Monday, March 2, 2015

#The Dress Gives Insight to Autism

The first time I heard the "White/Gold" and "Blue/Black" dress debate, I thought "Dah! The dress is Gold and White, what's the big deal. Some folks are just color blind!".   Then I showed it to Evyn and Nick. Evyn saw what I saw, but Nicholas saw Blue and Black!  Of course he did :)  LOL. Then I found this article about sensory intregration and I could not agree more.

BTW: I also moved the laptop around so I could see the dress from different angles.  And there was one angle where the dress was in perfect focus and I saw Blue and Black!  WTHeck, perception is so complicated.

Thursday, February 26, 2015

News: Autism Genes Active During Fetal Development

Genes Connected to Autism Active During Fetal Development

February 22, 2015 | by Lisa Winter
photo credit: vetre/Shutterstock
Autism Spectrum Disorder (ASD) affects about 1 in 68 children. Genetics plays a large role in the onset of ASD, but the exact genes involved are not clearly defined. However, a new paper published in Neuron describes how specific genes known to be connected to ASD are active during fetal brain development. Lilia Iakoucheva of the University of California, San Diego headed up the research.
The study focused on copy number variants (CNVs) in particular regions that have previously been connected to ASD. However, the researchers soon learned that not all CNVs were activated during the same growth period. Activation of various CNVs was staggered throughout fetal development. 
The two genes, known as KCTD13 and CUL3, have ASD-associated mutations, and become activated around the middle of development. These genes regulate the protein RhoA, which is crucial to brain development. RhoA is responsible for the development and maintenance of neurons, while also assisting in the regulation of their migration.
"The most exciting moment for us was when we realized that the proteins encoded by these genes form a complex that regulates the levels of a third protein, RhoA," Iakoucheva said in a press release. "Suddenly, everything came together and made sense.”
Image credit: UC San Diego School of Medicine
“Our model fits perfectly with what we observe in the patients," co-first author Guan Ning Lin added.
Using zebrafish (a common model organism in genetics), they found that certain mutations on CUL3 adversely affected KCTD13, which, in turn, affected the normal function of RhoA. Just as the zebrafish with these mutations had head sizes that differed from typical development, so do children with ASD. Additionally, the mutations also correlated to the weight of the fish, just as it does in humans.
Moving forward, it is hoped that obtaining a better understanding of these genetic pathways and how they connect to various disorders on the Autism spectrum will allow researhers to manipulate these pathways into a potential treatment.
"The fact that three different types of mutations may act via the same pathway is remarkable," concluded Iakoucheva. "My hope is that we would be able to target it therapeutically. If we can discover the precise mechanism and develop targeted treatments for a handful of children, or even for a single child with autism, I would be happy.”

Tuesday, February 24, 2015

New Report: Regional Center System on the Brink of Collape

Dear Everyone,

Below is an email communication I received today. This topic will touch all of us, even those who don't have a family member with a developmental disability, like autism. I could go down the moral path, jump on my soapbox and go on about society being defined by how it cares for those who cannot care for themselves, but for now I'll stick to the financial implications. The lack of funding to the Regional Centers - where the immediate cost of care is less expensive than the long term  cost of neglect - will impact our society as a whole when the bill comes due.  Simply put, if we do not fund early intervention, help individuals to reach their potential to become tax payers & live independently, and support families to keep individuals living in their homes vs costly and ineffective institutions individuals with DD's will be forced to rely on social services with tax payers footing 100% of the bill. This is an important issue for all of us. We all need to weigh in and be heard. For me it's simple, do I want a person who is being paid below minimum wage to care for my son when I can't? Who will give up their ability to live, to care of my family? Do I want my son living in a State Developental Center, where a shower is being hosed down by a fire hose? No I don't.  If you think this scenario is impossible watch the video from the 70's and wake up, then take action. Make a call. Write a letter. 

"We're Here to Speak for Justice"  Here’s the link…please give it another go!  (new link 8/1/2011)

ARCA has released its newest report, titled On The Brink Of Collapse, meant to provide policy-makers, advocates, and the citizens of California an understanding of the crisis engulfing our state’s developmental services system.
Long-term underfunding of the service system has left both service providers and regional centers struggling to serve more people with fewer resources, which results in higher caseloads and less customization of service options. Today, service rates are lower despite the higher cost of living and working in California and caseload ratios are higher than in most other states. The result is a system that oftentimes is providing a servicerather than the right service, and is at risk of losing significant federal funding.

California spends less on its developmental services system for each resident of the state than most other states in the nation. When taking into account the relative wealth of each state, California’s performance is even lower and continues to decline.

In general, California’s rates for residential facilities, day and work services, and supported employment programs fall behind other large or western states. The impact of this difference is exacerbated by California’s high cost of living and other costs of doing business such as its highest-in-the-nation workers’ compensation premiums. In most metropolitan areas examined for this report, California’s service rates were lower, but the cost of living was significantly higher.

ARCA hopes this report will increase your understanding of the fiscal challenges California’s developmental services system faces in fulfilling its promise to individuals and their families and the urgent need for both short and long-term Budget solutions, which ARCA and the other Lanterman Coalition members support, to stabilize and advance the system. If questions arise regarding the enclosed report, please feel free to email us via this contact form.
The two prior reports, separately examining inadequate rates for service provision and underfunding of regional center operations, are also available.
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Monday, February 23, 2015

Autism and Alzheimer's - Medications that work for Nick

Nick has been taking Namenda for several years. It's a drug associated with Altzheimers treatment. Nick takes it and I am certain it helps him with focus.  Nick takes a combination of medications and supplements and has since he was first diagnosed.  Over the years I've made a habbit of reducing dose's of medications and supplements either on my own because proof that they work is anicdotial and/or under his Dr.'s direct supervision.  I do this to check in to see if  something is really working, still working or if it can be eliminated.  This week I experiemented with a mild reduction of Nick's Namenda. I do not tell anyone, not his sister or his aids. because I don't want them to change their behavior.  I saw the difference Nick was less focused, and his frustration was really low. The team also reported a bad week. Seems Namenda still works for him. 

Friday, February 20, 2015

Residential Summer Camp for Adults 18-26 with Developmental Disabilities!! Wow

I had to share this! There are not enough of these camps for our bigger kids. Camps and groups who offer quality programs are critical and need our support. It's not free, but there are organizations who offer grants for summer camp. My kiddo is not old enough to go yet. If anyone has gone and has feedback, or has any ideas on where to get grants, or more programs. PLEASE POST. 

CAN Camp 2015

Residential Summer Camp for Adults 18-26 with Developmental Disabilities

$1150 includes room, board and activities 

Campers stay in the dorms at California State University of Long Beach while enjoying activities in Long Beach. 

The focus of the camp is to experience independent living while practicing life and social skills in a supportive environment.   

For more information on CAN Camp please contact us by email at 
or by phone (562) 804-5556

Space is limited so get your application in early!

Testimony from campers

Chris said, "This was the best week of my life, I did not want to leave"

Kevin said, "Can Camp was the best time of my life!" (Now one of his favorite thing to do is paddle boarding)

Felix said, "It was amazing, I have not been able to do many of these things before with my    friends, I want to get a job so that I can live on my own"

Betty Pearson,John's Mom said"do you want to come back again next year and he said Yes! (John says yes to just about everything) his mother then asked "can I come too?" And John said No!!! His mother was stunned because he very rarely says no...

Betty Pearson, John's mom - I kept on hanging around camp when finally Terri said John is going to be fine. I left went to my car and cried, not out of sadness but out of happiness. Foir the first time I got a glimmer of hope that John can live an independent life.
Henry said, while jumping thru the waves at Bolsa Chica Beach," this is great! Also stating, Can we do this again? On his last day he asked can I go to Can Camp next summer?"

Marcus said, (a man of very few words) to Terri one of the Camp Directors, "I love you, I'm happy!" 

Ivan said, "I loved doing everything, but my favorite things were learning to boogie board and sitting around the campfire at Bolsa Chica Beach with my friends"
STAY IN TOUCHFacebook   Twitter   LinkedIn   Pinterest
Autism Society of Los Angeles 
8939 S. Sepulveda Blvd, Suit 110-788
Los Angeles, CA 90045

Tuesday, February 17, 2015

Up To 80% Of Children With Autism Have Difficulty Sleeping

Nick didn’t sleep when he was inside of me, now he is 16 and still can’t sleep without assistance. When most kids have drifted off to dreamland Nick is manic and bouncing off the walls. It’s a side of autism no one told me about until we had suffered for years. Found this and wanted to share.

Helping Your Child With Autism Get a Good Night's Sleep
During the first few months of life, babies ease into a normal cycle of sleep and wakefulness. They gradually reduce the number of daytime naps they need and start sleeping for longer periods of time at night. But some children continue to have difficulty falling asleep or sleeping through the night, and the problem can persist long after children start school.
Sleep disorders may be even more common in children with autism. Researchers estimate that between 40% and 80% of children with autism have difficulty sleeping. The biggest sleep problems among these children include:
·         Difficulty falling asleep
·         Inconsistent sleep routines
·         Restlessness or poor sleep quality
·         Waking early and waking frequently
A lack of a good night's sleep can affect not only the child but everyone in his or her family. If you're bleary-eyed from night after night of waking up with your child, there are a number of lifestyle interventions and sleep aids that can help.
What causes sleep disorders in children with autism?
Researchers don't know for sure why autistic children have problems with sleep, but they have several theories. The first has to do with social cues. People know when it's time to go to sleep at night, thanks to the normal cycles of light and dark and the body's circadian rhythms. But they also use social cues. For example, children may see their siblings getting ready for bed. Children with autism, who often have difficulty communicating, may misinterpret or fail to understand these cues.
Another theory has to do with the hormone melatonin, which normally helps regulate sleep-wake cycles. To make melatonin, the body needs an amino acid called tryptophan, which research has found to be either higher or lower than normal in children with autism. Typically, melatonin levels rise in response to darkness (at night) and dip during the daylight hours. Studies have shown that some children with autism don't release melatonin at the correct times of day. Instead, they have high levels of melatonin during the daytime and lower levels at night.
Another reason children with autism may have trouble falling asleep or awaken in the middle of the night could be an increased sensitivity to outside stimuli, such as touch or sound. While most kids continue to sleep soundly while their mother opens the bedroom door or tucks in the covers, a child with autism might wake up abruptly.
Anxiety is another possible condition that could adversely affect sleep. Children with autism tend to test higher than other children for anxiety.
What kind of effects do sleep problems have?
Not getting a good night's sleep can have a serious impact on a child's life and overall health. Research has shown that, in children with autism, there is a connection between lack of sleep and the following characteristics:
·         Aggression
·         Depression
·         Hyperactivity
·         Increased behavioral problems
·         Irritability
·         Poor learning and cognitive performance
If your child isn't sleeping, there's a good chance you aren't, either. One study showed that the parents of autistic children sleep less, have poorer sleep quality, and wake up earlier than parents of non-autistic children.
How do I know whether my child has a sleep disorder?
Every child needs a slightly different amount of sleep. In general, these are the amounts of sleep children require, by age:
·         Ages 1-3: 12-14 hours of sleep per day
·         Ages 3-6: 10-12 hours of sleep per day
·         Ages 7-12: 10-11 hours of sleep per day
If your child regularly has difficulty falling asleep or wakes up repeatedly throughout the night, it might be a sign of a sleep problem. To know for sure, make an appointment with your child's pediatrician. The doctor may refer you to a sleep specialist or an ear, nose and throat doctor.
It can help to keep a sleep diary for a week to track how much and when your child is sleeping. You may include any snoring, changes in breathing patterns, or difficulty breathing. You can share this diary with your child's doctor and any specialist involved in treatment.
How can I help my child sleep better?
Sleep medications should only be used with children as a last resort . There are a number of lifestyle changes and natural sleep aids that can improve sleep time and quality for kids with autism:
·         Avoid giving your child stimulants such as caffeine and sugar before bed.
·         Establish a nighttime routine: give your child a bath, read a story, and put him or her to bed at the same time every night.
·         Help your child relax before bed by reading a book, giving a gentle back massage, or turning on soft music. 
·         Shut down television, video games, and other stimulating activities at least an hour before bedtime.
·         To prevent sensory distractions during the night, put heavy curtains on your child's windows to block out the light, install thick carpeting, and make sure the door doesn't creak.
·         Ask your pediatrician about giving your child melatonin just before bedtime. This dietary supplement is often used as a sleep aid to help people get over jet lag. It may help normalize sleep-wake cycles in autistic children who have sleeping issues, and research done so far finds that it's safe and effective.
·         Talk to a sleep psychologist about bright-light therapy. Exposing the child to periods of bright light in the morning may help regulate the body's release of melatonin.

WebMD Medical Reference
WebMD Feature: "How Much Sleep Do Children Need?"
Richdale AL. Developmental Medicine & Child Neurology, 1999.
The National Autistic Society: "Sleep and autism: helping your child."
Meltzer LJ. Journal of Pediatric Psychology, 2008.
Andersen IM, Kaczmarska J, McGrew SG, Malow BA. Journal of Child Neurology, 2008.

Sunday, February 15, 2015

Play Stressful for Kids With Autism

Brain scans also reveal apparent lack of social recognition during video play, researchers say

FRIDAY, Feb. 13, 2015 (HealthDay News) --
Children with autism appear to approach play differently than typically developing children, a recent study contends. Article Link:
"Children with autism lack a social component to their play and don't 'adjust' their play accordingly when another is involved," said study co-author Blythe Corbett, an associate professor of psychiatry at Vanderbilt University in Nashville. 
"For example, they tend to interact less with other children and show a preference to play alone or nearby with objects even when other children are near," she said.
Autism is a developmental disorder in which children have trouble communicating with others and exhibit repetitive or obsessive behaviors. About one in 68 children in the United States has been diagnosed withautism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention.
In the new study, researchers conducted a series of experiments with 42 children, aged 8 to 12, who either had an autism spectrum disorder or were typically developing. The investigators collected samples of cortisol, a stress hormone, from the children's saliva before and after playing on the playground with another child.
"The arousal level of the children with autism during play suggests that interaction with peers can be quite stressful," Corbett said. "In this study, we also found a relationship between brain activity during play, behavior and stress level."
All of the children underwent brain scans while playing a computer game in which they believed they were playing a real person half the time and a computer the other half.
"Typical children showed vast differences based on play with human versus computer partners," Corbett said. "While we know that children with autism have difficulty with social play, the current study showed that the brain patterns of children with autism spectrum disorders activate similar brain regions regardless of whether they are playing with a child they met or playing with a computer partner."
One expert said the study, published recently in the journal Social Cognitive and Affective Neuroscience, had limitations.
"This study is attempting to provide some level of physiological measure to assess how children with autism spectrum disorders respond differently from neurotypical children during play," said Dr. Glen Elliott, chief psychiatrist and medical director of Children's Health Council in Palo Alto, Calif.
But he pointed out aspects of the study that limit its usefulness, such as only including children with autism who had higher IQs (at least 80). The study also only showed that changes in the brains of children with autism existed, but not why they existed.
"We cannot use the data to infer an understanding of how brains of children with autism spectrum disorders differ from those without autism," Elliott said. "It may well be that the children with autism understood the rules in ways different from [comparison] children. If so, that difference in understanding may be the cause of the difference in brain scan results."
So what does "play" look like for children with autism? Elliott said that depends on the severity of their condition, their interest in an activity and their level of mental functioning.
"In general, children with autism are less able to do pretend play and less able to put themselves in the position of trying to understand what someone else may be thinking or feeling," Elliott said.
The aspect of the study that rang true for parenting a child with autism was the stress of socializing, said Shannon Des Roches Rosa, of Redwood City, Calif., whose 14-year-old son has autism. That stress may even be greater under artificial circumstances, such as a lab, she said.
"Mostly I've learned to let my son do the kind of play that makes him happy rather than prod him toward the kind he 'should' be doing," Des Roches Rosa said. "What may not look like play by non-autistic standards is deeply satisfying to kids like my son."
Her son's play usually involves intense sensory activities, such as kicking balls back and forth or jumping on a trampoline, she said. He also enjoys his iPad, particularly apps that can be activated with focused tapping, she added.
Corbett said that the play of children with autism tends to be more repetitive and more focused on computers, videos and technology than on engagement with other children.
For children with autism, some social-skills programs with peers might help increase interest in social play while reducing stress, she suggested.

"Parents can provide opportunities for children with autism spectrum disorders to play with positive, supportive peers to enhance their interest, motivation and aptitude to play with others," Corbett said. "It may help to reduce the amount of computer use and play with videos."
Elliott said this study may not offer many insights to parents of children with autism because they already know that getting them to play with peers is difficult.
"Perhaps they [parents] can take heart in the possibility that studies like this are beginning to map out what parts of the brain engage in certain activities," Elliott said. "But that is a long way from figuring out how to change the observed differences."

Friday, February 13, 2015

Sensory Solutions for Teens and Adults!

"Yogibo" a giant pillow designed to give big kids the sensory input they need!

Nick is 5'10", 170lbs and needs full body pressure to calm and organize his body. When he was younger there were so many choices from park swings to mini trampolines to indoor suspended equiptment.  Now he's too big for bean bags, and when he leaps (actually he agressively throws himself) onto a bed or couch, I cringe knowing he's going to break something!

Until recently I had taken to covering him with big pillows and then sitting on him, which seemed wrong on so many levels! LOL 

Recently I introduced the "Yogibo" and he loved it! It is super dense and sturdy enought to take all Nick can dish out, which is alot! Seems it is well worth the investment as he can keep it for years to come, it makes him happy and I'm sure it's going to save our funiture.

BTW:  The only drawback is finding a place to keep it when it doesn't have a kid on it. I just stand it up in a corner and ignore it :).  

Tuesday, January 27, 2015

Critical Advocacy Tool Goes Online!!! The Lanterman Act Crosses into the 21st Century! Good News for All :)

The Lanterman Act crosses into the 21st Century! Good news for all :) Call me crazy, or cra cra if you prefer, but I was flat our excited to see this document make it online. It's a critical tool for all CA families who need to know their rights!  

The 2015 Lanterman Disabilities Act is now online!


At a time when budget cuts are trying to take away services, our best chance at protecting them and our children is to know our rights and now we can do that a little easire!  BTW some amazing families fought to make the Lanterman Act happen when the only option for our kids was an institution. If you have not seen this video, grab a hanky have a seat, and check it out.  

We Can't Forget The Past! Watch this documentary “We are Here to Speak for Justice”

If you don’t read this piece, watch this documentary  
"We're Here to Speak for Justice"  Here’s the link…please give it another go!  (new link 8/1/2011)