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

Samantha Enjoys Christmas in a Different Way

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

Samantha is running back and forth in the front hallway. She is flapping her arms and giggling. I watch, smile and walk into the kitchen to prepare breakfast. Suddenly, I hear bells jingling on the Christmas tree. I look over and see the top of the tree moving from side to side. I stop what I am doing and walk over to the family room to see what Sam is up to. Is she pulling an ornament off of the tree? Trying to sit on or tackle the tree? I enter the room. She is wearing her pink and gray leopard print gown. Her hair is messy but it is pulled back into a ponytail. She is sitting quietly in front of the tree, admiring the lights and trinkets. I know she was probably trying to sit on the tree but all is good. She is safe and happy and that is all that matters.

John and I carefully purchased a new tree this year because Sam had mangled the old tree. After 4 years of being leaned on, sat on and knocked over, half of the lights were no longer operating and the bottom branches were touching the floor. It only took one day before this new tree began to look like the old one, except this one has the multicolored lights instead of the clear ones. John and I figured Sam would enjoy the different colors.

The truth is that Sam doesn’t understand Christmas or any other holiday. She is usually quite easygoing but will run and look for a quiet place to hide if there are too many people around. She will refuse to eat in a large social environment, even if she is at home. For this reason, we miss out on many extended family gatherings. If we do attend, John and/or I have to chase Sam around to make sure she doesn’t grab and eat dirt from houseplants, play with toilet water, break something or go into meltdown mode. I then find myself explaining her behavior(s) to family and/or friends. Though I do not mind educating others about Sam, the ‘chasing around’ and meltdowns are not fun and the only solution to this type stress and chaos is to have holiday events at our own home where Sam can feel safe and disappear into her room if she feels the need to do so.

Sam is sweet, smart, funny and craves her routine. She recognizes that many things are different this time of year so we continue to follow a routine throughout the holidays. I know it sounds dull and boring but John and I must do what is beneficial for Sam. When change does occur we do our best to get her through it successfully. Since Sam is nonverbal and still does not understand how to use communication devices, I often wonder what goes on in her mind. How does she feel? What is she thinking? Is she afraid? I am not sure if these are things I will ever truly know but I have much faith and hope and continue to work with her daily.

For the time being, I know she likes Christmas trees, lights and ornaments. She picks one ornament off of our tree each time she passes and by the end of the night several ornaments are scattered throughout the house and I find myself picking up the same ones every night. I also know that she doesn’t care about presents and never demands anything (except her baths or snacks). It can take several days after Christmas before she is interested in opening a single gift. Tissue paper, bows, tulle, wrapping paper, gift bags are often more interesting than the gifts themselves and this is okay. As long as I see a smile on Sam’s face I know she is content. This is Sam. She is easy to please and John and I are blessed.

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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.

Different is…

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

Different is…

Different is the loooooooooooooooooong pause after you answer the question, “How old is she?”

Different is the questioning the new doctors have over why this “normal” child is on a liquid diet instead of table food.

Different is checking your schedule for doctor and therapists appointments before you plan a play-date.

Different is your darling explaining orthotics to her friends.

Different is the questions from the school-mates as to why she is acting like THAT.

Different is explaining “words” like IEP and GERD to your friends.

Different is saying; “Sissy, you are sweet I could pour you on my pancakes.”

Different is blowing Daddy hugs so hard he almost falls over.

Different is singing no matter where we are or who is watching.

Different is getting up and dancing in the restaurant when the Latin music moves you.

Different is chatting to the birds and animals on the walk and not noticing or caring who sees.

Different is saying my name is. What is your name? May I have a hug now?

Different is the one more hug, Mommy before you go.

Written by Susan Moran

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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.

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!

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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.

Different is Love

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

(©2009 Artwork by Lillian Darnell - All Rights Reserved)

Different is Love

Different is learning love is like a rainbow:

Full of colors and joy-
Full of experiences that upon memory are as colorful as a rainbow,
Full of expectations that upon collaboration are as colorful as a rainbow;
even though the collaboration changes the expectations beyond imagining sometimes,
Full of joy for all of the differences that no one could have predicted and yes, these joys are as colorful as a rainbow.
Different is learning love is like a rainbow, very colorful and full of mystery and joy.

Kaleidoscope

My journey with my darling daughter is like a kaleidoscope. It is a mixture of emotions at levels never before experienced or even imagined. She has taught me that love is joy. Different levels of joy and excitement over “small” things that others take for granted.

These joys occur on HER time table, not on the schedule from some developmental chart or some doctor or teacher’s notion of when is “right” for it to occur.

Love is those first independent steps that we had to wait an “extra year and a few months” for her to take.

Love is the pride that beams from every fiber of her being and through her soul when she “gets it” whatever the latest it is!

Love is the sheer, pure joy when my darling finally, after years of trying, jumps over that yellow bar at PT.

Love is knowing when to whoop and holler at her success and when to celebrate quietly so as not to interrupt the moment for her.

This kaleidoscope love of mine is wonderful. It is so full of color that changes and mixes and is constantly in flux.

I am blessed to have a kaleidoscope love child. Are you?

{Wanna share this with your Facebook Friends? Feel free to “like” it below and share with them 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.

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}

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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.

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

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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.

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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