Read past FOCUS newsletter articles

Malik
By Cassandra Stuckey-Moore

The proudest day of my life was December 15, 1994, the day Malik Robert Moore was born at St. Luke Roosevelt Hospital in New York City. After nine months and a week, his strong cry was like music to my ears! I developed gestational diabetes during my pregnancy, but had no other complications. Malik was the greatest accomplishment of my life.

Things were normal for the first two months, but soon I noticed that Malik was not progressing. He had no muscle strength in his arms, did not react to different sounds, and constantly regurgitated. Doctors reassured me when I questioned them, saying, "All children throw up and progress differently."
I continued to search and ask questions. We were referred to a pediatrician by Dr. Brian Delaney, who is like a father to my husband Shawn and me. This pediatrician then referred us to specialists for a complete evaluation, which included a hearing test, endoscopy, and a neurological exam. The results were initially good: his hearing was normal and his reflux could be treated with medication. However, after the neurological testing, the neurologist said the “A” word for the very first time. My whole body went numb after I heard the doctor say, “Mrs. Moore, your son has autism.“ She explained that a lot of autistic children grow up to lead “normal lives." I was shocked and my mind went blank...... I really can't say I remember what else she said. My mind spun out of control trying to understand how and why this happened to us. From that point on, our lives have been consumed with physical, occupational, and speech therapies.

My husband and I told ourselves, "This isn’t so bad. He’ll get the help he needs to live as normal a life as he possible." But, a funny thing happened on the way to a normal life for Malik. He became our little secret. Our lives became very guarded. We allowed no one but my parents and my brother to enter our lives. We feared people would find out about Malik and would not understand his condition. We became Malik’s little world.

I told myself that I was not ashamed of him, that other people wouldn‘t be able to handle it. They wouldn't know how to react when he behaves inappropriately, when they realize he’s nonverbal, or when they notice he still wears Pull-Ups. At work, when people talked about their kids, I went to the ladies room. I made excuses why he never answered the telephone or had play dates. I became so engrossed with my lies that I started to believe them.
My extended family is quite large, with a host of aunts, uncles and cousins, and has always been my source of solace. We traditionally gathered for picnics and holidays, but somewhere along the way, Shawn & I convinced ourselves that things would be easier if one of us stayed home with Malik rather than constantly trying to explain his behavior and his condition. We stopped going to family gatherings as a family. My uncle noticed that I came to gatherings alone and said to me, “You know, we want to see Malik, too. I know it’s difficult for you guys, but we’re family. We are willing to help you.”

At that point, I realized that I was living the lie with my family. I took a long, hard look at myself and the decisions that Shawn and I made about Malik. I found aunts and uncles who were willing and could help take care of Malik. Most importantly, they enjoyed spending time with Malik, just as much as he enjoyed spending time with them! Eventually, we let go of all those preconceived notions and just let everyone love Malik. It changed our lives.

I finally began to see that Malik was not “the terrible thing that happended to the Moores.” Instead, he is a smart, beautiful 11-year-old boy who loves video games, reading, (yes, reading!) bowling, and NASCAR.

Looking back over our journey, we have come so far. I can truly say I overcame my greatest obstacle…ME! I was my greatest hurdle. To become the best parent I could possibly be, I had to let go of all my shame and guilt and allow my blessing to flow and be received.

I believe God does everything for a reason. God has blessed my family with this little boy who is unique, loving and special. And I am so grateful. We are truly blessed! Our Malik is a joy!

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Making the Connection and Finding Answers
By Candice Lange

Our son Corey was diagnosed with hypotonic cerebral palsy on his second birthday; later, he was diagnosed with epilepsy and two other conditions. It’s hard to believe that he just turned 8 years old, the birthday that we were told his disabilities would be so mild that no one would ever know he had special needs. Corey’s needs are indeed mild, but not invisible. He wears a patch for his eye, AFOs, just developed simple partial seizures and continues to need hours of speech and physical therapies. He loves Special Olympics and learns best in a small, slower-paced classroom.

For so long, I felt all alone with Corey’s diagnosis; no one was quite like him. But not long ago I spoke with a mom whose son’s MRI and diagnosis are similar to Corey's. What an incredible feeling! I laugh as I think of her telling me things about her son; it was if she were talking about Corey. We’ve exchanged family pictures, stories, laughter and sadness; we even hope to meet sometime soon. The road to finding this mom has been an amazing one.
In helping an acqaintance investigate her daughter’s diagnosis, I learned of the web site www.clinicaltrials.gov. Through the web connection, her daughter was accepted into a clinical study in another state, flown to the clinic with her whole family, and treated royally. She and her daughter now fly to the study several times a year - all at the expense of the clinical trial. She has learned so much about her daughter's condition, and her daughter is receiving the most current care in the field.

After hearing her story, I typed in clinicaltrials.gov (no www. needed anymore!). I did a specific search for "children, seizures" and found 65 trials being done worldwide. None of them were of interest to me, for various reasons (different brain malformations, study requirements or medication trials) so I continued searching, using other words and found the clinical trial that brings me to this story.

Dr. Dobyns at University of Chicago was conducting a trial of children whose issues were similar to Corey’s. In May 2006 he asked that we complete consent forms and send Corey’s MRI. When nothing happened for months, I discovered that the hospital hadn’t sent the MRI, only paperwork. (Tip of the day: When requesting records, make sure you have the right department! The actual MRI film comes from the Film Library, not the medical records release office!) Once the MRI arrived, Dr. Dobyns immediately reviewed it since we had already waited so long. He e-mailed me personally three days later. According to Dr. Dobyns, Corey has paracentral pachygyria, a very mild variant of pachygyria, which is a form of lissencephaly (which actually means ‘smooth brain’), found in only a few boys in the thousands of MRIs viewed by Dr. Dobyns. In his email, he included a note, written years ago, from a mom whose son also has pachygyria.

I asked for her contact information and emailed her immediately. The very next morning, I received that incredible call --- one of the best calls in my life. I felt all the pressure and stress that I had been holding onto just release. I felt that everything would be ok - at least for now. I should say at this point that Corey’s doctors here in Atlanta were supportive of our efforts to find out more about Corey’s condition. His neurologist had never seen an MRI like Corey’s so he supported my search. He also knew Dr. Dobyns. Once the ball started rolling, it really went fast!! We have so much to learn about this new diagnosis and yet part of me wants to wait until the next step. Corey will need two genetic tests to determine if his variant qualifies for this particular research study. Then I think I'll be ready to learn more about the right variant. Maybe there will be another study on clinicaltrials.gov that would be more helpful to Corey. Or maybe I've learned what I needed - the connection with the other mom. As she put it, "It is definitely nice to be part of a crowd - even though it's a small one!"

To learn more about a trial for you or someone you care about, see http://www.clinicaltrials.gov

To learn more about Dr. Dobyns, see http://www.uchospitals.edu/physicians/william-dobyns.html
To learn more about Corey and Special Needs Connections, see www.candicelange.com Making Connections and Finding Solutions. Candice is also the coordinator for the North Gwinnett/Mall of Georgia FOCUS Share Group.

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From the Editor….by Lucy Cusick

Sometimes we all move so fast that we don’t take time to think. In today’s world, value is seen in accomplishments. We are expected to do more, in less time. Our children with special needs sometimes teach us to slow down, to enjoy simple things and to value the things others take for granted.

When Josh was young, not yet diagnosed with cerebral palsy, we started at the top. We didn’t decide when he was a year old that we would only work on talking or walking or reading. We tried to teach him everything. As he got older, we started having to pick and choose what skills to concentrate on - should he miss reading to go to therapy? If he walked to classes, would he actually get there in time for class? Should we concentrate on algebra or on math that helps him function in every day life? These decisions were difficult to make; the dream that we could make everything ok - if we worked hard enough, if he worked hard enough, if we tried every therapy multiple times an hour - was hard to give up. When we decided to concentrate on academics, did we keep him from walking? Did we accept his physical disabilities too soon?

‘Acceptance’ is a difficult word. If we ‘accept’ our child’s limitations, are we giving up? When does the word ‘realistic’ start creeping into our minds? If our child refuses to ‘perform’ (don’t you hate that word?) a skill for a teacher or a therapist, how do you prove that they can? Children often ‘do more’ for the parents than they do at school....and sometimes they do more for a professional than they do for a parent. Josh quickly learned how to manipulate (another favorite word) the people around him so that they would either leave him alone or do his bidding. Every day was different - what worked one day wouldn’t work the next; behavior modification probably described my behavior more than his!!

Hey, I certainly don’t have all the answers. I only know that, for me, a certain amount of acceptance meant a great deal of enjoyment . When Josh was 4, if a therapist cancelled a session, I would have rescheduled. By the time Josh was 8, I was relieved when a therapist cancelled a session. We stayed home instead of fighting after-school traffic; we caught up on homework and had a real dinner, instead of the usual after-therapy scrambled eggs. My ‘acceptance’ didn’t prevent continuing to try new equipment, exercises, and medications; my ‘acceptance’ gave me permission to skip a week of therapy in the summer and go to the beach and do ocean therapy. My ‘acceptance’ made it ok to teach him self-help skills from his wheelchair instead of his walker; this acceptance gave him independence, instead of requiring assistance. My ‘acceptance’ helped me understand that Josh may not go to college, but he could be healthy, busy and happy, with a life that has meaning and value. And, in reality, what more can any of us really ask for?

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Equipment That Works
By Lauren Seidl

Last Christmas, we bought our 10 year-old son James a Miami Sun adult trike. I was so excited. I loved riding my bike as a child and wanted James to have the same experience. To find the right bike, I spent a lot of time doing research on the internet and discussing the various options with his physical therapists. When I decided what to get, I went to the local bike shop, spent a lot of time explaining what I wanted and finally got it ordered it. The bike shop got it, assembled it, and delivered it in time for Christmas.

When James first tried to ride it, he couldn’t keep his feet on the pedals – so we duct- taped his shoes to the pedals. This worked but wasn’t going to be a permanent solution as the tape ripped. So there was more research to be done - toe clips vs bike shoes. My husband purchased bike shoes with velcro closures that snap into special pedals. They work great!

It took James a few weeks to learn to ride the bike. The first challenge was getting the pedals to go around. After he mastered that, there was braking and steering. Don’t underestimate what it takes to get all of those things coordinated. Now he cruises around on the bike without any parental intervention. This has been amazing for him in many ways. Most importantly, it has given him the ability to interact with the other children in our neighborhood on the same level.

I’m sure everyone who attended the Under the Stars family fun weekend in August will attest to the fact that this bike is one of the best pieces of equipment we could have ever invested in for James. He rode it all over Camp Twin Lakes, racing Josh in his power chair, delivering messages from one FOCUS staff member to another, tracking people down and even delivering small pieces of luggage to various cabins during check-in.

There was another little boy with a trike at Camp Twin Lakes. It was called a Rock N Roll trike and had the ability to hand pump the bike in addition to pedaling. He used toe clips to keep his feet on the pedals which worked great and didn’t require special shoes.

Another family bought the same Miami Sun adult trike for their daughter from Eagle Sportschairs. They found them to be an excellent and affordable resource for purchasing a bike.

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Charlie, Church & The Waffle House
by Charles Schoen

When Charlie was born in 1995, Kathy and I came home with all of the normal dreams and expectations for our first child. Charlie was a good baby: he never really cried, he slept well and he ate heartily. We thought all was right with world. However, when we went to our 2-month check up, Charlie’s pediatrician said that Charlie should be pushing up with his arms and lifting his head up off of the mat. She asked us to come back in a month to check his progress. When we went back the next month the pediatric radiologist discovered that the band of fibers that connects the left and right hemispheres of Charlie’s brain was completely missing. This is a very rare condition known as agenesis of the corpus collosum.

Charlie is one of those kids who just lights up every time he sees you. He has been blessed with an attitude of unconditional acceptance of others. For those he knows well, he gives an excited shiver all over his body. It is like a puppy wagging from head to toe. While he doesn’t speak with words, he communicates using signs, gestures and touch to reach out to others. In fact, one of the games Charlie plays when 2 adults are next to him is to grab each of their hands and put them together as if to say ‘We are all connected, we are all friends.”

Charlie is 11 now, and he has taught us all much about life, love and enjoying others and their differences. God has used Charlie to teach us a lot about how He has used the disabled to reveal Himself to us and how He has used the disabled all through the Bible, from Abraham to Jesus, to bring about the redemption story.

As Charlie grew we didn't take him to the Church worship service much. We felt it was 'over his head,' that he might disturb other people, and that he just wouldn't get anything out of it. So Kathy & I ‘tag teamed’ worship services on Sunday mornings – I don’t have to explain that term to special needs families! But one Sunday we took Charlie and you should have seen him at the service in the sanctuary. He was so excited to be there and sat through the whole service quiet and paying attention to the minister and all that was on going. I have always known he loves the Lord, but I actually witnessed his love that Sunday.

Since Charlie was a baby, his favorite Video was Mother Goose Gospel, which is mostly songs with Mother Goose and kids singing about God, Jesus, and the Bible. During the sermon on Sunday, the minister talked about the Gospel, who Jesus was and wasn't, that he can meet all of our needs. Charlie sat in his wheelchair doing his "excited shiver" the whole time! I knew it was his way of affirming what he was hearing! Knowing his mental abilities about other things, I knew he heard and understood what the minister said. Earlier in the month I took him to see Barney (his other favorite video); he was more excited during the sermon that Sunday than seeing Barney up close & purple!

Charlie gets really excited about going to one other place: The Waffle House on Powers Ferry Road! He is the Mayor of the restaurant, and all of the staff there knows him. We go at least once a week just because he loves it so much; this is one of the few times that he shows pure excitement! When I saw that same excitement at church, I realized that I had failed him by not taking him to church. I always had a lot of different reasons, and I had judged his “God knowledge” on the same level that I thought his world knowledge is. But I found that he is more dialed into the worship of God than I am.

This experience revealed to me that our children with special needs should have the opportunity to be in church or synagogue and hear God’s word. I now realize it is as important to take Charlie to worship at church as it is to take him to what I had thought was important to him, Waffle House. How wrong I have been!

Having a church family and being actively involved in church is more important than we realize. Charlie may not be able to say it but he sure can show it! Our church (see below) has begun a program for special needs children. From now on, you can bet you’ll see Charlie in two places each week: at Waffle House and at church.

Peachtree Road United Methodist Church (3180 Peachtree Rd NW, Atlanta) has begun a class for special needs children with one trained teacher and one trained volunteer from 8:30 am to 12:30 pm every Sunday. This allows parents the opportunity to attend a worship service and a Sunday school hour. The class sometimes joins the other kids for singing in Sunday school or goes to children's moments in the Sanctuary. Parents complete an "All About Me" information sheet about each child. Siblings sometimes stay in the room too if they want. If you want to attend, please call the coordinators before your first visit. Coordinators are Betsy Lunz 404-240-8237 Betsy@prumc.org or Martha Christopher 404-240-8243 Marthac@prumc.org. Website is www.PRUMC.org

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Life with Gwendolyn
by Melanie Durity

My husband, Sean, and I have two precious gifts from God: Aidan, who is 4 1/2, and Gwendolyn, who is 2 1/2. When Aidan was born, we experienced the wonder of a baby's growth and development. In fact, the more we experienced, the more exciting it become to encourage Aidan's development. What things could we do to help Aidan learn? What could we do with Aidan to help him roll over, play with toys, pull-up, crawl, walk, talk, and explore his world? Aidan's first years were a lot of fun for us as a family. When I became pregnant with our second child, I became very excited about that process again.

When Gwendolyn was born, she was very healthy. After a normal pregnancy and delivery, she had good Apgar scores. As the first months went by, I noticed that she made eye contact, smiled, or played with toys less and less. She was not making any developmental milestones. I hated to read the parenting and new mom magazines, because they were depressing. We believed that maybe Gwendolyn was more laid-back than Aidan had been. At Gwendolyn's 6 month appointment, her pediatrician confirmed that she was 2 months behind developmentally and suggested that I do "tummy-time" very often with her, or he would refer us to a neurologist. Within that week, she began having "Infantile Spasms," a distinctive type of seizure.

We took Gwendolyn to Children's Healthcare of Atlanta at Scottish Rite for her first evaluation with a neurologist. The initial diagnosis did not sound good. She had "West Syndrome," characterized by infantile spasm seizures, developmental delay, and an EEG pattern called hypsarrhythmia. But West Syndrome is just a description of a set of symptoms, not an explanation. Nine months later, a muscle biopsy confirmed that Gwendolyn has a generalized mitochondrial disorder. This means that all five chemical processes (complexes I-V) in her mitochondria are not functioning properly; they do not create enough energy for her. Mitochondrial disorders affect everyone differently. For Gwendolyn, her brain is the most affected organ. This obviously leads to other kinds of problems.

In the last 2 years, she has been on 5 different seizure medications, none of which have been able to control the seizures with any lasting success. She will occasionally get a "honeymoon period" with a drug, where she will go about a week without seizures. Currently, she is adhering to the ketogenic diet (high fat, low protein and carbs) with some success. Gwendolyn has had about 6 months of relatively controlled seizures, but she has recently regressed. In addition to (or because of) her daily seizures, Gwendolyn has cortical vision impairment and severe developmental delay.

There have been times in the last 2 years when we thought Gwendolyn might not live another week. At times, we thought she might be on the road to recovery. We have dwelt in despair wondering if God is really there. We have rejoiced when He answers our most basic and critical needs. We have wondered if His people really care, and we have watched in wonder as His people pray, serve, and give. We can boil down what we have learned into one thought: walking by faith instead of sight is much harder when your sight is filled with despair and hopelessness. However, it is just like we are trying to teach Aidan. We don't always get what we want when we want it. Getting angry just makes it worse. Instead, we have to be thankful for what God does provide. He really does know best. And so, we are thankful. We don't understand our journey, but we are trusting Him through each day.

Focusing on the good in Gwendolyn is one way we are thankful. She is showing us everyday the things we should not take for granted. Gwendolyn loves music; she will sing with you if you give her a chance. She loves people - and remembers her caretakers’ and therapists’ voices. She loves to read, she loves to hold hands, and she loves to cuddle. She is learning the parts of her body - fingers, arms, knees. This life with Gwendolyn has unpredictable good days and bad, as you have likely experienced in your family. I am very glad she is in my life - in fact, I would not have it any other way. But I hurt for her sometimes; I grieve for the things that are lost to her at this point -- for the things we have missed, for the hard times yet to come.

I have learned one other thing. The longer we travel on this journey, the more I have realized that it is more about others than just Gwendolyn and our family. This journey is about all the people that God puts in our paths. What can we do? What can we say? Who can we heal? How can we help? Everyone needs a safe place and a group of people with whom they can share their triumphs, accomplishments, and hurts. We all need friends who share similar circumstances. That is why I am so excited to announce that FOCUS will have a share group meeting in the South Cobb area, at First Baptist Mableton on the 2nd Wednesday night of each month, at 7 pm. I hope to see you there so we can share our journeys together!

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From the Editor
by Lucy Cusick

Have you heard that it takes more energy to frown than it does to smile?? Well, it’s not scientifically proven, but there’s much discussion on the Internet about how many muscles each expression uses – the consensus is that smiling takes fewer muscles and thus less energy and work.

As parents of children with special needs, we are certainly no strangers to work. Our children require our energy to eat, bathe, play, and move. Add to that all the work that comes with being a mom or dad to the work that’s involved in everyday life plus the emotional toil of the journey of parenting a child with special needs….and I’m supposed to smile so I use less energy? Does this mean that it takes less energy to have fun??

Back in our younger days, Wayne and I decided to surprise the kids and go to Callaway Gardens for the day during the Hot Air Balloon Festival. We didn’t tell the kids (I think we wanted an out in case we decided the whole idea was too much work!), so when we woke them up at 5 am (the balloons go up at 7 am and we had to drive there – we really were crazy!), they were sleepy and confused. Jessica even asked if we were running from the police (now, where did that come from?) Yet, the expressions on their faces were priceless as they watched the balloons float up and away; they still talk about the time we left in the middle of the night to watch the balloons. It was work for us, but it was worth making the memory.

We’ve just returned from the 8th annual Under the Stars Family Fun Weekend at Camp Twin Lakes where our theme was FOCUS Rocks! Families came to play and have fun….but it was work. Families (mostly parents) packed, loaded, unpacked, made beds, changed clothes, brought medicine and special dietary food, hauled equipment, re-packed, re-loaded, unpacked again at home, washed all the clothes, and prepared for another week. It was work. But, we made memories that will make us smile for years. And just think of all the energy we’ll save.

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Don’t Call Me Special
By Michele Pearce

Our daughter Zoe was born on February 25, 1998, weighing 4 pounds, 6 ounces. We knew that she was small – labor was actually induced because the specialist I was seeing was worried that she had stopped growing. But when she was born, our tiny girl seemed pretty healthy. She had to stay in the hospital for a week after I left; shortly afterwards, my husband Matthew and I had the diagnosis. Zoe had a rare syndrome called Wolf-Hirshhorn Syndrome, a deletion in the short arm of the 4th chromosome.

We were given a stack of pages, photocopied from medical journals, describing the symptoms of WHS. They described children who didn’t talk, walk or grow much and who had striking facial features that I really couldn’t relate to my beautiful girl. Looking back now, I think I was in shock during that time.

I made the phone calls – contacted Babies Can’t Wait, started therapy at three months, tried to educate myself. We saw a wonderful geneticist, who told us to concentrate on helping our daughter “be the best Zoe she can be” and explained that the children in the medical journals were not always representative of the entire population of people with the syndrome. We stopped reading that stuff and started talking with other parents. There are, in fact, children (and some adults) with WHS who can walk and even talk. Since then we have met so many wonderful doctors, therapists and teachers who have helped uncover Zoe’s potential.

And Matthew and I had this little (and I do mean little!) girl whom we loved desperately. Zoe is blessed with a very sweet disposition, and I feel fortunate that she is so loving and affectionate. She absolutely loves people and music and going to school. She’s eight now and can walk with a walker and communicate very emphatically in her own way! Our families have embraced her without question – a few years ago she was the flower girl in my aunt’s wedding. There wasn’t a dry eye in the house as she walked down the aisle in her walker and scattered her petals proudly.

While pregnant with Zoe, I founded a theatre company with two other women. Theatre has been my passion for a long time, and especially as I waded through these tough early years, it has kept me going. Our company, Synchronicity Performance Group, has grown tremendously; we now produce three plays per year for adults and three for families. It was important to me not to give up my dreams because my child has special needs, although I certainly have had to be flexible with that dream! I’ve also had lots of support from my theatre family – especially my partners in the company, Hope and Rachel.

This year our company is producing, and I am directing, a play called A Nervous Smile by John Belluso, a very talented disabled playwright. Loosely based on a real incident in which parents abandon their child with cerebral palsy at a hospital, the play is very much about the challenges and struggles of the parents of children with disabilities. The parents in the play ultimately face the repercussions of their actions and realize what they have lost. The play also beautifully highlights the inner spirit of one of the children through the poetry she writes. FOCUS has joined us a community partner for the production, and we will be offering special rates for FOCUS parents for one of our performances.

Although the play can be challenging emotionally – for me it’s also cathartic. Working on it has helped me to put some of the feelings, ideas and changes that have been brewing in me for the past eight years into words, and hopefully onstage. Having Zoe in my life has taught me so much about patience and unconditional love. About how to respond to life’s challenges by celebrating the small accomplishments and treasuring the sweet moments.

One of the things that drove me crazy, especially when Zoe was a baby, was that people would say something like “Special kids are given to special people.” Although it’s a very nice sentiment and was intended in the kindest possible way, at the time I wanted to shout, “I don’t want to be special!” But being raised as a polite southerner, I never did.

Now I realize that my greatest problem with those well-meaning comments is that it comes with the expectation that I am some kind of saint, that in my “specialness” there’s a pressure to do everything right. I imagine all parents of kids with special needs know that that pressure and the ensuing guilt can be tremendous. For the parents in the play, that struggle becomes overwhelming.

So I’m here to say that I do not have to be special and my child does not have to be some kind of angel. I’m just a mom and she’s just a little girl, no more and certainly no less. Because that’s enough for both of us.

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From the Editor….by Lucy Cusick

Working at FOCUS in the summer certainly has its perks: we have casual day every day – we’re in T-shirts and shorts, usually sporting a little paint, glue, or chocolate pudding! Yep, this means that Camp Hollywood is in full force! FOCUS staff, counselors and volunteers are driving all over Atlanta, moving camp to 10 locations so that our campers can enjoy a week of fun in their neighborhood – or at least in their quadrant of Atlanta! Thanks to the sponsors, staff, counselors and volunteers who give their money, time, and energy to FOCUS. Because of you, we can create Stars at Camp Hollywood!

Preparedness: The Difference Between Chaos and Security in Your Home
By Margaret Richardson

Being prepared is not just the mentality of overly dramatic or paranoid individuals. It is a state of mind that all of us need to consider. “Preparedness” should become part of our everyday thinking. Am I prepared for a tornado, flood, severe thunderstorms, or any other natural disaster? Am I prepared for an act of terrorism or a health emergency such as the pandemic flu?

Each scenario presents its own separate challenges. In addition, to those challenges there is added stress on families with special needs children. It may be time for you to take a moment and imagine how your family would cope with this type of emergency. What additional challenges do you face? With some basic thought and preparation, a family can eliminate some of the stress that might occur in an emergency. Each of us needs prepare our homes and minds to help reduce the potential stress that would occur in our children’s lives should a disaster occur.

A 36-hour supply kit of food, water, and medication may be good for some types of disasters, but with the ever-changing threats which face us as today, we might be better to consider 6 weeks worth of supplies, in addition to the typical drinking water and food. How about extra prescription medications or special formula? Can you afford to pay for an extra month? Perhaps your doctor can give you samples? For other suggestions, see the special links below that will help you prepare an emergency kit for your family.

Preparedness is a sad reality of today’s world. In an emergency, we move back to the basic necessities of life: water, food, shelter, and medication. As parents, we want to protect our children and keep them healthy, and a little preparation goes a long way!!

http://pandemicflu.gov/plan/tab3.html
http://www.redcross.org/
http://emd.wa.gov/5-prog/prgms/pubed/05-campaign/05-campaign-idx.htm
http://www.fema.gov/plan/prepare/specialplans.shtm

Margaret Richardson has been involved in preparadness for 15 years and a Search & Recovery Professional (tracker) for 25 years. When not raising her own special son, she works full time for Boyd Construction, a local general contracting firm.

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My Life…by Nick Kostopoulos

Hello, my name is Nick Kostopoulos. I am sixteen years old and I attend Lakeside High School as a sophomore. I have had cerebral palsy for all of my life, and yet, I don’t see myself as very different from other kids my age... Okay that’s a lie. What kid could literally recite the entire libretto for the Who’s rock opera “Tommy?” What kid can claim to have seen “The Godfather” at least thirty times, or claim to be an ardent disciple of Stanley Kubrick? My favorite all time film is “Lawrence of Arabia.” It just also happens that the film holds one of the most life-inspiring quotes I’ve heard, “Nothing is written.” This quote drives me in my daily life to be the best that I can be. Lawrence proved that impossible things are just silly little warnings in your ear.

Now, the topic at hand: my disability and how it affects my life. In all honesty, and right now I’m thinking in terms of school, I really don’t think about it that often. I spend so much of my time trying to assimilate, trying to fit in, to set myself according to the behavior of my peers and friends, that I rarely let my disability get in the way of trying to be an average teenager.

Okay, maybe I’m not so average, but because of this I pick not so average friends. Graham, for example, is the biggest Deadhead in the world. And Michael takes the cake. He is probably the most cynical and witty kid I have ever met.

However, my time out of school isn’t the social picture I envisioned. Despite the fact that I have many friends, something tells me that my friends go out many weekends and fail to invite me, not being mean spirited, but simply because their parents would probably have a tough time taking a kid in a wheelchair. It is a lot to take in, but that doesn’t mean I’m an absolute recluse. I go out lots of times, just with older people. I am good friends with a married couple at my church, who have taken me many places. We share the same musical interests and they have taken me to several concerts. Recently we went to the Fox to see Laser Floyd. It was amazing and I truly value their friendship.

As far as school goes, last semester might actually have been the first time I remember getting straight A’s. I work very hard at school, all in hopes of leaving Atlanta, moving to California, and slapping Hollywood back into shape!

How do I plan to gain admission to USC, you ask? I’ll just have to do insanely well on the SAT. How do I plan to pay for the tuition? I have no earthly idea. How do I plan to get the head of the studios to listen to me? No idea there either. But I do know that setting high goals is important.

As much as I try to paint this picture of myself achieving normality, I realize this can really never be. Not because of the aforementioned things, but because I am disabled. Yes, most of the time if someone stares at me I notice, but oddly enough, I only realized people stared at me, when someone asked me if the staring bothered me. (Ignorance is bliss.) I am completely aware of my physical limitations. Most of my youth group activities involve sports. Even when they don’t, there’s still the issue of having an accessible room, having someone help me when necessary and having accessible transportation.

However, I’ve come to accept the fact that my disability makes me different, and that everyone has something that makes him or her different. Everyone has some obstacle, better yet, a flaw they must overcome. Cerebral Palsy is mine.

In fact, I’m not so sure I mind my disability very much. Sure, there are plenty of things I can’t do, but just think how different of a person I would be, if I could walk. I would definitely not spend so much time listening to music, and I would probably be less interested in film. In my honest opinion, do we really need another star sports player? If I weren’t disabled, I would probably be outside like everyone else. If anything, I’m more interesting because of my disability. I’m not sure what the future holds. I know I have big dreams. And I also know that “Nothing is written.”

Nick presented this talk at the closing session of our annual education conference featuring teens and young adults with disabilities.

Opening Up a World of Opportunity for Children with Disabilities via Adapted French Enrichment

Parlez-vous français? If you think your child’s answer to this question will probably always be “no,” did you know that it could be “yes?” As a child with spastic quadriplegic cerebral palsy, my family and I tried to find social activities I could participate in alongside my non - disabled peers. We attempted gymnastics, horseback riding, Girl Scouts, and Sunday school - all without success. Fortunately, we discovered an after-school foreign language enrichment program for elementary school children. The teacher had faith in my ability to learn and created a warm environment where I blossomed with the realization that I could excel. Best of all, I could speak French as well as or better than the other kids in spite of my CP!

Ten years later, I am graduating from Agnes Scott College and am being certified as a French teacher for pre-K – 12th grade. Over the past 3 years, I have had the privilege of operating a foreign language enrichment program that welcomes 1st-8thgraders of all abilities. At Language Discovery for Kids, children with cerebral palsy, intellectual disabilities, ADD/ADHD, Sensory Processing Disorder, Low Vision, and Autism Spectrum Disorders explore the francophone world. Many students acquire a great deal of conversational vocabulary in French. Others focus their experience on French culture, and some join us just for the French bread!!

To ensure a positive and engaging experience for each child, I meet with parents to learn about their child’s needs. Students embark on a foreign language learning adventure while being supported by multi-sensory teaching techniques. Through one on one individualized instruction, students acquire vocabulary for colors, numbers, animals, foods, and conversational phrases. The students love learning animals as they dive into a sandbox retrieving plastic toys and naming them in French. Some prefer to chase after animals on a scooter board, or through a tunnel. They master numbers as they make edible necklaces with cereal, write numbers in shaving cream and bounce on a therapy ball counting as they go. Some students like to talk about foods in French while swinging in a net swing pretending to be part of a stew they are cooking with play food.

Let me share with you the foreign language learning experience of very special student. Trey *is a 9 year old with hemiplegic cerebral palsy and a mild intellectual delay in a self-contained classroom. Prior to enrolling at Language Discovery for Kids, Trey did not participate in many social activities outside of school. Over the past 3 months, Trey has developed improved social skills and now makes eye contact with others in conversation. He has also gained self-confidence. He loves to teach his new French vocabulary to family members and to converse with the French-speaking school custodian. In collaboration with a local Occupational Therapist, I embedded sensory processing and motor activities into his curriculum. His teachers and family are noticing significant improvement in these areas as well. Trey now can count in French from 1-20, name colors, and use complete sentences to communicate interests and needs. Trey is keenly aware of his success in French. As Trey often exclaims, “I’m just so good at that!”

While many may have considered Trey incapable of achieving in foreign language given his significant developmental delays, he proves that children with disabilities can benefit from a wide variety of extra -curricular programs. For children with disabilities, finding an activity in which they can excel in their own right is as important or perhaps more important than for able-bodied children. Their developmental limitations force the children to be dependant on others for assistance. These children grow up in a world where those around them can do simple tasks with ease. Selecting an enrichment program in which your child can discover his/her own talent and find his/her own independent identity is an empowering gift for a parent to give.

Enrolling children with special needs in enrichment programs requires considerable forethought. Perhaps considering the following issues may be helpful.

• Does the teacher/leader have experience with disability that will allow him/her to facilitate your child’s active participation in the program?
• Is the teacher/leader willing to meet with you to learn about your child’s specific needs and abilities?
• Is the teacher/leader receptive to collaboration with your child’s therapists or teachers, and is the leader/teacher prepared to modify activities to facilitate success?
• Can the teacher/leader incorporate activities that foster the development of sensory and motor skills?
• Is the subject of the program, e.g., drama, music, French, comparable to the types of programs in which typical children enroll?
• Once the child is participating in an enrichment activity, is he/she showing clear signs of self-confidence and/or contentment?

In my experience, the answer to the question “Parlez-vous Français?’ can be “oui” or “yes,” for many children with disabilities. My dream has always been for one day parents, therapists, teachers and children to work together to create a world of enrichment opportunities where all children grow and learn together. I am happy to report that I think we are realizing that dream every day at Language Discovery for Kids.

*Child’s real name and photo are used by parent’s permission.

For more information about adapted French enrichment classes for summer 2006, please contact Kate Crews via email at kate.crews@gmail.com

From the Editor….by Lucy Cusick

Have you heard the story about putting your troubles in a paper bag?? It circulated by e-mail a while back - a perfect feel-good Internet forward. In a nutshell, the author tells us to put all our worries and troubles in a paper bag and to put the paper bag in the middle of a room of people (who did the same with their worries and troubles). No matter what our problems are, when told to choose a bag of worries, we would run for our own.

Now, I understand the philosophy behind this: (1) our problems are known to us and (2) other problems are unknown to us. Even when our lives seem overwhelming and difficult, we recognize that it really could be worse.....yes, it really could!

I know this because I am a special needs parent who lurks on the Internet. I lurk on list serves, I lurk on bulletin boards, and I lurk on websites made by parents about their children with special needs or illnesses. I’m not looking for information as I did when Josh was younger….I think I’m looking for wisdom…or meaning….or just the experiences of others. These websites are usually built for children who have an ‘acute’ illness or an accident and are meant to keep families and friends up-to-date on the daily condition of the child and the needs of the family. What a wonderful way to use technology – and a way for the parents to assimilate what’s happening to their child (and their family). I have several sites that I go to daily – I grieve for them on bad days and celebrate for them on good days. It’s funny, because much of the time, I know exactly how they feel – hopeless and helpless on days when nothing goes right and then joyous and amused at situations that would have horrified me before Josh.

Parents who have children with cancer just want to heal their child. They live from blood count to chemo; they learn medical terms and use words with more syllables than they can count. They must explain to their child that they are sick and try to explain why. They live for good days and pray for them to never end. They have learned that children die…yes, we all know that….but OUR children don’t die…always someone else’s.

Parents who have children who are injured just want to put their child back together. They camp out in waiting rooms, waiting.....for doctors, for news, for surgery, for a sign. They wish a thousand times a day to turn time back to the minute before the accident or injury. They learn medical jargon and the way the system works. They fear and hope and wait. They know their lives will never be the same, even if their child recovers fully.

And likewise, parents who have children with disabilities do all of the above. Many of our children were born with their conditions.....we have never known them without their wheelchairs, walkers, G-tubes, and meds except in our dreams. Some of us have heard their voices only in our sleep. These dreams fade into new dreams as we learn that our journey will last a lifetime. We learn to treasure the load because we know that tomorrow could bring another hospital stay, another trip to the ER, even the end of our journey. We know that life’s not fair and that if we want something done, we must do it. We want to give our children a childhood of laughter and love. We long for them to be accepted as they are.

We all have our paper bags, full of pain, fear, loss and anger. Continuing to add to our bags without lightening the load keeps our burdens and hearts heavy; sharing our bags may not ‘fix’ any problem, but it can make the load lighter. Some worries need to be ‘let go;’ some troubles need to be faced head on; and some problems need to be kept in perspective. Remember that FOCUS is here – we’re often busy planning programs for the children; fun days for the family; and helping parents understand the process. But we’ll share our paper bags so we can all continue on our journey with a lighter heart and a bag full of friends.

The Vent By Rage

I’m sure that many of you have experienced this…you’ll be talking to Lucy at some FOCUS event and she’ll say, “Why don’t you write an article for the newsletter. Write what you just told me!” Well, she has done that to me many times and I immediately become apprehensive. It is difficult to speak out when you’re already overwhelmed with the responsibility of caring for a disabled child. Lucy knows, through our long years of association, that I am often subject to RAGE. Not “road rage” but I have my own special varieties.

“Vendor rage”… you know, when it takes more than $15,000 and 8 months to get a wheelchair so specialized that by the time it has arrived my growing son has, well, outgrown it. How many more months will it take to get it right? I’ve had “doctor rage” when our usually sweet, compassionate doc says, “It’s just the way it is” without ever explaining what “it” is. (Okay, I realize later that that rage should be aimed at my God and we’ve come to terms on that emotion.)

Of course, I’d had “school rage” over inappropriate placements, unfair assessments, bullying bureaucrats, and ineffective services. Note that I’ve zealously advocated for my son’s rights under the law for 13 years, so I’m accustomed to my rage. But nothing gets my ire up more than the “transportation issue.”

Annually, at the beginning of the school year, I am forced again into battle. My son loves to ride his big yellow bus. He and I love his drivers. I find them all to be dedicated, compassionate people who get up very early to ensure my child’s safety across town to one of the few “appropriate placements” in this school system. I admire them, I bow to them.

Each school morning that bus lumbers down our short street, stops and lowers the ramp. By school policy, I have 2 minutes to get him on that bus. We don’t do well with the heat and dawn-buzzing mosquitoes, so when we spy the bus it’s a mad dash out the door and a race with me pushing that wheelchair as he squeals in delight.

I have “commuter rage”…those who use our street as a quick cut through to their inner city jobs can become absolutely belligerent at having to stop for the few minutes it takes to load and lock down. They honk, they yell mean things and they go around the bus, illegally. The drivers and I have become civilian enforcers, taking the tag number, reporting and hoping that it costs them 7 points on their license, at the minimum. Even the neighbors have stepped in, at times, as the civilian enforcement league.

This year, remember our 13th year in the system, I thought it would go smoother. We started school with a nicely appointed air-conditioned bus and an aide. I did have to remind the driver of the 1 hour limit placed on the IEP, but she understood and immediately adjusted the route. However, within the week I was informed that we had lost the aide and may lose the air-conditioning as well. I was shocked that despite basic common sense and safety concerns, the transportation department would allow a driver to operate alone in transporting three wheelchair users plus one rider. How would this driver manage alone in an emergency evacuation? How could she drive in the hectic traffic patterns of intown rush hour and still be alert to possible seizure activity or equipment malfunctions? I spoke with the transportation coordinator. She was impolite and informed me that I would have to get yet another transportation form, not available from her and one that she could not describe the content of, other than that my request must be certified by a physician. She directed me to our lead teacher. I called the lead teacher, requested the form and an immediate IEP team meeting to address this issue.

Under IDEA, transportation is a related service. It alone cannot dictate placement, a battle I had fought early on. The regulations under this law at one time limited transportation to one hour but had been amended to allow “reasonable time.” Years ago, I placed a one-hour limit on the IEP for transportation, easily justified by the limited mobility of my son and a tendency toward tissue breakdown. No one argued and no physician’s certification was required to substantiate.

Now I was appalled to hear from this coordinator that basic common sense for the health and safety of the children on this bus was to be denied. Apparently, the IEPs of the three wheelchair users on this bus did not explicitly require air-conditioning or an aide. RAGE is accurately an understatement.

The IEP team met. The school nurse, who had consulted with our teachers over the last years, attended and spoke up regarding the severity of tissue breakdown. I once again detailed my son’s seizure history as it had been explained on the transportation emergency form filed annually. In short, he seizes until medicated and we are blessed that those occasions are rare and have never occurred in the school setting. Then I sat back and listened.

I listened to the transportation director, a man I personally admire for the tough job he has taken on. I listened as he explained the high cost of an air-conditioned bus ($80,000 plus), the limited resources (no funds), and the high demand (increased numbers to be served). The team agreed that my son’s IEP would henceforth require both air-conditioning and an aide. I had the physician’s signature, the form was filed. I was placated. My rage on this issue subsided…but never for long.

I recently learned that for three years there was a huge pot of federal funds available for special education services. That for three years the State of Georgia had the opportunity to use those funds in service for our kids. They were discretionary funds and could be used for programs, services, buses, aides, whatever. But at the end of 2003, Georgia returned over $3.5 million dollars in unspent or misspent Federal dollars. See http://www.detnews.com/2004/schools/0402/11/schools-31658.htm.

I am enraged, at myself, for listening to the lack of resource argument from the school districts. I am enraged that my son was never able to attend his home school due to lack of resources. I am enraged that our children are transported long hours in unair-conditioned buses without appropriate personnel because of lack of funds. I am enraged that every year, in every IEP meeting I’ve listened and lost services. I am enraged that the only skill my child has learned in his 13 year experience is to sort socks. I ask: Is that an appropriate education? I will no longer listen. I will let my rage speak and it will ask: “Why did you not utilize the resources when they were available?” And then I will quietly insist that they have a legal duty to provide an appropriate education for my son out of local dollars and state dollars as well as the Federal dollars they have failed to seek and utilize.

Just call me Rage…I will no longer just listen, I will speak out.

What Next?
by Ann Floyd
You’ve tried everything the doctors have recommended: physical therapy; psychological therapy; medicines, and surgery. But, still, every night, your now teenager cries out in pain. A sense of frustration and hopelessness takes up residence in your mind and you might want to give up...but you can’t. After all, this is your child, and you would do anything to relieve his pain and anxiety. So, you continue the rounds of doctors, you talk with family and friends, hoping and praying that someone has an answer. You try every suggestion from doctors and therapists with no relief. “What next??” is the question of the day. Where do you go when conventional medical treatments have been tried and failed?

Following weeks of hearing her son, Ben, cry out every night in pain, Jennifer Gilkerson, decided to seek answers “outside the box.” Stress and anxiety from Ben’s chronic pain (due to cerebral palsy) was affecting every member of their household. Jennifer had sought help from the traditional sources. Some brought temporary relief; none was completely successful in relieving Ben’s pain. The last alternative offered by Ben’s doctors was surgery - one she hoped to avoid because even that wasn’t guaranteed to work. She was hesitant to put Ben (and herself!) through painful surgery, weeks of very limited movement, braces that were cumbersome and the emotional drain surgery brings. Believing there had to be an alternative to the surgery Jennifer began to search for a different course of treatment for Ben.

Thinking “outside the box” led Jennifer to try the Chinese healing tradition acupuncture. Like all forms of Chinese healing traditions, acupuncture revolves around the concept of maintaining balance and harmony within the body. It is thought that when chi (life energy) becomes stagnant and the flow is disrupted, illness and disease result. In order to restore chi distribution, needles are inserted into acupuncture points along the meridians (energetic pathways) of the body.

Due to the large number of potential acupuncture points (there are in excess of 350 acupoints on the meridians of the body), an acupuncturist carefully selects the points to be used on the basis of:

• pulse diagnosis
• observation
• examination
• questioning

From the information garnered, the acupuncture points are determined and needles are inserted. The size of the needles is dependent on the area of the body where they are to be used. For example, longer, thicker needles are used in areas where there is more "cushioning" such as the buttocks, while small, thin needles are used where the flesh is thinner and closer to the bone. In either case, insertion of the needles is quick and virtually painless.

Acupuncturists earn a degree following a three to four year program that includes course work and internship training. Classes include both Chinese Medicine and Western Medicine diagnoses in areas such as obstetrics/gynecology and digestive disorders. After course work is completed, students are required to complete over 700 hours of clinical internships at a variety of locations.

Ben’s first session with Chris Haskell of Intown Acupuncture Center involved questioning Ben (and Jennifer) on the specifics of his pain, diet, lifestyle and previous medical treatments. The questions enabled Chris to determine where needles would be inserted for best effectiveness of treatment. She then showed Ben the needles and explained carefully the process. Despite Ben’s fear of needles, he was willing (and just curious enough) to consent to trying acupuncture. Ben came home from this first session excited to tell all about what had happened. He had no reservations about returning for future treatments. Most importantly the acupuncture was working! Over the weeks of treatment Ben has complained considerably less about pain. He is sleeping better, eating better and is less anxious. (A note here: Ben continues to be on medications for anxiety/pain, and it is assumed the medications are helping also).

Even more remarkable has been the unexpected relaxing of Ben’s muscles, both in his legs and hips. As the acupuncture sessions continue, each week brings a change in how straight Ben is able to get his legs and how flat he can lie on the table. In the past, Ben’s feet and lower leg would remain in the air while he was lying down. One hip was always raised higher than the other. In the last few sessions of acupuncture, Ben has been able to lie almost completely flat on the table, his hips almost equally at the same height and his feet touching the table! What an amazing (and welcomed) sight to behold. Acupuncture is proving to be a successful, alternative treatment for Ben’s pain.

I believe any successful treatment happens due to the treatment itself, the person giving the care and the relationship the client has with the caregiver. Chris is certainly a major part of Ben’s “success story.” Her kindness, patience and caring is evidenced by how she involves Ben in every aspect of the treatment, explaining carefully to him each step, listening to his questions (and ramblings!) and including him in any decision that needs to be made. Ben looks forward each week to going to acupuncture. He happily tells others of his experiences and recommends everyone try acupuncture. Jennifer, having thought “outside the box,” is relieved her search to find pain relief for Ben has been successful. Now each night instead of worrying that Ben will be crying out in pain, she knows she can say “good night” and it will be one.

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Four Leaf Clovers
by Jessica Jones

The door creaks slowly open. Young eyes are waiting on the other side. Their ages vary: some are mere infants, and others are as old as 18. Many people cannot look past their differences: unfocused eyes and incapable limbs, slurred speech and erratic movements. Most eyes look away, unsure how to connect with someone so different. After a wall has been built, it’s difficult to see a willing heart.

I learned about FOCUS (a program for families with special needs kids) in my sophomore year, fortunately and completely by chance. For that one moment, I let my wall down; I haven’t seen it since.

One Saturday each month, I enter a world of laughter and suspended dreams, a room of young eyes and willing hearts. In two years, they have taught me lessons that I never learned in English or Algebra.

Melanie has taught me that genuine gratitude is more meaningful than saying thank you; Ross has shown me that words are only one means of communication, and not necessarily the most important. From Roxi, I have learned that strength is being able to tackle whatever obstacle is thrown your way, and from Jeremiah, I have learned that the true measure of character is love shown to a stranger.

Sometimes the most important treasures are the ones that are the most difficult to find. Almost everyone has gone searching for a four-leaf clover at one point in time, picking through a huge mass of green until the treasure is found at last. But why is it special? Because it is different, because it is rare.

On my first morning in the FOCUS room, I let down my guarded wall just long enough to be swept into another world—a world of four-leaf clovers.

Jessica volunteers at Extra Special Saturday in Marietta. She submitted this essay as part of her college applications.

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From the Editor…by Lucy Cusick

Meeting young children and families is a favorite part of my job, but it can also bring back lots of memories…memories of having young children and feeling REAL accomplishment…..like unloading the dishwasher all at once; washing and folding an entire load of laundry on the same day; or having more than one room in the house without toys, books and juice cups scattered everywhere. During those days, I longed for two days straight without a therapy or a doctor appointment….but then didn’t know exactly what to do without therapy (other than unload the dishwasher, do laundry or clean house!).

When Josh was little, my new life as a stay-at-home mom of a medically fragile baby was structured by his appointments. Since he was our first child, I really had no clue as to what a ‘typical’ toddler did all day. All activities had to be initiated by someone (me) – he couldn’t explore the world without help. His physical therapist encouraged me to incorporate exercises into our day…..carry him this way, sit him that way, make him reach with his left hand, make him weight bear and side step every day, make him vocalize, and on and on and on. One exercise led to another with few ever being checked off the list as accomplished; progress was slow and the light at the end of the tunnel was pretty dim. I had a hard time staying motivated, especially when Josh loved his toys and could spend hours playing alone.

Witnessing the ease that typically developing children learned skills depressed me, so I veered away from neighborhood playgroups. However, I had a few special friends with typical babies who lifted me through those early years. These friends encouraged me to visit and play on the days he didn’t have therapy; we played in the driveway, ate grilled cheese and took play doh to each other’s house (always TAKE play doh). We visited parks and enjoyed sliding boards, sand boxes, swings and picnics. Slowly, I learned to do typical things without their insistence: storytime at the library, Vacation Bible School at church, and afternoons at the neighborhood pool. Most of the time, Josh was the only child with a disability; I eventually learned not to think or compare – just do. I finally learned that if we worked and played a little each day that the mission didn’t feel so impossible. Five minutes of exercise was better than no exercise (a lesson I never learned for myself!); a stretch here and there was better than no stretch; and that a day off was the best medicine to prevent burnout.

My friends and I now depend on occasional phone calls to stay in touch. Of course, their babies are mostly grown and in college; another story for another day. But when I see little ones at FOCUS events, the memories come rushing back: the overwhelming days; the endless and sleepless nights; the sweet smell of a freshly bathed toddler. Of course, I automatically stroke their hands to encourage them to open their thumbs; praise them for looking at me; and applaud them when they attempt a step on their own. All while silently wishing for a night full of sleep for their parents.

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My Life…Our Lives
by Lori Berger Bryan, as presented at the annual FOCUS conference on February 4, 2006

Thank you for inviting me here today. Just to let you know a little about me. I am 35 years old. I went to Druid Hills High School and graduated in 1992. I have worked at Druid Hills Child Development Center as a teacher’s aide since graduation I love my job and watching my little students grow up.

My sister and her family live in East Cobb. I love visiting with my nephew and niece. They are so cool. My brother and his wife live in Philadelphia. We like going to visit them. Philly is a great city. Mom & Dad live near by about 10 minutes away. That's nice when we need them.

David and I have been married for 2 years and it is great. We met on a trip to Israel. We sat next to each other on the plane and I knew he was the guy for me. I told all the other girls he’s mine, STAY AWAY. Our wedding was so much fun. We had all our family and friends there for our special day. We danced and had a great time. My Dad even sang to me. A reporter did a story about our wedding. That was fun too. David is a very kind person. He has a great smile and is so cute. He makes me feel good. He takes care of me. We talk a lot. If I need him, I call him or beep him and he helps me out.

At home we share the jobs. If I cook, he washes the dishes and if he cooks I wash the dishes. We clean our apartment together. We change the bed together because it is so big. And we share doing the laundry. We have lots of laundry.

David could not be here today because he is working. He works at the Holiday Inn Select. He has worked there for 10 years.

David and I love to have to parties. We have a Chanukah party every year. Sometimes we have a New Year's Eve party too. For David's birthday this year, I had a Chocolate Fondue Party for him. It was so much fun and the fondue was yummy.

For our second anniversary we got a kitten. We named her Sabrina and she is so cute. We just love playing with her. She loves sleeping in bed with us.

On weekends, if David is not working we will go to the mall for lunch and a movie or shopping. Sometimes we take Marta. David is helping me learn to use Marta. He is very good at it. We both have consultants that help us with our bills, writing checks and grocery shopping. My consultant helps me make healthy meals for us. Some of my favorites are meatloaf, chicken pot pie and I make a really good banana bread. My family always wants me to bring it for dinners. I have transportation that takes me to work and David rides Marta to work. We both have job coaches at work that help us be successful.

It is important that we have these supports so that we can live this life we love. I hope you will help your children reach their goals like we have.

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Sarah Halle Sinks was born on July 25, 2002, five weeks early, and, as her older brother and sister often recount, “the day before the last day of summer camp.” Sarah Halle’s arrival was sudden. We rushed to the hospital when my membranes spontaneously ruptured. An immediate ultrasound showed Sarah Halle in a transverse lie. With this news, I was soon on my way to have my first cesarean section.

I remember how strong Sarah Halle’s cry was when she was lifted out of my body, how beautiful she looked at 35 weeks gestation, and how high her APGAR scores were. A delivery room nurse seemed uncomfortable about her left clubfoot, but I assured her that I knew about this and that we already had visited the orthopedic surgeon to learn about the treatment. My elation at Sarah Halle’s healthy start changed later that morning when she tried to breastfeed, turned blue, and the nurse did not find oxygen at my bedside. There was panic as the nurse ran down past the other beds in the short stay unit, found oxygen, and gave it to our daughter. Sarah Halle was then whisked away to the NICU and I did not see her for another day. Four days after the delivery we went home with our beautiful Sarah Halle, a state-of-the-art breast pump, and bottles and nipples designed for a premature baby who was not yet able to breastfeed.

The next ten weeks were spent feeding and holding Sarah Halle, monitoring her growth carefully, and going weekly to the orthopedic surgeon’s office to carry out the Ponseti Method of manipulation and casting to treat a clubfoot. Sarah Halle responded beautifully. My parents were here to help. Sarah Halle completed the ten castings, had her Achilles tendon lengthened in a minor surgery, and was fitted for a foot brace. Although it was a stressful time, I was confident that life would soon settle down.

But life did not settle down. At four months, Sarah Halle was diagnosed with congenital hip dysplasia. Her left hip was completely dislocated and not forming properly. She was placed in a Pavlic Harness 24 hours per day and spent each day on her back or in our arms. We tried to comfort and amuse her. It broke our hearts to see our daughter endure more treatment, but we assured ourselves that this too would pass. By seven months of age, Sarah Halle was weaning off the hip harness and doing very well, but as I played with her I noticed that she only reached for toys with her right hand. We wondered if the shoulder straps on the harness had weakened her left shoulder, or if there was yet another congenital orthopedic issue. I mentioned this to our orthopedic surgeon at our visit that week. I remember how he listened carefully to my concerns, paced in and out of the examination room, commented that he attributed the lack of movement in her left leg to the orthopedic issues and casts, but could not find an orthopedic explanation for a lack of movement in her left arm. He called the head of pediatric neurology to get an appointment for Sarah Halle as soon as possible. I was stunned.

“You think she might have cerebral palsy?” I asked the neurologist after he examined Sarah Halle. “She has cerebral palsy,” he repeated with compassion. I found it difficult to focus on the conversation that followed. My thoughts were a million miles away. For the first time I wondered if the orthopedic impairments we were so diligently treating were part of something greater — or was this the outcome of the feeding episode when Sarah Halle turned blue? I sobbed in the lobby, called my husband and mother, and then drove home in the pouring rain to call a friend who fortunately was home. I did not know what to do next or what to expect. I was numb.

Growing up in New Hampshire my father taught us how to plan for survival. We had a plan if the canoe capsized, if we fell through the ice, or if it starting snowing on the way up Mount Washington (which it did!). The numbness I felt that day after the neurology appointment was my reaction to a situation for which I had no plan, no knowledge, and no experience. I was on a journey I never expected to take – a journey with an uncertain destination. I have never been comfortable with uncertainty.

Slowly I learned my way, but not without the help of an incredible community of family, friends, colleagues, therapists, physicians, caseworkers, babysitters, and teachers. The emotion flows when I think how so many individuals have reached out to support us in so many different ways and how together their support provided us with the strength and optimism we needed. They connected us with therapists, physicians, other parents of children with special needs, and organizations like Babies Can’t Wait and FOCUS. They listen over coffee or on the other end of long telephone calls as I tried to work through what had happened and what was happening, and they offered words that provided daily support. Family flew in to help and accompany us on appointments. Nicholas and Hannah, our older children, showed incredible patience with our new life, the time we needed to spend on home therapy, and with a sister they loved and motivated. Friends and neighbors arrived with very much welcomed dinners, baby clothing, flowers, two-handed toys, equipment, mats, swings, even an entire play structure. They arrived with open arms to help, to baby sit, to hold Sarah Halle, and to keep our older children’s lives as unchanged as possible by helping us maintain their friendships and activities. Friends regularly took (and still take) all three children for the evening so that my husband and I could go to dinner. Friends helped with carpools (even when their own children did not need to be picked up!), caseworkers helped us navigate through complicated supplementary insurance applications, and teachers loved our children, supported them, and made an effort to reassure us that they were okay. Supervisors and colleagues supported a leave of absence from my job, later accommodated a much reduced work schedule from home, and provided me with stimulating work I could do during the early morning hours — work I needed for so many reasons. It took a village.

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“THERE’S NO PLACE LIKE HOME…” by Erin di Chiara, MAOTR/L, CAPS

Home modifications – sometimes dreaded, sometimes welcomed, but usually necessary for any person with a disability or person caring for someone with a disability. Before discussing the modifications, it’s important to look at the word “home.” Home is more than a structure. Spaces, objects, memories, routines, people and beloved pets all comprise a place called home. So it is no wonder that families react strongly to the thought of modifying their home. Some of the primary concerns seem to focus on money. What will these modifications cost? Will they decrease the value of my home? The next set relates to what do we need to do. How much or how little to modify? Will our home look like an institution? Where do we go for help? Finally, questions about their child’s current and future needs. Am I limiting my child by adding additional supports? Will these modifications isolate my child more? Am I giving up on my child’s ability to gain more skills by doing these modifications now? Is my child too young to benefit from modifications? All of these questions require a personal and individual response. The area of home modifications is broad. Home modifications are not just about the individual with a disability, they also are about “taking care of the caregiver” as the key factor in sustaining an individual with disabilities in their own home.

Parents can’t collect Workman’s Compensation for “on the job” injuries. These injuries can include Carpal Tunnel Syndrome, rotator cuff tears, back injuries, herniated disks, hip injuries, knee replacements and abdominal hernias. These injuries are classic repetitive use injuries that do not heal completely unless the “job” that caused them is eliminated or modified. The surgeries to repair these injuries can cost anywhere from $10,000 to $25,000+, not to mention that parents do not get “paid leave” from their parenting job. These conditions are usually accompanied by significant pain and discomfort prior to any surgery. All of this can lead to increased stress trying to maintain a consistent level of care. So when e