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"For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil,
to give you a future and a hope." Jeremiah 29:11 (NKJV)

Sharing resources, research, ideas, inspiring scripture, success stories and even failures...

Tuesday, March 27, 2012

Video on Training First Responders

Hi everyone!

Here is a video from NBC's Today Show about firefighters being trained on how to respond when faced with an emergency with an individual with ASD. Spearheaded by a dad... get your tissues!



Transcript (edited) is below:

Dad trains firemen to rescue people with autism

Longtime firefighter Bill Canatta is committed to caring for his 21-year-old son Ted, who is living with autism. Bill teaches people across the country how to rescue other people with the condition, and his training helped one first responder save a boy’s life. TODAY’s Amy Robach reports. 

With a program that aims to demystify autism for a very important group of people, "Today" national correspondent, Amy Robach, is here to explain.
"When it comes to an emergency, time is critical. The Autism Fire Rescue program has educated over 15,000 first responders in how to handle people with autism and as I found out, it is a mission that began very close to home for one fireman.  

"The best way to meet an emergency is to prepare. Firefighters, police, and EMTs make the anticipation of the unexpected a regular part of their day. People with autism follow a routine and if that routine is broken, this is where the confusion begins in a lot of them and they don't know what to do. They don't understand what to do," explains firefighter Bill Canatta.
Ted is 21 years old and living with autism. He cannot speak and is extremely sensitive to sight, sound and touch. A long-time firefighter, Bill is Ted's devoted dad. Their relationship has led the father down an unexpected path to educator:
"He's my best teacher. He shows me everything and this is what I do, is just convey that message to other first responders."
In seminars across the country, he provides the keys to identifying a person with autism and the solutions for helping them to safety:
"They can just, one, be out of control or aggressive. Another situation, they can have a regression, completely shut down. People with autism have left a burning building, but because of the confusion, went back in because that's their safety, or some people will run away."
There are 1.5 million Americans with autism and that number is growing by the hour. So the chances of this firehouse will encounter a person with autism on their next call is growing by the day. Soon after a training session with Canatta, Bill Turner found a child with autism at the scene of a house fire:
"He was running around outside, totally out of control. So I go to grab the young boy going by and I got him, and he started pounding me on the chest. He was just beating me like he was going to beat me to a pulp."
"He was doing it because he was very excited to see him. Probably his gear, reflective tape is very attractive. Shiny things can be attractive to people with autism," said Canatta.
Bill Tuner continues: "I remember the class had taught me that if I put my arms around him and put him in a bear hug that he will simmer down."
Canatta: "Bill gave him a bear hug and gave him the deep squeeze and he settled down immediately. It was perfect, a perfect scenario to keep him safe until his parents could take care of him." 

As these firemen prepare for the worst, their tool kit includes the best knowledge that Bill can give:
"This is just something we can learn that will help them through this type of situation. It's what we want to do. We want to do the right thing."
And Bill gave us some great advice: if you have any one in your home living with autism or any circumstance that requires special attention, you can go to your local fire department and tell them. It's important for first responders to have as much information as possible, when heading into an otherwise complicated situation... but what a group of heroes on so many levels.

Monday, March 26, 2012

New Research on Brain Growth

Hi everyone! Here's some new research out from the NIH:
FRIDAY, March 23 (HealthDay News) -- Researchers report that they have identified abnormalities in the DNA and RNA of cells in the prefrontal cortex of the brains of autistic children.

The findings may help to explain the underlying mechanism for the brain "overgrowth" that prior reports have documented in autistic children. Those studies have found that the brains of young children with autism are larger than the brains of non-autistic children, particularly in the prefrontal cortex. The prefrontal cortex is key to complex thoughts and behaviors, including language, social behavior and decision-making. This growth abnormality likely contributes significantly to the social, communication, and emotional deficits common among people with autism, the researchers said.

In the new study, researchers analyzed tissue from the prefrontal cortexes of 33 postmortem brain samples from autistic and non-autistic people aged 2 to 56. In addition to DNA differences known as copy number variations, researchers also did genome-wide RNA profiling and found differences in RNA between the autistic and non-autistic brains. RNA (ribonucleic acid) plays crucial roles within cells, serving as an intermediary between DNA, the blueprints for genetic information, and the production of proteins that carry out a vast array of vital activities in cells.

The RNA abnormalities appear to be involved with genes that code for proteins regulating cellular growth, the researchers said.
"What we found was the networks that are supposed to regulate the genesis of brain cells and develop them were abnormal. The networks that were supposed to regulate DNA repair were turned down. And the networks supposed to regulate neuron removal and survival were abnormal," said study author Eric Courchesne, director of the Autism Center of Excellence at the University of California, San Diego (UCSD) School of Medicine. 

The study is published in the March 22 issue of PLoS Genetics.

How might these differences fit into the autistic picture?
Preliminary research by the UCSD team found that an excessive amount of neurons, or brain cells, might account for the overgrowth. While typically developing kids had about 0.88 billion neurons in the prefrontal cortex, autistic children had about 1.57 billion. According to the researchers, the copy number variations along with the RNA abnormalities may disrupt the cell cycle and may explain the underlying mechanism driving the overgrowth.

"We found DNA defects, or copy number variations, in a variety of genes that regulate cell production and cell survival," Courchesne said. "To us, that suggests the explanation for why there are an abnormal number of neurons in the prefrontal cortex. Those genes fall into networks that control the number of neurons generated and the number that survive in prenatal life."

Researchers also noted that the RNA differences vary, depending on the age of the brain, with children and adults having different RNA profiles. Courchesne said that the way the brain responds to that overgrowth of neurons -- in other words, what's happening in those repair pathways -- may help to explain why people with autism may have different trajectories, with some seeming to regress and others continuing to learn new skills throughout their lifetime.

"In adulthood, we see individuals that continue to improve, and continue to gain more and more skills and abilities," Courchesne said. "Then there are others that don't show that continued, ongoing improvement or show the opposite. My best guess is the trajectory has less to do with the original cause of the autism, than with an individual's specific composition of genes, or the available genes to remodel the brain."

Robert Ring, vice president for translational research at Autism Speaks, said researchers offer up a provocative and plausible theory. However, he noted that while brain overgrowth is well-established, only one, small study has shown that the explanation for it is too many neurons.

"What's valuable about the approach this group has taken is that they've gone directly to the tissue of interest, and have asked, 'Is there any evidence there are abnormalities in the expression of genes that correlate with the neuro-anatomic or cellular findings that have been reported?'" Ring said. "What they're reporting is there is indeed some evidence that particular pathways might be disregulated in the autistic brain vs. the control brain, and some of these pathways, when you look at their function, may be a plausible explanation for the increased growth and increased cell number."

The study, Ring added, offers up new clues for researchers to pursue, but nothing is proven. "There is an enormous amount of work needed to confirm this," he said.

SOURCES: Eric Courchesne, Ph.D., director, Autism Center of Excellence, University of California, San Diego School of Medicine; Robert Ring, Ph.D., vice president, translational research, Autism Speaks; March 22, 2012, PLoS Genetics
 HealthDay Copyright (c) 2012 HealthDay. All rights reserved. More Health News on: Autism

Friday, March 23, 2012

Let's Light It Up Blue!!!

Light it up Blue! 
April is national autism awareness month and we would like to ask you to show your support and love for our little Nathan and countless other individuals affected by this disorder. We are lighting it up blue in honor of Nathan, Natalia, Layla, David, Caleb, Raquel and all my little guys at work that I can't name.  All we're asking is that you turn on a blue light and/or wear blue on Monday April 2. You can leave your light on all month, but it's especially important to have it on the 2nd of April, which is World Autism Awareness day. Below is a picture of the blue light bulbs available at Home Depot. They are only $2 and the proceeds to go Autism Speaks. You can use blue light bulbs or blue Christmas lights...  any light will do. Last year in Massachusetts,MGH, the State House and Fenway Park lit it up blue. To learn more please visit:

Our Nathan is doing unbelievably well: he is talking, he is potty trained, he knows his alphabet in upper and lower case, he can count to 20, he knows all his shapes and colors and is even starting to learn his address and phone number!!! NONE of this would have been possible if we had not received the early intervention services thanks to organizations like Autism Speaks, who've raised millions of dollars and awareness around the world! We'd love it if you'd join us!

Love and blessings,


Here's how WE Lit It Up Blue last year:
Our family- April 2, 2011 
Even his tongue was blue!
How Boston Lit It Up Blue:
Massachusetts State House!!!

Fenway Park!!!
Official description from Autism Speaks in regards to the "Light it up Blue" campaign:

WHAT IS Light It Up Blue?
Join Autism Speaks in celebrating World Autism Awareness Day on April 2 and Light It Up Blue to help shine a light on autism. Whether it's your front porch or your local city hall, an office party or a banquet, the whole world is going blue to increase awareness about autism.

About Light It Up Blue
Light It Up Blue, in its third year, is a unique global initiative by Autism Speaks to help raise awareness about the growing public health concern that is autism. Iconic landmarks around the world will Light It Up Blue to show their support on April 2, 2012 - World Autism Awareness Day.

About World Autism Awareness Day
In 2007, the United Nations General Assembly declared April 2 as World Autism Awareness Day (WAAD), with the goal of bringing the world's attention to autism, a pervasive disorder that affects tens of millions.
World Autism Awareness Day shines a bright light on autism as a growing global health concern. WAAD activities help to increase and develop world knowledge of the autism crisis and impart information
regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of people with autism, and features community events around the world where
individuals with autism and their families are warmly welcomed and embraced.

Wednesday, March 21, 2012

New Research... Nothing we didn't already know

Mothers of Kids With Autism Earn Less, Study Shows

Moms may need to devote time to caring for the child, researchers say
Monday, March 19, 2012
HealthDay news image
Related MedlinePlus Pages
MONDAY, March 19 (HealthDay News) -- Mothers of children with autism and autism spectrum disorders earn significantly less than what mothers of children who have no health limitations earn, a new study has found.
These moms even earn less than mothers of children with other health limitations.
Mothers of children with autism earned, on average, less than $21,000 a year, the researchers found. That was 56 percent less than mothers whose children had no health limitations and 35 percent less than mothers whose children had other health limitations.
In addition, moms who have children with autism are 6 percent less likely to be employed, and work an average of seven hours less per week than mothers of children with no health limitations, the study found.
While the researchers did not find differences in fathers' incomes, the overall income in families that have children with autism suffers, said lead researcher David Mandell, associate director of the Center for Autism Research at the Children's Hospital of Philadelphia and associate director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, in Philadelphia.
"Families of children with autism experience a 28 percent reduction in income compared to families with typically developing children," he said. The family incomes of parents whose children have autism is also less, 21 percent, than those whose children have other health limitations, Mandell found.
The study is published online March 19 and in the April print issue of Pediatrics.
For the study, Mandell and his colleagues looked at data from the 2002-2008 Medical Expenditure Panel Survey. This ongoing survey of U.S. households collects detailed information on medical conditions, health services use and expenditure, and other data.
The researchers looked at 261 children with autism spectrum disorders, nearly 3,000 with other health limitations and more than 64,000 with no health limitations.
About 67 percent of the children with autism had mothers who worked outside the home. About 92 percent of the kids with autism had working fathers.
Autism spectrum disorders now affect about one in 110 children in the United States. The spectrum includes a range of neurodevelopmental disorders, all marked by difficulties in social and communication skills and repetitive behaviors.
A mother may cut back work hours or drop out of the workforce to help supervise their child's care, including advocating for services, according to the researchers.
The costs of caring for children with other disabilities is about 5 percent to 12 percent of family income, the researchers noted, citing other research.
The researchers didn't have information on how severe the autism was in each case, so Mandell couldn't say if costs are more or go up if the autism is more severe.
The findings don't surprise Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at the Steven & Alexandra Cohen Children's Medical Center of New York.
"Basically, autism is taking a double toll," he said. Besides the increased costs for health care and other services, the reduced earnings also have an impact, Adesman pointed out.
Parents can and should reach out for help, the experts stressed.
"Take advantage of services available," Adesman said.
For example, Mandell noted, a parent group in Philadelphia will send someone knowledgeable to go with a parent of a child with autism to the school meeting to develop the educational plan.
Peter Bell, executive vice president for services and programs for Autism Speaks, an advocacy group, said the task of caring for a child with autism can be daunting.
"The study isn't surprising for families who live with autism every day," he said. "When their child is diagnosed with autism, it is a game changer."
SOURCES: David Mandell, Sc.D., associate director, Center for Mental Health Policy and Services Research, University of Pennsylvania, Philadelphia, and associate director, Center for Autism Research at the Children's Hospital of Philadelphia; Andrew Adesman, M.D., chief, developmental and behavioral pediatrics, Steven & Alexandra Cohen Children's Medical Center of New York, New Hyde Park, N.Y.; Peter Bell, executive vice president, services and programs, Autism Speaks; March 19, 2012, Pediatrics, online

Wednesday, March 14, 2012

For Dads from Max Lucado

To you daddies who regularly read my blog, I found this great little anecdote by Max Lucado on the Women of Faith website. I hope you will enjoy it. Moms, it's good for us to read, too!
If God is our guardian, why do bad things happen to us?
Have they? Have bad things really happened to you? You and God may have different definitions for he word bad. Parents and children do. Look up the word bad in a middle-schooler’s dictionary, and you’ll read definitions such as “pimple on nose,” “Friday night all alone,” or “pop quiz in geometry.” “Dad, this is really bad!” the youngster says. Dad, having been around the block a time or two, thinks differently. Pimples pass. And it won’t be long before you’ll treasure a quiet evening at home. Inconvenience? Yes. Misfortune? Sure. But bad? Save that adjective for emergency rooms and cemeteries.

What’s bad to a child isn’t always bad to a dad.
What you and I might rate as an absolute disaster, God may rate as a pimple-level problem that will pass. He views your life the way you view a movie after you’ve read the book. When something bad happens, you feel the air sucked out of the theater. Everyone else gasps at the crisis on the screen. Not you. Why? You’ve read the book. You know how the good guy gets out of the tight spot. God views your life with the same confidence. He’s not only read your story . . . He wrote it. His perspective is different, and his purpose is clear.

God uses struggles to toughen our spiritual skin.
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way. (James 1:2-4 MSG)
From Sharing a Laugh. Copyright © 2007 by Thomas Nelson, Inc. Published by Thomas Nelson. Used with permission. All Rights Reserved.

Tuesday, March 13, 2012

Another Re-post from Women of Faith

This has nothing to do specifically with women, or with being a parent of a child with special needs. This has EVERYTHING to do with our perspectives in life, which I frequently say is one of the biggest secrets to finding peace in the autism (or any) puzzle. I hope this anecdote will be a blessing in your life as well!

Seeing God in Everything by Sheila Walsh
He has made everything beautiful in its time. Also He has put eternity in their hearts, except that no one can find out the work that God does from beginning to end. —Ecclesiastes 3:11

Nineteenth-century theologian Charles Finney said, “A state of mind that sees God in everything is evidence of growth in grace and a thankful heart.”

When I came across that statement, I wrote it in my notebook, and it became a daily challenge for me. Like me, do you also acknowledge that God is in everything but struggle to see God’s hand in everything that is happening right now, in your daily life?

What are you dealing with right now that you don’t remember signing up for? I think of those waiting for medical test results—for themselves or a loved one, maybe even a child—that may well determine the path their lives will follow. I think of a female soldier during the war in Iraq who wrote to say that listening to Women of Faith audiotapes was sometimes the only thing that kept her sane when she saw friends die.

Harsh realities that intrude into our lives can make it hard to recognize the fact that our God is always present. But some of the greatest surprises to me on this spiritual journey are those moments when it becomes clear that God has been faithfully cultivating my heart—those times when things don’t go as planned but I do see God is in control.

These moments don't have to be extreme, life-and-death situations. Often it’s in the little things that we see God's work. That is grace, and it is a gift.

Excerpted from Daily Gifts of Grace © 2012 by Thomas Nelson, Inc. Used by permission. All rights reserved.
See Sheila at a 2012 Women of Faith
ONE DAY or Celebrate What Matters event near you. Complete event schedule here.

Monday, March 12, 2012

Great Article from The Huffington Post

Hi everyone! Nathan's birthday party this weekend was a wonderful success! Of course, he had his moments but in general it was great. I am so proud of my wonderful boy!

A parent from our city's special education parent advisory committee (SEPAC) sent out this article from The Huffington Post that I thought I would share with you. Someone last week told me that I should not be angry at parents of neurotypical kids when they complain about the things that seem trivial to parents of kids with special needs. Somehow my words were taken to mean I have days when I "hate the world." WOW! Those are strong words. I don't hate the world! I just have days when the trivial things people complain about are just too much... there is only so much patience and tolerance one can have for narrow-mindedness. Then I read this article... and I realized one of the main reasons we have less patience and tolerance than most is because we are more tired than most. This article was written by a mother of a child with medical special needs. It rang so true with me that I had to share it here:

Maria Lin Editor-in-chief, LearnVest

6 Things You Don't Know About a Special Needs Parent

About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3 year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.

1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1 year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...

3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2 year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.

4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)

5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...

6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.

Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.

Follow Maria Lin on Twitter: www.twitter.com/marialinnyc 
To go directly to the article: http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html?ref=email_share 

Tuesday, March 6, 2012

Borrowed from "Autisable": New study finds clear link between GI disorders and ASD

Another MUST READ!!!! This was posted on the Autisable blog website, written by a guest writer, neurobiologist Pat Levitt, Ph.D.:

Tummy Troubles and Autism

Guest post by neurobiologist Pat Levitt, Ph.D., of the University of Southern California’s Keck School of Medicine, in Los Angeles
Many children with autism spectrum disorders (ASD) have co-occurring medical conditions that affect their quality of life and response to therapy. One of the most common of these medical conditions is gastrointestinal (GI) disorder. Our research directly examines the relationship between the two and creates a foundation for understanding the biology and behaviors unique to children affected by both disorders. It is described, in detail, in our recent report in the journal Autism Research.
Our multi-disciplinary research group included neuroscientists, a clinical psychologist, a pediatrician and a pediatric gastroenterologist. We enrolled 121 children through Vanderbilt University, in Nashville, primarily through Vanderbilt’s autism clinic, which is part of the Autism Speaks Autism Treatment Network (ATN). These children fell into one of three groups: those with ASD and GI disorder, those with ASD only and those with GI disorder only. Their parents completed a dietary journal and questionnaires about the children’s behavior and GI symptoms. In addition, a pediatric gastroenterologist evaluated the children with GI disorders.
We found very high agreement – more than 90 percent – between parent reports of GI symptoms and the gastroenterologist’s evaluations. While the specific description of the GI condition sometimes varied between parent and physician, these findings suggest that contrary to what some people think, parents do not over-report GI conditions in their children. Also contrary to some popular thought, the children’s diet and medications did not significantly contribute to their GI distress.
Overall constipation was the most common GI diagnosis. It occurred in 85 percent of children with both autism and GI disorder and was most likely to occur in children who were younger, nonverbal and/or had significant social difficulties. In fact, we found a six-fold increase in communication disturbances in the group of children who had both ASD and GI disorder, compared to children with ASD only.
This strong association between constipation and language impairment has the support of a previous studyshowing a unique genetic association between children with ASD and GI disorder. As such, our findings further highlight the need for healthcare providers to be vigilant in detecting and treating GI symptoms in children on the spectrum. This is particularly important in the care of nonverbal children who can’t describe their distress. Our research also provides a strong foundation for further research on the causes and treatment of autism associated with GI disorder. We need to know more about how these co-occurring conditions affect the mental and physical health of so many children and adults.

To read more: http://www.autisable.com/759565042/tummy-troubles-and-autism-/?cuttag=true#cuttaganchor 

New Research Findings About Medication

Last spring when we were struggling so much with Nathan we were desperate. We were willing to try ANYTHING to help Nathan's behavior so both he and I would be safe. Things were really, really serious. So much so that we consulted with a whole range of specialists: developmental pediatrician, clinical psychologist and a child psychiatrist. Our big question was "Will medication help Nathan control his behavior and keep him and everyone around him safe?" Time after time EVERY SINGLE SPECIALIST said NO to medication. At the time we felt like no one wanted to help. They all kept telling us that we needed more consistent behavioral support at home and at school. I can't even begin to tell you how frustrating that felt. Our pediatrician, in particular, was extremely resistant and kept telling us that eventually we'd figure out the triggers or see the warning signs to prevent these behaviors from happening. Well, as much as I hate to admit it, they were right. I am not saying medication is a bad thing, but for Nathan it was not the time. I truly believe some kids really, really need it to help balance their neurochemistry. If in the future we felt it was necessary, we'd probably go that route with Nathan, too. It is a hard choice for lots of families.

These past few weeks a couple of research studies came out that are related to medication and children with autism spectrum disorders. One of them supported the exact point our specialists were trying to make to us last spring. I wanted to share the findings with you. Here is an excerpt and the link to the study article from NIH:

'Parent Training' May Help Kids with Autism Behave Better 
Senior study author Lawrence Scahill, a professor at Yale University School of Nursing and Child Study Center in New Haven, Conn.
The study involved 124 children aged 4 to 13 with an autism spectrum disorder and serious behavioral issues, including daily, prolonged tantrums, aggression or self-injurious behavior. The children were prescribed risperidone (Risperdal), an antipsychotic drug approved by the U.S. Food and Drug Administration for treating severe behavioral problems in children with autism.
Half the children and their parents were also assigned to a six-month, structured "parent training" program. Parents were asked to identify the most difficult, disruptive behaviors and to think about what preceded the incidents and why the child might do it. They then worked with counselors to devise strategies to avoid the triggers and help the child respond better to the everyday stressors. Parents who underwent training reported a greater decrease in problem behaviors than the parents of children on medication alone, researchers found. By the end of the study, the average dose of risperidone was lower for kids in the parent-training group.
"On the tantrums, the aggression and the self-injury, the combination of medications and parent training was better," said Scahill. "How much better? Not a huge amount, but it was an incremental improvement over an already effective improvement." Parents who received training also reported improvements on a test known as the Vineland Adaptive Behavior Scale, which measures how well a child does everyday activities, such as communicating, socializing, dressing, eating at the table and going to school. By diminishing serious problem behaviors, such as tantrums and aggression, children's skills in other areas improved, but the difference was not statistically significant.  To read more, go to: http://www.nlm.nih.gov/medlineplus/news/fullstory_122494.html

The second study that was published recently also looked at the use of medication in individuals with ASD. This one was a little bit scary, but still necessary for parents to read. Here is the excerpt and link to the article online:  
Meds for Autism Not Well Understood 
Children with autism may benefit from medications to treat children with attention-deficit hyperactivity disorder (ADHD) and other related disorders, but clearer guidelines are needed, a new study shows.
Researchers analyzed data from more than 1,000 U.S. teens enrolled in special education programs, to assess the use of psychiatric medications in those with autism, ADHD and both conditions. Patients with both autism and ADHD had the highest rates of medicine use (about 58 percent), followed by those with ADHD only (around 49 percent) and those with autism only (about 34 percent), according to study author Paul Shattuck, an assistant professor at Washington University in St. Louis, and colleagues. Black teenagers with autism only or with autism and ADHD were less likely to receive medications than whites.
"Observations from the present study reinforce the complexity of pharmacologic treatment of challenging behavior in kids with [autism spectrum disorders] and ADHD," Shattuck said in a university news release. "There needs to be a clearer guide for treating kids with both an [autism spectrum disorder] and ADHD."
He noted that drug treatment for autism reflects a trial-and-error approach based on associated symptoms, and there is a poor understanding of overall medication use for children with autism. "Also striking are the high rates of antipsychotic, antidepressant/anti-anxiety and stimulant medication use in these youths," Shattuck said. "Additional studies examining the treatment of core and associated [autism spectrum disorder] symptoms are needed to guide the treatment of these kids."  To read more, go to: http://www.nlm.nih.gov/medlineplus/news/fullstory_122261.html
Let's stay informed! Blessings!

Monday, March 5, 2012

The Day Two Lives Began

March 5th is always a bittersweet day for me. The "sweet" part is the SWEETEST, because it's son's birthday! The "bitter" part is quite bitter, as it's also the day I lost the ability to have any more children and nearly lost my life in the process. I can't begin to explain how hard it is sometimes to think back to the day my baby was born. Reliving the euphoria of finally having a child after such a long wait only to be thrown into the pit of depression of knowing it would never happen again is almost too much for my mind to take. For all purposes I shouldn't be here. Had I been at a different hospital, or had this happened in another place or time I would have missed out on seeing my son grow up. To think of my husband raising my beloved child alone having lost me is even harder to wrap my head around. I don't stop thanking God for giving me back to my family. Every new day is truly a gift from God!

So, in essence, on March 5th two new lives began: my son's and mine. I was given what many call "a second chance." Funny how people use that term so loosely. I do believe that I began a new life that day. You see, the little man was never an easy baby. He has taken up 100% of my time, strength and energy from the day he came home from the hospital. My life as I knew it was over. It had just been my "training" for what was to come. I was set on a marathon path that would take the greatest persistence and endurance possible... but God already knew that!

In the Bible we find several references to the term "rebirth," but it's the passage in Acts 5:17-21 that I choose to focus on. In this chapter we find the apostles in prison (again!) and they are freed by an angel of the Lord. The angel gives them specific instructions: "Go, stand in the temple courts...and tell the people the full message of this new life." What?!?! The temple courts?!?!? That was going right into to the backyard of the same folks who'd put them in jail to begin with. But God wanted to use this bad situation to give testimony of His power.

As time passes it becomes more and more apparent to me what my mission is in this "new life." My son's life has given my life a clearer purpose. I need to tell people the story of what God has done for me and my family! In my heart I know God is using my son's diagnosis for a greater plan. I think of all the amazing things that God has allowed me to do in this "new life," like: #1 being the mom of the most amazing little guy on the planet (I know, I'm biased!), fundraising for Autism Speaks, being able to encourage other parents whose lives are touched by ASD, starting the special needs children's ministry at our church, counseling numerous parents of kids with special needs in regards to their legal rights based on special education law, starting this blog, writing my book... the list just keeps going! Perhaps I am rebuilding AS I stand in the midst of our challenges to tell others about what God has done for us in this "new life."

March 5th IS a major milestone for our family. It was the day that two new and precious lives began. Surely not what we'd planned, but certainly lives I LOVE to tell others about!

HAPPY BIRTHDAY LITTLE MAN!!!!!!!!!!!!!!!!!!!!!!