Tuesday, November 26, 2013

Thanksgiving - Reflections Over Bread Crumbs

It has been quite a few months since I had written my last post.  After a time of introspection and just living the day to day, I have been feeling the urge to start writing again.  To backtrack, my last post was about the beginning of the summer and my son Jake's difficulty with adjusting to his summer program.  After trying out the program for about a month, we had decided that although it was a program for special needs, it did not suit the needs for our kiddo.  It did not provide enough structure for him, which he really needs.  Even though at the time I was incredibly frustrated by the situation, we got to the point where we just chalked it off to: well, at least we tried.  That experience taught me that just because a place has a good reputation and may look good on paper, it may not be the right place for every child.  It felt like we were desperately trying to fit a square peg into a round hole, and it was time to move on.  So we did.  We got through the rest of the summer.  


Camp ASCCA at Lake Martin, AL - an evening boat ride


Although it wasn't the experience that we were hoping for, there were however a couple of highlights for our family that summer.  We went to two special needs camps: Camp ASCCA (Alabama Special Camp for Children and Adults) in June and Camp Yofi at Ramah Darom in August.  Camp ASCCA was our second summer and Yofi was our first time.  ASCCA includes all special needs children and young adults and Yofi is a Jewish camp that holds a week long program especially for autism families.  We loved both camps, as they each offered different types of services and activities as well as very special counselors who put their heart and soul into our kids.   


Art activity
Easter Seals provided a free special week for military families!


Through the journey of putting ourselves out there by stepping outside our daily comfort zones of predictable routine-filled structure, with trying out special needs camps and providing fun new family experiences, we knew that we had found a home away from home at Yofi.  We had a lot in common with other families there and made some new friends.  Because there was respite provided for the parents, we basically got date nights with other parents every night.  There were creative social activities planned for parents after kids went to sleep.  The camp also set up special precautions to help our families during that week, and we felt like it surpassed our expectations.  One such precaution (or baby proofing, as we lightheartedly call it) was at the evening of the bonfire, the counselors stood shoulder length apart at the edge of the lake, so that kids couldn't make a run for the water.  Given that autistic kids are very attracted to water, we were very much appreciative of that.  Each autistic child was partnered with a friend (a personal counselor who took the child on group activities without parents and siblings and attended to his/her every need).  The siblings had their own designated group activities that parents would drop them off at.  Parents had their choices of assorted activities, and they could also choose to rest if they'd like.  This aspect of the camp made it feel like we were (dare I say) on a vacation on a resort and pretty much appealed to every aspect of family life with special needs.  We had never experienced this before.  


One of Jake's favorite activities at Yofi

There were of course family activities scheduled for us to do together as well.  One of my personal highlights were the yoga sessions at a pretty little spot by the lake.  I had one private session on a rainy afternoon and the sound of the drops gently splashing on the water was incredibly serene and dreamy.  The other session I did with Jake, where we did lots of interactive posses and movements, and I was delighted to see him get involved and be in motion and relaxed altogether.  A new friend was there with her twin boys and we enjoyed experiencing that session together.  


Jake's counselor carried activity cards on a key chain for Jake

Another cool thing that the camp did was set up the cafeteria to have the main sitting/eating area in the middle and two play rooms, one on each side for younger and older kids.  Counselors sat outside the room with an attendance board for checking in and out, so that all kids were accounted for at all times.  This enabled parents to complete their meals and continue shmoozing with other parents and counselors in a relaxed atmosphere.  This was something which we thought was absolutely brilliant.  I could go on and on singing praises here, but I think you get the picture.  It was a wonderful experience for our family.  Subsequently, our twins repeatedly asked if we could return the following summer and kept talking about our camp adventures for weeks after we returned home.


Every child at Yofi got some sort of plate award

So that was the rest of our summer - it ended on a very positive note.  Alex and I felt very encouraged and proud of our little family for getting out there, taking charge and making memories with our children.  We felt fortunate to find such types of summer programs for special needs families and we want to encourage other families that may be gun shy to take such a step.  A lot of it is hands on and exhausting, especially in the heat of summer with outdoor activities, but staying at home all summer and finding daily activities, can be just as difficult at times.  It's also a great way to get kids more adjusted to being away from home in a fun and safe environment.  Basically, we got hooked and look forward to coming back in future summers.   



In closure, what I'm thankful for this year is that we had paved a new path with little bread crumbs (mind the turkey stuffing analogy) for us to come back to and find.  They lead the way for us, inviting us to return, with each step forward, getting closer and closer to warm familiar surroundings and friendly faces.  And as we look back over our shoulders, the crumbs slowly fade and disappear.  We then intuitively throw out fresh new crumbs, paving a fresh new path for us to return to for the following year.  I guess I am mostly appreciative of taking a leap of faith, putting our good energy out there, and seeing what happens.


Happy Thanksgiving, 
and may your bread crumbs pave the way to a lovely holiday and happy home!
 

Wednesday, June 5, 2013

The Terrible Two's At Age 6 1/2?

I remember reading a few weeks ago about Autism Speaks having a live chat with Dr. Temple Grandin.  Someone had asked her a question about communication and she shared that when she was a young child, she knew what she wanted to say in her mind.  She even had the exact words that she wanted to say, but couldn't physically get them out of her mouth.  Imagine how incredibly frustrating that would be.  I know that I would become angry if I were in that situation - wouldn't you? I have to wonder whether Jake is experiencing the same thing and is physically acting out of frustration.  Perhaps he is acting out to get some sort of sense of control?

I also have read (I can't remember which autism related book it was now) that "whenever in doubt, presume intelligence."  This means to always give your child the benefit of the doubt that he/she understands what's going on and what we are saying.  This is also why it's so important to not speak about your child and autism issues within his presence, as if he is not there.  This is something that Alex and I are consciously working on and we'll catch one another if we do this.  This brings me to the point that I had found myself in yesterday afternoon, after picking Jake up from his new summer program:

I am frustrated.   I am frustrated and tired.   I am tired of being frustrated.  I am frustrated and tired of going through the autism roller coaster of cyclical behaviors.  Right now Jake is into hitting and kicking and that's been going on for several months now.  It's completely ironic that my mild-mannered, sweet loving and gentle son is expressing his frustrations through hitting and kicking - but nonetheless, here we are.

It feels like some sort of developmental milestone.  It's like going through the "terrible two's," but we are six and a half years old, and weigh about 60 pounds.  In fact, it's Alex's theory that since Jake is developmentally delayed, that he's actually going through his "terrible two's" now; close to the age of seven.  Could this actually be a plausible theory?  It does make total sense to me.  The frustration that he's exhibiting, probably due to his speech delay/lack of speech, and not being able to quickly express his needs and thoughts verbally, is causing him to act out physically.  It also feels like an impulsive response to anything displeasing to him.

It is not easy to watch for me, and it is also the kind of behavior that doesn't get defused overnight; we've been dealing with this for several months now.  At first, it was just mostly during ABA therapy, but now that he started a summer camp program, these behaviors manifested themselves right away. Once again, I am frustrated that I don't have the right answers and I don't know what to do.  So here I am, frustrated on many levels - including being frustrated for him, on his behalf, that he's not able to express himself in a socially acceptable way right now.

I am worried that this behavior is not getting defused quickly enough and may be becoming his new norm for the time being.  I worry that if this doesn't get defused soon, that he may get kicked out of his summer program.  This is stressful for me because it means that the program failed to address this correctly, and it also means that I have less time to get things done at home, and have some time to myself.

My plan of attack is to come and be there with him during his program, observe his behavior and also see if my presence brings him some comfort.  Maybe this would help him settle in more easily to his new environment.  We will also have our BCBA (Board Certified Behavior Analyst - who works weekly with ABA therapy with Jake) come and discreetly observe him and see if he can give me and the teachers some feedback.


Now for some of the positive things that happened this week
1 - Jake started saying "Mommy" at the beginnings of his requests, and not just asking for things without calling me anything.
2 - When we were playing around he looked at me with a loving smile and said "I love you" all on his own.  This was non-prompted, which opened up the flood gates to at least ten more I love you's from him.
3 - He is now able to read 5-6 sight words in a row, when last week it was challenging for him.


Closing thoughts
There is definitely some growing that is taking place right now.  We tend to observe it with Jake in spurts and it's consistent with a pattern of two steps forward - one step back.  There are always back steps in his growing and learning process, but he keeps on consistently moving forward and developing in this type of progression.  While some things, like the undesired behaviors of kicking and hitting, are not pleasant and take a lot of persistence and work to defuse, other things, such as the positives that I reference above, are incredibly encouraging.  They bring me hope of what is still yet to come from this beautiful son of mine.  I am so thankful for those moments that take our breath away.  These moments are those times in our lives which inspire us to keep keeping on.  These moments inspire me to keep loving as much as humanly possible and to stay the course, one step at a time.




Wednesday, May 22, 2013

Autism Mom – Finding A Balance


As parents who work to facilitate learning/therapies for our kids who live with autism, we tend to put ourselves last.  I am no exception to this, and I fight the struggle of achieving a balance of priorities in my life regularly.  After all, getting through the day in our sort of household is about prioritizing, right?  I have come to realize over the years that what it really takes for me to feel happy is to have a state of balance in my life. 

When you are a family that is at the beginning of your autism journey, right after you receive the autism diagnosis, you basically just go on “survival mode.”  You do what you can as you prioritize the needs of your child.  As time passes and you sort of get into the swing of things: managing the household while facilitating schooling, therapies and appointments, you realize that hey, if I don’t take a time out to take care of myself, I will eventually get sick or simply burn out of doing the daily grind.   The problem is that we don’t have time to get sick and burn out, but our immune system is at higher risk when we are stressed.  More often than not, our kids get sick, it circulates to everyone in the house, and by the time it reaches us, we don’t have time to rest because we are taking care of one or more little ones who don’t feel well.  We have to stay healthy and well to manage the load, and it is always much more stressful when someone gets sick.  I am guilty of having said "I just don't have time to take care of myself," but what I was really feeling was more like: I just don't have the energy to take care of myself while dealing with a full load.  The only thing left to do to combat this dilemma, was to reshuffle my priorities and not forget to add myself onto the list this time.  In fact, why not just make a new list altogether?  So here we go:


My 7 personal must - haves for achieving a sense of well - being and balance

1.  Getting good sleep and proper rest
2.  Nurturing my marriage, family relationships and friendships
3.  Daily/weekly physical activity - Going for walks, being in the sun, breathing fresh air, stretching
4.  Seeking counseling support services when necessary
5.  Staying plugged in to my autism support group/networks – seeking and providing support
6.  Taking vitamins and necessary medications daily
7.  Staying connected to my creative/spiritual outlets – personal development and achieving  self-fulfillment from the things I love to do.


These “must haves” for me, are things that I have found along my way in my personal journey of being a mother who juggles: parenting a child on the autism spectrum, twins, military lifestyle, with a need for a creative outlet.  These are things that I have found that I cannot give up or live without.  I share these to provide support to others who may be dealing with something similar, in finding your own sense of balance, as you progress in your personal and family journey.  

So take that time out for yourself weekly, and daily and do something that brings happiness to you every single day.  If you wait for some point in the future to do this, you may realize that you’ve spent days carrying on and not having done anything for yourself that makes you happy – how fair is this to our kids?  I see this as equally important to doing everything else on the priority list.  It took me some time to finally get to this point where I am making this a priority.   It takes effort every day to keep it on my conscious and I am much more happy and fulfilled now.  I have found my balance and will continue to work on keeping it daily.  I will close off and wish you happy trails in finding your personal balance and share one of my favorite quotes: “When Mama’s not happy, ain’t nobody happy.”   

To new beginnings!

Wednesday, May 8, 2013

A Cure for Autism? Thoughts and Reflections


There are some strong feelings circulating in the autism community about the idea of a cure, or a recovery, in regards to autism.  While this is a tricky subject to discuss for various reasons and opinions, I often think about the idea of a cure and what the future may bring.  Where does my own comfort level fall within this spectrum? What do I think about a potential cure for autism within the near future? Where do I envision our society heading in this collective journey, in what is still largely a mystery?

I have read many times about parents being offended at the idea that their child would even need a cure, when he or she is not sick.  After all, autism is a neurological disorder, and not a disease like cancer, heart disease or diabetes.   I completely understand and can relate to these sentiments.  There are parents who feel that autism is as much a part of their child’s personality, as their hair and eye color is a permanent physical attribute that a child possesses; this being a part of their core make up.  Utilizing a cure (if it were even possible) would then imply that we are going to and/or want to change our child’s personality.  In that sense, it is a difficult concept to break down and process.  This would also present other challenging questions such as: if a child is more severely autistic, does autism make up a larger part of his or her personality?  This makes the issue of a cure even more difficult to take in.  I am one of those parents who believe that autism is a big part of who my child is.   It doesn’t define who he is, but it does play a large part in how he perceives the world, and every interaction that he experiences.   









Alex and I believe in teaching skills through therapies (specifically ABA therapy and then to a slightly lesser degree, speech and occupational therapies) that break down learning into smaller steps with lots of repetition on a daily basis.  We have many friends who take various approaches to treatment that work for their child and their family.  We are not seeking to impose our view of therapy on anyone – we are simply sharing what works for us.  We also stay open to the idea that at some point in the future, there could be a cure to some or many symptoms associated with autism.   This would possibly help with anxiety during transitions from activities and helping the ability to better focus during certain activities.   We already know that there are medications out there that help reduce anxiety.  We know of Ritalin, which helps those coping with ADD/ADHD focus more easily. Similarly, we also know that in autism there are parts of the brain that don’t send signals as effectively to each other, causing a weakness in responding to certain social situations.  What if in the future a treatment were to be found to help with those connections in the brain in autistic individuals?  While it is not possible now, if a scientifically recognized and accepted treatment became available in the future, we would not be closed off to it.   

Jake's class - reading activity


For me, the idea of a cure is not a cure in the sense that one would have a single or even several treatments and be “cured” or “recovered” of autism.  I think of the idea of a possible cure in which a treatment would help with certain symptoms of autism, but not wiping out the autistic traits.  There are parents out there who report that their child was autistic and has recovered from autism.  There are kids out there who eventually lose their autism diagnosis.  It is hard to know what to think about such scenarios, as every individual with autism is so different.  From the reading and research that I have done over the past few years about the subject, I have come to believe that although someone can make huge strides in therapy, there will always be natural autistic tendencies in a person, and while he or she may “blend in” to the rest of society, they will have to fight natural autistic tendencies as they cope through the use of tools and skills acquired along the way in order to fit in.  Depending on the severity of autism in that individual, it may be a harder or easier task to do so.

I keep a realistic approach to what we need to be focusing on now as far as teaching functional social and academic skill building, and I don’t have a false sense of hope for a potential cure.  I do however think that with more awareness about autism, as more kids get diagnosed and plugged into therapies, and funding for autism research continues to grow, it is not far fetched to think that medically treating various symptoms of autism can be attained during our lifetime.   

The Sensory Room at Jake's school - the Autism class spends time there during the day

Another aspect of a cure that is also valuable to me is the idea of a healing taking place in our society.   I envision parents continuing to make connections with other parents in autism families, providing support to one another, and promoting a sense of well being and supportive atmosphere as we lift each others spirits. 

I discuss in other posts how autism affects the entire family and how parents have to keep it together daily.  The stress that this produces can sometimes be debilitating on parents emotionally, on a personal level and in a relationship context with one another; not to mention the affect it also has on siblings.  While many of us focus on the daily tasks to maximize learning while keeping our eyes out for a potential cure, we shouldn’t forget about being supportive to one another in the present.  Let’s help keep each other going and moving forward in this journey as a community. 

Meanwhile, we will do what we can to facilitate learning and setting our children up to lead a life that is as fulfilling and as independent as possible.  In the case that we don’t find a scientifically proven cure, we will always know that we did what we could to safely provide the very best for our children as they move forward in their own journey, with the tools, skills, support and love that they’ve been provided with all along the way.





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.
 
Visit my other blog: 

Where I display 
my artwork, music compositions and travel photos 

Creationlily




Saturday, April 6, 2013

87 Blue Balloons and 1 White





April 2nd was a very special day for us - worldwide Autism Awareness Day and Jake's school had some special events in which we were involved, including: a balloon release (87 blue balloons and 1 white to represent the autism statistic of one child in 88 living with autism), a walk around the school with teaching posters for the kids about autism along the way, guest speakers, Local TV, radio, and newspaper coverage (Alex and I were interviewed about the sensory room on the radio), cutting of the ribbon ceremony of the sensory room that Jake's class uses and is the only one of it's kind in the entire state of Alabama.  The program culminated with a reception with a special cake that you'll see in a photo bellow.

The link for the Montgomery Advertiser video clip of the day event and article ending with a bit about our family: http://www.montgomeryadvertiser.com/apps/pbcs.dll/article?AID=2013304020034&nclick_check=1





 


















Posters that each class at Jake's school made for April 2nd.  They walked with their posters around the school - What a sensational way to raise autism awareness for children.  Everyone participated!!



We returned to the school later that same evening to see the school be lit up in blue as the eventing became dark!  It was a very successful and emotional event for us, and Jake was exceptionally affectionate and loving.  He kept on asking me " how are you?" He probably asked me this question at least twenty times and was very happy - it was just perfect!  The kids got to build an autism bear on a field trip, which was later given to them by the Parent Teacher Association of the school as a gift that same evening.


Jake's Build-A-Bear


Bracelets for donations to support the sensory room
















Jake's kindergarten class, as well as the older autism class closed the evening with a finale song that was very special for us to see how much fun they were having.  Jake was not able to sing, but was moving to the music and enjoying the event with his teacher, Mrs. Newall.  Some of the kids in the autism classes at Wilson Elementary are non verbal, and some are partially verbal like our Jake.  He is wearing an orange shirt and white plaid shorts.  Click on the link bellow to watch the U-tube video:


Language Unit Students - Upside Down
http://youtu.be/HkeaV5SRq0s   



Mrs. Newall and Mrs. Breeding interviewed for the local news - it was very special.


Enjoy the photos and be proud of our school, devoted special education teachers and principle, our beautiful and sweet Jake and all of the other everyday heroes, worldwide; our children and adults that cope with autism.  We honor those who live with autism during the month of April for autism awareness, and really, awareness is a daily way of living.  We also celebrate our efforts of raising autism awareness.  April 2nd this year was truly a meaningful and memorable day which I will forever treasure! 

Plastic bubble tub in the sensory room with glowing spaghetti strings - kids play inside


Alex Lily and Jake








Jake looking at his dad in uniform, facing the US and Alabama flags and the kids of the school.
Amongst the blue balloons, floats a single white one - a touching moment for me to capture in a photo.




Now this is is cake!!


April 2nd, 2013 - a day which I will forever treasure







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.
 
Visit my other blog: 

Where I display 
my artwork, music compositions and travel photos 

Creationlily

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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Creationlily













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