Team Kellan

Meet Kellan:

Isn't he cute?! His parents are helping raise awareness and fighting for a cure for Angelman Syndrome. Please support them in their walk if you can. Information can be found here.

The New R-Word

Today has officially been set apart by r-word.org as the day to spread the word to end the word.

The fabulous Ellen created this video, and I think it does an amazing job of explaining WHY the word is offensive. Too many people think we're being too sensitive and need to just relax instead of running around telling people to stop using a word. I doubt any of them would have a comeback for this: 

My favorite part starts at about 1:10....

"It's just slang!" you might say. 
"It's just a joke!" 
"I'd never actually call your son a retard." 
Thing is, every time someone uses the word "retard,"
they spread the idea
that people like my son are
stupid, dumb, slow, incompetent, pathetic losers.

Thank you, Ellen, for giving us something to answer the question of WHY we are so adamantly opposed to this word. Let's all spread the word. The new R-Word is RESPECT!
 

Rare But Strong Together

Traveling Bears

Do you know a child who would love a visit from a cute and cuddly teddybear who just so happens to have the same disability as they do? These friendly bears are on a very special journey spreading awareness, encouragement and love by visiting families all over the world. This mission was brought to life by a very young 7 year old boy named Elijah and his mom. They wanted to raise awareness for his diagnosis Pediatric Stroke, and thus the Traveling Awareness Bears were born.


The effort took off and was even more successful than they could have ever imagined, bringing along the conception of multiple bears with varying diagnosis’s known as the Bearowicz family. The bears are allowed to visit the home of a very special little girl or boy for 1 week, and for individual circumstances up to 2 weeks.They arrive with a journal and a passport in tow. Each child gets to stamp the passport and marvel at how far and wide their bear has traveled to be with them. (pretty awesome huh)?The bears hate that they have to leave after just 1 week but they are mindful that their job is very important and they have friends around the world that need them too.The bear is allowed to go almost everywhere, to schools, Dr.s appointments, surgeries and even while they are attending horseback therapy lessons. The organization is to taking suggestions on other disorders, diseases,syndromes, and disabilities but for now the bears that are making the rounds are...Pediatric Stroke, Autism, Congenital Heart Defect and Rare Chromosome Disorders, lymphatic malformation, Chiari malformation, cerebral cavernous malformation, EA/TEF and they are also working on diabetes, epilepsy, leukemia, hearing impairment, ADHD/ADD.. Their goal is to eventually have bears for all of the things that affect our children. If you would like a member of the Bearowicz family to come visit your home for a week Click Here .The organization is currently in the process of becoming a non-profit 501c3 but in the meantime has a WISH LIST Please take a moment to see if you can help out with any of the items on their wishlist. They are not expensive items and some of you may have things around the house that would be helpful to them.Traveling Awareness BearsP.O. Box 1513O’fallon, MO 63366

Fishbowl Cards

I wanted to share a resource I recently found, Fishbowl Cards. They sell special needs-related cards and posters, they have some really, really cute things! Here are just a few....

Embrace Diversity!

Sparkle Effect

I saw this article on the ams vans blog. It made me smile, so I had to share it!



Sarah Cronk, the creator of the Sparkle Effect, a non-profit organization that helps high schools around the world create inclusive cheerleading programs, was awarded the $100,000 as part of VH1′s Do Something Award. The award recognizes teens who promote social change, and Sarah’s organization aims to help teens learn that individuals with disabilities are capable of great things. Just 18-years-old and cheerleader herself, Sarah created and coached the first inclusive cheerleading team that includes both students with disabilities and without disabilities when she was just 15-years-old!



Sarah started an inclusive cheerleading squad—the Spartan Sparkles—at her high school after noticing the struggles of her brother, who has autism, to fit in and find social outlets. Her brother was befriended by the school’s swim team captain, and Sarah saw how this simple act of inclusion changed her brother’s life for the better. A cheerleader herself, she wanted to help other kids with disabilities like her brother’s have a better high school experience and enjoy sports and other extracurricular activities that they had not been able to enjoy.



The Spartan Sparkles cheerleading squad, which performed at sports games along with the regular squad, was a huge success. In 2009, the program reached capacity, and instead of congratulating herself on a job well done, Sarah wanted to expand the program. She then created the Sparkle Effect with the goal of helping other high schools create similar inclusive sports programs for teens with developmental and physical disabilities. The Sparkle Effect provides mentors, support, training, grants for uniforms, as well as a free starter kit for schools and organizations who want to start inclusive sports programs.

Map of Sparkles Cheer Teams Across the USA

“Students at all the schools have reported that cheerleaders who are on the squads who have disabilities are being included outside of the squad,” Sarah said in a video that aired during the VH1 show. “People are more willing to talk to them at school. It puts the spotlight on their abilities rather than their disabilities.”

The Sparkle Effect now helps over 50,000 students with and without disabilities understand the importance of inclusion. The Do Something Award will help the program expand and reach even more teens, so that a new generation of people will be able to understand that abilities are more important than disabilities.

Three cheers for Sarah!


Sources:
http://www.disabilityscoop.com/2011/08/23/teen-inclusive-cheerleading/13790/
http://www.huffingtonpost.com/sarah-cronk/the-sparkle-effect-when-e_b_929193.html
http://www.dosomething.org/
http://www.thesparkleeffect.org/index.php?pg=18

Sweet Awareness

October is awareness month for a lot of things. For many moms, every day is awareness day. Here are a few things I've seen to help raise awareness.

I saw this on Parenting Special Needs' facebook page.

October is disability awareness month. Support our initiative to educate our communities about acceptance of people with Different Disabilities & Abilities.

Your Assignment:
♥ Start a Conversation ♥ Read a book to a group of children that emphasizes difference and fosters acceptance ♥ Share a personal story ♥ Pass on information about a disability ♥ Display our FREE poster ♥ Acceptance begins with a Smile : )

Rett Syndrome Awareness

from Brooklyn Ashleigh Butler...

Mitochondrial Disease Awareness

A touching post from Life With Jack...

A post about Mitochondrial Disease

and other awareness activities

by Mama Mia...

Spina Bifida Awareness

Faces of Spina Bifida

Daily photos & stories on the blog Beyond Measure....

Down syndrome Awareness

31 for 21 from Unringing the Bell

Daily posts from lots of blogs!

Grab This Button

Sweet message from Boston Clark Butler's blog

Dwarfism Awareness

Let us know if we're missing anything. Help spread awareness!

Walk Now for Autism Speaks

5k's are going on around the country to raise funds, awareness, and support for Autism. I know that many of our children fall in the spectrum. If you'd like to support an event near you, go here to find out the details!

National Microcephaly Day

Today is National Microcephaly Day. And so today, I celebrate my daughter.



And, I share some facts: Microcephaly affects 2.5% of the entire population. Microcephaly is a neurological disorder where the head circumference is less than it should be on a typical child. Microcephaly can be present at birth or can present itself within the first few years of life....Some children have mild to moderate delays, while many others have severe delays. Some children are diagnosed with Primary Microcephaly while others have an associated syndrome or a long list of diagnoses.

info taken from Foundation for Children with Microcephaly

While I was pregnant, we knew Samantha had microcephaly. We just didn't know why. Five years later, I may not know how she developed microcephaly, but I think I understand a bit why she has it. She has microcephaly to teach me. To help me. To guide me. To refine me. To share with me the love of God. And to make my heart melt ~ because we all should feel that. I said it today already, but I'll say it again. If microcephaly is responsible for giving me this gem of a girl, I'll take the whole package.

If your child or someone you know has a child who is diagnosed with microcephaly (or other closely related neurological disorder), you can visit the Foundation for Children with Microcephaly for more information and to connect with other families.

Kidz Makes the News!

KSL Newsradio, a Utah station, highlighted us on their show and website today. Check it out here!

People Who Hurt People

I am so glad I came across a post on the blog Teaching All Students (a blog I recommend!) because I was directed to these videos, and I quite simply had to share them with all of you.

Special Needs Adoption

by Elizabeth Fennelly of Following a Call to Adoption

Special Needs Adoption? Me? I’d never have considered myself “special needs adoption” material. I’m a “planner” and, although I generally ignore it, the fact is that I’m freakishly analytical. I think, rethink and over analyze everything… to death! I’m the kind of person that keeps pros and cons spreadsheets and right now, the analyst in me is freaked out and hyperventilating, wondering how it’s possible that we’re preparing to adopt a functionally deaf and blind toddler. Yes, I checked “blind – okay” on my spreadsheet, but deaf? No, that certainly wasn’t on my list and deaf AND blind, you better believe that wasn’t part of my plan! I’d planned it all out. We would adopt internationally; we’d adopt two little boys that wouldn’t have a home without us, but came “no strings attached”. I wanted orphans because I couldn’t face the guilt of delighting in my child, knowing that my joy came at the expense of another mother’s broken heart. So, no, a local little boy with significant handicaps was absolutely not part of my plan.

Am I panicking? Yes, I get a case of the “panic attacks” at least once a day and I ask myself over and over what I am doing and whether I’m about to make a huge mistake, one that will affect not only me, but the person that I love like I never imaged I could and who loves me no matter how obnoxious I am, and then, there’s this little blue-eyed miracle baby that doesn’t know we exist. But, no matter how many questions the rational me asks and how many frightening scenarios my mind creates, I don’t care because I love this child and it is stronger than any of my fears.

Am I the special needs adoption type? Yeah, I’ve still got to say that I’m not, as far as I’m concerned, I’m not adopting a “disabled” child. I am in awe of this toddler, who is happy and curious, despite facing a cross that makes my diabetes seem about as burdensome as a cold. I am fascinated by his ability to adapt and interact with all the “normal” people around him and by the fact that, although most people would consider him completely cut off from the world, he is affectionate and loving, recognizing when his foster mom is unhappy and delighting in making her laugh. This baby, who qualifies as both deaf and blind, and, according to society’s perspectives, is nothing but a burden, has a set of birth parents that loved him so much that they gave him up for adoption when they realized that they could not meet his basic needs. In addition to his birth parents, my little boy’s foster parents absolutely adore him. His foster parents have cared for him through his “deaf, blind, will never crawl or walk, or talk” diagnosis and, with the determination that can only be found in love, refused to accept that he would be condemned to a wheelchair and taught him to crawl, and to walk, and to run. And then, here we are, two random adults that have never met this little survivor, but are prepared to love him forever, not because we’re preparing to talk about how wonderful our kid is doing in school or what a great career he has, but because “there is no me without you”. That’s three complete sets of parents that are prepared to step way beyond their comfort zones, two of whom have or will have their hearts broken by loosing this little “burden”, and accept that sorrow because they love him. How many children have that kind of batting average? This is an amazing child and, God and the Province willing, I will rejoice in being his Mom.




We adopted a special-needs child, not because he was the best we could do, but because he was an amazing child, who happened to have some special-needs. Although many of my wonderful child's disabilities turned out to be terrible misdiagnosis - he does not have Cortical Visual Impairment of the first order, but mostly seems to have suffered from vision delays due to the fact that his extreme GERD meant that he was on his back almost all the time and his optic section of the brain was compressed by his flattened skull. When we brought him home, we increased his protein and calorie intakes significantly and the resulting growth spurt decompressed the back of his brain. Now, while he stills has his bad sight days, his principle problems are the stroke he had at birth, which means that his little left foot is constantly on point, his GERD, which resulted in a fear of food and means that he is only now learning to chew at age 5 (but he is such a trooper and tries so hard, even if you can see that he is kind of scared of choking!), and the fact that he has profound hearing loss. (Being born at 25 weeks and weighing in at 700 grams will make life a little harder.) However, he is an amazing and incredible child. I am profoundly grateful and blessed to be his mother. He is the greatest blessing of my life and, while everyone thought we were crazy to start with our family with a special-needs child, I believe that society has it all wrong about these kids. Kids are not commodities or some success goal. Kids are the opportunity to love beyond anything we imagined possible and our special-needs kids both return that love in a way that leaves me absolutely humbled. I am a Christian Catholic, so that affects the way that I view everything, but, when my son loves me and forgives me for failing to be Mom of the Year, he offers me a direct glimpse into the generosity of God. My son loves me unconditionally and it is humbling to have such a tiny, and often mischievous, little boy offer me the help and example I need to get up from my fall, ask forgiveness and try again. People ask me how I survive as a special-needs adoptive mom and I tell them that what they're seeing isn't surviving, it's thriving and I wouldn't change my life for the world!

(I am also a special-needs, foster-care adoption advocate and I believe that 300,000 plus kids in care, waiting for families to call their own, is a tragedy that must not be ignored!)

Just A Little Reminder

Sometimes words and actions can be hurtful. Being the grandmother of a beautiful little girl who just happens to have C.P. I am reminded everyday how words can be hurtful, more often than not these words are not meant to be offensive, or hurtful, it is simply the lack of understanding.

So I thought I would just subtly remind people to choose their words a bit more carefully. I can’t tell you how many times in a week, Hailey comes up in conversation (well, hundreds of times actually, after all I am a proud Grammy). Very often when I happen to see or hear from someone that I haven’t heard from in years or perhaps it just comes up in general conversation that Hailey has C.P. It never fails, the dreadful words slip off their tongue effortlessly and without much thought “...Oh, i’m so sorry, that must be so difficult, is this something that she will grow out of” or how about this one...she will never have a good quality of life. Though I am well aware that her quality of life will be compromised, the reminder is unnecessary and I chose to focus on challenging her everyday and promoting her independence. These are the kinds of things that will benefit her best. I’ve heard people say that people with C.P. and other disabilities are not normal, and I can’t help but wonder who decides what “normal” is.

As defined in Wikipedia... In behavior, normal refers to a lack of significant deviation from the average. The phrase "not normal" is often applied in a negative sense (asserting that someone or some situation is improper, sick, etc.) Well, Hailey is not improper at all. Actually her actions happen to be more proper than the people who ask these silly questions or make these remarks without thinking them through. Now, don’t get me wrong, I am not saying that I didn’t do or say similar things before Hailey was born. I had no idea what to say or how to act around others who had a disability. But now I know better, and I want you to know better too.

Always be aware of the impact your words can have on others.Teach your children that it is o.k. to talk to people who have a disability, otherwise you are not only sending my child the wrong message, but your child as well. I think it is all in the education, it is the process by which society deliberately transmits its accumulated knowledge, skills and values from one generation to another, so please, pass it along.

Positive Exposure ~ Redefining Beauty

By WINNIE HU
Published: June 21, 2011

RIDGEWOOD, N.J. — Students at Ridgewood High School were shown photos of young people with genetic disorders — muscular dystrophy, albinism, port-wine stains — and told not to look away.

The Pearls Project show at Ridgewood High School in New Jersey features a range of student work. At the top is a photo of Rebecca, 21, whose experiences living with a rare joint disease inspired a student's poem.

Then, those studying philosophy wrote essays about the meaning of beauty. A ninth-grade biology class went beyond textbook definitions of Turner and Marfan syndromes, communicating with real people to see how they lived with their symptoms. And a dance class created a piece about people with disabilities, in which dancers broke away one by one to perform in isolation.

“It was kind of shocking, because you felt yourself judging right away,” said Madison Konner, 18, a senior in the philosophy and dance classes. “You say, ‘There’s a boy with a funny face, ha ha.’ But you find out later he can’t help it.”

The unusual lessons are part of a new effort, called the Pearls Project, to promote tolerance and empathy in a school culture where being different can mean social exile. Ridgewood teachers developed it this year in partnership with Positive Exposure, a nonprofit group in New York City founded by Rick Guidotti, a fashion photographer.




Mr. Guidotti, who has photographed supermodels like Cindy Crawford and Claudia Schiffer, began snapping pictures of children with genetic disorders in 1997. A year later, Life magazine published his photo essay on albinism, titled “Redefining Beauty.” His work with these subjects has also been displayed in galleries, medical schools and children’s hospitals, as well as at Harvard University and at the Smithsonian Institution’s National Museum of Natural History.

For the Pearls Project, Mr. Guidotti photographed 11 young people, each with a different disability. He also arranged for them to blog about their experiences and answer questions from the Ridgewood students. The subjects are identified only by their first names — Byron, Ashley, Rebecca, et al. — and come from various states.

“Genetic conditions are depicted as images of sickness and sorrow — it’s always a kid up against the wall in a doctor’s office,” Mr. Guidotti said. “The idea was to bring these gorgeous kids into a community that didn’t know them and create a more inclusive society. It’s our responsibility to steady our gaze to see beauty, and not look away because we’re told not to stare.”



This fall, the project will expand to at least five more high schools across the country, Mr. Guidotti said, underwritten by $130,000 from a fund-raiser hosted last month by Ralph Rucci, a fashion designer, and Ian Falconer, author of the popular children’s series “Olivia.”

The principal of Ridgewood High, John A. Lorenz, says the project teaches important lessons about tolerance as schools face an increase in bullying and serve more special-education students than ever. The 1,700-student high school started a separate special-education program in 2008 for students who were once sent out of district; it now serves 18 people. There is also a club that works with children with genetic and behavioral disorders to put on musical theater shows.

“This is what real learning is about,” Mr. Lorenz said. “It’s relevant, it’s meaningful and it’s fun. Not one student said, ‘I wish I didn’t have to do this.’ ”

Teachers created assignments requiring students to get to know the Pearls subjects — read their blogs, watch their videos — and to put themselves in their places. The students were encouraged to ask questions, which their teachers passed along via e-mail.

Amanda Muccio, 15, a ninth grader in a biology class, said she asked Ashley, also 15, whether she was embarrassed to meet boys because she had muscular dystrophy and used a wheelchair. Ashley replied no, that if boys saw only the wheelchair, that was their problem. “I’m so happy for her that she can be so confident in herself,” Amanda said. “I envy that.”

In philosophy class, students used the Pearls photos to start a full-scale discourse on what Kant, Hume and Nietzsche, among others, thought of beauty, then wrote papers about what they had learned. “The challenge in a class like philosophy is not so much the material but getting them to carry it into their lives,” said Patrick Bernardo, the teacher. “This was a natural fit. Almost from the beginning, they saw the relevance.”

Creative-writing students who had signed up to write about their own feelings found themselves trying to write poetry about strangers. “It kind of took me awhile to get into it,” acknowledged Tony Boniello, a senior. “Maybe subconsciously I didn’t want to give writing about someone else a chance.”

Then Tony started reading the musings of Rebecca, 21, a college student with arthrogryposis multiplex congenita, a rare condition that can cause joints to be stiff and crooked. He fashioned a poem out of the sights that she found most beautiful: a sunset, the ocean, dolphins, a rainbow, a person who takes time to interact with someone with a disability.

“I think it’s important to get out of your comfort zone,” Tony said. “There’s only so much you can learn about yourself.”

A version of this article appeared in print on June 22, 2011, on page A18 of the New York Times, New York edition with the headline: Learning Empathy by Looking Beyond Disabilities.

Not Acceptable R-Word PSA

This PSA aired only a few hours ago, and already it has undergone significant scrutiny. The criticisms I've heard/read include that the slurs used at the beginning are outdated and/or too offensive to even be used. However, I think that is exactly the point.... those words ARE offensive and that's WHY they became a thing of the past. That's exactly the message the special needs community is trying to send about the R-word. It is offensive. It is not acceptable. It HAS to become a thing of the past.



Have you had any experiences trying to spread the word that the "R" word is unacceptable? I've asked people I interact with to stop using it when when I've heard them say it (usually in reference to themselves). I try not to lecture or act offended, but explain that I know they didn't mean to offend and I understand that it's unfortunately a common saying. Then I go on to explain that since I've become Chloe's mom, I've come to understand what a cutting word that is and when used in jest, it is not funny but highly degrading. People always seem supportive and understanding when I bring it up, which is why it shocks me how often I hear them use it afterward. Do they forget? Do they think I'm being oversensitive? Do they just not care? Since I can't answer those questions definitively, I politely remind them again. And I will remind them again and again and again.... as many times as I have to. I may just send this video with a short personal message tomorrow, in another attempt to get the point across.

Share your experiences as well! And please continue to spread the word....

CUTE Medical ID Bracelets!

If your child has any sort of medical need, some type of medical alert is highly recommended. Thankfully, there are now CUTE medical alerts from Lauren's Hope! Here is just a sampling....

View their entire catalog on their website HERE.

Advocacy

Advocacy...


A word to strike fear in every special needs mom's heart.


Are we doing enough?


Did we gather enough donations?


Did we spread the word to as many people as we could?


That word alone keeps me from sleeping many nights.


I think as a mother to two wonderfully special children, the urge to "change the world" pulls strong.





It beckons me in my sleep. It haunts my dreams.


It drives my crazy.


Luckily, my new best friend, Kindle, has opened up more books regarding advocating for my children.


Unluckily, it leaves me feeling even more overwhelmed.


Our motto has always been to educate your own community. Start small. Spread the word.


It may sound easy cheesy, but then life happens.


As my children grow, I want them to be proud and strong. I want them to see the Ability in their disAbility. Its a lesson that is sometimes hard to teach even in our own home.


I find myself telling Autumn there is no way she can do something. Autumn keeps finding herself proving Mommy wrong.


Take today for instance:


Autumn has mastered her wheelchair. Next week we will order her very own and with any luck it will be just amazing!!!

(We are keeping the colors secret for now)


She can roll all through the living room and dining room. She has maneuvered herself into the hallway to go into her bedroom. The kitchen, however, presents a problem. The entryway into the kitchen has a "door seal" on it. Forgive myfeminine ways when speaking about anything involving construction. She has gotten so frustrated because she can't seem to get over that hump.


Today as I was washing dishes, she proceeded to try again. I continued to tell her she would not be able to get over the hump. She continued to scream and throw a fit. I decided to pick my battles on this one and continue to let her try.


As I was walking into the living room I heard her start rolling pretty fast. I turned around to see my sweet girly girl do a wheelie in order to get over the hump and into the kitchen!!


My first reaction~~~Wooohoooo!!!! Look what she can do!!!

My second reaction~~~~Oh no, now she can get into the kitchen!


After clapping for herself ever-so-proudly she rolled right into the laundry room and started removing the clothes from the hamper and throwing them on the floor.


Mommy's little helper.





In that moment, though, I realized that sometimes I am too quick to give up and not get over the "hump." I get discouraged and outraged. I preach on my soap box from my very own porch.



And then my voice goes quiet. I am terrified of ridicule or scrutiny.



My children deserve so much better.



So here, in the middle of the night, by the light of my laptop I am choosing to spread the word.

"Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world...would do this, it would change the earth. "
— William Faulkner

Close to Home

April is Autism Awareness month.
Go here or here to find out about this month's events and how you can get involved.