At Special Olympics ceremony, Frankie Edgar finds a little perspective

by Ben Fowlkes from MMAJunkie.com:
Former UFC lightweight champ Frankie Edgar had personal reasons for attending the opening ceremony of the New Jersey Special Olympics Summer Games at The College of New Jersey in Ewing, N.J., at the end of May.
The 32-year-old Edgar has an aunt and a cousin with Down Syndrome, he said. His aunt competed in a version of the games as a younger woman, so he thought it’d be nice to show up and lend his support as a pro athlete from the Garden State.
What he didn’t expect was that he’d also get something out of it, something he could use now that he’s eight years into his pro career, and still trying to recapture the fire that made him a UFC champion once.
“Sports, it brings people together in so many different ways,” Edgar told MMAjunkie. “Just to see the smiles on the athletes’ faces as they’re walking out and getting cheered by the fans and their families, that was something really special.
“For me it is a job, something I have to do. I mean, I do enjoy it, but it does get a little tedious at times when you’re doing it every day, all day. To see people going and competing for the joy and for the sake of fun, it kind of reminds me that I get to do something for a living that people enjoy doing. Working out and participating in sports, it’s something people do for recreation, and for me it’s my life.”

Shifting the Perspective on Disabilities

by Christie Taylor from The Huffington Post:
If I was asked the question, "Was receiving the news your son had Down syndrome a life changer for you?" my answer would be yes, but that wouldn't be entirely accurate.
It's easy to look at a one big, notable experience and say that event changed my life. Yet, when I take some time to ponder my life changing moments, they are not big and notable, but small and simple.
These small and simple moments have come in the form of a joke, a laugh, or a smile. Though the moment was a brief sliver in time, it served as a pivot point, causing a shift in perspective. An internal shift in perspective has the power to change everything.
When my son, Wil, started kindergarten, he began having certain behavior problems. Kindergarten was overwhelming for him, and when he was tired or didn't want to do something, he responded by crawling under a table or plopping himself unmoving on the floor.
This behavior was affecting his learning, and was starting to disrupt the class. Though his assigned teacher's aide and I tried many different approaches, nothing had a lasting effect.
Over time, I worked myself into a high state of stress over these behaviors. I didn't know what to do and felt at a loss. In desperation, I talked to a friend from our Down syndrome support group about this situation. Her son is a few years older than Wil, and I hoped she would have some ideas on how to help him.
As I described Wil's kindergarten story to her, a big, calm, knowing smile spread across her face. She put her hand gently on my shoulder and said, "My son did that all the time! Don't worry! He'll outgrow it. This is what we did..."
Surprisingly, I found myself laughing with her about all the things I had only moments ago been feeling distressed over. This was a pivot point for me. My friend's knowing smile and shared story completely changed my perspective of the situation.

Good Life

from Truth Be Told by Shawn Rohe:

 

You know the song Good Life by One Republic…

  It is so applicable to my life.  Every time I hear it, I melt.  I truly have a Good Life!

Woke up in London yesterday

Found myself in the city near Piccadilly

Don't really know how I got here

I got some pictures on my phone

With this verse I instantly think of Welcome to Holland by Emily Perl Kingsley

New names and numbers that I don't know

So true!  Majority of the names and numbers stored in my contacts are relatively new.  Granted I know them now.  Less than a year ago, I knew none of them.

Address to places like Abbey Road

Day turns to night, night turns to whatever we want

We're young enough to say

Oh, this has gotta be the good life

This has gotta be the good life

This could really be a good life, good life

Gotta be the Good Life?  Nope. This IS the Good Life!

I say, "Oh, got this feeling that you can't fight"

Like this city is on fire tonight

This could really be a good life, a good, good life

To my friends in New York, I say hello

My friends in L.A. they don't know

Where I've been for the past few years or so

Paris to China to Colorado

To some of my friends I do say hello.  To the others, they are the ones in L.A.; they don’t know my new life.

Sometimes there's airplanes I can' t jump out

There was a point in the past 16mos that I could completely visualize myself on the edge of the airplane door, ready to jump out.

 

Sometimes there's bullshit that don't work now

There is stuff that doesn’t work now {relationships, techniques, systems, etc} and bullshit is exactly what it is.  

We are God of stories, but please tell me

What there is to complain about?

When you're happy like a fool, let it take you over

When everything is out you gotta take it in

What is there to complain about?  Nothing, I have a good life.  I occasionally need this song to shift my thought process, make me happy, and allow it to take over!

Hopelessly

I feel like there might be something that I'll miss

I do deal with a constant feeling that there is something that I’ll miss ~in regards to Natalie~ whether it’s a service, conference, seminar or class that I need to sign up for or enroll her in.  It’s a constant.  It will never go away. As she progresses and reaches milestones, as her parent, that means there's another step to be taken.

Hopelessly

I feel like the window closes oh so quick

This symbolizes my constant awareness that I need to be one step ahead.   If she misses something, if that window of closes to quickly; it’s my fault for not being there sooner to scoop up that opportunity. I am the only one to blame.

Hopelessly

I'm taking a mental picture of you now

My mental picture of Natalie is a side profile of her face.  I pray that it will be etched in my memory, forever.

'Cause hopelessly

The hope is we have so much to feel good about

I truly know that I have so much to feel good about!!

Oh, this has gotta be the good life

This has gotta be the good life

This could really be a good life, good life

I say, "Oh, got this feeling that you can't fight"

Like this city is on fire tonight

This could really be a good life, a good, good life

Oh yeah, good, good life, good life, oh, this is

This IS the Good Life!

Hope vs Reality... and Perspective

from BabyCenter's group on Down syndrome:

Yesterday 2 people commented on how smart little B seems and it made me sad. I want to be hopeful but I also want to be realistic. I am afraid of being disappointed maybe? I want to love and accept her no matter what but sometimes my mind wanders to a place where she is keeping up with her peers . How do you reconcile this?

Great question!  I think this is something a lot of parents struggle with.

On the one hand, it's important to know that as a population people with DS have come so far due to changes in acceptance, medical progress, law changes.  We have so many more things available to us, including an easier exchange of info, the learning techniques developed through research at DSE.  People with DS ARE accomplishing things never imagined before.

I see these things, know they are beneficial. Sometimes I worry though - are new parents so fucused on these things that the future of a highly "successful" person with DS is the only future they can imagine?  Are they clinging to that - in a healthy way, or sometimes in an unhealthy way?

I see phrases like "except don't accept" and "more alike than different" sometimes used as things that create a type of tunnel vision - THIS is the path, THIS is the future, if I just concentrate hard enough, give her enough therapies, explore every option, work with her enough, don't accept "that type" of behavior, push, push, push.  The negative flip-side to that - sometimes - is the implication that if a child is not progressing to a certain ideal, it is the "fault" of parents.  They did not "expect" enough and shame on them:  I've seen that come out on this board sometimes, and other places.  And I've seen some parents of children or adults who are not "performing" to a certain level, or "behaving" a certain way, or even experiencing more than the typical medical conditions - stung by comments, with a result that they sometimes feel they are not supposed to share.

The "reality" is that people with DS are a diverse collection of individuals.  A lot goes into that diversity:
- knowledge of parents
- efforts of parents
- opportunities available in the community (school, etc.)
- medical conditions & availability of treatment
- unique genetics of the family
- those genes of that individual - both the variation in the extra 21st chromosome material, and the genes aliong the rest of the chromosomes (There was some great congressional testimony on this but I can't put my hands on it.)
- the presence/ absence of associated with DS but not necessarily common behavioral issues (elopement, OCD, sensory issues, etc.)
- the development & use of safe, proven treatments, some currently in trials, some being developed
- and likely a host of other factors (nature, nurture) that make up who we are.

I have 8 brothers and sisters, all the same parents, same home, same upbringing.  My sister and I are night & day - and the rest of them fall somewhere in between.

People with DS are influenced by that extra 21st chromosome, but are MORE than the 21st chromosome which impacts many systems - they have a whole bunch of other genetic material influencing who they are, and certain of those genes interact with that extra genetic material.
Give your child love, learn what you can, and do what you can, understanding that you still must live your life and you have other responsibilities.  Give your child the proper tools, but try to embrace who she is.  Your child will make you proud regardless of "performance." A child who does not meet certain preset "expectations" is NOT a consolation prize - she is a unique individual with a place at your table, in your home, at your school, in the community, in this world.  She will be your superstar - whether than is seen by some objective measurement or not.

BabyCenter's group on Down syndrome is for sharing our children's triumphs (OK, shamelessly brag), challenges (OK, throw a pity party), ask questions, share advice, experiences and information with each other.