Different iz Good in Phoenix Arizona

Different iz Good in Phoenix, Arizona too!! Go Eric Schaefer Go!! Go Lucas Schaefer Go!! AND Go Nora Schaefer Go!!

(Article published in Jewish News of Greater Phoenix Online – May 11, 2012)

Simchat Shabbat brings joy to families
Service geared toward individuals with special needs

…… Nearly six years ago, our son Lucas was diagnosed with a rare chromosomal disorder called chromosome 18p deletion syndrome. The doctor that gave us the bleak diagnosis knew little about his syndrome - she handed my wife and me a page from a medical journal and said, “Lucas will probably never walk or talk, and it’s likely that he’ll die young.” …. Read more from the original article

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Being Different Inspires Others

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(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly) We searched for Rodeo Championship BBQ Cook-Off booth numbers 913 and 915 where a rodeo dance was being hosted for a camp in which Samantha participates. The area outside of the … Continue reading

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Thoughts from a Momentary Perspective

(Guest post by Sara Jackson Johnson -  Sara blogs at Sara in Between)

Sara Jackson and her Family

I’ve been struggling with some genetic results I received this week for my youngest, which told us that in fact he has two rather than just the one extremely rare genetic disorder. I’m pretty sure this takes him from one in few thousand to one perhaps on his own and while that’s kind of cool, it’s also quite lonely from where I’m sitting, not yet with the head space to learn the new stuff.

So I’ve done some hibernating, ruminating and finally blog-style tantruming and now I’m quietly trying to calm my feelings.

What has helped is catching up on an amazing TV programme shown here in England on BBC1. It was about surgeons at the Oxford Craniofacial Unit who use their skill to operate on children with disorders, malformations and life-threatening conditions affecting their skulls and faces.

These amazing professionals are leaders in their field, with extraordinary skills and techniques and the stamina to perform 7 hour operations. They are artists in helping to break and reform bones in the skull to allow room for brains, to help attach muscles to allow a smile reflex, to perform an extraordinary operation, then attach a brace and turn it a milimetre a day to gradually change the shape of a head and reduce pressure in the brain. What they do in these operations somehow didn’t seem gruesome, because of the humanity with which they held themselves, and the effect is nothing short of miraculous.
What is amazing is that they carry out their duties with an amazing humility and kindness, knowing that what they are doing is saving lives, but also helping people to look less different. To feel less obvious and blend a little more and as such have a slightly easier time of life.

What really struck me was something that the one of the surgeons said and understood about his patients. That parents struggle with these huge decisions while their children are young and have no choice when things are life threatening. But at some point these children become older and often decide that enough is enough. After countless operations the danger is over and only the cosmetic remains which is why some of them arrive at the conclusion that they are who they are. Job done.

I watched with admiration and tears at the humanity of these surgeons, the strength and pain of the parents and the amazing resilience of these kids.

Still days after I’ve watched them I’m carrying around the lessons that they didn’t know they were teaching me when they agreed to be filmed by for once what appeared to be an emotionally intelligent TV crew.

Difference and all it embodies is often far too complicated to put into words, but today to help me concentrate on renewing my perspective, I’ve enjoyed looking around the edges.

{Did you enjoy this post? Feel free to “like” it below and share with your Facebook Friends by pressing here! Thanks y’all -Camilla}

About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

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Just a little girl

(Guest post by Alisha Marie Peters – Alisha blogs at The Moments That Change Everything)

I know this blog’s mission is to empower difference, which I am all for… but at the same time; I’m starting to see that my girl is so much like any other 3-year-old girl in so many ways.

Don’t get me wrong, she is different in a lot of ways, but the beauty is, I don’t think she sees that yet. And just this once, I’m not going to focus on what makes her different, even though I love all of her. I’m so proud of who she is and all that she’s accomplished with so much stacked against her, and I really hope she grows up knowing that. And that she embraces who she is, all of who she is, and knows how truly amazing she really is.

But, this time I want to let the world know that in most aspects, my girl is just like yours.

But really, just in the last little while I’ve seen enormous strides in her development, and I’m seeing just a 3 year old girl… just that, a little girl doing things that all little girls do. She hates having her hair done. She loves her independence. She loves school and all her friends there. She is a daddy’s girl through and through. She loves dolls and Minnie Mouse. She laughs at things that are funny, some that I’m even surprised she gets! She loves attention, but at the same time can be really shy until she really gets to know someone. She doesn’t really care for goodbyes. She can throw some amazing diva-esc temper tantrums over not getting her way! And she has an attitude that is much bigger than she is!

And the thing that inspired this whole post, she loves… and I can’t stress that word enough, loves Tangled!! She got it for Easter, and I’m sure has watched it entirely through over 20 times in that short week and a half. She loves the whole thing, but definitely has her favorite parts and songs. Now you may not understand why I think this is such a big thing, or why I’m happy about it. But you see this is something that I thought would never happen for my little girl. I would hear people complain about having to watch this show or that over and over, and secretly I would think how lucky they were that their child had made such an important connection. And I’ll admit that I wasn’t sure if mine ever would.

So yes, I’m “Tangled out” I guess you could say, but I’m so, so happy…. Ecstatic really. I love that she is just a girl some days. She’s a happy, always smiling, wanting her way kind of girl. Didn’t I just describe every 3-year-old diva in America??

Em laying on her butterfly pillow with her favorite doll, watching Tangled

{Like this post? Feel free to “like” it below and share with your Facebook Friends by pressing here! Thanks y’all -Camilla}

About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

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It’s the Little Things

(Guest post by Geri Kochis – Geri blogs at EmilyAnn)

As a warning – This post is my own opinion and I apologize upfront if I offend anyone.

In the Geri dictionary, Cheerleader would have had following description: cliquish, flexible (body), high energy, lot’s of makeup, crazy parents, revealing clothing, and popular (kids/teen/adults).

Emily joined a special needs Cheerleading squad in October/November of 2010 (Idaho Cheer Spirit). This was a competition squad, so they did more than just practice. I wasn’t sure how it would turn out and really concerned she wouldn’t perform well enough. The kids not on the special needs squad also worried me. Most of children (even adults) don’t know how to react to Emily. It is not uncommon for her to walk up to strangers and say she likes their shirt or shoes, or just say random things. To make it worse, Emily has bi-lateral hearing loss along with 18p- so her speech can be hard to understand at times. The response to Emily is usually, umm.. ok and then a confused look directed at me. I didn’t think Emily would fit in with her traits combined with my thoughts on Cheerleading. Here were are 5 months out and a National Championship later and I can admit I was wrong about everything.

Not only did Emily’s squad welcome her with open arms, but so did the entire gym (Idaho Cheer). No one cared that she would say random things, or sometimes get distracted by the other squads tumbling. The promoters/producers of the competitions made the squad feel special and they always received at least medals. The support from all the parents (different gyms, states) at the competitions was great. I can’t think of once where the entire crowd wasn’t cheering for our girls. The spirit squad had great coaches that always encouraged the girls to do their best without discouraging.

Idaho Spirit has had junior coaches. These coaches were girls from another squad with an age range of 11-15 (maybe a little order/younger). I have never in my life encountered girls that age who were so accepting of differences and truly cared about the girls. The parents of these girls should be proud.

This past weekend Idaho Cheer Spirit earned the title of National Champions (along with 4 other special needs teams) in Anaheim California. Cheerleading has made such a difference in Emily, and me as well. The Geri dictionary has definitely changed.

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Acceptance of Different

(Guest post by Susan Moran –Learn more about Susan by visiting our Contributors Page)

There are many things to accept in this world. We must accept different people, different cultures, different religions, different points of view, different methods of accomplishing tasks, different schedules, expectations, rules, directions, likes and dislikes and the list goes on and on and on.

In our house, one darling really needs help with accepting different expectations and different methods of accomplishing tasks. She likes sameness—it is comforting to know how and when things will be done. However, as stated above, this is NOT how life really works. So, I am challenged daily to help her embrace and enjoy flexibility. :) To this end, I made up a song/chant with her in the car the other day.

I wrote a song to help IM deal with adjusting her evening schedule to include sitter time. She loves her sitter but still struggles with differences in routines and how things are done. All things should be done Momma’s way, don’t you know?! :) So, here it is.

Izzy’s way, Izzy’s way
I like to do it Izzy’s way
Sometimes it’s dif-fer-ent,
But that’s O. K.,
I LIKE to do it Izzy’s way.

We also talk about how this song can help at school, at PT, at doctor’s appts, where ever things are different—we can sing this song and make it a good day. :) It helped that night and another night too. :)

I bet you know some one who could use flexibility training too. :)

What will you do today to embrace, celebrate or help some one with differences?

(We would love to hear your thoughts in the Comment section and if you’d like to share with your friends on Facebook, just press here! – Thanks y’all -Camilla!)

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My Kid Rides the Short Bus

(Guest post by Loni Scovill Smith -  Loni blogs at His Apraxia Journey)

Why Different iz Good Exists!

When I was growing up in the 80’s and 90’s, there was a stigma attached to kids that rode the “short bus”.  I believe most of it stemmed from ignorance and fear.  Back in those days, when you saw the short bus, you imagined it was filled with kids afflicted with the worst of the worst disabilities.

My son rides the short bus. And he isn’t afflicted with the worst of the worst. In every way physically, he seems normal. He looks and acts like any other five year old in preschool. He’s social, fun, smart, stubborn, but very different in one specific way – his speech is unintelligible.

I am a mother in the age of the internet, a time when information is at everyone’s fingertips. I live in a decade where we can stay connected with others virtually; I have easy, accessible ways to pass on information to others about my son’s condition. Whether it’s through Facebook posts, my blog – His Apraxia Journey, or even this Different Iz Good blog, people can learn about Ian’s speech apraxia and having that knowledge eliminates the fear or ignorance that they might have been experiencing. That’s pretty darn cool.

Because of social networking and the plethora of information readily available at our computers, the doors of acceptance have been opened wider than ever before to our children with disabilities. Knowledge is beautiful.

As I prepare my son for the probability of attending a special education kindergarten in the fall (complete with another year of riding the short bus), I revel in the fact that he is loved and accepted by all of those around us. There is not a horrible stigma or fear and ridicule attached to him, rather, there is joy with each new word he speaks clearly, there is celebration for the success he finds in the special help he receives. There is compassion.

My kid rides the short bus and everyone celebrates his differences. Being different is no longer scary, it’s acceptable. It’s understandable. It’s beautiful.

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