5 Year Anniversary

5 Year Anniversary

5 years ago I made the decision to start a non profit, because there was a lack of initiatives from large organizations in underserved communities. It's been 5 years and sadly not much has changed. There is still a huge disparity in African American, Latino, Asian, and the Poor in the fight against Autism Spectrum Disorder.

It's Mid-March and like every year I'm getting a huge influx of invites to Autism Galas, Conventions, Walks, and etc. Every year I look at the panel list for many of these events and I very rarely see a person of color. Can I tell you...I get a little irritated by this because, I'm never contacted about participating or partnering. But I'm not alone there are many other organizations like mine who never seem to get approached either. So, imagine my raised eyebrow when a certain national organization began an ad campaign in the African American Community with the tag line "autism  doesn't discriminate"... Hmm that sounds really familiar...Oh yes that's right because it's been the COA's tag line for 5 years. In 2010 I created a mailer to 100 plus African American Churches in the US regarding a partnership to enlighten their parishioners about autism. Out of that 100 plus I received only two responses. In 2013, the previously referred to organization lit it up Blue with the Black Church Initiative, and of course more than two churches responded to them.

Now, your sensing some sarcasm and hostility and your right.  Because helping to bridge the disparity is much more than a billboard, a celebrity, and a exhibitor booth. The only way to make a real difference is to engage people that are actually making a difference in their communities in the fight against Autism.  There are a handful of us, but we are making a difference slowly. Our impact could be greater if we had a greater reach and a national partnership would do that. 

You've probably figured who the "Big Organization" is. This isn't so much about bashing them as much as it is me growing tired of them jumping on the bandwagon and spring boarding off others initiatives rather than engagement. But I'm also going to need Celebrities of Color to stop blindly endorsing organizations that have no initiatives in their communities. I'm going to need folks to stop signing up for walks,  for organizations that aren't walking through your community. Don't just think because you see a famous musician,actress,or sports figure on a billboard or TV ad, that they are helping the underserved. The only way communities of color and make strides against autism is actual programs to help them flourish.

Even though this blog rant makes me sound like cranky mccrankerson. I really have to thank The National Autism Association for their efforts to find Avonte Oquendo and for pushing for Wandering legislation. They realize that so much more needs to be done! And They're RIGHT!

If you or someone you know wants to make a difference in underserved communities visit www.thecolorofautism.org

#autism #nationalautismassciation #africanamerican #blackchurch #community

Wandering Preventon at Home

My Son (pictured)

Avonte Oquendo's death was a horrible tragedy! I'm still reeling from the utter mishandling of his disappearance, something I previously wrote about. Today I'd like to provide some tips about what you can do at home to secure your child with Elopement Tendencies.

1. Have really good keyed on both sides Deadbolt Locks installed on your entry and exit doors. A keyed on both sides deadbolt will not only secure your home, but your child too.
2. Purchase door and window sensors for anything that can be perceived as an exit. An alarm will sound each time door is opened or closed. In advance it will take some getting use to but it's a minor annoyance, but well worth it.
3. Get your children enrolled in swimming lessons. Did you know that many instances of wandering have ended in drownings.
4. Download and begin using your Big Red Safety Toolkit today. http://nationalautismassociation.org/resources/awaare-wandering/

My son on has gotten away from us a couple of times and it was the scarriest 5 minutes of my life. We've implemented all the things that I mentioned and I hope our measures keep him safe.

Autism and Wandering

As a community we are heartbroken over the death of Avonte Oquendo. We would like to take the time to share The National Autism Associations Safety Website, in hopes it will help prevent another tragedy from happening.
http://www.autismsafety.org/wandering.php

Dear Avonte

Dear Avonte,

I'm so sorry that the system failed you! I'm sorry that sometimes requiring people to commit to protecting children like you, is a task that many are failing miserably at. I'm sorry that Vanessa Fontaine & Danny Oquendo SR your parents will never be able to hold you close and shower you with affection.

There is no teachable moment when it comes to your death, because protocols and systems were in place to prevent you from wandering. You young man were never supposed to make it off your school grounds. You were a sweet young man that was loved by so many, including myself. As I pledge my Love to you I promise you, that I will fight to prevent this from ever happening again! Those who allowed you to slip away will be held accountable!..I promise you....I promise you!

Rest In Peace Avonte

The Demonization of Autism

In December 2012 I looked on in horror as the news reported the Sandy Hook tragedy. Tears streamed down my face as the reports of the tiny little lives lost and their selfless educators. Adam Lanza a young man on the Autism Spectrum was the killer, and suddenly Autism Made him do it. I made a Facebook comment about the babies being killed and someone commented that "He killed his mom too", and my knee jerk reaction was...Yeah but there's a story behind that.  I made so many people mad, and guess what...The story was she had an arsenal of damn guns at the house with an emotionally fragile boy. On top of that she taught him how to shoot the guns. Who does that?

Now in advance I know I sound terribly insensitive, but as a parent I'm ultimately responsible for my child's behavior. As a mom I socially bare the blame...Why? Because nobody ever says "Where's your Dad?" It's always "Where's your Mom". What should be said is "Where's your Parents". Very rarely do I find fault with the victim, but keeping a house full of guns just goes beyond my realm of comprehension. So, for me blaming Autism, just doesn't work! Before you question my logic here, no I don't blame every parent for every action their child makes. Sometimes no matter what our efforts are, the outcomes are less than great.

Fast Forward to January 2014  I read that Peter Lanza The father of Adam is turning over his son's treatment records. My feeling are very mixed about this because on the one hand looking into Adam's world may provide some answers to what he did. On the other hand I wonder is this an attempt to blame his actions on Autism Spectrum Disorder? Quite frankly the latter doesn't sit well with me. Ultimately no matter what those records say in my mind there was no reason for that many firearms to be in that house. Guns killed the victims of Sandy Hook not Autism.

http://www.courant.com/news/connecticut/hc-sandy-hook-autism-0118-20140118,0,5438287.story

I'm sorry if I offended anyone.

Sunday

I'm not a religious person, but I have a very strong belief in God. I long wondered why my son had autism? What caused it? What did I do? Why did I do that and etc. Eventually I had to realize that my son has autism because, he just does! It's quite possible that it's the way it's suppose to be.

If my son wasn't on the spectrum, I most certainly wouldn't be an advocate. While I've always had a very soft spot for people with special needs. I doubt if I ever would have started a non-profit. Maybe this is God's way of reminding me, that I need to be a Good Fellow?

Now am I saying I'm fully in acceptance of my son's disorder? No, but I spend a lot less time feeling guilty and more time loving my son!

Remember The Golden Rule

Remember The Golden Rule
First, Care for Yourself

 

On an airplane, an oxygen mask descends in front of you. What do you do? As we all know, the first rule is to put on your own oxygen mask before you assist anyone else. Only when we first help ourselves can we effectively help others. Caring for yourself is one of the most important—and one of the most often forgotten—things you can do as a caregiver. When your needs are taken care of, the person you care for will benefit, too.

Not too long ago I was absorbed in all things Autism, to the point that I'd forsaken my own health. I had extremely high blood pressure and had a series of small strokes, developed GERD, clinically depressed and ballooned to 308 pds. Question? Who do you think I was able to help? Anybody? Bueller? Last January I rang in the New Year in a hospital bed. As I welcomed in 2013, I decided to adopt a new way of life, because in the condition I was in....I couldn't help myself let alone my autistic son.

2013 became the year of Camille! I adopted a healthier lifestyle, which included some of the advice I've been passing out to others for years. I began what I call the "Camille Purge". Because I knew that my health and wellness is closely related to my son's. How is a fat out of shape woman who looks like a Weeble Wooble, going to chase a 7 year old who likes to take unannounced leisurely walks, wanders, and has bolting tendencies?

So I've said all of this to ultimate say as parents we can't take care of our children if we aren't taking care of ourselves. It's not selfish of you to live well and be well! And lets be honest...Do you really think anyone else can take better care of your child than you? So, if you're out for the count whadayyah think is gonna happen...lol!

Be Well!

P.S
I shed 110 pds, still more to lose.