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

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!)

Listening with my Eyes and Ears

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

Sam grabs my hand and walks me to the door that leads to our garage. This means she wants to go for a ride in the car. She usually grabs my purse, slings it over her shoulder, or cross body, and walks over to me. Today she communicated differently but I got the message.

After the hustle and bustle of Christmas shopping, visiting family, having family visit and being totally out of her structure, element and routine I believe Sam deserved to have some normalcy. She didn’t feel well on Christmas night and she is feeling the same today. She is congested and has what John and I usually call a “smoker’s cough” so I placed her in her car seat and we went for a drive… to nowhere. Actually we drove around the quieter streets of our Katy community, where it is calm and the trees are big and pretty. Sam didn’t mind.

As I drove, I had the car stereo on and it was probably louder than it needed to be but I love listening to music and Sam could feel the vibration of the bass from the speakers. I take a glimpse in the rearview mirror and see her beauty instantly. She is wearing a pink, holiday shirt with a peace sign on it, which she received as a gift for Christmas. Her hair is all pulled back into a ponytail with a big, pink bow and a curly lock of hair hangs on the right side of her forehead. She has an enormous grin on her face and she is kicking her right foot with much delight. I thought to myself, “She sure is pretty in pink and very happy.” I couldn’t help but smile.

Sam has never called my name or said Mommy and I am not always sure she understands what I say or do but I keep holding her and talking, reading, signing and singing to her and I encourage others to do the same. That’s all that matters. Sam smiles, giggles and cries. She thinks and observes and is a pretty amazing problem solver. When she takes my hand and walks me to the door that leads to garage, or walks me to the kitchen, bathroom, or even hands me a book or a toy, I know what she is saying. This month she has been giving big hugs and making more eye contact. Sam is communicating without speech.

Do I wish she could speak? Would I love to hear her beautiful voice? You bet! For now, I get giggles, babbles, cries and gestures and if this is all I ever receive as far as communication, I can be happy. It is more than many doctors ever expected. This is Sam’s language and I am always listening with my eyes and ears.

I Have a Dream

(This post contributed by Camilla Downs – Camilla blogs at CamillaDowns.com)

“Whatever you dream you can do, begin it.  Boldness has genius, power and magic in it. Begin it now.” – Goethe

I have a dream of  a world where amazing people like my daughter Lillian Darnell, people who have intellectual disabilities, genetic differences, chromosome abnormalities, and the like are NOT pigeonholed into jobs performing mundane tasks that don’t reveal and let shine their uniqueness.  Jobs that do not give them the opportunity to share their unique and different view of the world.

I have a dream of a world where those closest to these magnificent people and those who are entrusted to educate them shift their paradigm.  A world in which we become aware of NOT what they can’t do or what they are doing wrong or different.  A world where educators don’t attempt to make them fit into a cookie cutter system that is so archaic even “typical” kids don’t fit in.  A world where we open our eyes and discover what they CAN DO, what they are GOOD at doing and what they LIKE to do.  A world where we notice what excites them, what fuels their passions.  A world where WE take the initiative to mentor them to cultivate this, shape and mold it into a way for them to earn a living for themselves and not have to rely on a minimum wage job and an SSI check.  Whether that be working for someone else OR . . . being an entrepreneur.  A world in which we, and they, don’t feel guilty or wrong about using their differences to their advantage in their life.

“Each of us has a Different gift that lies within us.  Some amongst us just need a little extra help in discovering that gift and sharing it for the benefit of the world. ” Camilla

My part in this dream is to do whatever I can to give these awesome people and their families the tools, information and resources to further their dream and mine. To continue and further my efforts with Turning Views Foundation to be a nonprofit that truly helps to mentor and guide these amazing individuals in discovering their talents and gifts, reach goals and to have a career doing what they love to do OR become an entrepreneur and do what they love!  The Foundation wants to do everything it can to give them a voice in their own future.

Do you feel strongly about this dream?  Want to learn how you can help further this dream? Want to be a part of the Different iz Good Movement? Visit Here! Thanks y’all for your support and encouragement! With your help Turning Views Foundation will make the lives of others better, empower others to do things they never dreamed they would do and will give a voice to those without one!

I have a dream . . . what’s your dream?  Please share your dream with us!

Musings

I’ve been thinking about what my first post for this site should be and have thunk my way right here.

I’m Sara, mum to two wonderful boys, my youngest having 18p deletion, a rare genetic disorder.  Where my little man and some of his other 18p buddies differ, is that (at the moment at least) he sneaks under the radar.  He walks, he talks, he looks like everyone else…so really he doesn’t seem to be different at all and he doesn’t have many of the negative effects that looking and sounding different can bring to a person.

Sara Jackson and her Family

What I have found out though, is that when you have a child who has a diagnosis, but on the surface seems to be the same as everyone else, the negative connotations about being different are still there, and still applied to him, but in a well meaning and topsy turvey way.

I’ve lost count of the people who’ve said “but he looks just like everyone else” or “you would never know there’s anything wrong” or “they met him and didn’t even know there was anything different”.

It’s always said in a way that I absolutely know is meant to make me feel good and I have realised it’s a very complex thing as to why it doesn’t have the desired effect.  What makes me feel worse about my under the skin horror of these comments is that it’s often said by people I trust and love – people who teach him, know him, love him, love me…and it’s quite complicated why it bothers me.  So if you don’t mind, I’m trying to work it out as I type.

Firstly I think I bristle out of loyalty to everyone out there who isn’t the same as everyone else.  Because saying to me that my child is the same, to try to make me feel good, feels like a huge betrayal to all of them if I take it as it’s meant, as a compliment.

Secondly because it makes the assumption that it would affect me in any negative way if he wasn’t quite this lucky and typical.  Because that undermines the fierce love that I have for him, and would have in equal measure if he was blind, deaf, dysmorphic in his features, in a wheelchair, unintelligable in his speech and so on…

Thirdly it also undermines the things that go on behind the scenes of his “normal”.  Behind the curly hair and podgy cheeks and the sparkly eyes and magic smile and the seemingly uber-coping Mummy.  The immune system that can take us by surprise, the concentrated learning that is endemic in our daily routine, carried out as subterfuge to all involved.  The physio that also slips into that routine, the constant checkups, the worry about all the things that his magic genetic makeup can and will bring to us and the fear of everything I know.

Fourthly because if I allow myself, or anyone else to deny that he is different, rather than empower them through him to respond effectively to “different”, I am not doing what I was put here to do.  And I won’t be doing myself or him, or indeed them any favours at all.

Me and my boy are who and how we are for a reason.  I have always told him and anyone else who’ll listen that he isn’t the same as everyone else, but woe betide anyone who treats him as if he is.   Like it or not, our society is full of cruelty behind all the quiet good intentions of the good people who float within it.  People are squeamish about disability, about things they don’t understand and indeed fear in the depth of their souls for themselves and their families.

So if my little boy right now can be a poster child for people who need help dipping their toe into the water of tolerance and understanding around disability, then I’ll take that as a clear wonderful mission for us, while he’s still “typical” enough to do it.

But do me  a favour, spread the word for anyone working or living in the London area.  Watch out for pointless platitudes spilling out of your mouth, supposedly to make a parent, or sibling, or grandparent feel better about their affected relation.

Because that recipient might be me

And I might not be feeling as kind as I am now

thanks for listening and see you here soon

Every Journey Must Have A Beginning

We didn’t find out until Emily was 6 that she might have a genetic disorder. I didn’t think it was possible, when I heard genetic disorder I think of Down Syndrome.  One of my aunts has Down Syndrome and I knew she didn’t have that.  We knew she was delayed and had been since birth and had various medical problems.  You don’t see many full term babies in the NICU for 63 days, on a vent, and had to have CPR in the delivery room.

The first genetic disorder she was tested for was VCFS (Velo-Cardio-Facial syndrome). We learned all we could while the FISH test came back.  Two weeks later we were negative for VCFS.

The developmental pediatrician thought a trip to the Geneticist was need.  He gave Emily a clinical diagnosis of William’s Syndrome during the appointment.  We were so happy to finally have a name for Emily’s collection on symptoms.  He ordered a blood test to confirm.  The blood test came back negative for the Williams Syndrome (she had both genes).  The Geneticist decided to keep the diagnosis until something better came along or more symptoms.  I was happy with William’s Syndrome, it was very well studied and I had a good idea of what we would be facing in the future.  It was about 6 months later and we knew it wasn’t William’s Syndrome and I was concerned about possible medical issues that weren’t explored because we didn’t know what was wrong.  I requested a referral to Primary Children’s in Salt Lake to get a second opinion.  That Dr. ordered a DNA microarray.  The 6 weeks to get the test back was awful because there was a very good chance it would show everything was normal.  The first words out of the geneticist mouth when we got “the call” was “The test did show a small deletion on one of her Chromosomes”.  I then held my breath while thinking please please don’t let it be a bunch of number.  He then went on to explain Emily has 18p- Syndrome and she was missing the top part of the p tip of Chromosome 18 (18p11.32 to be exact).  He went on to explain they don’t know a lot about but there is a website that can give me more information.  This was more heartbreaking to me than the confirmation of a genetic disorder.  My fear came true on that day, Emily has a genetic disorder that is “numbers” and they don’t know a lot about it.

This is my intro blog, so if I get around to posting more everyone will understand why Emily having a “bunch of number” for a genetic condition causes me more heartache then the condition itself.