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September 2006 Archives

September 1, 2006

Privacy Policy

This privacy statement was created in order to make obvious our firm commitment to your privacy. The following discloses our information gathering and dissemination practices for http://www.CandiceLange.com.

Information Collection and Use
CandiceLange.com is the sole owner of the information collected on this site. We will not sell, share, or rent this information to others in ways different from what is disclosed in this statement. CandiceLange.com collects a minimal amount of information from our users when commenting on blogs.

Cookies
Our web site uses standard log files and is not linked in any way to your personal information. We use one cookie supplied by the apache web server module mod_usertrack, which drops a session cookie named 'ph_session', to track visitors through our web site, but does not store any identifiable information. The sole purpose of this module is to automatically drop a cookie in your web browser to help track a user's session though our site to help improve usability. The life of this cookie is only one day.

Links
This web site contains links to other sites. CandiceLange.com is not responsible for the privacy practices of such other sites. We encourage you to be aware when you leave our site and to read the privacy statements of each and every web site that collects personally identifiable information. This privacy statement applies solely to information collected by this web site.

Security

This website takes every precaution to protect your information. When you submit sensitive information via the website, your information is protected both online and off-line.

We do everything in our power to protect your information off-line. All of your information is restricted in our offices. Finally, the servers we store personally identifiable information on are owned solely by us and kept in a secure environment, protected by a firewall, and kept within a locked room.

If you have any questions about the security at our website, you can send an email to security@candicelange.com.

Updating Personal Information
If your personally identifiable information changes (such as your email address), or if you no longer desire our service, send us an email at info@candicelange.com with the update information or request.

Notification of Changes
If we decide to change our privacy policy, we will indicate the change on our home page so you are always aware of any changes. If at any time we decide to use personally identifiable information in a manner different from that stated at the time it was collected, we will notify you via email. You will have a choice at that time whether or not you wish us to use your information in this manner. However, if you have opted out of all communication from the site you will not be contacted, nor will your personally identifiable information be used in this new manner. We will use information in accordance with the privacy policy under which the information was collected.

Contacting the Web Site
If you have any questions about this privacy statement, the practices of this site, or your dealings with this web site, you can contact the Webmaster at candicelange.com


Last Update: 9/1/2006

September 7, 2006

Clinic Trial Leads Us to Other Families with Pachygyria

What an incredible feeling I am experiencing. An hour ago I spoke with the mom of another boy who is similar to Corey's MRI. Before I felt like we didn't quite fit in anywhere and now Corey is not "alone" in his diagnosis. I laugh as I think of her telling me about her son with so many things as if she was talking about Corey. In this short amount of time we have exchanged our family pictures, stories, laughter and sadness, and hope to meet sometime soon.

Where do I begin telling you our story. I'll shorten it to this story and maybe someday the others can be shared.

A friend asked me if one of her friends could contact me for information on special needs. Her daughter was new to regressive autism and wanted to learn as much as she could. However, in our conversation she helped me more than I could ever imagine.

She had found out about www.clinicaltrials.gov through a family member who had cerebral palsy and went through a trial. This person was loosing their ability to walk and had a new surgery which saved his walking to this day. Everything was free to him and he was treated very well. She went onto the site and found a study on regressive autism and her daughter just being diagnosed was place in the study in another state. Her whole family was flown to the clinic and given royal treatment. Her daughter and her now fly alone several times a year to participate - all at the clinical trials expense. She has learned so much about her daughter's condition and her daughter is receiving the most current care in the field.

After hearing her story, I got off the phone and typed in clinicaltrials.gov. I did a specific search for "children, seizures" and found 65 trials being done worldwide. None of them were of interest to me so I typed other words and found the clinical trial that brings me to writing this story.

Continue reading "Clinic Trial Leads Us to Other Families with Pachygyria" »

September 8, 2006

About This Site

Welcome and thank you for joining me on the journey to connect with others and find solutions.

Corey's diagnosis of Lissencephaly - Pachygyria made us distraught beyond words when we found on the internet only information saying his life expectancy was 20 years old. Mike, my husband, encouraged me and developed this website to reach out to the families with special needs and to especially let other parents with children who have mild Pachygyria know their child has a full life expectancy per Dr. Dobyns.

My hope is this site will bring comfort to families searching on the web for information on Pachygyria and Lissencephaly.

This is my family :)

Mike, Corey, Ashley and Candice Lange family photo taken in October 2005. Corey had just turned 7 years old and Ashley was 4 years old.

2005_Family_Portrait.jpg


CONTACT: Candice@sophtware.com

Motivational Stories and Sayings

This section of Motivational Stories and Sayings is intended to share those that have changed your life for the better. Also come back to read someone else's motivational stories and sayings on a day you need to be lifted up and inspired.

Special Needs

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.

September 10, 2006

Welcome to the North Gwinnett - Mall of Georgia Share Group

You are very welcome to join our group at any time or contact us for information or support.

The group began in September 2006 and has a wonderful group of people with children having a variety of disabilities. New people join us each meeting. In 2007 we are planning a dad's group and will continue family events. We hope this group will help you in your journey with special needs.

Bring your questions and stories to Chick-fil-A located outside of Mall of Georgia on the last Thursday of each month at 9:30am. We plan on the meeting lasting 90 minutes but you may stay longer if you wish. You can also come and go as you need. Drinks and a small breakfast will be provided by the FOCUS support organization.

Check the calendar on this site for updates on the meetings and other special needs events.

Thank you and we look forward to seeing you at the meetings.

Candice Lange, Coordinator
Cheryl Lambright, Co-Coordinator
Cathy Burson, Co-Coordinator

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

Continue reading "Welcome to the North Gwinnett - Mall of Georgia Share Group" »

September 12, 2006

Free - Reduced Tickets: Events for Special Needs

These venues host ongoing events and offer free or reduced tickets via Community Events at VSA arts of Georgia.

  • APEX Museum
  • Albany Museum of Art
  • Archibald Smith Plantation Home
  • Atlanta Botanical Gardens
  • Atlanta College of Art
  • Atlanta Cyclorama
  • Atlanta History Center
  • BellSouth Telephone Museum
  • Booth Western Art Museum
  • The Breman
  • Bulloch Hall
  • Carter Presidential Center
  • The Contemporary
  • Crawford W
  • Long Museum
  • DeKalb Historical Society Museum
  • Fernbank Museum of Natural History
  • Fernbank Science Center
  • Georgia Capital Building
  • Georgia Museum of Art
  • Georgia Music Hall of Fame
  • Gertrude Herbert Institute of Art
  • Governor’s Mansion
  • Hammond House Galleries
  • Hapeville Depot Museum
  • High Museum of Art
  • Hudgens Center for the Arts
  • Imagine It! CMA
  • Kennesaw Civil War Museum
  • Madison Morgan Cultural Center
  • Margaret Mitchell House
  • Marietta/Cobb Museum of Art
  • Michael C
  • Carlos Museum
  • Monetary Museum
  • Morris Museum of Art
  • Museum of Arts and Sciences
  • National Museum of Patriotism
  • Oglethorpe University Museum of Art
  • Sidney Lanier Cottage
  • Southern Museum of Civil War & Locomotive History
  • Turner Field Tour & Ivan Allen Jr
  • Braves Museum and Hall of Fame
  • Woodrow Wilson Boyhood Home
  • World of Coca Cola
  • Wren’s Nest
  • Zoo Atlanta

How can I get free tickets through VSA arts of Georgia?

Continue reading "Free - Reduced Tickets: Events for Special Needs" »

Keeping Records - General

If you just entered the world of special needs or been in it for sometime you probably have thought "What am I going to do with it all this paperwork and medical records?"

It is very important to keep your child's records organized to give them the best medical, insurance and school care possible.

This section will give you an excellent resource for special education, tips on handling the paperwork and form templates. Many of the suggestions come from the years of organizing my own son's papers and getting positive results from the doctors, medicaid and schools. It has also made my life easier knowing where to access the information when needed.

If you have a process that has been successful for you and the people working with your child, please make a comment and share your information.

If you need specific information and did not find it here, please make a comment and ask. I will find the information for you or someone else reading may also know the answer.


Chicken Squares - from the houseboat

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

Keeping Records - School

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.

Continue reading "Keeping Records - School" »

Corey's Favorite Toys

Krazy_Kar_Corey.jpg
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

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+)










Continue reading "Corey's Favorite Toys" »

September 14, 2006

Lange Therapy Room - The Sports Room

Therapy_Room.jpg
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.

Therapists

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
Noreen_treadmill.jpg

Marion Viar, OT
Marion.jpg


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

Continue reading "Therapists" »

September 15, 2006

Benefits Navigation for Special Needs - Adults

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.

Buy & Resell Exchange

This is a free section to sell your items.

Make a comment with your item description, how to be contacted, price, condition and any other helpful information. If you would like a picture attached make a note in the comment section and I will contact you directly through your email address for the picture.

It may take a day to post your items as each entry will be approved for distribution.

If your items do not sell, please consider one of the donation locations listed in Donation Resources where you can receive a tax deduction and help others. Also the lending libraries, therapy offices or doctor offices may be interested in your item.

Babies Can't Wait (ages to 3)

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.

Continue reading "Babies Can't Wait (ages to 3)" »

Power of the Ordinary

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

800+ agencies Helpbook - Gwinnett Coalition for Health and Human Services

The Gwinnett Coalition for Health and Human Services is a non-profit organization dedicated to addressing the health and human service needs of everyone in Gwinnett County, Georgia.

It does so through collaborative community planning, applied research, community education, membership diversity, consensus building, advocacy, and innovation.

The Gwinnett Coalition Help Book is an extensive listing of over 800 health and human service agencies including governmental, United Way-funded and other nonprofit organizations. This directory enables users to locate available human services in the greater Gwinnett County Area if they need help or want to help. Individuals in helping professions, schools, churches, civic organizations and the business community will find this directory an invaluable source of information.

http://www.gwinnettcoalition.org/helpbook.asp

We will take donations of household goods and clothing and give a receipt. These items are then passed on to a non-profit agency that needs them. Sorry, we do not make pick-ups.

750 South Perry Street Suite 312
Lawrenceville, GA 30045
Phone: (770) 995-3339
Fax: 770-995-1832
Email: Katie@gwinnettcoalition.org

Spectrum - Autism

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

Karen Addams

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.

Atlanta Alliance on Developmental Disabilities

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

Book helps moms meet their needs

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.'"

Continue reading "Book helps moms meet their needs" »

September 16, 2006

Inclusion vs Self-Contained: What's best for your child?

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?

Continue reading "Inclusion vs Self-Contained: What's best for your child?" »

September 17, 2006

CMS - Children's Medical Services

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.

Continue reading "CMS - Children's Medical Services" »

Atlanta Alliance on Developmental Disabilities

To make a donation to Atlanta Alliance on Developmental Disabilities - Donations

Clothing or Household Goods Pick Up: 404-761-6247

http://www.aadd.org/files/donate.html

AADD is celebrating our 50th year of serving the metro Atlanta area with high quality programs and services for people with developmental disabilities. Your donation helps support this continued work; we are proud of our efforts, and invite you to learn more about them at http://www.aadd.org/.

Thanks kindly for your help!

Maxwell High School of Technology

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.

Continue reading "Maxwell High School of Technology" »

"We Battle Over Our Autistic Child" - Can this marriage be saved?

"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.

Continue reading ""We Battle Over Our Autistic Child" - Can this marriage be saved?" »

September 18, 2006

Reaching for the Stars - Cerebral Palsy

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

RealAge, Inc.

Oprah suggests to take these tests. How old are you?


Welcome to RealAge!

Are you as young as you can be?

It used to be that aging was inevitable. Now you'll notice
that some people look their age, and some people don't.

Research now proves that you can look and feel younger
than your calendar age . . . without expensive products
or procedures. The secret is in how well you take care of
yourself. That's where RealAge can help.

Below are just a few of the RealAge tools that can help
you look and feel younger in as few as 90 days:

Continue reading "RealAge, Inc." »

Abilitations Special Needs Catalog

About Abilitations

At Abilitations we put fun in function. Our catalogs, products, and information provide solutions for professionals and parents working with and raising children with special needs.

We bring fun and function together as we select and create product for

Physical Therapy
Occupational Therapy
Speech Therapy
Special Education
Adapted Physical Education
Home
School

Continue reading "Abilitations Special Needs Catalog" »

Have A Great Special Needs Product Idea?

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.

Occupational Therapist Informative Articles

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

Continue reading "Occupational Therapist Informative Articles" »

Product Safety

Consumer Product Safety Commission
http://www.cpsc.gov

Phthalates in Teethers, Rattles and Other Children's Products
http://www.cpsc.gov/cpscpub/prerel/prhtml99/99031.html

National Associations

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

Vision Therapy

Vision Therapy Resources

College of Optometrists in Vision Development
Information on vision therapy, what conditions benefit from vision therapy, where to find a qualified professional, and links.
http://www.covd.org

Optometric Extension Program Foundation
Referral list of optometrists, a resource center, news calendar of events, etc.
http://www.oep.org

Optometrists Network
A national network of optometrists, comprehensive vision care, pediatric eye care, visual health, vision therapy, behavioral optometry and more.
http://www.optometrists.org

Optometrists Network -Children With Special Needs
Information on vision problems that effect children and resources to find doctors.
http://www.children-special-needs.org

Optometrists Network -Vision 3-D
3-D exercises, games, puzzles, vision therapy information, visual training information, visual perception information, stereograms and much more.
http://www.vision3d.com


Parents Active for Vision Education
PAVE is a parent / lay non-profit organization which serves as an educational resource and support organization whose mission is to raise awareness of the crucial relationship between vision and achievement.
http://www.pavevision.org


Dr. Cook in Georgia was referred to me as a good vision therapy eye doctor.

Embrace Life’s Challenges

Final Mike Sherman column: Embrace life’s challenges

This season was a rough one. It was revealing in many ways. It was not an experience a player, coach or fan will want to revisit anytime soon.

Although the disappointment and frustration of losing weighed heavily on me, when I look back on this season 10 or 15 years from now, it will hold a special place in my memory.

It is through the more difficult times in our lives that we are revealed to those around us. Either we like what we see and embrace it, or we don’t like what we see and change it. Sometimes, we look away and do nothing, and that’s the worst response of all.

How we respond to adversity and the difficulties we face are a healthy part of our lives. We should view them and respond to them as challenges, rather than obstacles or failures.

Continue reading "Embrace Life’s Challenges" »

Welcome To Holland & About the Author

Welcome To Holland By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved.


About the Author

Emily Perl Kingsley
Journey of Hearts
A Healing Place in CyberSpaceTM
Emily Perl Kingsley

Emily Perl Kingsley broke into television in 1963 doing Script Research for the CBS series EAST SIDE/WEST SIDE, starring George C. Scott. This was the start of a series of what she calls "dream jobs" including work on John Gielgud's NBC-TV special AGES OF MAN and THE DIARY OF ANNE FRANK. In 1967 she became Associate Producer of the ABC-TV game show EVERYBODY'S TALKING. Two years later, she did the film research and assisted in editing a feature-length documentary on Malcolm X which was distributed in theaters (the film which was later adapted by Spike Lee into a major motion picture).

In 1970, after a research-booking job on THE DICK CAVETT SHOW and a stint as Talent Coordinator for the 22nd Annual Emmy Awards Show, Ms. Kingsley joined the Children's Television Workshop as a writer for SESAME STREET. She has been writing scripts and songs for the popular children's television show ever since and, in addition, has written about 20 children's books, two home videos (ELMO LEARNS TO SHARE and ELMO SAYS BOO) and many of her songs appear on
Sesame Street record albums, CDs and tape cassettes. Recently, she has written material for the CD-ROM versions of 101 DALMATIANS and THE LITTLE MERMAID for Disney Interactive.

She has received 12 Emmy Awards and 9 Emmy nominations for her work on SESAME STREET.

The mother of a child with Down Syndrome, Ms. Kingsley is a frequent lecturer on that subject and on mental retardation and disability rights. In 1976 she was elected to the Board of Directors of the National Down Syndrome Congress and was chairperson of their Adoption Committee. She served on the Board for nine years. She is co-chairperson of the Parent Assistance Committee on Down
Syndrome of Westchester County and has served as a member of the Westchester County Committee for the Disabled as well as the National Media Council on Disability, a national committee working to improve the ways in which people with disabilities are portrayed in the media. She currently serves on the Non-Traditional Casting Project, helping to encourage television and film casting of people with disabilities.

The story of her son, Jason, was the subject of an hour-long drama special, THIS IS MY SON, on NBC-TV in 1977. THIS IS MY SON was written by Allan Sloane, Ms. Kingsley's collaborator on the TV movie KIDS LIKE THESE.

Since then, Jason and his mother have appeared on such television shows as DONAHUE, GOOD MORNING AMERICA, DATELINE NBC, A.M. PHILADELPHIA, the ABC soap opera ALL MY CHILDREN, HOUR MAGAZINE, CBS SUNDAY, LIVE AT FIVE ACTION NEWS, CNN NEWS and many many others.

CHILDREN OF HOPE, a segment the Kingsley family did for NBC WEEKEND won an Emmy Award in 1979. An update on that segment aired on the premiere of Jane Pauley’s new show DATELINE NBC, March 1993 and won the National Media Award from the National Down Syndrome Congress.

Jason has appeared dozens of times on SESAME STREET, was featured on ALL MY CHILDREN and in December 1984 he starred in a full-length episode of the ABC-TV series THE FALL GUY with Lee Majors. In 1997 he guest-starred in an episode of TOUCHED BY AN ANGEL.

Ms. Kingsley was instrumental in accomplishing the comfortable integration of mentally and physically disabled children and adults into the format of SESAME STREET. She has written much of the material for the show using children and performers who have disabilities, such as Linda Bove, the Little Theatre of the Deaf and Itzhak Perlman, among others. In 1980 she received an award from the National Theatre of the Deaf in recognition of her work for the deaf and hearing-impaired.

In October 1994, she received an EDI Award from the National Easter Seal Society in recognition of her Sesame Street scripts which have treated disability issues and enhanced the “equality, dignity and independence” of individuals with disabilities. She received another EDI Award and a Grand EDI Award in October 1995 for a Sesame Street script about wheelchair accessibility. She received yet another EDI Award in October 1997 for a Sesame Street show which featured a wheelchair ballet.

In 1983 THE DAILY NEWS selected Ms. Kingsley as one of the Ten Volunteer Women of the Year. In 1984 she received the Media Award from the State of Ohio Department of Disability. In November 1985, she received the National Down Syndrome Congress's Exceptional Meritorious Service Award.

In March, 1987, the entire Kingsley family was honored at the Annual Friends of the Retarded Ball held by the Westchester Association for Retarded Citizens. On that occasion, March 21, 1987 was proclaimed "Charles, Emily and Jason Kingsley Day" in Westchester County by order of County Executive Andrew P. O'Rourke.

In 1988, Ms. Kingsley received the 1988 Humanitarian Award from the Girl Scouts of America, Westchester/Putnam Division, the Exceptional Service Award from the New Jersey Association for Retarded Citizens, the Distinguished Service Award from ARC/Union County and the Kathleen Arneson Award from the People-to-People Committee for the Handicapped. In March 1989 she was honored with the Humanitarian Award from the Association for Children with Down Syndrome. In June 1989 she received the Outstanding Achievement Award from the State of New Jersey Developmental Disabilities Council.

In 1990, Charles and Emily Kingsley were given the first annual “Kingsley Award” by the Down Syndrome Parent Support Group of Tampa, Florida. This award, named for the Kingsleys, will be given each year to acknowledge extraordinary service to mankind by a family.

In July 1990, the Kingsley family received the Special Achievement Award for Families from the Joseph P. Kennedy, Jr. Foundation. This award recognized the family for “contributing in an extraordinary way to improving the quality of life of people with mental retardation.” The award was presented at the gala celebration of the 100th birthday of Mrs. Rose Kennedy at Hyannis Port, Massachusetts.

Ms. Kingsley, in collaboration with Allan Sloane, co-authored a teleplay for a two-hour Movie-For-Television called 'KIDS LIKE THESE,' which dealt with her family’s experiences raising a child with Down syndrome. Tyne Daly, Richard Crenna and Martin Balsam and five youngsters, all of whom have Down syndrome, starred in this film which aired on CBS-TV on November 8, 1987 and on September 19, 1988.

KIDS LIKE THESE received the prestigious humanitarian award, the 1988 Christopher Award, as well as the 1988 National Easter Seals Communication Award. It won First Prize (Dramatic Category) at the Rehabilitation International Film Festival in Tokyo, Japan in 1988. In addition, KIDS LIKE THESE won the 1988 ARC of Excellence Award from the Association for Retarded Citizens of the United States, the Media Award from the National Down Syndrome Congress and the Community Service Award of Outstanding Service Through Media from the Association for Retarded Citizens of Norfolk, Virginia. It was voted Best Movie-of-the-Week at the 1988 Media Access Awards.

Since its initial airings on CBS-TV, KIDS LIKE THESE has been shown several times on the LIFETIME Cable Network, on the E! Cable Network and in many foreign countries.

Ms. Kingsley is the on-camera host of a Westchester County biweekly cable-TV show called FAMILY FORUM ON DEVELOPMENTAL DISABILITIES.

She has also co-authored, with Barbara Gibbs Levitz, a documentary film called EMPLOY•ABILITY, narrated by James Earl Jones and designed to encourage employment of individuals with developmental disabilities. EMPLOY•ABILITY was produced and sponsored by the Woolworth Corporation and the President’s Committee on Employment of People with Disabilities.

EMPLOY•ABILITY won a Gold Medal at the Questar Awards International Competition, a Bronze Plaque at the 41st Annual Columbus International Film and Video Festival, an EDI Award from the National Easter Seals Society, a Certificate of Creative Excellence from the US International Film and Video Festival, the New York Festivals Finalist Award and the Media Award from the National Down Syndrome Congress.

Ms. Kingsley is the author of the inspirational essay WELCOME TO HOLLAND which has been reprinted in many languages and in many forms all over the world. Dear Abby runs this piece every October to commemorate National Down Syndrome Awareness Month and it has been reprinted in CHICKEN SOUP FOR THE MOTHER’S SOUL. It has been used as the theme for several disability conferences, was worked into a patchwork quilt and is the subject of a series of oil paintings.
It was recently set to music as a choral piece by composer Terrence Minogue and was performed at a concert in Sacramento, California.

Ms. Kingsley lives in Chappaqua, New York. Two stepsons, Glenn and Todd, are grown and married. The Kingsleys have six grandchildren.

Charles Kingsley was a member of the Board of Directors of the Westchester Association for Retarded Citizens for 17 years, serving on 10 different committees. He was President of WARC for several years as well as Third and First Vice President and chairperson of several Board committees. He also served on the Board of Governors of the New York State Association for Retarded Children for 14 years. Charles passed away in 1997.

Jason Kingsley graduated in June 1994 from Lakeland High School in Shrub Oak, NY. He passed all of the New York State Regents Competency Exams in order to earn a full academic diploma.

With his friend, Mitchell Levitz, another young man with Down syndrome, Jason has written a book called COUNT US IN: GROWING UP WITH DOWN SYNDROME, which was published in January 1994 by Harcourt Brace & Company. COUNT US IN completely sold out the hardcover edition and is currently in its fourth printing in paperback. It has made the UPI Best Seller List and has won numerous awards, including the Washington Irving Book Award and the New York Public Library BEST BOOKS OF 1994 FOR TEENAGERS list, among others. COUNT US IN has been published in a Japanese language and a Hebrew language edition. A Spanish translation is being considered.

Jason recently graduated from Maplebrook School, a three-year post-secondary transitional program which has prepared him for independent living. He is now working as Assistant Cultural Arts Program Coordinator for Westchester ARC and has recently moved into his own apartment in Hartsdale, New York.

Last updated June 30, 1998 All material, unless otherwise specified, is copyrighted 1997-8 by Journey of Hearts A Healing Place in CyberSpace http://www.journeyofhearts.org/jofh. We invite you to share the information on this site with others who may benefit, but ask that you share from the heart only and not for profit.

September 19, 2006

Lavender weighted blanket / Spa products

Weighted_Blanket.jpg

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.

Continue reading "Lavender weighted blanket / Spa products" »

Grants

Grantionary
The Grantionary is a list of grant-related terms and their definitions.
http://www.eduplace.com/grants/help/grantionary.html

GrantsAlert
GrantsAlert is a website that helps nonprofits, especially those involved in education, secure the funds they need to continue their important work.
http://www.grantsalert.com/

Grant Writing Tips
SchoolGrants has compiled an excellent set of grant writing tips for those that need help in developing grant proposals.
http://www.schoolgrants.org/grant_tips.htm

Federal Resources for Educational Excellence (FREE)
More than 30 Federal agencies formed a working group in 1997 to make hundreds of federally supported teaching and learning resources easier to find. The result of that work is the FREE website.
http://www.ed.gov/free/

Fundsnet Online Services
A comprehensive website dedicated to providing nonprofit organizations, colleges, and Universities with information on financial resources available on the Internet.
http://www.fundsnetservices.com


eSchool News School Funding Center
Information on up-to-the-minute grant programs, funding sources, and technology funding.
http://www.eschoolnews.com/resources/funding/


http://www.gcdd.org/programs/grants/info/grant_programs.htm

GECIC - Gwinnett Early Childhood Interagency Council

Working together to serve children with disabilities

GECIC helps Gwinnett County parents find services and provide scholarships for preschool children with developmental disabilities up to their six birthday.

Services:
Evaluation and Testing
Home-based Programs
Nursing Services
Occupational Therapy
Parent Training/Counseling
Physical Therapy
Preschool Classes
Respite
Speech and Language Therapy
Special Day Care
Equipment Library
Vision and Hearing Services


Scholarships:
One application for up to $500 scholarship per family per calendar year to be submitted by the 15th of the month to GECIC. Scholarships are based on the Financial Analysis Form and subject to cost participation schedule.

GECIC Scholarship List of Approved Services and Items

Therapy Services:
Behavior therapy
Auditory Verbal Therapy
Music Therapy
Massage Therapy
Physical Therapy
Occupational Therapy
Speech Therapy
Special Instruction
BEGIN program - Vision therapy
Therapeutic Riding
Play Therapy
Hyperbaric Oxygen Treatment
Biofeedback

Transportation Reimbursement for Travel to Specialized Clinics/Hospitals and to Doctors and Therapy Appointments:
Car Service (taxi)
Gas/mileage
Parking Expenses
Airplane
Hotel Expenses
Rental Car

Reimbursement for Physician, Allied Health Expenses that are not reimbursed by insurance/Medicaid:

Developmental Pediatrician Costs
Cost participation for out of network physicians
Licensed Nutritionist

Equipment/Supplies:
Therapy Equipment that typical children would not use
Adapted Bicycle
Toys that have a developmental benefit
Instruments for Music Therapy
Positioning items that typical children may use (ie. baby swing, highchair)
Assistive Technology
Glasses/ Hearing Aids
Medical Supplies
Prescriptions

Reimbursement for Other Expenses:
Formula
Tuition for Special Needs preschool
Summer day camp facilitated by a licensed therapist
Diapers
Hippo-therapy stable feeds
Nutritional Supplements
Respite Care

Parent Reimbursement:
Seminar related to their children's diagnosis
Transportation to seminar
Parent Classes
Family Counseling

Continue reading "GECIC - Gwinnett Early Childhood Interagency Council" »

September 20, 2006

Weighted Vest

weighted_vest.jpg


This weighted vest was made by my mom for my 5-6 year old son. The bottom has pockets all around and on the top of the shoulders to add weights according to the child's weight. The mesh fabric is designed to allow body heat to escape.

An occupational therapist should calculate the appropriate weighting and decide if this is an appropriate tool to use. There are health considerations to make before placing on a child.

$30 plus shipping costs
Contact Candice@sophtware.com

September 22, 2006

Adversity

In studying the lives of people of greatness, so often,a common thread seen is adversity and how they responded to it.  When asked about the many obstacles, they said adversity has made them stronger, wiser, and tougher. It has given them endurance, patience and stamina.  For example, Abraham Lincoln our 16th President, born in poverty, ran for office eight times and lost, failed in business twice and suffered a nervous breakdown.  He could have quit but didn’t.

So often we want to save our children from life’s struggles.  We do not
want our children to have to face adversity, but adversities are going to
come.  The answer will depend on how we respond.....

Continue reading "Adversity" »

September 24, 2006

Playroom Organization

Playroom Organization contains products or ideas that are useful for organizing the playroom.

Please add your own products that work great for you to share with others by clicking on comments. If you have a picture you would like to add, state so in the comment field. I will contact you by email to receive the picture(s).

Tip #1:
Bookcases are a great investment for any age child to store their belongings. Bookcases can evolve as the child grows older where some of the toy storage items will be disposed of after a certain age. Bookcases are the best buy for your money. To store small items on the bookcase use clear plastic bins without the lids. The child can see what's in the bin and can take the bin down from the bookcase easily. Cleanup is also easier when each item has a specific place to be put away. Label the bins with a picture of the toys and/or words.

Continue reading "Playroom Organization" »

Special Needs Books

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.

Continue reading "Special Needs Books" »

The Division of Mental Health, Developmental Disabilities and Addictive Diseases

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.

Continue reading "The Division of Mental Health, Developmental Disabilities and Addictive Diseases" »

Brain Injury Survey through Oregon Center for Applied Science

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

Continue reading "Brain Injury Survey through Oregon Center for Applied Science" »

September 25, 2006

Dr. William Dobyns - Human Genetics

Since this posting was created Dr. Dobyns has moved to Seattle to continue research.

New address:

Please send all samples and records to:

Seattle Children's Research Institute
1900 Ninth Avenue, 10th Floor
Seattle, WA 98101
206-884-1025

To schedule a clinic appointment with Dr. Dobyns:

Family Service Coordinators for Genetics
206-987-2665

William B. Dobyns, M.D.
Seattle Children's Research Institute
Center for Integrative Brain Research
1900 Ninth Avenue
M/S C9S-10, Room 1020
Seattle, WA 98101
Office: 206-884-1025
Fax: 206-884-1210
e-mail: wbd@u.washington.edu


Overview

From: http://www.seattlechildrens.org/medical-staff/william-b-dobyns/

See this site also for a listing of his publications and research funding.


Board Certification(s): Medical Biochemical Genetics and Psychiatry
Mayo Medical School, Rochester
Residency: Gundersen Medical Foundation - La Crosse Lutheran, La Crosse, Pediatrics
Fellowship: Baylor College of Medicine, Houston, Neurology
Mayo Graduate School of Medicine - Mayo Foundation, Rochester, Medical Biochemical Genetics

Research Description
William Dobyns, MD, has made major contributions to the field of human genetics, particularly the nature and genetic causes of developmental disorders including mental retardation, autism and brain malformations.

As both a medical geneticist and pediatric neurologist, Dr. Dobyns offers a rare combination of expertise. He examines patients with all types of genetic diseases, emphasizing children with complex developmental problems. He also offers genetic counseling for families of these children.

Dr. Dobyns is a recognized expert on many complex developmental disorders of the brain including mental retardation, autism, birth defects of the cerebellum such as Dandy-Walker malformation, and birth defects of the cerebral hemispheres such as microcephaly and megalencephaly (small and large brain size), lissencephaly or "smooth brain" disorder - (also pachygyria), and polymicrogyria (pebbled brain surface).

He has made significant contributions to the understanding, classification and genetic cause of many different developmental disorders.

Research Focus Area
Genetics and Developmental Biology, Developmental Cognitive Neuroscience, Neuroscience / Neurodevelopment

Continue reading "Dr. William Dobyns - Human Genetics " »

Toy Guide for Differently-Abled Kids

The latest version of the free toy guide is available at Toys R Us stores and online.

To view catalog online:
http://toysrus.richfx.com/catalog_toysrus/diffabled_06_t/diffabled_06_t.html

Continue reading "Toy Guide for Differently-Abled Kids" »

Georgia Government Officials

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.

Continue reading "Georgia Government Officials" »

Networking Sites

This is for sites that network parents of children with special needs either specific diagnosis or in general. Please send your sites that have been helpful to you for others to view. Thank you.

Continue reading "Networking Sites" »

Heidi J. Moore - Advocate

Heidi J. Moore

To stay up to date on Medicaid and other government issues concerning your children with special needs go to Heidi's website and become a subscriber.
http://www.lgtinc.org/authors/41/Heidi-J.-Moore?Page=4

DisabilityInfo.gov

DisabilityInfo.gov is a comprehensive online resource designed to provide people with disabilities with quick and easy access to the information they need. With just a few clicks, the site provides access to disability-related information and programs available across the government on numerous subjects, including benefits, civil rights, community life, education, employment, housing, health, technology and transportation.

DisabilityInfo.gov is managed by the U.S. Department of Labor's Office of Disability Employment Policy (ODEP), in partnership with 20 other federal agencies.

To view the site click on http://www.disabilityinfo.gov.

United Cerebral Palsy

http://www.ucp.org/

United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network.

Medicaid Waivers in Georgia

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.

Friends of Disabled Adults and Children (FODAC) - free items

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

Government Resources

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

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

Continue reading "Government Resources" »

Autism Family Support and DD Family Support - funding

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.

Health and Safety Products

Useful products that can make your life healthier or safer.

Continue reading "Health and Safety Products" »

September 26, 2006

Challenge Aspen

Challenge Aspen provides recreational and cultural experiences for individuals who have mental or physical "disabilities". We encourage family and friends to share in these experiences.

Challenge Aspen believes that access is the key to participation, and through participation, people with disabilities can break through barriers, unite with family and friends, and gain the self-esteem and confidence necessary to lead fulfilling, productive lives.

Working closely with Aspen Skiing Company and local outfitters the program offers a variety of daily activities such as skiing, whitewater rafting, horseback riding and fishing; Challenge Aspen also hosts a number of camps throughout the year. These camps include a mono-ski camp and a rock climbing camp for paraplegics and amputees, a ski festival for the visually impaired, and children’s art and music camps.

Challenge Aspen

Call/TTY: 970.923.0578
Fax: 970.923.7338

P.O. Box M
Aspen, CO 81612 USA
possibilities@challengeaspen.com
http://www.challengeaspen.com

Katie Beckett Medicaid Waiver information

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.

Continue reading "Katie Beckett Medicaid Waiver information" »

Seizure Support Groups - Parent and Teen Coping Groups

Parent Support Group and Teen Coping Group for Seizures


Helping Families Deal With Epilepsy
When a child is diagnosed with an illness, it affects every member of his family. That’s why the Children’s Healthcare of Atlanta Epilepsy Center offers support groups for both parents and children who are dealing with epilepsy.

Continue reading "Seizure Support Groups - Parent and Teen Coping Groups" »

Epilepsy Foundation of Georgia

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.

Continue reading "Epilepsy Foundation of Georgia" »

Directory to Connect Families

FOCUS Support and Share Group's Children's Directory is designed to connect families with other families of similar needs.

This information will remain confidential if you choose not to share the data but will be used by FOCUS organization to better serve you.

If you select yes to share this information with other parents your information will remain confidential amongst the support group.

Your information will not be placed on the website at any time.

Continue reading "Directory to Connect Families" »

Survey to Meet Your Needs at FOCUS Support and Share Group

Please take some time to fill out the survey so we can best help you at our support group meetings and on the website.

Continue reading "Survey to Meet Your Needs at FOCUS Support and Share Group" »

Letters Needed Now to Save PT / OT & Other Services

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

September 27, 2006

Multi-Sensory Rooms

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

This link shows the actual items used on three homes done on Extreme Makeover: Home Edition on ABC with Abilitations products. http://www.abilitations.com/productsHomeMakeoverOct3.jsp

You can receive free room design advice and information from Abilitations at
http://www.abilitations.com/multisensory/advice.jsp

September 30, 2006

Going to the Dentist - Sensory Defensiveness

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

About September 2006

This page contains all entries posted to Candice Lange in September 2006. They are listed from oldest to newest.

October 2006 is the next archive.

Many more can be found on the main index page or by looking through the archives.

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