As we celebrate the legacy of Dr. Martin Luther King and continue to mourn for Nelson Mandela this month, I'm reminded of the power of patience.
Both men bear evidence to the long-suffering nature of advocacy and the concept that systems change slowly. Both men demonstrated that in order to make a change in just about any social justice system, we have to be in it for the long haul.
As parents of and advocates for special needs kids, we are asked every day to tap into that kind of painfully deep patience. As the mother of an autistic teen, I struggle daily alongside other special needs parents to exercise the patience that these two greats demonstrated even in the most dehumanizing circumstances.
The trust they placed in slow change inspires me to keep at it, to shoulder the sacrifices so that we, too, can leave behind a brighter future for our children with developmental disabilities.
If Mandela and King could bring about long-lasting change in the most recalcitrant, most obstinate systems -- including governments designed to discriminate against an entire race of people -- then imagine what we can do for our special needs children if we maintain the same brand of unwavering persistence.
Yes, there will be sacrifices. Yes, there will be pain. Yes, there will be setbacks and frustration. But all will be dwarfed when our quiet determination results in fewer barriers and more resources for all children, including those with disabilities.
For those of us working to let in people who have been locked out, King and Mandela hold the key. Whenever I become discouraged or question whether our approach to chip away at what seems like a mammoth obstacle has purpose or sustainability, I draw encouragement from both men's lives. I turn to their writings and their words and am encouraged to move forward.
"It always seems impossible until it's done," is a favorite from Mandela, one that holds special meaning for me. The Special Needs Network is a grassroots movement fueled by everyday families -- primarily moms, primarily in underserved communities not usually associated with the resources and power that start and sustain such movements.
Yet these everyday moms and parents in these everyday communities have and do exercise the power to control their lives. They come together to join forces and stand together to make their voices heard.
And heard they are -- by policy makers and other leaders who recognize that these children matter, these families matter, their issues matter and they matter all day long.
And suddenly these everyday parents realize -- we all realize -- that the impossible is indeed being done.
King said, "Faith is taking the first step even when you don't see the whole staircase." Watching parents of autistic kids become transformed by the realization that they DO have a say in their child's education and healthcare, in their communities and government is one of the most striking and wonderful things about my advocacy for children with autism. Seeing them empowered with the knowledge that they -- everyday people -- can influence legislation and policy is overwhelming and moving.
They take time away from work, from play, from their families because of their faith in greater autism awareness and fewer struggles for their kids. Though we can't see the entire staircase, we catch glimpses of it in the construction of Los Angeles' first-ever specialized autism medical clinic, the 5,000 toys donated to special needs children during Special Needs Network's recent fundraiser, and the expansion of Network programs to serve more families in California and across the nation.
That grassroots empowerment is what both King and Mandela stood for. The people who marched with them were everyday people who stood together to bring about change. Like King and Mandela, we'll keep taking that next step up the staircase and keep working toward the impossible until it's done.
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When people hear that I have six kids, the reaction is usually entertaining. Sure, there are some days when I wonder what I've gotten myself into, worry about the world they'll inherit and consider the environmental footprint of a family like mine. But most of the time, I just celebrate how awesome it is to have six kids. Here are a few reasons why:
1. It's cheaper.
A couple of years ago when the recession hit, I was interviewed and wrote articles about whether the economic recession would affect my decision to have another child. The short answer was, "No." I don't let little things like common sense, birth control and economic disaster stop me from having babies.
I believe that for the most part, children are as expensive as you make them. Sure, there is that initial cash outlay with the first child, but if you go on to have several children, you are really just getting more bang outta your buck. When I look at our battered bassinet, stained stroller, filthy crib and tired changing table, I feel like we got good value for our dollar. And talk about a good hand-me-down situation in the clothing department! My last couple of babies don't know what new clothes feel like.
I can see that they might get expensive as they start heading off to university, but we've got some sensible savings going and besides, my kids will not be served up a post-secondary education on a platter. Summer jobs and student loans exist for a reason, and I have no problem seeing mine work to earn their educations.
Being able to "afford" children is relative. I can't afford a flashy car, but I can afford six kids. There are people with flashy cars who can't afford another child. Whatever turns your crank.
2. You have nice kids.
People often comment that kids from big families seem "nice." Sure, it's a generalization, but I've got a few theories on this one. One of the reasons they are nice is because it is difficult to spoil them. Certainly there are children from small families who are not spoiled, but spoiling children in large families is nearly impossible. I simply can't (and won't) buy identical high-end expensive toys and gadgets for my kids. Most things they have, they share. I also can't serve them hand and foot. If I fetched each kid a snack every time they were hungry, I'd be fetching snacks all day long. My 6-year-old has been getting her own breakfast for as long as I remember. Older kids might help out the younger ones with a bowl of cereal or glass of juice. The fact is, they are fairly independent and helpful -- and they have to be if they want to have snacks.
So, it would appear that kids who are independent, not materialistic and know how to share seem to be perceived as "nice" by the general population.
3. You're not sleeping, anyway.
Let's face it, when you have small kids, you're already lacking sleep, a social life or even time to sit down to eat. You've been mistaken for a zombie at work, and you never go anywhere without a diaper bag. An overnight trip requires a minivan packed with portacots, strollers and twelve changes of clothes for your baby that spits up. You're already thick into the parenting lifestyle and a couple of extra kids are not going to make that exponentially harder. If you've gone from one kid to two, you've done the hard part. Sure, things can be pretty hairy at times, but for every time a point goes on the "hassle" side, the "this is awesome" side gets 100 points. Those are the kinds of stats I can live with.
4. You have a built-in entertainment system.
I don't hear the words "I'm bored" very often. Mostly because it's like begging for a chore, or perhaps because my kiddos know my response would be, "Only boring people are bored." The reality is, my kids have built-in playmates. Sure, they bicker, but often, they disappear into the basement or outside for hours. No mama entertainment required. I like doing activities with my kids, but the idea of playing Barbie or My Little Pet Shop is enough to make me want to poke my eyes out. My mama friends of singletons report that playing with Barbie well and truly loses its shine once you hit 35. As for my babies, they just happily pass their days being constantly entertained by the fun and antics that surround them.
5. It makes them social.
It just so happens that my eldest child has autism. If you have a child with deficits in communication, social skills and imaginative play, you can see the value of having three little sisters by the age of 5. Those girls have talked to him, engaged him and dragged him into imaginative play as if it were their jobs. He couldn't escape socialization -- eating with them, bathing and sharing a room. Did I have a big family because of his autism? Nope, but the very best thing I've done for this kid is load him up with siblings. My son runs with the pack and my expectations of him are raised because he needs to pull his weight in this family, just like everyone else.
6. Guess who is not going into a retirement home!
That's right. Those six people can take turns passing me around. I might even fake a bit of incontinence as payback for the twelve years of diaper changing. And they should consider themselves lucky -- they won't have three in diapers at once like some of us have.
BONUS REASON: I think these faces speak for themselves.
This piece originally appeared on Modern Mom.
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By: By Bahar Gholipour, Staff Writer
Published: 01/15/2014 11:26 AM EST on LiveScience
The world for children with autism may resemble watching a movie with the audio out of sync. New research shows these children have trouble putting together what they see with what they hear, and that these deficits may underlie their speech and communication problems.
For most people, the signals arriving in the brain from the ears and the eyes within a time window of 100 to 200 milliseconds, are put together, to form one perception. For example, hearing the sound of a word and seeing the movement of lips together creates the perception of a spoken word.
The new study showed that in children with autism, the time window for binding signals together is wider, meaning that the brain integrates events that happened as much as half a second (500 milliseconds) apart, and should have been perceived as separate events, according to the study. The findings are published today (Jan. 14) in the Journal of Neuroscience.
"Children with autism have trouble integrating simultaneous information from their eyes and their ears," said study researcher Stephen Camarata, professor of hearing and speech sciences at Vanderbilt University in Nashville, Tenn. "It is like they are watching a foreign movie that was badly dubbed."
What's more, the researchers found that the wider the time window, the poorer a child's ability to properly bind lip movements to speech — an important mechanism in language learning.
In children with autism, "when audio and visual signals happen during word learning, they don't get linked properly," said Camarata, who works with autistic children on their language and communication skills. "For example, when I point to a cup on my desk and say 'cup', the word gets bound to the image of the cup. But in children with autism, they might be looking at something else, and then the word cup comes and gets bound to the hat they are looking at."
The new study included 32 typical children and 32 high-functioning children with autism, ages 6 to 18. Researchers used simple auditory and visual stimuli, such as flashes and beeps played on a computer, and also more complex environmental stimuli, such as spoken words and a hammer hitting a nail. Scientists asked the participants to say whether the visual and auditory events happened at the same time.
In one set of experiments, the researchers used a sound-induced flash illusion, in which hearing two beeps deceives most people into thinking they saw two flashes when only one flash has appeared on a screen. [See video of the sound-induced flash illusion]
For the illusion to work, the beeps must happen nearly simultaneously with the flash, within a 200-millisecond window. If the beeps and the flash happen further apart, the auditory and visual events remain separated in the mind.
However, "in autism, if the flashes and the beeps are even as far as half a second apart, people may say there are two flashes," Camarata said.
Next, the researchers used another well-known illusion, called the McGurk effect. In this audiovisual illusion, when the visual component of one sound is coupled with the auditory component of another sound, people bind these signals together and perceive a third sound. For example, when an actor says "ga-ga," but the audio dubbed over his voice says "ba-ba," people report hearing "da-da." [10 Things You Didn't Know About the Brain]
In the new study, children with autism were less likely than typical children to bind the information together and report a third sound. Moreover, the poorer their acuity in the first flash-beep task, the lesser was their ability to combine auditory and visual information in the second illusion.
Building blocks of language
Insights from the results may help improve therapies for children with autism who have communication difficulties, the researchers said.
"If we can fix this deficit in early sensory function, then maybe we can see benefits in language and communication and social interactions," said study researcher Mark Wallace, director of the Vanderbilt Brain Institute.
Possible therapies may include training the brain to narrow the binding window, or, when teaching language, presenting the words in a way that they are very salient, Camarata said. "In other words, when I point to my coffee cup, I might do it over and over again, in a clear environment, increasing the chances that the word cup would get bound to the image of the cup," he said.
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NEW YORK (AP) -- Police were investigating whether human remains found along the East River could be those of an autistic teen who walked out of his school more than three months ago and vanished, a law enforcement official said Friday.
A person shooting photos discovered what looked like an arm on Thursday night, said the official with direct knowledge of the case, who was not authorized to speak publicly and spoke to The Associated Press on condition of anonymity.
Police also found a torso and legs in the water, along with a dark-colored shoe and clothing resembling what 14-year-old Avonte Oquendo was wearing when he disappeared, the official said.
At daybreak Friday, police in waders searched the water while a dog sniffed the marshy terrain along the shore. Police were to launch a dive after the shoreline was thoroughly searched.
Avonte has been missing since Oct. 4, the day he walked out of his school toward a park overlooking the East River. His disappearance sparked a search that included hundreds of officers, marine units and volunteers.
Missing person posters were plastered on lampposts and placed on car windshields throughout the city. The teen, who did not speak, was fascinated with the subway system and Metropolitan Transportation Authority officials made announcements on trains for weeks asking for help finding him. Police checked every subway station and tunnel.
Authorities also hunted down hundreds of tips in New York City and suburbs. Despite a few false alarms, including an image of a person snapped on a train that resembled the boy, he has not been located.
Detectives were not sure whether the remains found Thursday belonged to the missing teen. The remains were found at least 11 miles from where he was last seen, considerably upriver and east of the park near Avonte's school.
One investigative theory was that Avonte fell into the river near the school. Although the remains were found upriver, past densely-populated shoreline under the Robert F. Kennedy Bridge and Rikers Island jail, the East River is a tidal strait with strong currents that reverse flow many times a day.
The family's lawyer, David Perecman, said he spoke to Avonte's mother, Vanessa Fontaine, around 2 a.m. He said she was considering the discovery to be just another tip until she hears something more definitive.
Perecman said the family will wait for DNA test results, and police have the teen's father's DNA on file. He confirmed that the jeans and size 5 1/2 sneakers found on the remains resembled what Avonte was wearing when he was last seen. But the remains were badly decomposed.
He said of Fontaine: "This has taken a significant toll on her as a human being."
The remains were taken to the Queens County Morgue and will be examined by the medical examiner's office to determine an identification and cause of death, and that may take several days, police said. Detectives and water units were searching for any additional evidence.
A reward fund for information leading to Avonte's safe return was at least $60,000, including $50,000 from an anonymous donation to the advocacy group Autism Speaks.
Avonte's family has filed a notice of claim saying they planned to sue the city, arguing that school officials allowed him to walk out of the building and waited too long to notify police that he was missing.
Former police commissioner Raymond Kelly had defended the school safety officer who last saw the boy, saying she told him to go back to his classroom and he left the hallway. The city's law department has said the case is "distressing."
Associated Press writers Karen Matthews and Allison Barnwell contributed to this report.
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