To the Teen Who Thinks Looking Different Is Worse Than Dying

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When I write, I have time to think and re-write and take all the time I need. But in conversation, I’m not nearly so verbose. I stutter when under pressure sometimes, and when I reach for the perfect word, it eludes me. This isn’t an issue when I’m teaching; I know what I’m talking about, and my position means I can take my time and express myself as well as I can. But when I’m put on the spot, especially about issues I care about, I struggle.

I had an incident like that today. There was an opportunity to maybe get one of my students to look at things a little differently, and I panicked. Words escaped my brain, and I was stumped.

One of my students was reading a magazine and asked me about a woman in the magazine who had a visible chromosomal abnormality. Her face didn’t look like most of our faces. She looked different, and to this 14-year-old, that meant she was ugly. She asked me about her, and I Googled her condition to try and explain why she looked the way she did. After I explained it, her response was, “Imagine looking like that.” She paused, and I waited to see if she felt empathy for this woman or disgust. The next thing she said was, “I think I would kill myself.”

I started to respond. “People are dealt all sorts of different hands, and as a baby, she wouldn’t have known any different,” I started to say. She screwed her nose up and closed the magazine. “But she’s so ugly.”

In my mind, I saw my daughter, Eva, with her eye that made people take a second glance at her, that made people say, “How sad” when they looked at her. The eye I came to not even see when I looked at her.

I swallowed. I couldn’t respond with something clever in that moment. I couldn’t tell the student how the only difference between her and this woman was a chromosome. That it was down to luck and genetics and a spin of the wheel. That who knew what life held for her, and I hope she was never in a situation where someone could say something like that about her. But instead I said, “Don’t be so mean,” and stood up and walked away.

I don’t blame this kid for the things she said. As a teen, I might’ve thought looking like this woman would’ve been a fate worse than death, too. I don’t believe anybody wants to be the person who attracts that kind of attention, particularly teenagers. Especially not in a world that focuses so much on appearances. I’m fairly certain I would’ve felt similarly when I was 14. If I’m honest, I probably still feel some of that — not to that extreme of course, but if given a choice I would still prefer to look as I do than to stand out for looking so different. I’m not proud to admit that, but I would wager most people feel the same.

I remember Googling eye abnormalities before Eva was born and feeling my stomach roil at the thought that my daughter could look like that. Our faces are the window to ourselves. They are, to all intents and purposes, who we are. Or at least who people see us as. People judge us based on that appearance and what it says to them. While it might not always be fair or right, it’s the way we are wired. By that token, our eyes are so important in expressing ourselves and our emotions. I thought about Eva and how much having an abnormal eye would affect how people saw her and treated her.

How do we try to explain and develop understanding and empathy to ourselves and to others when this is the environment and world we live in? How do we change our viewpoints and those of people around us, without forcing people to go through what we’ve been through? Is it even possible?

And then I think about Eva and how she couldn’t see and how that would’ve meant she never saw those differences. And I know it’s possible to feel that way.

Maybe someone who was faster on their feet would’ve managed better than I did today. Maybe they would’ve taken the moment as a chance to try and change this girl’s view. But I didn’t. I panicked. I left that lesson feeling like I had let Eva down. Let myself down.

If I could sit down again and have a do-over, maybe I’d ask her this:

“What if it wasn’t you, but your sister, your brother, your best friend? What if something happened to them that made them look differently? Would your feelings for that person change? Would you stop loving them? How would you feel if you heard someone saying what you just said about them?

“How is this woman who was born that way any different? How is my Eva any different? Are they not deserving of love, respect and dignity, too?”

I always say I’ll have something prepared for next time, but there is so much about this experience that catches me off guard, I doubt that will ever really be the case.

Follow this journey on The One in a Million Baby.

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To the Parent Hesitant to Find Out If Your Child Has Autism

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To the parent(s) who know deep down that an action needs to be taken to get a diagnosis for your child, this letter is for you.

I know you’re afraid of the answer. Please don’t be afraid.

A diagnosis isn’t the end of the world. It isn’t a life sentence or a death penalty. It’s just a new path for your child, different than the one you may have had in your mind.

As someone on the autism spectrum, I understand.

I know you don’t want your child to get treated differently in school, but a diagnosis will help them longterm. Most important, it will help them understand why they’re a little bit different than everyone else.

I was diagnosed with a learning disability when I was 7, but I didn’t get a bit of relief until I was diagnosed with Asperger’s syndrome at 19. For me, the fact that I couldn’t completely understand myself led me to want to take my own life.

An autism diagnosis is not the end of the road, it doesn’t mean your child is unintelligent and it doesn’t mean he or she will spend all their time in special education classes. But a diagnosis does give you the opportunity to defend your child’s rights. A diagnosis does give them a chance at occupational therapy or speech therapy or something along those lines that may come in handy for them.

The sooner you get an answer for your child, the better.

Please realize you may need to explain something a typical child will automatically know like: bras, deodorant, how to make friends, what is and isn’t OK to say, how to keep a conversation going and even sarcasm. That’s all OK.

Please explain autism to your child. It will help, I promise.

Please understand that meltdowns may occur at home but not at school, and that’s normal. This happens because at home they can relax and be free of society’s social pressures/sensory overload. I’m 26 years old and this still happens to me.

From one person on the autism spectrum to a parent of someone on the autism spectrum, please know this: even if you don’t want your child to be treated differently, it’s important to get that diagnosis.

Sincerely,

An Adult Aspie Who Wishes She’d Known Sooner

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4 Parenting Lessons Only My Anxious Children Could Teach Me

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I decided I wanted to be a child therapist long before I ever had children. I finished graduate school before I even began motherhood. I knew all the signs and symptoms of every childhood mental health disorder before my first child entered the world. You would think I was well-prepared. You would think if anyone could handle anxious children, it would be me. Apparently the universe shared the same sentiment — it dutifully delivered me child after child with some form of anxiety in their DNA.

At first I was in denial, quickly rebuking my education and profession by thinking, “Come on! These things seem normal to me. What’s the big deal?” Eventually the reality started to sink in. No, not every parent has to worry about going on the highway because their 3-year-old starts to panic. No, not every parent has to talk to their 5-year-old about what will happen when they die.

Twelve years and three children later, I’ve embraced anxiety as much as I embrace my children. My children have taught me more about life than any textbook ever did.

They’ve taught me…

1. That I need to believe in them — not in their fear.

Early on I found myself accommodating my child’s fear. She doesn’t like highways — I should find an alternative route. She doesn’t like elevators — let’s find the stairs. But over time, I realized she was more of a fighter than I was allowing her to be. She was tired of her worries and wanted them to go away. Instead of turning away from her fears, I began to hold her hand and we faced them together. One small step at a time.

2. That my fears aren’t always their fears.

Sometimes I find myself inadvertently putting my children and their worries into tiny, predictable boxes. I play out scenarios in my head and anticipate how situations will unfold. Luckily, I’ve often been wrong. It make me realize I can’t underestimate my children. I think I was more nervous about kindergarten than my son. I walked him to the gate on the first day waiting for the meltdown. Waiting for the battle to start. Wondering if the school counselor was in on the first day. He turned to me and said, “You can go. I’m good.” And he didn’t look back. Not once.

3. That my words can tear them down and lift them up.

From my experience, anxious children tend to be much more sensitive in general. My kids are no exception. They love hard and hurt hard. Sensitive children often have the biggest hearts. My 3-year-old is the first to notice when I’m having a bad day. She’s also the first one to sulk in a corner for hours when I correct her behavior. She is the one who frequently asks, “Are you proud of me?” five zillion times a day. I realize now my words have weight. They’re actively shaping the way she views herself. I’ve learned to be cautious with my words — as they can tear my little girl down in a heartbeat or lift her up. I’m in the process of helping her develop her own inner dialogue.

4. That my children are watching.

They are watching my reaction. They are watching my emotions. They are watching my choices. Emotions are contagious, especially when your children look for you to be their anchor. And my anxious children are observant. When I’m nervous, they’re nervous — sometimes sadly when they wouldn’t have been otherwise. I’ve had to develop a good poker face. Sometimes I can do this and sometimes I fail. But, I always try my best.

I’ve learned to stop worrying about their worries as much as I can. I take one day, one fear and one phobia at a time. I remember when my oldest daughter couldn’t sleep unless she was holding my hand. I thought she’d sleep next to me forever. She is now 12 and would deny that ever happened. (Oh, it happened.) I remember not too long ago when I thought my youngest would never go poop in the potty. Her fear was palpable — she walked around holding her bottom saying, “I no poop. I no poop!” That too has passed. We are on to the next challenges life inevitably brings but with a new belief. A belief in my children. A belief in their strength. In my strength. A knowledge we can get through whatever life wants to throw at us — one day at a time.

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Jockey and Brother With Down Syndrome Break Down More Than One Barrier

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Meet Australia’s new favorite horse-racing siblings.

On Tuesday, November 3, jockey Michelle Payne became the first ever woman to win the Emirates Melbourne Cup, which is one of Australia’s most prestigious Thoroughbred horse races. Payne says she couldn’t have done it without her brother, Stevie, who has Down syndrome and works with the horses at Darren Weir stables, BuzzFeed reported.

Michelle Payne, 30, was the only woman in the cup and rode a horse named Prince of Penzance to win the $6.2 million race at Flemington Racecourse, CNN reported.

Her brother is known as one of the best “strappers” around, a term that means person who looks after racehorses. He gave his sister a great start to the race by picking out number one at the barrier draw, which gave her a favorable start gate.

I think it’s great for other people with Down syndrome — to see how capable they can be in normal life,” Payne told ABC. “Stevie can pretty much do anything, and look after himself when he’s on his own.”

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The siblings are the two youngest members of the Payne racing family, which is well known in Australia. Of the ten Payne children, eight became jockeys.
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Watch the triumphant moment Stevie Payne leads his sister and the winning horse in a victory lap in the video below:

VIDEO: Enjoy the moment strapper Stevie Payne leads 2015 Melbourne Cup champions Michelle Payne and Prince Of Penzance back into the yard.

Posted by Racing.com on Monday, November 2, 2015

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To the Woman Who Said I Didn’t Have the Experience to Help My Brother

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To the Woman on the Bus,

You probably don’t remember me; it’s been a while. But about 15 years ago, you taught me a lot. You taught me that even though our relationship may be different than other siblings, at the core of it all, I’m my brother Scott’s sister, his only sibling. You taught me that despite how hard a life it can be sometimes (most of the time), being Scott’s sister has made me a stronger and kinder person than I would have ever been had I grown up without a brother with severe developmental disabilities.

You taught me my relationship with Scott will shape the character of the woman I become.  And I’m luckier for it.

We were leaving one of the Disney World parks and heading back to our hotel room. Disney World was a regular vacation our family took. Most, if not all, of Scott’s communication was through a spelling board, but he always made it clear when he wasn’t into something. Disney World was one of the few places we knew he loved. That particular day I was trying to give my parents a break and had taken the bus into a park with Scott and a friend who was on vacation with us. About three hours in, we had reached our limit, and I could feel an anxiety attack coming on. I knew his signs, and it wouldn’t be long before the hand-wringing started along with loud yelling.

About five minutes into the bus ride, he was in a full-blown panic. This was before there was a lot of information out there about low-functioning kids. This was even before everyone had cell phones. My parents had worked hard to treat Scott like any child was treated, and as a family, we had created coping techniques in case an “episode” happened in public. To be honest, there weren’t many, and most of them were just getting through the worst parts until we could get somewhere safe and quiet.

After a few minutes, you came up to us. You leaned down and started to talk to Scott. You tried to grab his tense fists; you tried to give him a hug. This was one of the first times it was just Scott and me while he was losing control, and it was the first time a stranger had approached us without our parents. I had no idea what to do.

When I asked you what you were doing, you simply said, “Well, I teach special ed, and you clearly don’t have the experience needed to deal with a behavior like this.” It’s been 15 years, and I still remember what you said.

But I did know what to do. I did have a plan. Maybe it wasn’t extensive and maybe it was behavior triage, but I knew what I had to do. I knew Scott hated being touched when he was in the midst of a behavior. I knew if I could just make it to the resort, I could let him walk it out after we got off the bus. I knew if I could just get to my mom and dad, it would be OK.

But you didn’t ask permission. You didn’t even say hello before you tried to take over. Looking back, I’d like to think you felt you were being helpful. But being helpful would have been taking the time to know us before you stepped in. Being helpful would have been sitting next to a scared 17-year-old girl and reassuring her that no one was staring; and even if they were, who cared? Anything other than what you did would’ve been helpful.

I have to admit I probably could have handled you better. I probably didn’t have to tell you I would tell Scott to kick you in the shin if you didn’t back off. I could have done a lot of things differently that day.

But I was kid. You were the adult.

I never worried about speaking up for Scott or myself after that. If I could handle a Disney World bus ride on a hot summer day, I could handle pretty much anything for my brother. And I’ve been able to handle you — in the many forms you’ve shown up in our lives since.

Scott still can’t tell me he loves me with words or drive to our apartment when my mom gets on his nerves. I still get annoyed he has to listen to loud music at the dinner table or worry when my parents don’t sleep for a few days because he’s having a rough month. Our relationship will continue to be complicated and challenging as we get older. And Scott will continue to shape the person I am, even the mother I want to be one day, and that’s a good thing.

Because till the day I die, I’ll be Scott’s sister. And I’m OK with that. Just look at his smile. Wouldn’t you be, too?

Yours,

The Girl From the Bus

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When You Become the Mom Others Turn to After a Child’s Diagnosis

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My friend’s child just got diagnosed with a brain tumor.

Unfortunately and sadly, I get that message often because my own daughter, Reese, was diagnosed with a brain tumor in 2012. My friends come to me for advice and want to know if their friend can message me, if there’s anything they can say to their friend and what should they do. More often, I get messages that a friend’s child was diagnosed with another form of cancer, and they want to know what to bring to the hospital.

These messages are never a bother. They are so welcomed. I consider the fact they come to me as a compliment of sorts. It isn’t a compliment I necessarily want to receive, since I wish I knew nothing of the subject, but it’s one I take anyway. The people who message me trust me enough with their hearts and emotions to invite me into their private lives.

I say a lot of the same things to the people who want to help their friends. I remind them to do things instead of asking what they need. I tell them to bring food or give their friend a Visa gift card. Pay for a maid service, pick up their other children from school or give them a hug.

But when I finally say hi to the new mother whose world has been thrown upside down, I can see who I was. I can see how far I’ve come in many ways and how time doesn’t change things.

I notice how quickly these mothers adapt. Three years ago, I was that mother who felt as if I were in some sort of cage where no one could see or understand me. There were tears in their eyes with absolute sympathy and love, but they were still on the outside. I had a few people around who did understand, and really, that’s all that I needed — someone to say, “Yes, I know.”

And now I’m that person. The blessing of it all is watching how these moms grow and change. Once scared mothers now throw medical dialogue around as if it’s their native language. They list procedures and talk about medicines like a nurse studying for a test, but they’re just moms like me.

I’ve had one-minute conversations with people who had a question about chemo or a test. I’ve talked to people for hours just about nurses or hospitals. They ask me, “What would you do?” All of this goes both ways, since we need each other.

But I’ve also talked with mothers late into the night about their child, only to pray into a puddle of tears as their child takes their final breath months later. I’m so grateful these moms have let me into their lives for that tiny sliver of time. And I’m even more grateful when they let me continue to stay in it with them.

I talk to friends of those mothers who just want to understand. Sometimes they come asking medical questions that I try to answer as best as I can. Sometimes they feel desperate to help them, and the only thing I can do is say to love them. That is often the hardest thing to explain.

All of this reminds me how much our journey is about others. We aren’t alone in a cage. We’re part of a community where we all need someone.

I was taught early on — through other mothers’ kindness and love — that it’s important to take our own struggle and turn it into strength for someone else. Thank you for letting me be that person for some of your loved ones, even if just for a moment of time. Because no matter how much time goes by, I will never forget the fear I felt not knowing what was going on with my child. I will never forget crying until I fell asleep in the ICU.

I hope I never forget. Those feelings are what propel me to try harder when I feel as if I’m on empty. I’ll appreciate the tantrums as well as the smiles, and I’ll enjoy every day — even the terrible ones I superficially want to end.

amanda.1-001

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