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

WORRIES ARE WICKED

Tony Walker

In March my little girl turned 13. I officially have a teenage daughter!

Watching our kids get older is a reminder of how fast time is going isn't it?

For me & probably many of you it is also a reminder of something very fearful.

What's going to happen??

My daughter is autistic. High functioning but still autistic.

Will she be be able to get a job?

Will she able to hold that job?

Will the job be something she enjoys or will she be wiping tables at some restaurant?

Will she be able to have her own place?

Will she be able to fulfill her dream of getting married & having 4 kids?

Will she be ok????

I am worried. I am very freaking worried. 

Most likely my son will do the right thing by looking out for his sister, help her out, etc. But it's not fair to him. Who knows where his dreams will take him.

Sometimes I tell myself not to worry... focus on the now. Other times I get crazy because high school graduation is right around the corner. I don't wanna be holding my dick & wondering what the hell do I do now!

How do you guys handle this? Do you plan or do you not worry???

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? 

CRIME AND PUNISHMENT TONY WALKER

Last week I attended a lecture about handling a child with ADHD.
My son is ADHD so I thought it would be interesting.
It was a good lecture but one thing stuck out in my head & I wanted to see what you Delayed Loungers thought of it.
The expert giving the lecture was talking about consequences & rewards for the ADHD child. He said that one of the consequences of forgetting to bring some homework home, forgetting to write down an assignment, etc would result in losing TV or something like that.
When asked to expand on this the man talked about how one child refused to bring certain homework home so he lost something. He then talked about how another child spit grapes all over the floor because he didn't want to do his homework.
I raised my hand. I said that those examples are children acting out, not an ADHD child who is seriously trying his hardest but still forgets certain things. This man's response was he once had to fill out Medicare forms but lost out on some payments because he was filling certain forms out wrong. Losing money forced him to not make those mistakes on the form again.
WHAT?!
Tell us what you think. Do you agree that a child should be punished when he is doing something (or not doing something) that is out of his control?

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!

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.  

SHOW SUPPORT for the FOURTH ANNUAL WORLD AUTISM AWARENESS DAY

PUBLIC SERVICE ANNOUNCEMENT:
SHINE A LIGHT ON AUTISM

Marion Pellicano Ambrose

“Autism” is a term used to describe a group of complex developmental brain disorders
known as Pervasive Developmental Disorders (PDD, PDD-NOS), Asperger's Syndrome,
Rett Syndrome and Childhood Disintegrative Disorder. They are also known as Autism
Spectrum Disorders.

Today, it is estimated that one in every 110 children is diagnosed with autism, making it
more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.
It is estimated that 1.5 million individuals in the U.S. and tens of millions worldwide are
affected by autism. According to Government statistics, the prevalence rate of autism
is increasing 10-17 % each year. Boys are four times more likely than girls to develop
autism.

IS IT RIGHT OR WRONG?!

Tony Walker

There were several comments on my blog about my little girl's autism so I thought I'd post some more thoughts on this subject.

I am a member of the Nassau Suffolk Chapter of the Autism Society of America, or NSASA. One of the many great things they do is running a support group through Yahoo.  There any member can ask a question or make a suggestion and it gets emailed to all the members of the society. Other members can then respond to the email for all to see. It's a wonderful tool to get autism related information and actual real life points of view.

The reason I am mentioning this is because there is a big debate going on there this week. Someone wrote that their 16 year old son is so developmentally challenged that she is scared of him having his own children. She's thinking about getting her son a vascetomy. Naturally there is a major debate now going on about this at the yahoo site. While it's unfortunate, I totally understand this woman's predicament. I'm sure if you're a parent of an Autistic child you can see orin some way relate to this woman's problem. 

I want to know what you think. Do you think it's right or wrong for a parent to remove that option from their Autistic child? 

http://www.dropdeadcomedy.com

http://www.facebook.com/pages/Drop-Dead-Comedy/124058930987437

     

FOR ME, IT'S MY LITTLE GIRL

Tony Walker

Almost everyone has a connection to someone with autism whether it's a family member or the family member of a close friend. For me it's my little girl Sami.

Sami will be 12 in a week and a half. She is very high functioning for someone with autism so the past 2 years or so Sami's become aware that she is different from most of the other kids around her. Recently we introduced the word autistic to her.  Now she's so curious about that word.  About a month ago I came across an ad in Newsday about a movie that was playing at the Huntington Arts Cinema called "Wretches & Jabberers".  It's about two men.  One in his 40's the other in his 50's, and they are both autistic. I decided to take Sami to see this movie.

I'M WHATS SHAKIN, 
IN MORE WAYS THEN ONE

Tony Walker

What a way to spend a week. On Monday it started with the chills, my poor daughter is sick too. Now my daughter is demanding more time off from school when she is better, so she can enjoy herself like other kids on winter break. Sorry, but it doesn't work that way. My girl will be very upset with me if I don't pull her out of school to enjoy herself. You may be thinking at this point that my daughter is a brat, no - my little girl is Autistic. She does not understand the repercussions of me pulling her out of school, she doesn't understand the repercussions of most things.

The Lounge's target audience are people in their late 30's and up, so I'm sure a good percentage of our readers have some connection to a child or adult with Autism. My daughter will be 12 in three weeks. I find myself asking where the time went. Realizing how fast time is going is really scary. She turned 12 so fast,  and in no time at all she will be 18 and graduating high school.