THE JOURNEY CONTINUES...

Barbara Ward-Finneran
It's National Autism Awareness Month.  Today is "Light it Up Blue" day.  I'm embarassed to say that I forgot to wear blue today, except for my blue jeans.  I will admit that that was accidental.  It didn't even dawn on me when my friend greeted me at her door in her 5K for Autism shirt.  Days ago I remembered that April was approaching and that, among other things, meant Autism awareness month and I needed to get writing something for this recently neglected blog.  Practically every day I want and hope to write and yet the days slip by and the posts happen less often then I'd like, and less often then they did not so long ago.  That said, writings fill my head of so often and lately just don't get tapped out on the keyboard.  But today cannot slip by without a post.  Two years ago I wrote Journey Through the Silence.  Every word still rings true today, for me, my family, my friends and so many on this journey - a journey with out and end.  Awareness is a great step but ACCEPTANCE needs to be our destination.  

I may not have remembered, but I didn't forget.  I couldn't forget.  My husband, sons and I walk this journey every day and we are so blessed to have dear friends who walk it with us as well as those who hold our hands along the way.  Today was a day like most others.  It's spring break in our neck of the woods and before my boys morning sleep over play date ended I was anxious to get the next activity planned.  A few texts later and a group of us were meeting at Subway for lunch.  Our adventure for the day.  Five bicycles, two moms, three hungry adolescent boys (two of whom have ASD) and a mile or two between us and food.  My dear friend greeted me at the door, (Autism shirt on), and we rallied the troops into helmets and were on our way.  A bike ride with some teen and or almost teen boys, not a big deal to many.  A great accomplishment for us.  A new triumph for us and our kids.  Another notch on our warrior belts.  Another friend met us there... and now we were three moms and five kids.  Three moms of spectrum kids... three moms who got each other as we slid through the chaos of the busy lunch line and order changes.  Even with the best laid plans --- there was going to be a 15 minute wait for meatballs (Change in plans - OH NO, you ASD moms get it).  Thankfully all rolled with that obstacle.  We sat.  The kids laughed and chattered.  We ate.  We talked.  We shared. The journey never ends...  Our friend who drove to meet us was leaving for an IEP meeting for her son.  My heart ached for her anxious nerves as it was so easy to remember gearing up for similar meetings.  There we sat, a group of moms like any other - blessed to have a decade of love and support between us.  Years of shared victories and heartaches.  Endless hours of advocating, supporting and at times venting.  (Occasionally adding wine when needed.)  We are just like other moms.  Only sometimes... often, we were different, and we got it, got each other... our places on the spectrum vary, but we got it. And, out of the deal got priceless friendships.  Having seen each other tears and held each others backs for years knowing there was strength in numbers and we give that to one another unconditionally.  To quote, Mazie La Bird, from Seussical the Musical, that all of children were in together, "How lucky, how lucky, how lucky you are". I wouldn't be where I am today with out the love and support of my family and friends.  My sons wouldn't be where there are and who they are without that same support system.  HOW LUCKY "WE" ARE...  

... A few minutes on Facebook this evening made me formally remember it was Light it Up Blue day.  I scrambled to share and post a few things and also posted a link to Journey through Silence.  Debated in my mind about a fresh post for today --- before today was over.  I was leaning towards letting it go, when I was messaged, (Someone had read my Journey link, ironically by a friend I made through DRL when she wrote a guest post. Never underestimate the power of a post, lol.)  Her words moved me to tears as she shared about young man in her life who lives with ASD and ending with: "God Bless you for setting the bar for parents who all too often do not advocate for their children.  I 'm honored to have you as my friend".

All too often we may take for granted what our words mean.  What it means when we wait in silence for those first words.  Or when we speak words of encouragement and faith.  Or when we share our journey so another doesn't feel alone.  When we can translate the words our tears speak whether from joy or pain.  When we speak words to advocate for our own and in doing so light the path for others.  Our words have power, more so when spoken with kindness love and acceptance.  

Be aware.  Be welcoming.  Be the voice with the words that someone needs to hear.  Be accepting... Awareness is a great step but ACCEPTANCE needs to be our destination.  Isn't that every mother's greatest wish, that our children be accepted and loved.  We aren't different at all!  

To all who walk with me --- I LOVE YOU - you know who you are! XOXOX
-Barbara

NATIONAL AUTISM AWARENESS DAY

Awareness is a step...

Acceptance is the destination!

JOURNEY THROUGH THE SILENCE

Originally Posted Friday April 1, 2011
A Reprise in honor of Light It Up Blue & National Autism Awareness Month

Barbara Ward-Finneran

Today begins National Autism Awareness Month.  I remember a time when my only reference to this word conjured images from the movies; Son Rise and Rainman. My how that changed for me after the birth of my first son, Shawn.  

My first child.  My beautiful baby boy.  The light of my life who I had longed and prayed for for years.  Who made me love to the limitless levels that I hadn’t even known existed.  He was perfect in every way, especially to my husband & I and our families.  His smile lit up the room as much as it filled up my heart.  He giggled, loved and played just like most babies.  As he aged towards becoming a toddler each milestones achievement along the journey wasn’t on schedule.  I also noticed differences that I couldn’t quite nail down, but just knew, something was “off”, “different”, my friends had babies the same age and my heart ached to hear him say Mama.  The months went by and Mama never came...

Doctors told me, "boys just talk late". I fought to get services. I was expecting my second child and wanted base line tests before the regressions that are natural with the arrival of a sibling.  I fought and fought and fought.  With my husband, Steve, we fought, and fought and fought. None of it ever coming easy.  Medical tests. Genetic testing. Hearing tests. MRI’s. Endless paperwork with torturing fill ins where you choose; “always, frequently, sometimes, never”. Doctors, doctors, doctors. Evaluations. Observations. Neurologist visits. Speech Pathologists.  Occupational therapist.  The list could go on and on.  

Then there was Terry, who I first met at a support group for Moms who had children with developmental delays.  After about five minutes, with my then toddled she questioned, “Has he been diagnosed with Autism?”  Autism. The word had entered my head a “million” times.  (Often enough that I had researched it and questioned the pediatrician, who again disregarded my concerns, “Boys are slower, sometimes”.)  This was the first time someone else had dared to speak the word I feared.  Terry was the angel dared me to look at the darkness and also shined hope on the path to light and knowledge.  She was (and is, and forever will be) my first HERO in the journey through the silence.

In the weeks and months that followed, I fought tooth and nail for help and answers.  Knowing it would break my heart as much as it healed it.  I fought because my son needed and deserved every service and help that I could find for him and it was my job to be his advocate.  

Once you hear, “Your child has Autism Spectrum Disorder (ASD)”, your journey has changed.  It's  journey through the silence, that begins with running from the jagged edges of a broken heart. A walk you can only understand if you've waited 34 months to hear "Mama" (or have never heard it at all), or you've been told "your child will never attend a "real" school because his IQ is 67".  (Yet at three, my son could read books but not "talk".) 

There is so much more to be said and told of this journey with Shawn - enough to fill endless blogs.  To be said and told of the journeys of those whose lives have been touch by Autism Spectrum Disorder. Autism affects one in 110 children.  One in 70 boys.  Although some would argue it is not an epidemic, you cannot convince me otherwise. Autism is not a disease - our kids just think differently. It is a processing disorder.  One that can change everything.  It can tear families apart.  Financially destroy them.  Sever friendships.  I’m not sure you can find a person today who does not know someone whose life has been touched by and or changed by Autism.  

In many ways, ASD changed everything in my life.  Autism expanded my views of compassion, tolerance, and advocacy as well as making me a better person in the process.  I am incredibly blest and lucky.  My eleven year old son is an incredibly happy, smart, and “high functioning” little man. In addition to all the challenges that came with ASD, Autism also  made me acutely aware of the angels in my life.  I have friends and family who never turned away.  Who went to support groups with me even though their kids were “normal”.  Who taught me how to be an advocate.  Who shut gates for me at playgrounds - because Shawn was a “runner” who didn’t answer to his name.  Who would stay with me into the darkness of the night at the park because Shawn “needed” to swing.  Who would still invite me to play groups even though Shawn didn’t “play” but would create endless lines of matchbox cars and horde magnet letters.  Who watched him draw chalk portraits again & again, then listened with love as he repetitively "labeled" the names of the people drawn.  Who spent countless hours with me, at places with ball pits, because despite their lack of "perfect cleanliness" they provided good sensory play. Who would help their kids understand.  Who understood because their kids were “spectrum” too. Who would be angry and grieve with me. Who held me when I wept.  And, cried with me when he spoke.  

Everyone should be so blest!  You know who you are.  

I thank you one and all - From the depths of my heart, 

I WILL FOREVER LOVE YOU AND THANK YOU!

Today & tomorrow I will wear blue.  For Awareness.  For Shawn. For the friends in my life who walk this journey in similar shoes and their children (I'd love to name you all).  For all of those who live in a world with Autism. For a world that needs more understanding and awareness. Won’t you join me? How will you light it up blue? 

SHINE A LIGHT ON AUTISM

On April 2nd join Autism Speaks in celebrating World Autism Day and help shine a light on Autism by participating in Light It Up Blue.  Wear blue, light up your house, your porch light, change your Facebook profile picture to a blue puzzle piece or another Autism Awareness image- - - anything at all that shows your support of creating awareness for this global and growing public health concern.  Light it up blue is in it's third year of this initiative to help raise awareness by having supporters wear blue and having iconic landmarks and more then 200 buildings around the world Light It Up Blue to show their support.  

For more information and to see a slide show of the beautiful displays of awareness involved in Light It Up Blue go to:

Shine A Light On Autism - Autism Speaks n autism.

FEARING THE WORST...

Tony Walker

It's not Halloween but I am going to share with a scary story.
If you've read my posts you may know that I have a 12 year old autistic daughter. She is very high functioning but just makes the spectrum.
Wednesday, November 30th, 2011. A day I will never forget.
My daughter is in the drama club at her middle school. She attends the regular middle school in the town we live in. Last year she joined the club. She had no friends in the club. None of the "typical" kids would talk to her yet she loved going. This year one of her classmates is in the club. Yay!
When any after school activity is over the main office is open so kids can use a phone to call someone for a ride. In my daughter's case she always used that phone or her friend's cell to call me. A rehearsal schedule was not given out yet so I had no idea what time rehearsal would be over so I could expect my call.
Around 515 I realized she should be home. My wife was working so my son & I ran up to the middle school. The security guard told us that the drama club let out at least 45 minutes prior to us getting there. Immediately I went into "Oh shit" mode. Panic.
My son & I walked the parking lot. We split up to look around the middle school. We ran over to the high school which is right next door. Nothing.
We went back home in case someone gave her a ride. Nothing.
I know the parents of the friend who is drama club with her. So I called their house. The friend was absent from school that day.
I cannot describe to you the feelings I felt while this was happening. Is my girl gone? This happens to other people, not us! Am I going to be one of those people crying to Diane Sawyer on TV pleading for my girl's return? I kept picturing her face. My son was ready to burst. I had to keep it together for him.
A buddy of mine who happened to stop by right at that moment agreed to stay at my house to man the phones as I head out to search.
We went back to the school. Still nothing. As we started driving up & down Wantagh Ave my son is practically begging me to call the cops. I considered calling my father in law who lives nearby & is a retired policeman. I thought about calling my wife. I figured I don't need to call anyone, she's fine. Then again I was also thinking I need to call someone, she's gone! Every face you see on the street I studied. Every person I made eye contact with I hoped was going to be someone with info. Nothing. Nothing. Nothing.
This went on for over an hour.
Finally my buddy called me. He said my dog started barking so my buddy looked out the window. Nothing. But something had to be up if the dog was barking. All of a sudden in the backyard was my girl.
He called me. I raced home. I grabbed my girl who looked frazzled. She said the main office was closed, the security guard was on his phone for a long time, & her friend was absent. One of the main symptoms of autism is the lack of social skills-my daughter asked 2 girls she didn't know (which was a major thing for her to do) if she could borrow their cells. These girls were "typical" girls. They both said no. My daughter panicked so she ended up walking home. She went the long way.... crossing some major roads & walking close to 3 miles.... IN THE DARK!!!! My heart races just thinking about it. Sure enough the very next day in our town someone tried to throw a teenage girl into a van.
Needless to say I ran up to the school the next morning to kick some ass. Why would the teachers (yes there are more than one at drama club) leave the place without checking to see if everyone, especially the special needs child, is accounted for? Why is the security guard yapping on his phone instead of doing his job?? Why are the "typical" kids so freaking mean?? I thought there was a lot more acceptance these days!!
All school districts need to supply more knowledge, understanding, & acceptance into the general population of their schools, plain & simple. Autism numbers are rising all the time. Practically everyone is closely associated to someone with some kind of autism these days. I am appalled that these things happen.
I went out & bought her a cell phone the very next day.
Have you ever experienced something like this?
A few years ago my daughter's bus was lost for 2 hours. We were freaking out then too but I don't wanna make this post an even longer read. Point being no matter how many times this happens you never get used to it. The most scary feelings you will ever have, believe me.

WEAR BLUE TODAY

Barbara Ward-Finneran


Autism affects one in 100 children.
One in 70 boys.

My son, Shawn is one of the many children.  Today I will wear blue.  My whole family is in blue.  Our DRL family  is wearing blue (pictures to be posted later).

Shawn asked why we "had" to wear blue, and smiled when I told him it was to celebrate kids like him.

Today I join with the world to create awareness and celebrate Shawn and all those who have made a Journey Through the Silence , like our family, to find courage, triumphant over challenges, and celebrate the joy in the laughter and love that is always perfect in every way.

HAVE AN AMAZING SATURDAY!

Enjoy the beautiful day, breathe deep, laugh, smile, hug, someone - somehow celebrate the good in your life! Celebrate all that matters to you in your corner of the world- light it up blue!

I HOPE YOU LIGHT IT UP BLUE!

WORLD AUTISM AWARENESS DAY!

LIGHT IT UP BLUE - REMEMBER, WEAR BLUE FOR AUTISM AWARENESS on April 1st & 2nd 

Are You Going To Light It Up Blue?

On the evenings of April 1 and 2, 2011, prominent buildings across North America and the world — including the Empire State Building in New York City and the CN Tower in Toronto, Canada — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2.

Autism support groups are aiming to light the world blue all throughout April — city by city, town by town — by taking action to raise autism awareness in our communities. How will you light it up blue?

LUNCH TIME POLL

As per AUTISM SPEAKS autism affects 1 in 110 children, 1 in 70 boys..odds are you are directly or indirectly affected by autism...

How have you been affected?

In addition to wearing blue, please SHINE A LIGHT today and share a snippet of hope and your story.

Here in the lounge a few of our family members are directly affected, follow the links below to their stories
http://delayedreactionlounge.blogspot.com/2011/04/journey-through-silence.html
http://delayedreactionlounge.blogspot.com/2011/03/tony-walker-almost-everyone-has.html#more

JOURNEY THROUGH THE SILENCE

Today begins National Autism Awareness Month.  I remember a time when my only reference to this word conjured images from the movies; Son Rise and Rainman. My how that changed for me after the birth of my first son, Shawn.  

My first child.  My beautiful baby boy.  The light of my life who I had longed and prayed for for years.  Who made me love to the limitless levels that I hadn’t even known existed.  He was perfect in every way, especially to my husband & I and our families.  His smile lit up the room as much as it filled up my heart.  He giggled, loved and played just like most babies.  As he aged towards becoming a toddler each milestones achievement along the journey wasn’t on schedule.  I also noticed differences that I couldn’t quite nail down, but just knew, something was “off”, “different”, my friends had babies the same age and my heart ached to hear him say Mama.  The months went by and Mama never came...

Doctors told me, "boys just talk late". I fought to get services. I was expecting my second child and wanted base line tests before the regressions that are natural with the arrival of a sibling.  I fought and fought and fought.  With my husband, Steve, we fought, and fought and fought. None of it ever coming easy.  Medical tests. Genetic testing. Hearing tests. MRI’s. Endless paperwork with torturing fill ins where you choose; “always, frequently, sometimes, never”. Doctors, doctors, doctors. Evaluations. Observations. Neurologist visits. Speech Pathologists.  Occupational therapist.  The list could go on and on.  

LIGHT IT UP BLUE - REMEMBER, WEAR BLUE FOR AUTISM AWARENESS on April 1st & 2nd

Are You Going To Light It Up Blue?

On the evenings of April 1 and 2, 2011, prominent buildings across North America and the world — including the Empire State Building in New York City and the CN Tower in Toronto, Canada — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2.

We’re aiming to light the world blue all throughout April — city by city, town by town — by taking action to raise autism awareness in our communities. How will you light it up blue?