our couch.

The last time I went home, I had a longing to be outdoors. After going straight from losing Mabry Kate during the winter to being in a hospital with our son for 110 days, to now not being able to go anywhere in public or in the sun with Owen, it’s just where I wanted to be. Outside.

I started that Saturday with a much-needed trip to the lake with my mom and dad. It was bittersweet simply because the last time I was on that boat with my parents, we were with Mabry Kate taking her on the lake for the very first time. As I started to dwell on it and become emotional, Mabry Kate showed up, just as she always does.

Even though there was not one drop of rain in sight, much to my surprise, I literally watched as a rainbow was painted on one of the few clouds in the sky. Yes that’s right. Not one raindrop or gray cloud nearby, and she painted me the most beautiful little rainbow.

Following the lake, I made up my mind that no matter how hard it would be for me, I wanted to hike the Chimney Tops trail in the Smoky Mountains with my best friend, Jill. The trail did not disappoint. For me, it was a challenge.

It wasn’t until I returned to Durham and was having a conversation with Jill that I realized how much that hike represented my family’s life.

The way up the mountain was so tough on me, just like this whole journey with Owen has been.

There were parts that were smooth and flat that we just sort of coasted through, much like some intermittent days at the hospital here and there, especially before his chemotherapy.

But those smooth parts were far outnumbered by the steep and rocky parts, just as they have been through Owen’s transplant journey. At times, I’d become worn, tired and discouraged, but my focus was on reaching the top. The views there are breathtaking and so worth the hike. So with the help and encouragement of Jill, I continued. Just like in life.

Our focus is on getting Owen better and getting him home (the top). There have been an uncountable number of times when we have become worn, tired and discouraged, but we have been blessed with an incredible support system who continually encourage and pray for us. So with what we believe is God’s help, and the support of our family, friends and prayer warriors, we press on, our eyes focused on the top.

When we finally got to the top, you could rock-climb the rest of the way to get to the very tip-top. As we began the rock climb, it began to rain. Even though we could see the top and we were so close, there were still obstacles.

In this journey with Owen, we are at the point in which we can see the top. We are almost there. Owen has fought so hard and is so close to getting to go home, but there has been “rain” this week. I’ve become frustrated knowing we are so close, and small obstacles keep getting in the way. But he continues to fight, and we will continue to move forward with him as we approach the top. When we get home, what a homecoming that will be. It will be breathtaking, just like the views from the top of that mountain.

As Jill and I journeyed our way back down the mountain, we both learned quickly that it wasn’t going to be smooth sailing. There were times we slipped or tripped ourselves up, but we finished the hike, and a sense of accomplishment came along with it.

The way down the mountain was a reminder to me that once we reach “the top” and Owen gets to come home, there are sure to be some slick and bumpy places. It won’t be smooth sailing, but it will be beautiful.

This journey we have traveled with our son has been tough, but it will be so worth it. He is battling head to head with the same illness that took the life of his beautiful sister. To see how far he has come only gives me that much more hope for how far he will continue to go.

The hike Jill and I took is just one moment in the midst of the many we have lived. In that same sense, these several months we’ve been here at Duke watching Owen take on Krabbe disease will be a moment in the past as he continues to live life fighting and winning this battle. And Mabry Kate will continue to paint us rainbows as a reminder that she is always with us, and that we will all be together as a family one sweet day.

Follow this journey on TeamMKO.

251
251
TOPICS
JOIN THE CONVERSATION

Watch This Legally Blind Musician See the Notes He’s Playing for the First Time

116
116

Nicholas is a 17-year-old aspiring professional musician with visual impairment.

Despite being legally blind, he is quite an accomplished cellist for his age — he has been invited to play at Carnegie Hall and also plays for the Gwinnett County Youth Symphony in Georgia and the Chamber Orchestra at his high school, according to his GoFundMe Page. He often has to memorize entire songs in order to play them because he can’t see the notes.

However, despite his accomplishments, Nick’s vision still stands in the way of him becoming a professional musician — he has to be able to sight-read music to audition. In order to enable her brother to accomplish his dreams, Nick’s sister Lakisha started a GoFundMe page to help get Nick a pair of eSight digital glasses for the blind. Then, the people at Kleenex stepped in to help raise the rest of the money.

I don’t think there is a better feeling,” Nick says in the video below after wearing the glasses for the first time. “I know that cello is something I’m going to want to do for the rest of my life.”

Watch the touching video below to see Nick play for the first time with his eSight glasses:

116
116
TOPICS
JOIN THE CONVERSATION

How I Turned a Clerk’s Insult About My Neck Into Dystonia Awareness

1k
1k

When my dystonia was severe, my neck was turned and locked towards my right shoulder. Most people would look and not say anything. Then there were some who looked and asked questions, and then there were a few who were downright rude. Those were the tough ones to handle early on because I was already angry for having dystonia and I didn’t need someone to put fuel on that fire. However, one incident made me realize I can turn an insult into awareness when I respond appropriately.

I walked into a convenience store when I was having a particularly tough day. As soon as I went in, the girl behind the counter turned her neck to mimic how mine looked. At first I was taken aback and wanted to lash out at her for being mean. Instead, I stopped myself and realized that although it was rude, she didn’t mean any harm. She thought I was doing it on purpose. Instead of getting upset, I smiled and told her what was wrong. She apologized profusely for mocking me, and we had a nice conversation about dystonia. Instead of creating a scene, I appealed to her sensitive side and it became an education…for both of us! She learned about dystonia, and I learned that every encounter is an opportunity to raise awareness.

Not only did this encounter help me realize every situation gives me the opportunity to teach others about dystonia, it also made me realize everyone responds to us differently and what matters most is how we respond to them. I could have gotten angry, but I looked at it as an opportunity to talk to her. It also made me more comfortable, gave me confidence and better prepared me for future interactions.

Taking advantage of these opportunities helps us educate others, and at the same time, reduce our anxiety about dystonia. Give people a chance to show their compassion by letting them in. Smile. Say hello. Engage them in some way. All of this is part of the process of accepting our condition. When we are comfortable looking or feeling different, our social phobias diminish.

Since it is difficult to understand dystonia, I talk about it with as many people as possible. The more people I tell, the more awareness there is and the greater chance I will be better understood. Talking about dystonia also helps eliminate the stigma associated with chronic conditions, and it makes me feel less anxious and self conscious, especially in public.

There are times I can sense that someone is uncomfortable and wants to say something, but doesn’t know what to say or how to say it. In these cases, I try to break the ice with a brief comment, which is typically a lighthearted joke about my particular symptoms at the moment. Whether or not this leads to talking more about dystonia, at the very least it helps reduce the discomfort that I or others might be feeling.

Talking about it also provides an opportunity to help someone else with dystonia who may not know they have it. This has happened to me several times. After bringing it up in conversations, some people have literally said, “That sounds like what my friend has! I need to tell him/her about this. Thank you so much for telling me.”

Considering how unaware the public is about dystonia, not to mention the many people who are undiagnosed and misdiagnosed, I see it as a responsibility to tell people about it. How is dystonia going to get more awareness if we who have it remain silent? We live with a condition that is not as well known as conditions that affect fewer people. We need to speak up and play a part in dystonia becoming a household name by telling people about it, both friends and strangers. It matters to those of us living with dystonia to keep talking and answering all the puzzled expressions.

Tom Seaman the mighty.2-001

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

1k
1k
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.