SPD and 30 Stories in 30 Days

Hartley Steiner, a wonderful advocate for Sensory Processing Disorder (SPD), has put together a month long event to help raise awareness for SPD.  Her "30 Stories in 30 Days" campaign will feature a collection of stories from parents and professionals about their experience with SPD and the many challenges that the individual and their families face on a daily basis.  Please click to view the background for the event as well as the amazing prizes people can win.

The fundraiser also aims to procure donations for the SPD Foundation and I have added a widget to the upper corner of my blog (see it over there at the right?) which makes it easy to donate to this great cause.

I am excited to have an entry featured for this project and it will be posted the morning of October 7.  Writing the story was emotional for me and I trust that people will get a good sense of how much our son's sensory issues have impacted our lives.  I am proud to be a part of the event and hope you will find the time to read all of the stories that are featured.   

I believe we can handle it

"But can we handle it
could we dismantle it
or should we fear the void
and just be para-paranoid?
if it's understood
it could be used for good, and would
if you will believe in
all we can conceive"

The lines above are exceptional lyrics from 311off of their Soundsystem album. As I heard the words the other day it dawned on me how much they can apply to spreading autism awareness and helping people understand more about the disorder. (This is from the song “Evolution” and yes, I listen to music that many would consider old at this point but I don’t care)

First the "But can we handle it?" lyric could be the question a parent asks themselves over and over as they navigate the autism journey. There will be days when you just want a break, to shut things out for a few hours but that is not our reality. The challenges are everywhere but so are the fun and the silly times and with each accomplishment you and your child will feel pure joy. As an advocate, are we able to maintain our stance in the face of adversity? When opposing opinions are presented and our views threatened, can we persevere and handle ourselves accordingly?

What about the line, "Could we dismantle it?" One of my goals is to help dismantle negative stereotypes associated with autism so people can see past the perceived differences and recognize they are interacting with another human being. Maybe they have a speech delay or lack of social skills but if you just give the person a chance, they may just amaze you with all they have to offer. I know I would also like to break down the walls that currently surround my son's voice, finally allowing him to share with us his thoughts, the things that make him happy, sad and afraid. I know that it will happen but I get anxious waiting…

Next up is the lyric, “should we fear the void and just be paranoid?” If we allow ourselves to cave under the pressure, who will stand up for our children? Can anyone else really know your son or daughter as well as you do? There will be difficult times but we should do what we can to conquer our fear of the unknown.

Read this line again:
“If it’s understood it could be used for good, and would if you will believe in all we can conceive”

Amazing. Think about this for a minute. I bet many of you know someone with autism. Maybe your son or daughter has been diagnosed. Or a grandchild, sibling, niece or nephew. It could even be a friend or neighbor.  I implore everyone to take the time to learn about autism and to help educate others.  Together the autism community and its advocates can make a difference. As more people are recruited to joint the fight to help bring about significant change, then all those affected by autism can begin to access the services needed to set them on the path to success. The first step will be to believe in all that can be accomplished…

At the end the song they answer the questions:
"Yes we can handle it
we could dismantle it
we should not fear the void
and just be para-paranoid
if it's understood
it could be used for good, and would
if you will believe in
all we can conceive"

Our ultimate autism warrior mom

Jessy,
Our journey together has been filled with an abundance of love and laughter. I was apprehensive about moving to New York on my own and working in Manhattan, even on a temporary basis. Coming from the Midwest I was unsure of what to expect and was quickly overwhelmed with all the commotion and speed of the city. What are the chances that you and I would meet and under the circumstances in which we did?

Our lives have also been touched in a way I never thought possible. Despite the challenges of raising a child with autism, Diego has taught us so much more about ourselves and life in general. We face each obstacle together and our two sons are extremely fortunate to have such a caring and compassionate mom. Your patience, support and determination to help Diego are the qualities that make you our ultimate autism warrior mom.

Special needs parenting has proven to be difficult but with each round of tears also comes the joy of seeing our son make significant progress. Today I am reaching out to simply say one thing to you: THANK YOU! Thank you for bringing your hope, love and guidance into the kid's daily lives. Thank you for always knowing what to do and say when the kids are upset or sad. Finally, thank you for being there for this special needs father, as I spread awareness, acceptance, and knowledge of autism on behalf of our beautiful son, Diego.
Happy anniversary!
Love,
Lou

Hope for Autism

Recently, I began posting updates through Twitter with the hashtag #HopeForAutism.  I decided I would use this in order to post some hopes and dreams I had about the future of all those affected by autism.  Just as with any major shift in ideology, there are those that will impede progress, and there are also quite a few people that will help bring about positive change.  I want to be a part of the latter, spreading a message that inspires others to learn and understand more about this puzzling disorder.

I feel that creating more awareness has to be coupled with more knowledge as well.  Just because someone knows I have a child with autism does not mean they truly understand all that much of what we go through.  Even if I suggest they read a book on the subject how can they really know what it feels like to watch their son or daughter struggle to speak or fight through the sensory issues?  Well, one way to start is to cite specific goals for both my son and the autism community as a whole so that other people can begin to catch a glimpse into our lives.  By talking about my hope for autism I want to help people put aside their fears of the disorder and begin to embrace this segment of the population that has so much to offer.

Will you join me and spread some #HopeForAutism?