SSM Fall 2010 by Something Special Magazine

Something Special A Magazine For Parents Raising Children With Special Needs

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September October November 2010

Taking Care of You

Navigating Autism

Through Music Theraphy

Beauty & Fitness Tips

The

Amazing,

Inspirational

Jennifer McGee

Special Food:

Quick Meal Options for Back to School PLUS Gluten & Caisen Free Meals

FREE Publication

SPECIAL ADVICE

MOM TO MOM

PARENTS PUTTING THE PARTNERSHIP IN THEIR REALTIONSHIP

SPECIAL FOOD

SIMPLE & SPECIAL MEALS FOR FAMILIES

SPECIAL FEATURES

DO YOU BELIVE IN ADHD? SPECIAL BATTLES

SPECIAL BATTLES & RESOURCES

NAVIGATING AUTISM

PARENT TO PARENT

MISCONCEPTIONS OF TOURETTE SYNDROME

SPECIAL WORKOUTS FOR CARETAKERS

SPECIAL HOMES & GARDENS

ABILITIES UNLIMITED

ALL ASPERGERS

OUR SPECIAL SIBLINGS

WILL HALL STORY

FAST FOOD FOR FALL

ASK THE THERAPIST

THE UPSIDE OF DOWNS

JENNIFER MCGEE

HOMES & GARDENS

SPECIAL PLACES

SPECIAL PLACES TO GO & SEE

SPECIAL CARE OF YOU

HAIRSTYLES

Inside the Next Edition: Meet Some REALLY Sweet Kids- Living With Juvenile Diabetes Help! My Kid has Dyslexia What A Special Needs Alliance Attorney Can Do For You And Much, Much more!

Keep us in print, tell your friends to read and to advertise! Remember, we need stuff too! Patronize those businesses that believe in Something Special™. Next Issue Out December 1st! Advertise With Us, Deadline is October 17th.

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Something Special™ magazine is published quarterly per calendar year by SSM Publishing, LLC, P.O. Box 16193 Savannah, GA 31416. The publication is available free of charge at over fifty areas in Savannah and the surrounding counties, such as Effingham, Bryan, Bulloch and Liberty as well as some places in Atlanta. Something Special Magazine welcomes letters, photos, articles or art work, but is not responsible for the return of unsolicited materials. Any unsolicited material will be treated as non-confidential and non-proprietary, and becomes the sole property of Something Special Magazine and may be used for any purpose, including the website. Something Special Magazine does not knowingly accept incorrect, false, or misleading advertising or editorial content, nor does SSM Publishing, LLC assume the responsibility should such advertising or editorial content appear in the publication or on the website. The editorial content of Something Special Magazine is written by professionals in their field and parents, and is not necessarily the opinions of the publisher, SSM Publishing, LLC, who take NO responsibility for the opinions and the advice given. Something Special reserves the right to edit all letters to the editor for clarity and space and determine suitability of all materials to it.

Letter Creator T

from the

here is something to be said about the fall. The air here isn’t necessarily crisper or cooler, but the temperature is a little lower, it isn’t as humid, AND last but not least, school is back in session. I love having my children at home, BUT there is something to be said about having two months of “Saturdays”. For a child on the autistic spectrum, as in our case, they do NOT do so well without a routine. In this issue, you will meet a remarkable working woman who is the parent to four children, three of whom have special needs and are on the autistic spectrum. She knows first hand about the importance of a “routine” and in my opinion, is a champion of organization and inspiration. Inspiration is what drives all of us to be better people, to be better parents. Inspiration and information is the mission of Something Special Magazine. Our article on Will Hall and his parents is nothing short of an inspiration. If you have a child with Aspergers, this is your issue! As you “organize” yourself and get ready for the school year, let us remember to take care of the person within you, the parent, by exercising (see our Walking Workout), by nurturing your relationship with your spouse, and by going places that not only welcomes you but the whole family (see our section, “Special Places to Go”). I encourage you to keep the emails and letters coming- we know you are out there, and we WANT to hear from all of you. Your letters and posts on our FACEBOOK page are what drive me, THEY inspire me, and YOU remind me that there are so many parents out there that are really something special. Very Truly Yours,

Katrina Laygo

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Staff Creator/ Editor Katrina Laygo Art Director/ Ad Layout Nicole Pritchard Website Christos Parrish Web Romina Laygo CHIEF WRITER: AVIS COLEMAN Contributing Writers Dr. Lynn Adams, Dr. Kevin Winders, Catherine Vouk, Katrina Laygo, Tracey Chance, Genevieve Routon, Dana Lee Smith, Hayden Mears, Wendy Campbell, LeAnne Geoghagan, Dennis Debbaudt, Jennifer McGee, Michelle McGee, Rhonda Langford, Eva Elmer, Jennifer Faulk, Amy Holton Proof Editor Winnie Walsh Fitness Editor Carrie Smith Food Editors Carol Lanser, Heidi Corse, Lauren Robesky

As parents of special needs children know, a test score that puts your child in a “normal” or “near normal” can make you feel on top of the world. Our family was happy to find out my son Stephen Coleman tested in the low normal for receptive and expressive language for his age, 28-months, two 1/2 months after scoring extremely low (in the 3rd-5th percentile) on a Bayley test done to measure how well he compared with a 24-month year old. I believe that along with everyone pitching in to help him along with his speech, at daycare, with family and in his bimonthly speech therapy sessions, CE was central to his advances in cognition and expressive/receptive language. When he started Conductive Education in January 2010, Stephen had very few words and by May he tested in the low normal range in speech for his age! The conductors (as they are called, not therapists) worked with him to help him learn how to pay attention; understand concepts like big and small, same and different; learn to point to objects and identify them and problem solve; expand vocabulary, learning colors, parts of the body etc. If he hadn’t been in the Conductive Education program, I truly believe he would have done much worse. Because of his physical delays (Stephen cannot get into a sitting position, walk or crawl yet) he cannot fully experience and learn from the world around him and we caregivers, me included, may have a tendency to lower our expectations of what he is capable of and not push him to reach his full potential like we would any typically developing little boy.

Photographers Kristina Laygo, Gabby Laygo Advertising Katrina Laygo, Gia French Print Media Kit LaTrelle Ferelle

Distribution The entire Laygo Family- especially Josh Laygo Website Address WWW.SOMETHINGSPECIALMAGAZINE.COM 4

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Conductive Education has made such a difference in our lives and if there are parents out there who are interested in exploring its possibilities...Stephen works with the husband and wife team Erika and Peter Bartos. Their school, International Institute of Conductive Education, is located in Bluffton. They will start their classes again in September. For more information, contact them at www.iice-mn.org.

MOM

Advice for busy moms from busy moms.

A Child With Hypotonic Cerebral Palsy

Chief Photographer Emmaline Routon

Legal Chris Steinmetz, Melissa K. Dagodag

2 Organizing

MOM

Update on Stephen’s Story

Special Advice

for the

School Year

As a mother of four children, organization is essential for daily life. Things like laying out the school clothes the night before and having a menu for the week just helps things flow a little easier. Having three children with Autism, organization is crucial in helping my children to be as independent as possible which helps to improve their quality of life. Throughout their lives my goal has always been to promote independence as much as possible, no matter what level they were at. Sometimes it would be quicker or easier for me to do things for them, however, if I did this all the time then my children would learn to be helpless and depend on me versus having the satisfaction and reward of learning to do things on their own. Organization can help build independence. The children’s’ dresser drawers are labeled with a picture and word of the clothing items. I originally did this so they could know where their clothes were and pick out what they wanted to wear. Now it is used so they learn to put their own folded laundry away. One of the most important tools I have used is a checklist. There were certain times of the day when I found myself asking them to do the same things over and over again. I was getting very tired of “nagging” them to do things. Then I realized that I had not taught them what was expected of them so I made a checklist. After school was an unstructured time when I was always nagging them to do things that needed to be done before dinner and baths. The checklist taught them that these were the things I expected of them every day after school. I expected all book bags to be hung up by the front door. I expected them to pick up any toys or clothes in the living room and take them to their rooms. I expected them to have a snack. I expected them to be ready for the speech therapist when she came to the house on Tuesdays and Thursdays. If all these things were done they could play in the playroom until dinner time. It sounds simple enough. However, before the checklist, I was constantly asking “Where are your book bags? Pick up your clothes! Take your toys to the playroom!” I did this every day. Now they come home from school and do the items on their checklist, in the order on it. After completing each task they check it off. They know what is expected and are proud to show me when the list is completed! For my twin boys who are higher functioning

By: Jennifer McGee

the list is typed out in sentences and there may be 5-7 things on the list. They actually have a list for morning routine, afterschool routine, and getting ready for bed routine. When implementing a checklist, I recommend targeting one checklist for the most difficult time of the day. For my oldest daughter, we use only one checklist for her most difficult time of the day. She has 3-5 things on her list. I use both pictures and written words for her checklist. It can be modified based on reading skill and attention level. As she masters the items on her list, I can increase it or add a different list addressing our next goal. Checklists are great organizational and visual tools that I use to promote independence and help my children become responsible for their own behavior. Independence and responsibility are more than tools for an organized room or home, they are life skills that every human being should have, even those, with some special needs. Mom to Mom, it worked for me!

Do you have a great idea that works for your family and your special needs child? We would love to hear about it. Email your Mom2Mom advice to info@somethingspecialmagazine.com Your suggestion could be published in our next issue. Be sure to include a contact number and contact email. Thanks, and we will be looking for some advice!

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Please Join Us for the

5 Annual th

Buddy Walk Fall Festival &

Saturday, October 23, 2010 Forsyth Park - Downtown Savannah Event includes rides, food, games and live entertainment for the entire family!

“

We are all different -Thats' what makes us the same!

”

Sponsored by the Lowcountry Down Syndrome Society For more information and to register online go to ldssga.org

How to put the Partnership in our Relationship. The intent of this article is to give some pointers to those of you struggling to find happiness and contentment with your husband or wife within the context of a family that has a “special needs” member. Often my husband, Joe, and I get asked how we have managed to survive forty years of marriage! The answer is that it is not easy when you are raising family…and in our case, we were raising two sons, one of whom has Asperger’s Syndrome We are talking about turning back the clock over thirty years. At that time, all we knew was that we had a son who had a different way of looking at things, and, at times was extremely willful. In addition we observed that he had some problems in communicating, particularly regarding social skills. Sometimes what we thought we had said and how he perceived it was at odds. The term “Aspergers” was not part of anyone’s vocabulary at the time. It was as yet unnamed. Our children came along as follows: Jake was our first child. He was such a beautiful baby, everyone commented on his deep brown eyes and curly brown hair. He almost always awoke from a nap crying. I was a bit disturbed by this, because I thought most children woke up in a happy frame of mind. He also had a defiant nature. When he was perhaps a year and a half, he knocked over a lamp from the end table in the living room. After chastizing him with a firm”no”, he gave me that defiant look and proceeded to knock the lamp over again. I recall him being very upset about the way I had cut his sandwich. It was imperfect in some way ; very upsetting to him. When Jake was twenty two months old his little brother , Matt, was born. These two boys became inseparable as soon as Matt could walk. They played together all the time. Matt had his own way of looking at the world, but it was nothing to cause alarm. He was rather hyperactive. At any rate, the two boys played together and had the same group of friends in the neighborhood. This was the good part of having them close in age. As Jake progressed through elementary school, there were some concerns about his lack of social skills, and willfulness. We knew he was intelligent, but we also knew that he was “wired” differently. I recall a visit to the Pediatrician when Jake was about two years old. His words were “You have an extremely willful child. You are in for quite a ride. Good luck!” Gee, thanks! Any suggestions, Doc? Is there a remedy to this? Apparently not. As the boys were growing up, Joe and I had our own set of problems. We were drifting apart. Joe lost his job, there were economic worries. We had worried about Jake. Stress from job loss added to tension in the home. Joe and I had no time together. Our focus was on the boys…whoa! Red flag! The old adage “never let the sun set on your anger” is so true. We decided to get some marriage counseling. It taught us some useful conflict resolution skills. Write your feelings down on paper. It is an excellent way to confront what is bothering you. Write a note, when you are upset, leaving it for your spouse to read at his or her leisure. The letter should contain YOUR feelings, YOUR hurts, YOUR longings, YOUR dreams. Stay away from the “blame game”. Negative comments only foster resentment. Forgiveness is a biggie! Move beyond your hurt feelings. Apologize for things you have done or said to harm your spouse. Remember that it is so easy to get bogged down with life’s problems. Don’t forget

Special Advice

Secrets for a Resilient

Marriage

By: Barb Schultz (names were changed to protect the innocent) that when you are married you became “We”. “Me, myself, and I” should now take a back seat. It all seemed so simple on your wedding day, but the challenge is to make it work as you face adversity… together. We were aware during the 1980’s and 1990’s of so many couples seeking divorces. Did we want to be one of those statistics? We were both tenacious enough to want to rekindle the flame. Our family depended upon it! Make time for just the two of you as a couple. If you can do it, send the children to camp for a week in the summer. Make sure that you go on a date now and then. It does not have to be anything expensive. There are so many things you can do: going for a walk, going out for a coffee, going to see a movie. If you save your money, you can plan a special weekend away. It takes planning. Find someone you trust to look after the children. It can be done. Joe and I were both raised in church going families. Our spiritual life became neglected, as well. We both got down on our knees and asked for God’s guidance. We belonged to a church and were very faithful at attending services on Sunday mornings. Attending a weekend “Marriage Encounter” sponsored by a church was a very special event. It revitalized us and enabled us to learn some helpful tools of communication. We focused on renewing our commitment. Giving up should not be an option… there was a reason you got together initially. Make your relationship as a couple a priority. Your children will be happier about that as well. Our sons are grown now. Jake and Matt have both come through some difficult times; All four of us have relied on the strength of our family unit to bolster one another. Jake and Matt both have some outstanding talents, some positive work experiences. The outlook is more optimistic nowadays. As for Joe and I, we have grown too! Every day we are together is beautiful. He is the most precious person in my life. Our love has grown by leaps and bounds. One more thing…we are crazy about each other, and apparently it shows. This article is the result of one such person who noticed the sparkle in our eyes!

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Do you have the whole picture? the

Ask

Therapist By: Jaime Patillo

As your child begins a new school year, it is important that you and school professionals have the whole-picture regarding your child’s academic needs and functioning abilities. Neuropsychological evaluations put the pieces together by assessing your child’s behavior, skills and abilities with emphasis on the impact of brain functioning. Dr. Curry, a specialist in neuropsychological evaluation, offers evening and weekend testing appointments in her Pooler office. Q: How do neuropychological evaluations differ from other evaluations? A: In my work with children and adolescents, I examine the whole person—their social and emotional functioning, cognitive functioning, academic skills, language abilities, sensory-motor skills and executive functioning. I also review history and observe interactions between the client and their family before and during the assessment. Additionally, I gather information from teachers, health professionals and others who work with the child. Most importantly, the neuropsychological evaluation helps guide treatment planning by offering specific recommendations and interventions for the development of home, school and day-to-day skills. Seeing this whole picture allows you to help your child develop into their whole self. While working at Lindamood-Bell Learning Processes during her undergraduate years, Dr. Curry became passionate about helping children and their parents understand their weaknesses and strengths as they relate to academics. Dr. Curry completed her Doctoral Degree in Clinical Psychology with specializations in Clinical Neuropsychology and School Psychology at The Institute for Graduate Clinical Psychology at Widener University in Chester, PA. Before relocating to the Southeast, she completed a two-year postdoctoral fellowship in Clinical Neuropsychology at Lenox Hill Hospital’s Center for Attention and Learning Disorders.

Schedule early for your back to school assessments, call 912.748.6463 THE

MINDSPRING CENTER

Ranicki chiRopRactic’s Creating Wellness Center

Together, we offer Savannah’s most comprehensive array of Special Needs and Wellness services.

1 Begin: 2 Form:

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Special Advice Yoga Therapy Downward Facing Dog is good for increasing strength and stability in the upper body. It stretches the muscles on the back of the legs and can be calming to the central nervous system. Children are said to be born yogis. Most children naturally move in and out of positions that a trained eye would recognize as yoga poses. These poses are often mirrored in the positions that children naturally assume as they develop and learn to control their bodies. The practice of yoga has many benefits for kids of all ages. But for children with special needs it can be a valuable addition to occupational or physical therapy. It is also useful as a maintenance program once a child is no longer receiving ongoing therapy. In a targeted yoga practice, specific poses are chosen to address goals individual to each child. These may include increasing strength, range of motion, coordination, motor planning, balance and bilateral integration. The way in which the poses are performed influences the outcome as well. Poses that are held for a longer period of time help improve body awareness and increases strength and endurance. Moving through a sequence of poses promotes improved motor planning, coordination and sequencing. Kids learn to concentrate and focus while balancing in poses such as “tree” or “airplane”. Specific breathing techniques are used to manage stress, release tension, and calm the nervous system. As children with special needs gain increased control over their bodies- selfawareness, self-esteem, and self-acceptance become the fruits that can help them better cope with the challenges they may face. Individual yoga sessions allow for greater personalizationand focus on specific goals. Group classes, however, can be a safe space in which to have fun and build a sense of community with other kids facing similar challenges.

Downward Facing Dog Try this with your child

Start on hands and knees. Tuck the toes under and lift the knees. Send your hips up and back until your body forms and upside down “V.”

}

3 Explore:

Can you wag your tail like a dog?

(Brings a sense of fun and helps with engagement)

Can you bark like a dog?

(Works on counting but also is a way to get your child to hold the pose a little longer)

Can bark 3 times, 5 times, 10 times? (Facilitates imitation of animal sounds)

Can you lift 1 leg up?

(Increases the challenge of the pose)

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Special Advice

Our

Special

Meet the brothers and sisters whose special bond have made them experts on how to relate to a sibling that has special needs.

Siblings

Special Battles

Special Battles & Special

As most of us know, when parents find out that they have a child with special needs, we go from regular parent, to advocate parent. That is a good thing, the problem is that the TIME involved in becoming an advocate is limited… because you have a special needs child. In an effort to cut back on your time, we tried to research a few sites that might be beneficial for you and help you, get the HELP you need to improve your child’s quality of life. Here is what we have found and our list of special resources.

My name is Janson and I am 10. Jack is my brother, who we adopted. He’s 3, has cerebral palsy, and a feeding tube. His cerebral palsy means that he can’t walk very well so he rides in a wheelchair. He doesn’t eat much so he has PediaSure through a feeding tube at night. His lungs are not very healthy because he was born too early and because he aspirates whatever he eats. So, we have to be really careful about germs. To keep him healthy, I do home school, which I really like. He also can’t talk very well. We spend a lot of time at the doctor and at therapies. It’s nice to have him for a brother because he likes to play with me. He really likes plastic animals and people. He isn’t as nice when he hits me. He only hits because he is frustrated when we don’t understand him, so we all learned sign language. Even though he is not perfect, he is the best brother ever!

-Janson

Right before my sixth birthday, I received an early birthday present: a baby brother. My parents told me that he had Down Syndrome, and that life may be a little different for us. I wasn’t exactly sure what that meant, because he was my first and only sibling. But he seemed like a normal baby; it seemed like we had a normal sibling relationship. I remember when my mom explained his disability in more detail. She said he may have trouble learning basic things, like walking and reading. To me, this was no big deal. I was his older sister, and I would teach him to read. It may have taken more time for him to learn than other children, but he succeeded. Anything he has put his mind to he has accomplished; his disability has been a minor setback in his successes. We have a typical sibling relationship; Michael acts like a younger brother and likes to tease. Luckily, I’m just as good at teasing back. At times we drive each other crazy, but when it comes down to it, he’s my brother, blonde hair, music lover, Down Syndrome and all, and I love him just as much as he loves me. People often ask what it’s like having a sibling with a disability. It just is what it is, I say. We don’t know any other way to be. He’s just Michael.

-Jessica

10 Something Special www.somethingspecialmagazine.com

Resources

What's Inside:

Tips to help you improve your child's quality of life.

Before School Age, birth to 3 years- Babies Can’t Wait, and the website is www.health.state.ga.us/programs/bcw. The phone number for Bryan, Camden, Chatham, Effingham, Glynn, Liberty, Long and McIntosh counties is 912.691.6888 or toll free 877.808.3689. For Appling, Atkinson, Bacon,Brantley, Bulloch, Candler, Charlton, Clinch, Coffee, Evans, Jeff Davis, Pierce, Tattnall, Toombs, Ware and Wayne counties, call 912.284.2552 or toll free 800.429.6307. Babies Can’t Wait helps families who qualify (that does NOT mean financially- if the child has a delay deemed by Babies Can’t Wait, they qualify), REGARDLESS of income of the family. You do not need a referral, just tell them you suspect a significant delay. My son did not talk after 18 months old at all- that is a significant speech delay. Sure, there are late bloomers, but there is no harm in calling and having them come out and evaluate, because it could be something much worse, as in our case. After three years of age, if the delays are still there, children may attend a PSI screening (preschool intervention screening). Do you need a referral to attend? NO! They will tell you if you don’t qualify, so if you suspect a delay, go to the screening. If your child has a delay in one or more areas of sight, hearing, speech, at play or in motion, PLEASE go- early intervention is KEY to helping your child. If you are not sure where to go, call 800.827.5239, your local Board of Education or locally in Chatham County Georgia, 912.395.5583.

Education: The best for Georgia is www.doe.k12.ga.us/ This particular website gives you information on a state level for special education. For specifics on your exceptional child’s disability, the site is public.doe.k12.ga.us/ci_exceptional.aspx.

Do you have a brother or sister that you would like to write about? Please tell us all about them, email us at Katrina@somethingspecialmagazine.com and put O.S.S. in the subject or mail us at P.O. Box 16193 Savannah, GA 31416. You could be published in one of our future issues. Don’t forget to include your contact information.

Significant Developmental Delay : Defined by State Standards The term significant developmental delay refers to a delay in a child’s development in adaptive behavior, Photo courtesy of picasaweb.google.com

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Special Battles cognition, communication, motor development or emotional development to the extent that, if not provided with special intervention, the delay may adversely affect a child’s educational performance in age-appropriate activities. The term does not apply to children who are experiencing a slight or temporary lag in one or more areas of development, or a delay which is primarily due to environmental, cultural, or economic disadvantage or lack of experience in age appropriate activities. The SDD eligibility may be used for children from ages three through nine (the end of the school year in which the child turns nine). [See 34 C.F.R. § 300.8(b)] One program in particular, is below. It is recommended that parents bookmark it, as it is new and updated fairly often. The bookmark would be public.doe.k12.ga.us/sb10.aspx Read the website CAREFULLY, and if you decide this is the route you want to go, I would advise reminding you that if the approved private school is a middle school and goes from Grades 6-8, you are supposed to stay there until grade 8. If you don’t like the results, you can go back to public school, but you might be waiting on services through the public school system and may have to be reevaluated for an IEP, which is time consuming. If your child is visually impaired or deaf, there are three state schools for that as well.

Georgia Special Needs Scholarship Program: This Georgia Special Needs Scholarship (GSNS)

Program web pagecontains all information regarding the program. It is recommended that parents bookmark it and check it often. In May 2010 there will be a calculator posted on the web page which will enable a parent to determine a child's scholarship amount. The calculator will only work if a student is eligible for the program. Scholarship amounts for students generally range from $2,500 to $13,500 with an average amount of about $6,000. There is no application process for the GSNS Program. A student must meet the following eligibility requirements if a parent is interested in having a child participate in the Georgia Special Needs Scholarship Program during the 2010 - 2011 school year for the first time: Student Eligibility Criteria 1 - The student’s parent(s) currently resides within Georgia and has been a Georgia resident for at least one year. Student Eligibility Criteria 2 - The student has spent the entire immediate prior school year in attendance at a Georgia public school in grades K - 12. Student Eligibility Criteria 3 - Student was enrolled and reported by a public school district(s) for funding purposes during the preceding October and March full-time equivalent (FTE) program counts in accordance with O.C.G.A. § 20-2-160. Student Eligibility Criteria 4 - The student was served during the immediate prior school year under an Individualized Education Program (IEP) written by the public school in accordance with federal and state laws and regulations. Student Eligibility Criteria 5 - The student was reported by a school district for funding purposes during the preceding October 2009 or March 2010 FTE program counts. Student Eligibility Criteria 6 - The student was reported 12 Something Special www.somethingspecialmagazine.com

Special Battles

by a school district in either the October 2009 or March 2010 FTE program counts or in student record as a student receiving special education services. There are no exceptions to the eligibility criteria. If a student meets the eligibility criteria for the GSNS Program; a parent has the right to request a transfer from a student’s current public school to: Another public school within their district of residence; Another public school district outside their district of residence One of the three state schools for the blind or deaf; or A private school authorized to participate in the GSNS Program. Refer to the Understanding the Program document in the For Parents box on the right side of the web page for more details about the GSNS Program.

Down Syndrome: The Low Country Down Syndrome Society, Chatham and Effingham Counties- Contact Candy and John Bogardus on Facebook through the Low Country Down Syndrome Society, or by email at jcbogardus@planters.net. Autism/ Aspergers Syndrome:

Autism Research Institute ,www.autism.com. A non-profit, informative site. Worth a look. Autism Society of America, www.autismsociety.org. This site exists to improve the lives of all affected by autism by increasing awareness and advocating for appropriate services. www.autismriskmanagement.com Training first responders on how to protect our autistic kids. Several articles are located on the side bar that address keeping your kids safe and so many others.

Parent to Parent

One special resource you need to know as a Georgia Parent of a child with special needs is Parent to Parent. Parents helping parents. Meeting parents where they are. The mission of Parent to Parent of Georgia is to serve families and parents of youth and children with disabilities from birth to 26.

If you call one of our coordinators, you will immediately be struck by the uniqueness of the services you will receive. Most of our staff have children or loved ones with disabilities, and we recognize that parents have the most comprehensive and accurate information on their children - they are the experts. And that makes us special in a world that sometimes moves too fast to acknowledge, leverage, and value the role of parents and families working on behalf of each other. We are partially funded through grants by the US Department of Education and Health and Human Services and all of our services are free to Georgians. And yet, even in these struggling economic times, not enough families are aware of our efforts in Georgia to reach out and serve.We offer a variety of support services to Georgia Families of children with disabilities:

Supporting Parents

By: Jennifer Faulk

Services in Spanish

Take advantage of our many Spanish services option as well!

We will help you connect deeper into your community and at the same time make you part of ours. You can volunteer to become a supporting parent, providing emotional or expert advice to another parent in need. You can start or join a support group or Navigator Team and enhance the lives of other children and youth in your community, while enhancing you life as well. That is what we are all about. Today, right now – go to a computer and click on www.p2pga.org or Monday – Friday call us. 1-800-229-2038.

Talk, one-on-one, to another parent who has walked in your shoes. We can find parents that are a good match for you to speak with. Each year over 5,000 families contact one of our support coordinators.

Download and READ: The Low Country Aspergers Support Group on FACEBOOK. Find out when meeting times are, and go! Participate in events sponsored by them, get involved with other parents going through the same thing in your area. The more parents you meet, the more ideas you get for helping both your child- and yourself.

Special Needs Data base

Autism Support Group- Bryan County- This wonderful group is headed by Jeanette Orr (find her on FACEBOOK), and they meet the second Tuesday of the month at St. Annes Catholic Church (the social hall) from 6:30pm- 8pm. Childcare is provided. Visit the website at www.meetup.com/Autism-SupportCorner. Connect with parents going through what you ARE going through. This group works with the community and the school system for a larger understanding of autism. Our best teachers are other parents. Last but certainly not least…Parent to Parent- The Most Comprehensive site for ANY parent of a special needs child. See article following this written by Jennifer Faulk.

Tour a graphical site walking you through what you need to know as you navigate educational and community services. Parent-Led Navigator Teams – Learn about leadership and community opportunities for your family. Find out if there is a Navigator Team in your area – if not, start one!

Go to our website (www.p2pga.org) and click on the special needs data base to find information on resources available in your area. We are the Babies Can’t Wait Central Directory and we have over 5,100 resources listed in the database.

Roadmap to Services

Free Training Courses

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Special Special Foods

Special Foods

Gluten &Caisen Free Meals

Food

ur food section is all about choices. If you currently want to try the Gluten Free /Caisen (a protein found in dairy) Free diet, we have some recipes for you. It is a different way of cooking and eating, and although it isn’t medically founded, it is “mommy founded”, meaning, a lot of moms with autistic children say they have positive results when their child eats meals that are gluten and caisen free. There isn’t a downside to trying it, except that it can be costly (gluten free flour isn’t cheap, but doable), and it can be frustrating because it is kind like learning a new language, it just takes a little learning time. We have learned anyone can cook GF/CF, just make some adjustments to most recipes. For instance use rice milk instead of milk (if it is a dessert, you use fruit juice as well), Earth’s Balance Vegan Butter instead of real butter or margarine, and Namaste flour in the place of real flour. Potato chips (be sure) are usually gluten free, Fritos corn chips, and of course all fruit and veggies are big winners! Van’s Waffles and French Toast Sticks for a quick breakfast are a big hit at our house, and we use REAL maple syrup. Maple syrup that you find on the grocery store shelf with common names is FULL of high fructose corn syrup. AVOID HIGH FRUCTOSE CORN SYRUP like the devil. Real maple syrup is expensive BUT it is thin, and you actually use less of it, so cost wise, it might run about the same in the long run. You can get a BIG jug of REAL maple syrup believe it or not at local Wholesale Warehouses (like Sam’s, Cosco and so on) and it is cheaper there, most of the time. We also suggest getting meats that are NITRITE/NITRATE free, like Boars head (make sure you ask which ones are gluten free and nitrite free), Applegate Farms (expensive- but very good hotdogs). For snack options, try Glutino pretzels, K-toos cookies, and the GFCF granola bars listed in this section- yummy! For dinner options, your kid can still have chicken nuggets, but YOU need to make them. Check out the chicken nugget recipe, your kids will never know it isn’t their favorite chain restaurant. We also have a few recipes that are for those children NOT on a GFCF diet, and we thought that it would be fun to have the kids help you make it. Of course, you will supervise them, as it is not wise to have kids cooking in the kitchen without watchful eyes!

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By: Heidi Corse

Think eating healthy is hard to do?

Well not only are the following recipes easy, but they are delicious. Try these simple recipes your whole family is sure to enjoy.

GFCF Breading for Chicken Strips and Fish Sticks Ingredients: 1 beaten egg 1 1/2 cups pecans 1/2 cup almonds 1 cup rice checks 1/2 cup GFCF premade bread crumbs (or can make own out of GFCF bread) 2 teaspoons Lawrys Seasoning 1 teaspoon garlic powder 1 teaspoon salt 1/2 teaspoon pepper

What's Inside:

Fast receipes that will fit your onthe-go lifestyle.

Toast pecans on cookie sheet at 350 for about 10 minutes or until slightly golden. Cool completely. Place all of the above in a food processor and pulse until all is finely ground. Dip desired sized pieces of chicken or fish in beaten egg and dredge in above mixture. Bake on sprayed cookie sheet at 350 for approximately 15 minutes, until meat is cooked through, but it depends on the size of meat pieces or you can fry in a nonstick pan in a small amount of olive oil over medium high heat until cooked through and golden on each side. (this results in a crispier, tastier item) I make up a large batch at one time and then freeze. Nuggets can be either reheated in the microwave or in the toaster oven.

Photo: Kristina Laygo Garden at Goodwill

Let Us Know... If you have a recipe that you would like to share that is nutritious, please mail it to P.O. Box 16193 Savannah, Georgia 31416. We are looking for GFCF meals and regular, kid friendly meals. You could be published in one of our issues! Include a picture too and contact information. Photo: Kristina Laygo

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Special Foods GFCF Banana Bread Muffins Ingredients: 1 cup vegetable oil 2 eggs 2 cups sugar 2 1/2 cups mashed ripe bananas 1/2 teaspoon vanilla 3 cups namaste flour 1 teaspoon salt 2 teaspoons baking soda 1 1/2 cups chopped walnut (optional) Mix oil, eggs and sugar together with mixer. Mix in bananas and vanilla. Mix in remaining ingredients. Line muffin tins with paper liners. Spoon batter into liners until about 2/3 full (approximately 18 muffins) Bake at 350 for 18 minutes. Cool completely before taking out of the pan.

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Who can benefit from a Gluten Free diet? According to the recent medical literature, people with the following conditions may benefit considerably from a gluten-free diet:

Autism Downâ&#x20AC;&#x2122;s syndrome Seizures Cognitive problems (brain fog) Anemia Ataxia (loss of balance) Rheumatoid arthritis Multiple sclerosis Parkinsonâ&#x20AC;&#x2122;s disease Neuromyelitis

(inflammation of the nervous system)

Type 2 & Type 1 Diabetes Osteoporosis

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}

GFCF Meat Loaf Patties Ingredients: 1 1/2 pounds ground beef or chuck 1 slice gfcf bread, toasted and sliced into extremely small cubes (or ground into crumbs) 1 small onion finely chopped 1/2 cup ketchup 1 egg 1/2 tsp salt 1/4 tsp pepper 3 Tablespoons brown sugar 1 tsp yellow prepared mustard Green Onions for garnishing

Special Foods

Fast Food for

Fall

By: Lauren Robesky

Mix with hands, form into patties and fry on stove in non stick pan over medium high heat. Garnish with green onions for extra flavor and color to the meal. Yummy! Freeze individually and take out when needed. The patties can be reheated in microwave. Makes approximately 8-12 patties.

The following are meals that anyone can enjoy should you not be interested in gluten/free and caisen/free meals. They are yours for the trying, and they are quick, so you and your kids can relax after those rushed fall days. I keep these ingredients on hand, it takes a few minutes and it can be lunch, dinner, even breakfast!

GFCF Granola Bars Ingredients:

Fast, Easy, Better for you Individual Pizzas

1/3 cup dried cherries finely chopped 1/3 cup dried blueberries, finely chopped 1/3 cup dried apricots, finely chopped 1/3 cup dried dates, finely chopped 1/2 cup almonds, finely chopped 1/2 cup sunflower seeds 4 cups GFCF rice krispies

Serving size is based on number of muffins you use.

1 pkg English muffins 1 bag Turkey Pepperoni slices 1 jar pizza sauce 1 8 oz bag shredded mozzarella

Set aside after all above are mixed. In a separate, large mixing bowl, add the following.

Preheat oven to 350 degrees. Split english muffins, spread 1-2 tbsp Pizza sauce on each muffin. Layer on pepperoni slices and top with cheese. Bake until cheese melts.

Add:

Suggested side...I serve with baby carrots. Though,

1/2 cup almond butter or peanut butter 2 tablespoons earth balance vegan butter 1/4 cup honey 2 cups small marshmallows

let's be honest all anyone wants to eat is the pizza!

Melt until marshmallows are puffy, remove from microwave, stir well and pour over dried fruit/rice crispie mixture. Stir well. Add 3/4 cup gfcf mini chocolate chips, stir in. Press firmly into 9 x 13" pan and freeze for 15 minutes. Slice into desired sized bars. Individually wrap or place in snack sized bags and store in refrigerator. Photos: Kristina Laygo

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Special Foods Baked chicken breasts are done to death, but there is a reason for it. Boneless, skinless chicken breasts cook quickly and can take on any flavor. Unfortunately, they are expensive. I recommend buying in family packs when they are on sale and freezing in portion sizes that work for your family. Another great tip... freeze in a marinade and dinner is almost done by the time you take them out of the freezer. This chicken recipe calls for boneless, skinless chicken breasts but thighs would work well too.

Tom's Terrific Chicken Serves 4

4 small boneless, skinless chicken breasts Press one clove of garlic & rub on chicken Onion powder Poultry seasoning Salt Preheat oven to 350 degrees. Toss the chicken breasts with seasonings to taste. Bake for 20 minutes or until done.

Suggested side...Slice up some cherry tomatoes or leave them whole and everyone is happy.

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Anything-You-Want Quesadillas Any number you need.

1 pkg flour tortillas (6 inch is fine) Leftover chicken or steak (or whatever you have) Fresh spinach (feel free to put in some other

veggies too)

Shredded cheese (I like Monterey jack) Salsa or Guacamole (whatever your kid will eat) Nonstick spray or olive oil spray Spray skillet with nonstick spray and heat on Medium. While skillet heats up, layer your ingredients on half of flour tortilla, starting and ending with cheese(about 2 tbsp on top and bottom). Fold over tortilla and cook in skillet, flipping once cooking until cheese melts. Serve with salsa or guacamole.

Suggested side...This has it all. If you want to do a side still, I would go for a simple salad or refried beans.

Aspergers

House

in the

Features What's Inside: The following articles are advice on how to raise a child with Aspergers Syndrome & come out similing.

By: Dr. Lynn Adams

Raising children is challenging to begin with. Raising a child with Asperger syndrome (AS) adds a whole other dimension to child rearing! Children with AS present with a myriad of challenges and needs that most parents are ill prepared to address. In contrast to some children with autism, children with AS are quite verbal. Distractingly verbal, exceedingly verbal, VERY VERY VERBAL! This can be a mixed blessing. The child with AS may be able to share information about dinosaurs but may not be able to stop sharing that information easily. The child with AS cannot always just drop a subject. If there is more information to be shared then it must be shared. Parents have to be willing, when necessary to stop the child from sharing. This is NOT easy. It runs counter to the parent’s instinct to let their child share. Parents have to be willing to face a meltdown in order to rein the child in. If parents of children with AS want their child to be more successful at making and maintaining friendships, the parents have to be willing to stop their child mid-lecture. They have to be willing to say that the topic is changing and dino talk is over. They have to be willing to allow their child to become upset and they have to be willing to help their child recover and move on. It is patently unfair to allow a child to believe that they can control the topic of conversation. Doing this does not allow the child to develop conversational skills. You know…..I talk, you talk, I talk, you talk. So parents, shift the topic, face the possible meltdown head on by reminding the child that they will be able to talk about dinosaurs at another time in another place with another person. Remind the child that nothing bad is happening to him or her. “Mom, her breath stinks.” “Dad, why is he so fat?” Children with AS are honest, open and curious; all good characteristics except the child’s social “filter” does not work. A 4 year old child can get away with making personal comments, a 9 year old cannot. Parents have to be prepared to make apologies on behalf of the child. Parents have to be ready to help the child script what should and should not be said and to whom. THAT is a huge undertaking but one that can be managed on a case by case basis. If you know you will be visiting Aunt Louise who drinks lots of coffee, remind the child with AS that she may indeed have bad breath but that he/she should not comment on that. When your obese neighbor is watering the flowers next door, you must remind the child that no comments are to be made about his size. Parents need to note the context in which their child makes unacceptable comments and plan accordingly. That does not mean that all comments will be prevented, but many can be. When the comment happens, parents should calmly and clearly explain to the child that the comment was not appropriate and request an apology be made. The point should not be belabored. Once the event is over, the event is over and score is not kept. Past errors are not revisited or rehashed. Plan ahead. Write a social story about

bad breath or weight or whatever else your child tends to comment on. Read the story frequently. Help your child develop that inner script. Children with AS like to argue a point………and they can be relentless. It is therefore the responsibility of the adults NOT to engage in the debate. Parents who need to be right will find themselves mired down in discussions that may serve no real purpose. If your child makes a point that is not correct, acknowledge that the child thinks his or her perspective is right, tell the child that he/she is not correct. Tell them the correct answer and move on. Do not engage in the debate. It is incumbent on the parent NOT to engage in the argument. Your child is wired to argue and debate, YOU have to be the adult and NOT engage. Walk away. Withdraw from the discussion. Do not revisit the point. Parents are encouraged to put up a hand, remind the child that the discussion is over and to walk away. If your child asks why, you should feel free to say “Because I said so.” Yes, that dreaded phrase that we ALL resented in our youth is functional and can be used without guilt! Try it! It can work! There is a time and place for meaningful discussions. There is rarely a time and place for an argument. Know the difference. Pick your battles carefully. Parents, embrace your quirky, challenging, lovable, frustrating, charming, intelligent, literal, curious, amazing, beautiful, courageous child!

Dr. Lynn Adams is the author of several books, an education specialist and a speaker. The books she has written are the following: Group treatment for Asperger Syndrome Autism and Asperger Syndrome: Busting the Myths Parenting on the Autism Spectrum Buy them at: www.pluralpublishing.com All of the books are a quick read and the “Parenting on the Autism Spectrum” book in particular is a favorite pick from the editor of Something Special Magazine! 19 Something Special www.somethingspecialmagazine.com

Features

A Day in the Life of

A Teen with Aspergers By: Hayden Mears

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Hayden Mears is a recent high school graduate and is this year’s University of Tulsa’s Media Award Recipient. He starts college in the fall. If you have a question for Hayden- please ask him! We are starting a column called “Ask Hayden”, where he can give insight to parents raising children with Aspergers.

Growing up with Aspergers can be difficult, because it affects relationships, emotions, and life in general. However, with early intervention and dedicated parents, a child with Aspergers can succeed and do everything children without it can do. I’m eighteen now, fresh out of high school, but it was not easy getting to where I am today. All through middle school I was bullied relentlessly and humiliated almost daily by my peers. There were some days when I didn’t want to go to school the next day. I have very high functioning Aspergers, but there are some children who have it worse. But it is my firm belief that any child with Aspergers, no matter how serious it is, can overcome any challenge if he or she puts their mind to it. Aspergers can be a serious obstacle in establishing and maintaining healthy relationships. My case, my inability to be able to tell when someone is joking can get in the way of being good

“Some children may not be diagnosed until later, but it is still possible to get treatment.”

friends with someone. I have had problems with this in the past, and great friendships have been nearly ruined because of it. Aspergers is not an easy thing to deal with, but it is possible for one with Aspergers to reach his/her full potential. It make take extra work, but it is worth it in the long run. The sad truth is that some kids lack understanding and as a result they tend to treat children with Aspergers poorly. People with Aspergers like to dwell on one particular subject for a long period of time, sometimes for hours or even days. I enjoy thinking about things I am interested in, such as Harry Potter or the latest big budget movie that everyone is talking about. Having Aspergers can also make me socially awkward, and that is particularly difficult for me because I am easily embarrassed.

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Angels Aspergers Features

}

I had early intervention, and treatment at a very young age. Some children may not be diagnosed until later, but it is still possible to get treatment. People with Aspergers have just as much potential as anyone who doesn’t have Aspergers, so don’t let the fact that you have Aspergers discourage you or make you feel like you can’t have a good quality of life. On bad days, it may be easy to let it discourage you or blame the Aspergers for your unpleasant day. There is no cure for Aspergers, but there are ways to control how serious it is such as maintaining a healthy diet and getting treatment as soon as possible. My recommendation to parents of children with Aspergers is for them to be there for their children and remind them that there is nothing wrong with them. It is simply an explanation for why they behave and interact the way they do. As a young adult with Aspergers, I tell everyone who also has it that they have the ability to make a name for themselves and overcome the many challenges that come with it.

QUESTIONS: Let us know.Your question could be featured in our next issue. Email us at: info@somethingspecialmagazine.com.

In this section, parents, you can write to Leanne your concerns about anything on the spectrum. She is not a doctor, BUT she walks the walk every day with Aspergers. She could help you understand your teen and tween, just ask. Email your questions and concerns to: askleanne@somethingspecialmagazine.com.

Everyone learns from their peers. It is part of socialization to learn behaviors from others their age. What they learn supplements their own innate knowledge, and they act on this combined information. Those of us with Asperger’s Syndrome seem to lack this innate knowledge. Unless something is explained to us step-by-step, we can only observe our peers. Some are genuinely interested in other people and eager to understand them. These kind of people are rare on the Spectrum; most care little for how others act. The teen years are when peer-socialization finally takes dominance over family-socialization. As children enter into their teenage years, they are loathe to listen to their parents about how they are “supposed” to act. Instead, they look to their friends for clues on how to behave. Those on the Spectrum almost always stand apart from the crowd. I had an interest in what other people were interested in, but only from a scientific perspective. I could state the current fads, but I almost never actually followed them. When I was fourteen, Louis Vuitton purses became popular. Almost every girl at school owned one, or at least a convincing knock-off. Being observant, I knew this, but I did not ask my parents to supplement my own allowance so I could purchase one. I thought it was silly to carry a purse around; I could carry everything I needed during the course of the day in my pockets and backpack. And to spend hundreds of dollars on something to hold your stuff… it seemed ridiculous. I was not always so aloof. Only a few years before, I still struggled to fit in with my peers. Girls my age were beginning to be interested in boys. At first, I scoffed at my love-sick friends and rolled my eyes at their pining. But as it became obvious that the trend was not going to pass, I decided to give it a try. I’m not sure if I convinced myself that I liked Jared or if I was genuinely interested, but I set my sights on him. He was cute enough, bleached-blonde hair and a round face. He rode my bus, but I had never spoken to him. Having found a target, I proceeded to the next step of the ordeal – discuss it with a friend. My judgment was not the best. I decided to whisper to Kara about my newfound interest, and she blurted it out to the entire bus. Of course that caused a stir. In response to the shouted questions, Jared only shrugged his shoulders nonchalantly. For me, this was a catastrophic failure. The confession was not

with

supposed to take place for several more weeks, and I was not to be present when a friend shyly handed him a note with my writing. My plans had been ruined. After that, I swore off boys. They were nothing but trouble. Though I was slightly less mature than my peers, the boys were less as sophisticated as me. Sure, I had the occasional infatuation, but never acted on it. While my friends were dating and chasing boys, I watched from a distance, still scoffing and rolling my eyes. As I approach twenty, I feel a teenager. When someone asks my age, I want to say “seventeen.” All through my life, my own interests always seemed to lag two or three years behind my peers’. That certainly made relating to others difficult, but I was never one for having a huge number of friends. I was happy enough with my small circle of friends who shared my interests. Even to this day, I think that the interests of my peers are a little silly. Gossip is boring, and parties hold no appeal. I’m happy enough to hang out with my friends, go out to eat, watch movies, talk together. While some might be baffled by a nineteen-year-old that spends Saturday nights at home, I’m happy, and that’s what counts.

Marisa LeAnne Geoghagan is a nine-

teen-year-old girl with Asperger’s Syndrome. She was originally diagnosed with ObsessiveCompulsive Disorder at the age of fourteen. When she was eighteen, she was tested and diagnosed with Asperger’s Syndrome. She is currently attending Armstrong Atlantic State University in pursuit of a degree in Computer Science. She is planning to move into the dorms in the fall, and is currently working two jobs.

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Features

school that is equivalent to our district school. To be continued…

From the Mom of a Five Year Old with Aspergers

The Cycles:

By: Wendy Campbell

Being the mom of a five year old comes with many challenges. Add in a little Aspergers, and you sometimes have the recipe for the perfect storm. It’s been quite a roller coaster these first five years, but we feel like controlled chaos may finally be on the horizon. And, since most of our readers are “special” parents, I’m sure you all understand exactly why we’re pretty excited about it.

The Beginning:

The most asked question I get as a special needs mom is, “how did you know?” For us, we started noticing some “things” around the age of 12 months. First and foremost, our sweet, little Kai was completely silent: no babbling, no bye-bye-ing, no mama/dada, etc. He didn’t respond to his name, never had good eye contact, and flapped his hands a lot, while turning his wrists, like he was revving a motorcycle. Now, each of these “things” independently would simply be a quirky, little trait perhaps, but once we compiled them into a list of “our top concerns with Kai”, we had enough to raise a red flag. After many hearing tests and many discussions with our local pediatricians (we moved quite a bit), our relentlessness finally led to a trip to a Developmental Pediatrician in Jacksonville, Florida at the age of two. After an eight month wait to go through the evaluation and another month to wait on the report, the results came back that Kai was on the Autistic Spectrum, but let’s wait and see since he’s so young. Really??!! First of all, we self-diagnosed him on the spectrum about a year ago and now you’d like us, his parents, to sit back and see how it goes?? He had already been in speech therapy since the age of 18 months with the Early Intervention Program in Florida, and we received in home OT-type therapy once a week. He had an IEP created for speech and we were able to add OT by obtaining a diagnosis of Sensory Integration Disorder from a private OT before we moved to Savannah in 2008. Fast forward past hundreds of hours spent on the computer searching for help and a direction or course of action to take, and countless trips to the pediatrician still stating “something is going on with our son” and we finally received an Aspergers diagnosis from a local psychologist just before he started pre-k. Armed with a diagnosis, we were finally able to narrow our search for the first time in four years.

Present Day:

Kai just completed the state funded pre-k program at a private school and actually had a great year, thanks in large part to the incredible devotion and caring of his teachers. Now, the big question is “what do we do for kindergarten?” We’ve briefly looked into the 22 Something Special www.somethingspecialmagazine.com

Campbell family

private school option, but they are not designed to integrate special needs children within the classroom environment. We’ve had his IEP adjusted to give him the maximum allotted 25 hours of added support; versus the 1 hour of OT he received this past school year. We requested an Alternative Placement into a full inclusion Autism Program to ensure a smooth transition into kindergarten, but were initially denied by the Special Education Department at the Board of Education because they came to his school and observed him for thirty minutes and felt his self-help skills were appropriate for his age. He also had social interaction with a fellow student by playing chase. Never mind the fact that Kai was actually running back and forth in a straight line (what he does to ground himself) and the other student joined in for a minute. After one meeting at our request, we provided enough evidence, in the form of examples of his Asperger behaviors and a second diagnosis from Emory University (we do not recommend this institution in any way, as we found them completely useless), they finally approved him for the Autism Program, but at a school that is not the educational equivalent of his district school. After a second meeting stating that we would not agree to put him into a school that is well below his district equivalent, in terms of socio-economic status and educational performance, we are back to square one. Our next step is to contact the Superintendent to arrange a meeting and ask that he be placed in a full inclusion Autism Program, but at a

I’ve asked every parent that has a child on the Spectrum if their child seems to “cycle” and all have agreed. Kai has what we call “good phases” and “bad phases.” It is a classic Jekyll/Hyde scenario with naturally the Hyde moments far outweighing the good doctor’s. The good phases are more like incredibly fantastic. We have a neurontypical child that is capable of carrying on two sided conversations, helps mommy when I ask, follows directions, goes through mornings without tantrums and endless whining, eats well and at a relatively normal rate, sleeps throughout the night, and is always “present.” The “bad phases” are well, pretty much the opposite of everything listed above. The mornings involve whining, screaming, 45-60 minute breakfasts, fights over everything he is asked to do (including dressing and using the bathroom), and a little brother feeding off of Kai’s behavior and mom’s stress. He usually does pretty well at school, but then lets it all out after he gets home. By evening, he is exhausted from holding it together at school and not sleeping at night and loses any and all control over his body. There is an infinite amount of running around, rough housing with Cruz to the point of injury on someone’s part, more crashing, fights over putting his weighted vest on, and that’s all while I’m trying to cook dinner. Dinner involves watching him drift off to “Kai Land,” while he shakes his head, flaps his arms, and sometimes rolls his eyes, with the intermittent mix of “eat your dinner” for at least an hour. The night time ritual of baths and books helps slightly to calm him down, but it is a constant struggle to fight his overloaded body from losing control again. His sleep patterns vary in his bad phases, in that sometimes he cannot fall asleep for hours and other times he wakes up for hours in the middle of the night. However, either way results in a vast shortage of good rest. I always describe these times to family and friends by saying, “It’s like my child is completely swallowed by this thing…this Aspergers. I know Kai is still in there and I desperately just want to reach through the layers and pull him out, but no matter how hard I try, I just can’t quite reach him.” In terms of triggers, we have come to learn that any type of illness instantly causes a bad phase. We have also realized that traveling affects his cycles, but not until we return home. Obviously, we have not been able to pinpoint the onset of a good phase, or I wouldn’t be writing about cycles. However, we did notice him experience an upswing at the beginning of the summer break, but we attributed it to him not having to deal with the stress and time constraints of getting to school. For now, the research and data collecting is ongoing and the search for the key to unlocking the mystery remains.

Social Challenges: Now, at the age of five, the social dilemmas associated with Aspergers are beginning to show their face in a much larger way. Obviously, he has no true friends at school and rarely has a social interaction of any kind. His teachers excitedly told me about each and every one that occurred and I could count them on one hand. Birthday parties can be absolute nightmares, especially if I have our two year old along with us by myself. Kai has no interest in playing with the other children and the standard five year old party activities don’t interest him (his IQ is off the charts), which means he must find alternative ways to occupy his attention. He is often overstimulated from the noise and chaos of a party and that typically results in an inappropriate behavior, such as randomly crashing into someone

Features

or being the only child running in a line in the corner, while the other moms stare with annoyance. I’ll never forget the week I spent in the spring attempting two parties in a week by myself with both kids. We finally left the second one after about 45 minutes, strapped them into their car seats, drove home, put them in the backyard, poured a glass of wine, sat on the patio and cried my eyes out for about ten minutes. Soccer practice and games usually went about the same way and frequently ended in complete frustration, exhaustion, feelings of isolation, and silent tears. Now at five, he can’t get away with aimlessly running around the field or another team’s field quite like he could when he was three. It stands out quite a bit more when your child is the only one throwing a tantrum on the sidelines because he fell or refusing to rotate in. My husband and I would stand on the sidelines (for the 5 minutes he actually agreed to be on the field) watching Kai chase the group of kids chasing the ball, without a care of ever touching the actual soccer ball. We would watch in anticipation as he honed in on another player, as we helplessly yelled “no” from the sidelines as he randomly crashed into them and knocked them down for no reason. You feel like it’s your job to afford them these great social opportunities and use them as teaching experiences, yet every attempt seems to fail. Your child could care less and you end up completely stressed out and emotionally drained. I have an infinite list of things that I need to do for Kai, but what I have been skipping for the better part of five years is what I need to do for me to allow myself the patience and endurance to deal with Kai. Exercise, me time, a personal, non-child related hobby have been on my list for a long time without coming to fruition. As moms, it is simplest to put ourselves aside in order to have the time and energy to take care of everyone else. However, this path leads to fatigue, resentment, and anxiety. It is vital that time for we become part of our daily lists. We at least deserve to be penciled in!!

A Mom’s Day:

There is no doubt that being a mom is the hardest job any woman will ever face and having a special needs child just ups the ante. I always kid around that Kai should have come with a hard core manual and money tree. The range of emotions I can experience on a daily basis is frightening. I always start out the day with a full serving of patience that has already been bit in half after I survive the morning. I am defeated already, but rise up again on the drive to school. After drop offs, I begin to recharge the patience and reflect on what I did wrong and what I could have handled in another way during the morning routine. I feel guilty for the yelling that ensued during breakfast and vow to work on my flaws to become a better mom. I whittle away at my daily list: work, school, house stuff, mom stuff, errands, etc. I try to work in a run and become inspired: new business ideas, getting back in shape, fresh ideas to work with Kai. Wait… more guilt, with a little pinch of worry on top. Am I spending enough time with Cruz? Is he being affected by the yelling and tantrums? Did he just shake his head in a weird way? Does he think that whining and crying is supposed to be your response to everything and, if so, how do I curb it? Husband, oh yeah, him. Wow, we need a date night. Am I paying him enough attention? When’s the last time we discussed something other than work, kids, 23 Something Special www.somethingspecialmagazine.com

Features

Do you BELIEVE

or house stuff? Is this what marriage really is? Is this what life really is? Okay, exercise some discipline and calm down. Vow to work on being a better wife, while improving your mom skills. Time to pick kids up, entertain and educate them for the rest of the afternoon, while now chiseling at aforementioned list while the stress level builds yet again. Evening craziness resumes (see above). Kids finally in bed, kitchen clean, dog bones dispensed, glass of wine in hand, and now daily reflection. New ideas for Kai, worries with Cruz, gotta spend more quality time with the kids, gotta spend more quality time with my husband, gotta take time for myself. You moms get the picture! So…ultimately what does it all mean, being the mom of a child with special needs? It means that at the end of the day, in spite of the tears, the frustration, the guilt, the craziness, the money, the doubts, the worries, the embarrassing moments, and the exhaustion, I am right where I was meant to be. I am the mom of Kai, an incredibly intelligent, witty, adorable, and hilarious five year old that makes me laugh through my tears and is my purpose for being. Ultimately, Kai has taught me as much as I have taught him and enables my eternal pursuit of becoming a better me. At the end of the day, we “special” moms might be a little more tired, but we are able to rock a most solid suit of armor, thanks to our “special” children.

Attention Deficit/Hyperactivity Disorder (ADHD) may be the most controversial disorder in the mental health field and high on the list of medical illnesses whose very existence is challenged. As a child and adolescent psychiatrist, I hear many misinformed statements and even more questions about ADHD every day. One of the most common is, “Do you believe in ADHD?”

Wh at i s t h e s ig n o f a g o o d d e c i s io n ?

The first time you think about your child’s future without anxiety. Your child’s future is always on your mind, but it’s hard to find time to plan for it. Until now. With MassMutual’s SpecialCareSM program, Special Care Planners can work with you and your health care, financial and other professional advisors to help you develop the right life care plan for your child’s future. Our planners are specifically trained in estate and tax planning concepts, special needs trusts and government programs to work with families who have special needs. And for over 158 years, MassMutual has been accountable to policyholders and members — the people who own them — which means they have the strength and stability you need for the long term. To find out how we can help you take care of your unique financial needs, contact a special care planner today. Sam Crossley, CLTC, Special Care Planner 7393 Hodgson Memorial Drive, Suite 201, Savannah, GA 31406 Phone: 912-629-2263 • Fax: 912-356-9640 • Email: scrossley@finsvcs.com

Kai with Brian (the poddle) Photos: Kristina Laygo

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A related question is, “Is ADHD over diagnosed?” It is usually followed by theories such as: The parents of children with ADHD just want their kid to go to Harvard; if the parents spent more time with the child, then he would not need to go to the doctor; or they just want an excuse for his bad behavior. While there may be some validity to the concern that ADHD is “over-diagnosed”, there are probably an equal number of children who have ADHD that go undiagnosed. Most studies estimate the prevalence of ADHD in school aged children to be 5%. Therefore one in twenty school aged children has ADHD. Despite the notion that a large proportion of parents want to drug their children, my experience is that parents come to my office hoping that there child does NOT have ADHD. If the child is diagnosed with ADHD, most parents are reluctant to start medication. So how do you diagnose ADHD? Many people call my office to get “ADHD testing.” Unfortunately ADHD is a descriptive diagnosis and there is no test. ADHD is diagnosed by interviewing and observing the child, interviewing the parents, and obtaining rating scales from the parents and teachers. There are computer tests which can provide additional information, but these can not be used to make a definitive diagnosis. The two most common computerized tests are the Conner’s Continuous Performance Test (CPT) and the Tests of Variables of Attention (TOVA). Hearing and vision testing should always be completed prior to making a diagnosis of ADHD to rule out problems in these areas as the cause of inattention. When a diagnosis of ADHD is made, several predictable comments are often made by a parent. The most common is, “he can’t have ADHD, because he can play a video game for hours.” Two aspects of ADHD often confuse people. One is that children with ADHD are drawn to activities that are fast paced and provide high amounts of stimuli. Video games clearly fit in this category as does TV. The second confusing aspect of ADHD is that children with ADHD have no impairment in focusing on topics in which they are inherently interested. In fact they can hyper-focus on these areas of fascination. However, their ability to “pay attention,” that is to focus on something that is boring, is severely limited. Everyone has this disparity in attention versus fascination, but it is greatly exacerbated in children with ADHD. Another common comment is, “She can’t have ADHD, because she’s not hyper.” There are actually three types of ADHD. ADHD, Predominantly Hyperactive/Impulsive Type is most commonly seen in preschoolers. ADHD, Predominantly Inattentive Type is more common in girls and is frequently called ADD. The most common type is ADHD, Combined Type, with both inattentive and hyperactive/impulsive symptoms. My favorite complaint regarding the diagnosis is, “He doesn’t have ADHD. I acted just like that when I was his age.” My unspoken thought is, “Yes, that’s because you have ADHD as well.” In fact, 25% of parents with a child with ADHD also have ADHD themselves. The

ADHD? By: Dr. Kevin Winders, Savannah Psychiatry

heritability index for ADHD is greater than .7. This means 70% of ADHD is due to genes and 30% by other factors in the environment. For comparison, the heritability index for height is approximately .9. Once a child has been diagnosed with ADHD and the parent has accepted this, the next big question is, “Do we have to treat it?” Yes! Psychiatric disorders are descriptive diagnoses. There are no blood tests, neuroimaging techniques, or X-rays. So how do we know when to treat a mental illness? The answer is whenever the illness causes distress to the patient or impairments in functioning. In order to make a diagnosis of ADHD, there has to be impairment in functioning. Therefore every child with ADHD should be treated. There are several well documented negative effects that are associated with untreated ADHD including: low self esteem, impaired family and peer relationships, injuries, car wrecks, legal problems, smoking, alcohol abuse, drug abuse and, of course, academic difficulties. Another issue is whether medication is needed to treat ADHD. It is clear that there are many ways to improve a child’s functioning including behavior techniques, social skills training, organizational skills training, accommodations in school, individual and family therapy and educating parents about the illness. However, while most professionals agree that treatment of ADHD should include some or all of the above treatments, medication has been shown to be the most effective treatment for the core symptoms of ADHD including inattention, hyperactivity and impulsivity. Most of these medications are known as psychostimulants, or stimulants, and include Ritalin, Concerta and Adderall. Probably the most controversial question in the treatment of this controversial disorder is whether or not stimulant medication will lead to drug abuse. While it is true that these medications are abused to some degree, multiple studies show that people treated with stimulants are less likely to abuse illegal drugs compared to people who have ADHD but are not taking stimulants. So do I believe in ADHD? The genetic data is compelling. My mentors told me it existed. My professional organization tells me it exists. However, these reasons are not good enough to encourage me to sit in my office everyday evaluating patients, talking to parents, and dispelling myths about psychiatric disorders which prevail in our society. The reason I believe in ADHD, is the hundreds of kids who come into my office frustrated, depressed, defeated, and angry and light years from reaching their potential. With treatment many of these children, with much effort on their part, become happy, self-confident, productive members of our society. That’s all the proof I need. 25 Something Special www.somethingspecialmagazine.com

Features

Common Misconceptions about

Tourette Syndrome By: Michelle McGee

I have had several conversations with people who make false assumptions about my son based on the information that the media provides about Tourette Syndrome (TS). It angers me that many of the media sources who do stories on TS or make reference to TS do so in a very sensationalized manner, leaving the general public to assume that TS is a cursing disease and is punch-line fodder.

Jacob McGee

ith megaphone in hand I am telling anyone who will listen what TS is, and more importantly what it isn’t. That said, here are five of the most common misconceptions that I have seen with regards to Tourette Syndrome.

Misconception

TS patients make funny sounds and move in odd ways that’s it. Unfortunately, a diagnosis of TS usually doesn’t come alone. TS is notorious for bringing a few friends along for the ride. OCD, ADD, ADHD, depression and anxiety are some of the conditions often associated with TS.

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Misconception

TS is a swearing disease. The images that we see on TV are inaccurate. Less than 15% of patients with TS have coprolalia - a condition that causes them to use obscene or inappropriate language. My son has both vocal (grunting, snorting, sniffing, word repetition) and motor tics (stomach punching, blinking, jaw stretching, face scrunching), but not coprolalia.

fter Jacob’s initial diagnosis of TS at age 6, he was diagnosed with OCD at age 8 after one of his compulsions to put small objects in his mouth landed him in the ER with a metal key chain charm lodged in his esophagus. At that point, we had to resort to the one thing we didn’t want to do – medicate. Fortunately for us, Jacob’s psychiatrist, Dr. Kevin Winders put Jacob on Zoloft for his OCD and within a matter of days the urges seemed to subside enough for Jacob to manage.

Misconception

TS is very rare. Many cases of Tourette’s are not correctly identified or are so mild they go undiagnosed. However, according to statistics between 1 to 10 children per 1000 have Tourette’s and as many as 10 per 1000 people have some form of a tic disorder.

Misconception

acob does attend a school for kids with learning differences. Chatham Academy provides Jacob with the resources he needs to help him become the best student he can. I highly recommend Chatham Academy to any parent looking for a school that understands what it truly means to have learning challenges.

Misconception

ince Jacob’s diagnosis I am amazed at the number of people I have met who have TS or know someone who has it. It’s not nearly as rare as people assume.

People with TS can control their tics if they really want to. Try this: Hold your breath as long as you can. Can you hold it for 30 seconds? A minute? Longer? Maybe, but at some point you will need to breathe. And if you’ve held it for a long time, you will find yourself gasping for air. TS patients can suppress tics for short periods, but it’s very uncomfortable (so I’m told by my son) and usually results in an explosion of tics. Telling someone to stop ticcing is like telling someone to stop breathing or blinking. It’s possible, but not for long.

TS patients are debilitated by their condition and cannot lead productive lives. When I mention that my son has TS, many people will ask if he is able to go to school with “normal” kids. After I take a deep breath I assure them that my son is just as “normal” as any other kid (whatever that means) and that yes, he can hang out with the regular crowd. TS does not prevent him from doing anything. And while some cases are more severe than others, and can affect one’s life adversely, most people with TS lead very active, productive lives.

ake a minute to visit www.tsa-usa.org and educate yourself on TS. Then pass this article on to someone else. Let’s start a chain of awareness so that kids like Jacob can be understood and accepted. Also be sure to visit my Tic Dock page at www.moxiemomma.com to read more about TS and how it has affected my life.

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Features

The

Upside

Meet Michael.

In his own words, he explains his life with Down Syndrome at this moment.

Downs

My name is Michael E. Holton, Jr., but I like people to call me Mike. I’m 16 years old and I have Down Syndrome. I go to South Effingham High School and I’m in the 10th grade. I’m in a Special Education class for part of the day, but I go to a history class and a computer class with all the other teens. I love history! It’s my favorite class. I like to learn about World War II. My great-grandfather, named Theo Underwood, died in World War II. I got invited to the Prom this year by a senior. Her name is Christy. She’s very pretty! We had a great time. We fast danced and slow danced! I like to dance and sing. I dance and sing in my room upstairs. I put the volume on my iHome on at least 25, which is medium loud, but my mom, dad, and sister are always telling me to turn it down. I love to horseback ride and I’m now starting to learn to cantor. Cantor is a slow gallop. I’m going to Equestrian Special Olympics in August in Perry, GA. I want to move it to November like it use to be. It’s cooler in November. I want to win gold. My teacher is Bonnie Gentry. I train at Faith Equestrian Center in Guyton. I like to play Wii and I like to play on the computer. I like it when my friends, like George, come over and hang out with me. We both like girls. Boating and fishing with my dad is always fun. We go fishing for whiting but sometimes we catch black tip sharks. Having Down syndrome sometimes makes it hard to learn. But, I just study harder and I make good grades. I’m a good speller and I know some hand-signs. Mrs. Connie, my cousin, is an interpreter at school and she has taught me some hand-signs. As you can see, I am a regular teenager, complete with fighting with my sister, loud music and liking girls.

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Please send us your stories about your kid, (or have the kids send it in- they can do it) with Down Syndrome. Please send your article to info@somethingspecialmagazine.com no later than October 5th to be considered for our December issue.

Upside of Downs- From a Parent of Child With Downs Syndrome I was so impressed with Michael’s letter (the teen that wrote about life with Downs Snydrome on the previous page) that I asked his mother about what therapies Michael received and when he received them. This is the letter that followed in response to my question.

Features

The Buddy Walk Saturday, October 23, 2010

Michael started physical therapy when he was around 5 months old. Speech and occupational therapy started around a year old, I believe. He continued with private therapies until he was probably around 7/8 years old. He received speech and occupational therapy at school once he reached kindergarten (at that point he was getting double therapies). We did a couple of years of occupational therapy at school and he still has speech therapy at school. I have to give much of the credit for Michael's success to his great-grandmother, Ernestine Underwood. When I went back to work after Michael's birth (he was about 3 months old), she kept him for us. She would take him for walks and tell him about the birds, animals, sounds, etc. She was also very big in to reading and singing to him. When he started crawling, we took a playpen to her house and she told us that we could take it back home! She said that he needed to be down exploring and learning. I told her that she might need it so that she could get some work done and not be worried about him getting in to something. She said that her work would wait, that she just wanted to spend time with him. And she did! They still have a very special bond. In fact, she is the ONLY person who he will allow to kiss and hug him. I'm not even "allowed" to do that! When Michael was 3, we put him into the 2 year old program at Maggie's Morning school two mornings a week. The next year he went into the 3 year old program three days a week and then he went to the preschool program there five days a week. I thought that it was important for him to be around "typical" children. Kids learn a lot from other kids! He also had wonderful teachers in elementary school. I give them a lot of credit! Especially his kindergarten teacher, Kellie Lee. We did two years of kindergarten and she volunteered to have him the second year too. She was firm, but loving with him. She was just what he needed! And then there has been his therapeutic horse back riding that I think has also been a benefit to his learning. He started riding when he was 8 years old with Heroes on Horseback in South Carolina. And then we started riding at Faith Equestrian, here in Guyton, about 4 years ago when Bonnie opened the center. The riding has made him really use his mind. He started out riding with a lead person and two side-walkers, and now he's an independent rider. He really has to focus on what he's suppose to be doing. Go right, go left, go around the barrels, walk, trot, etc. It has also been good for his muscle tone and strength. Another thing with Michael, we never set limits on his abilities. Yes, I know he has limits, but don't we all? We put him in t-ball when he was little and he took several years of tae-kwan-do. He even took golf lessons one summer. His father lets him drive the boat (with his assistance) and he really does pretty well. My advice to other parents is to treat your child just like any other child. Just remember, that every child has their own special talents....you just have to find out what it is and help them to succeed. I guess I'm just proud of him and love him so much, it's hard not to brag on him! And I'm so thankful to all the people that have come into our lives that have helped Michael. There are truly angels that walk here on earth, and I'm sure glad that God sent them to us.

The LCDS society puts on a full festival on the day of the walk complete with blow ups, carnival games, train rides, live music and entertainment, food, and informational booths for those parents of special needs children. It is a day full of family fun. This event is mainly for awareness in the community of the importance of people with Down Syndrome and their contribution to society as a whole. The Buddy Walk has become a major fundraiser. We use the money for Camp Buddy, family outreach (with new parent packets), local and national conferences, family activities, etc. Visit the Low Country Down Syndrome page on Facebook to find out registration information for the Buddy Walk. Preregistration is suggested but not mandatory. As a side note, The Low Country Down Syndrome Society will also be selling wondering calendars for the next year with glorious pictures of children with Down Syndrome, so plan to buy one for your business or loved ones for Christmas (early shopping!). Do not forget to find us on Facebook.

The event takes place at Forsyth Park and includes rides, food, games and live entertainment for the entire family.

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Features

The Joubert Syndrome &Related Disorders FoundationWill Hall’s Story

Will celebrating St. Patrick's Day

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“The faith to believe, the hope to dream, and the love to see it through.”

Era Hall was 35 years old and overjoyed to finally be pregnant with her first child. After years of treatment for endometriosis, her dreams of becoming a mother were about to come true. Her husband, Wayne, was just as ecstatic at the news! They, like all new parents-to-be, began preparing for their new addition. Seven months into the pregnancy, however, a Level 2 ultrasound indicated an underdeveloped portion of the fourth ventricle of the brain. The doctors were very candid with her. Era learned then that her baby wouldn’t have much chance of survival. “I asked God to just give me a baby to take care of. I wanted my own baby that looks like my husband and I want him to act like an Opie Taylor,” Era says, “When they told me about him, I wasn’t going to give him back.” “At first they thought it was Dandy Walker Sydrome (a congenital brain malformation involving the cerebellum),” recalls Era. When the beautiful Will Hall entered the world on April 9, 1995, the symptoms of his disorder manifested immediately. Because he had an underdeveloped vermis of the cerebellum, he experienced frighteningly accelerated breathing. At the time, they were still under the assumption that his condition was Dandy Walker Syndrome. But a resident pediatrician at Memorial Health University who had recently read about Joubert Syndrome thought about Will and approached Era with this possibility. Joubert Syndrome (JS) is a condition that, like Dandy Walker, affects the cerebellum. It’s a recessive trait and very rare. A mother in Maryland with two JS children started a foundation for other families of children with this rare disorder. Era learned that a Dr. Flannery from Medical College of Georgia does genetic studies on children with similar symptoms. Dr. Flannery came to Savannah and, after conducting a series of tests, confirmed that Will does have JS. He is one of only two children diagnosed with JS in this

By: Avis Coleman

region. After six weeks in Memorial’s neonatal unit, Era decided it was time to bring her precious child home. As excellent as the staff was to Will, it was hard to leave her baby every night –not allowed to return until 7 the next morning. “I had waited for him my whole life and I wanted him home,” said Era. JS affects muscle tone and coordination. He wasn’t sucking and swallowing and he didn’t open his eyes. Even as unresponsive as he was, the staff could tell that Will liked to be held and cuddled under the chin. Era approached the doctors about taking Will home and was told that he couldn’t survive since he can’t suck on his own. Era says she put her hands on her hips and defied the doctor, “He does too suck. He did it last night. “ At the time, a gastric feeding tube was keeping Will alive. It went down the nose, into the back of his throat and into his stomach. Era carefully watched the nurses replace the tube when needed and decided she could do it too. “I told Dr. Smith if eating was the only thing keeping Will from coming home, maybe she could teach me,” remembers Era. “And she said, ‘you know I think you can learn to do that.’” Era learned how to manipulate the feeding tube, and how to feed Will a bottle holding his chin and cheek muscles as well as his upper and lower lips and the baby bottle all in one hand. With the other hand she had to support his little body. It wasn’t easy but she learned to do it. She would do anything to bring her darling baby home. Her determination paid off. After both Era and Wayne received training on the gastric tube, the apnea monitor and the oxygen machine, the proud parents brought Will home. Not that it was easy. There was concern that Will had reflux and fear of him aspirating. A simple virus a few weeks after coming home caused him to stop breathing and Era had to give him CPR. He had turned blue. After several of these terrifying episodes, Dr. Cossio recommended the Halls take Will to the Scottish Rite Hospital. They did and stayed there from July until September. Era can’t say enough about the staff and the excellent, extensive care they received at the Scottish Rite. They did a complete workup on every system in Will’s body. Era studied and investigated different therapeutic options for Will. They came back to Savannah. With the help of in-home nurses, Era was able to return to work. Will’s gastric tube was replaced to try to get him the nourishment he

needed to strengthen his disadvantaged little body. His legs could wiggle, but he couldn’t use his arms or legs. They found out he was legally blind. He couldn’t sit up, hold or reach for things. He couldn’t even hold up his head or keep his eyelids open. Every extremity in his body was affected by Joubert Syndrome. There hadn’t been much research on this condition at the time. The doctors didn’t give him much hope of living more than a year. They didn’t know Era and Wayne Hall. It took awhile but the irrepressible Halls finally started seeing improvement. Will participated in therapy programs through Babies Can’t Wait, the Savannah Center for the Blind and underwent speech, occupational and physical therapy. He still had frightening spells where he’d stop breathing. He would get choked on draining mucus and his throat would close up and he couldn’t get air. Era had to learn a modified CPR protocol which she says she repeated at least “a thousand times.” At two years old, he was finally old enough for a special cranial facial surgery in Atlanta which stopped the “blue spells.” It opened up the airways and made his breathing easier and more consistent. He did well for another year or so but then, blood work came back with a low red blood cell count. At a Joubert Syndrome Foundation function in 1996, Era learned that JS children often suffered from kidney malfunction. Will had shown classic symptoms of JS and apparently the kidney issue was no exception. By the time Will was four, another child in the foundation network had developed Stage 4 renal failure and his mother had written an article about his experience. A kidney specialist in Atlanta confirmed that Will’s kidneys were failing and told Era he probably wouldn’t make the donor list because of his other disabilities. “I was devastated,” said Era. Will was sent to Egleston Hospital to see if they would consider treating Will. “I got all my stuff together. I had pictures of Will with family, Will at church. He isn’t just a blob sitting there. He made people happy. When people looked at him, he made them smile.” Era wasn’t going to take no for an answer. Dr. Hymes and Dr. Warshaw at Egleston agreed with the Halls and began a year and a half of treatments - regulating his feedings, monitoring his bloodwork, and they prescribed hormone replacements to increase red blood cell production. Era had to give 31 Something Special www.somethingspecialmagazine.com

Features

Will the hormone shot every two days. It wasn’t easy but it kept the kidneys in check. He was about to start first grade at May Howard. He weighed a whopping 48 pounds but something was wrong. His stomach and legs were swollen and they rushed him to the hospital. The kidneys were getting worse. He was put on home peritoneal dialysis. He would go to school and come home to do his dialysis. The nurses weren’t allowed, under hospital protocol, to do the procedure. Era and Wayne learned to do it. There was a high risk of infection with this kind of home treatment but they did their best to keep the environment as sterile and safe as possible. Less than a month passed (September 2001) when they got the call that there was a kidney. They rushed him to Atlanta and Will’s bloodwork was miraculously perfect and he was granted the life-saving kidney. The transplant went well, there were no more problems with his kidney and they were able to put dialysis behind them. Will started getting stronger. Era had been told he was blind, he’d never sit on his own, walk or talk. “I just told them he was precious. It didn’t matter.” By the time he was eleven, thanks to the doctors and orthotics from the Shriners Hospital in Tampa, he could sit up on his own and his legs and arms became stronger. He learned to kick. He learned to kick so hard that, last year he kicked a bed railing, trying to get attention and broke his leg. He had broken his tibia and fibula above the ankle. He was in the hospital from December 19th through the 24th. “That was not what they meant by Christmas break,” laughs Era. There were no other big hospital stays. The specialists would give the Halls direction and they would follow-up with Dr. Cossio.

Will giggled.” And like every other 14-year-old boy, he loved the arcade room, Tilt, at the mall. He’d come a long way from the baby who’d been given so little hope. “I think he was a miracle. It came from the excellent care of his parents,” says his teacher, Demetra. “Once we were in a meeting and the therapist recommended Will stop speech therapy because he had advanced as much as he could. Will’s dad turned around and said, ‘You can’t do this. Why would you take something from him that we feel he truly needs? I don’t want any program taken from Will.’” Wayne later told Demetra no matter how little it was, he deserved everything he could get. “Will lacked for nothing,” said Demetra, “Care, education, stimulation. Wayne and Era made sure Will had everything he needed while they had him.” And that tenacity paid off with the gift of a lifetime. After waiting fourteen years, Will finally spoke the words that are music to any mother’s ears. Demetra and Jessie caught on tape Will saying to his mom, “I love you.” Will left this earth on March seventh. His parents will never know for sure what brought on the high fever. The doctors think there may have been complications with one of his organs. Whatever the cause, his organs shut down within 24 hours and he was gone. In the few months since Will’s death, Wayne and Era have had to learn to live in their house without him. The outpouring of support from those who knew Will has been astounding. Even the children from Will’s special needs classroom feel the void. Demetra says there’s not a day that goes by that one or more ask her, “Where’s Will Hall?” “All of us need opportunities to do something more and

difficulties and even after the death of her only child (she was and is asked this often), she responds simply, “We had to choose our attitude. We chose to be joyful because Will was with us. We made that decision. We were not going to cry, not going to feel sorry for ourselves but be joyful that we had him with us and we are.” This is a part of the hymn that was sung at Will’s funeral. It’s called The Hymn of Promise. There’s a song in every silence, seeking word and melody; There’s a dawn in every darkness, bringing hope to you and me.From the past will come the future; what it holds, a mystery, Unrevealed until its season, something God alone can see. Era Hall served on the board of the Joubert Syndrome and Related Disorders Foundation for ten years. During that time, she and her fellow board members broadened awareness of the condition by starting e-mail conservations, creating a web site in 1998, formed a yahoo group and established a network of specialists, doctors and families throughout the world. She has attended JS Foundation Conferences, the Pediatric Neurology Conference in Washington, DC and is currently JS Foundation regional coordinator. Her dream is for JS to become like chicken pox or small pox – treatable and eradicated. She was inspired by a speaker’s opening line, “let our ceiling be someone else’s floor.” In the meantime, the foundation works for more research, networking and awareness. Its motto is, “The faith to believe, the hope to dream, and the love to see it through.”

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“He was teaching me and others. He was teaching my husband...I saw a gift in my husband I never knew he had.” Will had good clean kidney function, was developing, getting taller, doing more. He still couldn’t walk and talk but he’d learned to communicate in a different way. He had electronic switches he could use. He was animated, talked with his eyebrows, smiled, laughed and could understand. He began May Howard at 6 years old and stayed through the sixth grade. In middle school, he went to Myers where the family found Demetra Williams and her para-professionals, Sally Fair and Jessie Brown. “Will loved them to pieces,” said Era. And they loved him. “He was nothing but a joy. Will was a very delightful student to have. Even though Will was non-verbal, his receptive skills were high,” says Demetra. “You could talk to him. He would respond to us by making little sounds. I might say, ‘Are you having a good day?’ And he’d say ‘ah ahhhhh’… Some days he would be so noisy and have to get fussed at like a regular kid. “ The beautiful boy in the wheelchair became the “man about campus” at Myers. Everyone knew him and his joy was infectious. He made the teachers and students all smile just at the sight of him. He was a busy young man in and out of the classroom. Era and Wayne took him to the pool where he would float with a balloon pillowing his head above the water and he was able to float on his own. His mother also introduced him to horseback riding. “When we first met the horses, one leaned in and rubbed Will’s nose. “I thought the horse was going to eat Will. But Will laughed so hard. When he giggled his shoulder would shake and of course I had to giggle when 32 Something Special www.somethingspecialmagazine.com

unselfish in our lives.,” says Era. “It makes us better. There are many opportunities to do that in Savannah . I realized how hard Will worked just to be. Many young people don’t understand. They don’t take advantage of their lives. You get a better understanding of your own gifts when you realize how little Will had. What a big gift his whole life was. “He was teaching me and others. He was teaching my husband,” Era says proudly. “Wayne did things like give Will CPR, he was the first to give Will a shot, set up oxygen,” Says Era. “Wayne did things I never thought he could do. I saw a gift in my husband I didn’t know he had. I think any child brings that out. But Will especially did.” “Sometimes, I almost wander around and I feel useless. Even though I have my students at school, Will gave my life such purpose. We knew what we were doing, when we had to feed him, get him to therapy, give him his meds. We don’t have nurses in our home anymore. No schedule. I feel purposeless. I know how to take care of a child and there’s no one to take care of. I don’t feel cheated. I feel like I’m having to wait for whatever venture my life still has to take and I don’t have any road plans yet. “ In all things, God works together for the good. I found the good. I found good in people - good doctors, good therapists, the Shriners, the equipment that supported his little body so well. They were all awesome. We found all the good we could and the good came back to us.” Whenever asked how she manages to smile throughout all the

William Charles Hall, April 9, 1995 ~ March 7, 2010

“Grandma...Go With Us” Now you can take your Scooter or Powerchair with you!

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We Install Affordable Lifts

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Abilities Unlimited

Features

Music Therapy

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Navigation Autism

The Power of Music

By: Rhonda Langford

Rhonda with Cancer Survivor and Abilities Unlimted athlete, Lauren Dotson

I have one of the best jobs in the world! I work for Abilities Unlimited, Inc. a non-profit organization in Savannah, GA. We serve our citizens with disabilities, both kids and adults. Although our mission is to offer exercise to those in our community with disabilities, we have evolved from that objective to encompass a wide range of activities that improve daily life for our participants and their loved ones of all ages. Abilities Unlimited began with Tom Dunn who was released from physical therapy. He has a Traumatic Brain Injury. This left him with some paralysis and motor skills problems. He is in a wheelchair. Tom is an adult and because of his problems, when he had an aneurysm rupture when he returned home to live with his parents in Savannah. He attended therapy at one of our local hospitals. It is a requirement of these programs that the patients reach certain goals in a particular time frame. Either Tom did not reach the goal or his insurance refused to pay for more therapy, or maybe both happened. His mother called Team Savannah because she heard from a physician that we work with people that have disabilities. I told her that I did work with Special Olympics Athletes, but that I had not worked with anyone that had a brain injury. I was willing to try! It is characteristic of people with brain injuries to have short term memory loss. From the time Tom met me, he never forgot my name. That was a highlight that I will never forget. Tom’s mother referred another man, Frank Albright. Frank also had a brain injury due to an auto accident. Frank’s mother called, she was crying, and she said her son had been turned out of therapy and asked if we help him. Frank was paralyzed on his left side. I really did not know what to say. What could I do for this man that could not move his left side? I would certainly want someone to help if it were one of my sons. When I met Frank, I never questioned what I would do with him or for him again. There was and is nothing he won’t try to better himself and to help others. From that day forward I realized that there was an entire population of people that had no where to go for physical exercise. It is the belief of Abilities Unlimited that each person has their own time frame for reaching goals. The program builds that person up today, so they can face the many tomorrows that we all have. We have also added great success with the Chatham County Exceptional Student program. We coach numerous students with mental, physical and emotional disabilities. We have coached as many as 100 students from middle 34 Something Special www.somethingspecialmagazine.com

to high school age. We were coaching eight classes weekly, each of which is about an hour in length. Our goal for these students is to strengthen all muscular areas to ease pain and depression and increase flexibility and mobility. We strive to improve the student’s ability to perform daily tasks with little or no assistance. As a perk, when the kids do for themselves, they FEEL good about themselves. The Presidents Council on Sports and Fitness has allowed us to write workouts for our participants and we had about 200 disabled participants receive the Active Life Style Award. The Special Olympics Power lifting program has grown from 5 to over 30. These athletes train twice a week for 1 ½ hours each time year round. Abilities Unlimited has one of the largest, if not the largest, Special Olympics Power lifting Teams in the State of Georgia. One evening I received a call from one of the coaches in Atlanta that asked me how I enrolled so many athletes. I just told him word of mouth because that’s how it started and it has grown. The staff and I really take a personal interest in all of the athletes and participants. Last summer we were invited to take part in our first international event, the Pan American Power lifting Championships. Like the Olympics, this championship made 10 slots for North American athletes with disabilities. 5 members of the North American team were from Abilities Unlimited. The most important aspect of these programs has nothing to do with the amount of weight lifted but more about the individual. The friendships they make, the life skills they learn and the independence and feelings of success are what we strive to give these beautiful people.

{ Our Staff }

Full-Time Staff Rhonda M. Langford, Executive Director Jim Chaplin, Assistant Director Part-Time Staff Billy Bateman Catherine Hodges Jessica Vogel Travis Storey Sarah McGalliard Mark Schreiber

Contact Us: Phone: (912) 351-3504 EMAIL: RLange58515@aol.com WEBSITE: ausav.org ADDRESS: Paul Anderson/Howard Cohen WeightliftingCenter 7232 Varnedoe Dr. Savannah, GA 31406

(This is a Chatham County Georgia facility and has wheelchair accessible equipment. ) Photos: Emmaline Routon

By: Dana Lee Smith, MT-BC

Photo: Kristina Laygo

Music therapy can address a variety of goals during treatment. Sample goals that can be addressed are as follows:

Facilitate learning readiness & academic objectives Increase appropriate social interactions Increase on task behavior Increase communication skills (verbal and nonverbal)

Facilitate sensory stimulation Increase self-esteem Facilitate positive interaction Facilitate self-expression

We all know the power that music has in our lives. Many of us remember songs that accompany certain periods in our lives. Music has the power to make us laugh or cry. Music therapy is a profession that combines these powerful elements into a therapy that can often elicit unique outcomes. Music therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. Music is used therapeutically to address behavioral, social, psychological, communicative, physical, sensory-motor, and/or cognitive functioning. Because music therapy is a powerful non-threatening medium, unique outcomes are possible. Music therapists are trained to asses needs, design goals, create treatment plans, and document progress. For the past 12 years, I have been working as a music therapist in the coastal empire area. I have worked with a variety of clients with a diagnosis on the autism spectrum and various other abilities. It is thrilling to see how music can help to facilitate positive changes. It is exciting to see children who are withdrawn verbalize or sign “more” to communicate their desire to play the drum. I have often listened in awe as I’ve heard client’s sing responses during “Hello” songs or imitate singing sounds. I am always amazed when individuals smile with enjoyment as they realize they are in control of music making and they have their first positive music making experience. It all happens through the power of music!

To Learn More... About music therapy and the services that are available, please contact: Music Links: Connecting Mind & Body Dana Lee Smith, MT-BC 912-665-1377 danalee@planters.net 35 Something Special www.somethingspecialmagazine.com

Features The

Features

Amazing,

Inspirational Jennifer McGee

By: Avis Coleman

She is a working mom with a high stress job. She’s studying for her doctorate in counseling psychology. She has four active children. Three of them have Autism. And she’s a tireless advocate for other parents of children with special needs.

{

Unbelievable? Amazing? Inspirational? Yep. All of the above.

}

Her name is Jennifer McGee. She and her husband, Matthew, were blessed with Catherine (13), twins Connor and Carson (8) and Abby (7). The three older children are at different levels on the Autism spectrum. Catherine is the most affected. She has Hypotonic Cerebral Palsy. She is g-tube fed, moderately intellectually disabled and is more developmentally delayed. Catherine reads on a third grade level and has severe social issues. Interaction with others is difficult for her because she doesn’t speak well and is difficult to understand. She requires constant supervision for her safety and for assistance with daily needs. Jennifer’s twins, Connor and Carson, are higher functioning. The eight year olds are entering the 3rd grade with special support in the classroom. They have difficulty making friends and interacting with others, especially outside the family. Abby, the youngest, is the typical 7-year-old. She’s rambunctious and has proven to be a challenge in her own right, “because she actually talks back,” laughs Jennifer. Her personal experiences and her professional knowledge have made her the “go to” person for parents of special needs children throughout this region. Jennifer’s undergraduate degree is in education with a major in speech language. She chose this path long before she gave birth to a special child of her own. “There’s a definite amount of irony here. I think that’s what enables me to do the trainings and be a mediator for families,” says Jennifer. “Having been a professional first and familiar with the system gives me an insight. Other parents with, let’s say, a degree in business would have to learn a whole new system and way of doing things. That’s what helps me do my job. I have learned to communicate and understand others so needs are met.” 36 Something Special www.somethingspecialmagazine.com

Jennifer is an Advocacy/Education Specialist at the Matthew Rearden Center for Autism which is a facility dedicated to the needs of children with Autism and their families. Her colleagues and her clients say she is a godsend. “Jennifer has volunteered to go with me to my son’s school and sit in on our IEP (Individualized Education Plan) meetings and offer suggestions to his teachers,” says Alicia Johnson (Michael’s mom). “She has also suggested that I take my son to a pediatric gastroenterologist to help him with his stomach issues. It just never dawned on his doctor to recom-

mend that.”

Matthew Rearden Center Executive Director, Helen Waters, agrees that Jennifer has that special gift that makes parents feel comfortable. “She gets the calls from parents of a child who has just been diagnosed,” says Helen. “These parents see their hopes and dreams for that child altered dramatically. They are in an emotional state. Jennifer is calm, well spoken and basically unflappable. She helps them through, partly because of her professional expertise but also because she’s a mom with three children on the Autism spectrum herself.” The IEP is daunting for new parents and Jennifer’s job is to interpret this complex federal law and to negotiate and advocate on behalf of her clients (the parents and the child). Her role is to see that the law fully represents the child’s best interest. She works to prevent any conflicts from forming an adversarial relationship between the parents and the education providers. But that’s not all she does for the Matthew Rearden Center. She also organizes workshops that bring speakers here from across the country who wouldn’t normally come to Savannah. These are the experts in all fields related to special needs. Some of the topics involve organizational techniques and creating structure in the home. They may offer simple, practical tips that parents can take home with them and use that day. Her boss says that of her many roles, Jennifer has her greatest impact when she interacts directly with the parents in that quiet, confident manner of hers. “It is very comforting and helpful to parents who know they are working with someone who is walking the walk,” says Helen. “They may be at different stages. They may have just learned about their child. They may have hit a bump in the road. They may need help talking to their child’s teacher. Whatever their need, it’s such a comfort for them to work with

Jennifer, and her husband Mathew, have four children, three of which are affected by different levels of Autism. someone so professionally well-versed, who understands what they’re facing and knows how to handle whatever comes along. She’s faced it all personally.” And “facing it” is what she has done and what she does every day. During her early months and years of motherhood with children with Autism, Jennifer learned new ways to communicate with these hard-to-reach children. She learned how to operate a g-tube to nourish her first child, how to brush her child’s ultra sensitive teeth, and how to find their potential in spite of their limitations. “Catherine likes to swim and to shop like a typical 13-year-old,” laughs Jennifer. “She loves music. She has learned how to go on the computer and look things up on YouTube. She needs extra support in the classroom setting and is starting Middle School this year. There aren’t as many opportunities for her but she still manages to enjoy a lot of the things girls her age enjoys.” The boys, Connor and Carson, have found their interest in a big way and it came about because of Jennifer’s tireless determination. “We had tried to get the boys into Tae Kwon Do, but the director was hesitant about taking them both in his class,” recalls Jennifer. “Their little sister, Abby, had been taking dance and they had been to her recital and loved it. When the boys said they wanted to try it, I asked the teacher if she would consider them and she agreed to take them on.” Connor and Carson not only did well in dance, they thrived! The twins started participating in public performances that first year. Articles have been written about them in local magazines and newspapers. Other families of children with disabilities have signed up as well and Jennifer has helped the teacher become better equipped to manage these children. Connor and Carson have competed nationally along with Abby, performing with the team in Orlando this year. Jennifer has chosen to cut out much of the therapy programs

for her children. “I didn’t want them growing up in waiting rooms. I utilize my therapist friends. We have a pool in the back yard and a swing set,” says Jennifer. “When my oldest needed to work on balance, we built a balance beam. We incorporated therapy into their play so they could focus on being kids.” The speech therapist comes to the house twice a week. Even though Jennifer’s undergraduate background is in speech therapy, she says she doesn’t “sit around and do speech therapy with my kids. I know I want more spontaneous language and I know how to incorporate that into bath and dinnertime. I pick goals to work on at home. I use structure and organization to promote independence in the kids.” Some of Jennifer’s tricks include visual references. The boys’ dressers have pictures of what goes into each drawer. They’re learning how to fold laundry and put it away and they have learned to get dressed in the morning on their own. Catherine didn’t start walking until age three. Jennifer pasted pictures of a gold fish on the container at the bottom of the refrigerator. When Catherine wanted something like that favorite snack, she would crawl over to the goldfish picture and point to it. Every form of communication was a success for the children. Every step towards independence was another victory. Jennifer is quick to acknowledge the “tag team” that helps make her life run so smoothly. She and her husband, Matthew, have a running joke, “We hear the divorce rate is higher with twins and higher if the parents have children with autism. So, technically we shouldn’t be talking to one another,” she laughs. “Seriously, we have to work together, not only to manage our family but for each of us to pursue our own personal interests.” Jennifer’s personal interest was to return to school to earn her doctorate. That required more time from Matthew and more juggling. He officiates high school wrestling. It takes regular family meetings to schedule each other’s activities especially now that the children are older and have their own events that require parental help and involvement. “Carson played football last year. He had difficulty understanding the game so my husband had to be there,” said Jennifer. “Matthew had to help the coaches help Carson figure out how to play. He did learn to tackle the person with the ball but he doesn’t understand what the rest of the players are doing on the field. So, they made him a safety and he knew to tackle. That was a way to find what works for him.” Besides Matthew, Jennifer is blessed to have the support of her parents and her sister who all live gloriously nearby. Those 37 Something Special www.somethingspecialmagazine.com

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Special Places

Special Places to Go & See

“I didn’t want them growing up in waiting rooms...We incorporate therapy into their play so they can focus on being kids.” family members are quick to babysit or to carpool the children to activities. Jennifer and her children have been such an inspiration that her sister, Joanna Hint, went back to school to learn ABA therapy (Applied Behavioral Analysis) and also works with children with special needs and their families. “Jennifer and her children have made me a better person. I don’t take anything for granted now,” says Joanna. “Life is about the moment-each and every small moment. It’s not just about the big picture. These children live in the ‘right now’ and how ‘right now’ affects them. They don’t think about a week later. They don’t worry about things that could hurt them or benefit them later in life. Those little rewards they show me, every little sign of progression, that’s what keeps me going. Those little rewards make it all worth it.” Jennifer’s always-understanding boss works with her crazy schedule and that flexibility helps Jennifer meet her children’s and her clients’ needs. “She amazes me that with all she has going on at home, she will tell us, ‘If someone calls for me, give them my cell number,’” says Helen. Joanna sees every day what her sister means to these parents, “A lot of parents are lost until they meet Jennifer. She starts advising them and they know she has the education background. Then they find out she lives it at home every day! They gravitate to her and trust her.” The Matthew Rearden Center cites many success stories thanks to Jennifer and other devoted staff members like her. One graduate from the program is now a student at Savannah Tech and volunteers at Effingham hospital. “That’s what I like to see,” says Jennifer proudly. “The parents of this young man are ecstatic about his accomplishment. I love it when the parents of the young children with severe behaviors are aiming higher for their kids. It’s not always like that. Some parents of special needs children are geared to aim low. We need to reverse that. We need to let these children rise to the occasions. We will be surprised what they can do given the appropriate support and the right opportunities. “I want both professionals and parents to start seeing children in a positive light. When you talk about Autism, ask about the growing numbers. Talk to parents and find out about their struggles because of lack of resources and lack of money. But, on the other side, so much focus is on what children can’t do and what’s not available for them. Very few stories celebrate the successes of these children. We need more awareness of what they can do with the appropriate support so they can be successful. Look at what the children can do at the dance studio. That studio had no experience with children with special needs, but they took a chance and were very successful and now they are an example to other organizations. They can open doors and provide opportunities. “My children have been a huge influence on me and the 38 Something Special www.somethingspecialmagazine.com

We all get those breaks in the fall, some last for a week, others for just a matter of days, BUT the kids are off routine and most of us find that we need to go! That being said, we found a few great spots that are local, and a spot that is not so local, but a doable drive to write about and for you to GO to. Here is our list: Connor, Abby, and Carson

decision I made about myself and my future and how I look at the world. Catherine has been my greatest teacher. I feel I am better person because of her and her brothers and sister. If you’d have asked me fifteen years ago what my profession would have been, it would have never been like this,” admits Jennifer. Many, like Alicia Johnson, are grateful to Jennifer and the road she’s traveled, “She can truly relate to parents of children with any disability, especially Autism. I do and have recommended her to friends. Jennifer is someone I plan to keep in our lives for a very long time. She is amazing!”

Lake Mayer, Montgomery Crossroads, Savannah, GA

“

My children have been a huge influence on me... and how I look at the world.

”

-Jennifer McGee

Catherine & Matthew Photos: Kristina Laygo

Lake Mayer has an older playground, so I would venture to say there isn’t any playground equipment that is wheelchair accessible, BUT the scenery is great. If you are up for a walk moms, push the wheelchair along and walk around Lake Mayer. There is a feast of wildlife for the eyes. Many ducks, birds, turtles and fish are all around. Turtles sunbathe on the branches near the water, ducks are just asking for those day old bread pieces (so save them- low cost entertainment to feed those ducks), and there are birdhouses along the back of the Lake to look at. Along the track, there are markers so you can see how far you have walked. The track one time around is over 1 and ¾ mile, so you are getting in some exercise while discussing the wildlife. The park offers many activities and events. There is a covered Pavilion, and a community room located in the middle of the park. Picnic tables are all around the middle of the park. If you want to throw the ball back or kick the soccer ball, there is room to do that as well. The playground also has a rock climbing wall for big kids and a much smaller playground for the little tykes. Let your ADHD kid run wild at the playground, and bring snacks so he/she can eat at the park then go home. Changing into a fresh shirt before heading home seems to relax them (that is if they don’t fight you- my autistic son would NOT like to change his shirt). You may get a nap out of them today- NAA!

By: Katrina Laygo

The University of Georgia Aquarum, Marine Education Center and Aquarium, Savannah Georgia

By: Karin Paquin The Marine Education Center and Aquarium’s (MECA) mission is to develop the public’s understanding and appreciation of the numerous coastal marine environments in the state of Georgia, and to foster respect for the beauty and complexity of these environments. The educational facet of the UGA Marine Extension Service, MECA provides educational programs both for organized groups and the general public. These include formal groups (school, scout, civic, e.g.), Saturday Explorations at the Aquarium (SEA programs), “Mommy and Me” toddler programs, and outreach education. MECA has a wheelchair accessible public aquarium with 14 salt water exhibit tanks that house over 100 species of marine animals, an interactive touch tank area allowing visitors to explore different textures of marine animals and a museum exhibit area displaying artifacts, fossils, bones, and shells. Visitors can also enjoy a walk along the beautiful, wheelchair accessible na-

ture trail and wildlife viewing pier that extends over the salt marsh to the Skidaway River. Something great to get kids their Vitamin D, take them for a walk! Point out birds! The aquarium is in a new phase of translating ongoing research in the coastal community into interactive aquarium exhibits that explain ecological and economical importance. The Education Department is incorporating this research into informal education programs that meet both state and national standards. These 39 Something Special www.somethingspecialmagazine.com

Special Places programs have been adapted to meet the needs of individual groups that come through the facility. One example of such a program is the deaf and hard of hearing classes funded by COMCAST. Like most of the activities at MECA, this program is a hands-on experience with lessons designed to provide a realistic approach to learning how scientists study the coastal environment and its animals. Support from COMCAST provides deaf and hard of hearing students with scientific equipment, multiple field trip opportunities such as a day of trawling on the Research Vessel Sea Dawg, and materials to create scientific journals to record their experiences. Call us today about your group as I am sure we can make some accommodations. The public aquarium, museum and nature trail are open Monday through Friday from 9 AM – 4 PM and Saturdays from 10 AM – 5 PM. Admission to the public aquarium and museum is $4/person (ages 13-54) and $2/person for children ages 3-12, seniors (55+), and active military with ID. Admission is free for children 2 years and younger. The facility is closed Sundays and (UGA) holidays. For more information about programs and hours of operation, visit www.marex.uga.edu/ aquarium or call (912) 598-2496.

Walt Disney World, Orlando Florida I could probably write forever about Walt Disney World. My

family and I have been going to that park since my oldest son Josh was eighteen months old. From my experience, the fall is a wonderful time to visit Disney because the temperature is more pleasant. The hours 40 Something Special www.somethingspecialmagazine.com

Special Care for You

are less, but that is okay, because you can actually get your beauty sleep! What I didn’t realize was how wonderful Disney is to special needs families. The first piece of advice I can give you is to make reservations in advance by calling 407WDISNEY. You can also make reservations by calling AAA if you are a member, or your travel agent of choice. Stay at a Disney property, and ask for special rates- as they do have promotions that run frequently. Make sure you mention you have a special needs child, so they can make accommodations for wheelchairs or whatever you may need while staying on property. All of the Disney properties have a bus system that will transport your family from the resort to the parks, and the buses are handicapped accessible. Once in the parks, I have seen people with special needs children and adults alike with their families (up to six total), access rides and attractions a little easier via a guest assistance card. You can get a Guest Assistance Card by visiting guest relations which is located at the front of all the Disney theme parks. I recommend bringing at least one document that states your child’s condition from a doctor or school. For the hearing impaired, Disney is once again earning all A’s. The Walt Disney World Resort offers Sign Language interpretation services for guests and even cast members who are deaf or hearing impaired at various locations and events throughout Disney. This includes over 20 different theme park attractions each week, including Cinderellabration, Festival of the Lion King and others. For these shows and events, please call a minimum of 7 days in advance - 407.824.4321(voice) or 407.827.5141 (TTY). Guests will be contacted prior to their visit with list of show times, names and dates of the interpreted performances. Interpretations are also available at the dinner shows at the Polynesian, the HoopDee-Doo Revue, areas at Downtown Disney Pleasure Island, and some special events like “Night of Joy” at the Magic Kingdom. Guests need to call the above number a minimum of 14 days in advance for special events and dinner show interpretation. Guests will be contacted prior to their visit to verify arrangements. In addition to sign interpretations, Disney also has a handheld assistive device for guests with visual and hearing disabilities. The device is small, and for the hearing impaired it provides amplified audio, and the handheld captioning enables guests to read captions while at specific theme park attractions. For the visually impaired or those that are blind, this handheld device provides narrated information about key visual elements in attractions such as scene changes, actions, and works with the existing show audio. The purpose of the device is to make the guest feel actively involved in the experience via descriptions. This device is available for free at Walt Disney World Resort and Disneyland Resort theme parks. For further information about services for guests with disabilities, guests should visit www.disneyworld.com or contact WDW at 407.824.4321 (voice) or 407.827.5141 (TTY). Photos: Kristina Laygo Disney Photo: http://themerica.org/blog/field-excursions

Hair Tips for Time Crunchers By: Genevieve Routon, Hairstylist (Mom to Hugh)

As any busy parent will confirm, hair and skin care falls somewhere in line with learning Japanese as a second language and mastering the art of underwater basket weaving in terms of priorities. The following are some tips for maintaining style sanity. Find a stylist that is compassionate to your lifestyle challenges. Someone who comes recommended by other busy moms(and dads!) with your type of hair and will not push unneccessary products or services. For many people, long hair is easier maintained. Short hair requires frequent salon visits (and often daily styling) it becomes clear that shorter is not always better. A good cut will last a long hair client 2-3 months if necessary. The key to an enviable (or at the very least not unsightly) head of tousled locks is in proper and consistent conditioning. A clarifying shampoo is wonderful once a week but gentle cleansing is important the rest of the time. One time saving tool is the ever popular flat iron. Even on predominantly straight hair, this is a wonderful styling tool. Eliminate the exhaustive blowdrying of yore by putting a leave in conditioner or hair oil throughout hair, allow to air dry, then flat iron and voila! Smooth shiny tresses in no time. A dry shampoo may be used to preserve the the flat iron style and you have saved yourself days of the monotonous routine. Dry shampoo cleansing also adds a little matte volume to the root of the hair giving your lid an improved “look”. Ponytails can be very contemporary and stylish if done right. It has become my “go to” look during a busy week. Start by smoothing or curling the ends the hair with a flat iron or curling iron. If volume is an issue, then tease hair just at the root following sections through the crown of your head. Brush as you normally would and pull into a band. One way to keep the look fresh is to have your stylist cut a side sweeping bang and face framing fringe. If your bangs tend to fall flat to your face, tease underneath to create volume and movement. Another great timesaver: keep hair in the ponytail and shampoo only your bangs and fringe. Your hair will always looks fresh in 10 seconds or less! To style, simply pull hair back in a band or twist into a favorite clip. Fluff bangs with fingertips and loosen fringe to feminize the appearance. You can use a flat iron to smooth unruly bangs. I keep a flatiron with a plug in car adapter in a beauty kit in my car. Its like a first aid kit, and equally important! I can leave the house with wet hair and no makeup. My car becomes a rolling vanity! I do not condone doing any of this while operating your vehicle! Park your car in the parking lot, and make sure the area is safe, lock your doors, and

fix your hair. Do not leave wet hair up in a clip all day. This may encourage the presence of MILDEW (icky) and may contribute to scalp conditions. And PLEASE…Ladies NO SCRUNCHIES! They can aid in the mildew and well it is time to go. We all secretly love them but they have gone the way of the DoDo bird and we must with steely resolve send them to their rightful beauty graveyard.

“The key to an enviable...head of tousled locks is in proper and consistent conditioning.”

41 Something Special www.somethingspecialmagazine.com

Special Care for You

Special Care for You Spending a lot of time at the doctor's office or hospital? You need a versatile style that helps you feel good about yourself.

Before Simple Hair for Mom

Fitness for the

Fatigued, Frazzled, & Frustrated By: Carrie Smith Personal Trainer and Presenter for Interactive Fitness Trainers of America (IFTA)

“Oh, come on?! With all I have on my plate…with everyone and everything pulling me in a hundred different directions…I’m supposed to eat healthy AND exercise regularly? I’m fortunate these days if I’m able to inhale a stale Poptart while calling out last night’s vocabulary words to my youngest son and hunting that insidious lost sock for my ‘tween’ daughter.” Sound familiar? Even without a special needs child in your life, finding time or desire to pursue any level of fitness just seems impossible. Is it even possible? Maybe not to get into the best physical condition of your life or compete in a world class triathlon…but is it possible to take small steps toward general overall health and fitness? You can take steps to prevent the typical muscle loss that comes with lack of exercise. You can maintain your cardiovascular capacity, flexibility, and balance. As cliché as it sounds, the key is to start with small steps and build a firm foundation from there. So, which small steps do you take to achieve your goals in terms of health and fitness? Any effort, no matter how small, needs to start with a plan! Make every effort to carve out a few extra minutes somewhere in your day to create a plan. DON’T wait for “someday” to roll around. Identify your goals! You have to know where you want to go, what resources you’re going to need, and who may be able to help. Include a ‘plan B’ for when life throws a monkey wrench into ‘plan A’. Here are a few more ideas on how to set your goals and stay with them:

Think small! Trying to do too many things at once is a good way to lose

focus and stay frustrated. Try focusing on one goal at a time. Use a small goal that you know you can do each day for the next two weeks, like squatting a set amount of times each day or doing pelvic tilts when you’re brushing your teeth. Build that first habit to boost your confidence and then pick up speed with your next small goal.

Write things down!

Model: Blake Smith McGowan

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After

Give yourself a deadline because deadlines can turn wishes into goals. The act of writing down your goal is powerful enough to keep you committed and focused. You might try to find a visual to represent your goal or how your life will be different once your goals are met. Seeing the possible results can be very encouraging. Also, remember that memory can be pretty selective. It conveniently forgets that extra cookie while remembering activity as more intense than it really was. The only way to know for sure is to track goals with a checklist or journal. Make your goals very specific. You will leave yourself too much wiggle room if you don’t make your goals specific and measurable. Saying you will get ‘more’ exercise is too vague. Instead, say I will squat 30 times a day or I will get up and change the TV channel manually for a week. Don’t use the words ‘never’ or ‘always’ because they are examples of black and white thinking. An attitude of ‘all or nothing’ can easily discourage you and lead you 43 Something Special www.somethingspecialmagazine.com

Special Care for You

Homes & Gardens

back into bad habits. Journaling your progress as you work on your goals can be enlightening and give you clear, visible accountability.

Think PROGRESS not PERFECTION. Expecting perfection is a sure fire way to fail. Persistence is

the key. Accept failure as not fatal and success as not permanent. You may not make your goals in your first few tries, but instead of beating yourself up learn from whatever mistakes were made and use them to rework your goals or to change your methods. Find a ‘goal buddy’ or two. Trying to make healthy changes in your life is difficult enough, but trying to do it alone can be much harder. People that can help are all around you! Network with other parents of special needs children! Look in your own family, people at work, people in your neighborhood, or people at church. Technology has developed quite nicely and allows us to connect in ways never before possible. Use it to stay connected to people who are like minded and can help you stay motivated. Most of all, remember that nothing stays the same. The stresses that you are encountering now will change. They may increase, decrease, or morph completely; but you can be sure that they won’t stay the same. There are some things that you can control and many things that you cannot. Examine your thoughts and see if you realize which are which in your life. You cannot control people, places, or things. You can only control yourself, your thoughts, your attitudes, and your behavior. Decide where those ‘property’ lines are in your life; get to work on what you CAN change; and let go of those things that you cannot. All behaviors start with the ‘seed’ of thoughts. Changing your thinking is the most important step toward changing your behavior!

Warm-Up

Tap Toes

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Get Outside and EXERCISE! Enjoy the day and soak up some Vitamin D! It is a good idea to go outside in September, since the weather is a lot more pleasant than, say, JULY! Not as hot, not too cold, so get up and get out and work out!

Warm-Up

Start with a warm up by breathing in and blowing out. March slowly for 16 counts. March wide for 16 counts. March for 8 counts, then march 8 counts wide. Repeat the latter four times. Lift arms over head breathing in, bring arms down for four counts breathing out. Tap your toes on each foot for 30 seconds to warm up your shins.

Walking Work Out

Begin with a slow walk for five minutes. Pick up the pace on the sixth minute. Walk at a brisker pace for five minutes. Slow down and walk for five minutes. Repeat the sequence twice. Add in arms. Walk at a quick pace, swinging arms back and to for at least ten minutes. Slow down for five minutes. Repeat sequence using arms again for two times total, equaling thirty minutes total. Cool Down. March out as we mentioned in the WarmUp. Stretch legs out! Waa-lah, you just exercised an hour!

March Wide

Community Awareness:

Brisk Pace

3 6

Lift Arms

Quick Pace

Emergency Contact Handout Model • Name of child or adult • Current photograph and physical description including height, weight, eye and hair color, any scars or other identifying marks • Names, home, cell and pager phone numbers and addresses of parents, other caregivers and emergency contact persons • Sensory, medical, or dietary issues and requirements, if any • Inclination for elopement and any atypical behaviors or characteristics that may attract attention • Favorite attractions and locations where person may be found • Likes, dislikes--approach and de-escalation techniques • Method of communication, if non-verbal and uses sign language, picture boards, written words • ID wear jewelry, tags on clothes, printed handout card • Map and address guide to nearby properties with water sources and dangerous locations highlighted • Blueprint or drawing of home, with bedrooms of individual highlighted

To ensure safety and lower risk for a child or adult with autism, parents and care providers will need to become proactive and prepare an informational handout. A common problem among families with special needs or autistic children is that these children tend to wander. Tragically, children and adults with special needs and autism are often attracted to water sources such as pools, ponds, and lakes. Drowning is a leading cause of death for a child or adult who has autism or special needs. Wandering can occur anywhere at anytime. The first time is often the worst time. Another concern is preparation in the event that you become incapacitated or injured while caring for a person with special needs or autism at home or in the community. An informational handout should be developed, copied and carried with you at all times—at home, in your car, purse or wallet. Also circulate this handout to family members, trusted neighbors, friends and co-workers. The handout will also come in handy if you are in an area other than your neighborhood and are approached by the police. If wandering is a concern, contact law enforcement, fire and ambulance agencies. Ask your local 911 call center to “red flag” this information in their 911 computer data base. For Chatham County, call the Chatham County Sheriff’s Department and let them know you would like to register in the computer that you have an special needs or autistic child. They will let the above agencies know of a special needs or autistic child in the home should you need their services. This is key if you have a child in a wheelchair as well, or any other disability that would hinder them from getting out of the house during an emergency. Another thing, most parents don’t think about, is to put a sticker on the door that identifies that a special needs or autistic child lives in the home, that way, should there be a fire, the fire fighters will know to keep looking if possible (also put one on the child’s window- so they know where their room is) as the child might be nonverbal and won’t answer when their name is called. Again, I would do this for any disability, if they couldn’t get out of the house on their own. Dispatchers can alert patrol officers about your concerns before they arrive. If we provide law enforcement with key information before an incident occurs, we can expect better responses. Contact Information: Dennis Debbaudt 2338 SE Holland Street Port St. Lucie FL 34952 PHONE: (772) 398-9756 EMAIL: ddpi@flash.net WEBSITE: autismriskmanagement.com The following is reprinted from autismriskmanagement.com with expressed written permission. 45 Something Special www.somethingspecialmagazine.com

Celebrate the joy of reading, the power of the written word and the magic of storytelling! Meet children’s book authors and illustrators from around the country.

Homes & Gardens

Alert your neighbors The behaviors and characteristics of autism have the potential to attract attention from the public. Law enforcement professionals suggest that you reach out and get to know your neighbors.

To help make sure your neighbors and law enforcement officials know that an autistic child is in the home, place a sticker in the window to alert them of your child.

• Decide what information to present to neighbors • Plan a brief visit to your neighbors • Introduce your child or adult or a photograph This approach may be a good way to avoid problems down the road and will let your neighbors: • Know the reason for unusual behaviors • Know that you are approachable • Have the opportunity to call you before they call 911 Knowing your neighbors can lead to better social interactions for your loved ones with autism.

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