October is National Bullying Prevention Month

When my brother was 2 years old, he had a traumatic brain injury. He and my cousins were racing up the steps to the stoop of their apartment building. His accident happened before there were enforced building codes regulating the distance between the spindles on decks or stairs. My cousin reached the door first, threw open the screen door, hitting my brother in the back and knocking him through the spindles, and onto the concrete below.

Because of the accident, he endured countless surgeries, had to wear a helmet, lost partial use of his right hand, and began having epileptic seizures. He was a fighter and with each challenge he prevailed. With every obstacle, he pushed himself harder. There wasn't a day in his life that was easy or carefree, yet he lived life. His life may have been unconventional to some, but it was the life he chose.

There were many occasions when his disability cost him job opportunities. His seizures could sometimes knock him out for days at a time. The medicine he took to control the seizures had side effects that he felt were worse than the aftermath of the seizure. His experiences hardened him a bit. He had a sarcastic personality, but I think that part of the sarcasm was a way for him to beat others to the punch, to ensure the joke was on others and not him. Underneath his sarcastic, and sometimes anti-social personality was a person who loved deeper than many men I have encountered, a man who cared with every ounce of his being, a man that wanted to be accepted.

My brother fought his whole life against those who treated him differently and those that judged him before they knew him. Maybe he was different, maybe he was eclectic, or a loner, but that didn't make him any less human.

My brother, I believe, was a victim of bullying. It caused him to act depressed, to internalize his feelings and to remove himself from social situations. What those people who prejudged him missed out on was a loyal friend. Someone who would have given the shirt off of his back to anyone who asked. A friend that would give his last dollar, if someone else needed it more. A man that would listen to you, give you advice, be a shoulder to cry on, and a friend to laugh with, if they had just given him the opportunity to do so.

October is National Bullying Prevention Month. Did you know that children with special needs are two to three times more likely to be bullied than their "normal" peers? Children with disabilities may be unable to communicate to us that they are being bullied, may not know how to respond to bullies. www.stopbullying.gov highlights the following behaviors as signs there may be a problem with bullying:

• Unexplainable injuries
• Lost or destroyed clothing, books, electronics, or jewelry
• Frequent headaches or stomach aches, feeling sick or faking illness
• Changes in eating habits, like suddenly skipping meals or binge eating. Kids may come home from school hungry because they did not eat lunch.
• Difficulty sleeping or frequent nightmares
• Declining grades, loss of interest in schoolwork, or not wanting to go to school
• Sudden loss of friends or avoidance of social situations
• Feelings of helplessness or decreased self esteem
• Self-destructive behaviors such as running away from home, harming themselves, or talking about suicide

There are laws that protect children with disabilities from bullies through their 504 Plan or IEP, however it is important that if you feel like your child may be a victim of a bully, to review the School District's policy on bullying.

Bullying cannot stop with just one person. It takes the community to ban together to prevent bullies from having the power. We need to continue to reinforce positive behaviors in our children, and teach them to respect one another and not "judge a book by it's cover".

For more information on Bullying Prevention, visit:
www.pacer.org
www.stopbullying.org
www.bullyingprevention.org

Sometimes Routine is Overrated

Mama's Bedtime Battles

Every night C and I read the same book at bedtime, at the same time, while we sit in the same position on the bed. We have been doing this for about a year now, and every night our story gets a bit longer. It started with me reading to him, but as his vocabulary expanded, and he was able to retain the words, he began reading to me. It has been amazing to witness and quite the accomplishment. A few years ago he wasn't able to put words into meaningful phrases, and he grew to the point where he began to "read" to me on a nightly basis.

Fast forward to Monday night. We brushed our teeth, walked upstairs, turned the bathroom light on, walked into C's room, grabbed our book, took our places in bed, and began "Story Time". Monday night however was slightly different than our other nights. Suddenly the animals in our book began to have side stories of mostly jargon, some tangible words, and a lot of "and the... (insert animal)". While on a normal day I would have rejoiced, swung from the rafters in glee, Monday night I was not in the mood for extended story time. With each turn of the page, the one line sentence became a longer and still longer string of intangible/ jargon/ animal words.

Bear with me folks, there is a point...

As we sat and turned pages, and repeated words and phrases, and our 1/2 hour story time turned into 45 minutes, I found myself growing antsy. Suddenly out of no where, the phrase "I ain't got time for this" started to make it's way through my larynx and out of my mouth. Thankfully, my mama filter took charge and swallowed that hideous statement, and then I felt the regurgitation, I knew what was about to slip out and I quickly changed my statement to "Let's turn the page and see what happens next".

It was a hideous mommy moment. All I wanted to do was pour a large glass of wine, plop down on the couch and flip the channels back and forth between Bravo and E!.

Finally, we reached the end of the God Forsaken book, and C proudly proclaimed "And they lived happily ever after, The End". As I kissed my sweet boy goodnight, I felt the tension ease, the anxiety release, and I realized that I too, may be in need of a sensory break.

I was reminded by a very dear friend tonight, that we too are human. We too need time to decompress. Sometimes even the simplest of tasks seem insurmountable, and that is okay. As I write, C is watching Yo Gabba Gabba, and is happy. I am not doing one of the million things I have pinned to the board on Pinterest dedicated to C, I am focusing on me, with a glass of wine, and allowing myself to be okay with the break.

Tonight, I will cherish our bedtime routine, I will bask in the longer bedtime story. When I say "Good night, I love you", C will respond "Lub you" and when I say " Have a good night night", he will say "We will". Tonight I will be at peace, and it will only have a little to do with the fact that I was able to enjoy a glass of wine before bedtime tonight.

Genetics, Environment, and Statistics, Oh My

 A short walk down Blame Me Ln.

A good friend sent an article to me recently, actually she sent it two weeks ago, via email, and like the great friend that I am, I didn't respond! It wasn't because I was too busy, it isn't that I am not interested, it isn't even that I wanted to ignore her, the fact that she sought out this article and took time out of her work day to send it to me, means more than she probably realizes. What she doesn't know, what no one really knows is that I don't want to address the underlying meaning of the article (or my interpretation of the article at least).

The beef of the article is that there is increased evidence that the environment may have a much larger contribution to the rise of Autism Spectrum Disorder diagnosis', than we previously believed. The article, as I interpret it, implicates me as the direct cause of my son's diagnosis. By exposing myself to air pollution, pesticides, even iron, I may have unknowingly played a role in C's diagnosis. I have spent the last two years avoiding this concept. I know that if I even take a short stroll down Blame Me Ln., I am sure to find myself coming back to visit. Maybe just a few short visits at first, but I know that part of me longs to stay, and let's be honest, there is nothing good down that Lane.

Now in saying I don't wish to allow myself to be blamed for whatever I may have exposed myself, and my then, unborn baby to, it does not mean that I am not a full believer that there must be something environmental sparking the surge in Autism Diagnosis' in the last decade. Absolutely there is more information, more awareness, more early intervention, and that may contribute to a percentage of the rise in cases diagnosed, but we would be fools to believe that 20 years ago doctor's were told they may never encounter a child with Autism, and now statistics show that 1 in 50 US children will be diagnosed. There has to be something going on, around us, to us, that is boosting the statistics, don't you think?

After reading this article, allowing myself to briefly feel guilty, I did a quick search on research for the cause of Autism. There were 111,000,000 results. Guess what the common theory is for the cause of Autism... a combination of genetic and environmental components. There is no definitive data that confirms the cause of Autism.

For those, who like me, try at all costs to dodge this topic of conversation simply because of my lack of real data vs. rumor mill information, the lack of a known cause can be considered both a blessing and a curse. I would love to know the cause of Autism, so that it can be prevented in the future, so that no parent has to endure the struggle that goes hand and hand with raising a child on the spectrum. At the same time, I am unsure that I would ever want to "cure" C. If we are able to completely wipe out all his symptoms, habits, tendencies, to conform him to our "norm"... I fear I would lose the essence of the child whom I so dearly adore.

So friends, I for now, will choose blissful ignorance... that is, until someone sends me down Blame Me Ln., yet again, and I take another cold hard look at the why, the what if, and maybe resolve the underlying fear of what the end of that Lane has in store for me, and for my precious family.

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

Evidence continues to mount that environmental exposures prior to pregnancy are contributing to rising autism rates. - See more at: http://www.emagazine.com/daily-news/more-evidence-environment-impacting-autism-risk/#sthash.SXn4Try3.dpuf

A Retrospective View Requires a Great Big Thank You

 The strongest of all warriors are these two -- Time and Patience, Leo Tolstoy War and Peace

Two years ago, almost to the day we received our diagnosis. As many of you know, every detail of that day are engrained permanently in my mind. I can still recall each of my senses, make them tangible, as if I were reliving that moment. I remember the feeling of the sweat trickling down my back as the doctor explained what Autism is and listed the various specialists I should call. I remember A and O sitting in the chairs next to the door trying hard to be patient as I tried to hear what I was being told, wishing that somehow the information could be absorbed via osmosis. I recall the smell of the room, that almost sweet, sickly sweet smell that doctor's offices always have.

How far we have come in those 2 years. It seems like an eternity ago, yet still close enough to know why we have chosen to do what we are doing. We have made sacrifices, on behalf of our entire family, hoping and praying that in the end the sacrifices will be outweighed by the lives we touch, by the depth of love, compassion and understanding we thrive on within our family unit. We certainly will never become rich, by choosing this path. We may not be able to go out on date night dinners with our friends, may not be able to take an impromptu vacation, or buy the trendiest line of clothing, but we hope to look back on all of this, from the rocking chairs on our front porch, and know in our hearts that our decision was the best for our family.

We hope to continue to reach families who have felt our loneliness,  who have felt the despair, who have heard earth shattering news from a doctor, who regardless of the diagnosis, want someone who understands on a personal level, the range of emotions they feel. We hope to be able to expand to neighboring communities and provide support to any and all who want to be included. We hope to collaborate with those who have filled their hearts with a similar mission.

My friends, this path we walk down is long, and hard. We are in it for life. Whether you have a child, a relative, a student, a friend, who is given any diagnosis, it is something that you live with, body and soul. How we move forward, how we receive the information we are given, will help us choose from the many paths laid before us. There is no need to walk down any path alone. Whether you become a part of our community for a brief period of time, or whether you become part of our legacy, you will always be a part of our family.

There is a light at the end of the tunnel. With each new day, with each new experience, we are touched by someone who makes a difference. Some days are harder than others. Some days we question the path we have chosen, and other days we see the light turn on, and suddenly we are given clarity. Even if it is just a brief moment in time, those moments are what we need to hold on to. Those moments provide the momentum to continue pushing forward, pursuing treatments, seeking answers, and providing unconditional love to those in our life who so desperately need it.

We see you, we hear you, we feel your presence. We know that our path may be the longest and the one with the most bumps, but in the end those bumps will have given us the endurance to continue our mission.

Thank you for your continued support, for your kind words, for sharing our story. Slowly we are growing, and we know that great things are on the horizon.

The Wonderful World of Disney

 To go or not to go, that is the question...

The Internet is a buzz regarding the new Disney change in policy for the Guest Assistance Card (GAC) intended for use by those with disablilities. I have seen at least 3 separate blog posts from other mom's who have children with Autism, as well as news reports, google alerts, etc.

Two years ago, abut 2 months after C's diagnosis, we took our family to WDW to celebrate my niece and O's birthdays (they happen to be just 2 days apart). We were new to the wonderful world of Autism, and had no idea that there was such a thing as a "GAC". Gosh, had we known about such a wonderful service, our experience may have been just a bit more magical.

Let's be honest, it is hard to have a bad time in Walt Disney World. We have been 4 times in 6 years and feel as though we have mastered the 14 hour car ride, parks, attractions, rides, and Disney Best Practices. We embrace the Disney Culture year round, never missing a new movie release, staying current on the newest shows on Disney Junior, Disney and even Disney XD.

In the month prior to Disney, we had been to countless doctor's appointments, including specialists, blood tests, etc. and had not received any results prior to our trip. Of course, C was not speaking at the time, and unknowingly, we were just throwing him into the apex of what is the worst case scenario for most on the spectrum; crowds, noise, personal space invasion, large characters that seem so small on screen poking and prodding, lines, noise, people, lines, noise, people... I wish I had known.

While our trip was wonderful, and full of lasting memories, many of those moments were superseded by C's moments of angst. A moment I know is permanently engraved in my brain is our Nemo experience. We couldn't wait to take him on Nemo in Epcot. We watched Finding Nemo on the car ride down to Disney and just knew that he would love every bit of the ride. We parked our stroller in the designated area and into Nemo's tunnel we went. 

Disney is notorious for creating magical spaces for it's guests during the wait to get on a ride. Always in theme, always engaging, but just enough so that the ride remains the main attraction. I just know that Nemo had that same appeal, I knew that if we could focus C on the awesomeness of the exhibits, the rocks, the music, Nemo talking to us, he would and could stop crying. It didn't matter to me that he was curled in my arms in the fetal position and that our line neighbors had begun to question our parental decision making, if C could just focus on all the magic happening inside that dark, enclosed, loud, people filled tunnel, I just knew he would love every second of it. Oh so naive.

Finally, it was our turn to board the ride. My ever patient and understanding O boarded the ride with C and me. Try as I might, C wanted nothing to do with the awesomeness that was the Nemo ride. As soon as our train started to move, he slumped down, like wet spaghetti, on the floor of our car and curled into the fetal position, continuing to scream and cry. And of course, having O in the car with me, I gave myself the mama pep talk. "I will not cry, I will not scream, I will be strong, I will love this ride!" C cried and cried, the poor baby, unable at 3 to tell us why he was upset.

O loved Nemo! He, along with A and his cousins and Aunt and Uncle took a few moments to walk around the small aquarium that meets you at the end of the exhibit.

Kell and I whisked C outside, and there, we cried. We were completely overcome with emotion. We knew nothing of what it meant to have a child with Autism. We were advised in C's early stages to refrain from Google searches, they would only lead us to the worst possible scenario, that the information we researched might not be relevant to C and his particular case. Unfortunately, that advice led us to be completely uneducated and unprepared. We had no clue that being in that type of environment was like feeding our sweet child poison. 

Had we known about the wonderful option of obtaining a "GAC" we could have avoided the whole Nemo incident, and many others that plagued us that trip. We have been planning our next trip to WDW, for spring of 2014. Ready to take on the challenge of showing our son the magic and wonder the parks have to offer, in a way that is sensitive to his needs. With the change in policy, we have seriously reconsidered our trip, and are thankful that we have not yet secured a date.

The press release regarding the policy change and the effective date of the policy change are in such close proximity, Disney cut off the ability to receive feedback, and make appropriate changes that will continue to cater to their customer, while ensuring the proper use of the privilege, prior to the unveiling of "Disabled Assistance System" (proposed new policy, also known as DAS). As of today, 9/24/13 it appears that there have been no changes that I could locate regarding the policy change on the Disney Website. After speaking directly with a customer service representative on the phone, I was told that there is no policy in effect yet, nor is there a policy in writing, for the public to review. She indicated that it is all speculation, however we do know that the current GAC will expire on October 9, 2013, and the proposed DAS is going to be similar to a "Fast Pass" System. Her best advice to me was to simply call back after October 9th, when the new policy is put in place.

For those that are in a wheelchair, that may have a cast, might have a non- sensory related diagnosis, the proposed policy of having guests receive a pass with a time to come back to the ride, in the Fast Pass fashion (and still wait in a line, shorter line maybe, but still wait), I think the policy is acceptable. For my child, who is unable to handle the pressure, the atmosphere, the anxiety of waiting in a line, they have done our population a gross disservice. In addition, was the disabled community conferred with, prior to the policy change? Why not punish those abusing the system, why should my child be stripped of the Disney experience because of the thoughtlessness and selfishness of the abuser?

To those that took advantage of this system... SHAME ON YOU! Money should not be able to buy you everything, and your poor choice, to take advantage of a privilege, has stripped my child and countless others, of an experience that can't be bought. While the GAC system may have had loopholes and flaws, and change may be required, there should be consideration of those that are impacted the most, not an overhaul not something entirely new, but perhaps a fix...

Labor Day Jitters

The First Day of Kindergarten Approaches

We have been working on C's schedule since last January, for this school year. C turned 5 in August, thus making him eligible for Kindergarten. We knew that academically he was not ready for it, but also knew that we would have to, at some point, allow the kid to go to school for a full day.

After many IEP meetings, many tears, Pre-Kindergarten, Kindergarten and Speech evaluations, we were able to create a schedule that will allow C to attend a full day of school, interact with peers his age, all while catering to his academic and behavioral needs.

After all of our hard work, I have had a multitude of emotions, with the most recent being anxiety. This is my last baby to go to school, this is my special child, whom I hold dear to my heart.

He is ready, he needs school, I know in my heart that everything will be fine, but the mama in me can't help but to worry. It is hard to keep the "What if" questions from taking over my every thought. I can't concentrate, I am constantly thinking of things that I should tell his teachers. I even had a fleeting thought of creating a "C Desk Reference" for each of his teachers, to help guide them through all of his nuances. I know it is neurotic, but ultimately it is my fear of giving up control for 6 hours of his sweet life that really has me on edge.

So rather then allow the impending "First Day of School" to completely overtake me, I decided to write this:

Ode to the New School Year

The summer is ending
The school year is near
New transitions, new school
New teachers, new fear

We've worked hard all summer
To keep the brain fit
We've had play-dates, and field trips
Practiced our
numbers a bit

Mama is scared
of the new things to come
But I know little man
Will be the brave one

A bittersweet day
For this mama of three
Off to school they all go
And what's left is just me

**As a side, I would like to thank the staff at our home elementary school for their hard work, patience, understanding, sensitivity, exemplary communication, and compassion for C and my family. Kudos to the staff and administration, and many many thanks!!