Candice Lange

Duncan Creek Elementary School is celebrating Exceptional Children's Week January 11 - 15, 2010. We have many fun activities going on each day of the week to celebrate the children with special needs and the professionals who work with them. It will also promote awareness of disabilities and the challenges of those with physical or mental disabilities.

The three of the events below are open to all of Gwinnett County. Please feel free to advertise and pass along to those who would be interested in attending.

Duncan Creek Elementary School
4500 Braselton Highway, Hoschton GA 30548
On Hwy. 124 closest to Hamilton Mill Exit 120 off of 1-85

Celebrate Exceptional Children's Week, January 11 - 15

January 11, Monday: Parent Mentors of Gwinnett will be speaking on “Effective Communication between the home and school” at 10-11:30 am IEP Room 1.126

January 12, Tuesday: Parent to Parent will be giving a workshop on writing IEPs from 9-1pm. "Making the IEP Count: Focusing on a Vision and Strengths to Get to Measurable Goals". IEP room 1.126. Limited space. Please RSVP to Candice@sophtware.com.

January 13, Wednesday: Parents and students come cheer on our Special Olympic athletes at 9:15am in the main lobby before they leave to compete. Bring your pom poms and posters.

January 14, Thursday: Turn in your entries for the "Famous People with Special Needs" contest by 9am in the front office. Also Special Education professionals at Duncan Creek will be honored with a PTA breakfast and prizes from the local businesses at 7:15 am. Self-contained classes are able to have a celebration party either Thursday or Friday put on by the room moms and teacher.

January 15, Friday: "Healthy Living for Children with Special Needs" by Debbie Underwood, a former physical therapist and special needs parent presented at 10am -11:30am in the IEP room 1.126.

**** Friday watch the newscast to see who won the contest *****

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ENTER TO WIN the FAMOUS PEOPLE WITH SPECIAL NEEDS CONTEST - PRIZES!!

Every student at Duncan Creek can enter the contest and win a great prize for first, second and third place.

Here's how to play: FInd as many famous people with special needs and write them down on a sheet of paper. It must include the person's name, their disability and the reason they are famous. Turn in the entry with your full name, classroom, grade and phone number to the front office before 9am on Thursday, January 14. If you have questions please contact Candice Lange at 678-714-9447 or Candice@sophtware.com.

The three people who have the most famous people correctly will win a prize and receive it on the newscast Friday morning.

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Each day at Duncan Creek, two children with special needs will be broadcasting on the school news topics related to our Exceptional Children's Week. Teachers may incorporate special needs in their curriculum for the week. Children can play at recess pretending to have special needs to increase awareness. There will be a bulletin board in the main hallway with Special Olympics information and Famous People with Special Needs.

Bob and Diane Broadley, owners of Knight Bikes have a passion for children and adults with special needs as they have an adult son with autism and a granddaughter with down syndrome. They love watching people gain independence and have fun riding bikes which they have personally adapted to fit each person's needs.

Corey received an adapted bike from them many years ago when they were located in Florida. What a blessing for us to find them right around the corner as they moved up to Dacula, GA. They continue to work with us and help us as Corey grows and his needs change.

Today his bikes are still the most reasonable for adapted trikes and recumbent trikes. The prices start at $330 for a Miami Sun 12 " Trike. Adaptations can be made and the highest bike price he said is around $1500 with a bike that can lean back to assist getting on and off the bike and major components added. He personally works with each family to create the perfect fit. It really is neat to see all the pictures of bikes he has created and the faces of the children he has helped.

He would like to reach out to the community and give demonstrations or leave up to 3 bikes at a location for a month for kids and adults to use. This would be great for schools with therapy, therapy offices, camps, etc. He can do more in January and February but will come anytime you are interested.

Knight Bikes turn around time is only 3 days and he ships worldwide.

Contact Bob and Diane at Knight Bikes:
770-945-7770
3523 Braselton Hwy, Dacula, GA 30019
Mon - Friday 10am-7pm, Sat. 10-6 and Sunday 1-4
knightbikes@bellsouth.net
www.knightbikesandskateboards.com

This is Corey many years ago. He did not need too many adaptations but it has a chest strap below the t-shirt for seizure protection and the belt helped with balance. The newer trikes are even fancier.

The program is offered through St Joseph Hospital's Mercy Care Services.
It serves uninsured, homeless, and immigrant families. Some services
offered: general medical, dental, pediatric, and immunizations.

Picture ID and proof income, loss of income, etc. is required.

St. Joseph’s Hospital offers free pediatric service for children who do not
have heath coverage:

Every 2nd and 4th Tuesday of every month
8:30a.m. to 3p.m.
Mercy Care Clinic/Solidarity Village Mission
120 Northwood Drive- Suite 5-8

Additional information about locations and services can be found at
www.stjosephsatlanta.org.

Young Life Capernaum gives young people with mental and physical disabilities the chance to experience fun and adventure, to develop fulfilling friendships and to challenge their limits while building self-esteem through club, camp and other exciting activities. Young Life staff and volunteers model Christ’s unconditional love and acceptance as they walk alongside these young adults — filling their lives with love and support.

The camps are located all over the United States. Check out their website for details.
www.younglife.org/Capernaum

Dr. Dobyns at the University of Chicago Medical Center is a recognized expert on birth defects of the brain, especially lissencephaly, or smooth brain disorder. Together with David Ledbetter, PhD, former director of the University of Chicago Center for Medical Genetics, Dr. Dobyns discovered the gene that causes lissencephaly in Miller-Dieker Syndrome and in other cases of isolated lissencephaly. Over the years, he has made significant contributions to the understanding and classification of many different brain malformations. To learn more about him go to http://www.uchospitals.edu/physicians/william-dobyns.html.

On December 7, 2009, Dr. Dobyns emailed me back with this current information.

Lifespan:
For the classic, severe form of LIS, by age 10y about half are deceased and probably 10-20% live to age 20 years. The first 10 years are variable, sometimes hard and sometimes not. The 2nd decade gets much harder, and probably the next decade would be harder still but very few are still living. The oldest known patient with the severe classic form of LIS lived to about age 28-29 years. Children and adults with mild forms of lissencephaly may live much longer, and may even have a normal lifespan. In general, the less severe the developmental handicap and epilepsy, the longer the affected person is likely to live.

Ketogenic diet works depending on the individual child and their types of seizures.

Hyperbaric oxygen chamber therapy does not work for Lissencephaly - Pachygyria. Dr. Dobyns said hyperbaric is more effective for treating newly injured or dying tissue/nerves, and won't regenerate what is not there.

Finally, the GRADE of LIS and the TYPE of LIS are different. I used to classify LIS as “type 1” (isolated LIS, Miller-Dieker syndrome and related) or “type 2” (Walker-Warburg syndrome and related). Then other docs began writing about a “type 3” and then “type 4”. But the conditions they labeled as type 3 and 4 were basically not LIS at all. So I stopped using type 1 and 2 and use descriptors instead: type 1 is now “classic” LIS, and type 2 is “cobblestone” malformation or LIS.

I still use numbers for the severity or GRADE of LIS, at least for for kids with classic type of LIS. In this system, type 1 is the most severe, type 2 almost the same as type 1, and types 3 and 4 less severe. Types 5-6 are confusing, and refer to LIS with so-called band heterotopia.

Great Suggestion:

It is not unusual for parents to get most of the information exactly right, then mix up one or two phrases that end up making a huge difference. This is why Dr. Dobyns routinely allow parents to run tape recorders in clinic if they want.

Dr. Dobyn's research lab tested the TUBA1A gene (previous name TUBA3) with normal results. He also came across a couple “cousin” genes that he will try to get tested in another round. This is a genetic test for Lissencephaly and pachygyria.