Candice Lange

I envy Kevin. My brother, Kevin, thinks God lives under his bed. At least that's what I heard him say one night.

He was praying out loud in his dark bedroom, and I stopped to listen, 'Are you there, God?' he said. 'Where are you? Oh, I see. Under the bed....'

I giggled softly and tiptoed off to my own room. Kevin's unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.

He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he's 6-foot-2), there are few ways in which he is an adult.

He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Clause is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.

I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?

Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed.

The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.

He does not seem dissatisfied.
He lopes out to the bus every morning at 7:05, eager for a day of simple work.

He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day's laundry chores.

And Saturdays - oh, the bliss of Saturdays! That's the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. 'That one's goin' to Chi-car-go! ' Kevin shouts as he claps his hands.

His anticipation is so great he can hardly sleep on Friday nights.

And so goes his world of daily rituals and weekend field trips.

He doesn't know what it means to be discontent.

His life is simple.

He will never know the entanglements of wealth of power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.

His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it.

He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax.

He is not obsessed with his work or the work of others. His heart is pure.

He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue.

Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.

Not confined by intellectual reasoning, when he comes to Christ, he comes as a child. Kevin seems to know God - to really be friends with Him in a way that is difficult for an 'educated' person to grasp. God seems like his closest companion.

In my moments of doubt and frustrations with my Christianity, I envy the security Kevin has in his simple faith.

It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions.

It is then I realize that perhaps he is not the one with the handicap. I am. My obligations, my fear, my pride, my circumstances - they all become disabilities when I do not trust them to God's care.

Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.

And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I'll realize that God heard the simple prayers of a boy who believed that God lived under his bed.

Kevin won't be surprised at all!

- Author Unknown -

Please contact the below events to confirm times and dates.

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Free Museum Days and Special Events - Nationwide/GA
http://www.smithsonianmag.com/museumday/
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EP LiveOnline - Variety of Ongoing Seminars on Special Needs
A joint venture of Exceptional Parent Magazine and Vemics, Inc. is proud to announce a new series of interactive online seminars specifically for Military Medical Personnel, Civilian Health Care Professionals, Families and Caregivers.

CME Category 1 Accreditation for physicians only: Provided at no cost
to participants who qualify. To register, click http://www.epliveonline.org/military-prglist.html.
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Atlanta Quarterly Meeting of the National Council on Disability (NCD)

These events are free of charge and open to the public.

NCD is an independent federal agency making recommendations to the
President and Congress to enhance the quality of life for all Americans
with disabilities and their families. We believe it is vital that NCD
hears from disability communities around the country on what works and
what does not for people with disabilities. We are delighted to have the
opportunity to visit Atlanta and learn first hand about the experiences
of people with disabilities from Georgia. Please save the date and do
not miss this opportunity to meet NCD board members and staff and offer
your comments during the public comment sessions.

For more information, please contact NCD's
Director of Communications Mark S. Quigley at mquigley@ncd.gov or by
telephone at 202-272-2004 (V), (202) 272-2074 (TTY).

John R. Vaughn
Chairperson
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ART Contest
People with epilepsy can submit art to Expressions of Courage contest. This is a yearly ongoing contest. More information can be found at expressionsofcourage.com.
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Agape "Drop & Shop"
December, Saturday 10-2pm TBA
For more information call the Special Needs Ministry at 770-995-9055 ext. 777 or
email agape@northmetro.net.

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Special Time with Santa
Stonemill Church, 855 Northbrook Parkway, Suwanee, GA 30024

ASA-GGC seeks to create a safe and friendly atmosphere for children on the spectrum to visit with Santa without the pressure of long lines and crowded malls.
Advance reservations are recommended to give each child enough time to be comfortable with their Santa visit.

Visits with Santa
Photographer on site
Sensory Room
Music Time by Music Therapy Services of Greater Atlanta
Refreshments
Crafts
Exhibit Area

Please call the ASA-GGC office at 770-904-4474 for reservations. For more information, please visit the ASA-GGC web site at www.asaga.com. Exhibit space available.
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Special Needs Consignment Sale
December, Duluth, Georgia

We will be accepting ALL kinds of adaptive equipment (therapy equipment, standers, wheelchairs, walkers, etc.) and resources (books, dvd's etc.) for a HUGE 4-day only sale. This event allows the families (or those consigning the equipment) to keep 70% of the sale price of what they sell.

Please pass this link: www.theconsignmentsale.com along to your list, asking them to forward it. We need parents, therapists, doctors, and advocates to help us get the word out about this. Net proceeds will go to Georgia Special Sportsmen.

Thank you,
Jessica Handwork
jessica@theaislinggroup.com
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Greater Georgia Chapter of The Autism Society of America - annual conference

Focused on providing current resources and information on autism and related disorders. The conference will feature presentations and workshops by top autism professionals, leading researchers and experts on various subjects related to education, resources, and intervention across the lifespan.

The Attendees
Each year the conference is oriented toward families, educators and autism professionals who are looking to find new or better ways to care for the individuals with autism in their lives. Further, the conference is oriented toward individuals with autism who are looking for resources which can help them reach their maximum potential. Past conference attendees were from a diverse group, including parents, grandparents, individuals with autism, educators, autism professionals, and students interested in pursuing a career in fields related to autism.

Location: Stonemill Church, 855 Northbrook Parkway, Suwanee, GA 30024
*Stonemill Church offers a beautiful, new, state-of-the-art conference venue. ASA-GGC has no religious affiliation.

Cindy Pike, Executive Director, Autism Society of America - Greater Georgia
770-904-4474

Please visit the ASA-GGC web site at www.asaga.com for more information.
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Autism Walk
April
Sign up now to be a part of Spectrum's team this year.

The goal this year is to raise $2 million!
To learn more about Autism Speaks go to www.autismspeaks.org

To sign up for the Atlanta Spectrum team go to http://www.walknowforautism.org/georgia and click to register, then for a team, and choose the Atlanta Spectrum Team. Denise Turner will again be the awesome team captain.

This is a great way to participate with our community in raising autism awareness and funds for research and development of programs for those with autism. And, order a Spectrum t-shirt as soon as possible! Last year everyone loved our tshirts! And, it helps us identify our team members and represent Spectrum:) Claire Dees
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Walk for Autism

Help raise autism awareness and funds to benefit Autism Speaks and The Marcus Institute equally.

Register at www.autismwalk.org/georgia or 404-419-4120.
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The Annual Special Mr. & Miss Gwinnett County Pageant

For more information visit www.specialmrandmissgwinnettcounty.com.
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FREE Carnival For school children with special needs
For Gwinnett County schools

Sponsored by:
The Church of Jesus Christ of Latter-day Saints
1150 Cole Drive, Lilburn, GA

Located at the corner of Five Forks Trickum Road and Cole Drive, Next to Parkview High School

Petting Zoo Face Painting Pony Rides Mini Golf Moon Walk Fishing for Prizes
Clowns Relay Races Balloons Cupcake Walk And Many More Games
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Hebron Church Vacation Bible School with Special Needs Classes

202 Hebron Church Road
Dacula, GA 30019
Register: 770-962-3671

We will have three special needs classrooms for Bible school. They will be mild, moderate and medically fragile. However, a child can be in a mainstream class and if needed someone will be assigned to work with the child. The kids will enjoy moonwalks, a daily drama show, live music, stories, crafts and snacks.
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North Metro First Baptist Vacation Bible School
All children are welcome! Ages: turning 5 by September 1, 2007 through 5th grade.

To register for VBS online, go to www.northmetro.net
North Metro is located at 1026 Old Peachtree Rd NE, Lawrenceville, GA 30043.

For more information about the special needs ministry, call Mary Sams at 770-995-9055.

Also, the Second Monday of each month (unless otherwise specified), North Metro hosts Agape, a respite program for families of individuals with developmental disabilities. The Purpose of AGAPE is to provide rest and encouragement for families and a safe, Christian fellowship for individuals with special needs. Fun Christian fellowship for ages 5 through adult. Register by calling the Special Needs Ministry at 770-995-9055 ext. 777.
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Scholarship Pageant for “Dream House for Medically Fragile Children”

www.missamericandreampageant.com
Pageant Director, Jayne Madigan, 678-283-7178
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GAA Special Populations Cheerleading Camp

If you have any questions contact Joel Bagley 770/978-6060 Jkbagley1@cs.com

A Cheerleading Squad for Athletes with Special Needs!

Thunder All-Stars is now the home of a cheerleading squad for our friends with special needs. We are looking for both participants as well as volunteers to take part in this exciting journey.

· Co-ed squad for ages 8 and up
· No FEE! (there will be a charge for uniforms)
· Coached by a Recreational Therapist and Volunteers!

To register call Vicki at 770-977-9797
Please contact Angela Cremers (coach) if you have any further questions about this squad or if you are interested in private lessons/therapy. 404-502-8359
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PRYAA Special Needs INSPIRE Flag Football / Cheer Program

J. Derrick Hutchens
PRYAA INSPIRE Program Director
6555 Sugarloaf Parkway, Suite 307
PMB 123
Duluth, GA 30097
678-852-6793
specialneeds@pryaa.com
www.pryaa.com

Dr. Christopher Walsh and Dr. Bernard Chang are two of the three doctors that reviewed Corey's MRI for free and gave new diagnosis results. They are wonderful to work with and gave me information I really needed to know for Corey's care.


Christopher Walsh, MD, PhD
Chief, Genetics Department, Children's Hospital
Chief, Division of Neurogenetics at Beth Israel Deaconess Medical Center and Harvard Medical School.

Bernard Chang, MD
Neurologist at Beth Israel Deaconess Medical Center and Harvard Medical School.
(contacted through the Walsh Lab)

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.

NEWS FOR GWINNETT FAMILIES
Subscribe by sending an email to KAddams@aol.com with subscribe in the subject line.

Please contact the below events to confirm times and dates.

====================================================

DBSA - Depression and Bipolar Support Alliance Northeast Georgia
Support Groups:
Tuesdays 7:30 pm to 9:00 pm
Summit Ridge Hospital, Group Room 2
250 Scenic Highway, Lawrenceville, GA 30045

1st & 3rd Wednesday, 7:00 pm to 8:30 pm
Peachtree Corners Baptist Church
4480 Peachtree Corners Circle, Norcross, GA 30092

For more information contact Cheryl at 770/755-5038 or visit http://www.dbsanortheastga.org
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Spectrum, Gwinnett's Autism Support Group & Sibling Group & Grandparents Group
1st Thursday of every month from 7:00 pm-8:30 pm
Stonemill Church, 855 Northbrook Pkwy, Suwanee, GA 30024

Sibling Group Meeting for siblings ages 5-12 during Support Group meeting.

Grandparents Group Led by Deanna Luscre
Basic autism facts, (across the spectrum), the stages of grief parents of children with autism experience (based on a study by Bryna Siegal) and consider how grandparents might support their son or daughter during the process.

Spectrum, Gwinnett's Autism Support Group
Many come who have children of other diagnoses with autism-like behaviors.

To reserve free childcare (donations accepted) call Deanna Rouse at 678-377-8324.
For more info visit www.atl-spectrum.com.
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A.S.C.E.N.D.-ER, Inc.'s, (Autism Spectrum Community Efforts and New Directions)
1st Saturday of the month, 10am-noon FREE - New Speakers each month
Parkway Presbyterian Church, 5830 Bethelview Road, Cumming, GA.

For further information call 678-300-8687, e-mail info@ascend-er.com or visit http://www.ascend-er.com.
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North Metro Tourette Syndrome Support Group
3rd Tuesday of the month, 10 am

"Coffee and Conversation" is held at the Borders Cafe near the Mall of GA.
Contact Lydia Breer: lydiabreer@comcast.net or 678-482-9358.
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Spectrum Evening Get Togethers
3rd Tuesday of the month, 7:30pm - 9:00pm, call to confirm

This is a time to relax, share triumphs, and exchange ideas in an open discussion with other parents of autism-spectrum children. Reservations are not required. Meals, desserts, coffee, etc may be purchased for your enjoyment.

La Madeliene’s, 2200 Pleasant Hill Road, Duluth, GA
Contact Alexandra Cleary at 770-368-9037 or alexcleary@comcast.net.
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FOCUS: Duluth Share Group
4th Wednesday of the month, 6pm - 8pm

Starbucks - 1611 Satellite Blvd, Building C, Suite 16, Duluth - corner of Satellite Blvd. & Old Peachtree. Please RSVP to FOCUS at 770-234-9111, inquiry@focus-ga.org or http://www.focus-ga.org.
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FOCUS: South Gwinnett Share Group - Snellville
3rd Wednesday of the month, 9:30am

Ronald Reagan Park, Five Forks Trickum. Rain - meet at Chick-fil-A, Highway 124 (Scenic Hwy) in Snellville, across from Wal-Mart. To RSVP, call Jeanett Schnupp, 770-979-6342, jeaunettschnupp@netscape.net or FOCUS at inquiry@focus-ga.org or
http://www.focus-ga.org.
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FOCUS: Other Share Group

Contact FOCUS at 770-234-9111, inquiry@focus-ga.org or http://www.focus-ga.org.
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FACES Autism Support Group - Monroe, GA
3rd Thursday of each month, 7-8:30 p.m
Walton Career Academy
212 Bryant Road, Monroe, GA 30655
Free child care provided with reservation. Upcoming meetings and speakers at www.georgiafaces.info.
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FRIENDS CLUB OUTINGS
Sponsored by SPECTRUM Camps & Clubs Program
3rd Thursday of each month 6:30-8:30pm Sign up Now!

Kids enjoy a community outing with peers, a snack, and a social skills lesson led by teachers and para-professionals in the field of autism. Friends Club is designed for individuals who are able to independently participate in a group of 10-12 students per 2 adults throughout community settings. Parents are notified of each activity in advance and will drop off and pick up their child at the community location.

Cost: $40 for remainder of session (includes activity fees, snack, leaders)
Call to register for Session 2.
For further sessions, registration and questions email: scc2000@atlspectrum.org

The variant of lissencephaly or pachygyria that Corey has is mild and does not relate to most of the lissencephaly information listed on the internet and that is why we have this website to let other parents in our situation know:

The mild variety of pachygyria has a full life expectancy.

The lissencephaly sites we found state the life expectancy is up to 20 years of age.
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I ran across this site with an actual picture of a pachygyria brain. It states it is fatal but I was told Corey's variant is not. A total of 13 brain malformations are included.
http://runzwithscissors.net/gallery/brains/pachygyria

http://www.neurology.org/cgi/content/abstract/01.wnl.0000183747.05269.2dv1

For description and resources:
http://www.memorialhermann.org/library/healthguide/en-us/illnessconditions/topic.asp?hwid=nord454

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Brain scans of Lissencephaly and information visit:
http://www.med.uc.edu/neurorad/webpage/cna.html
Discussion:
Lissencephaly is the most severe of the migrational anomalies. Affected individuals are profoundly mentally retarded and usually have severe seizure disorders. A global migrational abnormality is postulated, occurring between 11-26 weeks. The cortex is abnormally thickened and sulcation largely absent, with 2-4 instead of the normal 6 cell layers of cortex. Colpocephaly is usually present.
Types:
I-Miller-Deiker- assd with 17p-
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FireFly Health is devoted to serving people living with rare diseases. It is an online community and will match your medical input to the database for your unique group.

The Pachygyria community has 45 members as of 3/18/09.

http://www.fireflyhealth.org

In 2006, Corey was diagnosed with paracentral pachygyria, a mild form of Lissencephaly through research studies done by Dr. Dobyns at the University of Chicago and Dr. Walsh and Dr. Chang at the Walsh Laboratory using his MRI film taken in 2005 after a series of seizures.

We knew Corey had a brain malformation from his first MRI done in 2001. At that time the doctor did not show us the MRI and said Corey had mild hypotonic Cerebral Palsy and by the time he was 8 no one would know the difference.

Several years later a different doctor showed us the MRI for the first time and explained that Corey had "fewer folds" and that it could lead to some form of mental retardation but was not sure to what degree. We were concerned with treating his seizures and held onto the hope from the first doctor's outlook. Corey did not seem like a child with mental delays only speech and motor delays. Other therapists said he was smart and those who took the time to listen to him.

In 2005 when the second MRI came back another doctor said nothing had changed from the first one but the words had changed and described "many folds". It also had the description of Perisylvian Syndrome, which was new to us. Our current doctor had not seen Corey's brain malformation before and said it was rare.

A “multisensory activity center” is opening in Atlanta March 2009.

www.sensationstherafun.com for more information.

Location: 1704 Chantilly Drive, Atlanta, GA 30324 (Cheshire Bridge at I-85)

Sensations TheraFun has all of the finest in innovative activities with the kids needs in mind:

Zip Line
Climbing Wall
Mini Trampolines
Monkey Bars
Climbing Rope
Swinging Rings
Ball Pits
Rope Ladders
Swings
Exercise Mats
Bikes with and without Training Wheels
Balance Beams
And Much More!
A large art room for:

Painting
Drawing
Crafts
Writing
And More!

A full size kitchen is available for group cooking classes and camps.