Flexibility Training Led to Different iz Good

We love acknowledging those that Get Involved with the Different iz Good movement and the Turning Views Foundation ~ And, this one’s a biggie! The slogan Different iz Good . . . Spread the Word may never have existed but for the comments of a fellow Chromsome 18 Mom. In 2008 we were discussing how our beautiful special needs kiddos do not like change and changes in their schedule or routine that cause things to seem different. Susan Moran commented that they really stress in their house that different is good and show it by changing furniture around often and other methods. My eyes, heart and soul wrapped around those words and with Susan’s permission I tucked it away to “incubate” until the timing was right! You are a beautiful rockin Mom Susan! Here’s an explanation straight from Susan herself -

“Different is Good is a comment that is spoken in our house about every other sentence. It started as flexibility training for my darling IM who does NOT like change in schedule, routine, activity, etc… We sing and dance and chant, different is good, who can handle it? Then, the idea morphed into all differences are good…different people, people with differences. Wow, it is really going somewhere.”

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

Most Popular Posts for 2011

Spent some time today combing through our 2011 posts to put together a “most popular” list for our new visitors and frequent visitors alike in case you missed something or want to share a great article with a friend. I wanted to include ALL of them as I think ALL of them are awesome and inspiring posts. I took a look at how many comments and facebook likes each post received. So here ya go – Most Popular Different iz Good posts for 2011!

Different iz Just Fine – January 7, 2011

Giving Sam a Voice – February 7, 2011

Symbiosis – February 9, 2011

My Kid Rides the Short Bus – February 16, 2011

It’s the Little Things – April 18, 2011

A Poem for Special Teachers! – April 27, 2011

Just a Little Girl – May 9, 2011

Different is Love – May 24, 2011

Showers, Escalators and Airport Toilets, Oh My! – September 13, 2011

Different is . . . – December 12, 2011

Samantha Enjoys Christmas in a Different Way – December 20, 2011

Showers, Escalators and Airport Toilets Oh My!

(Guest post by Camilla Downs -  Camilla blogs at CamillaDowns.com)

In July 2011 Lillian and I attended the Chromosome 18 Conference in Indianapolis, Indiana and thought I’d share some of our adventures with y’all!

We had an absolutely beautiful and fun time on our trip together.  Airports are a challenge for us as Lillian has worries and fears and depth perception and balance issues.  So we aren’t going anywhere fast when we are in an airport.  That Mama you see with a frightened looking 9 year old that has a death grip onto said Mama’s arm, hand or any body part she can grab a hold of {sometimes painfully} . . . that’s us!!  Lillian did a fantastic job going through security here in Reno.  It wasn’t crowded and we didn’t feel rushed.  Heck, she even had a ball when she beeped going through the scanner and Mama had to be searched and patted down.  Mama was just so darn happy to get the privilege of having a little ole body massage that early in the morning and at the airport . . . who woulda thought.  My only complaint is that the pat down {aka body massage} didn’t last nearly long enough!

It completely escaped my thought process when reserving our hotel room to ensure the room had a bathtub.  Showers are a “not happening” zone for Lillian.  Ain’t no way she’s getting into a shower!!  I was pretty pooped after finally making it to Indy and we actually had a VERY fabulous corner room with an awesome view . . . I did not want to mess with changing our room.  So, let’s just say that’s the longest Ms. Lillian Darnell has gone without having a bath!!  She did go swimming while she was there and I wiped her down with a wash cloth . . . in my world that’s darn good nuff!!

Our Chromosome 18 events were on the 2nd and 3rd floors.  There were escalators between the 1st, 2nd and 3rd floors.  Another “not happening” zone with this little lady.  I don’t know how many of you have attended conferences in big hotels; but one thing is for sure . . . the elevators move slow as molasses {especially at this one due to one elevator being serviced the entire time}!  I could not talk Lillian into getting on that big bad scary moving stairway thingy just for one little ole floor.  So, off we went to wait for the elevators to ride for one floor move.  I know, I know, you’re thinking why didn’t ya just use the stairs.  Some stairs are okay with Lillian . . . just a few stairs . . . that’s okay.  Stairs inside of a building or even outside like a library are okay.  But, definitely not those industrial stairwells inside of big buildings, you know, the kind that echo and seem to go on forever.

What long trip with our kids with special needs would be complete without mentioning airport toilets?  These have got to be one of the scariest inventions EVER for some of our kids! Hahahaha! Thanks to another awesome, beautiful and wisdom filled Chromosome 18 Mama, we have conquered those darn scary thrones of airport-dom! A few years ago at one of our conferences Shelley Hunt, Mom to Becky and Sarah Hunt, shared with us that she always had post notes in her purse.  She used said post it notes to cover those annoying little sensors so the toilets would not flush unexpectedly.  Lillian felt the need to use the bathroom while we were waiting at the Dallas airport for our connecting flight back to Reno.  We got in the bathroom and she started saying never mind, I don’t need to go. My mind sprung into action . . . “What was that little trick Shelley shared? Oh yes, post it notes.  Oh Lord, do I have any?”.  So I began to search our bag and my purse for one of those magical post it notes.  I finally found one, and only one, marking a page in the book I was reading.  I had just discovered a treasure!!  So Ms. Lillian used that darn airport toilet and we left that bathroom with our heads held high knowing we had conquered that scary flushing white throne!

Showers, escalators and airport toilets . . . oh yes . . . quit the adventure! Seriously, I think y’all can tell I like to have a sense of humor about all this jazz.  That’s me . . . that’s the way I process, I choose to see the humor cause I just don’t care for the alternative.  What do y’all think?

“A sense of humor… is needed armor. Joy in one’s heart and some laughter on one’s lips is a sign that the person down deep has a pretty good grasp of life.” -Hugh Sidey

If you’d like to see more pictures of our Chromosome 18 Conference adventures go here y’all!

{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.

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.

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}

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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.

A Poem for Special Teachers!

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

Sam and One of Her Awesome Special Ed Teachers

Teacher Appreciation Week is around the corner. Though I believe ALL teachers are invaluable, I am giving extra props to special education teachers. Surprise, surprise! :)

They aren’t just teachers. They are physical therapists, speech therapists, occupational therapists, researchers, nurses, and our children’s cheerleaders! Their patience, creativity, organization, ability to accept and understand the differences in each of our children and their ability to motivate, identify, appreciate and celebrate small victories are what make them different from the rest! Few things are more rewarding than knowing you have made an impact on the lives of children who are struggling to reach their full potential.

Two years ago I wrote this poem for Sam’s LIFE Skills teacher and paraprofessionals, printed it, framed it and gave it to them as a gift. It was written from Samantha’s perspective. I hope you like it:

You greet me every morning with a great big smile
Help me out of the car
Even if it takes a while

I am a little girl who cannot hear or speak
But still you understand me,
Week after week.

I have more challenges than most other people, you know
But you never give up on me
Even if my progress is slow

You help me with my daily life skills
Help me to succeed
Teach me how to sing and play
Adapt it to my special needs

I am strong and happy
I like to giggle and tease
Sometimes I may even drop down on my knees

You work very hard everyday,
Help me learn and grow
You are patient, kind and loving

This I wanted you to know
It takes a special person to be a teacher like you
And my Mommy and Daddy are grateful
For everything you do!

Happy Teacher’s Appreciation Week!

{If you loved this as much as I (Camilla) did and want to share with your Facebook Friends, just go here to do that!! Thanks y’all!}

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.

The Good

(Guest post by Andy Flowe – Andy  blogs at Go With the Flowe)

Andy and Sammie

Eventually, I intend to write about the downsides of growing up with a sibling with special needs (although they usually turn out to be upsides as well, at least in the mind of this unapologetically  idealistic college student).  But first, I want to get a little corny.  Every year, my family packs our bags and heads out to the annual Chromosome 18 conference.  We’ve been to over 15 conferences, held everywhere from San Antonio (the home of the Chromosome 18 Registry) and Plymouth, Massachusetts to Anaheim, California and everywhere in between.   We’ve turned it into our annual family vacation, and we all look forward to seeing our second family at the conference every summer.

The thing that I personally enjoy the most at the conferences has been all of the other siblings I’ve met.  It’s really helpful to talk with others who have experienced the same struggles and joys of living with a sibling with special needs.  We usually find a room away from the prying eyes and ears of parents and sibs, and swap stories, be they about how hilarious, sad, frustrating or just plain annoying our siblings can be.  At the 2007 conference in Plymouth, I guiltily admitted to the other sibs that I had milked up the relationship I had with my sister for a recent college application essay.  My admission was met by almost unanimous laughter from the older siblings, and when the laughter died down they all cheerfully admitted that they too, had played up the “I have a disabled sibling” card in their college applications.  “But,” one friend assured me, “It’s okay, because its all true!”  And I realized that despite how cheesy the essay sounded, it was, for the most part, true.  So without further adieu, I present to you the corny, unedited version of the essay that got me into college four years ago.  Enjoy:

My sister has been and always will be the single most important person in my life. Sammie is 20 years old and she supposedly “suffers” from Tetrasomy 18p, but I’d argue that she’s never suffered a day in her life. Tetrasomy 18p is a rare chromosomal abnormality that causes both behavioral and mental impediments, and Sammie is the happiest, most loving, generous, caring person I know. My mom recently asked me “When did you realize that Sammie was different?” I thought about it for a second, then I thought about it again, and I finally realized that I never thought that Sammie was different, she was just Sammie. There’s nobody like her in the world, and I could not be blessed with a better big sister.  In middle school, my dad and I would get into shouting matches roughly once a week over some trivial thing and we’d have to stop and figure things out when we looked over to find Sammie bawling her eyes out, tortured by our fighting.  My dad and I would each give her a hug and talk to her until she felt better, assuring her that we still loved each other.  Whenever my mom or dad would come home with a new boyfriend or girlfriend, the standard of judgment was always Sammie. If Sammie liked my dad’s new girlfriend, then we all liked my dad’s new girlfriend. She was able to weed out the bad matches and my parents made several romantic decisions based on Sammie. At times, I was jealous that Sammie received more attention than me because of her disability, but I always found myself back in Sammie’s room with her arms around me assuring me that she would always love me. I was invincible within those arms.

Andy and Sammie

I’d like to think my writing has grown a bit since writing this, and the corniness of  it (especially the last line) totally makes me cringe, but I still stand by the substance of it.  At the last few Chromosome 18 conferences, we’ve held a “Sibling Panel“, where a bunch of us siblings get up in front of parents and answer questions about what its like to live with a sibling with special needs.  This past year, after the panel was over, a few parents came up to me to talk, and one told me “Gosh, Sammie is just so lucky to have a brother like you.”  The compliment came as a surprise, and it was definitely flattering, but I found myself feeling a little disappointed that I hadn’t completely gotten my message across.  If there is only one thing that I can teach others about growing up with a special needs sibling, it’s this:  Sammie isn’t the lucky one, I am the lucky one, and there is absolutely no way I would be the person I was today if it wasn’t for her. She pushes me to be a better version of myself every single day, and all she asks for in return is some love.  And I’d like to think that if everyone had a Sammie in their lives, the world would be a whole lot better place.

(Is this an article you’d like to share with your Facebook Friends – Go Here to do that – And Thanks Y’all – Camilla)

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!)

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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