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Empowering Through Information and the Fostering of Connections
Love. Acceptance. Intervention. Civil Rights. April 30, 2019

In This Issue

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A drug for autism? Potential treatment for Pitt-Hopkins syndrome offers clues

New study suggests parents should screen children for autism at 14 months

New scale measures anxiety in children with autism

Is There Anything I Can Do To Really Help My Anxious Child?

Study identifies predictors of early death among autistic people

Family and Others Looking for Help!!!

RDI and MORE at Therapeutic Approach to Growth

Best Buddies Friendship Walk

Cara Lucier & Associates

Summer Programs Club Xcite

Mastermind Autism and Aging, May 21st in Carlsbad

A Parent's Guide to Autism

Tennis clinics for children 6-12 for children on autism spectrum

Beacons Spring Marketplace

Summer Programs at Beacons

Book: Autistic and Awesome

ENGAGE & CONNECT at Kid Ventures

Konnections Camp

Preparing for High School and Beyond

Mainly Mozart's Mozart & the Mind


 

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  • A drug for autism? Potential treatment for Pitt-Hopkins syndrome offers clues
  • In 2019, geeks are cool, and the idea that they might be on the autism spectrum is celebrated. Nowhere is this truer than in Silicon Valley, one of the few places in America where social quirkiness and laser focus attention to detail are more often rewarded than criticized. Often lauded as an example of a success story in autism circles, renowned scientist Temple Grandin, once told a California newspaper, "Half of Silicon Valley's got mild autism, they just avoid the labels."

    I'm not one for diagnosing entire subcultures from newspaper articles, but the recent change in discourse around autism is good because it will hopefully push society to treat people with autism with more compassion. But this might also obscure a darker truth that the challenges and struggles for affected individuals and their families are at times overwhelming.

    Current approaches to help children with autism are of limited impact, but scientists are beginning to imagine that treatments will soon be based on an understanding of specific causes. Read on...

  • New study suggests parents should screen children for autism at 14 months
  • A new study suggests that children can be reliably diagnosed with autism at an age earlier than what is currently recommended.

    When screening for autism spectrum disorder, a new study suggests that children can be reliably diagnosed with autism at an age earlier than what is currently recommended.

    Current recommendations are for children to be screened specifically for autism spectrum disorder during regular doctor visits at 18 and 24 months old.

    Yet new data suggest that autism detection and diagnosis can start as young as 14 months old with high accuracy, which could lead to children with autism having the option to start therapies early, according to the study published in the medical journal JAMA Pediatrics on Monday. Read on...

  • New scale measures anxiety in children with autism

  • A new parent questionnaire is the first test designed to gauge anxiety in children with autism1.

    About 40 percent of autistic children have anxiety, compared with roughly 25 percent of typical children2. But anxiety may manifest in unusual ways in autistic children, such as a fear of flushing toilets or of exposed pipes, making it difficult to spot. Some autism traits, such as social problems and repetitive behaviors, can also mask anxiety.

    Researchers generally measure anxiety using tests such as the Spence Children's Anxiety Scale. But these tools rely heavily on a child's ability to verbally express worries, and they rarely work as well in autistic children as they do in typical children. Read on...

  • Is There Anything I Can Do To Really Help My Anxious Child?
  • I stumbled across an old journal last week.

    It was for the year 2010 when my oldest son was six and my youngest, three.

    I read through it and smiled at all the cute sayings and sweet moments, grateful I had taken the time to record them. (I had completely forgotten that my little guy said "Betty" instead of "belly.")

    I also read through a year's worth of fears, concerns, and prayers.

    All year-long, for both of my boys, I wrote about their increasing levels of anxiety and worst of all, my seeming inability to help them. Read on...

  • Study identifies predictors of early death among autistic people

  • People with autism who avoid social interactions or have troubles with daily living skills - from using a toilet to preparing meals - are at increased risk of an early death, a new study suggests.

    Autistic people are more than twice as likely as those in the general population to die prematurely. They are also at increased risk for a range of health conditions, such as diabetes and cancer, that can be fatal.

    The new study is the first to identify the specific factors that forecast mortality in autism. The researchers followed 406 autistic people in the United States over a 20-year period. They found that the 26 people who died during the study tended to have poor scores on measures of social ability or daily-living skills at the start of the study irrespective of age or health. Read on...

  • Family and Others Looking for Help!!!

  • Professional Office Available for Sublet

    Ideal opportunity for advocate, attorney, or professional. Large private office available with peek ocean views in Carlsbad. Includes wifi, use of conference room, lobby, and children's play area. $500 per month. Preferably someone who cares about and helps people with disabilities.

    Please contact Cara at caralucier@mac.com.


    Direct Support Professionals 1:1 (Little Italy)
    Hello! A young man and his family are looking for dependable, flexible, energetic, positive, and supportive individuals to work with him in the Little Italy area. This young man is a successful intuitive artist who sees emotion as color, and writes descriptions of what he sees. The young man has autism and communicates using assistive technology. He has a team of people that support him 24 hours per day. He has a rich full life with a thriving career, exercise, friends and participates in art gallery shows and art festivals. This is a rare opportunity to work with a gifted young man who struggles with sensory-motor challenges, and needs help with most aspects of daily living - but the gifts of working with this young man outweigh the challenges for the right individual. Training of support person will be provided on how best to support him in his daily life and in his method of communication (using letter board and iPad).

    We are hiring for two different positions:

    1. Community Support Facilitator - This person would fill in the hours of support mostly during the afternoon/evening hours, and support the young man during daily activities: painting at his art studio (in the East Village), food shopping, chores, social activites.

    2. Live-in Aide - As the live-in aide, this person would be assisting this individual during the overnight hours, 5 nights per week. Overnight support includes: implementing all safety features (i.e. locks, alarms, etc.), assisting with restroom (if needed), communicating with team members, and any other overnight support that may be needed. Position is Sunday through Thursday 11:00p.m.-8:00a.m. Live-in Aide would have own bedroom and bathroom, and pay a share of utilities and a small stipend for rent.

    Candidates for these positions would be individuals that are interested in a job that is diverse, intimate and always changing. The person we support relies heavily on his team for opportunities, safety, and a communication partner. Prior practical experience with autism, ABA ,OT, is helpful. The support staff hired will be paid $15.90 an hour, and will be working for the agency Lifeworks, who believe in Person-Centered Supports for people. To learn more about the agency, visit www.lifeworks-sls.com.

    Serious inquiries only. If interested, please send a copy of your resume to Chantal@autismcollege.com


    Seeking nanny with autism experience
    Position Type: Nanny in Poway

    Work Schedule: Part-time position, Monday-Friday from 12:15 to 5:15 (Desired start ASAP)
    Click here for all the info!!!


    I am looking for information on where to find Occupational therapy for an adult with disability's. Or a therapist interested in working privately at our east county home.
    Please respond at lfmarch@aol.com Thank you


    Hello, my family and I are relocating to SD county from the Napa area and were looking in Valley Center, Fallbrook area, as we have horses and would like to keep them with us, however, we are hearing those districts may not be the best choice for special needs kids and that we may be better off looking in Poway, Vista, San Marcos districts. My 8 year-old son is high-functioning ASD, very asperger-y lol (bright, funny, exceedingly social), also is medically fragile with lots of sensory needs and other developmental delays. I am in the market for new everything: feeding, occupational, social skills therapy, pediatrician, hair salon (for him), but I am most concerned about schooling options. He has been in gen ed with a 1:1 since Kindergarten, very bright, funny, active kid but seriously lacking pragmatic skills, very low threshold for frustration and as the educational demands increase so do his behaviors (nothing extreme, screaming, crying, putting head down on arm and crying-HATES SCHOOL), becomes extremely overstimulated in the gen ed environment which manifests in extreme tiredness (he only has one lung so that is part of it-when he gets overwhelmed it's like every ounce of energy is sucked out of him). IEP is next week, we will be pushing for a program at his current school, the model of which is for kids with ASD who function at or close to grade level, smaller class size (max 8), embedded behavioral services, 2:1 structured learning centers. He gets hospitalized a lot, misses a lot of school, you get the picture. Anyway, any recommendations would be super helpful. I'm also a special ed teacher, I know his rights and I have no issue engaging in a frank and candid exchange with teachers, admin or service providers. Please email me with your thoughts/advice. Thanks. Steph3425@gmail.com


    Hi, My name is Caryn Cole and I'm a Marriage, Child and Family Therapist, LMFT and an Autism Spectrum Consultant. I'm also a parent of a son with Autism. I am doing some of my own research on how to best support families with school age children on the Autism Spectrum on a deeper level. Will you please take a moment to fill out this brief survey? It will only take 3 -5 minutes. It will be very helpful to me and as a bonus to anyone of you who are open, I will be more than happy to provide a phone consultation plan like I do my clients that I work with based on how you filled out the survey.
    Link to Autism Survey: https://www.surveymonkey.com/r/3VNGJBX


    I am looking for occupational therapy, physical therapy or a personal trainer for my son. He is 12 and seems to have outgrown most o/t gyms. Looking for someplace with a gym big enough for big kids. I would also like to find a personal trainer with experience working with kids with special needs.
    Please send any ideas to me at nmshea1@hotmail.com



    If you have a question or request for this newsletter group, please send your email request to ValeriesList@aol.com. People who can help you will email you directly with their responses.

  • RDI and MORE at Therapeutic Approach to Growth
  • Therapeutic Approach to Growth believes that every individual is unique and has the potential for significant growth. We assume and foster competence while honoring family values and priorities. Our holistic approach is built upon trusting, supportive relationships and collaboration between disciplines and families.

    We specializing in the development and implementation of individualized comprehensive programs utilizing Relationship Development Intervention (RDI), Occupational Therapy, Sensory Integration, Sensory Processing, Applied Behavior Analysis, Art Therapy, and Life Balance Yoga Therapy.

    Offering support in the San Diego, Carlsbad, Orange County, and the Inland Empire.

    In addition to supporting our clients directly, we offer guidance to parents, grandparents, therapists, teachers, siblings, school staff, babysitters etc.

    Therapeutic Approach to Growth
    http://tagforgrowth.com
    admin@tagforgrowth.com
    (858) 689-2027

  • Best Buddies Friendship Walk
  • May 18, 2019 - Tecolote Shores on Mission Bay
    When we say walk, we really mean laugh, dance, play and connect. It's a celebration!

    Click here for all the info and to register or support!!!

  • Cara Lucier & Associates
  • At Cara Lucier & Associates we believe in the ability of every person to reach their potential. We believe that education is the key to opportunity. We advocate for the rights of individuals and their families:

    • IEP team meetings
    • Mediation
    • Due Process Hearings and Appeals
    • 504 Meetings and Appeals
    • Regional Center Meetings and Appeals
    • IHSS Appeals
    • Civil Rights Litigation
    For a free 60-minute initial consultation, please contact us at (760)505-2498.

    Law Offices of Cara Lucier
    Civil Rights and Education Law
    701 Palomar Airport Road, Suite #300
    Carlsbad, CA 92011
    caralucier@mac.com
    Phone: (760) 717-3451
    http://www.caralucier.com

  • Summer Programs Club Xcite
  • Transitioning into summer can bring on a lot of challenges, especially when it comes to staying on top of students developing skills and managing summer learning loss.

    At ClubXcite, our students THRIVE during the summer months. Our programs target skill building, while still ensuring that summer is how it should be- FUN! If you haven't yet, sign up for one or all of our amazing programs and start your summer plans TODAY!

    Mindful Adventures Summer Camp
    Designed to support children who have mild to moderate challenges in social settings due to social, behavioral or emotional struggles.
    http://www.exciteway.com/services/school-enrichment-programs/summer-camps/

    Brain Power Summer Camp
    Master executive functioning skills & strategies necessary for lifelong success in the 21st Century through fun games & activities to support in school learning in Math, English & other subjects!
    http://www.exciteway.com/services/brain-power-summer-camp/

    1-1 Summer Brain Academy
    Teaches students how to leverage their executive functioning skills so they can supercharge their brain with new strategies & improve their performance for the upcoming school year.
    http://www.exciteway.com/services/summer-tutoring/

    1-1 Summer Tutoring & Coaching
    Avoid summer learning loss! We empower our students to develop their own unique academic strategies to prepare for the upcoming school year.
    http://www.exciteway.com/services/tutoring/

    Education Related Mental Health Therapy
    Clinical therapy for students of all ages who are struggling with school related social, emotional or behavioral issues.
    http://www.exciteway.com/services/education-related-mental-health-services/

    Enrichment Summer Camps
    We offer a variety of unique and innovative after school and summer enrichment and skill-building programs. STEM, Arts, Sports and more!
    http://www.exciteway.com/services/summer-winter-camps/

  • Mastermind Autism and Aging, May 21st in Carlsbad
  • Hey Everyone
    I wanted to get together and chat about our kids and what happens next. As our kids are becoming adults it's hard to find programs, navigate transition, conservatorships and future housing alone. The emotions run high and I believe we can all come together and share our stories, knowledge and brainstorm for the future. All parents and caregivers welcome.

    I didn't want this to be affiliated with an organization. Just us parents/caregivers coming together to help one another. I wanted to focus on the teen/adult years in this mastermind.

    Dr Susan Daniel has graciously opened up her office for us all come together. 3144 El Camino Real, Suite 202, Carlsbad

    Please RSVP to mdaltoncook@gmail.com
    Thank you! Hope to see you on May 21 @630pm

  • A Parent's Guide to Autism
  • Tue, May 7, 2019
    6:00 PM - 7:30 PM
    Sanford Autism Consulting Office
    4823 Alfred Ave.
    San Diego, CA 92120


    Are you concerned about your child?
    --Do they struggle with language, behavior or social skills?
    --Prefer playing alone?
    --Struggle to start or maintain friendships?
    --Have meltdowns when routines change?

    If you can answer yes to one or more of these questions, you must attend this FREE community workshop!

    For all the info and to register, please click here!

  • Tennis clinics for children 6-12 for children on autism spectrum
  • tennis_icon.jpg

    What ... Tennis clinics for children 6-12 for children on autism spectrum. Each kid provided a one on one junior coach .

    When .... Saturday's 130-230

    Cost ... FREE

    Where ... La Jolla Tennis Club, 7632 Draper Ave, La Jolla

    Goals .... kids on ASD to learn independence, socialization and team work thru tennis ! Also to have tons of fun!

    Contact .... Susan Stuart, Call / text 8586992300 or email Lajollaskin@gmail.com

  • Beacons Spring Marketplace
  • Come to Beacons Spring Marketplace on Saturday May 4th! Local businesses, crafts, and gifts made by our young adults with disabilities! Percentage of profits benefit Beacons. https://www.beaconsnorthcounty.com

  • Summer Programs at Beacons
  • Beacons (north county program for young adults with special needs) is launching our Summer Program! Visit our website for details and we will have registration open soon! www.beaconsnorthcounty.com

  • Book: Autistic and Awesome
  • Alfonso Juli├ín is a unique writer because of his age and talent. He learned to communicate when he was 7 years old and showed that people with non-speaking autism have a lot to say and contribute. Autistic & Awesome is his opera prima where he presents a collection of his personal writings about his experience. Before, he seemed to have nothing to share, now his work shows us a complete, full and realized human being. Alfonso is now twelve, he lives with in Chula Vista, CA with his parents and brother. He continues to write and advocate for non-speaking individuals.

    https://www.amazon.com/dp/1095525735?ref_=pe_3052080_397514860

    Here is my FB page: https://www.facebook.com/alfonsojuliancamacho

  • ENGAGE & CONNECT at Kid Ventures
  • Engage & Connect is a program for the whole family of children with autism, ages 2 - 8 years of age.

    Activities include circle time, motor activities, and fun activities meant to increase communication and social skills, in a fun filled, creative environment.

    Sessions will be held on Thursdays from 5:15 PM - 6:25 PM on the following dates:
    May 9
    May 16
    May 23
    May 30

    To find out more, or to sign up on our interest list for our Spring session (May), please contact us at info@nfar.org, and give us your name, and the name and age for each child. www.nfar.org/what-we-do/engage-connect.html

    It's a way to engage and connect for the whole family!

  • Konnections Camp
  • Specialized Therapy Services is hosting a summer literacy and play camp for kids ages 2-5. The goal of the camp is to help young children develop school readiness and social skills. The camp will be lead by licensed speech and occupational therapists. Children with special needs are more than welcome!

    www.theoascenter.com/konnections-camp/

  • Preparing for High School and Beyond
  • May 9, 2019
    9:30 to 11am
    PLNU Graduate Education
    4007 Camino Del Rio South - Fourth Floor
    San Diego, CA 92108


    Please join other parents, caregivers and professionals at the following monthly informational and support group meetings in Mission Valley. These meetings will discuss the various aspects of autism through the lifespan. Each meeting will feature an expert speaker and an ASA parent mentor. This is a time for you to meet other parents, ask questions and network.
    The meetings are free and open to all.

    Please RSVP for Spanish Translation support
    For further information, please contact:
    Lisa Larsson - (619) 725-8080 ext. 7946 email: llarsson@sandi.net
    Maryann Collins - email: mcollins1@sandi.net
    Grace Fantaroni, Ed.D. - (619) 563-2839 email: gfantaro@pointloma.edu

  • Mainly Mozart's Mozart & the Mind

  • Mainly Mozart's Mozart & the Mind has been approved as a vendor for San Diego Regional Center clients! Use Vendor Number PY1606 to request regional center funding for this event! Find more details and registration information here:

    https://mainlymozart.org/mozart-the-mind-2019-calendar-events

  • ASD Mornings at the NAT
  • The San Diego Natural History Museum (The Nat) is pleased to offer a program for the Autism Spectrum Disorder (ASD) community: a once-a-month ASD Morning in which the Museum opens early for adults and children on the autism spectrum and their families, friends, and caregivers. This innovative program encourages individuals to explore, play, and discover the treasures The Nat has to offer in an environment that is comfortable for them.

    ASD Mornings take place the second Sunday of every month. The Museum will open at 9 AM*, one hour earlier than its standard 10 AM opening time, providing a quiet and less-crowded environment for visitors to explore the Museum's galleries at their own pace. In addition, on ASD Mornings the Museum will offer a "quiet room" from 9 AM to noon if visitors need a quiet space to decompress or desensitize. General admission rates apply during ASD Mornings.

    www.sdnhm.org
    877.946.7797

  • Autism Accessibility Morning at the Fleet!

  • The third Saturday of every month, Fleet invites the Autism Spectrum Community to enjoy our museum through this special opportunity. Adults and families with children with autism can enjoy the Fleet's exhibit galleries in a quieter setting, an hour before regular open hours to the general public and with access to a special cool-off space. Visitors are welcome to stay and enjoy the museum all day. Admission includes a special IMAX film screening at 10 a.m. with the house lights on and a lower soundtrack volume.

    For more information, visit www.fleetscience.org/events/autism-accessibility-mornings.

  • Everyone Deserves a Loving Home

  • Contact Lynn Scott for more information 619-954-7847 or lynn@guidinghands.org. www.guidinghands.org

  • Therapeutic Recreation Services Spring 2019 Calendar
  • Click here to view our new Spring 2019 calendar!!!

    Important dates to remember:
    Saturday, February 16, 2019 at 10:00 a.m.
    Registration begins for Spring activities

    Saturday, March 2nd, 2019 at 10:00 a.m.
    Registration begins for Summer Camps

    You may sign up online at SDRecconnect.com or at our office 3325 Zoo Drive, 92101.

  • Learn About RDI in San Diego!
  • Therapeutic Approach to Growth
    9466 Black Mountain Road
    Suite 100
    San Diego, CA 92126
    Phone: (858) 689-2027
    admin@tagforgrowth.com
    http://tagforgrowth.com

  • Learn About RDI in Carlsbad!
  • Therapeutic Approach to Growth
    5411 Avenida Encinas
    Suite 110
    Carlsbad, CA 92008
    Phone: (760) 448-5837
    cbadmin@tagforgrowth.com
    http://tagforgrowth.com

  • Participate in SPARK at UCSD

  • UC San Diego's Autism Center of Excellence is seeking individuals diagnosed with ASD and their biological family members to participate in SPARK, the largest national genetics research project in US history! The SPARK study aims to gain a better understanding of the causes and potential treatments of autism by building a cohort of 50,000 diagnosed individuals to facilitate research on an unprecedented scale. There is NO cost to participate in the study and it can even be completed without leaving the house!

    What we do
    SPARK researchers extract genetic data through a saliva sample and analyze information collected from thousands of people with autism and their biological parents. UCSD and over 20 of the nation's leading medical schools are part of this effort.

    How to join*
    1. Sign up online at www.sparkforautism.org/ucsd.sarrc -- registration typically takes about 20 minutes. Using this link connects you to our site, which enables us to better follow up with you if you encounter any issues or have specific questions.
    2. Complete a few questionnaires online.
    3. Provide a saliva sample. A saliva collection kit will be sent directly to your home after registration. When you are done, simply mail it back in the prepaid mailer.

    Benefits of joining
    1. Individuals with autism will receive gift cards valued at up to a total of $50 for participation.
    2. SPARK hosts monthly webinars, featuring psychologists, researchers, or speakers from the autism community, that provide useful information for families and individuals with autism.
    3. If a genetic finding is discovered related to the cause of autism, results will be shared back with families.
    4. The information you provide may help others with ASD for generations to come!

    *Our site also offers the option for home appointments where a member of our SPARK team can come to your home and assist you in the registration process, collect the saliva samples, and mail them in for you! This is typically the preferred method for families as everything gets completed at once. Please note that we ask that both biological parents and individual diagnosed with ASD be present for these appointments. We can accommodate a variety of dates and times outside normal business hours on the weekdays or weekends -- whichever is most convenient for you and your family! Alternatively, we can also schedule in-clinic appointments at our office if that is preferred.

    You can visit our SPARK FAQ page for additional details. Please contact us via email at mshir@ucsd.edu or via phone at 858-534-6906 if you would like to set up an appointment or if you have any questions!

  • Brain Imaging Studies for all Ages with or without Autism

  • The Brain Development Imaging Labs at San Diego State University are looking for individuals with diagnosed or suspected autism to participate in a brain imaging study. Participants would receive around $150 plus free cognitive testing and an MRI scan. Child participants would receive a free assessment summary and image of their brain as a bonus! We are looking to recruit from all ages, but we especially need adults, ages 40-65 years, to participate. If you know someone who might be a good fit for our study, please share this information with them. Thank you.

    At SDSU!!! To find out more, please call 619-594-0176 or email BDIL@SDSU.EDU.
    http://bdil.sdsu.edu/

     
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    Disclaimer

    I never endorse anyone or anything. Opinions expressed in what I send out, may not be shared by me. Everything is for informational purposes only.
    People who "advertise" through this newsletter have never been checked out by me. Same goes for the "Sponsors". This includes professionals and even people who are interested in babysitting, etc. So, please take the time to thoroughly check out anyone and everyone who will be working with or caring for your child/adult. We are all sadly aware, through news stories and word of mouth, of people who prey upon special needs children and adults because of their extra vulnerability.

    Valerie Dodd-Saraf
    President, Foggy Coast Ventures, Inc.
    Owner/Editor ValeriesList.com

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