Best Buddies

Saturday, October 20, 2012 was the Audi Best Buddies Washington, D.C. Challenge:


Up before the crack of dawn to head into the city with directions in hand. 
Walking through the darkened city with the streets surrounding the National Mall all blocked off by police for the ride.
Arriving at the packet pick up tent, walking across strategically placed rubber mats to avoid the pooling puddles from the previous nights storm. 
Prepping myself and my bike for the ride. 
Deciding on inserting toe warmers at the last minute.

Seeing this in the sunrise:

 

Priceless

 

Everything went off with out a hitch.  I even saw two of the Bridgie's Brigade team members prior to the ride, Angie and Sue.

 

As Anthony Shriver gave words of encouragement and thanks for our participation, Ben Wright (father of four, two with special needs) sang the national anthem, Carl Lewis started the countdown, and Lauren Potter (Becky from Glee) sounded the air horn, I could not stop the flow of tears.

 

 

Tears of gratitude for the other people in the world who 'get it'.  It's easy to feel very small in this world of special needs, to feel as if you are the only one.

 

And here on this day, in this humongous city I was not alone.

 

Those tears became ice crystals as I started to ride through the closed streets of our Nation's Capitol, stinging my cheeks.

 

We were treated to a beautifully colorful sunrise as we rode around Haynes Point.  It's too bad the 'Man in the Mud' has long been moved to the National Harbor because this journey I am on is truly an

 

"Awakening".

 

 

 

100 miles went by quickly.

 

 

I rode the second 50 miles with a ride official and another young bearded man. 

The ride official took turns talking with me and then with the young bearded man but for some reason the young bearded man and I never really spoke to each other until the last 10 miles, when the flood gates opened.

 

Turns out the young bearded man is a Franciscan Friar, about 6 years out of Catholic University and this was his first Century (as if I am some pro having done one other!).  We talked about families and growing up and then I asked if he knew Jim Sabek, a Friar who frequented Seton Parish before he moved.  "Oh, yes, Jim".  We got a few chuckles about Jim's joyful and humorous spirit.  It was here that we began talking about Erin starting faith formation this year which eventually transitioned into talking about Eoin and Bridgie.  At some point I said "my youngest daughter has Down syndrome.....which is why I am here".

 

Neither man said anything.

 

 

The silence, again.

 

 

Like those silences in the hospital after Bridgie's birth....

( http://brylfamily5.blogspot.com/2012/10/defining-moment.html)

 

There was peace.

 

There was an unspoken conversation, realization, and peace.

 

The silence was less than 5 seconds, a pause really.  But unlike other silences after this type of proclamation, there was acceptance. 

 

The conversation flowed on naturally about all of the kids after that.

 

And at the end of the ride there were two big hugs for me.

 

From the ride official and the Friar.
The finish line cheering crew had long since given up the ship to participate in the tandem bike rides and the friendship games!

 

 

 

 

Hugs of understanding and friendship.

We went our separate ways and I quickly changed and went to find Angie and Gi.

Once we got together we headed over toward the celebration tent in time to see the end of a fox hunt demonstration.

The celebration tent and dinner were amazing.
(but do keep in mind that I do not get out much)

What was most incredible to me was the enthusiasm of the leadership and explanation of where our Best Buddies dollars were going.

There was a speech by a young man from California who has benefited from the support of Best Buddies and credits their training to his success as a full time employee of a large law firm.

I am trying to get my hands on video of this man's speech because I know it would move most of you.

We did not stay for the Sugar Ray concert but I assure you it was a huge success.

Going into the event I was not sure if I would be organizing this event again next year.

I can tell you with resounding enthusiasm that Bridgie's Brigade will be participating in the
2013 Audi Best Buddies Challenge.

Over 2.5 million dollars was raised by this event. 
While our $7,025 pales in comparison to that figure, I left the 2012 Challenge feeling as if we had made a difference.  That EVERYONE who contributed to the Bridgie's Brigade cause of supporting Best Buddies had done something great.

I cannot begin to express my gratitude to the fab five who gave from their hearts by joining this team.

Sue Franklin
Angie Swindell
Jackie Floyd
Sharese White
Gi Kim

I cannot thank you enough or reassure you enough that you have made a lasting impact on my heart.  That you have reassured me of the goodness of the human heart.

ALL of you who made the Bridgie's Brigade Yard Sales such a HUGE success,Thank You.

Melissa Manning, responsible for the 'awesome crap' and 'put our junk in your trunk' signs, was CRUCIAL to the success of all three sales.  With out your sorting capabilities I would have been lost.
Thank you.

From t-shirt buying, to flat donations, to donating your stuff, to participating in the event, all of it was instrumental to our success.

I have spoken about the purpose of Best Buddies many times and I have researched their programs but I never came across their vision until Saturday, a week after the event.

Best Buddies International Vision:

To put Best Buddies out of business.

Enough Said, we'll be back.





"I'd love to go out of business," he said. "I know that's not the goal of most companies, but that's definitely my goal. I'd love to be in a situation where people with intellectual disabilities naturally integrate on their own and are able to get employed on their own and don't need us. I think it will happen, and one day we won't need an organization like Best Buddies, but we'll be here for as long as they need us."

Anthony Kennedy Shriver


 

 



 

 



Eric Ludy - Depraved Indifference

I have watched this everyday since I found it on Ellen Stumbo's blog.

 

http://www.elliestumbo.blogspot.com/

 

 

Ellen Stumbo has three little girls.   Her second born brought the gift of Down syndrome, yes I said gift.  This little gift opened Ellen's heart and eyes to the reality of life of children with special needs in Eastern Europe.  Ellen and her husband saw this video and were so moved they acted.

 

They adopted Nina, their now middle daughter, with cerebral palsy from the Ukraine.

 

This motivates me, this drives me.

 

To see the good in humanity when there is so much darkness.

 

We have all been afflicted with depraved indifference at times in our life.

 

We must continually push ourselves to move past it and answer the call.

 

What that means for each person is different.

 

 

But, Christian or not Christian if we seek to live a purposeful life we must stand up for the least of these, the fatherless.

 

The timing of this video could not be greater for me.

 

 

The recent blasphemy by A.C. and the use of the word 'retard' over and over has brought anger to my heart.

 

Anger, fear, disappointment, and sadness.

 

But more than that it has brought reality.

 

Reality that we all suffer depraved indifference at times in our lives.

 

Reality that most of us have belittled others with our words. Whether it is 'retard' or some other derogatory word.

 

Continually, the argument is made about freedom of speech, that it is just a word, it is not directed at people with disabilities or God forbid "those who would be affected by it are too retarded to understand anyway".

 

This type of behavior is not shocking by she who shall not be named.  What IS shocking is the number of people who felt the need and the desire to re-tweet her words. Who did not stand up and say "Whoa wait a minute".

 

People will use the word and we cannot banish words from language for word usage is a choice.

 

What I suggest is that we stop NAME CALLING all together.  Why do we speak this way?  Is it respectful?  Does it have merit?  Is it even funny?  To me it is not.

 

You know

 

I am so retarded.

 

What a douchebag.

 

He's such an Ass hat.

 

You idiot.

 

And worse.

 

We all do it. We all say it.  Why the negative self-talk?  Why the disrespect?

 

Oh, right IT'S FUNNY and I DID NOT MEAN IT THAT WAY.

 

Right.

 

Now don't get me wrong.  My own husband has called me out for being a name caller pre and post Bridgie.

 

 

But I have learned and continue to learn through the GIFT I have been given.

 

As for me and my house we will try our best to push past the depraved indifference in our hearts, we will try to use respectful speech, and we will respectfully stand up to those who don't.

We will try to defend those who cannot defend themselves.

We will try to provide for those who cannot provide for themselves.

 

We have been given a tremendous gift that continues to astound and we will not waste it.

 

I am so thankful for all of our family and friends who have never batted an eye on our journey.  Our friends and family who are grateful for Bridgie in their own children's lives.

 

We are blessed beyond our wildest dreams.

 

 



Manners Matter

Around our homestead there are not too many 'rules' or 'expectations'.  From the time Erin was born, I have mothered by feel and in the moment.  There were never strict timelines but rather routines and doing things in a certain order but not by the time on the clock.

We don't punish our kids but rather teach them through natural consequences and dialogue.

Lest, you stop reading because you think this is a holier than thou post, it is not. 

We are not perfect, we make huge mistakes, we yell, and wonder about what we are doing to our kids all of the time.

There is one area where we remain steadfast and true with our children from the time of their toddler comprehension abilities.

PLEASE 

and 

THANK YOU

It's very simple really.

If you want something say May I please....

If I or someone else gets it for you say Thank You....

These are three little words that I say constantly throughout the day.

Eoin: I want chocolate milk.

Me: How do you ask?

Eoin: May I PLEASSSEEE have chocolate milk.

Erin:  Can I please have a cookie?

Me: Why, yes since you said please.

Erin: gets cookie.

Me: What do you say?

Erin: Thank you.

This is probably THE only area where Jerry and I mesh perfectly in our parenting.  There are a ridiculous amount of teaching moments in this area and we both rise to the occasion from sunrise to sunset.

So, naturally for us, when Bridgie started signing the first two signs we taught her were

Please and Thank You

This flabbergasted our OT for about a minute.  The first time she witnessed Bridgie signing Please and Thank You she said:  "We don't really teach those signs until much later focusing more on things like "milk", "eat", "bottle", and "more".

I said "Why? those are the first words we taught the older two when they started talking so we just naturally did with Bridgie, too".

The OT kind of paused for a minute and then said "You know what. You're right, why don't we teach those signs right away?  Our goal is to include the child so why not teach them manners early".

We both laughed and kind of reflected on this one moment of clarity and went about tending to the 

screaminator.

 

 

All Done

 

 

 

 

 

 

 

 

 

Therapy

"To make a difference for infants, toddlers, and preschoolers with disabilities, early intervention and preschool special education must be built on respect for families and their primary role in the growth and development of children. Our mission and focus is to ensure that every child has a place in the community and the best possible chance to succeed."

Maryland State Department of Education

Disclaimer:  There is no scientific basis or evidence to support this post.  This is my opinion based on our experiences thus far.  We have had great experiences with both of our county appointed PT and OT.

Most Physicians, Therapists, and Educators agree that early intervention is crucial for the development of children with special needs. 

 From birth to age 3 the most rapid and developmentally significant changes occur in basic physical, cognitive, language, social and self-help skills that lay the foundation for future progress. Children with Down syndrome typically face delays in certain areas of development which is why Early Intervention is so highly recommended.  downsyndromealabama.org

Bridgie was evaluated by Anne Arundel County Infants and Toddlers at 8 weeks of age and began therapy shortly thereafter. In January she will 'graduate' and be placed in a county preschool setting based on her needs.  We will no longer receive in home services the day she turns three.

Therapy is a big word for what actually happens.  Through infant and toddlers a physical and or occupational therapist comes to the house and 'plays' with your child.  In the early months it is more or less a re-training of the parents mind.  Breaking down the how's and why's of your child's delays.  The PT and OT are teachers. They are not really telling you anything you don't already know but they are showing you new ways, different ways to do the same things you did with your other newborns.

As we begin our transition from Infants and Toddlers into the big and scary world of preschool for Bridgie, I have been reflecting on the value and purpose of  therapy.  

First and foremost, Love is the greatest therapy for any child.  Without love there is no real purpose or benefit of said therapy's.  In this department we were doubly blessed as both our OT and PT adore Bridgie.

Second, the parent must be a willing participant in learning about their child.  The therapist comes a couple times a month, the rest of the therapy is up to you.  Therapy sessions are as much for the child as they are for the parent to have a sounding board for the interventions they are making on a daily basis.  For me the therapists provided someone to talk to about my own ideas and interventions.

Third, therapy is purposeful play and making adjustments to the daily living and routine of the child.  Anyone with children knows you cannot force a child under three to do anything.  Therefore, therapy needs to be creative.  It's as simple as moving favorite objects for your child to chase to as complicated as teaching your child to use a straw, by cutting the straw, taping it to the cup, or manually adjusting the flow with your fingers.  Drinking from a straw is a great oral motor activity used to strengthen muscles typically used for speech and also for children who have tongue protrusion.  Tongue protrusion can interfere with drinking, eating, and speech.  Use of a straw requires retraction of the tongue which is a great exercise for those with protrusion.

We've come a long way over a long time.

These are my favorite straw cups as they are very rigid and she cannot pull the straw out of the top.

YET.

In addition to finding the right cup and straw, the right technique, and lots of practice we had to find the right consistency.  We have used a smoothie and are slowly making it thinner and thinner so that she has to work harder to keep it in her mouth and swallow.  The faster the flow (i.e. the thinner the liquid) the less control Miss Bridgie has.

Our favorite smoothie ingredients.

For more information of oral motor exercises and straw therapy check out the Speech Mama link below:

http://www.thespeechmama.com/2012/04/04/how-to-teach-straw-drinking-to-children-with-down-syndrome/

As an aside, constipation seems to be prevalent in many children with Down syndrome, perhaps due to low muscle tone in the digestive tract.  At any rate it is a battle for us and we have tried many things.  Miralax being the go to plan of action from our doctor, I wanted to find something more natural and came across fruit-eze.  Only available online, to my knowledge, it is ground prunes, dates, raisins, and prune juice.  We use it in smoothies and oatmeal on a daily basis.  It helps tremendously but if we miss a dose or doses things get bad quickly.

Back to Therapy.

Fourth, there is no substitute for examples of how to do things like walking, talking, playing, and dancing.

Meet Bridgie's best therapists:

Dancing on the sloped driveway!

Perfect for balance, depth perception, and stability control.

Genius.

Crazy Hot Rodder Racing.

Running on a hard surface, in a zig-zag pattern.

Way to raise the bar, Eoin!

Making mud pies.

Digging, pouring, filling, and scooping.

Fun fine motor and creativity.

Fun on the farm!

Fun textures, uneven walking surfaces, climbing, and squatting.

Not to mention all of the things and animals and people to talk about and to. 

Erin and Eoin's constant chatter are great examples of speech.

Incessant, but great none the less.

In conclusion, therapy and early  intervention are great resources and tools and I have loved our therapists and experiences but there is  no substitute for a safe and loving family environment.

And if you see us at the park, I am probably doing 'therapy' there too. 

Great kid size steps for learning.

Happy Fall Y'all.

Defining Moment

 

 

When Bridgie was born there was for me a very real and transforming moment.

 

In the middle of the night, in a dark hospital room, my husband asleep on the pull out sofa thing, my newborn daughter asleep in the bassinet.

 

It had been a long day that culminated with a beautiful baby girl with sparkling blue eyes and the cockeyed glance.

 

 

The big girl version of the cockeyed glance

 

 

 

Baby Bridgie brought something extra with her.  No not a chromosome or a medical issue. 

 

Bridgie brought peace.

 

 

Bridgie brought a long overdue peace to my hardened, burdened, confused heart.

 

 

It was instant that feeling of peace.

 

I saw her little face all swaddled up as they brought her to my side after the c-section.

 

 

I knew two things in that instant.

 

Down syndrome and peace.

 

 

They took her away and I marveled at what had just happened as I lay under layer upon layer of warmed blankets feeling the warmth of the morphine deep in my veins.

 

 

My human brain tried with all it's might to tell me to scream out, what's wrong with my baby!!!????

 

 

Over and over this scenario played out within me.

 

 

And each time, my heart answered with peace.

 

 

Late that night in the dark of the room.  I tried to play devil's advocate with my heart.

 

 

Down syndrome, what will it mean.  Will she live?  Will Erin and Eoin accept her?  Will she burden them? 

 

I tried with all my might in my post-morphine mind to make myself think logically.

 

Down syndrome is bad, right?

 

We don't want this, we can't do this, right?

 

I tried to push past the lucidity of the peace that enveloped me.

 

I tried to analyze this with my hardened, burdened, confused heart.

 

 

I succeeded in working myself up.

 

I mean, sweaty palms, mind racing, heart palpitating, legs shaking, cold nervousness in my veins, the taste of bile in my throat.

http://brylfamily5.blogspot.com/2011/07/fear.html

 

And as fast as I brought it on, it was gone.

 

The peace, the peace I could not fight.

 

What I knew was that I loved this little girl ferociously and nothing else mattered.

 

In this day there were many defining moments.

 

The loudest, most clarifying, and pervasive moments were the unspoken.

 

The nurses who said nothing about our baby girl who obviously had Down syndrome.  They knew it we knew it and we said nothing.

 

Looking back, I was selfishly keeping her and her potential diagnosis to myself because I did not care or want to hear what they thought or had to say.

 

I already knew what I needed to know.

 

LOVE.

 

There was the unspoken by my husband reeling in his own way.

 

Not a word of negativity, not a word of nonacceptance.

 

Only Love.

 

Somehow, we mangled through that first night each in our own cocoon.

 

Feeling alone, feeling scared, feeling what we did not exactly know.

 

What we do know is that we were not alone.

 

 

 

 

 

Linking up With Ellen Stumbo

 

 

 

 



Terra Firma

Love for a newborn

Instant, pure, and exposed

Unconditional

A day in the life...