Tuesday, April 2, 2013

Why Autism Families Can Benefit From Blogging

With April being the international month of Autism Awareness, I am sharing about one of the biggest passions of my life.  Taking it a step further, I explore why autism families can benefit from blogging, and consequently, raise autism awareness in such a fantastic way!  Blogging about family life with autism is a great way to reach out to more than one person at a time, and take awareness to a broader platform.  Other families can benefit from shared experiences, knowledge, resources and support provided or needed by the writer.  This resource wasn't available during the previous generation that coped with autism.  Since autism is a fairly newish field, we are learning about it as we live it.  Our recollections and experiences are crucial to research and to getting to the next stage of finding out more about causality as well as a potential cure.  Imagine if parents thirty years ago had access to insights that the Internet provided back then, just how much farther along we may be as a community.  If you are a member of a family that is coping with autism, I bet you have a lot to say.  You may not even realize just how much you do, until you start writing it down.  If your family copes with autism, you've got a story to tell, and if you write about what you are passionate about, you can't go wrong

9 Reasons for autism families to start blogging

1.  Raise awareness  
This is the number one reason that I started a blog.  By blogging about your family life with autism, you are raising autism awareness in a very personal and meaningful way.  When we Light it Up Blue on April 2nd, we honor our loved ones that live with autism.  Part of raising awareness however, is also shedding a light on how autism affects the whole family.  Therefore, in events such as Walks For Autism, we empower families, and not only individuals.  It is important not only to raise awareness for those who don't know much about autism, but also to encourage families with very young children, to get early diagnosis and early childhood intervention.  Studies have shown that doing so is key to a higher quality of life for the child later on.  By tapping especially into the early childhood years of ages 3-5, you are catching a key developmental time in your child's developmental potential.  We now have the ability to catch signs of autism from extremely early on, where a generation ago, this was not the case.  If we can help families that are not aware of this, ain't that something grand! 

2.  Provide support to other families
When a family first starts out on their journey on the autism spectrum, the first thing that they want and need is SUPPORT!  Receiving support is the greatest gift of all.  By providing support, even though you may need it yourself, you will experience a wonderful type of healing that transpires within this process.  The kind of support that I continually look and long for, has not been easy for me to find, so I try to offer it to others.  No one can do this on their own and keep a healthy mindset.  That old saying, "It takes a village to raise a child," well, that's exactly spot on.

After receiving Jake's autism diagnosis in '09, the progression of events went something like this for us:  You are shocked, sad, angry, helpless and frustrated.  You blame yourself, perhaps that somehow, it may be your fault.  You think of dreams that you have for your child - all the could have beens, and your spirit is crushed.  You may be in denial that, maybe your kid was misdiagnosed, or that he can grow out of it in a few years, and you may also be numb of emotions.  You are physically and emotionally drained.  You want to move forward at some point, but are totally overwhelmed.  

Suddenly, you have to cram study a new language called Autism, so that you could better understand your child and provide him what he needs.  You want to do right by your baby and provide the very best possible, but you realize that since you know close to zero about what is taking place, that you feel like a child, yourself.  Your parents did not prepare you for this - no one did.  You don't know how to move forward.  You lay awake for nights on end, tossing and turning, at best.  You have to learn about all of the therapy options, schools and resources out there, make appointments and get on waiting lists.  But mostly, you feel alone.  You worry about having a stigma put on your child, about people looking at him differently, and talking about him in insensitive ways.  You worry about bullying.  The worries are endless.  Once you get through this initial part of the journey, and things start to sink in, you realize all that needs to happen immediately.  You try to get your senses back to normal, to get your bearings.  However, life as we know it, is no longer on "Plan A," and there is no more "normal."  Instead, a new "normal" is about to take place, as you brace yourself for the ride of your life.  

Since the start of our journey, I joined a meet up support group back in San Antonio, made friends with other autism families, and sought counseling by an experienced autism support counselor.  I took an autism resource class and Alex took a fantastic advocacy class.  We went on yearly Walks For Autism, which was the first time that we felt empowered by hundreds of people that came to support their loved ones as a community.  If your family has gone through this ordeal, you are absolutely the best source of support to other families, because you know exactly what it means, and you simply get it.

A couple of years into this process, I founded my own autism online closed Facebook support group, Puzzle Pieces.  I initially started this out, because I needed a support group to be mobile with me throughout our family's military moves.  We share research articles, inspirational visuals, therapy resources, updates on how our kids are doing with therapies, and provide confidential support.  I also founded a meet up sister group locally, Puzzle Pieces - Autism Support in Montgomery, AL.  If you are affected by autism and would like to join the online group/s, you can contact me.  https://www.facebook.com/groups/129900443760015/  
 3.  Receive support
By blogging about autism, you will receive support from others in the autism and special needs community, as well as friends, new friends that you will meet along the way, and readers who may or may not have any background in autism.  By blogging, you reach out with your words, and these words have power.  You are putting your energy - your karma out there.  This energy will come back to you threefold, get started and watch it happen!  

Don't shut out people that don't have a special needs family.  Moreover, don't fall into the mindset of it's me and my child against the world, or me and my family against the world, inadvertently, isolating yourself.  This is a dangerous predicament to find yourself in, as it can lead to depression and loss of hope.  Also, how can we raise autism awareness if we only surround ourselves with autism/special needs families?  

Sometimes support comes in unexpected ways.  It is those families that don't cope with special needs, that can often be that source of this support, because they have the ability to do so.  They can be there for you, simply because they don't have your family scenario, and therefore, have more energy, or the capability to help you out.  DON'T PASS IT UP because you don't want to seem needy or feel uncomfortable receiving help.  Give yourself that well deserved break that you know you need.  Be open to different kinds of friendships and support, because you will want a balance, and as my husband Alex says, "you can't breath autism 24/7."  It also gives you an important opportunity to recharge yourself for your family, and isn't that priceless?

Matching magnets to text - activity taught in Jake's autism class

4.  Prevent bullying
By promoting awareness and acceptance, we consequently stand up to bullying.  Bullying is a major worry for parents of kids on the spectrum.  The more severely autistic a child is, the more chances there are for this child to be bullied because he/she sticks out in a crowd.  Statistics are varied on this, but range from 46% to an astonishing 90% of kids on the spectrum who will get bullied at some point, and that it's more common in public school settings.  These are startling statistics!  Imagine our kids that don't have the ability to speak.  How are they going to let us know if they are being bullied, other then by showing us a different behavior such as crying, or acting out?  We would have to do the math, and figure it out on our own.  By raising awareness, we speak out to other parents about instilling principles of kindness and acceptance of others' differences.  If children are to be raised to value differences and treat others kindly, they are less likely to bully others. 

5.  Stress relief
Blog for a personal outlet, therapy and stress release.  This is a different sort of outlet that you can not get from having a conversation with someone else.  Let's face it, we can all use some therapy every once in a while.  Why not proactively get it on a regular basis, by writing down our thoughts?  Some people, of course, already do so by keeping a personal journal.  This is different, in the sense that it is not private, so you will decide if it is the right outlet for you.  You may decide that you want or need to do both, as you probably wouldn't disclose the most personal details of your written journal in your blog.

6. Tracking developmental milestones  
This is a great way to keep track of therapy goals, interesting things that happen or get said.  This is a wonderful and handy way to record special moments that you want to save and share with others.   Just the other week, I wrote a post called Book on the Roof about a week that my husband was out of town, and the funny and ridiculous things that happened on the first day.  I'm glad that I wrote it down, because I know that the little details of that day would eventually fade from my memory and be forgotten.  I know that other families were able to relate to that post, and by writing about it, it also provided support and encouragement to other families, as well as some comic relief for me.

7.  Inspiration 
You never know how inspirational reading someone's story can be to someone who needs a smile or some hope on that day that you posted.  Words can have a powerful impact, and readers can take a multitude of messages from your words.  Be yourself and keep it real - don't try to be something or someone that you are not.  Sincerity is always best, and this way, you are sharing your own unique beautiful and personal voice.  

8.  Strengthening Family Relationships
In our family, we have experienced couple blogging.  I started blogging first, and within a short period, Alex started his own blog as well: Capt Dad - Family Life With Autism, Twins and the Military http://alexjrose.blogspot.com/ and what a great thing it has been! Our individual recollections have consolidated into a family effort of raising awareness and extending a hand of friendship and support to other families.  Doing this simultaneously, individually, and also as a team, has strengthened our partnership, our resolve, and in our moving forward as a family. 

9.  Connecting the puzzle pieces 
By raising awareness, providing and getting support, talking with others about autism, and promoting acceptance, you are personally filling in the missing puzzle pieces of that larger global puzzle.  By making these connections with our efforts, we are actively completing this picture.  Since there is no cure for autism yet, we are providing the only cure that we currently can, by connecting the pieces and being there for one another.  There is power in numbers!  Your blog will receive views from countries all over the world, as you make a difference on a larger platform.  It only takes one person to make a difference, because that one person can influence others; it's a domino effect.

Jake at age 6 1/2  - Occupational Therapy 2013

How to get started

Have you thought of the title of your blog yet?  I suggest something memorable that summarizes who you and/or your family is in one sentence or phrase.  Maybe even a phrase that your child loves to say.  Think of something meaningful to you that captures your/your family's essence.  I started my blog on Blogspot through Google.  If you go this rout, set up a Google profile, including a photo, a self description, your interests, and what you write about.  Set your privacy setting accordingly on your profile - following the steps is user friendly.  Once you are all set up, it's pretty much like writing a word document: do a spell check, have someone do an edit read through for you if you like, and press Publish when you are done. 

Privacy Settings
You will want to have personal guidelines and limitations of what you are going or not going to disclose.  Things to avoid disclosing are: specific personal details such as dates of birth, financial information, or anything that could lead to identity theft.  Avoid disclosing any extremely personal information and anything that would lead to an invasion of privacy of your partnership.  Refrain from anything that may offend some of your readers.  If you know that family reads your posts, then do not write things that can hurt anyone's feelings - use your judgment and discretion, of course.  Basically, be mindful that this is an open resource to all readers, unless you set your blog to be viewed selectively.  Keep in mind that if you do so, you will not get as many views.

Community Blogs
Once you get your blog going, you can request to link your blog to other sites, such as the family blogging on Autism Speaks.  If you happen to be a military family, you can link your blog to AMFAS (American Military Family Autism Support - http://blog.amfas.org), MSNN (Military Special Needs Network) and Milblogging.com (Military blogs).  This will give you additional views, as well as being part of these blogging communities.  There are many other sites out there that you can research and join.  You can also share posts on Facebook, that way, friends can view your posts conveniently when they are online.  If you set your post setting to Public, you will receive more views.  On my blog, I added a Note to Reader, asking readers to share posts that they find meaningful, helping us raise autism awareness in this way.  These are just some additional ideas to consider, as you move forward in your blogging journey.  

Montgomery Museum of Fine Art

The Rest?
The rest is what I think of as an open canvas with a multitude of dimensions and limitless possibilities.  I hope that you enjoy and find much fulfillment from blogging about autism.  It can be a life-changing experience.  If you would like to get started but need some encouragement or moral support, feel free to give me a shout in my comment section below.  Who's ready to give it a go?   

To new beginnings!

Visit my blog:  
Lily and the Roses ~ 
Creativity with Autism, Twins and Military Adventures 

Leave me a comment if you find any of my posts meaningful to you.  Feel free to share posts with your friends to help us raise autism awareness and acceptance.
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Where I display 
my artwork, music compositions and travel photos 
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