Autism - Day by Day

Bye Bye Abnormal EEG, Epilepsy! Is it possible?

2012-02-08T22:53:00.000-08:00

Almost 3 years ago Nicky escalated from absent seizures to grand mal, bringing a whole new layer to our already complicated world. Instantly there were more tests, more days in the hospital, more medicine, more monitors, more learning difficulties, more behavioral responses to the meds, just more; which I thought was simply our new normal.

I didn't imagine that one day, his doctor would say "The medications are working. His EEG's have been normal, he's doing well and we can begin slowly weening him off the medications". I was stunned. Did he really mean GONE, as in forever? I just thought we were blessed his seizures were under control, but now we were talking about Nicky seizure free. We had an 80% chance they were gone for the rest of his life! I really did not know his doctor's goal was to eliminate the seizures. So when he said, "It's time, are you ready"? All I could think was, of course I'm ready. No more medications that can both help and harm him, no more monthly trips to the pharmacy, no more routine labs to check on medication levels and his organ functions, no more getting him to take four or more medications two times a day. I once calculated that I was spending 121 hours a year just grinding and blending the various medications. So when he asked if I was ready to stop, all I could think was who wouldn't sign up for that! What a happy day!

New DSM Criteria: The Autism Society & Autistic Self Advocacy Network Respond

2012-02-02T18:26:00.000-08:00

I just got this letter in my email and wanted to pass it along.

Dear Friend,

As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5:

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5's criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5's final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, "First, do no harm." As such, it is essential that the DSM-5's criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case - namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument - no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

Sincerely,

Ari Ne'eman
President of
Autistic Self Advocacy Network
aneeman@autisticadvocacy.org

Experts Want Suicide Risk Warning on ADHD Drug

2012-02-01T12:33:00.000-08:00

Like we don’t have enough to be concerned about as wenavigate this world of the unknown with our kids….

GAITHERSBURG, Maryland (Reuters) - Children who take a common drug for attention deficit disorder should be warned about the risk of suicidal thoughts, U.S. pediatric health advisers said on Monday.

Several members of an advisory committee to the Food and Drug Administration asked the agency to change the label for Focalin, an attention deficit medicine made by Swiss drugmaker Novartis AG, to reflect this risk. The drug is approved for children aged 6 or older.

The FDA often follows the advice of its committees, although it is not required to.

The FDA said it received eight reports of suicidal thoughts for children or adolescents who took the drug over the past six years, and four of the cases appeared to be linked to the medicine. The link for the remaining cases was less clear.

"The suicidal ideation seems to be pretty serious," said Dr. Sheldon Kaplan, panel member and chief of infectious diseases at Texas Children's Hospital. Read more:

Experts want suicide risk warning on ADHD drug - Yahoo! News

GAITHERSBURG, Maryland (Reuters) - Children who take a common drug for attention deficit disorder should be warned about the risk of suicidal thoughts... More

More Evidence of Autism's Financial Toll

2012-02-01T12:23:00.000-08:00

More Evidence of Autism’s Financial Toll

A new study, from the National Center on Birth Defects and Developmental Disabilities, adds further evidence of the high economic burden of autism spectrum disorder (ASD). Its findings suggest that medical costs average six times higher for children with ASD than for those not affected by the disorder.

The analysis, published in the Journal of Developmental & Behavioral Pediatrics, compared Medicaid information for 8,398 children diagnosed with autism with that of nearly 1.5 million children without autism for the years 2003 to 2005. It further showed that medical costs vary widely depending on whether a child with autism is also affected by one or more conditions that frequently co-occur with autism. In the study, the most common example was attention deficit and hyperactivity disorder (ADHD), which affected nearly a third of the children with ASD. The cost of medical care for a child with both autism and ADHD averaged about 30 percent higher than care for a child with autism alone. Read more at http://www.autismspeaks.org/science/science-news/more-evidence-autism%E2%80%99s-financial-toll

Changing Interventions, Part I: Transitioning Out of Intensive ABA

2012-01-31T11:50:00.000-08:00

Nicky has been getting various ABA based interventions since he was diagnosed, which means our entire family has been getting ABA since he was diagnosed! Now his team is saying he's had these services too long. Combined with CA in budget crisis, well they have to move the kids forward. They are nudging us toward a new model "Life Skills" described as more flexible than our current program. Flexible??? What does that mean? More flexible, for who? Does it mean a lower grade services provided by staff with less skill? Does it mean we're on our own now? Does it mean this is his plateau? Does it mean he will lose his structure and regress?

I Don't Want to Change!!!!!!!

I know we've been working toward this moment. We've changed his school program to be life skills based, we took him off the diploma track and my team says this will be good.

I'm nervous, anxious and feeling ton's of uncertainly. I'm not sure how much of my response is rational and how much is just my visceral reaction to change with some random fear thrown in. If it's fear, am I afraid for him or am I afraid for me? Maybe I'm not sure if I will be able to handle it.

One things for sure, this journey has taught me I don't like change! They say our kids become prompt dependent, maybe I'm support dependent. Ugh!!! I'll keep you posted.

I'm Sleeping Alone....Mom man's up!

2012-01-30T13:04:00.000-08:00

Part 3 of 3
We did it! It only took 10 years, but Nicky is no longer going to sleep in my bed!!!!!!!!!!!!!!! Last night was night number 4 of "No Mommies Bed". I couldn't believe it. I told him to go right into his bed, not Mommies bed, and he did. He did, he really did! No tantrums, no getting stuck in a loop because he was filled with anxiety he couldn't' fall asleep. He just walked right in his room, engaged in his usual before bed chatter and that was it. He got in bed and went to sleep.

This is just what I needed to feel good about pushing him...guilt free...to the next stage.

Part 2 of 3
http://autismdaybyday.blogspot.com/2012/01/sleeping-alonegetting-nicky-out-of-my.html

Part 1 of 3
http://autismdaybyday.blogspot.com/2012/01/mom-in-mirrorthe-biggest-challenge.html

Sleeping Alone...Getting Nicky out of my bed

2012-01-29T06:30:00.000-08:00

I DID IT!!! Two nights in a row I've out negotiated Nicky and he went to sleep in his bed instead of mine! This has been a long journey. First he slept all night in my bed then he began to sleep most of the night in his bed... less two exceptions. One, he had to fall asleep in my bed and then be moved to his bed, which is not so easy since he's my size. Two, when he wakes up - with the sun - his first move is to come into mommies bed!

So I'm two for three. If we keep this up he'll be in his bed all night before he turns 14! May not sound like much, but it's been rough and I'm darn proud of both of us :)

I Love Reading Your Comments!

2012-01-27T21:50:00.000-08:00

I just spent the past hour reading YOUR comments. You are all so amazing, kind, insightful and caring...wow! Please keep commenting, it's your words that bring perspective and depth to each post. Please know, if you want me to respond back or connect directly email me at autismdaybyday@gmail.com, I'm not so good at responding to comments in a timely manner.

D

Mom in a Mirror...The biggest challenge

2012-01-26T20:21:00.000-08:00

"If you treat your son like he's autistic, instead of treating him like a child, a boy, a person, YOU, not his autism, will be the greatest barrier to him reaching his potential".

THEN....
When Nicky was 21 months his pediatrician referred us to a Dr. Snodgrass in search of a diagnosis. I remember thinking; with a name like that he'll be a dinosaur filled with old school ideas. I managed to convince myself not to like him before we even met and I wasn't disappointed. He came in the exam room and he was indifferent. A quick hello to mom and dad and then he began to speak his observations of Nicky into his handheld tape recorder instead of addressing us. I remember little of what he said into his recorder, but I do remember when he decided he was done, he turned to us and said "I'm not sure if he has autism. I would not diagnosis him at this age. No matter what happens saying he has autism and treating him like he's autistic could be the worst thing you could do." Then he excused himself and left the room. There we stood feeling frustrated and more confused. It was years later that I understood what he was saying, and his profound advice became one of the treads that has run through our entire journey. He was saying "If you treat him like he's autistic, instead of treating him like a child, a boy, a person, YOU, not his autism will be the greatest barrier to him reaching his potential". He was challenging me to keep my focus on Nicky and to not let my parenting or his life be defined by the boundaries imposed by the diagnosis of Autism.

NOW....
The most consistently, complicated and heartfelt challenge of parenting Nicky is trying to tease apart when I should parent him like any other boy, when I need to parent him as a boy with autism and when am I making excuses for his or my behavior because he has autism? I have to look in the mirror and honestly ask myself "Am I part of the problem or the solution? and "Are my decisions pushing Nicky forward. treading water or holding him back?.

This question has never been more important than it is now, during puberty. Nicky is officially on his way out of boyhood and into manhood and I'm emotionally tied to my little boy. But, it doesn't matter that he's still young, his body is becoming a grown man and that's how the world will see him. A man who's jumping, grunting, humming and touching - who we could make excuses for in the past - is now just frightening to people. It kills me, but I see the fear on peoples faces when he comes up to them to fast or starts jumping and making loud unintelligible sounds. I have to face that Nicky isn't a little boy anymore. This is the time when there are no excuses. Society will not excuse his inappropriate behaviors and neither can I.

It's time for the mama to toughen up and Man UP!
Wish me luck.

Now I Get It!!!

2012-01-24T11:28:00.000-08:00

"Wisdom is nothing more than healed pain." –Robert Gary Lee

Great quote, thanks Robert. Gee now I know why folks say I'm so wise! I've had lot's of pain, resulting in wisdom and lot's of healing resulting in happiness. Not a bad deal in the end. Woohoo!!

News Alert: New Autism Definition Could Exclude Many

2012-01-20T15:31:00.000-08:00

This in the news today. Can't let this one go by with out an opinion. There's been lot's of chatter about this change and it's always concerned me because I know "If you've met one child with autism, well you've met one child with autism" and that's all. Children present differently, diagnosticians diagnosis children differently and in the end I think this will inevitably disenfranchise more children who rely on schools and state support, by pushing them out of the only systems of care available to them. There are documented differences in the successful diagnosis and treatment of children with ASD based upon race and economics. http://autismdaybyday.blogspot.com/2011/12/warrior-parents-fare-best-in-securing.html I believe the narrowing of the diagnostic criteria will only broaden the gap and deepen the inequities of an already strained and imperfect system. What do you think?

New Autism Definition Could Exclude Many

A panel of experts from the American Psychiatric Association re-evaluating the definition currently published in the “bible” of psychiatry, the Diagnostic and Statistical Manual of Mental Disorders, which is used to determine treatment, insurance coverage and access to services for a variety of mental illnesses.

That definition includes a number of disorders under the umbrella of autism spectrum disorder, including autism disorder, Asperger’s disorder and pervasive development disorder not otherwise specified, which usually includes people who don’t fit neatly into the other categories of autism. Currently, people must show at least six out of 12 possible behaviors to be diagnosed as autistic.

According to a report published Wednesday in the New York Times, proposed changes to the definition for the new DSM edition, slated to be published next year, would exclude Asperger’s and PDDNOS and consolidate autism diagnoses under a narrower category of autism. The person would have to show three deficits in social interaction and communication and two repetitive behaviors, a stricter set of criteria.

Many autism experts support the proposed changes, saying they will make it far easier to diagnose autism.

“Distinctions between the current subtypes are difficult to make, and do not necessary have differential implications for treatment. The line between PDDNOS and autism is often blurry, as is the line between Asperger’s disorder and ‘high functioning’ autism,” Wendy Stone, director of the University of Washington Autism Center, told ABC News. “Even well-trained researchers and clinicians using standardized measures may not agree on which side of these ‘lines’ an individual may fit.”

Experts say the changes will probably also arrest the rate of autism diagnoses, which have been rising sharply in recent years. The Centers for Disease Control and Prevention estimates that one in 110 children in the U.S. has autism under the old definition.

Dr. Fred Volkmar, director of the Child Study Center at the Yale School of Medicine, led a team of researchers who analyzed data from a 1994 study testing the criteria used in the current edition of DSM. According to a statement from Yale University, the researchers found that half of the people diagnosed with autism in that trial would no longer merit a diagnosis under the new proposed criteria.

In the statement, Dr. Volkmar emphasized that these preliminary findings suggest that “only the most cognitively able” would be excluded from an autism diagnosis.

Lori Warner, director of the Hope Center for Autism at Beaumont Children’s Hospital Center in Royal Oak, Mich., told ABC News that these cognitively able, ‘high-functioning’ autistics still require a number of treatment and support services.

“People tend to think that the more severely impacted children need the most services. But often these high-functioning individuals with enough help could either move out of the spectrum or live more functional lives with dignity,” Warner said. “If the Volkmar group is correct, I’m very worried for that segment of families.”

If patients lose their diagnosis status, they might not be able to get the treatments and services provided for autistic patients and their families, which often require a diagnosis to qualify for insurance coverage, special education and other assistance.

“Really, in a lot of states, you need that diagnosis in order to have treatment covered. If you don’t have that diagnosis, you’re going to try to pay out of pocket or you have no access to these services,” Warner said. “It could be devastating for a lot of families.”

Autism Check List: A Complex Diagnosis

2012-01-07T07:00:00.000-08:00

Most of us know, but there's always someone other there who needs to learn. So I'm posting

A recent ASD checklist from the LA Times series I've been sharing. Knowing how critical early intervention is I felt compelled to share this easy tool.

Autism Check List: A Complex Diagnosis

There is no blood test or other biological marker for autism. Doctors rely on their own observations and what parents tell them. Psychiatry's guidebook, the Diagnostic and Statistical Manual of Mental Disorders, lays out the criteria. Many autistic traits and behaviors are seen in children without autism or with other conditions. Only in sufficient numbers and specific combinations do they add up to a diagnosis on the autism spectrum.

Stories: Discovering autism

The three most common diagnoses on the spectrum are autistic disorder, Asperger's disorder and — for children who don't qualify for those — pervasive developmental disorder not otherwise specified (PDD-NOS). As this interactive checklist illustrates, there are many ways to arrive at each, and how a child is classified can amount to a judgment call. Answer questions by clicking below or select a hypothetical case to explore how a diagnosis is reached.

http://www.latimes.com/news/local/autism/interactive/

Inclusion Films opens doors in Hollywood

2012-01-05T20:39:00.000-08:00

Several years ago I sat amazed, excited and encouraged as Iwatched Nicky and other children tackle acting class ASD style. I enjoyed aspecial kinship with the other parents - who with me - were stepping out of therecognized autism treatment box and I felt nothing but appreciation for JoeyTravolta and others who lead the program “Actors for Autism”. Sadly the programNick participated in shut down, but I knew Joey's dream would keep him goingand it did. Last week this article appeared in the entertainment section of theLA Times. I'm so excited I just had to share and spread the word. GoJoey!!!!

On Location: Inclusion Films opens doors in Hollywood

http://latimesblogs.latimes.com/entertainmentnewsbuzz/2011/12/on-location-inclusion-films-opens-doors-in-hollywood.html

News Alert: Chasing Recovery, LA Times

2011-12-18T06:30:00.000-08:00

DISCOVERING AUTISM - from the Los angeles times

Families cling to hope of autism 'recovery'

An autism treatment called applied behavior analysis, or ABA, has wide support and has grown into a profitable business. It has its limits, though, and there are gaps in the science.....

http://www.latimes.com/news/local/autism/la-me-autism-day-three-html,0,3438178.htmlstory

News Alert: Autism Rates by State, LA Times

2011-12-17T06:30:00.000-08:00

AUTISM RATES BY STATE

Nationally about six students in 1,000 are classified as autistic, but the rates vary widely by state. According to data reported by the U.S. Department of Education, the diagnosis is 10 times as prevalent in Minnesota as in Iowa. The map of autism rates for children ages 6-17 shows they are highest in the Northeast and on the West Coast and lowest among the Southern and Plains states.

http://graphics.latimes.com/usmap-autism-rates-state/

News Alert: LA Times Reports, Autism hidden in plain sight

2011-12-16T13:45:00.000-08:00

DISCOVERING AUTISM - Los Angeles times

Autism hidden in plain sight

Finding traces of Autism in earlier eras....

As more children are diagnosed with autism, researchers are tryingto find unrecognized cases of the disorder in adults. The search for themissing millions is just beginning.

http://www.latimes.com/news/local/autism/la-me-autism-day-four-html,0,6403471.htmlstory

Autism boom: an epidemic of disease or of discovery?

2011-12-14T17:42:00.000-08:00

DISCOVERING AUTISM

Autism boom: an epidemic of disease or of discovery?

Autism rates have increased twentyfold in a generation, stirring parents' deepest fears and prompting a search for answers. But what if the upsurge is not what it appears to be?

http://www.latimes.com/news/local/autism/la-me-autism-day-one-html,0,1218038.htmlstory

Warrior parents fare best in securing autism services

2011-12-13T17:18:00.000-08:00

This just published today in the Los Angeles Times

Finally statistics confirm what so many families have known; when it comes to services

all things are not equal. Areva Martin and I formed Special Needs Network, because we saw first hand how families were being impacted and why we need groups to teach advocacy to families living in under-served communities.

Warrior parents fare best in securing autism services

Can Ecstasy Treat Autism?

2011-12-07T12:06:00.001-08:00

Can Ecstacy treatautism?

http://www.alternet.org/health/153334

Research shows Ecstacy increasesempathy and enhances communication by producing playfulness, friendliness andloving feelings.

This just in...if anyone out there has any knowledge pleasecomment.

"Food the Experts Won't Eat"

2011-12-06T13:01:00.001-08:00

Autism, like all auto-immune illness's has an environmental trigger and I'm pretty sure the food we eat is one of them! We all know there's crap in the air, in our food but there's nothing like reading the facts in black and white, written plain and simple.

I just read "Food the Experts Won't Eat" and it was beyond scary, I'm amazed we are not all sick! Nicky and I won't be eating these foods EVER from this day forward - anytime I can avoid them!

http://wakeup-world.com/2011/10/06/7-foods-experts-wont-eat/

Diploma Track and a Certificate; What’s the difference and why does it matter?

2011-12-01T06:30:00.000-08:00

“Even if Nicky is the best reader or mathematician in his grade, itwon’t matter if he can’t get safely across the street, and right now hecannot. That said, my priority is not Nicky graduating with a diploma.” mom

Diploma Track and a Certificate;What’s the difference and why does it matter?

I overheard two conversations; first was a family upsetbecause they didn’t know there was more than one "track" and another was a family who pulledtheir son off the Diploma track in 10^th grade when they learned the difference. Seemed to me if people were thisexcited, it must be an important part of the conversation I needed to have before Nicky hit high school. I askedaround, and here’s how it was explained to me. If anyone has any additional information..please email me or leave a comment. The difference betweencertificate and a diploma when a student exits High School is:

Ø Both a High School of Diploma and Certificate ofCompletion allow students to participatein the high school graduation ceremony.

Ø The Diploma track is the standard curriculum ingeneral education. It has set courses (math, English, science, foreign languageetc.) which all students are required to take.

Ø Graduation with Certificate is based upon thestudent opting out of the Diploma track for an “Alternative Curriculum”. When a child in enrolled in “AlternativeCurriculum” the IEP team has flexibilityto schedule classes based on a student’sindividual needs, which can include Community Based Instruction (CBI)

Ø A Certificate of Completion – is not a documentpresented to get a job, or used to get into college.

Ø Students on the diploma track will have adocument to show potential employer’s colleges and universities that theycompleted the mandatory requirements of high school.

Ø If a student is on the diploma track and pass’s(even with all D’s) Public school is no longer responsible for the studentseducation beyond 12^th grade. As soon as you get your diploma you areexited from the public school (that’s why the prom and activities are beforethe diploma). The public schooldistricts are no longer your resource for education.

Ø From age 18 diploma track students exited fromhigh school will be rely on other stateresources, department of rehab, regional center for educational/vocationalsupports.

Ø Individuals with an IEP, enrolled in analternative curriculum can stay in public school system until age 22 or untilthey receive a diploma, whichever comes first.

Ø 18 year old students walk with their peers forgraduation, moving forward they go into a post -secondary program, utilizingschool district resources/funds.

Ø Public schools tend to have the best resourceswhen post-secondary students will still get 7.5 hours of instruction. (Unless you go to a workshop or day center)

Conclusion for this family: Nicky isnot on the “Diploma” track. My priority is not Nicky graduating with a diploma.Even if Nicky is the best reader or mathematician in his grade, it won’t matterif he can’t get safely across the street, and right now he cannot. For us,opting for the alternative curriculum lets us focus on life skills directlyrelated to his independence while he is in high school. I would like him to have the choice to remainwith our school district until age 22, so he can move into LAUSD’s post-secondaryprograms and access educational programs designed to move him towardindependent while meeting his individual needs. The best way for us to do this it to jump off the Diploma track and create a curriculum where the priorities in his education are classes/programs/activities that directly impact independence.

Growing Up Hairy!

2011-11-30T09:36:00.001-08:00

Yikes, and I thought Nicky was growing hair early!

More proof of puberty and the disappearance of my little boy...hair is budding everywhere. His upper lip looks dirty, his leg's are getting hairy, and today I looked at his hands and they are starting to look like "Man" hands, not boy hands. I'm just not ready...not that there's anything I can do about it. Just makes me sad. Ugh.........

iPad Continued!

2011-11-25T15:03:00.001-08:00

Quick Update on my iPad research. As of today..seems the best way to go is a refurbished iPad. The 16GB is plenty for his needs. I'll get WiFi but not AT& T subscription. I'm still checking.

News Alert: Fresh Dispute about MMR vaccine “Fraud”?

2011-11-19T07:00:00.000-08:00

A conversation that is not over for everyone…at least notyet.

http://www.nature.com/news/2011/111109/full/479157a.html

iPad, Apps, Autism, Holidays...Am I the only one confused?!

2011-11-18T12:09:00.001-08:00

I’ve read and seen so much about iPad& tablet “Apps” helping our kids learn and communicate. I don't want my kiddo to miss out, but I've hesitated because he's a computer obsessed kid. I have to be sure how we are going to use it, when he will use it and where. IfI don’t, I could just add one more obsession to his list, one more thing forhim to perseverate on and risk missing out on the benefits.

My first step: to learn about the apps available. I found two resources – so far – that give the most info in one place, bothlinks are below. I found a book onAmazon (that’s inexpensive) called Apps for Autism that lists more than 200apps and how they work and Autism Speaks has listed app’s.

Amazon.com: Customer Discussions: Apps forAutism: An Essential ...

www.amazon.com/Apps-Autism-Essential-Effective-Communication/...

Apps for Autism: AnEssential Guide to Over 200 Effective Apps for Improving Communication, Behavior, Social Skills, and More! forum ...

http://www.autismspeaks.org/family-services/resource-library/autism-apps

Next I’m going to look into tablets. Does it have to be an iPad? Will the new $199.00 Amazon Tablet do the trick? What about the new iPadscheduled to come out early next year that’s supposed to be less expensive? What are the factors that determine what padis best? If anyone already knows theanswers to these questions pls email me(autismdaybyday@gmail.com) and I’llpost your information.

Autism tied too many brain cells

2011-11-09T16:34:00.000-08:00

Study: Autistic Children Have More Brain Cells

There's growing evidence that the brains of autistic children arevery different from the brains of other youngsters. Now a new study that foundan excess of brain cells in children with autism comes closer topinpointing the origins of the condition: in utero versus in toddlerhood.

In research reported in the Journalof the American Medical Association (JAMA), scientists at the Universityof California, San Diego, found that autistic children have about 67% morenerve cells in a part of the brain known as the prefrontal cortex than childrenwithout autism. The prefrontal cortex is involved in processing social skills,communication, cognitive functions and language — all areas in which autisticchildren often show abnormal development.

Lead researcher EricCourchesne studied the brains of seven autistic boys between the ages of 2and 16 after their death and compared his analysis to the brains of sixunaffected boys who died at similar ages. The excess of neurons was a bit of asurprise since in most cases, deficits in social skills — like the onesautistic children typically have — are linked to less, not more, nerve tissue.

“When we think of the inability tohandle complicated information, we usually think of too little in the way ofconnections or brain cells,” he says. “But this is just the opposite.”

MORE: Risk of Autism Is FiveTimes Higher in Low-Birthweight Babies

Functionally, however, the autisticchildren may have been suffering from a dearth of proper nerve connectionssince the overabundance of neurons may have led to difficulty in their abilityto connect and communicate with each other. That situation, says Courchesne,could "lead to pathways that slow down or prevent normal activeinteraction between different regions of the brain.”

Social interaction andcommunication, for example, require that nerves from distant portions of thebrain link up. Think of too many nerves like an overgrown forest that couldchoke some of these critical neural bridges.

Equally significant is the fact thatthe excess of neurons in the prefrontal cortex aren't formed after birth, butduring early development, in utero. That suggests that the changes responsiblefor autism are occurring much earlier than scientists had thought.

MORE: Could the Way We Mate andMarry Boost Rates of Autism?

“Knowing that we have a specifictype of defect that occurs very early in development really helps us to focusand sharpen the next steps in research to determine what caused the excess,”says Courchesne. And hopefully find new treatments that can help children andtheir families cope better with the symptoms of autism.

The Little Tricks & Steps to Independence #1 "Cooking"

2011-11-05T14:34:00.000-07:00

Problem: Safe Cooking
Solution: Counter Top Grill

It was 6:00am when I walked into the kitchen to see three eggs broken on the stove and chicken nuggets in the stove top well with flames all around! I got shivers as I contemplated what could have happened if I didn't walk in when I did. Once I passed panic mode I could see the up side; Nicky was moving himself toward independent. He wanted to make his own breakfast.
The challenge; How to build on his interest for being independent, without setting the house on fire!?

Nicky's first attempt at cooking for himself!

Solution: I went out and purchased George Forman style counter top grill complete with timer and auto "off/on" switch. The timer shuts off ALL the heat, if he forget's the food, and if he set's the timer for too long, the worst that can happen is the food cooks to death. There are never FLAMES involved...unlike my stove, toaster oven or microwave. In a very short time Nicky was cooking almost all the foods he loves; chicken nuggets, tater tots, potato wedges, sweet potato slices, grilled cheese sandwiches, all by himself. Less the fact that he still has to be reminded to close the refrigerator, it's been a full proof solution in our house.

How he cooks now :)

Bonus benefits

It's grills instead of frying and he makes at least one meal a day, everyday on it all by himself.
Since he hit puberty he's hungry all the time. I'd be a slave to the kitchen if he couldn't get food for himself.

Please share your independence solutions. Use comments or Email me at autismdaybyday@gmail.com. Either way I'll post and we can all share!

Nicky "Draw what you are thinking"

2011-11-05T07:30:00.000-07:00

Nicky was given a coloring sheet titled "Quieting the Mind" in Church. The direction, "Draw what you are Thinking?" with no help, no prompting.

Before & After, who knew........... He made me cry".

Things I Know For Sure

2011-11-03T19:10:00.000-07:00

Things I know for sure
Nicky hears everything
Nicky takes in more than I know
Nicky memorizes images, words, video's, directions, locations and just about everything he pays attention to.

The down side is he's STINGY!. He takes stuff in, but he doesn't let much out. I don't get confirmation about what he knows until he decides to share. The upside, those occasional wonderful surprises that take my breath away. Sometimes it's the clear sentences complete with humor even sarcasm; delivered perfectly, when I didn't even think he was paying attention to what was happening around him. Or a moment when I reintroduce a concept, that failed when first introduced, and he picks it up as if it was never a challenge. For example, I remember when he signed the entire alphabet perfectly, without having even done it before, and without any of us knowing where he learned it. After lot's of research we learned that he has been exposed to a "Sign Your ABC's"poster in his 1st grade classroom . He memorized it and five years later, he began signing perfectly!

Life's Ups and Downs...Literally

2011-11-03T08:14:00.000-07:00

I first saw this video several years ago. When I got it again today, I was just as touched and reminded once again that it's all about perspective. I hope you'll watch it and feel encouraged and amazed too.

http://www.youtube.com/watch?v=H8ZuKF3dxCY&feature=related

2011-11-02T08:09:00.000-07:00

HAPPY HALLOWEEN

Facial Features and Autism

2011-10-25T10:21:00.000-07:00

Autistic Children have distinct facial features, study suggests.

http://vitals.msnbc.msn.com/_news/2011/10/21/8418826-autistic-children-have-distinct-facial-features-study-suggests#.TqbIJzIUG8k.email

Aggression, Mom and Self Defense…makes since.

2011-10-24T11:41:00.000-07:00

Nicky is big. He is 13, growing every day and is almost myheight and he’s stronger than I am. Yesterday,when he was angry he came after me, grabbing my hair and pulling me down to theground. It’s happened before and eachtime I’ve wanted to think it would not happen again.

People telling me that I needed to dosomething because he was getting big, didn’t help me. My feelings of inadequacy that I couldn’thandle it, my determination to handle it, combined with my fear of what it might mean for his future were toostrong. So, I dug in my heals and kept thinking I could talk my waythrough it. I would handle it my way. Today a male friend said "ALL boysin puberty get aggressive, not just boyswith autism. They have so much goingon and they don’t always have control over their bodies full of male hormones. This isn't just autism it's boy stuff." For some reason it was the idea, that hisbehavior was somehow typical, that gave me permission to address the problem. So later in the day I learned 3 self-defensemoves and when I get them right Nicky will know that this mom is in charge andI will be able to keep me safe and keep him safe.

I'm reminded of what I was told by a neurologist who didn't want Nicky to get a diagnosis of autism when he was two. He was afraid of what happens when children are labeled. He had seen the diagnosis keep parents from parenting and teaching ASD kids the same things that all kids need to be taught. I remember what he said to me. "You have to remember that he has autism he, but it is not who he is. He is a boy and your challenge will be to see him first as a boy, and secondly as a boy with autism. If you can't do this, you will get in the way of his development, it will be you who does him the greatest disservice. At the time I thought his comment was profound, but it didn't apply to me. Seems I was wrong.

Thank you Lee and Julius :)

New Insight into Autism and Intestinal Problems

2011-10-14T18:57:00.001-07:00

New Insight into Autism and Intestinal Problems

As parents have long reported, many children with autism experience severe gastrointestinal (GI) problems and the associated discomfort can worsen behavior. Researchers, in turn, have found a strong link between (GI) symptoms and autism severity. Some experts have even proposed that toxins produced by abnormal gut bacteria may trigger or worsen autism in some children.

Now scientists at Columbia and Harvard universities report that the GI activity of children with autism differs from that of other children in two key ways:

1) Their intestinal cells show abnormalities in how they break down and transport carbohydrates, and

2) Their intestines are home to abnormal amounts of certain digestive bacteria. (Bacteria play an important role in normal digestion. But abnormal levels of certain bacteria have been associated with digestive problems and intestinal inflammation.)

The two findings are likely related, the researchers propose. Alterations in how intestinal cells break down carbohydrates can affect the amount and type of nutrients that these cells provide to intestinal bacteria. This, in turn, may alter the makeup of the intestine’s normal community of digestive bacteria--with ill results.

“The findings are consistent with other research suggesting that autism may be a system-wide disorder, says study co-author Mady Hornig, M.D., director of translational Research at Columbia University’s Center for Infection and Immunity. The study is available through the online scientific journal PLOS-One.

The findings may also explain why many parents of children with autism report that special diets and probiotics (nutritional supplements containing “good” bacteria) improve not only their children’s digestion but also their behavior, the researchers note. However, they caution that further study is needed as their findings were based on tissue samples from a relatively small number of children (fifteen with autism and seven with typical development).

Autism Speaks co-funded the study along with the National Institutes of Health, Google.org and the Department of Defense. Recognizing that GI problems affect many children and adolescents with autism, Autism Speaks recently granted a major Suzanne and Bob Wright Trailblazer Award for research into the biological mechanisms of GI disorders in ASD. The research will include clinical testing of a new probiotic therapy that has shown promise in restoring GI function.

“GI problems are a common and distressing concern for many children and adolescents with ASD and their families,” explains Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. “These conditions are not only a strain on the health of the children affected, GI problems can seriously interfere with their ability to participate in and benefit from activities of daily life, education and therapeutic activities.”

A Good Week; Sacramento and the White House Act on Autism

2011-10-14T18:57:00.000-07:00

While we were working hard in CA, for Governor Brown to pass Senator Steinbergs Autism Insurance Mandate Bill, President Obama was supporting our families in Washington.

All in all a good week for our families.

Steinberg Bill to Mandate Autism Treatment Coverage PASSES ...

and ........

The White House Blog

A Father Celebrates Today's Reauthorization of the Combating Autism Act

Posted by Michael Strautmanis on September 30, 2011 at 04:50 PM EDT

Micahel Strautmanis, his wife and their three children

Every single day, I am proud and awed to be working for our President. But, some days simply take the cake. Just a few short months ago, I had a couple of those days. On April 1st, President Obama issued the first ever Presidential Proclamation to mark World Autism Awareness Day. Later that month, I had another special moment when Valerie Jarrett and Health and Human Services Secretary Kathleen Sebelius announced that the President and his administration fully supported reauthorization of the Combating Autism Act (CAA). As a father of a child on the autism spectrum, these were extraordinarily meaningful moments to me.

Today, President Obama signed into law the reauthorization of the CAA. I was once again reminded of the honor that it is to be working for a President who gets it -- he knows that persons on the autism spectrum are at the heart of this issue.

Nearly one percent of American children are on the Autism Spectrum, and this reauthorization continues important investments in research, early detection and support and services for both children and adults. Without it, critical research would have been severely hindered and in some cases halted. Millions of persons on the Autism Spectrum would have been deprived of the potential breakthroughs resulting from valuable research, and of the chance to live independent and productive lives.

But, with the stroke of the President's pen, our work continues. Work that will advance education research that supports early diagnosis for children on the Autism Spectrum. Because we all know, the earlier we can diagnose autism, the better we can provide supports and services and work with children so they are prepared to learn when they enter school.

But we would not have gotten to today were it not for a diverse group of people working together. Members of Congress, advocates on the Autism Spectrum, parents and grandparents of children with autism, and disability advocates – all played a key role in achieving this goal.

I read something today on a blog written by a mom with a daughter with autism that sums it up well. She spoke of our community and said, "[t]his community has meant everything to me. Without it, I would not have found my voice. Without it, I would not have written to the president, nor found myself headed to the White House to talk about our children. Without it, I would not wake up every morning knowing that I am not alone."

As we mark another success with this signing, President Obama and I know firsthand that for people on the Autism Spectrum and their loved ones, thinking about autism does not stop today. Since my son is on the Autism Spectrum, I fully understand that autism impacts people every day. President Obama knows that the best way to help my son and the thousands of American children and adults on the Autism Spectrum is to remain committed and focused so that tomorrow, and the day after, and the day after that, we'll continue to do better.

Michael Strautmanis is the Deputy Assistant to the President

See more about Disabilities, Health Care

Hope in a Clinical Trial

2011-10-06T07:43:00.000-07:00

Today I'm off to UCLA to meet with a doctor about a new clinical trial aimed at reducing repetitive behaviors.

My feelings are all over the place; uncertain, skeptical, hopeful. I'll let you know. If any of you have had success in a trial please let me know.

URGENT ACTION ALERT for CALIFORNIA FAMILIES

2011-10-04T16:23:00.000-07:00

October 4, 2011 URGENT ACTION ALERT!

SB 946 IN DANGER OF VETO BY GOV. BROWN. TELL HIM CHILDREN WITH AUTISM DESERVE INSURANCE REFORM!

Dear California Autism Advocate:

We are hearing that the insurance industry is pressuring Governor Brown to VETO SB 946. A veto would allow insurance discrimination to continue against children with autism in California.

Governor Brown's office is saying they are not hearing from enough people in the autism community.

If you want this California, you must turn up the heat on Governor Brown - today! You need to send an email to let him know you want him to sign autism insurance reform now. Get everyone you know in California to help magnify your voice.

Here is How YOU Can Help:

1.) ASK GOVERNOR BROWN TO SIGN SB 946 and ATTEND THE WALK in SACRAMENTO! We get you started here, but take a minute to personalize your message.

2.) SHARE THE NEWS. Anyone you know who lives in California can help - they do not have to have a child with autism so post this to your Facebook:

"URGENT ATTN CALIFORNIA FRIENDS! I need your help to ensure that Gov. Brown DOES NOT veto the autism insurance reform bill, SB 946, by sending him an email now. He cannot allow insurance discrimination to continue against children with autism. Please go to the link below & take action. Share on your page & write DONE so I can thank you! We want CA to be #28!"

LINK TO: www.autismvotes.org/BrownSignSB946.

3) LET GOVERNOR BROWN HEAR YOUR VOICE ON HIS FACEBOOK PAGE. Visit Governor Brown's Facebook Page, LIKE his page, then write directly on it that you want him to sign SB 946 into law and end autism insurance discrimination in California. Ask him to attend the Walk in Sacramento on October 9th so we can thank him when he does!

To learn more about this legislation, please visit our California page on the Autism Votes website at:www.autismvotes.org/California.

Tell Governor Brown to stop listening to the health plans and do what is right for California families!

Email! Email! Email!

An autism treatment worth funding

2011-09-30T13:46:00.000-07:00

Los Angles Times Editorial in Support of SB 946

http://www.latimes.com/news/opinion/opinionla/la-ed-autism-20110930,0,5602889.story?track=icymi

------------------------------------------------------------------------------------------

Editorial

An autism treatment worth funding

A California bill would require insurance companies to cover the cost of applied behavioral analysis for the autistic. It's good policy.

State law requires insurers to include coverage for autism in comprehensive healthcare policies. Now, lawmakers want to go a step further, requiring coverage of a particular autism treatment: applied behavioral analysis. Insurers are resisting. They don't question the effectiveness of the therapy; they just say it doesn't fit the definition of "medical" treatment. Their position reflects how crucial parts of the healthcare system are wedded to the status quo, regardless of what's best for patients. State lawmakers have passed a bill to overcome the insurers' resistance, and Gov. Jerry Brown should sign it.

Researchers have found that a person's brain makes crucial internal connections partly in response to genetics and partly in response to interactions with the environment. Autistic children don't interact in the usual way, so their brains don't make the proper connections. Applied behavioral analysis attempts to provide the interactions they'd been missing, encouraging their brains to adapt and make the right connections. Studies have shown that these techniques can help autistic individuals of any age, for example by teaching them to communicate effectively. And when preschoolers receive an intense program of applied behavioral analysis, they may make so much progress that they no longer need special education classes.

The therapy is offered to preschoolers by regional centers for the developmentally disabled, which are jointly funded by the state and federal governments. But the regional centers treat only the most severely disabled, leaving many parents to come up with the tens of thousands of dollars needed to pay for private care. Those who can't must rely on the special education classes provided by increasingly strained school districts.

The therapy, however, doesn't look like medical treatment. Although it's prescribed by a doctor and overseen by a board certified professional, it can be administered by students or family members. That's education, not medicine, insurers say. But it's a form of education that's designed to solve a medical problem, not improve grades or test scores. That's why it should be considered medical treatment.

Late in the last session, lawmakers rushed through S 946, by Senate President Pro Tem Darrell Steinberg (D-Sacramento), to require most private health insurance policies to cover applied behavioral analysis for the full spectrum of autism disorders. Twenty-seven other states already have similar requirements. The mandate would be temporary, avoiding any potential conflict with the minimum coverage standards that the federal government is slated to issue in 2014. Under the healthcare reform law, though, those standards must include coverage of "behavioral health treatment."

Insurers warn that the measure would add $200 million to the annual cost of health insurance; advocates say the change would increase premiums by less than 1%. The more children who receive the therapy early, however, the more costs from autism that schools, the state and taxpayers will be able to avoid down the road. Policymakers should shift the incentives in the healthcare system so that they reward the most efficient and effective paths to good health, rather than staying locked in a status quo that is slowly bankrupting the country. Requiring insurers to cover an unconventional but effective treatment for autism is a part of that effort.

Disability Advocates File Lawsuit Against State

2011-09-29T12:41:00.000-07:00

I've been waiting to see who would take the first step to challenge our states actions which are dismantling our critical entitlement system. Thank you UCP San Diego for stepping up! I know there are always two sides to every story, please comment on this post so we can all benefit from different perspectives.

Here's the story and the link.................

http://www.signonsandiego.com/news/2011/sep/28/disability-advocates-file-lawsuit-against-state/

Disability advocates file lawsuit against state

Advocates for Californians with developmental disabilities, led by UCP San Diego (United Cerebral Palsy) and the Arc California, filed a lawsuit against California Wednesday alleging it is violating federal and state law by failing to adequately fund services needed by individuals with developmental disabilities.

The suit, filed in Sacramento against the California Department of Developmental Services and the Department of Health Care Services, contends that the state’s failure to fund programs has hurt community service providers, whose reimbursement rates have been frozen since 2003. Many community providers have been forced to limit services or close.

In San Diego, a UCP adult day care center in the College Area was forced to close last year for lack of state funding, said Dave Carucci, executive director of UCP San Diego.

“With limited funding, we’re not able to provide the quality of staff and service we need to provide,” he said. “We understand it’s a tough time in California, but we’re saying enough is enough.”

The lawsuit accuses the state of violating the Federal Home and Community Based Service Providers (HCBS) waiver program by reducing rates and reimbursements without federal approval and without considering federally required safeguards.

The suit also contends that the state violated California’s Lanterman Act, which guarantees individuals with intellectual and developmental disabilities the right to obtain the support services necessary to live as independently as possible in their own communities.

The California Department of Developmental Services issued a statement responding to the lawsuit.

“Given the size of the budget shortfall, difficult decisions are needed,” it said. “However, consumer health and safety remains our highest priority. California is the only state in the nation with an entitlement to services for persons with developmental disabilities. Beyond that, we do not comment on pending litigation.”

The suit does not seek monetary damages, but asks for an injunction to stop the state from freezing and reducing funding of programs for the 245,000 Californians with developmental disabilities.

“It’s not right, fair or legal and must be stopped,” Carucci, said. “The state’s neglect has left Californians with developmental disabilities at great risk. Their health and safety is in jeopardy.”

It's All About Perspective LOL!!

2011-09-27T21:27:00.000-07:00

Today I had a new person come over to help me clean the house. The first thing I did after "hello" was tell her about Nick, so she would be prepared for...well whatever. I'm glad I told her because Nick kept going up to her and touching her belly. She thought it was because she had a tummy and she assumed Nick thought she was pregnant. I heard her say "no baby". Truth be told Nick just likes to poke tummies!.

We cleaned and before she left she shared "I'm so impressed, he's so independent. Thank you so much for telling me he has autism. I worked for one family who's son had autism. He kept hitting me, and hitting me, no one told me. So, thank you".

Paranoid or Prejudiced – Discrimination & Litigation a Tale of Two Schools

2011-09-26T16:52:00.000-07:00

“I was sofrustrated it didn’t make any sense and it was unfair, it was discrimination!.

How could our kidsattend magnet schools, which are open to all children, if transportation wasnot an option for them? The district had effectively made it impossible for kidswith issues like Nicky to attend the magnet schools – by restricting access.”

I've heard stories for years detailing how middleschool inclusion failedbecause our kids became outcasts under the academic and social pressures inmiddle school, and how success depends on the attitudes of the administrator incharge of special ed, which we never control. That said, leavingthe quasi safe environment of elementary school for middleschool, was not a change I welcomed. I took middle school seriously, andI applied to a small K-12 magnet school from our districts “Choice’s” programand a small learning community (recommended by his IEP Team) at our localmiddle school. In reality the challenges I encountered were not the one’sI was told about, but being emotionally prepared for an uphill ride helped.

Five months of unwelcoming conversations, requests for newdocuments and assorted problems delaying the processing of his application withour local school - ended with this voice mail from an administrator “Do you really think this programwould be good for Nicholas and the other 31 students in the class?”, left on the last day of school without areturn phone number! Instead of ignoring me, we couldhave spent the last 5 months addressing their concerns about how tosuccessfully include Nicky. Any doors I had left open forthe possibility the school was simply disorganized, or the unreturned calls andrequests for unusual paperwork were not about him, were closed after hearingthat message.

I was getting really discouraged.Thank goodness I took my own advice and applied to more than one school,because the other school called and offered a slot to Nicky. I was so happy, aschool called us, they wanted him. I felt like Sally Field in her “You Like Me” Oscarspeech. I was so excited I immediately took the spot.

School started, I began requesting an IEP to address Nicky’stransportation needs. 1 month into the school year I was still spending 3 hoursa day driving Nicky back and forth. Finally, I received a letter sayingthe school district would not provide transportation. I thought Magnet schools were required by lawto provide transportation for attendee’s living outside a certain radius. I was happy to put Nicky on one of the bus’s provided for other students; hejust couldn’t ride safely without an aid. I was so frustratedit didn’t make any since and it was unfair. How could our kids attend themagnet schools which are open to all children, if transportation was not anoption for them? By refusing to provide health and safety supports to enableNicky to ride the bus, the district had effectively made it impossible for kidswith issues like Nicky to attend the school – by restricting access. Iwanted to believe it was just the result of confusion; It must be me, I wasn’tspeaking to the right people. My mission ended when an administrator wasdirected to explain the districts position to me. Our 20 minute conversationcame down to this "The district was not required to provide Nicky withsupport to ride the bus. If I wished for him to remain at this school I coulddrive him." I literally broke into tears and asked if she understood whatshe was saying to me, in effect our kids could not go to the magnet schoolsunless their parents could drive them, and how many parents could do that?. I’mspending 3 hours a day driving him. How long could I do it? Shethen asked why he wasn’t at his local school, teary eyed I replied “They didn’twant him”. I pressed on thinking I could say something, she could grabonto that would change the direction of the conversation, and she simply said “You choose this school, so you can choose to drive him or not. It’sup to you but our decision is final”.

Beat up, outraged and discouraged I found a lawyer who filed adiscrimination complaint with the Office of Civil Rights, asserting that thedistrict discriminated against Nicholas on the basis of his disability becauseit failed to provide him with the necessary accommodations he requires in orderthe access his magnet school bus transportation both to and from his publicschool program and to and from school sanctioned fields trips. Almost twoyears later it was determined that the district policy did discriminate againstNicholas and he was provided with transportation and supports.

The number of unfair things that happen to our kids defy comprehension or reason, they couldkeep me in angry, sad and tied up in knots and battles everyday if I let. Years into this journeyI’ve learned those are not the feelings I want consuming me. So I pick my battles, in an effort to leave room to be happy and live our life. Looking back, it’s pretty clear things workedout exactly how there were supposed to, and this go round I fought the right battle. Nickyloves his school and it’s a wonderful fit for him. Because it’s K-12 he’ll bethere through HS. If I had battled to get Nicky into our local school, he wouldhave been in a school where he wasn’t wanted, and we would been looking for aHS next year, and we would not have fought a battle that could help so manykids.

Thanks Nicholas for another opportunity to make adifference.

A very special thanks to our attorney Jodi Ossen Bynder of Newman Aaronson and Vanaman. If anyone has any specific questions about the complaint filed with the Office of Civil rights. Email me at autismdaybyday@gmail.com

Facing Facts: Aggression and the Real World

2011-09-10T19:13:00.000-07:00

Nick has two deficitswhich are his biggest barriers to living in the community. Idon't mean living an independent life, I mean not living in an institution. Aggressionand a lack of safety awareness will determine how included he will be insociety. He's going to be a grown man and once again, the things peopletolerate while he's little will not be accepted from an adult. Especially a bigblack man kind of an adult!

Our journey working onthese is constant, non-stop. We take little tiny steps forward and stepsbackwards, the progress is slow and imperfect, but we have made progress. There are other posts where I show the tools we've created, but this isthe first video on the topic.

I learn so much every timeI meet with ABA behaviorists, so I decided to tape a recent meeting withmembers of his behavioral team, where we talked about strategy. It's anunedited piece, in part because I don't know how to edit and I didn't want torisk taking something out that might be useful to someone :).

Here's to helping our kids.

What Do Aggression, Nicky and a Car Chase Have in Common?

2011-09-09T07:30:00.000-07:00

Nicky's aggressive behaviors (and a bunch of other behaviors we work on) remind me of police car chases. The police might be right on someones tale, but somehow the cars manage to slip away evading capture until finally they are pinned in a corner and it comes to an end. It appears to be over, but you really don't know maybe they will get free and do it again.

It's the same with Nick's aggression, spot it, chase it down, and hope for the best!. First we identify the behavior, and give it a name. Then we determine what triggers it. Then we take step after step, giving each action a name to help him know we're on to him, albeit our goal in the end is to help him recognize the behavior, and trap it in a corner where he's in control.

But while we are focused on reducing or eliminating the initial behavior he's swapping it out for another, just like the guy in the car chase turning left when you thought he would go right. It's maddening. Nicky's aggression used to include pushing, biting, hitting kicking, pinching people and destroying things when he was frustrated or angry. We have worked for years to track down the behaviors and arrest them one by one. We've made progress but damn if he hasn't just gone and found another replacement behavior! Don't get me wrong, we are making progress. It's rare that he hits people, and I'm very happy he's not hitting me, but it not so great that he's hitting and pinching himself now.

It's like a criminal who get's caught and is set free on a technicality. It's four steps forward and two steps back. So frustrating!!!!

One Down and Forever to Go

2011-09-08T07:09:00.000-07:00

We did it, and I do mean we. Evyn, Nicky and I all survived her first week away at school. It was not without it's up's and downs; one night I was so restless I just wanted to eat...I melted gooey cheese on top of garlic potato chips and got sick! Nicky couldn't sleep and he set a record for breaking the house rules and Evyn learned roommates have something in common with family...they too are human :)

Sports + Disabilities + Amazing People = Abilities!!

2011-09-06T11:26:00.000-07:00

This story from yesterdays LA Times features one of Nicky's behaviorist, Julius English. We are so proud of you Julius! It's a great story...enjoy!

Los Angeles Times; For love of the games: Examples of why sports matters

A behavior therapist with a learning disability, a blind baseball fan and a high school football player all have something in common: a love for the game.

http://www.latimes.com/news/la-sp-why-sports-matters-20110905,0,3883907.story

"Behaviors" In Action, Nicky 1, Mom & Sister 1 - Part 3 Success, Video of a Dr. Visit

2011-09-02T06:30:00.000-07:00

All my ABA training failed me in this moment (See hospital video 1 and 2) because Nicky just wasn't going to cooperate. Aften an hour of trying to connect his EEG, with the helpof three nurses we failed when home. But it's not over here we are back again with supports in the form of Nicks big sister. Nicky was working us, first me and then his sister. But in the end, his sister and the nurses get it done, while Mom - who's comfort has become the ultimate reinforcer - stays out of the room. It's funny to see how easy and fast the process goes once Nicky resigns himself.

"Behaviors" In Action, Nicky 1, Mom 0 - Part 2 - Home & Back Again

2011-09-01T10:14:00.000-07:00

We head home and nobody's happy. Nicky's frustrated, then sad. We get home, review the video and head out again. Here's what happens when we leave the hospital and head back once he's watched the video (video number 1) and talked about what happened. It's a good peek and melt down and recovery.

"Behaviors" In Action, Nicky 1, Mom 0 - Watch This Video of a Dr. Visit

2011-08-31T15:31:00.000-07:00

What happens when you combine, an ASD kid, one mom, two nurses, an EEG and a "I'm not going for it" attitude? Watch and see :)

Nick got a Flip video camera for his B-day. I decided to record a doctor visit so Nicky and I could talk about it afterwards and I could show him what was happening. When I made this decision I had no idea what an incredible teaching opportunity we would be treated to!!!

This is video number one, of three when we're at the hospital to hook him up for his 24hr EEG. He’s been doing these since he was 4, one or two times a year. Over the years we've done different things to get the job done; he's been lightly sedated, under full anesthesia, strapped in a papoose board and most recently we just used the behavioral “First this” than “……”with a highly motivating reinforcer. We always let him watch video’s to keep himoccupied while the monitors are applied to his head.

Armed with his DVD player and movie of choice I expected things to go smoothly, at least our version of smoothly. But this time Nicky just wasn't having it! This was our first trip where nothing worked. In this video you get towatch me and the nurses try everything and in the end we leave, Mom 0, Nurses 0, Nicky 1,

Next I will post: Video number 2 showing Nicky's surprise response to our departure and Video number 3 showing what happens when we return for a second try with our secret weapon...his sister! Pretty good stuff.

PS: This first video is the longest...I don't know how to edit yet.

Sister Doesn't Live Here Anymore

2011-08-30T08:13:00.000-07:00

Evyn moved into the dorm. The dog howled all night. I think she's depressed and Nicky repeats "Evyn at Hotel". Seems I did a good job preparing Nicky for the change, but for the dog...not so much :(.

Countdown…..the end of the beginning

2011-08-24T19:33:00.000-07:00

If you’ve lived with a person with autism you already know; When I fall, and I’m hurt, Nicky goes on his way. If I’m sick and can’t get out of bed, Nicky goes his way. If I’m sad and crying, Nicky goes his way. If I had a heart attack and needed help, Nicky would go his way. Not because he doesn’t love me, he does, he just doesn’t connect meaning to what he sees.

Nonetheless my life has balance. I’ve been blessed to live with Nicky and my typical daughter Evyn, who beyond being an incredible human, she’s been my buddy, my steady person, my lifeline, my safety net 24/7. She offers to bring me tea when I’m sick, she responds when I cry. She tells me I look pretty, or tired. She encourages me to sit down when she thinks I’m over doing. She asks “What can I do” when there is a problem. She calls 911 in an emergency.

In four days she moves out and begins her college journey. Gone will be the one other person in the house living with ASD. Gone will be the person who knows me and Nicky who gives me perspective, because she see's everything, and she holds nothing back.

I feel guilty that I’m feeling sad for me. At the same time, I am certain that I am happier for her than I am sad for me. I am certain that I will adapt and will learn how to enjoy things just as they are. I am absolutely positive that I want her to move on, she deserves to go and grow! But right now, as the days count down I’m pushing away the thoughts of how alien it will be and scary it will be to only have one pair of eyes & ears in the house. How empty it will feel to have no one to turn to at 3:am when Nicky’s not sleeping, how vulnerable I will be, how alone I will feel when she’s gone and how quiet the house will be!

I just keeping repeating to myself…..this is the not the end, it is the end of the beginning. I will be fine. I can handle this. I will handle this. It will be okay. All parents go through this.

First the Vacuum, then the World! Vacuum & Independence, a connection.

2011-08-20T06:32:00.000-07:00

Nicky looks about as happy as any other teenager asked to vacuum! However he’s learning more than most teenagers, he’s learning focus in ways that are critical for him to be out in the world. Right now he can’t drive a shopping cart without running into people or abandoning it. I love vacuuming; it's helps the family, Nicky earns money for things he wants and if you look closely you'll see he's learning how to stay focused on a tool, a task and his environment all at the same time. That's a BIG DEAL for him. True, enough vacuuming may take its toll on the walls he runs into, but it’s better than being hit by a shopping cart! Imagine all the things he will be able to learn once he gets this down; grocery shopping, safely riding a bike, roller skating, who knows!

A typical moment. He's as unhappy as any
kid doing chores.

I Trust We All are Special

2011-08-18T11:26:00.000-07:00

"By being yourself, you put something wonderful in the world that was not there before."

- Edwin Elliot

This is true for everyone including our kids. Nicky has touched and changed so many, just by being "Nicky". I believe our kids and those who love them are forcing a shift in social consciousness about what is "Normal", and what is "Possible" when it comes to human beings. That is something wonderful.

Colors and ASD...A Unique Perspective with Purpose

2011-08-17T17:47:00.000-07:00

Nothing with Nicky happens in developmental order, but everything has order, including colors! Check this out….

When Nicky was a little guy I couldn't get him to pick up a crayon or show the slightest interest in a coloring book. When he was 10, I introduced him to word searches to build off of his love of the alphabet and develop an age appropriate activity he could do on his own. He took to the word searches. At first he circled the words with a pencil, then pen and next he found color markers. He loved circling each word with a different color marker. He

loves all the colors of the markers. Now he's into his coloring books. (Good thing I didn't toss them all in the trash!.) But, he doesn't color like the other kids, he does it his way! ASD is so interesting. You can see how he uses all the colors in a single image from a coloring book and if you look closely at the word search you see he circles the word and marks it off the list with the same color. He's created his own color key! Amazing :)

The Ugly & Unforgivable Thoughts - Better off Dead

2011-08-15T09:00:00.000-07:00

Nicky is still young, living at home where I can care for them. It's the best option, but not promised forever. Recently I posted an article detailing abuse in centers for people with developmental disabilities in NY, now I can't let get this quote out of my mind…..

“When I first started working there, I was told, ‘Keep your eyes open and your mouth shut and you’ll do just fine here,’ ” said Mary Maioriello, a former employee at the Oswald D. Heck Developmental Center near Albany,

I feel sick every time I read one of these stories, or see a person with a DD on the street, alone or homeless. I used to look at people who had mental disabilities and I felt sorry for them. I helped in some little way if I wasn't too frightened or judgmental. But that was it, I didn't know them and they didn't have a story.

That's not how it is for me today. Now I see Nicky in every person I see who is homeless, or might have some kind of mental illness. I see what could be his future. This is the thing that scares me most, this is the reality that haunts my dreams and drives me the hardest. The truth is when I'm gone, who will really be able to care for him. Who will want to take care of him 24/7? Who will make sure that he's not just safe from the dangers of the outside world, but from the dangers on the inside world. The more subtle abuse or neglect people may not be able to see. The abuse that only happens when no one's watching. In the really dark days I think I would rather Nicky not be alive than be left on the streets or abused at the hands of others. I pray for the future, I pray for our kids, I pray for Nicky.

Puberty and Aggression a Connection?

2011-08-14T08:33:00.000-07:00

Bad week. Worst in a year. Maybe it's hormones What do you guys think? Nick's been waking up at 2 in the morning. He's so frustrated. Last night he was in such bad shape he lashed out at me. He grabbed my hair and my ears and held on. He was so inconsolable I found myself calling to my daughter for help when Nick wouldn't let go of me. He didn't hurt me, but I cried. Evyn sat on the floor outside his door with me for an hour, lovingly waiting with me, while I worked to help him calm down.

Quality of Life for Adults with ASD is Abysmal ... We Have Our Work Cut Out For Us

2011-08-08T07:27:00.000-07:00

10% have some type of occupation
4% live independently
3.5% socialize outside the home
95% report no friendships
83% of adults with autism have fewer than two social contacts per week outside their homes.

The good thing about statistic's is they make it really clear, where you are and where you might not want to be. I looked at the list and first it was a punch to the gut. Then I realized, not so much. I'm taking this list to my next team/school meetings and asking what we are working on to work toward everyone of these. How are we improving his odd's. I already know we can change #3 right now and even #4 and we can push the steps that work on numbers 1,2,5.

Startled, I turned to see a man in my room "Who is That?"

2011-08-05T10:10:00.000-07:00

Startled, I turned to see a man in my room. "Who is That?"

For a split second I didn't know who it was. It was Nicky. He's growing so fast. It was really weird to look up to see a man and not my little boy.

"We're Here to Speak for Justice" A Must See Moving Forward

2011-08-02T13:52:00.000-07:00

Many of you were not able to open the link I previously posted. Thanks to the Lanterman Regional Center, here's a new link. This movie - however slow moving - changed how I looked at Nicky's future, by showing me how far we've come. No doubt our journey has been rough, but this documentary movie gave me perspective. I now vividly understand; not only do we have a long way to go to move things forward, we also have to fight to keep from moving backwards, especially in light of today's economic realities.

I wasn't around when these families were fighting for their children and all I can say is, I'm so glad they did. Please God don't let us go back there.

Please with DD'sWatch "We're Here to Speak for Justice" http://www.lanterman.org/uploads/videos/video_werehere.html.

“Abused and Used” - Report details major issues in NY institutions

2011-08-01T13:57:00.000-07:00

Report details major issues in NY institutions

Andy Jones | June 8, 2011

New York

In the latest *article in its “Abused and Used” series, the New York Times documents a range of abuses in the state’s nine institutions for people with developmental disabilities.

The article details a system where employees at the institutions, as well as state inspectors, are routinely hired despite having criminal backgrounds. In many cases, these employees are rehired, despite having abused patients in other institutions, or in the institutions from which they were previously dismissed.

“Those who run them have tolerated physical and psychological abuse, knowingly hired unqualified workers, ignored complaints by whistle-blowers and failed to credibly investigate cases of abuse and neglect,” the article states.

As a result, the system has create a culture which discourages accountability, according to the article.

“When I first started working there, I was told, ‘Keep your eyes open and your mouth shut and you’ll do just fine here,’ ” said Mary Maioriello, a former employee at the Oswald D. Heck Developmental Center near Albany, in the article. “It was kind of like a code that you just didn’t turn anything in. A word that they used a lot was a ‘snitch.’ That’s what it felt like to me, like I was in some kind of gang or cult.”

The state’s nine institutions house about 1,300 people with disabilities. It costs, on average, two and a half times more to house people in these institutional settings than to house them in the state’s group homes, which house more than 135,000 individuals.

Gov. Andrew Cuomo, who has called for further deinstitutionalization efforts, recently fired the head of the state Office for People with Developmental Disabilities. However, the center, a large recipient of federal funds is currently the subject of a federal audit.

In March, the New York Times published an extensive report detailing abuses in New York’s state-run group homes.

The Commission on Quality of Care and Advocacy for Persons With Disabilities is funded, in part, by the federally funded protection and advocacy system and is a member of the National Disability Rights Network.

*Some of the sites linked above may not use People First language, or may not be universally accessible to all users with disabilities. DRW promotes web accessibility and use of language that is respectful to people with disAbilities, at all times.

We have included this link, rather than omitting it, because we felt it may be of significant interest to some, rather than to none. There may be ways to connect to web managers for sites that aren’t accessible, both to access needed information and promote web accessibility.

For more information on People First Language, see the websites below.

www.disabilityisnatural.com/images/PDF/pfl09.pdf

www.disabilityisnatural.com/explore/language-communication

Humans are Human even at Church

2011-07-31T18:37:00.000-07:00

I expected to feel safe (or at least safe for us) at a church. I expected people to be at their best and I assumed their best would look how I thought it should look. It didn't. At 9 he was too big for little kids church and we were not so welcome anymore. At 11 he started to be too big for kids church. People became less tolerate of his behaviors and they wanted him to move on to tween church, where they thought it would be a better fit. I don’t’ think they were considering what was best for Nick. They complained if he was late, they complained that he didn't’ seem to be involved in the lesson and enjoying “share” time and he didn't embrace “quite or meditation” time up to their expectation. I was told “ Nick just doesn’t seem to fit here”. Gee, really? A kid with ASD isn’t sharing up to par or embracing prayer and meditation and your interpretation is "he doesn't fit". Ouch! I don’t want my kiddo where he is not wanted.

I tried tween church. I’d been introduced to the man who facilitated the program and he has a child with ADS. Maybe it is a better place, maybe the problem is protective mom holding on too long. I put Nicky in. He was quiet, he just sat and observed, he didn’t participate. He didn’t tantrum or disrupt the group with noise or run for the door. He just watched, I thought it was a good day.

As I walked to the car I was stopped by the program leader. He frankly said “I don’t think this is the program for Nicky. I don't think he fits in”. I was blow away. In short I asked why, and how could he say that after just one day? His answers were vague. I’m thinking been there, done that, but why here?.

Seems humans are humans even at church, and rejection feels like rejection no matter where it happens.

Abandonment; Through the Eyes of Autism

2011-07-28T18:37:00.000-07:00

Evyn went to a friends and stayed the night. When it was time for Nicky to go to bed and his sister wasn't home he was upset, asking "Sister tomorrow?". It wasnt' noon the next day before Nicky was incredibly agitated and on the brink of a meltdown. He relentlessly asked me (and said to himself) “Sister coming home?” He missed her; but it was more than that, it was as if he didn't know if she would be back. I was sad to see him so uncertain and needing constant assurance, but I understood given the world from his perspective.

Nicky remembers every therapist he’s bonded with since he was two and they’re his friends. He’s seen most of his “friends” leave one day, never to be seen again. His father who always used to come and go, one day never came back. He probably really doesn’t know for sure, who stays who goes or even when. No wonder he’s so nervous.

The blessing in the 24 hours of sad Nicky is I now know how much I have to help Nicky prepare for when Evyn leaves for school next month. I’ve been working on getting myself emotionally prepared and now I'm going to make a plan to help Nicky get prepared. BEFORE she leaves.

Bye Bye Harry!

2011-07-25T15:07:00.000-07:00

The Harry Potter experience was the "something" that created a thread of shared experience for Evyn and I. An experience woven throughout most of her lifetime, that will forever be synonymous with her childhood and growing up.

I'm sure I'm not the only parent of an 18 year old who is struck by the irony of childhood being over for Harry, just as it is for our kids. Evyn grew up with Harry Potter and I feel like the posters and advertisements that read "The End", "It's Over" are talking to us. Another ending....Harry Potter has been a part of our lives since Evyn was 5! Harry Potter gave way to a ritual of books and movies that bonded Evyn and I. We snuggled countless nights reading the books and shared the anticipation of new releases. Harry Potter was something that only Evyn and I shared.

As Evyn and I watched the last movie I looked at her, and just like Harry she has grown up; strong and capable. Thankfully, I am more proud of who she has become and who she will be, than I am sad about losing my little girl.

Puberty and Boundaries...or The Lack Thereof!

2011-07-23T08:47:00.000-07:00

It’s can’t just be Nicky…can it?

Puberty is in full swing here and Nicky's private parts are doing those things young boys private part’s do; there are no boundaries just things that happen!

Nicky doesn’t like most stuff other boys his age like, except girls, he gets excited when a cute girl walks by. He get's this little fiendish smile and you can see the wheels turning, he's thinking about how to get closer so he can touch them. He love's to press on tummies and tushes. All day we’re saying, “No touching”, “My Body”, “Distance”, “No touching other people bodies” hoping for a successful preemptive strike!

It doesn't stop there. I know Nicky loves me but I wasn’t expecting to be the object of his “inappropriate” affection. He looks at me like a cup cake, sneaks up and gropes me! I find myself looking around thinking “I hope nobody saw that” way too often lately.

The End of the Beginning......

2011-07-21T15:06:00.000-07:00

I guess God really wanted me to be clear the chapter of Evyn the child, is over. In a two month period she turned 18, graduated from high school, got accepted into college and will move into a dorm; BAM!

The Journey Continues

2011-07-06T21:59:00.000-07:00

Nicky has always had a gift for spotting wonderful people
with big hearts and he took to his cousin Clyde right away.

We never know where life will take us, or when. Today God took back a good one, Clyde Woods.

I've known him for 6 years and it was immediately clear to me Clyde was a special man. An educator dedicated to making this world a better place. By example he recently returned from a trip to Haiti where he sought to bring attention to their ongoing challenges. In his last days, he was still thinking about the Haitian people, their polluted water and wondering how their lives will be improved.

Maybe in his new position as an Angel he'll get to chance to improve the water.

You will be missed. Rest is peace Clyde.

_________________________________________________________________

A little about Clyde: Professor Woods earned his PhD in Urban and Regional Planning from UCLA and has taught at Pennsylvania State University and the University of Maryland His research focuses on the regional organization of poverty, power, race, and culture in the United States. His first book, Development Arrested examined these relationships in the rural Mississippi Delta and his upcoming study will address the role these social forces played in the construction of Black Los Angeles, from 1781 to the present. Another research area focuses on the philosophical and analytic contributions of Blues, Jazz, and Hip Hop. As part of this work, he recently co-edited Black Geographies and the Politics of Place with Katherine McKittrick. Finally, Professor Woods has initiated two long-term-research projects based in the Department. The first examines and supports the rebuilding efforts in New Orleans. The second project is designed to create a network of community members and scholars who are both studying Black Los Angeles and developing innovative policy solutions.

My Girl Turns 18, The Best Surprise Party EVER!!!

2011-06-24T19:52:00.000-07:00

WE SURPRISED YOU….&

YOU SAID IT COULDN'T BE DONE!! Gotcha!!!!!!!!!!

One of the best days EVER is how I rank Evyn's surprise birthday and graduation party!. What I wanted to do more than anything was to give Evyn a day that was ALL about Evyn. A day where she was the center of the universe, a day she would remember for a lifetime. A day where she didn’t have to share a second of the sunshine with her brother, a day where life was just about happiness, her happiness. A day were everyone showed up JUST for her, a day to share with all the amazing people who make up the village that's brought us safely and successfully to this happy day. And maybe most of all a day where autism was not in the lead role….but just hanging way back like the understudy. We did it! Thanks to everyone :)

Anxiety Disorder! Me not Nicky

2011-06-19T10:44:00.000-07:00

Stress always goes somewhere...we just never know where and I still can't believe I've become a teeth grinding jaw clincher. It began when I started having nightmares that we were the targets of a home evasion robbery. Every night I would have a dream where burglars were trying to break in or they did break in. In every dream I was fighting to get the kids, fighting to keep us safe. Sometime they cut they phone lines, and we were just sitting ducks waiting for their next move. Sometimes they just slammed in through windows or doors. Either way my sleep stopped being a peaceful place and at some point in I started clinching my jaw and grinding my teeth. I'd wake up in the morning feel anxious and my jaw felt strained. At first I thought it was my imagination, just part of my dream, until I visited the dentist. Wake up call came 1st by way of confirmation that I had been sawing down my teeth and 2nd with the news, the needed mouth guard would cost $500! I opted to first try the $29.00 drug store, mold it yourself guard and it's been great!

PS: He's the interpretation I found for my dream which started when my husband left the country and I became a single parent. Pretty right on.
Robbery
To dream that you have been robbed, indicates that you are experiencing an identity crisis or are suffering from some sort of loss in your life. Alternatively, the dream means that someone has stolen your success or has taken credit for something you did. Perhaps you feel that you have been treated unfairly.

Getting It - Changes, Transitions and our Kids

2011-06-18T10:56:00.000-07:00

Nicky has been on the verge of a breakdown almost every minute of every hour for two weeks. His frustration tolerance is really low. It's like if meltdown happens at level ten...he's been floating between level 5 and 8 all the time, so just one little thing and BAMB he's gone! Not a fun time for any of us. But there's good news, I know that this too shall pass!!!! Time and experience is our friend because I've been here before. I can go down my check list...

Getting Sick...Probably not
Medication Reaction... Probably not
Change in Schedule...Yep
Anxiety... Yep

The school year is ending. He know's it's ending. His routine will stop, he won't see his teachers and when
he comes back to school in the fall. He doesn't know what teachers or kids will still be there. He's anxious. It happened last year and it's even stronger this year because he's more aware of his routine and the MANY ways it can change.

He know's he will go to summer school, but he doesn't know where and he doesn't know the kids.

The therapist who is with him three days a week at school, takes the summer off.

Last summer I promised we would go to the San Diego Zoo in July. He's been asking about it everyday since December and he's literally been counting down the days. It's almost here and he's loaded with anxiety about making this long awaited trip. PS: This was a great way to teach him how to measure time and keep tracks of the months.

So, I know this too shall pass. I know what it is, I know what he's feeling and that's the next best thing to not having the problem at all!

"It's coming" vs "It's here". The end of a chapter......

2011-06-18T10:41:00.000-07:00

Countdown to my daugher's High School Graduation....

Morning will never be the same. Next week Evyn turn's 18 and she graduates from High School. Two MAJOR milestones in two days and I'm having a hard time really taking it all in.

Yesterday as I got her up early to be at school by 6 am for a senior trip, it hit me that in 14 days this will not be mine to do. Don't get me wrong I've haven't glamorized our mornings; getting Evyn up and out the door on time every morning has been a source of battle in our home since 1st grade and I threatened to give up time and time again! Never thinking about how I would feel the day it would end.

For 18 years my life has been waking up to take care of her, peeking in her room to make sure she's okay and seeing her as she started her day. Since she started pre-school about 3,510 hours of my life has evolved around waking her up; making sure she's dressed for school, has lunch, a clean face, breakfast and getting myself dressed and driving her to school.

In two weeks this chapter will be over and I feel sad.

If Anyone Needs a Laugh :)

2011-06-14T12:20:00.000-07:00

IT CAN BE HARD KEEPING A STRAIGHT FACE AS A COURT REPORTER

These are from a book called Disorder in the American Courts, and
are things people actually said in court, word for word, taken down and now published by
court reporters that had the torment of staying calm while these exchanges were actually
taking place.

ATTORNEY: What was the first thing your husband said to you that morning?
WITNESS: He said, 'Where am I, Cathy?'
ATTORNEY: And why did that upset you?
WITNESS: My name is Susan!
____________________________________________

ATTORNEY: What gear were you in at the moment of the impact?
WITNESS: Gucci sweats and Reeboks.
____________________________________________

ATTORNEY: Are you sexually active?
WITNESS: No, I just lie there.
____________________________________________

ATTORNEY: This myasthenia gravis, does it affect your memory at all?
WITNESS: Yes.
ATTORNEY: And in what ways does it affect your memory?
WITNESS: I forget..
ATTORNEY: You forget? Can you give us an example of something you
forgot?
___________________________________________

ATTORNEY: Do you know if your daughter has ever been involved in voodoo?
WITNESS: We both do.
ATTORNEY: Voodoo?
WITNESS: We do..
ATTORNEY: You do?
WITNESS: Yes, voodoo.
____________________________________________

ATTORNEY: Now doctor, isn't it true that when a person dies in his
sleep,
he doesn't know about it until the next morning?
WITNESS: Did you actually pass the bar exam?
____________________________________

ATTORNEY: The youngest son, the 20-year-old, how old is he?
WITNESS: He's 20, much like your IQ.
___________________________________________

ATTORNEY: Were you present when your picture was taken?
WITNESS: Are you shitting me?
_________________________________________

ATTORNEY: So the date of conception (of the baby) was August 8th?
WITNESS: Yes.
ATTORNEY: And what were you doing at that time?
WITNESS: Getting laid
____________________________________________

ATTORNEY: She had three children, right?
WITNESS: Yes.
ATTORNEY: How many were boys?
WITNESS: None.
ATTORNEY: Were there any girls?
WITNESS: Your Honor, I think I need a different attorney.
   Can I get a new attorney?
____________________________________________

ATTORNEY: How was your first marriage terminated?
WITNESS: By death..
ATTORNEY: And by whose death was it terminated?
WITNESS: Take a guess.
____________________________________________

ATTORNEY: Can you describe the individual?
WITNESS: He was about medium height and had a beard
ATTORNEY: Was this a male or a female?
WITNESS: Unless the Circus was in town I'm going with male.
_____________________________________

ATTORNEY: Is your appearance here this morning pursuant to a
deposition notice which I sent to your attorney?
WITNESS: No, this is how I dress when I go to work.
______________________________________

ATTORNEY: Doctor, how many of your autopsies have you performed
   on dead people?
WITNESS: All of them.. The live ones put up too much of a fight.
_________________________________________

ATTORNEY: ALL your responses MUST be oral , OK? What school
   did you go to?
WITNESS: Oral...
_________________________________________

ATTORNEY: Do you recall the time that you examined the body?
WITNESS: The autopsy started around 8:30 PM
ATTORNEY: And Mr. Denton was dead at the time?
WITNESS: If not, he was by the time I finished.
____________________________________________

ATTORNEY: Are you qualified to give a urine sample?
WITNESS: Are you qualified to ask that question?
______________________________________

And last:

ATTORNEY: Doctor, before you performed the autopsy, did you
   check for a pulse?
WITNESS: No.
ATTORNEY: Did you check for blood pressure?
WITNESS: No.
ATTORNEY: Did you check for breathing?
WITNESS: No..
ATTORNEY: So, then it is possible that the patient
   was alive when you began the autopsy?
WITNESS: No.
ATTORNEY: How can you be so sure, Doctor?
WITNESS: Because his brain was sitting on my desk in a jar.
ATTORNEY: I see, but could the patient have still been alive,
nevertheless?
WITNESS: Yes, it is possible that he could have been alive and
practicing law.

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

2011-06-10T13:54:00.000-07:00

If you don’t read this piece, watch this documentary
"We're Here to Speak for Justice" http://www.lanterman.org/uploads/videos/video_werehere.html. Here’s the link…please give it another go! (new link 8/1/2011)

Yesterday I was given the opportunity to sit on a panel and give a parent’s perspective to service providers building quality behavior programs for the growing ASD population while working within the constraints imposed as a result of the budget crisis. I was honored to be included in the conversation and heard by an exceptional group of dedicated professionals. My comments reflected my belief that ASD will never align with a one size fit's all service model and I fear for those whose needs will not be met if we implement a model that is not required to consider each individuals "individual" situation albeit severity of ASD, family conditions, culture, history, medical or co-morbid conditions, resources and so on.

Today I thought about when teachers and schools were first asked to make cuts. They cut back in good faith; unable to imaging each sacrifice wouldn't be enough. First it was PE, then the arts, consumables, field trips; followed by larger classrooms, less staff and cuts in salaries. One cut after another until our system arrived at a point of crisis. I don't believe dedicated professionals foresaw our educational system would be where it is now. Many I have spoken to, look back and acknowledge they would have made different decisions to protect public education and the children had they known we would end up here, I hope we learn from what has happened in education as we make plans for the future of our families.

In California the Lanterman Act governs state laws to protect this population and, just like public education, it’s been under assault for years pounded by increased case loads, rate freezes and reductions. The demands being placed on our Regional Centers and service providers are dismantling the entitlement system and this frightens me.

I didn’t have any idea what it was like for the mothers of children with developmental disabilities until I watched the documentary “We're Here to Speak for Justice" about the creation of an entitlement system to protect our children. Thank God, I didn't have a child with a developmental disability before the 70’s and the Lanterman Act. Seeing this video changed me. Knowing the past changed me and how I think about what could happen to my son if I forget the past and don’t fight like hell for the rights he has today. I did some research and found it’s available online. Below is a link to both the online video and a companion booklet. It’s important viewing for all of us.

View the Film

A streaming video version of the film is available online.

http://www.lanterman.org/index.php/were_here_to_speak_for_justice_founding_californias_regional_centers/

Download the Companion Booklet

The companion booklet to the film "We're Here to Speak for Justice" is also available online as a downloadable PDF. Download the booklet (440 KB) For all of us who were not around to see what life was like for families in the 70's or for those of us who just don't remember please watch the documentary "We Stand For Justice" and consider the past as you move forward.

and...thank you to all the parents who have gone before me. Your fight has made it better for my family.

Researchers Look for Genetic Clues in Autism - Streaming Now....here's the link

2011-06-10T11:30:00.000-07:00

talk of the nation

Researchers Look for Genetic Clues in Autism

February 23, 2007 Researchers in the journal Nature Genetics reports on the initial stages of a project that is hunting for genetic factors in autism The analysis found a ...http://www.npr.org/templates/story/story.php?storyId=7574433

News Alert: Please tune in today to NPR’s Science Friday,

2011-06-10T09:57:00.000-07:00

Please tune in today to NPR’s Science Friday, which will include MIND superstar Dr. Irva Hertz-Picciotto discussing this important topic with Ira Flatow between 11:20-11:53 a.m.

Gene Mutations Offer Clues On The Autistic Brain A trio of studies in the journalNeuron describe genetic mutations that may influence the development of the autistic brain, and how neurons connect to each other. Ira Flatow and guests discuss the latest science on autism, and some of the most successful treatment options.

This Information Sent To Autism Day By Day. Thanks Lou!

Louis A. Vismara MD
Policy Consultant to Senator Darrell Steinberg
Office of the President Pro Tempore
The State Capitol, Rm. 415
Sacramento, CA 95814

louis.vismara@sen.ca.gov

News Alert: Autism linked to hundreds of genetic mutations

2011-06-09T15:22:00.000-07:00

Autism linked to hundreds of genetic mutations

Three new studies conclude that autism disorders are genetically very complex, not caused by one or two gene defects. The potential changes in DNA may produce what are essentially different forms of autism.

By Shari Roan, Los Angeles Times

Link: http://www.latimes.com/health/la-he-autism-20110609,0,2892508.story

June 9, 2011

Autism is not caused by one or two gene defects but probably by hundreds of different mutations, many of which arise spontaneously, according to research that examined the genetic underpinnings of the disorder in more than 1,000 families.

The findings, reported in three studies published Wednesday in the journal Neuron, cast autism disorders as genetically very complex, involving many potential changes in DNA that may produce, essentially, different forms of autism.

The affected genes, however, appear to be part of a large network involved in controlling the development of synapses, the critical junctions between nerve cells that allow them to communicate, according to one of the three studies.

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Although the work will have no immediate value to patients or their families, the insights provide a wealth of targets to pursue in developing treatments for the disorder, scientists said. Understanding the genetic causes of autism spectrum disorders may promote more accurate diagnoses, and research on synapse formation and function could yield treatments that address the flow of signals between nerve cells.

"For the first time we're getting a sense of how many areas of the genome are likely to contribute to autism," said Dr. Matthew W. State, associate professor of psychiatry and ofgenetics at Yale University and the lead investigator of one of the reports. "We know there are multiple, different ways to get autism."

Autism spectrum disorders are a group of conditions, ranging from severe to mild, that are characterized by problems with social interactions. Those with autism may exhibit repetitive behaviors and narrow, obsessive interests; some may have low IQs or problems with language development. About 1 in 110 U.S. children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention.

An estimated 25% of autism spectrum disorder cases are linked to inherited gene mutations that are passed from parent to child. Some of these high-risk genes have already been identified. But researchers have been puzzled by the cause of the disorder in families with no history of autism.

To tackle the question, two independent groups of researchers used DNA data collected by the Simons Foundation Autism Research Initiative on more than 1,000 families with at least two children in which a single child had autism spectrum disorder but the parents and siblings did not.

The teams, led respectively by State at Yale and by Michael Wigler, a genetics researcher at Cold Spring Harbor Laboratory in Cold Spring Harbor, N.Y., then compared the DNA of those with autism to that of their unaffected siblings.

The scientists found that autism was associated with rare duplications and deletions of stretches of DNA that appear to have arisen spontaneously; in the study led by Wigler, these events occurred in 8% of children with autism spectrum disorder compared with 2% of unaffected siblings.

The scientists believe, though have not yet proved, that many of these changes — and more specifically, removal or duplication of certain genes that lie within the affected DNA regions — are responsible for the children's disorders.

"In many diseases, you see an inheritance pattern. You don't see that with autism," said Michael Ronemus, a coauthor of the Cold Spring Harbor team and a research investigator at that institution.

The two teams have identified a few dozen of these spontaneous mutations, but there could be as many as 300, Ronemus said. As studies continue, they may define a number of distinct sub-types of autism, he added.

The spontaneous mutations appear to occur in the parents' germ lines, which give rise to sperm and eggs, and either father or mother can be the source.

One compelling question is what is causing the mutations, said Irva Hertz-Picciotto, an autism researcher and professor of public health science at UC Davis who was not involved in the studies.

Reported rates of autism have risen in recent decades, and though some scientists believe that much of the change is due to greater awareness of the condition and thus increased diagnosis, some have questioned whether certain environmental exposures may be playing a role.

"The obvious conclusion one has to reach is that something environmental may well be the cause of these [spontaneous] changes in DNA," Hertz-Picciotto said.

The studies also yielded some intriguing clues about gender differences in autism spectrum disorders. Boys are four times more likely to develop autism than girls. The analysis led by Wigler found that girls with autism had more of the rare duplications and deletions than boys with autism and that the events in girls also involved more genes — implying, perhaps, that girls require a higher number of genetic changes to develop the disorder.

"Mutations occur at the same rate in males and females, but in females the mutations will not have such a devastating impact," Ronemus said. "We don't understand the basis for that."

Both research teams pinpointed a region of chromosome No. 7 that appears key to the development of social personality. Researchers had known that deletion of that region, called 7q11.23, causes Williams-Beuren syndrome, a rare neurological disorder characterized by a highly social personality. The new studies showed that duplications in the same region are linked to autism spectrum disorder.

"What is it about that region? There has to be some biological factor that is playing a key role in defining social behavior," State said. "If we can understand the underlying biology of autism, we'll be able to do a far better job of treating it."

shari.roan@latimes.com

LAUSD Broadcast of the Teachers Hour

2011-06-07T21:16:00.000-07:00

LAUSD's amazing Autism Specialist Debbie Moss asked if I would join some 14 teachers, administrators and parents in an open discussion on the Teachers Hour (KLCA-TV) to talk about how we used collaboration and communication to improve Nicky's school experience.

It was a great group of people who are clearly dedicated to seeing LAUSD be the best it can be. I appreciated being given the opportunity to voice an opinion. We were just getting rolling...just getting to the meat of the matter, ready to dig in and poof... it was time to say good night. Oh, well maybe next time.

The program is now online for anyone who would like to view it. You can also view the other programs they have done, send in comments and participate in the conversation when it's live, complete with Spanish translation. I liked seeing some of the administrative faces typically invisible to us.

https://sites.google.com/site/teachershour/home.

Prompts and Circumstance Part II - Language Processing vs Questions & Social Greetings

2011-06-01T22:01:00.000-07:00

Nicky is 13 and his language processing is so bad he still confuses "How are you?" with "How old are you?". On the good side we have learned his strengths and we keep finding ways to use them to help Nicky expand and grow. Here's our latest team effort to help him with greeting and questions. We begin tomorrow. If you want to try it...please cut and paste away!

News Alert: 10 Impressive Special College Programs

2011-05-29T21:49:00.000-07:00

10 Impressive Special College Programs for Students With Autism

http://www.bestcollegesonline.com/blog/2011/05/25/10-impressive-special-college-programs-for-students-with-autism/

Many autistic teens out there have the brains to make higher education a breeze, but are lacking in some of the social, time management and organizational skills they’ll need to make the grades they deserve. Luckily, there is a wide range ofcolleges out there stepping up to offer support and help for students with autism spectrum conditions. Here are 10 of the growing number of colleges that can be a good choice for students with autism, as they can provide support groups, assistance with courses, special classes and all the information students need to get a degree.

Drexel University Autism Support Program: Drexel has one of the most comprehensive autism support programs out there for college students today, aiming to create a more diverse experience that includes those with not only cultural differences, but neurological ones as well. Through the DASP, students can find peer mentor training, support from advisors, as well classes and programs to help them better adapt to life in college. Additionally, students can work to become advocates for the condition on campus and eventually pay their help forward by supporting successors.
Rutgers Developmental Disabilities Center: Autistic students at Rutgers are offered several options that can improve their college experience. From getting a single dorm with no roomies to accommodations that can help in the classroom, the school is taking a serious look at ways they can attract and assist students with autism spectrum disorders. Students can check out the Douglass Developmental Disabilities Center for additional help from other students, psychologists and other professionals, or enroll in the Asperger’s Disorder College Program – which provides goal development, meetings with team members, orientations to campus life and helpful guidance for socializing and studying.
Mercyhurst College AIM Program: Students at Mercyhurst who have an autism disorder never need to feel alone on campus. The school offers a program designed to help students with autism called the Asperger’s Initiative at Mercyhurst, offering support in the academic and social aspects of attending college alike. Students enrolled in the program will get group and individual help with building communication skills, researching and writing papers, developing social skills and other aspects of college with which many students struggle. The program is in its third year and still going strong, making Mercyhurst a strong contender for students who have an autism spectrum disorder.
Midwestern State University: With so many students being diagnosed with autism these days, this school thought it was wise to help them meet their college goals by creating a support program. Through it, students with a range of autism disorders can find help from counselors and peers. They may live in a special house on campus along with two peer mentors, where they will gain the skills they need to learn to live independently and become a successful college student. Additionally, they will receive help from staff members with any problems they may face in adjusting to their new life. While the program is doing well, it still needs additionally financing to help it continue through 2012.
St. Joseph’s University Kinney Center for Autism Education and Support:While not as comprehensive as some of the other autism programs, students at St. Joseph’s will still find some great resources through the Kinney Center that make getting a higher education a little less daunting. The Center not only reaches out to the larger community to promote autism advocacy, but also helps students with learning more about the disorders and how to live on campus. Additionally, they organize events and courses that can be of great interest to those with autism and can help individuals get out and make new friends.
Boston University Supported Education Services: Free to anyone attending BU, this program offers individualized assistance with building academic skills and supporting students with autism disorders during their time in college. It can be a great way for them to get help in adapting to college life and finding the motivation to seek out social interactions. Additionally, BU is a great place to follow the latest research being done on autism today, and students in the life sciences may even be able to take part in making discoveries that could change how the medical field sees the spectrum.
University of Alabama College Transition and Support Program: Through this college program, students will get help improving their study skills and other academics while also learning about what will help them better interact with peers, teachers and others on campus. Founded in 2006, the program works with a few students each year, providing them with support from faculty, clinical psychologists and graduate students. The creators hope it will help students gain the skills they’ll need to not only succeed in college, but live as an independent adult and work in their chosen career field as well.
Autism Collaborative Center at Eastern Michigan University: This autism support program is one of the most comprehensive, but also one of the most expensive — sometimes running parents up to $8,500 per semester. Yet it provides support in every aspect of college life and will help students to steadily improve both academically and in socially throughout their time in school. Help from the ACC can range from nutrition therapy to academic support, and students will not only be able to interact with staff, but also a large number of autistic students from the college and the surrounding community.
University of Connecticut SEAD Program: The goal of this program is to help students and their families make the transition to college a smooth one, assisting the former in learning more about their disability and how to function as an independent adult. It is open to any student accepted to the university with an autism spectrum disorder and is available at varying levels of intensity. Participants reveive access to support from staff, weekly meetings and a range of materials that can make the college experience a whole lot less intimidating.
Marshall University Autism Training Center: Students who choose to attend Marshall will have access to its Autism Training Center. This organization offers a number of programs that can help college students learn to better manage their classroom assignments, make new friends and learn to live independently. They’ll also receive support from advisors on a daily or weekly basis, meet with professors and get help finding social activities on campus. Parents and students should be aware, however, that this support doesn’t come cheaply and can run as much as $3,200 a semester– a price that many are willing to pay to get the help and guidance they need.