Ferguson

Since my son w/autism may never fully understand the concept of yielding. I will create a bulletproof suit that I will attach stickers that say "Autistic May Not Yield". While my comment may come off as sarcastic...I'm serious!  I work hard with my son everyday, but I still fear that he'll one day be faced with the task of yielding and may fail.

Halloween

Well it's that time of year again Halloween. We've had an interesting 8 years I must say.
Over the years my son has gone from thinking Halloween was a go visit people game where you ring the doorbell and bolt into someone's home...To ringing their bell and flashing a magnetic smile and saying nothing.

Now I can't say that our journey has gone without planking and noncooperation. It has indeed at times been a bit trying for Ari as he's gone through is various stages of what I call his "Autism Development". Last year we faced a separation issue where he decided he didn't like strange houses, this after years of telling him he can't force himself into people's houses to sit on their couch. This year we created a social story and hopefully he now understands that when he rings the doorbell, I'm not got going to leave him. So, I have no idea what's in store for us this Friday?  We took a test run at a chamber of commerce function today for little goblins and he muttered "going home going home", that is until he saw they were passing out Skittles.  Crossing my fingers for this Friday...lol!

For those of you who can relate to this story here's a links to Social Stories that you may find helpful.

http://www.speechandlanguagekids.com/halloween-social-story/

http://www.abilitypath.org/love-laugh--live/family-fun/halloween-social.pdf

http://www.ccsd.edu/files/filesystem/Going%20Trick%20or%20Treating.pdf

Remembering Avonte Oquendo

On Oct. 4, 2013, Avonte Oquendo ran out of Center Boulevard School in Long Island City, setting off a massive search that included subway tunnels and regular announcements over the public-address system at subway stations. His remains were found in the East River in January, several miles from where he vanished. It’s been 1 years since this tragedy and while there has been changes no charges has been filed against the school for allowing this to happen. Even worse “Avonte’s Law” won’t be implemented until May 2015.

http://www.ny1.com/content/news/216653/avonte-oquendo-disappearance-commemorated-with-vigil/

*Just before Avonte’s disappearance in September 2013 a Metro Detroit Teen went missing for two weeks before he was found alive 20 miles from his residence.

http://detroit.cbslocal.com/2013/09/11/missing-autistic-teen-reunited-with-family/

*On September 8, 2014 a six year old autistic child wandered into the Hudson River. Thankfully and yet tragically 40-year-old Boyce “Scoop” Coleman went to his rescue. Boyce Coleman and another man jumped in to save the boy. Little Stephen was rescued but Coleman drowned in the process.

http://newyork.cbslocal.com/2014/09/08/investigation-continues-after-yonkers-man-dies-trying-to-rescue-child-in-hudson-river/

*On October 1, 2014 Tijuani Rhomane Stone, 24, Missing Man With Autism, Located After Five-Day Search.

http://www.nbcwashington.com/news/local/Tijuani-Rhomane-Stone-24-Missing-Since-Thursday-277596671.html

Wandering is very common among persons on the Autism Spectrum. Whether your child is on the spectrum or not, it’s important to be able to identify the warning signs in order to prevent tragedies. I think the best way to remember Avonte is to become more informed. So when a local community group is offering first responder training make a call to your local schools, police precincts, and fire stations, and find out if they will be attending? If the answer is no tell them they should! Then in the spirit of being proactive pick up the phone and register to take the training yourself.

Ask your school district about what plans they have put in place to protect persons with special needs who wander. Sit down with your family and develop a plan on how to keep your home secure and also complete a profile on your loved one in case of disappearance. Having a profile ensure quick distribution of your child’s stats and could save them. Take a trip to your local hardware or big box store and purchase door and window sensors that will alert you when a door or window is opened.  You can also download this app http://www.fbi.gov/news/stories/2011/august/child_080511

*Warning Over used term headed your way*

At the end of the day ALL Children need to be protected and safe. If you live in an urban environment and you know what response times are and etc...Why not be proactive. Being Proactive shows the depths of your concern and creates an advocacy for change.

Lastly use this hastag #wewillprotectasd to show your commitment to keeping children safe.

Detroit, Why Autism Should Be a Priority For You.

About a year ago I relocated back to Detroit from Atlanta. I returned just after "The Great Autism Bill" was being put into effect. I was so optimistic in regards to how this bill would change things in under represented neighborhoods. A year has passed and while I think that many are being served, I see a great disparity when it comes to the accessibility of care. Many of the ASD service providers are in the suburbs and even with Medicaid taxis it's difficult for families to commit to therapy.

Education of Caregivers in the inner city is very lacking. The buy in just isn't there because parent training is set up as a mandate as opposed to what it really is...Their child's survival! Everyone keeps putting lipstick on "the pig" and passing out the Sinclair James "woo woo woo". Then along comes me an advocate for 5 1/2 years trying to provide much needed services to the underserved. I'm in the community and I'm working hard at getting them access to services and the training they need through my foundation The Color of Autism. I've applied for grant funding and crowd funding contests, and have kinda fallen flat. Recently, I received what I call a Dear John email from a large company that owns virtually everything in Detroit that basically said "Good Luck With That" and a nice no m'am at the end.

Here's a reality that needs to be stated:

In order for families in underserved communities to flourish, you have to provide the right outreach. You have to become a trusted partner and get a buy in. But how are you going to get a buy in when families have to travel 30 minutes or more outside their neighborhoods to get therapy.  Many home providers won't even travel into the inner city. Therapy services need to be localized and accessible and most importantly genuine.Yes I said genuine! Sometimes you just have to tell folks like it is! The reality of Autism in the underserved populous is pretty bleak without therapy services. You have to have very keen relationship building skills in order to deliver a message that will resonate. You have to understand the nature and root of the parent anxiety and unless you've lived it a white paper from Psychology Today ain't gonna cut it. You have to understand the cultural shame of what having something that resembles crazy carries...Yes I said crazy! In underserved communities mental illness and disorders of the brain is shameful to many. So shameful that some would forgo treatment all together.*sidebar* Has the closing of the Lafayette Clinic taught us nothing? Being called Bad sounds alot better than Autistic and we all know what happens to all the bad kids. How many people on the Autism Spectrum do you think are in the prison system? Lemme answer that for you...Quite a Few. How many children on the spectrum have been abused because of overwhelmed and untrained parents?

The Color of Autism Foundation is the connecting thread for families affected by ASD living in Detroit. Be honest out of all the Autism foundations, how many are actually in the City supporting families. There is nobody speaking or walking down Linwood advocating for families with children on the spectrum.  We deliver services to families, because without a strong foundation these children will not flourish. While my rant sounds cranky, I can assure you that I'm vetted to insuring that all children on the spectrum receive the care they need. The Color of Autism wants to end the disparity of care. The Color of Autism Foundation is a 501c3 that needs your support!

If this sounds like something you'd be interested in donating your time to, please email me at info@thecolorofautism.org.

Visit us: www.thecolorofautism.org
https://www.crowdrise.com/thecolorofautism-risedetroit/fundraiser/colorofautismfoundat


Kindest Regards,

Camille

Who's Protecting Our Kids?

#bully Does everyone remember when we were outraged about this (Cough Cough...Well some of us *look to left...then right* ) :
http://www.cbsnews.com/news/california-dad-attacks-boy-accused-of-bullying-his-autistic-son/
In advance I'm not condoning what this man did, but I most certainly understand!

Lately, the news has been filled with stories about crimes committed against our kids. A young man being assaulted in Florida and a teen being tricked into an ice bucket prank. The list goes on and on, and these are the ones that made the nightly news. I mean seriously I just can't wrap my mind around someone dumping a bucket of feces on a kid...A kid who wanted nothing more than for someone to accept him. It infuriates me that it took 2 weeks and Drew Carey's wallet for the culprits to be found.

What's so alarming to me is that our children are so vulnerable and that society doesn't really seem to give a Merry X-Mas about them. I mean come on how hard is it to teach your child to do the right thing? How hard is it to point out that when you see someone that is struggling to help them...Not kick them! When I was a kid back when the dinosaurs walked, I wouldn't even think of doing half the stuff these lil hooligans are out doing. Heck I had to be in the house when the street lights came on.  I know that parenting is harder now than it was back in the day...I get that! For us parents with children on the spectrum it's even harder because not only are we spending sleepless nights worrying about our babies. We have to worry about other people and what they may or may not be inclined to do.

I dunno folks...I dunno? What I do know is if someone does something to my son don't be surprised if you see a pudgy little black woman on the evening news. I hope to G-D that things never come to this! What I will do to protect myself, Mr. Hurd, and You is continue to educate and engage communities to gain a better understanding of Autism Spectrum Disorder. More importantly I want people to just be good!

Please always act within the lines of the Law.

CDC Whistle Blower My Unpopular Opinion

You know since the uncovering of the CDC Whistle Blower I've been bombarded with emails about the matter. Do I believe that the government withheld information, lied, tricked us, and bamboozled us...Absolutely! Below is my unpopular opinion:

I find it a bit concerning that African American Children's well being is at the forefront of this cover up. A cover up that's being compared to the Tuskegee Experiment in an attempt to get AA community angry, riled and ready to battle. We should be angry, mad, furious, riled, and ready to fight. But out of all the people tweeting, facebooking, and calls for action. Has anyone mentioned a plan to help the AA victims of this atrocity? Because if you want to use us at the forefront of your battle, one would think you'd also want to demand healing and disclosure? I have read posts and tweet after tweet and not one has eluded to how we can help the victims. I know I'm being snarky, but African Americans need to be really careful about pushing an agenda that involves us that doesn't have a plan to heal us. Please don't misunderstand I want all children healed from Autism, not just AA children. I'm very confident that the cover up is far reaching and has harmed millions of children. I have a deep appreciation for advocates of all children, so please don't think I don't. I'm just saying don't use conspiracy and scare tactics to on board a community without a plan to heal them.

I think the Whistle Blower battle is important, because the Government needs a reminder every now and again that they aren't G-D.  They need to be held accountable and the CDC Whistle Blower Fight may lead to change. The end result may lead to better practices at the CDC, and if that's the result I give my thanks in advance. This is a fight I will be watching from the sidelines because unfortunately I have more pressing issues. I have to worry about my son growing up to be a moving gun range target. 

Whoops :(

This morning I did as I do every Sunday, I was snuggled on my couch watching Melissa Harris-Perry. Melissa and her panel discussed a number of important topics, yet one story brought me to tears. It was this story of mistaken identity which lead the police to pull over an innocent woman and her children, which shook me. To fully understand this you have to view the video and then comeback to my blog.

So here are the facts:

A 911 call came in to The Forney Texas Police about four black men on the road waving a gun out the window of a beige or tan colored Toyota. So they start in Hot Pursuit of the perps. One problem...
They pulled over a burgundy Nissan Maxima with four little kids and a mother, then held them at gunpoint.

Apparently Roscoe P. Coltrane and the gang are color blind, because last I checked burgundy and tan look nothing alike. I mean come on we've all had that moment when we've squinted at midnight blue -vs- black. I don't know too many people would get tan and burgundy mixed up...SIGH!

Mom: "What is wrong? My kids!"
Officer: "How old are they?"
Mom: "They're six and eight and ten, nine. What are we doing?"
Officer: "Hold on a second, okay?"
Mom: "What is going on? Oh my God, you will terrify my children."
Officer: "We got a complaint of a vehicle matching your description and your license plate, waving a gun out the window."

Then the scared to death innocent child gets out the car in the assuming position of all black men..."With His Hands Up" As his siblings screams hysterically in the car. The the cops attempt to calm the tots after realizing they made a mistake.

Officer: "Ya'll okay? Just ya'll in the car?"
Child: "No I'm scared."
Officer: "It's okay."
Child: "No, are we going to jail?"
Officer: "No. No one is going to jail."
Child: (Scream, crying)

Officer: "Hey, stop crying. It's okay. It's okay. Everything's fine now."

The image of that baby getting out of the car with his hands up brought me to tears! I thought to myself what if that had been me?  If I was pulled over jerked around and handcuffed, my 8 year old son would have gotten out of the car...But he wouldn't of had his hands up. My son would have exited the car charging at whomever was harming his mummy! In my sons world he can't comprehend how to pull in his emotions or yield like the young boy in the video. My son has autism and all he would see is someone hurting me, and he would react. All I could see was my son charging at the cops and bullets going into his chest. For those who say I'm reaching, I challenge you to talk to any African American mom with a child on the spectrum and see if her answer differs.

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.

Discipline

Discipline and Autism

 

 

Too often parents make the mistake of not disciplining. For instance my son is typical in many ways and delayed in others. In the mischief department I'd say he's right up their with his typical peers. I like to say that my son is selectively autistic...LOL! So, when he commits typical offenses, he gets typical disciplines like; time out, no ipad, kurio, and etc.

 

In my opinion it's very important to treat your special needs child as you would your typical child.  I recently encountered a mom who allowed her 5 year old on the spectrum terrorize his siblings. I'm talking hitting, biting, and any of brat behavior...Yes I said BRAT! The siblings were miserable and the 5 year old was happy as a clam. The mom claimed that the child didn't understand and that everyone needed to conform to his world. Grrrr? So, you just let him have his way? She said yes, because autism causes him to not understand. I asked if she let her other kids get away with this sort of behavior and she said no. I said so can you tell me again why he gets to act like this? She said he gets upset when he can't have his way. Then I said SO DOES EVERY OTHER KID!

 

Autism is many things but it doesn't eliminate the ability to know right from wrong. As parents surfing the spectrum it's important for us to instill right and wrong. You want your child to be considerate of others, so that they can be considerate of them. There is so much baggage associated with autism, so don't throw another suitcase on the pile by allowing mayhem all under the guise of "He doesn't understand". The reality is "He Understands More Than You Know". When this sort of behavior is taken into the "typical world" the outcome can be not so great. In the outside world most people don't delve any further than what they see on the exterior. And when they see a kid doing something inappropriate...Most only see a kid doing something inappropriate and not a child with Autism.

 

Blog launch

I decided in 2014, I would blog. I've taken a wack at this before and I didn't really stick with it. Maybe it's because my brain was so consumed with various things that blogging just seemed like one more thing to add to my list.

I must warn you all my typing sucks, my grammer is bad, my sarcasm is ever present, and I often say what other people are thinking. if you can look past all of that I'd like to invite you to follow me.

This blog will chronicle my ups, downs and observations as a parent of a child on the Autism Spectrum.