How one photographer is reframing beauty

Click on the link and see how Rick Guidotti’s has dedicated his life’s work to reframing how we see beauty. His message is my message. He was first inspired when he took a look in medical text books and found the images of genetic conditions were horrifying. He knew that there was another way to present differences between humans. On the inside we are all the same. Society has told us how to think and what to think beauty is. It’s time to change that and look beyond those messages!

“I dare you to see beauty!”

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“I figured if my story could change a person’s mind about another person, or especially a child’s mind about another child, then it was the right thing to do,” – Loretta Claiborne

Yesterday I attended the Special Olympics annual “Summer Games” event. Attendees came together to celebrate with the 1,100 courageous athletes who were competing!

I wanted to post this TED talk in honor of this weekend.

Special Olympian and inspiring speaker, Loretta Claiborne, stands in for Tim Shriver (CEO of SO) and stands up for people with disabilities. He told Loretta that she was the right person to give this talk, and he was right. She speaks fearlessly from her heart! Special Olympics gave her a voice and a platform to spread the message of inclusion and civil rights for people with intellectual disabilities.

Check it out and share it!

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What my mom has taught me

My mom has taught me sacrifice, patience, unconditional love, perseverance, and strength. Image

Eric was placed into the perfect woman’s arms.

I never really think of my mom as a “special needs mom”. I think of her as “my mom”, but she is way more then that. She is a woman who would give you the shoes off her feet, jacket off her back, her last drop of her favorite drink on a hot day, the last bobby pins from her drawer, or her last free second she has to herself. I shouldn’t even say she would because really, she does all of those things. She takes care of every one! She is my brother’s primary care giver, she takes care of me, my sister, my dad, my dad’s brother, my dad’s brother’s caregiver, my dad’s dad (and before his mom), my cousins, her friends that started out as her tenants, my friends, my friend’s parents, members of her church, …. The list goes on. On top of that she NEVER complains or gives up. 

My mother’s motherhood has been different then most. Once I got over my “too cool for you mom” stage and started seeing my mom through a different “grown up” lense, I began to appreciate her more then ever. I know that she yearns for more time with friends and family. She gets SO happy when she gets to see me. She will even drive 45 miles out of the way to bring me laundry that I left at her house. And I know that if she could, she would join that zumba class that goes on once a week in her community. But being a special needs mom, she is always with my brother. Up until a few months ago, she had no extra help! As I have said she doesn’t only care for my brother, she is constantly thinking of others which doesn’t leave her the time to nurture and maintain the relationships that SHE really needs.

Do you remember when you were a younger child, or when you had toddlers… how you had to get in the car when your mom needed groceries. Or be walked to the park when you wanted to go outside? Eric basically needs a babysitter 24 hours a day at 22 years old… so when my parents want to go to a concert, they bring him a long. Or when they want to celebrate their 50th wedding anniversary in Idewilde… they bring him a long. My parents haven’t spent a night away together from Eric in years.

Getting out is tough. I know dates have gotten harder since both me and my sister moved out. Special needs parents have to work extra hard to preserve their marriages. And because there isn’t much time for friends, my mom has to rely on my dad to kind of be her BFF. . . . and you can only imagine how well that goes. He is supportive, patient with my brother, and loving. Eric would be totally lost without him. Sometimes (more so when he was younger) Eric would wait up and sit in the garage until my dad’s car pulled in at the end of his long days at work.

My mom lost her sister to breast cancer way too early. She also lost her mom way too early. My aunt’s three children lost their mother to breast cancer and their father to alcoholism so my grandma stepped in as their mother…. She recently told my mom “Your three kids are lucky they have you… and my three kids are lucky they have me.” ….. but who does that leave my mom with. I feel like because my mom is so strong, independent, and it seems like she has everything under control—my grandma just let her fly on her own wings. But everyone needs their mom. I know she worries under the surface.

 In an effort to shorten my posts up, I’ll end with this. My mom hasn’t ever heard the phrase “I love you” from Eric’s mouth but she is fluent in transforming the language of touch. When Eric puts his head on your head and “pat pats” your back, you know your getting looooved on! I know that she savors the gift of having her children tell her that they love her.

So my lesson tonight is to go ask the people who care for you how they are doing. Go give them a hug. Tell them you love them. Because chances are they just need someone to try to understand the overwhelming conflict of emotion that comes from trying so hard to be everything to everyone.

 

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I need you.

Caring for the Caregivers. I found a really great blog today that provides a space for caregivers to share their experiences and express themselves. I’ve been thinking about my parents a lot lately. They do much and ask for nothing in return…I don’t tell them how grateful I am for them enough. 

If you’re reading this, I hope you’re inspired to ask the people in your life what they need! 

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Eric’s the name; Yogurt’s the game.

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**I have been completely MIA and totally slacked on keeping up with this blog. But I’ve been re-inspired and am ready to let these words flow through my fingertips and into this space again.** 

Over these past few months my life has taken a turn in a new direction, one that I am very happy and grateful for. I was recently accepted into an Occupational Therapy Assistant program at Stanbridge College. It is one of ONLY four OTA programs in all of California. With the field expected to grow by 40% over the next ten years the demand for practitioners is very high. With a high demand and very low supply, the available programs that are near me were completely impacted! I’m talking a three year waiting list just to get into a program at the local community college and completing all sorts of prerequisites just to be considered (and no guarantee of acceptance). I’m lucky to have found Stanbridge and have been able to get this process moving a long quickly! The overwhelming benefits I saw from joining such a vibrant and evolving field and the intrinsic need I have to learn as much about care (mental and physical health) in order to best serve the needs of my brother has led me here.  I have just completed Anatomy and Physiology and I have to say I have a brand new respect and fascination with the human body. Every system interacts with one another to create a unique and complex being. Every individual that lives and breaths in life is a miracle and should be treated as such. It has been an intense beginning to the program but I have learned A LOT and am hungry for all the knowledge I will be gaining over the next couples of years!

Speaking of hungry… 

Let’s talk about Feeding, Eating, and Swallowing management (in OT terms 😉 haha) As you may know, eating is a highly complex multisystem skill that we often take for granted. So, it makes sense the causes of feeding disorders are often multifaceted. Feeding disorders are often not due to one variable alone but to a complex interaction of both biologic and psychological variables. In fact, research has shown that most feeding disorders can be characterized by medical, oral-motor, or behavioral problems.

Like many behaviors that Eric displays, I did not realize how dysfunctional his eating habits were until I started to understand autism and began looking at EVERYTHING in terms of “behaviors.” My training in Applied Behavior Analysis was the first thing that got me thinking about how important intervention would have been in managing Eric’s eating habits when he was younger.

Eric endured a minor heart surgery when he was 18 months old and right after that he eliminated everything but pasta, yogurt, and applesauce. I can remember opening the refrigerator and seeing stacks on stacks of yogurt, large ziplock bags full of noodles and marina sauce, jars of applesauce, and of course a grip of juice boxes filling the doors and shelves. Up until that surgery, he would eat some fruits like peaches, bananas, cantaloupe. He also ate rice, pretzels, french fries and chips!

Eric would alternate between the three and also enjoyed a special oats, yogurt, and powder multivitamin concoction for breakfast. Because his speech was so limited my dad thought it might be a good idea to undercook the pasta to make it harder to chew so that it would strengthen his muslces in his mouth. But after 3 or 4 days of uncooked pasta he refused to eat it at all. Remember, Eric is pretty much non-verbal (he can’t communicate by talking) so we really had no idea why he cut out so many foods.

As Eric grew from childhood into his teenage years, his body started to grow and change a long with his appetite. Currently, Eric eats FOUR large tubs of yogurt daily with ease, and now if my parents give him half of the tub of the big yogurt and put the rest away in the fridge, he will wait until they are gone and not looking to retrieve it himself, eat the other half of the tub, and then sneakily replace the EMPTY container back into the fridge for my parents to find hours later!! Sneaky eh!? Another example of the unleashed intelligence he’s got going on in that head. He knows what he is doing.

My brother didn’t go into the refrigerator by himself for years when he was hungry or thirsty to retreive his yogurt or juice. He would wait in his chair at his table until someone brought it to him until VERY recently and only under those certain circumstances does he actually go and get his food. Usually a spoon is given to him but he can feed himself. From there he could open the cups or tubs and usually put his straw in the tiny juice box hole (although that skill took a little while to master and sometimes he struggles).

When he finishes his meal he will leave his dirty bowl, yogurt cups (except the ones he sneaks back), and juice box trash on the table. Those items MUST stay there until his bedtime! ONLY then can he throw his trash away and place his bowl in the sink. If anyone attempts to change up that routine. He will be very frustrated and get everything out of the trash and the sink and put it back.

As far as eating as a social experience… Eric’s eating habits have affected the way our family experienced mealtime. Eric has a specific seat he HAS to sit in. And don’t even think about sitting in his chair, you’ll get booted! I’ve seen it happen before haha. When we went out to eat we always bring a lunch box full of little yogurts and tell the waiters when they ask that he eats special food.

So let’s review a little bit and talk about these behaviors…because after all, I’m trying to learn why Eric has developed these habits and how we can potentially help him! I’m going to do a little behavior analysis for you.

Behavior: Is not willing to try new foods.

Eric has A LOT of trouble with any transition and needs routines to feel calm SO as new foods were being introduced…Eric’s anxiety shot up! When Eric cried and screamed and threw his food or refused to eat (I’m talking refusal for hours, OR days) … that non preferred food was taken away and replaced with something we knew he would eat. SO what did he learn and what did my parents learn!?

The food refusal is reinforced because he was rewarded by getting access to the better tasting food (yogurt) AND he got more attention for it. My parents learned that Eric wouldn’t eat unless the yogurt was offered so they began to only offer the yogurt (but worried).

Behavior: Selectively by texture

It’s obvious that Eric prefers soft, pureed food. He will drink anything! He loves smoothies and milk shakes! Anything with a texture is a no-go.

We have gotten him to lick some chocolate and frosting on birthday cakes. Yep, that’s right. Eric LOVES birthday’s!! His favorite part is blowing out the candles. When we were little he would never wait for us to finish singing “Happy Bithday” before he blew them out! Oh and it did not matter who’s cake it was. Eric would usually make it his job to put out any candle in front of him. You can only imagine the reactions he got from classmates, cousins, and his little sister!

I’m really not sure there is much we can do about Eric’s eating dysfunction. Besides juicing fresh fruits and vegetables and continuing to get him multi-viamins in his oatmeal. Yogurt has been Eric’s one and only for thirteen years. Yogurt makes him happy.

I recently sat and ate a meal with him and watched the smile light up his face when his tummy was full. He was hamming it up for the camera and there’s nothing better then that face!

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“No boys aloud! except Eric.”

For this post, I wanted to give you a little idea of the kind of relationship Eric and I had when we were little kids. I think the picture of the sign I posted on my bedroom door speaks for itself. And you’ve got to love the spelling error and the hello kitty paper haha. But just so you get an even better picture, here’s a little story.

My mom always liked to have talk radio on in the car when she was driving us here and there. Apparently, I was a very receptive child because she told me that one day as I sat in my car seat in the back of our van, I began to comment on the situation the caller and the radio host were discussing. The man calling in was complaining that his wife wasn’t doing something or other for him (we both don’t remember what it was, it’s insignificant either way) when I chimed in with “Eric’s wife will do that for him!”

My mom looked in her rear view and tried to come up with the best way to say this–“Oh honey, Eric probably won’t have a wife.”

My response (with a scowl): “What do you mean he won’t have a wife?”

Mom: “I don’t think anyone will want to marry Eric.”

Me: “Hmph. Well if no one wants to marry Eric, then I will marry him.”

wow…pause.. for a smile and to laugh at myself :)..haha…

I was totally taken back by this revelation. Why wouldn’t anyone want to marry my awesome little brother!? He never took my barbie dolls or complained about me occasionally giving him make-overs. He swung on the swings with me, rode trikes, and danced along to all my favorite disney songs. Even though he came into my room without knocking when my friends were over, I never let it phase me. Hence the posted rules. I always just expected my friends to accept his presence. He would make his noises and laugh to himself, occupied by whatever was going on inside of his head. But I never let anything bother me. Eric was part of the package at my house.  And that’s how it’s always going to be.  He’s part of my package.

So the lesson today is, that there is a place and a reason that disabled persons are put in this world. They may not fit the norm or live a “typical” life but really, who’s life (and family) is typical!?

Now it’s not necessarily about the people coming into my room (and obviously the sign on my door looks a little different now as a young adult haha) but it is about the people that want to come into my life. They have to know that Eric will be part of the package..forever. I will never allow him to be put in a place where he is segregated from the rest of the community. Eric will be with me. And that is the type of sister I am to him. Although I was unaware at the time, growing up with him was already teaching me patience, acceptance, and understanding.  I can only hope that he will teach my kids, and everyone he encounters, the same lessons he taught me.

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My little bro

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This is me and my little brother, Eric. Spoiler alert* This is not what we look like now.* Although, he was a little ahead of the trend of people sticking their tongues out in photos (I don’t understand why this came about!) Anyways, I’m Emily. I’m 22 years old, living in Long Beach, CA. I just recently finished up my degree from Long Beach State and am currently searching for where I belong in this world…oh and employment. I am only 12  months and 10 days older then my brother. He lives at my parent’s home with my younger sister in San Diego County. Moving away from Eric was a really hard thing to do. Most of you grow up and leave your childhood homes and when your siblings miss you they can instantly shoot you a text, send you an email, post on your wall, or even read what’s happening in your life through your blog posts.

But not Eric. Eric doesn’t have expressive language. By that I mean, he cannot verbally communicate. He has a very limited vocabulary. Most speech pathologists and educators dismissed him from an early age saying “He will never talk.” And this is where this blog comes in. It wasn’t until I was old enough to understand what it means to live in a society where labels direct the public to segregate, constrict, and confine the human mind to form attitudes and opinions based on a word; did I come to realize how screwed up that sentence really is. Eric was never taught basic communication skills, not because he didn’t want to learn how to communicate, but because other people told him he couldn’t. The people who were supposed to be advocating for him, were doing the exact opposite of their job descriptions.

If there is one thing I have learned growing up with Eric, it is that he possesses traits that none of us could ever imagine being blessed with. He has never told a lie. He has never been in a fight with his siblings, his parents, teachers, or friends. All those judgements we make about ourselves and our bodies, Eric doesn’t worry about those.

My dad came up to visit me last night and we were discussing other people’s reactions to Eric’s dependency on our family. He was saying that all of these things he does for Eric like get him up every morning, put on his clothes, put on his shoes, make him breakfast, drive him to the bus– are all so second nature. He takes comfort in the fact that he doesn’t have to worry about his son going out to parties and driving drunk, doing drugs, getting into trouble at school, or hanging out with the wrong crowd.

Eric has taught me about the core elements of being human–about the universal human need for love and for other’s support in reaching our goals.

So this is how this blog begins. I hope you will follow along with an open mind and learn that the term disability is really just a label. I want to show you how to look at disabilities in terms of abilities and celebrate the beauty of differences in our world.

Thanks for being here with me.

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