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Autism: Finding Success the First Year. By Katie Wride, ASA-GPC Parent Mentor. 1 - Join a support group in your area -Online, in-person, Parent Mentors 2 - Get a diagnosis 3 - Contact DDD/ALTCS 4 – Contact your school district. 5 – Learn:

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Autism finding success the first year

Autism: Finding Success the First Year

By Katie Wride,

ASA-GPC Parent Mentor


What do i do first

1 - Join a support group in your area

-Online, in-person, Parent Mentors

2 - Get a diagnosis

3 - Contact DDD/ALTCS

4 – Contact your school district

5 – Learn:

- By reading books and websites off of suggested reading lists

- By attending local or natl. conferences

6 – Find local Doctors

(See co-morbid conditions)

7 – Begin therapies

(Agency and Parent-led)

8 – Find time for yourself

What do I do first?


1 join a support group

1- Join a Support Group

EAST VALLEY MEETING:

We are partnering with EVAN (East Valley Autism Network) and ABC(Autism Biomedical Connections) for this meeting each month

TIME: 7-9pm

WHEN:  4th Tuesday of each month

WHERE: Mi Amigo’s Mexican Restaurant-1264 S Gilbert Rd, Mesa, 85204

NORTH VALLEY MEETING:

TIME: 6:30 to 8:00pm

WHEN: 3rd Wednesday of the month

WHERE: Paradise Valley Community Center-17402 North 40th St.  Phoenix, 85032

WEST VALLEY MEETING

We are partnering with Shelly Vincant’s West side group for this meeting.

TIME: 7-9 PM

WHEN: 2nd Monday of each month

WHERE: New Life Community Church-8155 W. Thunderbird Rd.,  Peoria, 85381

Mom’s Meet Up

WHEN: Friday from 9:30 to 11:00 AM

WEST VALLEY: Wildflower Bread Company at Arrowhead Gateway17530 N. 75th Avenue Glendale, 85308

NORTH VALLEY: Paradise Bakery at Desert Ridge, 21001 N. Tatum Blvd., Suite 48-1520 Phoenix, 85050

EAST VALLEY: Barnes and Noble at San Tan Village, 2150 East Williams Field Rd #105  Gilbert, 85295


2 get a diagnosis

2 - Get a Diagnosis

You will need an Autism diagnosis (or an at risk for Autism before age 6) from a licensed psychologist or developmental pediatrician. (See Doctors who diagnose handout).


2 get a diagnosis some doctors that diagnosis

Joseph A. Gentry, Ph.D., BCBA

602.312.2911

www.gentrypbs.com

Chris Nicholls, PhD, ABPdN

Telephone number is 480-998-2303

Hoard, Cynthia E. EdD

602-616-9682

Michael LeVoie at Phoenix Children's Hospital

Sharon McDonough-Means

Developmental & Educational Psychological Services

(480) 659-5563

Contact: Carol McLean, Ph.D. Clinical Child Psychologist

Logerqist, Sally J. PhD

602-277-2273

Natasha Hill

www.hillchildcouseling.com

Dr. Alan Wexler

Val Vista and the US 60

Dr. Astrid Heathcote

480-275-2249 in Awahtukee

Christina K. Lebovitz, Ph.D

(480) 368-9898

E-mail: [email protected]

Programs in Developmental and Behavioral Pediatric CenterDevelopmental Evaluation Clinics, St. Joseph's Children's Health CenterTel: (602) 406-3543Contact: Dr. Daniel Kessler,

Dr. Karlsson Roth, Ph.D., Ltd.Tel: (602) 863-0101

Dr. Jan Blackham, PhD

Phoenix Children’s Hospital

602-546-0990

Lanie Y. Zigler. Ph.D., Neuropsychology Specialists

(602) 996-1396; (602) Email: [email protected] : www.azcns.com

Melmed CenterTel: (480) 443-0050Web site: www.melmedcenter.com

2 – Get a diagnosis – Some Doctors that diagnosis


3 contact ddd altcs

3 – Contact DDD/ALTCS

1. First - Contact DDD at:

  • Arizona Department of Developmental Disabilities602.542.0419www.azdes.gov/ddd/

    - Visit the Navigating the system guide at: https://www.azdes.gov/ddd/downloads/navigating%20web%20version.pdf

    Arizona Early Intervention Program for children 0-3 years oldwww.azdes.gov/azeip/azeipinfo.asp


3 contact ddd altcs1

3 – Contact DDD/ALTCS

In order to be eligible for DDD you must:

1- Be a resident of Arizona

2- Be at risk of having a developmental disability (before the age of 6); after the age of 6 you must have a diagnosis of : epilepsy, cerebral palsy, Autism, or cognitive disability

3- Must be diagnosed before the age of 18

4- Must have functional limitation in 3 of 7 major life areas: Self-care, receptive/expressive language, learning, mobility, independent living, self-direction


Arizona department of economic security division of developmental disabilities district offices

DISTRICT VII ADMINISTRATIVE OFFICES

Central Administrative Office

1789 W. Jefferson St. Phoenix, AZ 85007

602.542.0419; 866.229.5553

Health Care Services - 2200 N. Central Ave., 207 Phx, AZ 85004

602.238.9028; 800.624.4964

DISTRICT VIII (ATPC) -

2800 N. Hwy. 87 Coolidge, AZ 85229-1467

520.723.4151

TOLL FREE NUMBERS

Central Office: 1.866.229.5553

District I: 1.800.749.9490

District II: 1.877.739.3943

District III:

Flagstaff: 1.888.289.7177

Chinle: 1.866.560.8325

Show Low: 1.888.537.8013

Window Rock: 1.800.770.6493

Prescott: 1.888.289.2003

Tuba City: 1.866.283.4520

District IV: 1.877.739.3922

District V:

Globe: 1.877.227.1100

Apache Junction: 1.877.739.3926

ATPC: 1.877.739.3941

District VI: 1.877.739.3938 x5625

DISTRICT I (MARICOPA COUNTY)

District Administrative Office*

4000 N. Central St., Ste. 900 Phoenix, AZ 85012

602.246.0546

*Intake 3 years old and over

Camelback Office - 2001 W. Camelback Rd. Ste. 170 Phoenix, AZ 85012 602.870.1721

Dobson Office - 163 N. Dobson Rd. Mesa, AZ 85201 480.890.7301

McKinley Office - 1824 E. McKinley St. Phoenix, AZ 85006 602.258.2375

Indian School Office (Intake 0-3 years - 1430 E. Indian School Rd., Ste. 205 Phx, AZ 85014 602.277.8724

Mesa Office - 1619 E. Main St. Mesa, AZ 85203 480.834.4233

Metro Office - 11225 N. 28th Dr. C-207 Phoenix, AZ 85029 602.375.1403

North Office - 14040 N. Cave Creek Road Phoenix, AZ 85022 602.485.0236

South Office - 2602 S. 24th St., Ste. 108 Phoenix, AZ 85034 602.231.9218

Southwest Office - 3802 N. 53rd Ave., #250 Phoenix, AZ 85031 623.845.9804

Tempe Office - 5038 South Price Road #114 Tempe, AZ 85282 480.831.0153

Gilbert Office - 2288 W. Guadalupe Rd. Gilbert, AZ 85323 480.831.1009

Avondale Office - 290 E. La Canada Blvd. Avondale, AZ 85323 623.925.5270

Surprise Office - 11526 W. Bell Rd. Surprise, AZ 85374 602.771.1700

ARIZONA DEPARTMENT OF ECONOMIC SECURITY Division of Developmental Disabilities District Offices


3 contact ddd altcs2

3 – Contact DDD/ALTCS

2. Second - contact Arizona Long Term Care to qualify for federal funding for services:(ALTCS)602-417-6600 –Phx office; 602-417-6400- Mesa office

http://www.ahcccs.state.az.us/Services/Programs/ALTCS.asp

-You will first have a financial interview over the phone to make sure that your child does not have more than $2000 in his/her name to qualify.

-Next you will have an interview to determine if your child is at risk for institutionalization. The interviewer will ask you questions from the PAS tool and you will need 40 points to qualify for services.

-Contact an ASA-GPC Parent Mentor to help you through this process.

-Arizona’s Health Care Cost Containment System AHCCS (state medical insurance)http://www.ahcccs.state.az.us/site/


4 contact your school district

4 - Contact your school district

In order to get appropriate services for your child in school, contact your local school district and ask in writing for a complete Educational evaluation to be completed on your child. They will have 60 days to evaluate your child.

To find your school district look up Arizona Department of Educationat:www.ade.az.gov or call 602-542-5393

Once your child is evaluated for Special Ed services you will have an IEP meeting to determine goals and what placement is appropriate for your child’s needs.

For more information on IEP’s and Special Education Law visit: www.wrigtslaw.com


4 contact your school district1

4 – Contact your school district

  • Here is a list of the PINS (Parent Information Network Specialists) in our area:

    Gila, PinalAmy Dill(480) 759-1029Maricopa - West(623 Area Code)Jill Castle(480) 699-0067Maricopa - East(480 Area Code)Barbra Ross(480) 607-3030Maricopa - Central(602 Area Code)Holly Reycraft(480) 726-7205

  • PINS are consultants who provide on-site and phone consultation, training, resources, and information and referrals to support parents of special education students.


5 learn

5 - Learn

Where to go for help or for more information

Arizona Center for Disability Law: Advocates for the legal rights of persons with disabilities* to be free from abuse, neglect and discrimination* to have access to education, health care, housing and jobs, and other services in order to maximize independence and achieve equality Visit: www.acdl.com Phoenix: (602) 274-6287

Arizona's Advocates:Assisting families in reaching the high expectations for your child and supporting successful navigation of the educational system to get the appropriate services and placement. These are experienced advocates here to help you gather information, understand the rules of the special education process, and to support you to plan and prepare for meetings. We bring knowledge, experience, and expertise to your child's educational meetings. www.ArizonaSpecEdAdvocates.com (602) 471-0346

Autism Society of America- Great Phoenix Chapter’s Parent Mentors

  • Call Cynthia Macluskie: (480) 940-1093 or [email protected]

  • Call Susan Sunseri: (602) 312-4997 or [email protected]

  • Katie Wride: (602) 295-8062 or [email protected]

    Raising Special Kids : a non-profit organization of families helping families of children with disabilities and special health needs in Arizona. All programs and services are provided to families free of charge. At all ages and stages of a child's development, Raising Special Kids supports parents through Parent-to-Parent programs, Special Education information, individual IEP consultation, training, and problem-solving support. Contact them at (602) 242-4366 or www.raisingspecialkids.org

    Arizona Governor's Council on Developmental DisabilitiesWorks to build bridges, increase understanding and create opportunities to banish misconceptions and change public policy: www.azgcdd.org


Autism book list these are some recommended book resources for families affected by autism

Autism Book ListThese are some recommended book resources for families affected by autism.

General Information

  • Beyond the Wall – Stephen Shore

  • Thinking in Pictures – Temple Grandin

  • Ten Things Your Child with Autism Wishes you Knew- Ellen Notbohm

  • Autism Spectrum Disorders from A to Z – Barbara Doyle

  • Top Ten Tips: A Survival Guide for Families with Children on the Autism Spectrum -Teresa A. Cardon

    Education

  • Visual Strategies for Improving Communication – Linda HodgdonThe Child With Special Needs: Encouraging Intellectual and Emotional Growth - Stanley Greenspan


Autism book list these are some recommended book resources for families affected by autism1

Autism Book ListThese are some recommended book resources for families affected by autism.

Early Intervention / Applied Behavorial Analysis (ABA)

  • Right From the Start - Behavioral Intervention for Young Children with AutismSandra Harris & Mary Jane Weiss - 1998

  • Let Me Hear Your Voice - A Family’s Triumph over Autism-- Catherine Maurice

  • Teaching Developmentally Disabled Children - The Me Book - O.Ivar Lovaas

  • Behavioral Intervention for Young Children with Autism, Maurice, Green & Luce

    Biomedical Treatments

  • Unraveling the Mystery of Autism and Pervasive Developmental Disorders, Karyn Seroussi, 2000

  • Biological Treatments for Autism & PDD, William Shaw, MD, 2003, 2nd Edition

    IEP / School Districts & Legal Issues

  • The Complete IEP Guide: How to Advocate for Your Special Education Child - Lawrence Siegel, 2007 ed

  • You’re Going to Love this Kid: Teaching Students with Autism in the Inclusive Classroom-- Paula Kluth

  • Wrightslaw: From Emotions to Advocacy, 2nd Edition --Pam Wright & Pete Wright


5 learn from websites

5 - Learn – From Websites

www.phxautism.org/resources.html

www.gfcfdiet.com

www.pecanbread.com (SCD)

www.autismndi.com

www.livingwithout.com

www.autism.com

www.autismwebsite.com/ari

www.danconference.com

www.kirkmanlabs.com

www.autismone.org

www.lovaas.com

www.otideas.com

www.apraxia-kids.com


6 find local doctors

6 – Find Local Doctors

Learn the co-morbid conditions and the specialists in the valley that will rule these out (See co-morbid presentation)

  • Seizure Disorders

  • Gastrointestinal Disorders

  • Immune Deficiency and Dysfunction

  • Hypothyroidism

  • Mitochondrial Disorder or Dysfunction


7 begin therapies

7 – Begin Therapies

Even before you are approved for therapies through the state, check your insurance company to see if they cover OT, Speech, and Physical therapy for your child. Contact the ASA-GPC Parent Mentors or the Autism Resource Guide From ASA-GPC coming at the end of the summer for a recommended list of agencies that provide these therapies.

Once approved through the state, often you will receive OT, Speech, Physcial, & Music therapies as well as Habilitation and Respite.


7 begin therapies1

7 – Begin Therapies

Therapies for Autism

Educational/behavioral therapies are often effective in children with autism, with Applied Behavioral Analysis (ABA) usually being the most effective. These methods can and should be used together with biomedical interventions, as together they offer the best chance for improvement. Parents, siblings, and friends may play an important role in assisting the development of children with autism. Typical preschool children learn primarily by play, and the importance of play in teaching language and social skills cannot be overemphasized. Ideally, many of the techniques used in ABA, sensory integration, and other therapies can be extended throughout the day by family and friends.


7 begin therapies2

7 – Begin Therapies

  • Applied Behavior Analysis:Many different behavioral interventions have been developed for children with autism, and they mostly fall under the category of Applied Behavioral Analysis (ABA). This approach generally involves therapists who work intensely, one-on-one with a child for 20 to 40 hours/week. Children are taught skills in a simple step-by-step manner, such as teaching colors one at a time. The sessions usually begin with formal, structured drills, such as learning to point to a color when its name is given; and then, after some time, there is a shift towards generalizing skills to other situations and environments. A study published by Dr. Ivar Lovaas at UCLA in 1987 involved two years of intensive, 40-hour/week behavioral intervention by trained graduate students working with 19 young autistic children ranging from 35 to 41 months of age. Almost half of the children improved so much that they were indistinguishable from typical children, and these children went on to lead fairly normal lives. Of the other half, most had significant improvements, but a few did not improve much. ABA programs are most effective when started early, (before age 5 years), but they can also be helpful to older children. They are especially effective in teaching non-verbal children how to talk. Parents are encouraged to obtain training in ABA, so that they provide it themselves and possibly hire other people to assist. Qualified behavior consultants are often available, and there are often workshops on how to provide ABA therapy.


7 begin therapies3

7 – Begin Therapies

  • Speech Therapy: This may be beneficial to many autistic children, but often only 1-2 hours/week is available, so it probably has only modest benefit unless integrated with other home and school programs. Sign language and PECS may also be very helpful in developing speech.

  • Occupational Therapy: This can be beneficial for the sensory needs of these children, who often have hypo and/or hyper sensitivities to sound, sight, smell, touch, and taste. Many autistic individuals have sensory problems, which can range from mild to severe. These problems involve either hypersensitivity or hyposensitivity to stimulation. Sensory integration focuses primarily on three senses — vestibular (i.e., motion, balance), tactile (i.e., touch), and proprioception (e.g., joints, ligaments). Many techniques are used to stimulate these senses in order to normalize them.

  • Physical Therapy:Often children with autism have limited gross and fine motor skills, so physical therapy can be helpful.


7 begin therapies4

7 – Begin Therapies

  • Auditory Interventions: There are several types of auditory interventions. The only one with significant scientific backing is Berard Auditory Integration Training (called Berard AIT or AIT) which involves listening to processed music for a total of 10 hours (two half-hour sessions per day, over a period of 10 to 12 days). There are many studies supporting its effectiveness. Research has shown that AIT improves auditory processing, decreases or eliminates sound sensitivity, and reduces behavioral problems in some autistic children. Other auditory interventions include the Tomatis approach, the Listening Program, and the SAMONAS method. There is limited amount of empirical evidence to support their efficacy. Information about these programs can be obtained from the Society for Auditory Intervention Techniques’ website www.sait.org.

  • Relationship Development Intervention (RDI): This is a new method for teaching children how to develop relationships, first with their parents and later with their peers. It directly addresses a core issue in autism, namely the development of social skills and friendships. Website: www.rdiconnect.com


A few agencies in the valley that provide therapy

A few agencies in the valley that provide therapy:

Affinity Family Care - www.affinityfamilycare.com

Arion Care Solutions - www.arioncaresolutions.com

Arizona Autism United (AZA United):www.azaunited.org

Baio Enterprises – www.baioenterprises.com

Boulder Mt Therapy - www.bouldermountaintherapy.com

Center for Autism and Related Disorders, Inc. (CARD) - www.centerforautism.com

Coester Cares Therapy Services, LLCwww.coestertherapyservices.com

Guthrie Mainstream - www.guthriemainstream.org

HOPE Group - www.hopegroup.org

Lauren's Institute for Education (L.I.F.E.)www.laurensinstitute.org/

Pediatric Language & Speech Specialistswww.pediatricspeech.net/

PlayABA - www.play-aba.com

S.E.E.K. Arizona - www.SEEKArizona.org


8 make time for yourself

8 – Make Time for Yourself

Be sure to use respite (babysitters) to get out and do the things you loved before you entered on the Autism journey.

Remember that marriage support is key-(Over 85% of marriages of parents of children with Autism end in divorce.)

Remember your other children – they need your love and attention too.

Be sure to have a hobby of your own, exercise, and even read for pleasure!

Even though there is a lot to handle with a child with Autism, you have to remember that this is a marathon and not a sprint.


Hope never give up

HOPE- Never Give Up!

You must never forget that there is hope, even when others may say there is not. With treatments like biomedical interventions, ABA, RDI, AIT, etc. children with Autism are getting better and recovering skills many never thought possible. YOU CAN DO IT!


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