Candice Lange

What is Genetic Testing?

A genetic test is the analysis of human DNA, RNA, chromosomes, proteins, or certain metabolites in order to detect alterations related to a heritable disorder. This can be accomplished by directly examining the DNA or RNA that makes up a gene (direct testing), looking at markers co-inherited with a disease-causing gene (linkage testing), assaying certain metabolites (biochemical testing), or examining the chromosomes (cytogenetic testing). Selected methodology terms are used in the GeneTests Laboratory Directory.

Genetic Tests for PACHYGYIA or Lissencephaly 1 (LIS1)

These tests were completed on Corey through Emory and Univ. of Chicago.

TEST 1: Lissencephaly Type 1: Miller-Dieker is the first Chromosome 17 testing done on Corey at Emory University. This test came back normal for Corey. 2006 (If normal do test 2)

TEST 2: Sequencing of the LIS1 gene can only be done at the University of Chicago or at two labs in Germany. This test came back normal for Corey. 2007 (If normal do test 3)

TEST 3: MLPA-based dup/del test - The yield is high, at least 1/3 chance of finding an abnormality. This test came back normal for Corey. 2007 (He is now a candidate for the research program with Dr. Dobyns.)

All the testing required just one blood draw at Emory in Atlanta. It was about 4-5 vials of blood but went quickly. Emory was very helpful working with Univ. of Chicago and the billing. The in state work on test 1 was covered by insurance and medicaid. The other 2 tests out of state are billed to my insurance and the remainder paid by us.

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Chromosome 17 has the "address" to LIS 1. To learn more about chromosomes and genetic testing visit http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/diseaseindex.shtml#tests.
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Syndromes with lissencephaly. I:
Miller-Dieker and Norman-Roberts syndromes and isolated lissencephaly.

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Although genetic testing shares some features in common with other kinds of laboratory testing, in many ways it is unique and requires special considerations.

http://www.doe.k12.ga.us/sb10.aspx - Application and the GA Department of Education Website

State Advisory Panel Q & A:

The article "What Are Special Needs" explains parenting a variety of special needs children.
http://specialchildren.about.com/od/gettingadiagnosis/p/whatare.htm

A Step Forward for Rehab Patients
By CYNTHIA McCORMICK
This is an interesting article to read.

"With wireless technology that makes it easier for the brain to communicate with muscles, 12-year-old Henry Ramage of Barnstable is walking with more speed and confidence.

To continue the article visit http://www.capecodonline.com/cctimes/astep2.htm

Topics for this news update include:

BILL SB 10 – GEORGIA SPECIAL NEEDS SCHOLARSHIP ACT

COLUMBUS SERVICES CONTRACT

ATTENTION PUBLIX SUPERMARKET EMPLOYEES

GOVERNOR PROPOSES THE USE OF TAXPAYER’S MONEY TO PROVIDE FREE HEALTHCARE INSURANCE FOR ALL STATE EMPLOYEES

Bowling League Or Open Bowl

Who: All children with special needs and their siblings, friends, and family
There is no age limit for the bowling. They have the very young to the very old.

League Session:
Winter session: TBI
Summer session: TBI

Open Session:
The Stars and Strikes Bowling Alley will allow bowlers to come and bowl on Saturday from 9am to 10:45am for the same $5 rate which is paid directly to the alley. Just tell them you are with Angels in the Alley. This is only for Saturday mornings at the time above.

Free registration for information on the autism spectrum and solutions for the behaviors. RDI is a family centered, cognitive approach to remediating autism developed by Drs. Steve Gutstein and Rachelle Sheely.

http://www.rdiconnect.com/register/default.asp

Registered RDIconnect.com members enjoy the added benefits of membership including the video clip library, live chats with Dr. Gutstein and Dr. Sheely, autism research summaries, and the message board.

See the Calendar of Events for the March 1, 2007 meeting about RDI in Gwinnett County.

For a thorough list of Summer Camps and other services log onto Parent to Parent http://www.parenttoparentofga.org/database.htm

Click on the large blue header called Special Needs Database.

Type of Service: Click on any service and scroll down to either CAMP:DAY or CAMP:OVERNIGHT.

Disability Served: Choose disability for CAMP:DAY*

Show Info.: Choose one.
Detailed Information for all the information.
Brief Information for the company name, phone number and city.

Click on Perform Search.

*Note:
Camp:Day has 134 listings. It needs a qualifier to reduce the list and show results.

Camp:Overnight has 67 listings so you do not need to put in any qualifiers to get the list. Just select Camp:overnight and press PERFORM SEARCH.

For registration forms and further information visit www.cfcml.com

Forsyth County Parks And Recreation Department

Weather Information Phone Number (770)886-2851
County Web Site www.forsythco.com

For other Cumming Miracle League questions contact:

C. Jerry Dupree
President, Board of Directors
Cumming-Forsyth County Miracle League
H - (770)844-9121
C - (404)312-0723
dupreek@bellsouth.net
www.cfcml.com

A comprehensive starting place for parents of children with disabilities is www.parenttoparentofga.org.

The Parent to Parent website provides detailed explanations of individual disabilities and available intervention and support resources.

Click on the navigation map to take a tour of services.

Local supporting parents comprise the Parent-to-Parent network. These parents are available to talk one-on-one with other parents.

This is a resource library that provides information to parents and professionals about any and all aspects of special education and community resources. There’s a very extensive collection of library materials available for check-out as well as switch toys and other items of interest for students, parents and professionals.

What types of resources are available through GLRS?

◆ Loan library of specialized instructional materials, software, and equipment
◆ Parent and teacher training workshops and classes
◆ Materials production area for users to make “hands-on” instructional materials
◆ Referral and information about services for students with disabilities
◆ Child Find program to identify children with disabilities and help find appropriate
programs for them

They have online manuals and resources for:
2006 Summer Camp Directory
Transition Manuals
MID Programming Guide
and other resources for parents and teachers

Metro East GLRS
2415 North Druid Hills Road, NE
Atlanta, Georgia 30329

(678) 676-2400
www.glrs.org

A friend was able to have free laminating done and used the boardmaker equipment. She suggested to give yourself enough time there to go through everything they have to offer.

This is a list of movies related to disabilities I found on Blockbuster website.
Please comment on your opinion of the movies and if they were worth watching.

Mozart and the Whale (2005)
Benny & Joon (1993)
David and Lisa (1962)
The Other Sister (1999)
I Am Sam (2001)
Mr. Rice's Secret (2000)
My Girl (1991)
Molly (1999)
Rain Man (1988)
Awakenings (1990)
A Beautiful Mind (2001)
Emmanuel's Gift (2004)
Good Luck (1996)
My Flesh and Blood (2002)
Who Are The DeBolts? (And Where Did They Get 19 Kids?) (1977)
How's Your News? (1999)
Running on the Sun: The Badwater 135 (2000)
Fielder's Choice (2005)
Door to Door (2002)
My Left Foot (1989)
A Science Odyssey: The Journey of a Century, Vol. 3 - In Search of Ourselves (1998)
First Do No Harm (1997)
Lorenzo's Oil (1992)
Mask (1985)
The Elephant Man (1980)

Interfaith Disabilities Network at the Bobby Dodd Institute is conducting a survey. All answers will be compiled in an official report, “The State of Faith and Disability in Georgia.” It is their hope that this report will drive the change necessary to bridge the gap between the disability and faith communities. Thank you.

http://www.surveymonkey.com/s.asp?u=105263028830

Any questions can be referred to Mark Crenshaw at Mark.Crenshaw@Bobbydodd.org

Here is the latest information from RFTS. Check out the information towards the bottom to donate money everytime you do an internet search without spending your own money.

If you're a parent, caregiver, relative
or friend of a child with Cerebral Palsy

Please Read And Spread The Word...

LongHorn Steakhouse is opening up their restaurant for the special needs community to visit Santa and Mrs. Claus for free. Bring your own camera and elves will help you take pictures. Donuts and drinks will be served.

December 9
8am - 10am

Please RSVP and thank them for this wonderful opportunity.

1800 Mall of Georgia Blvd.
Buford, GA 30519
Phone: 678/482-7750
Fax: 678/482-7710

Red-headed angel bears the message:
"Wishing you the kiss of an angel, the twinkle of a star, and the laughter of a child."

The cutest picture is available on the FOCUS website.

Use for the holidays or all year round!

One package of 25 cards and envelopes is only $10 each! Save on postage by visiting the FOCUS office. Shipping is $4.05 per pack. Proceeds except postage support FOCUS.

To order contact FOCUS or visit their website.

770-234-9111
inquiry@focus-ga.org
http://www.focus-ga.org

This unique water bottle has a special bible verse printed on the label to quench your thirst.
Whosoever drinketh of the water that I shall give him shall never thirst. John 4:14

"Hello, my name is Adam, let me tell you a fact. I was in a near fatal car crash about ten years ago but I had to make the decision to change my circumstance. So, one night I had this dream, or vision, like GOD was saying, "Adam, I want you to sell MY water." So, I found this company in South Carolina that would do what I was thinking and print little BIBLE versus on the label. It is simple, and the water is so good it sells itself. And the little verse, on the label, should perk -up some ones day.
OK, I am going to ask a little favor, pack it in your kids lunch box, share some with your neighbors, use it as an outreach ministry. I need some help spreading GOD's healing word!"

GOD Bless y'all,
Adam Michelsen
President and Co-Founder

Adam's product is Living Water For The Soul.
The water bottles make great inserts in gift baskets with this uplifting message. Also great for church functions, teacher gifts, or your personal thirst quencher.

For orders contact Adam Michelsen at 678-978-1546.

Thank you for supporting Adam and Living Water For The Soul!

Hebron Baptist Church
202 Hebron Church Road / PO Box 279
Dacula, GA 30019-0005
www.hebronchurch.org

Melissa Sims, Children's Director
msims@hebronchurch.org
770-277-6022

Special Needs Program
Sunday mornings:
Special Needs 1 designed for children 9+ 8:15/9:30/11am Room E105
Special Needs 2 designed for children 4-8 9:30/11am Room E104

Wednesday Awana 6:45 - 8:15pm

Parent's Night Out:
Second Saturday of each month from 5-9pm for the special needs child and siblings.
See the Calendar of Events for each months date and registration information.

From their brochure:
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man or his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." John 9:1-3

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North Metro First Baptist Church
1026 Old Peachtree Road NE
Lawrenceville, GA 30043

Special Needs Ministry - Sunday Services as well
For more information, please call Todd 770-995-9055 Ext. 777

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Lawrenceville First United Methodist Church
395 West Crogan Street Lawrenceville, GA 30045

Allen Whittaker, Director of Youth Ministries
FUMC Church Office: 770-963-0386 x 120
Christy Hinson 770-736-2752
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Sugarloaf United Methodist Church
1795 Old Peachtree Rd NW Duluth GA
Social Program for the special needs child. See Social Programs or Calendar of Events for more information and dates.
Contact Vicki LaRoach:
salvwl@aol.com 404-932-3953

Visit http://concretechange.org/ to learn more about making every home visit-able by everyone which includes larger doorways on main floor, entrance and bathrooms on the main floor that are accessible.

To speak directly to someone regarding Medicaid eligibility issues or concerns contact:

Mr. Brian Dowd
bddowd@dhr.state.ga.us
404-657-3596

The Department of Community Health is responsible for establishing procedures and policies in regards to payment of Medicaid including Katie Beckett Waiver. It establishes what paperwork must be submitted by therapists in order to receive payment. They approve the number of therapies to be provided as well as address related provider concerns.

The person to contact at DCH is:

Warren McNeill
wmcneill@dch.ga.gov
404-651-9974

Applications are being accepted until December 1, 2006 for U.S. applicants.

Visit http://vsarts.org/x22.xml for more information or call 1-800-933-8721.

Applications can also be received by contacting Elizabeth Labbe-Webb at 404-221-1270 x 207 or Elizabeth.labbe-webb@VSAartsGA.org after reviewing the guidelines and eligibility on the web.

FACES: For People with Developmental Disabilities - Facilitating, Advocacy, Care, Education, & Shelter

FACES is a program designed to residentially support children and adults with disabilities in their communities. Primarily serving individuals with developmental disabilities, this program seeks to provide them with a meaningful life by giving them guidance, encouragement, and support. This is accomplished in one of the following models:

Host Homes: provided by people wishing to open their home to welcome in adults with disabilities who might not have family or the means to support themselves in their own home. The host home makes every effort to help the individual feel that this is his or her home, too. The Host Caregiver becomes part of the individual's family and support network.

In-Home Supports: provided in the home of the individual needing supports. Often these individuals still have family or have the means to live in their own home if they receive basic support services. These In-Home Caregivers provide structure and meaning to the individuals' day by integrating them into their communities through, for example, shopping trips, trips to the library or other social outings.

Stories: Changing lives, different thinking, and supportive companions.

In the FACES program, a woman who had once lived in an institution, where she was one of many on the unit, now has a different life. She lives in a home with a family where the couple and their children bring their individual interests and attention to her. She enjoys the hustle of getting ready for school and having breakfast, the activity and serenity of attending worship services, and the warm lick of a big dog on an outstretched hand.

For another lady, the desire to help others and earn money too, has lead to her working in an office. There she helps with the chores of keeping the office clean and presentable, and engages in friendly exchanges with others sharing that space. However, like many of us, she is careful not to have her work interfere with her social interests of a boyfriend and sports.

Yet another has changed from his poorly fitted sweat pants and tee shirt uniform, in which so many with challenges are routinely dressed, into pants that button and a shirt with a collar. Now in going out to the store or to the mall, he smiles at those he sees, he walks with a taller stature and more confident gait and is becoming as he appears, another citizen in the community.

These are but small examples of how a change of thinking and intentional steps by companions sharing living in typical ways, do make a difference in peoples lives. Now you notice their faces and begin to wonder, how else are we alike?

Our offices in Atlanta, Albany, Rome, Savannah, Columbus and Athens are expanding services in and around these cities for all MHDDAD regions. For information on our program or to refer Medicaid Waiver Personal Supports Recipients to our program, please call 404-591-7044 and speak to Julia Bowen.

We just had a very pleasant experience. We have an adjustable bed that needed a repair. John Glee, owner of 'Heavenly Wheels, Inc.' came and made the repair in a total of 15 minutes. Most of the time was spent checking that the bed was working properly. He was so pleasant that we spoke for almost an hour, of several things, such as how did he get started in the business etc.. He repairs wheelchairs, all power chairs, including power scooters, adjustable beds, and most things on wheels. We highly recommend him. He does the repairs 'in home', gives free consultations, and takes care of people 24/7. His base is in Norcross, GA. - Hamilton Mill Resident

John Glee, owner of 'Heavenly Wheels, Inc.
404-408-2993
www.fixyourchair.com
johnglee625@yahoo.com

Exceptional Parent On-line information on special needs or printed magazine can be accessed at http://www.eparent.com/subscribe/default.htm.

Their topics include resources, education, healthcare, life planning, technology, mobility, sports and toys.

Finding More Funding for Your Child’s Special Needs Trust
By Renée Colwill Lovelace, mba, jd, cela

Here is a very thorough article on special needs trusts and funding of them.
http://www.eparent.com/lifeplanning/financial/financial04_05.htm

Easter Seals

Easter Seals website has a large section on Job Training and Career related topics.

"Employment provides the opportunity to participate as a member of a community. Easter Seals job training and employment services help people with disabilities learn skills to successfully enter the workforce, or to return to work after an illness or injury. Not only do employees benefit from the satisfaction of having a job, but businesses also gain from their contributions.

Easter Seals can help you determine what might work for you in reaching your employment goals. Contact Easter Seals to learn more about Easter Seals Job Training and Employment services in your area."

http://www.easterseals.com/site/PageServer?pagename=ntl_job_training

For a current funding list contact Parent to Parent of Georgia at 800-229-2038 and they will guide you to the right person or agency.

Some other funding sources:

Make a Wish
This is the link to the steps for having a wish granted.
http://www.wish.org/about/how_we_grant_wishes

Fragile Kids Foundation (The Foundation For Medically Fragile Children Foundation)
The parents or legal guardians of any medically fragile child age 18 or younger who live in Georgia may receive an application for assistance and be approved based on medical need and availability of funds.

Fragile Kids Foundation
3350 Riverwood Parkway,
Suite 1400
Atlanta, GA 30339

Phone: 770-951-6111
Email: help@fragilekids.org
Website: http://www.fragilekids.org/

FOCUS

770-234-9111
inquiry@focus-ga.org
http://www.focus-ga.org

FODAC
4900 Lewis Road, Stone Mountain, GA 30083
Phone: 770-491-9014
Website: http://www.fodac.org

Easter Seals
Easter Seals North Georgia
1200 Lake Hearn Drive
Web Site: www.northgeorgia.easterseals.com
E-mail: ddavidson@esng.easterseals.com
Phone: 404 943-1070
Fax: 404 943-0890

Services at this location:
Medical Rehabilitation & Health Services
Physical Therapy for children
Occupational Therapy for children
Speech Therapy for children

Columbus Community Services
To get on the planning list for services.
404-321-4574

Lions Clubs International Foundation
LCIF's grants are to Lions districts for the large-scale projects they do in their areas. A local Lions club can be found at www.lionsclubs.org

GA Programs for Children with Needs
888-651-8224

http://www.parentmentors.org

Topics on common special needs acronyms, IEPs, Inclusion, and more resources can be found at this site.

Parent Mentor Program: A joint venture between GCPS and the Georgia Department of Education, this program helps build a bridge between families and schools by developing understanding, respect, support, and the communication skills needed to support a home-school partnership focused on student achievement.

For more information click on http://www.parentmentors.org. This information is good but updated in 2003 so the contacts are not current. Contact Parent to Parent of Georgia at 800-229-2038 and they will guide you to the right person or agency.

Parent Mentors for Gwinnett County

Anne Ladd (2006 Mentor)
Gwinnett County Public Schools
437 Old Peachtree Road, NW
Suwanee, GA 30024-2978

Phone: 678-301-7212
Fax: 678-301-7222
Email: anne_ladd@gwinnett.k12.ga.us

Jackie McNair (2006 Mentor)
Gwinnett County Public Schools
437 Old Peachtree Road, NW
Suwanee, GA 30024-2978

Phone: 678-301-7149
Fax: 678-301-7222
Email: jackie_mcnair@gwinnett.k12.ga.us

Jennifer Briggs is President and founder of Briggs & Associates. After receiving her degree in special education from Xavier University, she spent some ten years working in various special education positions in Ohio and Georgia, specializing in vocational training and career development for adults with disabilities.

She founded Briggs & Associates in 1989 based on the philosophy that anyone who has the desire has the ability to be successful in the workplace. The company has grown to over 50 employees solely dedicated community-based supported employment, now serving over 475 people across Georgia.

Jennifer Briggs

Briggs & Associates
2300 Holcomb Bridge Road Suite 103, PMB 366 Roswell, GA 30076
Phone: (404) 290-6839
Fax: (770) 552-7051
Email: jennifer@briggsassociates.org

Enable America, Inc.
www.enableamerica.org/townhall_atlanta120803.htm
Published: 12/8/2003

Enable America, Inc.
www.enableamerica.com/townhall_atlanta120803.htm
Published: 12/8/2003

Sensory Integration Disorder (SID) - Sensory Processing Disorder (SPD)

This section includes websites and books that focus on Sensory Disorders. Please include your favorites in the comments section.

Websites:
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Child's Play
http://childsplay.home.att.net/
Site has topics relating to pediatric occupational therapy, sensory integration, and various developmental disabilities and an online opportunity to confidentially contact a certified occupational therapist with specific questions.
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Sensory Processing Disorder
Leading website with resources for individuals with SPD problems and for the family members, friends, therapists, physicians, teachers, and researchers.
http://www.sinetwork.org

Here is an interesting and informative article on all the sensory experiences that take place at the dentist and suggestions on how to make it more successful.

http://www.sinetwork.org/aboutspd/dentist.html
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Sensory Processing Disorder
Out-of-Sync Child
http://www.out-of-sync-child.com/
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Southpaw Enterprises for Sensory Processing Disorder (SPD), Sensory Integration Disorder (SID)
http://www.southpawenterprises.com/forums/
Behavior Forum
General Forum
Products Forum
Success Story Forum
Support Forum

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Here is a link to multisensory rooms with Abilitations on-line catalog.
http://www.abilitations.com/multisensory/multisensory.jsp

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For a FREE copy of the Integrations catalog, call 1-800-850-8602 or see http://www.integrationscatalog.com. Also view their Bright Ideas section on the web for articles such as:

Products That Hug And Squeeze Help Calm, Normalize And Integrate Sensory Information
Sensory Processing Issues = Sleeping Issues
What is Sensory Integration?

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Developmental Delay Resources (DDR)
www.devdelay.org
http://www.devdelay.org/issues.html#misc

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Sensorycritters.com
http://www.sensorycritters.com/cgi-bin/comcart/redeem.pl?aff=scsc146
Weighted products endorsed by Dr. Tony Attwood. Autism and sensory integration products, parent tips and resources.

Here is an interesting and informative article on all the sensory experiences that take place at the dentist and suggestions on how to make it more successful.

http://www.sinetwork.org/aboutspd/dentist.html

Parents need to contact their legislators and other leaders who make decisions about our children's well being before more services are lost.

Medicaid has cut services of Physical and Occupational Therapy for children to 2 times per month. Many providers have been spending excessive amounts of time trying to get Prior Authorization for more visits only to be denied. This is even after the doctors who take care of the children approve and prescribe more treatment. How many providers will continue to take medicaid patients?

Parents are the best advocates to increase or continue services for their children. They do not want to hear from providers. Please contact your leaders and start fighting for needed services for your children.

Tell them how the changes in CMOs are affecting you and your family.

Parents without CMOs also need to contact them to say how your child has a developmental delay and how the services have improved their lives and the community.

TODAY - Let them know how much your services are doing for your child and why they need to be continued at the current level - not decreased.

TODAY - Make sure your child gets the services they need to make a difference in their life and the community.

TODAY - Write the letter that could make the difference in your child's life.

List of Contacts:

Governor Sonny Perdue
203 State Capitol, Atlanta, GA 30334
404-656-1776
http://www.gov.state.ga.us/about_gov.shtml
http://www.votesonny.com/default.asp?pt=doc&doc=sonnydo

Lt. Governor Mark Taylor
404-656-5030

Abel Ortiz, Health Advisor to Governor Perdue
404-656-1776 aortiz@gov.state.ga.us

Dr. Medows, Commissioner of the Department of Community Health
404-651-8681 rmedows@dch.state.ga.us

Kathy Driggers, Manager of the CMO Systems, Dept. of Community Health
404-651-8681 kdriggers@dch.state.ga.us

Mark Trail, Chief of Medical Assistance Plans, Dept. of Community Health
404-651-8681 mtrail@dch.state.ga.us

BJ Walker, DHR Commissioner, Dept. of Community Health- Medicaid
404-651-6314 bjwalker@dch.state.ga.us

United States Senators
Honorable Saxby Chambliss (R), United States Senate, Washington, DC 20510
(202) 224-3521 (202) 224-0072 (Fax)
100 Galleria Pkwy SE, Atlanta 770-763-9090
http://chambliss.senate.gov

Honorable Johnny Isakson (R)
120 Russell Senate Office Building, Washington, DC 20510
(202) 224-3643 (202) 228-2090 (Fax)
http://isakson.senate.gov

United States Representatives
Find your representative in the House of the U.S. Congress
(202) 224-3121; (202) 225-1904 (TTY)
www.house.gov

The Epilepsy Foundation of Georgia is a non-profit organization dedicated to helping Georgians with epilepsy/seizure disorders. Based in Atlanta, the Foundation focuses on: educating the professional and general community about epilepsy through annual symposiums and programs held throughout the state; providing outreach through a statewide network of support groups; and assisting in quality of life issues through specialty camps for children/adults and medical referrals.

If you have any questions or concerns about epilepsy/seizure disorders you can contact our office in Atlanta at (678) 306-1210 or (800) 527-7105.

Topics included in order:

Katie Beckett Waiver Presentation given at FOCUS by Heidi Moore
Katie Beckett Waiver Denials
DHR FAQ for Transitional Funds
Contents For Katie Beckett Waiver Packet-samples of how to complete and forms
Katie Beckett Waiver Update on Denials and What to Do!
Katie Beckett Waiver History

The forms can be copied and pasted into your word processor to be filled out by you.

Thank you to all those who contributed very important information.

Useful products that can make your life healthier or safer.

Autism Family Support and DD Family Support

Designed to meet the needs of targeted families when other means or resources are not available. The Department of Human Resources has secured limited funding for focused support to families who have a family member with a Developmental Disability and Autism, PDD, or Asperger’s Syndrome living at home. Each Regional Board has been allocated this limited funding. The guidelines for accessing these funds fall under Family Support, though each Region might prescribe more specific requirements for obtaining support.

Funded services can include:

Respite Care
Environmental Modifications
Therapeutic Services
Personal Support
Counseling
Day Habilitation
Specialized Clothing
Specialized Diagnostic Services
Recreation/Alternative Activities
Specialized Equipment
Specialized Nutrition/Supplies
Medical Care

In Gwinnett, Rockdale, Newton, DeKalb, and Fulton Georgia Community Support and
Solutions distributes the funding. Application process or questions -- Contact Jennifer Crosby, Autism/DD Family Support Coordinator 404-634-4222, Ex.230.

List of sources in order. Continue reading for contact information.

1. Georgia Department of Community Health
2. Georgia Family Support Policy Council
3. PeachCare

Friends of Disabled Adults and Children (FODAC)
4900 Lewis Rd., Stone Mountain, GA

Free wheelchairs, disposable medical goods, assistance in home ramp, vehicle modification, etc.

They accepts donations for their thrift store.

Atlanta: 770-491-9014

Deeming Waiver (Katie Beckett)
For children under 18 with chronic medical conditions. Waives only the parental income requirements in order to receive Medicaid health care services. Provides Medicaid health care insurance. Managed by Department of Community Health. Apply through GA Medicaid Care Foundation.

Community Habilitation Support Services (CHSS)
This waiver was created to serve individuals who were moved out of Brook Run State
Hospital. It has the same eligibility requirements as the Mental Retardation Waiver
Program (MRWP). It has one bundled service which includes services such as
residential, day habilitation, supported employment. Managed by the Department of
Human Resources through MHDDAD.

Community Care Service Program (CCSP)
Covers Elderly and People with Disabilities who qualify for the level of care provided in nursing homes and need regular nursing care and personal care services, but can stay at home with home and community based services. Includes care coordination, home health, adult day care, alternative living services, respite care, personal support services, home delivered meals. Managed by Department of Human Resources through Division of Aging Services.

GA Pediatric Program Model Waiver (GAPP)
Covers children up to age 21 who are medically fragile with multiple diagnoses and
require continuous skilled nursing care. Provides in home private duty nursing services, medical day care services, transportation, personal care attendants. Managed through the Department of Community Health, through GA Medical Care Foundation.

Service Options Using Resources in a Community Environment (SOURCE)
Covers Frail Elderly and People with significant Disabilities who are Medicaid or SSI
eligible. Provides intensive case management, primary care physician services, and
service provided through CCSP. Managed through the Department of Community
Health, by applying through the site serving their county.

Mental Retardation Waiver Program (MRWP)
For people with mental retardation or developmental disabilities (e.g. cerebral palsy,
autism, downs syndrome, spina bifida) who require the level of care provided in an
intermediate care facility for people with mental retardation (ICR-MR) and are at risk of institutionalization.

Contact your government officials to support your child's needs.

Please add any one else in the comment area that might have been missed. Thank you.

Brain Injury Partners: Navigating the School System

Receive up to $100 to evaluate a program that teaches advocacy
skills to parents of children with brain injury. The Oregon Center
for Applied Science (ORCAS) is looking for parents/guardians of a
school-aged child with a brain injury to help us evaluate a web-
based program on advocacy skills. The research begins in early 2007.
You'll receive up to $100.00 to spend approximately two hours
viewing the program and completing three surveys. If you are
interested in participating in this evaluation please click the link
below and sign up on online at:

http://study.braininjurypartners.com

The Division of Mental Health, Developmental Disabilities and Addictive Diseases
(MHDDAD)

MHDDAD provides treatment and support services to people with mental illnesses and addictive diseases, and support to people with mental retardation and related developmental disabilities. MHDDAD serves people of all ages with the most severe and likely to be long-term conditions. The division also funds evidenced-based prevention services aimed at reducing substance abuse and related problems.

One of my friends, Lorena, works for the Gwinnett Public Library and said she would help us find good special needs books and keep us informed when new books arrive. You may also include your books if not listed already by making a comment.

Most of these books you can get at the library but I am including the Amazon.com account information so you can get reviews and other information on the books. There is no charge to look at this information. If you are not able to get to the library or want a copy for yourself you may purchase it through the Amazon link. There is no additional charge to order from my site but helps support this website. Thank you.

This is one of my all time personal favorites. It's a lavender weighted blanket with a removable inside that can be heated in the microwave or put in the freezer. The fabric is incredibly soft and can be washed. It fits my adult legs from toes to hips. It was originally intended to help my kids fall asleep faster or settle down but its a fight to see who gets it first - me or them. Maybe I should buy another one.

American Occupational Therapy Association
4270 Montgomery Lane
Bethesda, MD 20814-3425
800-877-1383
FAX: 301-652-7711
http://www.aota.org

American Physical Therapy Association
1111 N. Fairfax Street
Alexandria, VA 22314
800-999-APTA (2782)
FAX: 703-706-3396
http://www.apta.org

American Therapeutic Recreation Association (ATRA)
Recreational therapists are health care providers using recreational therapy interventions for improved functioning of individuals with illness or disabling conditions.
http://www.atra-tr.org

Council for Exceptional Children
http://www.cec.sped.org

Epilepsy Foundation
4351 Garden City Drive
Landover, MD 20785
800-EFA-1000
FAX: 301-577-2684
http://www.efa.org

International Dyslexia Association
http://www.interdys.org/

National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Plymouth, MN 55447
612-553-0020
FAX: 612-553-0167
naf@mr.net
http://www.ataxia.org

National Down Syndrome Society
http://www.ndss.org/

National Information Center for Children and Youth with Disabilities
P.O. Box 1492
Washington, D.C. 20013-1492
800-695-0285
FAX:202-884-8441
nichcy@aed.org
http://www.nichcy.org

National Lekotek Center
Expert advice on toys toys and education for those with disabilities.
2100 Ridge Avenue
Evanston, IL 60201-2796
800-366-PLAY
FAX: 847-328-5514
lekotek@lekotek.org
http://www.lekotek.org

Spina Bifida Association of America
4590 MacArthur Blvd. N.W., Suite 250
Washington, D.C. 20007-4226
202-944-3285
FAX: 202-944-3295
sbaa@sbaa.org
http://www.sbaa.org

Families with Children with Disabilities
Families coping with children with disabilities and the overwhelming financial burdens may contact the Federal Interagency Coordinating Council, an agency created to coordinate services for families with children 0 to 8 with disabilities or those at risk for developing disabilities.
http://www.fed-icc.org

Integrations catalog director Sue Wilkinson (occupational therapist) has written and compiled these informational articles just for you and your children.

When I was going through the Abilitations website I found a category that allows you to Submit Your Product Idea to Abilitations. How many of you have woken up in the middle of the night with a solution that hasn't been developed yet for your child and wondered how to do it? This is the perfect place to see where your ideas can take you and help others.

See http://www.integrationscatalog.com/submitIdeas.jsp for their instructions and contact information. Each catalog on the left of the website page has different information for submitting your ideas so check out each one.

Reaching For The Stars. A Foundation Of Hope For Children With Cerebral Palsy was started by Anna Marie Champion and Cynthia Frisina Gray in late 2004. We are two mothers determined to go above and beyond what is currently possible to make a profound difference in the lives of our children and others, who suffer the negative physical, emotional and social impact of Cerebral Palsy. We saw the need that exists for more progressive research on the causes and possible cures and treatments for children with CP. We realized…."if not us…then who?"…and RFTS, Inc. was born.

RFTS Mission: Foster national Cerebral Palsy research with the goal of expediting the creation of new medicines and effective treatments for children with Cerebral Palsy.

We will also focus on:

• Building community awareness, education and patient advocacy, on a nation-wide basis, among care givers and health care providers regarding new and promising research, treatments and therapies.

• Developing and promoting new discoveries and clinical research programs that will advance the pharmacological, surgical and therapeutic treatment of CP.

For more information on this organizations, see http://www.reachingforthestars.org/index2.htm

"Can this marriage be saved?" by Cynthia Hanson

Topic: We Battle Over Our Autistic Child

This article had some helpful insights on parent relationships when under great stress.

Maxwell High School of Technology is high school that offers career and technical education programs. It provides students who are focused on their future with a solid foundation for a successful career. Students receive unparalleled instruction in a variety of career and technical education programs that include auto collision repair, auto services, commercial art, computer aided drafting and design, computer technology, construction, cosmetology, electronics, early childhood education, graphic arts, horticulture, law enforcement, medical services, and welding. Second year students may participate in the apprenticeship program, gaining invaluable hands-on experience by working in the real world with today's business leaders. Maxwell High School of Technology features cutting-edge courses and high-tech equipment and is open to all students from every Gwinnett County high school.

Children's Medical Services (CMS) directly provides or coordinates specialty medical evaluations and treatment for eligible children (birth to age 21) with chronic medical conditions. CMS provides or pays for comprehensive physical evaluations, diagnostic tests, inpatient/outpatient hospitalization, medications and other medical treatments, therapy, durable medical equipment, hearing aids, and dental care related to the child's CMS-eligible condition. Genetics Services provides diagnosis, counseling, and treatment for a wide variety of genetic conditions as a CMS service. CMS works closely with the primary care provider to coordinate services. The focus of Children's Medical Services is to provide quality care and financial assistance with services that will enable children to receive medically necessary specialty services. These medical services may prevent further complications from their condition(s) and will promote healthy growth and development.

Recently I was reminded of the heartache about appropriate classrooms for our special needs children through a friend who was grieving the loss of inclusion as her son was being placed into a self-contained classroom. The school gave her son a 30 day trial in the regular classroom and a new IEP meeting was done to change him to the self-contained classroom. She had inclusion for her son for years in another county but with her recent move her son was also being moved into a new setting. I don't know the circumstances or if this is a good or bad change but it is a loss for what was wanted and hoped for. Many of you may have felt this before too.

Corey and I have done the range from full inclusion to full self-contained, with good and bad experiences and after 5 years I can say that there is a time for everything. Each type of classroom has its pros and cons. It really comes down to what is best for your child at that time in his life and who is the teacher. How will your child be taught? Will he be loved for who he is and given the opportunity to shine?

Book helps moms meet their needs

Atlanta mothers, Heather Fawcett and Amy Baskin, with special needs kids co-wrote "More Than a Mom".

Behind almost every special needs child, there's a mother -- a mother who is often frazzled, stressed, worried and exhausted and who rarely puts herself on her own "to do" list, according to Amy Baskin. She wants mothers of special needs kids to carve out some "me" time.

"There was lots of information about special needs kids and how to help them through sports and school. Heather and I would go to autism conferences all the time," said Baskin. "But nobody was talking about moms and how they are affected. And we thought, 'That's something we can write about.'"

The AADD has so many programs and support for the community it is well worth your time to look at their website for all the details. This is a section from their website.

"Our mission is to build communities of support, acceptance, and opportunity for children, adults, and families living with developmental disabilities. We believe people with developmental disabilities, and their families, are among the most challenged, excluded and vulnerable people in society. In response, AADD works to build strong communities that encourage and support all individuals to:

Make informed choices
Participate in sporting, social, and recreational activities
Live in safe and positive environments
Grow, develop, and access and utilize resources
Achieve health and wellness throughout their lives

For many of the people we support, AADD means the difference between stability and homelessness; sickness and health; isolation and inclusion; discrimination and dignity."

Just one of the services includes:
Community Service
- Family Support
- Supported Employment
- Project Future
- Project L.E.A.P.
- Women Against Violence

Atlanta Alliance on Developmental Disabilities
1440 Dutch Valley Place
Suite 200
Atlanta, GA 30324-5371

Website: http://www.aadd.org/
Tel. : 404-881-9777
Fax.: 404-881-0094

TTY Users: 1-800-255-0056 (GA Relay Center)
STS Users: 1 - 800-229-5746 (English)
1-800-260-9470 (Spanish)
Voice: 1-800-255-0135 (GA Relay Center)

To make a donation - Clothing or Household Goods Pick Up: 404-761-6247
http://www.aadd.org/newsite/schedulepickup.html

Hi! I am Karen Addams and I am a Partners in Policymaking graduate from 1995. My husband, Peter, and I live in Lilburn and have two daughters. Mary Anne has severe multiple disabilities and is 19. Caroline was born after graduating from Partners and is 11 years old. As a result of Caroline's speech delay and her involvement in the Babies Can't Wait program, I became a Parent Educator for Gwinnett/Rockdale and Newton Counties Babies Can't Wait program in 1999. I continue to work for Babies Can't Wait today, enjoying the interaction and mentoring with families of young children with special needs. As a Parent Educator, I have also been involved at a statewide level in parent trainings, program and policy planning and parent leadership programs.

In 2000, I started an internet discussion group for families in the Babies Can't Wait program (BCWFamilies). This group was so successful that I started another group for parents of school-age and adult children with disabilities in the state of Georgia (GA-ParentNetwork). This grassroots parent advocacy group of over 700 members allows
parents/guardians from across the state to discuss issues pertaining to their children's disabilities without leaving their home - something that many parents (like me) desperately need! In addition, to the BCWFamilies and GA-ParentNetwork, I now manage (with help) the Autism-GA group which has over 800 members consisting of parents and professionals involved in the autism community.

I am also involved with SPECTRUM (Gwinnett County's Autism Parent Group), the Gwinnett ICC (GECIC), the Rockdale/Newton ICC (RNICC), Parent to Parent of Georgia and the Georgia Parent Mentor Program. I am a former parent representative of the DOE State Advisory Panel for Exceptional Students.

Partners in Policymaking gave me the foundation for all the work that I do. I try to take with me the lessons of advocacy, partnership and respect for diversity into all the projects that I am involved with.

To contact Karen Addams email her at KAddams@aol.com.

SPECTRUM offers the following services so check out their website for current information and dates at http://www.atl-spectrum.com/.

Spectrum hosts monthly meetings with guest speakers who share their knowledge and expertise regarding Autism Spectrum Disorders.

Other Services:
Preschooler group
Asperger group
Sibling Group
Saturday Respite Program
Saturday Sibling Group
SKIP (Spectrum Camp Inclusion Project)
Friends Clubs
Five weeks of Summer Camps

Power of the Ordinary:
The everyday, ordinary activities of children and families provide incredible learning opportunities throughout the day. This site includes many ideas to assist families in making each moment filled with fun and functional learning. It includes links to the Everyday Times, a series of free and colorful photographic discovery pages which illustrate the everyday learning opportunities of children. The site is sponsored by the applied research center of the Orelena Hawks Puckett Institute.
http://poweroftheordinary.org

Babies Can't Wait (BCW) Early Intervention Because Babies Can’t Wait

Babies Can’t Wait is Georgia's comprehensive, coordinated, statewide, interagency service delivery system for infants and toddlers, ages birth to three, who have developmental delays or disabilities, and their families. Early intervention services may include assistive technology, audiology, family training and counseling, certain health services, medical diagnostic services, certain nursing services, nutrition services, occupational, physical, and speech/language therapies, psychological services, social work, special instruction, vision services, and transportation to services. The focus of Babies Can't Wait is to help reduce the need for special services later in life by helping children with developmental disabilities reach their maximum developmental potential.

Babies Can't Wait
Toll Free Phone 1-888-651-8224 or 1-800-229-2038
Atlanta (770) 451-5484
State BCW Office number (404) 657-2726
Visit their website, http://health.state.ga.us/programs/bcw.

The Handbook for Success in Babies Can’t Wait (English and Spanish Version) as well as an extensive web Directory of Internet Resources can be downloaded at http://health.state.ga.us/programs/bcw.

Sally Atwell is the person in charge of Benefits Navigation at Shephard.org. She can be contacted through Sally_Atwell@shephard.org.

This is a free service and she has been a wonderful resource to a friend of mine and her adult son.

Many of us have had some wonderful therapists we have worked with throughout the years. This is a great way to share our favorites with others who are searching. I have asked some of Corey's favorites to add their business information and you may do so also through the comments section.

Tender Ones Therapy Services
http://www.tenderones.com
Noreen Scott, PT

Marion Viar, OT

Kristin Hall, Kidspeech
http://www.kidspeech.net/

Here's our exercise room/therapy/play room we call our sports room. It's not fancy but the family has fun in it. Our basement is unfinished so I put the black tarp up to make a wall and the kids helped me decorate with their artwork. This room has changed through the years. In the beginning it had two baby swings and now in their place is the hanging bar and the single swing. We've added a punching bag we found at a garage sale for a great deal and Mary Jo Lathrop, a local personal trainer, showed us exercises for Corey and I to do. In the background you can see a yellow nubby ball found at the dollar store and two ball balancers found at a garage sale. Other things you can't see in the picture are the $5 foosball table and $3 tabletop basketball game found at garage sales in pretty good condition. We also have tennis rackets, baseball, exercise ball, hand ball, swoosh ball game, jumping ropes, and other miscellaneous sports equipment. For safety we added the mats. Making a special room for your kids and you to exercise and have fun doesn't have to cost alot of money and it is well worth the time and effort.

I'd love to see your special rooms you've created or are about to create. Please send a comment and make a note stating you have pictures for me to receive via email.

We bought this Krazy Kar when he was about 4 and he still uses it at 10. It can be used up to 80lbs. Corey loves to play bumber cars and chase his sister in it. He can also get a good spin going when he's in the mood.

Krazy Kar Using the hand cranks on the rugged 18" wheels, kids make the car go forward, backward, or spin in circles. A classic since 1968. This solid little Krazy Kar is a full three feet in diameter, supports up to 70 lbs., and is constructed of durable, heavy-duty plastic. Helps kids develop motor skills, physical strength, and agility. Made in the U.S.A. Some assembly required. Weight 20 lbs., Size 35"l x 33"w x 18"h. (Age 3+)

Keeping records for school has resources to better manage all the paperwork and tips from seasoned parents. Please see the next page for more information and post your tips under comments.

Recipe for chicken squares (serves 4):

3 oz cream cheese
2 tbs butter, melted
3 cooked, chopped chicken breasts
1/4 tsp salt
1/8 tsp pepper
2 tsp milk
1 tsp minced onion
1 8oz can crescent dinner rolls

- Mix cream cheese & butter, then add milk, salt, pepper, onions. Add chicken last.
- Separate dinner rolls to rectangles. Pinch middle to seal holes.
- Put 1/2 cup meat mixture into dough. Pull dough up and twist top, seal all holes.
- Squirt butter over top and sprinkle with Progresso Italian bread crumbs.
- Bake at 350 degrees for 25 min.

Note: for the houseboat lunch, I separated the dough into triangles and put in less meat, so that it made more of them. Also, you spoon the mixture into biscuits to make stuffed biscuits.

Thanks for sharing Melanie Durity!

Join her Support Group in South Cobb/Mableton area on Wednesday, September 13 at 7 pm at First Baptist Church, 5385 Church Street. Refreshments & child care offered! Please RSVP to this e-mail or call FOCUS.

Read about her family in the September 2006 FOCUS newsletter or learn more about FOCUS visit:
770-234-9111
inquiry@focus-ga.org
http://www.focus-ga.org

This section Special Needs is intended to connect all of us with family members that have special needs.

We each have learned so much along our journey even if we are just beginning it. Doctors and therapists do not have the time to tell us everything we need to know or may not even have the personal knowledge or experience to know what you need at the time. I welcome each of you to share your stories, successful tips, resources, etc.

Please keep this site positive as we each have our own experiences with certain people, treatments, diagnosis, etc. that may be different from yours. Its one thing to say it didn't work for us but no bashing of schools, professionals, or yourself. This way hopefully everyone will feel comfortable to make connections and find solutions.