Aptos: Aptos dad creates site to remember young daughter and raise money for rare cancer

Father designs Internet game in memory of daughter
By John Sammon
Posted: 04/26/2009

APTOS — Dave Wardle, in struggling to come to grips with the loss of a beloved daughter to a rare cancer-like disease, thought he could best serve her memory by designing a free online computer game that would spread awareness of hystocytosis and raise money to fight it.

“Sofia passed away six months ago,” Wardle said. “This is a rare disease, with 1,500 cases a year reported in the U.S. It’s like cancer, and it’s a blood-born illness produced in the bone marrow.”

“Wardle, 39, a computer programmer originally from England, moved to Aptos after meeting his wife Rebecca in 1992.

Doctors first diagnosed Sofia’s illness as leukemia. It would later appear to be in remission, but instead develop into histiocytosis.

“It started on the skin,” Wardle recalled. “Sofia developed these huge lesions, and they were very painful. She had them on her feet and couldn’t walk around.”

“Up until then, she had been a normal first-grader, a loving child who embraced life, a big sister and friend to her classmates at Rio del Mar Elementary School. A curly-headed child, she played the usual games, dress-up, stickers, music and dancing. She could hip-hop dance, too.

“But that ideal world shattered. “Just before Christmas of 2003, Sofia developed a fever, and her stomach was distended and firm to the touch,” Wardle said. “We took her to the doctor and were immediately sent to Dominican Hospital for blood tests. That was the beginning of our ordeal.”
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“Only 2 years old, she was one of the youngest patients at the Lucile Packard Children’s Hospital in Palo Alto. She would be ill for five years.

“The disease progressed slowly, and during the treatments there seemed to be successes. “It was a rollercoaster for us,” Wardle said. “At one point in 2008, the skin symptoms were getting better, or they seemed to be. But the disease was attacking other parts of her body.”

“The parents had insurance. However, the medical bills ran into the thousands of dollars as the child had to undergo an agonizing round of treatments, including chemotherapy and radiation. Though the pain at times was enough for her to cry out, her father said she bore it with courage and determination. She wanted to get dressed up for school, and go back and be with her classmates. Toward the end of her life, she was planning to become a singer, and had an iPod filled with her favorites: Hannah Montana, Hilary Duff and music from the theatre production, High School Musical.

“It’s amazing how much courage she had, and with good humor,” Wardle said of his daughter. “She taught us the meaning of bravery.”

Sofia was 7 at the time of her death. Her parents have a son Quinn, 5.

Wardle said the loss of his daughter was a blow that had him searching for a way to not only remember her, but to do something to try to find a cure for the disease so future children would not have to experience it. “I had to take an extended sabbatical from work,” he said.

Wardle called being Sofia’s father both a blessing and a tragedy, a struggle full of love and heartache. But, he noted, his daughter will always be an inspiration for him.

He created a Web site in Sofia’s memory called “Sofia Maze.”

An interactive challenge,
the game involves helping Sofia navigate a multi-stage picture maze, from her home in Aptos, to the Lucile Packard Children’s Hospital. The game combines beautiful images, with jokes, visual humor and whimsical distractions.

“Low-tech gaming can be just as compelling as the latest offering from Sony or Nintendo,” Wardle said.

The game created by Sofia and her dad went live Friday. The site will promote sponsorships and raise funding through donations to fight histiocytosis, the money going to the Histiocytosis Association of America and Jacob’s Heart Children’s Cancer Support Services.

People wishing to donate to fight histiocytosis can call Sofia’s father at (831) 332-1021 or visit sofiamaze.com Sofia’s Maze.

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Aptos: Three members of MS-13 street gang arrested in Aptos 4-23-09

Sting nets large meth bust in Aptos
Modified: Saturday, Apr 25th, 2009
BY: PETER SEGALL

Photos courtesy of the Santa Cruz Police Department

“More than three pounds of methamphetamine and a stolen handgun were seized and three suspects were arrested by members of the Santa Cruz Police Department in a joint gang/drug sting in Aptos on Wednesday.

German Escobar arrested in Aptos
German Escobar arrested in Aptos

Steve Clark of the Santa Cruz Police Department said this was a “significant amount” of the drug and that someone capable of obtaining this quantity was most likely “well-established in the network.”

The arrests were made after members of SCPD’s Street Crimes Unit worked in collaboration with the Fresno County Sheriff’s Office Narcotics Unit to purchase the drugs in Aptos from men identified as members of the Mara Salvatrucha “MS-13” street gang, according to a press release from SCPD.

The drugs were estimated at a wholesale value of $42,000. When sold on the street, police estimate that amount could double. Local law enforcement has taken notice of the increasing amount of gangs using drug trafficking as a means of support. A seizure of this size represents to officers that individuals are dealing in large quantities.

The three suspects, Pedro Escobar, 22, German Escobar, 23, and Jose Callejas-Alfaro, 29, all Santa Cruz residents, were each charged with possession of methamphetamine for sale, conspiracy to commit a crime, and gang enhancements, police said. German Escobar and Callejas-Alfaro were also charged with resisting arrest. German Escobar was additionally charged with possession of a stolen, loaded handgun, which he tried to discard while attempting to flee, police said. The handgun was reported stolen out of Wilkesboro, N.C.
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For the complete article see the 04-25-2009 issue.

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Aptos psychologist: Stop waste of time & conflict of interest by Santa Cruz County employees

Wow! There is a Whistle Blower hot line for Santa Cruz County. Let’s use it. Why does the CEO for Santa Cruz County have two assistants who bring her coffee who make more money than department heads?

How about a across the board PAY CUT for all managers that work for Santa Cruz County? The City of Santa Cruz has stepped up to the plate and has cut all salaries for managers by 10 percent. Lead the leaders lead in tough times.

Where do you see waste of time by government employees? Report it!!

go to http://www.co.santa-cruz.ca.us/whistleblower.htm Whistle Blowers for Santa Cruz County

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Aptos psychologist: Conservatorships protect developmentally disabled persons. Your regional center can test & provide report to Superior Courts.

With a few modifications, this is from the Santa Clara web site.

“Who decides if an adult is developmentally disabled (DD)?

“The Regional Center in your community (San Andreas Regional Center covers Santa Clara County, Santa Cruz County, San Benito and Monterey County) will test the proposed conservatee to see if s/he is developmentally disabled.

“Generally, a person qualifies as developmentally disabled if s/he has an IQ less than 70 or is diagnosed with autism. There are five eligible conditions to qualify under at any age for Regional Center services. The dsability must have been present before the person became age eighteen.

“Other conditions can qualify too. If the Regional Center accepted the person as a consumer shortly after birth, then s/he automatically qualifies.

But, if the person has never been tested or accepted as a regional center consumer, s/he must be tested.

“If the Regional Center feels the person does not qualify, and you disagree, you can appeal to the Area Board in your region. In Santa Clara County, the area board supervising the San Andreas Regional Center is Area Board VII.

“What kinds of decisions does a limited conservator make?

At the hearing, the judge will say exactly what rights the conservator has.

Because developmentally disabled people can usually do many things on their own, the judge will only give the limited conservator power to do things the conservatee cannot do without help.

The conservator may:

* Decide where the DD adult will live (but, NOT in a locked facility).
* Look at the DD’s adult confidential records and papers.
* Sign a contract for the DD adult.
* Give or withhold consent for most medical treatment (NOT sterilization and certain other procedures).
* Make decisions about the DD adult’s education and vocational training.
* Place the DD adult at a state hospital for the developmentally disabled (a locked facility, like Agnews Developmental Center).
* Give or withhold consent to the DD adult’s marriage.
* Control the DD adult’s social and sexual contacts and relationships.
* Manage the DD adult’s financial affairs.

“Any adult developmentally disabled person for whom guardianship or
conservatorship is sought pursuant to this article shall be informed
by a member or designee of the regional center and by the court of
the person’s right to counsel; and if the person does not have an
attorney for the proceedings the court shall immediately appoint the
public defender or other attorney to represent the person. The
person shall pay the cost for such legal service if able.

“If an affidavit or certificate has been filed, as provided in
Section 416.7, evidencing the inability of the alleged
developmentally disabled person to be present at the hearing, the
psychologist …. assisting in preparing the report and
who is required to visit each person as provided in Section 416.8
shall communicate such information to the person during the visit,
consult the person to determine the person’s opinion concerning the
appointment, and be prepared to testify as to the person’s opinion,
if any.

416.17. It is the intent of this article that the director when
acting as guardian or conservator of the person of a developmentally
disabled person through the regional center as provided in Section
416.19 of this article, shall maintain close contact with the
developmentally disabled person no matter where such person is living
in this state; shall act as a wise parent would act in caring for
his developmentally disabled child; and shall permit and encourage
maximum self-reliance on the part of the developmentally disabled
person under his protection.

The above is from the web site for Superior Court of Santa Clara County

To contact San Andreas Regional Center for information, go www.sarc.orgSan Andreas Regional Center

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Aptos psychologist: new 1 oz. bottles for breastfeeding make it easier to collect and store. Babies can be fed directly from bottle.

Article Date: 23 Apr 2009

“Thermo Fisher Scientific Inc. has expanded its line of Snappies breastfeeding solutions with the new small volume 1oz container. Responding to the demand for more feeding choices, this sterile, leak-proof, airtight container can be used for the collection, storage and feeding of expressed breast milk. Designed to work with most popular breast pumps, 1oz Snappies container makes it even easier to collect and store smaller volumes of colostrum safely and conveniently. Babies can be fed directly from the container, eliminating the need for bags and bottles, as well as making breastfeeding easier both in the first few days after birth, and throughout the early, critical months at home.

“Snappies containers come in both 1oz and 2.3oz sizes. Snappies have been manufactured with a sterile interior, and are designed to work with standard ring-sized breast pumps typically used in hospital neo-natal care units. The containers allow mothers to pump directly into the bottles and a hinged flip-top lid conveniently locks back out of the way while in use, enabling the container to be opened and closed with one hand. In addition, the unique triple-seal design offers a complete airtight and leak-proof solution, ensuring maximum shelf life for breast milk when stored in the refrigerator or freezer. The hinged lid eliminates concerns about dropping or misplacing the lid, and the lid closes with an exclusive audible “snap” to indicate airtight closure. Furthermore, each Snappies Container features a built-in label section to quickly and easily record the mother’s name, date and collection time, and eliminate any potential identification problems.

Go to http://www.snappiescontainers.comSnappies

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Aptos psychologist: sensory integration helps children with autistic spectrum disorders (ASD)

Article Date: 15 Apr 2009

“Occupational therapy helps people develop the life skills needed for living independent and satisfying lives, and it’s also helpful for children diagnosed with ASD,” said Dr. Skip Freedman, Executive Medical Director at AllMed Healthcare Management, a leading independent review organization (IRO). “Occupational therapists who treat children with ASD seek to help them develop suitable responses to stimuli in their environment.”

“Four clusters of behavior characterize autism: disturbances in social interaction, deficits in communication, behavioral abnormalities, and disturbances of sensory and perceptual processing.

Of these, the inability to communicate is key. Children with ASD learn to talk later, don’t learn to talk at all or sometimes lose the ability to talk. Others may learn to talk, but find using language effectively in social interactions difficult.

“Children with ASD can be both under- and over-responsive to sensory stimuli. Disturbances in the children’s perception of auditory stimulation are common.

“Based on analysis of the interactions of an ASD child’s skills, challenges and occupations, occupational therapists can intervene to help the child select alternative behaviors and tailor the intervention for the child’s specific needs and personality. This increases the child’s gaining new skills.

Sensory-based Integration

“Traditionally, occupational therapists focused on the child’s fine and gross motor skills, motor planning, and acquiring self-help skills. For example, they would work with ASD children to develop skills for buttoning their shirts, tying their shoes or work on their handwriting.

” Now, occupational therapists who specialize in ASD work with children on integrating the information coming in through their senses. Sensory integration and sensory-based interventions help children improve their self-regulation and develop acceptable behavioral responses. This integration effort improves the child’s sensory information processing and helps the child sort out acceptable from unacceptable behaviors. Additionally, the occupational therapist also may work with the child on his social and play skills.

Other Interventions

“Occupational therapists find relationship-based intervention treatments help a child with ASD grow both socially and emotionally. Often they use adult imitation involving many positive responses, prompts and cues to facilitate interaction between the children and their peers. This helps to show the positive effects of social engagement. Also, they engage the children in structured-play activities that include cueing, promoting and positive reinforcement to improve social interactions and taking turns.

Occupational therapists find that modeling and practice can have positive effects on activities such as turn-taking, joint attention, eye contact, nonverbal communication and language. Often they use social stories during therapy sessions to involve ASD children actively and to improve their targeted behaviors.

The philosophy and goals of occupational therapists align well with intervention for children with ASD, making them an integral part of the treatment team.

“Pediatricians can help parents identify early intervention programs available through a state’s department of social services or department of health,” said Freedman. “Often, parent’s health-insurance plan can fund occupational therapy.”

To cover occupational therapy for ASD, most health insurers may request documentation that includes integration and praxis tests (SIPT) results, short- and long-term treatment goals and require a therapist to have sensory integration credentials.

Source: AllMed Healthcare Management

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Aptos psychologist: Do parents BUY a diagnosis of autism? Some do.

Would anyone buy a diagnosis of CANCER? I don’t think so. Will parents BUY a diagnosis of AUTISM? Yes – some parents will try. And some families are quite successful.

Why “buy” a diagnosis of autism? Because there are lots of expensive “goodies” that attach with a diagnosis of autism. Expensive school services such as Occupatonal Therapy (OT) and Speech therapy and Social Skills therapy.

In contrast to Mental Retardation — not a diagnosis that parents seek — more and more parents do try to buy a diagnosis of autism.

Is there a real explosion of autism? Appears to be. Are the numbers way up in part because of the push by many parents to BUY a diagnosis. Yes, I think so.

To date, I have seen no research that addresses this issue: many parents WANT a diagnosis of autism and DESIRE affects t how they retrospectively describe their child’s behavior.

written by Cameron Jackson, Ph.D., J.D. Licensed Psychologist PSY 14762
831 688-6002

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Aptos psychologist: at 24 months screen for autism with following six questions.

Screen 24 month old children for autism with the following questions. Does your child take an interest in other children? Use index finger to point and indicate interest in something? Bring objects over to show parent? Imitate interest in something? Respond to name when called? Follow a point across the room? These questions are the most critical items from the M-CHAT which consists of 23 questions.

If you would like a full copy of the M-CHAT, contact Dr. Cameron Jackson at cameronjacks@gmail.com

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Aptos psychologist: research shows melatonin can assist children with autism to sleep better. Check with your doctor first.

Melatonin for Sleep Issues Related to Autism

By Lisa Jo Rudy, About.com

Updated: April 16, 2009

“Melatonin is a hormone. It is secreted by the pineal gland, and helps regulate sleep rhythms. Natural or synthetic melatonin is often prescribed for people with sleep disturbances, no matter what their cause.

Research shows that people with autism often suffer from sleep disturbances including insomnia and night waking. For parents with children on the autism spectrum (or for adults with autism spectrum disorders), melatonin could be just the ticket.

While melatonin does not generally have side effects, it is important to consult your doctor regarding appropriate dosages. This is particularly important if you are treating a child. Though you can purchase melatonin over the counter, dosages described on the bottle are unlikely to be appropriate for a little one.

Sources:

Andersen IM, Kaczmarska J, McGrew SG, Malow BA. Melatonin for Insomnia in Children With Autism Spectrum Disorders. J Child Neurol. 2008 Jan 8 [Epub ahead of print].

Dodge NN, Wilson. Melatonin for treatment of sleep disorders in children with developmental disabilities. GAJ Child Neurol. 2001 Aug;16(8):581-4.

Garstang J, Wallis M. Randomized controlled trial of melatonin for children with autistic spectrum disorders and sleep problems.Child Care Health Dev. 2006 Sep;32(5):585-9.

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north of Aptos 10 minutes: Chrysalis Program for young children with autistic spectrum disorders

Chrysalis Program for young children with autistic spectrum disorders

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The Crysalis Program which assists children with autistic spectrum disorders was started years ago and achieved a fine reputation in the community of Santa Cruz. It was an innovative and eclectic program. The woman who started the program, Fran Bussard, retired a few years ago.

Currently, the Morgan Autism Center is operating the Crysalis program in collaboration with the Santa Cruz Office of Education. This is the first year of operation through the oversight of the Morgan Center.

The Morgan Foundation in partnership with Santa Cruz County Office of Education provides one-to-one intensive services to toddlers and preschoolers with ASD. Where the Crysalis program is located:

Struck Preschool
984 Bostwick Lane
Santa Cruz, CA 95062
(831) 475-0290

Before the Morgan Center took over the Crysalis program for a while was run by the Listen Foundation. This is what I could find about that program from looking at local records:

“Two Santa Cruz County Office of Education classrooms, operated in collaboration with the Listen Foundation, integrate several methods and strategies such as TEACCH floor time, applied behavioral analysis, and sensory integration to teach social, communication, academic, and functional skills to address the needs of students diagnosed with Autism Spectrum Disorder (ASD) The Listen Foundation is a private non-profit agency serving individuals with Autistic Spectrum Disroders (ASD) and other developmental disabilities since 1982. For informaiton about the Listen Foundation go to: www.listenfoundation.netListen Foundation.

The Listen Foundation Office is located at:

303 Potrero #29-103
Santa Cruz, CA 95060
(831)426-7234

“The Chrysalis Program began in September of 1996 as a result of research indicating that intensive early intervention is a critical factor in the education and treatment of young children with autistic spectrum disorders (ASD). It is a highly structured program that promotes the emotional, social, behavioral, and cognitive development of each child. There is a strong emphasis on choice and communication.”

For more information about autism on the PAGE at top is a video of classic autistic symptoms in a young boy. O number of blogs concerning autism are also listed on the PAGE for autism.

Cameron Jackson, Ph.D., licensed psychologist 831 688-6002

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