A day in the life of a single mom raising a teenager and a child with autism. I believe that it's not what we receive, but what we give away that defines us. I want to give away all that I have learned and experienced in hopes that it will help families raising a child with autism or any disability. This is my candid journal where I open up my world and share my joys, knowledge, lessons, disappointments, challenges, frustrations, fears and successes - one day at a time.
My first day of Operation Introduction. I introduced Nick to 2 new neighbors and that was very cool. The day ended with my spotting a police cruiser driving down our street (a rare sight on our dead end street) and my running out the door, waving it down asking if I could introduce them to my son. They stopped and were very polite, but their answers to my questions may surprise you.
Me: Hi. Is this the area you usually patrol?
Me: Great. I would like to introduce you to my special needs son just in case you run into him one day. Do you have a moment?
I went in the house, got Nick and brought him down to the police car
Me: Nick these are the police. Officer, what is your name?
Officer: Hi I'm John, what's your name?
Nick: Nick Jones
Officer: Nice to meet you.
Nick then just stands there, hugging me, not paying much attention.
Me: Thank you for stopping. It's very important to me that you know him, should you ever encounter him in the community. It's not likely that he would be on his own, but he could wander.
Me: Have you been fortunate enough to get any training as it relates to engaging our teen children in the community?
Officer: Nope, they have trained us in how to deal with mental illness in general.
Me: Thinking to myself, YIKES, I just looked at him uncertain of my next response, while Nick hugged me and twisted the end of his belt between his thumb and forefinger.
Officer: We do have a protocol. I understand that these kids may not be "listening" to us.
Me: I just want as many people in this area to be aware of him, so should he ever be out on his own he's safe, because he will never respond the way you need him to.
My son would not respond to this command!
Officer: We are trained to do what needs to be done to restrain the individual so they do not harm anyone or themselves.
Me: As a mom I'm concerned because, it's not that my son or another person may not be listening as much as it is that they don't comprehend the command or why it's critical at that moment. My son does not have any idea what would happen if you yelled "Put your hands up", so he wouldn't do it. He's more likely to do what he's doing now - I looked down to see Nick playing with his belt - and you might think he's reaching for a gun. That's what happened to a young man with autism who got shot downtown a few years ago.
Officer: Those situations you hear about young men being shot are because they have a gun, a knife, a sword or a toy that looks to be dangerous.
Officer: Hey Nick, nice to meet you.
Me: Thank you officer for listening and keeping an eye out for our kids.
This is how I interpreted our conversation:
The police in my area are not familiar with how people with Autism may respond in a given situation, and they are going to restrain, shoot or do whatever they deem necessary, because that's what they HAVE been trained to do.
The good news is, who's to say Officer John didn't hear or see something today that increased his awareness that may help someone's child.
Saving the life of a person with ASD starts with us, which includes me. Today I'm going to build a safety net for Nick in my community. I'm calling it Operation Introduction. It's simple,I am going to find someone new to introduce my special someone with ASD to in my community every day! If I'm out with Nick, someone new is going to meet him and know he's a person, a person worth caring about, worth being aware of!
If you're inspired to join in Post, Video, Blog, Tweet OPERATION INTRODUCTION and let's see what we can do.
"I live in fear of the reality, that should my 16 year old son encounter the police, statistically he will end up brutalized or dead.
I'm scared to death at how easily my son could be killed by police. As a young black man he's in danger because statistically the police are already looking for him, many don't value his life and are suspicious of his every move. I live in fear of the reality, that should my 16 year old son encounter the police, he will end up brutalized or dead.
He is in danger because of how he looks and because his diagnosis makes it impossible for him to respond typically in social situations. When a stranger, even a police officer yells, "STOP" or "GET ON THE GROUND" or "PUT YOUR HANDS UP" Nick's not going to get it - which will be interpreted by police as defiance, which will be met with violence, potentially lethal violence.
Nick could just be walking down the street, sitting in a car, looking at toys in the baby section, talking to himself in the park and all it would talk would be for a police officer to think he looks suspicious, or have gotten a call about a crime committed by a person described as "a black male in jeans a T-shirt" and my son could easily end up dead. My son would not respond typically to their verbal commands, he might begin making sudden movements or even run (not from them, just because he runs) triggering a message in the the officers mind that he's a threat, and it's over. My innocent son is the victim of a violent crime committed by those we relied on to protect him.
Our sons with ASD and the Police are dangerous mix, no matter what color or neighborhood you live in. Yes, our African American and Hispanic boys are statistically in the most danger, and they're not the only ones in danger all of our boys are. We have to move toward policy change in the country when it comes to policing, to protect our kids, our communities and the police who are on the job for the right reasons doing the right thing.
The hope for our children is police reform and community awareness. Please let's all introduce our kids to as many people in our neighborhood as we can - a stranger may save their life.
T'was the night of Thanksgiving, but I just couldn't sleep. I tried counting backwards, I tried counting sheep. The leftovers beckoned, the dark meat and white.....but I fought the temptation, with all of my might. Tossing and turning, with anticipation,...the thought of a snack became infatuation. So I raced to the kitchen, flung open the door, and gazed at the fridge, full of goodies galore. I gobbled up turkey, buttered potatoes, pumpkin pie and more. I felt myself swelling, so plump and so round. 'til all of a sudden, I rose off the ground. I crashed through the ceiling, floating into the sky, with a mouthful of pudding, and a handful of pie. I managed to yell as I soared past the trees...Happy Eating To All & Pass The Cranberries, Please!! May your stuffing be tasty. May your turkey be plump. May your potatoes and gravy have nary a lump. May your yams be delicious, may your pies take the prize and may your Thanksgiving dinner stay off of your thighs!
So now Jerry doesn't have Autism, okay. Maybe he doesn't, maybe he was just being funny and crossed the line into careless. Maybe he wasn't prepared for how strongly folks would react and doesn't want to be the new autism poster boy, or he's feeling trapped associated with a diagnosis that still carries lots of negative social stigma. Whatever the case he should be more careful with what he says in the future, and given this experience he may want to continue his journey and get a better understanding of what he called the "autism markers". Based on what I'm observing, we may hear from him again :)
After telling Brian Williams earlier this month that he thought he was on the autism "spectrum," Jerry Seinfeld is now backtracking a bit.
"I don't have autism. I'm not on the spectrum," Jerry Seinfeld tells Billy Bush in an Access Hollywood interview. "I just was watching a play about it and thought, 'Why am I relating?' I related to it on some level. That's all I was saying."
Seinfeld spoke about "markers" to Williams, saying, "You know, never paying attention to the right things. Basic social engagement is really a struggle."
Bush asked about Seinfeld and being social.
Seinfeld says he thinks it's something comedians have in common.
"All the comedians we've had on Comedians in Cars I ask them, 'Do you have trouble talking to regular people?' And they always say yes." He added, "Comedians never talk about normal things. They don't talk about the weather and how you're doing. They're always talking about something weird."
Jerry Seinfeld said Thursday that he believes he may be on the autism "spectrum." "I think, on a very drawn-out scale, I think I'm on the spectrum," he told NBC's Brian Williams. "But I don't see it as dysfunctional. I just think of it as an alternate mindset," he continued. (Photo: Bryan Bedder, Getty Images for NRDC)
Fourteen new individual lawsuits were filed this week against Walt Disney Parks and Resorts for violations of the Americans With Disabilities Act. “The systems, policies and procedures associated with the Disability Access Service which Disney rolled out in October of 2013 were certain to create discrimination against Plaintiffs, and it was obvious that the community of persons with cognitive impairments would be harmed by the DAS,” said the filings in federal court in Florida (read one of them here). Representing 26 families with children with autism and other developmental disorders who visited Disney World, these latest complaints come out of an order late last month by a judge breaking up the group discrimination case against the House of Mouse first filed in April. The filings this week were one per family, as designated by U.S. District Judge Anne C. Conaway.
I've been following the updates, and reading the public comments to this case. A lot of people feel families are unjustified in their complaints and here's a few comments I've found. How do you feel? Let me know!
Since so many of us are home helping our kids, and we have spent so much time learning how to navigate the health care system, this might be a way to put that skill to work and make a few extra dollars. This was emailed to me from a reliable source, so what the heck it's worth a peek!
Become a CEC, Certified Enrollment Counselor and help people understand their options within the Covered Ca health care system.
The Center for Disease Control reports that one in 68 children in the U.S. will have autism. That number jumps to 1 in 42 if we’re just talking about boys. And the risk increases if you already a have a child with autism. In West Virginia, new research is underway to try to get at how the autistic mind ticks.
Paula Webster at the Center for Neuroscience at WVU.
Credit West Virginia University
Paula Webster is a neuroscience graduate who works in the Department of Neurobiology and Anatomy at the Center for Neuroscience at West Virginia University.
While a psychology major at Wheeling Jesuit University, Webster discovered her three-year-old son was on the Autism Spectrum. She became a therapist who practiced applied behavioral analysis (ABA). But Webster wants to know more than how to intervene after diagnosis.
This is the first biomedical research into autism at the university. The study hopes to incorporate subjects in a wide range of ages—children through adults.
Webster works with Assistant Professor at WVU James Lewis, a neuroscientist. They taking and studying images of the brains of people with and without autism performing certain tasks.
The research isn’t just focused on what parts of the brain kids and adults with autism use, but also how they process information. It’s clear, said Webster, that there are many with autism who compensate to accomplish tasks. She hopes that by imaging high-functioning individuals with autism she may be able to start to characterize some of the methods of compensation they’re using.
Webster speculates it may be those mechanisms that allow them to be high-functioning.
“I think we can get at trying to characterize some of those compensatory mechanisms a little bit better,” Webster said, “and correlate those with sub-scores of autism scores to try to get some sub-types of autism.”
Webster hopes the research will go towards influencing the various therapies that exist as well as possibly providing a way to diagnose autism earlier, which in and of itself would be a powerful tool to help abate the condition.
There are so many things I like about this story, not the least of which is I know music helps our kids! Since the goal with many of our kids is to create new connections in the brain, and the part of the brain that processes music, & singing is different from the part of the brain that processes speech, I've been pushing music on Nicky for years. He loves music, he likes to sing his favorite songs (with prompting) which makes music a fun and easy educational tool. I have also learned Nick has favorite songs, which is exciting all by itself. Bottom line, music is great for him and for me :) Yippee! I'm thinking it will help with math too...well I'm praying!
BTW - anything that works on brain trauma patients has potential to help our kids who need to build new connections in the brain. Music is just one of those tools.
Piano Helps Siblings With Autism to Mature, Find Their Voices
Justin Brown and his sister Serena didn’t benefit much from traditional therapies to help autistic children. But when they were 8 and 7 years-old, they met Rutgers University instructor Karen Kowalski who teaches piano to kids with special needs.
“I’ve seen my children mature and grow,” said Monica Brown of the alternative therapy. “They’re much more open and much more focused.”
Justin, who was previously mute, has found his voice through music: “I love how music is comforting, because there are some parts of the piece that are happy. That’s when I smile.”
“Piano brought my children back to me,” says the grateful mom from Somerset, New Jersey.