FOCUS - support for children with disabilities or medical needs

“G-Man”
by Greer Gaston-Anderson

My husband, Ernest, and I waited a little longer than the average couple to have children. I was blessed to find a job right out of college in my major. Ernest was already working in metro Atlanta at a job he loved. I was career-oriented and really not ready to be a mom. Having a child really changes your life and is a lifetime commitment; I wanted to be 100% ready. I eventually wanted to be a stay-at-home mom. Just one of the many goals I had planned!

We decided the time was right and I was finally pregnant! We were so excited! I went to the doctor for every little thing - everyone understood since this was our first child. Everything was great until the twentieth week when my blood pressure started going up. I eventually had to go on bedrest; then I was diagnosed with toxemia. Gaston was born at 28 weeks; he was so tiny that he fit in the palm of my hand. Just before he was born, I put everything in the Lord’s hands and said, “Father, do as you will.” The doctor told us to prepare for him to die, but we could not believe that God brought this child into our lives only to die. We wanted and loved him before he was born.....he already had our hearts.

Gaston started surprising everyone at that moment. He kept hanging on. I saw him every day, then every other day. I realized that I had to take care of myself so I could take care of him and my husband. We taped our voices so Gaston could hear us, even when we couldn’t visit. I brought in pictures and lined his incubator so he could see his Mommy, Daddy, and first best friend Bootsy, our dog. Ernest brought him a special stuffed animal. Eventually, I went back to work part-time because I wanted to spend the maximum amount of time with him when he did come home.

Gaston had all the preemie issues except brain hemorrhages. He had Stage 2 retinopathy which eventually resolved. His major problem was his airway. Gaston was intubated with a ventilator for a long time; because of this, his vocal cords were paralyzed. He also had terrible reflux. However, Gaston was a feisty little fellow and extubated himself frequently!! I think his spirit kept him alive.

The plan was to put in a J-tube (a tube into his jejunum or small intestine) to give his vocal cords a rest and to protect his airway from the reflux so he could come home. They expected that with oxygen and the J-tube that his vocal cords would begin working after a couple of months. God had other plans!! Gaston didn’t get off the ventilator. We had to decide whether to continue on the ventilator or to put in a tracheostomy. After much research and prayer, we decided to go with the trach. It was such a scary experience, but when Gaston woke up, he was off oxygen and doing so well!! We finally saw his face without the tubing or tape! He eventually required 23% oxygen (only 2% more than room air!) to keep his body from working so hard and to give him a chance to grow and get stronger.

Gaston came home from the hospital after a very long time, but I immediately saw a difference. He excelled with all his therapists and his vocal cords started working within two months. He required less oxygen and gained weight quickly, with a little help from Polycose (a powder added to liquids to increase calories). We had nurses in our home; it was hard having strangers in our home, but his primary nurse, Linda, became a part of our family. It was reassuring to know that help was nearby if his trach tube came out; even though I dreaded the day when we would have no nursing, I managed with little panic. Gaston was, of course, fine!

Gaston was rehospitalized frequently the first two years, but as he grew older, he got stronger. About the time his little brother was born, he was diagnosed with developmental delay, pervasive developmental disorder (PDD), and cerebral palsy. At two, he got glasses and actually kept them on! If he could have talked, I imagined him saying, “Finally, Momma and Dada fixed my eyes and I can see much better now!”

In 2002 (he was 5), his trach came out, he started eating pureed food, and he kept signing in his own way “trach out.” Gaston learned to make sounds stronger and amazed himself with the loudness! I think he was surprised he could make such a sound!

Gaston just turned 7 and has started a new chapter. He’s in a new school; he’s learning to try food with texture, and he’s communicating his wants and needs better. He now has a little sister who is into everything - she gives both her big brothers a run for their money! Gaston is challenged by his younger siblings and is blossoming without a trach and slowly learning to overcome his fears of eating.

I see in those dark brown eyes a beautiful, affectionate, sensitive boy who longs to see the light at the end of a dark tunnel. I see the light as different techniques, therapies, technologies, and programs. We are always searching for help for Gaston - we just want him to live his life to the best of his abilities and to be happy. When we meet other parents, we know what they are going through and we pray for strength for each parent.

I love when all my kids come to me wanting love. But when Gaston wants to climb in bed and cuddle, I truly cherish it. He can’t say the words “I love you Momma,” but I know that he feels safe in my arms and he is happy to be with me.

I believe that God brings people and events into our lives for a reason. He has a plan for each of us, and only He knows the plan. I am blessed to have Gaston in my life, and when the road is bumpy, I know that my faith, husband, family, and friends will see us through.

From the Editor....Lucy Cusick

For three weeks in September, I watched the weather forecast, from dawn to midnight. I watched tropical storms turn into Cateogory 4 hurricanes and blast into land. I surfed the television, from local channels to the Weather Channel. I ate breakfast, lunch, and dinner waiting to see if the reporters could stand up in the wind.

From the moment a tropical storm is named, I track it like a bloodhound. The kids hide the remote control from me; I go to Kroger for milk and bread a day before anyone else. The only prediction better than a hurricane is a possible snowstorm!

You see, I like to know what tomorrow brings. When bad weather is predicted and power outages are possible, I do the laundry and run the dishwasher. I like to plan, I don’t like surprises. I also love options - I plan out scenarios - you know, if this happens, I’ll do this, if that happens; I’ll do that. Of course, sometimes, I can’t make a decision because of all the options, but I manage.

How did we survive not knowing the weather days ahead of time? Did we really just get out of bed and look at a thermometer and guess what the weather would be in 6 hours? Did we just plan barbeques and hope for the best? How did we survive? How did we dress?

And here I am. The parent of a child with special needs with no instruments or barometers. I sure wanted them - from day one, I wanted predictions, opinions, answers. I wanted to know what was ahead. I wanted to plan and ponder and find options. How did I ever live through this? How did I survive the not knowing? How did I learn to face each day? What’s better, knowing the future or living one day at a time?

Easy for me to say now, since Josh is 18. I did survive the early not-knowing years; we still have questions for the future, but we now know his strengths and weaknesses, something we didn’t know early on. I’ve even learned to enjoy some of surprises and to not always carry an umbrella ‘just in case.’ Unless there’s a hurricane on the way.

My Heroes: Special Needs Kids
by Mollye Ariano, 3rd Grade
Dedicated to Haley, Ryan, Morgan, Ty and all my special friends at Riverside Elementary

Each day I see them in the hall
Holding their heads up proud and tall
They try their best at all they do
They work very hard all the day through
Because simple things can be hard for them
Like walking or writing or climbing a limb
Some use walkers and wheelchairs to get around
Some can’t speak so instead they make sounds
When I first met a few I was a little scared
They were so different, but soon I didn’t care
They laughed and played just like other kids
They wanted friends just like others did
And now I know that in many ways
They are like you and me throughout the day
They hold my hand and play with me
They teach me that being different is not a bad way to be.

Sensory Learning
by Shelly Grabe

I am the mother of two beautiful little guys, Hayden & Colter. Colter was diagnosed with autism, attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD) and Sensory Dysfunction when he was 16 months old. We (like most of you) have worked diligently to help him reach his full potential.

Shortly after Colter's diagnosis in 2001, he began occupational therapy. His therapist, Tara, and he bonded immediately. I will always remember the first day she came. Colter was nonverbal and all his sounds were a low, gruff growl (if you will). Tara immediately laid him on his back and began to give him deep pressure into his chest. I can still picture Colter looking at her as if to say, "Where have you been - I really needed that!!"

Tara taught us that Colter needed endless sensory input and how to help him. One fall afternoon, Tara took Colter outside with a jar of peanut butter. She massaged the peanut butter all over Colter's arms and legs, and they rolled around in the grass. He came inside covered from head to toe in a peanut butter mud pie with the first genuine smile we had seen in years. Shortly after, language began to emerge.

A year and a half later, I discovered a post about Sensory Learning on the informative North Fulton Autism Support Group (NFASG), a Yahoo Group listserve. I promptly forwarded the email to Tara to see what she knew about it. Tara began researching the program, even flying to Colorado to investigate; she and her husband, Greg, finally opened InterActiv Children's Therapy Services in Sharpsburg and added Sensory Learning to their already amazing program.

We were skeptical of Sensory Learning initially; we've had our hopes up about other 'fad programs' and didn't want to be disappointed. The program, in a nutshell, combines auditory, vision, and vestibular training all at the same time. The program is 30 days, 12 in the clinic and 18 days at home. We went into the Sensory Learning program with no expectations, and we have come out of it with new expectations for our entire family's future.

We are now 47 days out of the complete program and are pleased beyond words. Colter is self-regulating his sensory needs. He can now tells himself "one more time" with his OCD behaviors. His compliance has gone through the roof. We are mastering three ABLLS (Assessment of Basic Language and Learning Skills) programs a week; previously it would take a month to get two. His spontaneous language has gone from 2-3 word utterances to 6-9 word statements and questions. As my analytical husband, Adrian, noted that before Sensory Learning, Colter appeared 'typical' 5% the day; now you could not tell him from his peers 75% of the day.

A couple of days into the Sensory Learning home portion, I was reading to the little guys, and Colter spontaneously started hugging and kissing Hayden. Hayden looked up at me after the kisses and hugs with tears in his eyes and said, "Mommy, Colter does love me!" I was so taken back. I replied "Hayden, Colter has always loved you. He just couldn't tell you or show you."

Adrian and I now watch in amazement as the boys play legos, wrestle, and have sword fights. We know we did the right thing and want to share the program with others. You can find information on Sensory Learning at www.ictsonline.com or www.sensorylearning.com

Kendra
by Stephanie Kieszak-Holloway

On Sunday, September 8, 2002 the Atlanta Journal-Constitution printed a special supplement in remembrance of 9/11/01. In that supplement was a piece I had written about how it felt to be out of the country when the Twin Towers were hit. My husband Richard and I were returning home from France after a week’s vacation when the pilot announced we would be turning back. In the article, I discussed the trauma of being away from our loved ones when the tragedy occurred and concluded with a wish that our baby could be born on September 11, 2002 so we would have something joyous and positive to associate with that date. Since my due date wasn’t until September 29th, it seemed unlikely to work out that way.

On September 10th I left the house for my routine doctor’s visit. I remember that as I was walking to the car Richard commented that it didn’t look like we were going to have our September 11th baby. During my check-up, the doctor discovered that my blood pressure was much too high so I was sent straight to the hospital. They monitored me that day and sent me home to stay on bedrest for the next three weeks. After extracting a promise from Richard that he would absolutely, positively, definitely pack his bag for the hospital when he returned from a meeting that night, I tried to get some rest. Just a few hours later, I was on the phone telling him to get home as soon as possible because my water had broken. We got to the hospital around midnight and at 4:34 AM on September 11, 2002 our beautiful Kendra was born.

I knew something was wrong right away because I could hear the nurses whispering over Kendra in the corner of the room and they didn’t bring her to me to hold. The rest of that day is really still a blur for me. I’m not sure when it was that someone actually told me Kendra was missing her left eye. I do remember the VERY young pediatrician on call trying to make light of it by joking that Kendra would never be a pilot. Wasn’t funny then; isn’t funny now. She was transferred to the local children’s hospital that same day and although I asked to be released to go with her, they wouldn’t let me go until the following morning.

A pediatric ophthalmologist (PO) examined her at the hospital and told us that she had microphthalmia in her left eye and a cataract in her right that was not in her field of vision. He suggested that we follow up with him when Kendra was three months old. She also had jaundice and a problem with her hematocrit levels so she stayed in the hospital for three days. Once we were allowed to take her home, she had to remain on the bili-bed and go to the pediatrician daily for blood tests. After the jaundice and hematocrit problems were resolved, we tried to just get on with our lives while getting used to the idea that our little girl would have a visual impairment. At that time, we thought it was just a question of whether Kendra would need large print books when she got older.

At Kendra’s two month well baby visit, the pediatrician noticed a change in her right eye that alarmed him. We saw the PO right away and he confirmed that the cataract had worsened and was now blocking her vision. Surgery was scheduled for the following week. A very short time after the surgery was supposed to start the assistant came out and told us they were unable to perform the operation. Kendra’s retina was attached to her lens so the PO wanted a retinal specialist to perform the surgery. Between Richard screaming and me crying, we were able to get an immediate appointment with the retinal specialist. We brought Kendra to his office still groggy from the surgery that hadn’t happened. The surgery was performed the following week. Afterwards, the surgeon expressed his pleasure at the way it had gone. We allowed ourselves to feel hope. Kendra got her little glasses on December 8th. I will never forget the way it felt the first time she saw me. I came home from work and went to take Kendra from my mother-in-law. As I went to put Kendra’s head on my shoulder, she lifted and turned her head, looked me directly in the face, and smiled. It was truly an “all is right with the world” moment.

Things seemed to be going well for the next couple of months until a regular follow-up with the PO revealed that Kendra no longer had a red reflex. After examining her under anesthesia, the retinal surgeon determined that her eye had hemorrhaged. We then started to play the waiting game; our surgeon thought the risks of additional surgery outweighed the risks of waiting to see if the eye cleared on its own. We continued to take Kendra to see him every week. At a visit in late February, the surgeon seemed optimistic that her eye was starting to clear because the color had changed and the pressure dropped. He sent us for an ultrasound just to make sure everything was okay but told us that we probably wouldn’t need to see him for awhile now that things were looking better. Our excitement was short-lived however. The ultrasound showed that Kendra’s retina had detached. Surgery was scheduled for March 3rd; it was unsuccessful. He then proposed trying one more time and discussed with us how he would use silicone oil to hold the retina in place. On March 17th, he once again attempted to reattach her retina. I will always be able to picture in my mind how ashen he looked when he came out to talk to us after the surgery. He explained that he was never even able to try the oil because he couldn’t get the retina to lie flat enough to reattach it. I think the news was even more upsetting because here was this arrogant and oh-so-confident surgeon looking as if his world had just caved in.

In a strange way, the second surgical failure was somewhat liberating. For the first time, we felt like we knew what we were dealing with. Barring a medical miracle, our little girl would be totally blind. That was something concrete that we could concentrate on. We knew we would need to learn Braille, we knew we could stop subjecting Kendra to additional surgeries, and we knew we would have to change our ideas of how we expected things to be. I think Kendra picked up on our relief that the surgeries were over too. After a very quick recovery, she started to do her best to catch up developmentally. While she had been recovering from the surgeries we had been trying to keep her head elevated as much as possible. We went so far as to have her sleep in her car seat in her crib. Needless to say, she wasn’t able to roll over, lie on her stomach, or push up. About a week or two after the last surgery, she was doing all those things. She continues to amaze us with her progress. She took her first solo steps at 15 months and she is a speed demon behind her walkers and push toys. She has a wonderful sense of humor and a smile that can light up a room. Her vocabulary is growing rapidly. Her first two words were basket and slinky, and her favorite thing to do lately is recite her vowels and other selected letters of the alphabet.

Kendra will be 2 years old next month. She is an incredibly happy and outgoing toddler who certainly hasn’t let blindness hold her back from anything. She loves her gymnastics classes, music classes, swimming in the big pool “like a fishie”, and jumping on any surface that has the least little bounce to it.

Sometimes I do get angry or sad at the way things turned out. I don’t stay that way for very long though because I honestly believe deep in my soul that Kendra has a great purpose on this earth. I’m not a particularly religious person but I know that Kendra was sent to us on September 11th for a reason. She is a constant reminder to me that challenges can be overcome and that there is joy to be found in the simplest of things. Sometimes when I’m feeling particularly philosophical, I wonder whether Kendra lost the use of her eyes so that she could see things more clearly with her heart and with her soul. She is my little miracle and I am thankful for her every day.

From the Editor…Lucy Cusick

Two personality traits that you should understand before you read this article: (1) I am a worrier and (2) I do not sleep well (even when I’m not worried). Now, separately, these two traits are manageable; combined, they are a nightmare…so to speak.

After Josh was born and still in the hospital, I slept fine. Exhaustion ruled. When he came home and was on a two-hour feeding schedule, however, the fear started creeping in. I was still exhausted – and stayed that way through the birth of another child (who inherited my nocturnal traits) – but the exhaustion fed my fears. By the time Josh and Jessica slept through the night consistently, I still had the inner alarm clock. I’d sleep soundly for four or five hours, then toss, turn, and fret until daylight. Would Josh walk? Talk? How would we care for him? Who would care for him if we died? If the house caught on fire while Wayne was out of town, how could I get both kids out of the house. Get the drift? On and on my mind would race.

I’ve read all the articles on sleep. No caffeine after 3 pm; regular bedtimes, yada, yada. I’ve tried housework at 4 am; funny thing, everyone woke up when I turned on the vacuum. I’ve read books, but read myself awake. None of these suggestions helped. I have taught myself not to worry about things I have no control over, like dying, for instance. I get regular check-ups, I wear a seat belt, I don’t drink and drive, I keep my doors locked. Not much more I can do except pray and have a will ready in case my number comes up. I also have little control over Josh’s future. The best I can do is to help him be as independent as he can, find appropriate activities for him, and try not to die early. I have found, however, that if I end the day with a feeling of accomplishment, I sleep better at night. If I make everyday life better, then I feel better, if I feel better, I sleep better. May the circle be unbroken.

Through the years, I’ve learned that I tend to worry when a particular ‘thing’ is on my mind. Before he went to kindergarten, middle school, spend-the-night summer camp, high school. Add to that another child, normal personal financial fears, plus work stress and worries. I am a living advertisement for Sominex.

This summer has been Sleepless in Atlanta for me. Between juggling work responsibilities, keeping tabs on a 15-year-old’s social life, and fretting over the end of Josh’s public school career, I have seen 3 am (4 am, 5 am) glowing from my clock most nights. How will I ever manage life plus driving Josh to Georgia Perimeter? What will he do for entertainment and recreation? Am I spending enough time with Jessica? Does Wayne still even live here?

So I made a list and checked it twice, and this week is better. (1) Call Marta for an application for the Paratransit Van; (2) Call Shepherd Center and find out what they offer in wheelchair sports; (3) Go to Georgia Perimeter and walk his schedule to make sure he knows when and where to go. (4) Let Jessica drive me to Bruster’s for ice cream (that killed two birds with one stone – she got to drive and I got to eat ice cream.)

So when things go bump in the night and the ghost of future threatens my rest, I make another list. Or I go sleep on the couch. Sometimes that works, too.

ME
I can't run fast.
I have braces.
I fall a lot.
I can do math.
I can climb.
I can slide
I am ME.
by Emily Swinn, 8- years-old written and read to her 2nd grade class in May 2004
Emily has a mitochondrial condition.

Matty
by Paul Ladd

My wife Anne and I have two children. We have a typical 12-year-old named Nate and a profoundly disabled 8-year-old son named Matthew, whom we call Matty. When Matty was born, we had no idea that he had disabilities. Before his birth, we had no concept of being the parents of any other kind of child than the “perfect” type who behave and develop exactly as we expect babies to behave and develop. Looking back, we realize that Matty started acting differently before he was even born. He was very still inside his mom; when his due date passed, we were encouraged not to worry. A test was done at the doctor's office to check the baby's response to a buzzer. At first, there was no response from our baby, but we kept trying and finally we had a small response. No worries! What would we worry about anyway? The baby was alive, with strong vital signs. We just needed to get him out and out he came via Cesarean Section; Matty was big and beautiful and seemed strong, but he was quiet.

Matty was a baby who did not make eye contact. We had to wake him in the middle of the night to eat. He seldom cried. He did not hold up his head or roll over. But, different babies develop at different rates. Our pediatrician told us not to worry, to just give him time. We gave Matty time, put on a happy face and waited for him to get started with his development into babyhood. We were deep into our world of denial, and the pediatrician kept our denial alive and well.

Even though I knew that there was something very wrong with Matthew, I refused to accept the idea. I knew that if I passed my hand in front of Matthew's eyes, he would not react and his eyes would not follow. So I didn't do it. I knew that Matthew wouldn't sit up So I let him lay. I could not let this happen to my wife or to my little son Nate. It was inconceivable, and it would not happen to us. My mother-in-law finally shattered my frozen state. It was Christmas time and she was visiting and I caught her crying. I wondered why she was crying. I still cannot believe that I wondered why she was crying. I knew why she was crying. She was crying because it was time to start our new lives as parents and grandparents of a child with disabilities, and that this was a terrifying reality.

Over the next year, we discovered that Matty has a rare muscular disease (mitochondrial myopathy); he is visually impaired, nonverbal and has very low muscle tone. He will not recover and will never learn to take care of himself. Matty will always need his parents and brother to care for him. We live with this great Burden of responsibility, and we worry about Matthew’s future and the strain his care puts on our family, just as all parents of children with special needs do.

Matty is wonderful, an outrageously happy and healthy boy. He wakes up laughing and is joyful throughout his whole day. He radiates joyful feelings and makes us all happy to know him. We are a family made tighter and stronger because of the needs of our littlest member. The adults and children who take time to try to understand and interact with a boy who does not speak or see makes us proud to know that there are such people in the world. Organizations like FOCUS that exist just to support families like ours let us know that there is sincere goodness in the world. We have all discovered that Children like Matty can bring out the best in people and make us stronger that we ever imagined possible. Some people think that the birth of a child with disabilities is a great tragedy. That may be true in a way, but it can also be a great blessing. Through their great capacity for love, Matthew and children like him reveal to us what is most fundamental and important in life. We all have our weaknesses and vulnerabilities, and we all need support and love. Children with disabilities test our committment to our basic responsibility to create a society where each person is loved and has a place.

A Mutual Relationship: Learning from Each Other
by Emma Fialka-Feldman
as reprinted from the fall/winter 2003 edition of "Special Addition: Children with Special Health Care Needs: A newsletter for Michigan Families"

Sometimes as I watch kids with special needs in my high school I wonder, “Are they being treated fairly? Are kids respecting them?” My brother Micah is 19 years old and has some developmental disabilities. I often find myself wondering about what his life was like in high school. He loves to run, watch the news, and surf the web. I am fifteen years old. I enjoy playing my trumpet and playing soccer.

Living with a brother with special needs has been an experience and it continues to provoke new challenges and accomplishments for both of us. I believe I am a more compassionate, understanding, and most importantly more accepting because I am a sibling of “a Micah.” I say “Hi” to anybody walking the streets, just like my brother. I learned that from him. I am a caring person. Not only do I make sure I turn my homework in on time but I also care about my brother.

As my family has learned over time and we do continue to learn, we ask Micah questions that do not involve just a “yes” or “no” answer. Although sometimes it takes an extra few seconds, I try to think of questions like “How was your day?” or “What did you do?” It challenges Micah and allows me to focus on one thing.

The hardest part about being a sibling at this age is hearing classmates use the word “retarded.” When I hear that word, a sharp pain goes through my chest. It hits right at home. It bothers me because when people use that word, they are using it as a put down. Kids and adults don’t realize it is unacceptable to use the “r” word to describe a person or thing. When someone uses the word, I usually tell them that it is not cool to say that and it is unacceptable. I don’t say anything about my brother because I have found that when I do people just say, “I didn’t mean it towards him.” Sometimes I don’t say anything because sometimes I am just too tired of saying it.

Granted, I am not a perfect sister. When I was young I knew my brother Micah was special. He had friends. He was on a soccer team. Everyone seemed to know him. He was my older brother. In the second grade, as I got older I began to understand the “needs” sides of his specialness. I wanted to change him. I tried hard, too. I thought if I helped him with his homework, took him away from the television, helped him with his reading, then he would change and be like the fifth grader he was “supposed to be.” He didn’t.

As I grew older, I became more knowledgeable. I knew more; I realized his special needs were permanent. When I began fifth and sixth grade, I hated having a “different” brother. He was embarrassing. I didn’t like how he stuttered, how he rode a training wheel bike at age thirteen, or how I sometimes was like the older sibling. I wanted a normal brother. I would avoid him. I would go over my friends’ houses instead of my friends coming to my house.

My parents helped me A LOT. My mom would let me talk to her at night, allowing me to let out my frustration. My dad bought a bike without training wheels so it wouldn’t bother me when Micah wanted to ride a bike. This new bike turned out to be not only a match for me, but for my brother. Everyone in our neighborhood wanted to ride his cool bike. He continues to ride it today.

My parents got my brother involved in a lot of activities so he didn’t come home right after school. Some weekends he even went away to youth group events. They also started a “circle of friends” when he was in elementary school, where a group of Micah’s peers would get together and do activities. These made things better. It allowed me time with myself and special weekends with my parents.

Now in high school after going through many phases as a sibling, I have made the realization that Micah is Micah. Yes, I continue to go back to the phase of embarrassment, not understanding, and sometimes I try to change him. But most of the time I enjoy Micah as my older brother. I love how I can discuss politics and current events with him. We play basketball and soccer. We wrestle. I have taught him to be more assertive. When I first began to push him around like normal siblings do, my parents were concerned. They didn’t want me hurting him. Despite their influence I continued to “push him around.” Now when I shove him he gives me a big shove back, and it doesn’t bother me one bit because I know that ALL brothers and sisters fight. And that is the kind of relationship I want to have with my brother.

For resources and information on sibling issues, and to register for the Sib Net listserve, go to www.thearc.org/siblingsupport.

From the Editor....by Lucy Cusick

The day had arrived. The party was planned, the house was clean, the family was here. We had risen early, dressed in our Sunday clothes, and were now sitting in the Cathedral of the Holy Spirit in Decatur. Wayne and I sat separately from the rest of the family. We were the parents of the graduate.

We were early, of course, so we had time to look over the program. We found Josh’s name, we looked around the monstrous church and waved to other parents we had seen for the past 12 years. As the strains of Pomp and Circumstance began and the Lakeside High School graduates began to file in, no tears came. Instead, I thought back to all the IEPs, to all the teachers who had worked so hard (and to those who didn’t work so hard), and to all the hours of homework he had struggled with. We had all worked hard for this day.

After a few speeches, the graduates began filing by to accept their diplomas, and because of the layout of the stage, had to walk by Josh. The graduates in the ROTC program stopped to shake Josh’s hand. The tears came then, and I wished his last name began with Z so that he could greet each one, and they could have a final good bye as they wished each other luck. When his name was announced and Josh rolled up to the principal and accepted his diploma with a big hug, I was so proud - proud of the flounder-headed premie who had to work ten times harder than most students just to manuver the halls in his wheelchair, proud that he hadn’t run over anyone on the crowded stage, proud of his neverending optimism, proud of him.. As Josh enters Georgia Perimeter in the fall, I know I will again watch in wonder as he surprises us all with his ability to succeed, when failure would be so easy.

Josh, we salute you....one more time.

“My name is Mark.

When you look at me,
You will measure me
...by my awareness
...by my response
...by my age,
...by my decelopment
And you will shake your head
and find me lacking.

But, for me, you are measuring
With the wrong cup.
For I have one possession
Which brims and overflows
Beyone all others.

I have my parents’ love.

This cup they give me holds also their
...agony and helplessness
...waiting and hoping
...tears and pain
...aloneness and fear.

But in the end, all these are swallowed up
in the deepness of their love
Which now, in each same moment,
Both lets me go
And will never let me go.

So measure me, if you must...
But measure me, too, with my cup
And you will find me
Full.”

from Go Out In Joy! by Nina Herrmann Donnelley, Atlanta: John Knox Press, 1977.

Please Listen
by Dr. Neil Chadwick
(Reprinted by request from parents at the annual FOCUS education conference)

When I ask you to listen to me and you start giving me advice, you have not done what I asked.

When I ask you to listen to me, and you begin to tell me why I shouldn't feel that way, you are trampling on my feelings.

When I ask you to listen to me and you feel you have to do something to solve my problem, you have failed me, strange as that may seem.

Listen! All I ask is that you listen. Don't talk or do - just hear me. Advice is cheap; twenty cents will get you both Dear Abby and Billy Graham in the same newspaper.

And I can do for myself; I am not helpless. Maybe discouraged and faltering, but not helpless.

When you do something for me that I can and need to do for myself, you contribute to my fear and inadequacy.

But when you accept as a simple fact that I feel what I feel, no matter how irrational, then I can stop trying to convince you and get about this business of understanding what's behind this irrational feeling.

And when that's clear, the answers are obvious and I don't need advice. Irrational feelings make sense when we understand what's behind them. Perhaps that's why prayer works - because God seldom speaks in an audible voice, and He doesn't force His way.

God listens and lets you work it out with His caring assistance. So please listen, and just hear me. And if you want to talk, wait a minute for your turn - and I will listen to you.

Fathers
by Erma Bombeck

When the good Lord was creating fathers, he started with a tall frame.

A female angel nearby said, “What kind of father is that? If you’re going to make children so close to the ground, why have you put fathers up so high? He won’t be able to shoot marbles without kneeling, tuck a child in bed without bending or even kiss a child without a lot of stooping.”

God smiled and said, “Yes, but if I make him child-size, who would children have to look up to.”

And when God made a father’s hands, they were large and sinewy.

The angel shook her head sadly and said: “Do you know what you’re doing? Large hands are clumsy. They can’t manage diaper pins, small buttons, rubber bands on ponytails or even removed splinters caused by baseball bats.”

God smiled and said: “I know, but they’re large enough to hold everything a small boy empties from his pockets at the end of a day, yet small enough to cup a child’s face.”

And then God molded long, slim legs and broad shoulders.

The angel nearly had a heart attack. “Boy, this is the end of the week, all right,” she clucked. “Do you realize you just made a father without a lap? How is he going to pull a child close to him without the kid falling between his legs?”

God smiled and said: “A mother needs a lap. A father needs strong shoulders to pull a sled, balance a boy on a bicycle or hold a sleepy hand on the way home from the circus.”

God was in the middle of creating two of the largest feet anyone had ever seen when the angel could contain herself no longer. “That’s not fair. Do you honestly think those large boats are going to dig out of bed early in the morning when the baby cries? Or walk through a small birthday party without crushing at least three of the guests?”

God smiled and said: “They’ll work. You’ll see. They’ll support a small child who wants to ‘ride a horse to Banbury Cross,’ or scare off mice at the summer cabin or display shoes that will be a challenge to fill.”

God worked throughout the night, giving the father few words, but a firm, authoritative voice; eyes that saw everything but remained calm and tolerant.

Finally, almost as an afterthought, he added tears. Then he turned to the angel and said, “Now, are you satisfied that he can love as much as a mother?”

The angel shutteth up.

Mothers
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructed His angels to make notes in a giant ledger.

“Armstrong, Beth, son. Patron saint, Matthew.”

“Forrest, Margorie, daughter. Patron saint, Cecilia.”

“Rutledge, Carrie, twins. Patron saint....give her Gerard. He’s used to profanity.”

Finally, He passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious, “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter? That would be cruel.”

“But has she patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I do not think that she even believes in you.”

God smiles. “No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps, “Selfishness! Is that a virtue??”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a step ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations!”

“I will permit her to see clearly the things I see - ignorance, cruelty, prejudice, and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in the air. God smiled, “A mirror will suffice.”

Letter of Intent: A Roadmap for Caring for Your Child

Putting together one’s plans for the future of a child with special needs can be a cumbersome task loaded with emotions. A good way to get started is by composing a Letter of Intent. While the Letter of Intent is not a legal document, it can be a roadmap and blueprint—for the courts, caregivers, or anyone involved with your child’s situation—to follow in understanding your child and your wishes for your child when you are not there to carry them out yourself.

In addition to vital information regarding your child’s physical and mental status, the Letter of Intent should include your child’s likes, dislikes, hobbies, recreational and social preferences, food allergies, medications, physicians, medical history, as well as your hopes, dreams, wishes, and aspirations for his or her future. The Letter of Intent should also detail your thoughts on a variety of matters such as dating, religion, sex, future living plans, and academic-and job-readiness skills.

It is very important to record all facets of your child’s medical condition and developmental histories and to provide access to all records. Without proper records and documentation, future caregivers may not know what the important issues were and what interventions and services worked best for your child. By documenting and sharing relevant information, you are ensuring that the same level of care you provided can be provided in the future.

The Letter of Intent can exist in many forms: videos, tape recordings, or handwritten or typed instructions. Any of these formats can be successfully utilized. The Letter of Intent should be updated as your child’s situation, needs, or wishes change so that it stays current.

Depending on the child’s abilities, he or she should have as extensive a role as possible in helping you determine what will be the best course for his or her future, as well as verifying current likes and dislikes. Find out how your child feels about what you have in mind. If this is the first time you have discussed these matters with an older child, you may find that together you come up with ideas and options you had not previously considered.

Emergency contact information
List the names of family members, your child’s guardian, executor of your will, trustee, advocate, financial advisor, vocational contact, government-benefit contact, caseworker, school or work contact, social service organizations or anyone else who is involved with you and your child.

Vital information
List your child’s vital information beginning with full name, (include any nickname that the child is used to being called), date and place of birth, and Social Security number. Also include height, weight, and blood type. A current photo of your child is also useful.

Define your child’s diagnosis
Stating your child’s diagnosis or, if undiagnosed, listing your child’s abilities and limitations can bring the whole project into focus and serve as a framework. With a well-delineated diagnosis or list, you can then move forward with interventions the child currently receives and build in necessary services and supports. A clear understanding of a child’s special needs situation is very important to future caregivers in providing quality lifetime care as well as in meeting his or her immediate needs. Here are some suggestions:

Medical: List all medications the child must take and where they are located in your home. Also, list personalized emergency instructions in anticipation of situations that may arise. All physicians, medical providers, and therapists should be identified to ensure continuity of care for your child.

Behavior: If your child has any behavioral challenges, list typical interventions that have worked in certain situation. This information can be especially helpful in an emergency situation to aid caregivers in comforting your child and avoiding any further upset.

Insurance: Information on all medical insurance policies is should be listed. Include any pertinent facts about private and government programs, such as which type of program, levels of coverage provided, and all policy and group numbers.

Medical testing: Document what type of testing was done and the reasons for the testing. Include a general medical history, including immunizations, allergies, operations, hospitalizations, childhood diseases, and occurrence of seizures.

Feeding: Provide a complete feeding and nutrition history. This should include favorite foods or types of food, time of day when meals and/or snacks are served, amount of food portions, foods your child dislikes, feeding restrictions because of allergies, drug interactions, swallowing problems etc., and other feeding and nutrition factors that are important for your child’s health and well-being.

Values: List your views and feelings about: dating, sex, religion, birth control, marriage, and future care issues.

Living arrangements: Where and in what type of living situation would you like to see your child in the future? Provide detailed information regarding type of housing, roommates, neighborhood, supervision, etc. If you feel your child will be fine living independently, specify this. If you feel he or she will fare better in a group environment, make this clear.

Education: Attach current copies of your child’s individualized education plan (IEP) or family service plan. Provide copies of all recent testing and evaluations. List your areas of concern and successful past interventions.

Assistive devices: List any mobility devices used, when they were purchased, where maintenance information and literature is located, and when the devices may need to be replaced. If your child needs to be positioned in a specific way, or use an adapted seat for transportation, be sure to note this, and provide instructions.

Skill level: What are your child’s daily living skills in money management, cooking, bathing, dressing, toileting, sleep routines, ability to travel independently? If you have begun teaching your young child self-care skills, state that you want your child to continue learning them and list resources that can be used for help in instruction of these skills.

Clothing: List your child’s shoe and clothing size, and any special adaptations that are needed to make clothing comfortable. If your child is still growing, parts of this list will need frequent updating.

School or work situation: Discuss work potential and employment history. Is there a transition plan or a vocational plan in place for when your child graduates from high school? Will your child attend college? If you think your child will want to pursue a professional career, specify which one. Will your child be able to support him or herself financially or will some form of monetary assistance be needed?

Social situation: List all of your child’s hobbies, interests, recreational and social activities, and vacation preferences. Make a separate list of activities, places, and situations that your child either dislikes or is not comfortable with.

Funeral Arrangements: List your preferences for your child’s funeral and burial arrangements.

Contact Information: Make a list of your child’s friends, aides, and helpers and how to contact each of them.

Financial situation: How will insurance, property, investments, or other assets be handled? Indicate who should be contacted, as well as the location of all documents.

Due to the complexity of financial issues, medical and educational concerns, and federal and state laws, you may require specially trained professionals to help you plan for the future of your child(ren) with special needs. Call MetDESK® Specialist Jodi McMahon at 404 601-3530 or Pam Hoppe at 404 601-3529 for a confidential consultation. MetDESK® is MetLife’s Division of Estate Planning for Special Kids.

For more information about this and other related topics, visit the MetDESK website at www.metlife.com/desk or call 1-877-MetDESK (1-877-638-3375).

From the Editor by Lucy Cusick

Every day is a busy day at the FOCUS office! We’re in the midst of planning and registering for Camp Hollywood summer day camp (June 7 through July 16), Under the Stars family fun weekend (August 27 – 29), and Six Flags Day (May 2), while continuing to coordinate support groups, hospital visits, and seven locations of Saturday respite child care!!! The annual dinner, dance, and silent auction is over and the “FORE FOCUS” Golf Classic is May 12; these fund raisers are crucial to the programs of FOCUS!

Every day is a busy day in the Cusick household. We have a high school senior! I’m assimilating all the events and emotions and will write many articles......later. For now, just know that we’re ordering a corsage for the prom (for a date he organized himself!), sending graduation announcements, and preparing for life after high school.

This newsletter article is reprinted from the May/June 1997FOCUS newsletter. It’s one of my favorites, and I’m sure you’ll identify with our experience as you begin to prepare for summer!

I used to dread days off school. When the children were younger, they required more entertaining, more supervision, more energy. Now, at 11 and 7, they enjoy days of nothing, late mornings in pajamas, eating breakfast at lunchtime. They will spend hours pulling all the towels and blankets out and playing fort or flood or some other wonderful, imagination game.

Recently we had two teacher workdays. Great! A break from the routine and homework. First day we do doctor appointments. By the end of the second day, we’re getting antsy. So we check the movies and decide on one. Oops, power chair is on the blink. Dad’s not home to fix it. Push chair has to be assembled. Its okay, we’ll take the walker. He’s supposed to walk as much as possible. We’ll park right outside the door. He can walk right in. He agrees. We can have fun.

Not. The handicapped parking spaces are right outside the theater door. But you can’t enter through the theater door. You must go down to the mall entrance – where there is no handicapped parking – and go through a store. Okay. Fine. We can do that!

Not. We make it halfway to the theater and he’s tired. Okay. Pick him up. All 68 pounds of him. His legs get tangled in mine when I walk. Jessica handles the walker. Get to the ticket line. Line of 15 people in front of us. He stands and leans on me. Jessica bumps the walker into me. I’m getting tense. But we’re supposed to have fun.

Up to the ticket counter. Movie is sold out. I’m fighting back tears. Ticket lady is bored. Jessica bumps me with the walker. Josh collapses. I catch him and tell the ticket lady through clenched teeth that I want three tickets to any child’s movie. Any movie. No, I don’t care if it has started. By golly, we will see a movie. I will not leave. We will have fun.

We get into the theater. Movie is 20 minutes into the plot. It’s okay, it’s a kid’s movie. Surely we can catch up. Oops. Part of the movie is the candy and popcorn, and they brought their allowance so they can get what they want. Both give their orders. I go, leaving them to child snatchers just waiting for some mother to leave them alone. Don’t have what Jessica wants. Back to the theater. She comes with me. We leave Josh for the child snatchers. Back in 70 seconds. I count and watch the door the whole time.

Movie is over. Back to the van. Seems like 20 miles. Everybody walks halfway. Josh stumbles. I catch him. Jessica takes the walker. Bumps me with it. It’s okay. We had fun. My back hurts, but we had fun. I won’t plan another outing for awhile. Should it be so difficult? But we had fun and we sang on the way home.

The Lottery
by Alex Buck

We know we will all have our moment in the sun. Maybe it’s literature or movies, but all of us believe we will break out of the humdrum mold of our parents and achieve some level of distinction. It’s why the lottery holds so much mystique as we grow older and realize we didn’t become professional actors, entertainers or the President. The sights lower some from Madison Square Garden to running the Church Bazaar or coaching Little League, but the dream of uniqueness never dies.

It was always in my mind that I was never going to be one of the faceless crowd, and I was right. My ship came in, I won the lottery twice. That’s how it is when you have two special needs kids. You have beaten the odds, odds even greater than winning the Publisher’s Clearinghouse, and become one of the few, the proud, the owner of a handicapped parking sticker.

With my first, it happened so gradually we were never sure what we had won. She was always a little slower at picking up things than our first child had been. Rolling over, sitting up, grasping things were all much delayed. The bar of expectations slowly lowered over a few years until by age three we realized she would probably live at home with us forever.

With our third child, it was Ed McMahon at the door with the Sweepstakes Check. There was no waiting to see what we had won. He came out of the womb coughing and hacking. Never could swallow and had to be fed by tube. Club feet, facial paralysis, it was the bonanza. We were told at 3 days old he would most likely not see his 5th birthday. You know how each of your children’s birthdays takes you back to the Birth day. You remember what you were doing and feeling at those wonderful moments throughout the day. I dread my son’s birthday every year because it was such an awful day, followed by several awful weeks cooped up in the hospital.

For two years I planned his funeral every single day. Whenever I would have a quiet moment, my mind would drift to it. Thought about the music we would play, what I would say, who would preach. There was a comfort to it, a sense that I was still in control of something. Then two years later a miracle happened. His diagnosis was changed by a doctor looking at the same films and tests who just happened to see it differently. Even though my son would probably never eat food by mouth, he would probably walk, have a full life expectancy and maybe even be able to live on his own. We won the Lottery a third time, but this one felt so much better. Have not thought about the funeral at all ever since that day.

It is a strange thing looking over the fence at those with “normal” (whatever that is) kids. Sometimes the anger wells up when you see how other parents don’t appreciate their children (like you think they should). Rather than a disapproving look, you want them to spend an afternoon at your house changing diapers, tube feeding, trying to connect with two children who can’t speak. Show them that being able to talk and take care of yourself is a miracle. But you know that lack of appreciation for one’s life is something you are not immune to either.

You get treated differently. Usually by strangers who can’t possibly know your story in the fleeting seconds shared. You get hailed by friends and relatives for coping with your situation, but deep down you know you are no different, just your circumstances. It is impossible to relate to what it would be like having three healthy children because it was never that way. There was no accident or illness, just the package they came in.

I often tell myself that my only true disappointment in life came when I realized I wasn’t going to be 7 feet tall and playing in the NBA. Ever since then life has been pretty much an easy downhill ride and, for the most part, that is true. I do find it interesting how we all deal with depression. I tend to bury it in reading books, playing video games or cruising the internet looking for knowledge. My wife will go into a funk that can last for days or weeks. Neither way is better than another; it’s just who we are. So if I become a Jeopardy whiz and champion of Pac Man, you will know I have hit bottom.

We have also been able to explore our capacity for love and the spiritual nature of what we and our children are. It is a club that all special needs parents belong to. There is really no other way for anyone not in the club to know that we would fix our children if we could, but would not trade them for anything.

The people you meet are truly amazing. People whose burdens exceed your own. The parents who adopt special needs kids and choose this life. Those who adopt multiple kids with issues. The record family we have met has 17 children, 12 adopted with special needs. Also the amazing doctors, therapists and teachers who choose to be involved with our children. Some of the most powerful are the strangers in the store whose kind words or small deeds, like letting us ahead in line, can make the most trying outing memorable. All of these people are truly God’s angels whose message of love is inconceivable.

I still read with interest about the Lottery winners and realize how much we have in common. Sudden change in fortune, new friends appearing out of nowhere, seeing the true nature of people about you, divorces, acrimony, new worlds not imagined opened up for you. We have so much in common, except they have the money and we get the good parking spots. Quite frankly, if it meant giving up my children and the incredible things they have taught me and doors they open, I would not switch places.

FOCUS offers programs to families in metro Atlanta and surrounding counties, but children with special needs link families all over the world. This article proves that special needs children have special needs families, and our experiences tie us together, no matter where we live. Alex and his family live in Texas, and we appreciate his sharing his story with us.

From the Editor
by Lucy Cusick

For the last eighteen years, I’ve lived somewhere between dreams and reality - trying to balance ‘what might be’ with ‘what is.’ From the beginning, the doctors would make no predictions about Josh and his future. Cerebral palsy, they said, is the most likely effect from the brain damage he suffered as a preemie and is everything from not being able to hit a baseball to having little motor control. We rolled up our sleeves and went to work; first we learned to care for him, then we began to push him to do everything he could do.

When Josh hit the school system, the responsibility seemed to shift. We set goals for Josh to achieve at school; my job became reinforcing instead of initiating. I was no longer the chief taskmaster; teachers took the lead. Yet, he seemed to make more progress when he was worked with individually. Add other children and the chaos of real life and his success diminished. Or did it? Somehow, his accomplishments became more real when he could be successful amongst the chaos without prompting and coaching. But the gains appeared to be slow; he had to work harder; and he became more frustrated. And were the goals for Josh or for the teacher to accomplish? Who did we hold responsible when he didn’t accomplish a goal - Josh or the teacher? We struggled with his goals - were our expectations realistic? At what point should we let him have some weaknesses and start building on strengths?

Over the years, our dreams have been hardened by reality. We had trouble setting realistic goals at school. Should we concentrate on weaknesses or strengths? He needed help doing so many things; should we fight for a paraprofessional at school? How much accommodations should we insist on? Academics were important, but could he apply academics to everyday life? We learned our rights within the school system; we learned when to request and when to insist. We learned that sometimes we had to be realistic; We had to find the intersection between our dream and our reality. That took years; our dreams were hard to let go, and the reality was hard to accept.

As we enter the IEP season, may you find the comfort zone between your dreams and your reality. Goals are necessary, but work to keep them manageable and realistic. And work in some fun along the way, both for yourself and for your child.

LATEX ALLERGY
By Michael G. Muhonen, M.D. and Myrlee Cuiching, P.A.-C

Allergy to latex is an increasingly significant medical problem. I have witnessed two life-threatening anaphylactic reactions in our institution, and have thus become very sensitive to the importance of recognizing the allergy. Prior to the 1980s, allergic reaction to latex was relatively rare. In fact, the first case to the United States was not reported until 1979. With the advent of AIDS, latex gloves became mass-produced. It is speculated that impurities found in this new generation of latex has been the cause of the increase in latex allergies. To understand why one would react to latex, I will present a brief overview on the origin of latex.

Latex products are derived from the latex sap of commercially grown rubber trees, Hevea brasiliensis. The sap is extracted and heated while chemical preservatives, primarily ammonia, are added to enhance the rubber’s structural qualities. Latex contains low-molecular weight soluble proteins, which are the cause of the allergic reaction. There are at least 10 different proteins, any of which can mediate the allergic reaction. Latex products are made by pouring the rubber into molds, or by forming a coating in a dipped process, as is done with gloves or condoms. Dipped, or very soft, rubber products have the highest content of latex proteins and thus, have the greatest allergenic potential. Cornstarch powder is applied to latex gloves during the manufacturing process to prevent stickiness and give the gloves a smooth feel. Latex protein particles have been shown to adhere to the surface of these cornstarch particles and to aerosolize on removal of the gloves. Once an individual has become sensitized, he or she may experience allergic symptoms when exposed to any product containing latex.

Latex products are common items seen at home and in the hospital. Balloons, rubber balls, pacifiers and other baby items are everyday items accessible at home. Healthcare products that patients may come in contact may include disposable gloves, tourniquets, medication vials, and Band-Aids. Cross-reactions may occur when patients are exposed to certain foods such as avocados, bananas, chestnuts, kiwi, and passion fruit. This does not mean that you can no longer eat guacamole! However, if an allergy to latex is present, and unusual symptoms occur after eating these foods, they should be avoided. In fact, severity of allergic reactions after ingestion of these foods can be similar to those seen in common peanut allergies.

Allergic reactions to latex generally manifest as contact dermatitis, a skin rash, a runny nose, itching and skin swelling. More severe reactions, delayed or immediate, include redness, diffuse bodily swelling, hives, wheezing, shortness of breath, and a racing pulse. These reactions can occur up to four days after exposure to the latex product.
Latex allergies are significant condition-affecting patients with neural tube defects and those who undergo multiple surgical procedures. Studies show that latex sensitivity occurs in up to 73% of pediatric spina bifida patients. In the general population, allergic response to latex is seen in only 6%. Patients who are exposed to latex products early and repetitively are at greater risk for developing allergic reactions. It is felt that intra-operative exposure occurs when latex proteins from surgical gloves are transferred to skin and moist mucous membranes. More specifically, patients with neural tube defects who undergo particular neurosurgical procedures may develop sensitivity to latex when proteins are inadvertently transferred from surgical gloves into cerebrospinal fluid. Other means of exposure include diagnostic tests, examinations, repeated bladder catheterizations, or radiographic studies that use latex catheters.

Diagnosis is made initially by the history. If a latex allergy is suspected, further workup is indicated by an allergy specialist. Latex-specific testing and skin prick testing may confirm the suspicion. These include blood tests for latex-specific IgE antibodies and skin, or radioallergosorbent (RAST) testing. However, a good detailed and accurate patient history is the most sensitive and reliable means for assessing who is at risk.

The most effective strategy in the treatment of latex allergy is avoidance. If you or your child has any type of reaction that is suspicious of a latex allergy, it is then imperative that latex exposure be avoided. Furthermore, if your child has an unexplained rash and continually recurs, testing for latex allergy should be performed. Hospitals such as Children’s Hospital of Orange County (California), where we practice, are well-equipped with latex-free supplies. We use latex-free products when performing procedures on all patients who have any clinical history suspicious for latex allergy. In summary, it is imperative to prevent and minimize exposure to latex allergens in patients at risk for an allergic reaction. If precautionary measures are not taken, the consequences could be severely life threatening.

Reprinted with permission from Life-Line, Newsletter of the National Hydrocephalus Foundation, Volume 24, Issue 4, Winter 2003. www.nhfonline.org

Hurricane Kyle
By Karen Greenfield, dedicated to the memory of Kyle Greenfield

We lived in Florida, where hurricanes are a part of life. Seven years ago Hurricane Andrew swept in, destroying homes, taking lives and futures, and leaving Dade County looking like a war zone. Trees that were not uprooted or blown away were completely defoliated. Areas once green and lush were nothing but broken concrete and shattered glass. Trees trunks were naked skeletons upon the barren landscape, wearing a dead, gray look that offered no color or comfort. Things would never be the same again.

But a funny thing happened. Trees began to look like fuzzy caterpillars, and foliage budded in places where there had been no foliage. Soon an abundance of beautiful wild flowers covered the ground in places where even grass did not grow before. The stripped trees allowed sunlight into previously shady places, touching seeds that had lain dormant in the dirt for years. Fresh rains rinsed away the salt water and left nutrients that these little flowers needed to grow.

Little did I know that our own hurricane would begin in the spring of 1988 when we decided to adopt a second child. We had been married for ten years and were the proud adoptive parents of a three-year-old daughter. We were soon bringing home a three-month-old son. We assumed he was healthy even though he was somewhat weak and underdeveloped; we attributed that to a less than nurturing foster care system. He seemed alert and happy, and he loved to eat!

But things didn’t turn out how we had hoped. Although Kyle was healthy and strong, he didn’t meet his developmental milestones. By age three, we grew concerned when he had trouble with fine motor skills, made no progress toward toilet training, and only spoke in three word phrases; he was never still – the word ‘active’ was a huge understatement! He could reduce any room to chaos within minutes. He knew what he wanted and threw tantrums when he didn’t get it. For instance, we avoided going past any McDonald’s; otherwise, we’d hear the screams of “burber, burber!” Kyle could not tolerate sitting or standing still; he was always on the move.

We started our goose chase for a diagnosis. Kyle had vision problems, so he got glasses. He had moderate hearing loss, so he got ear tubes. A psychiatrist told us that our parenting wasn’t consistent. . . so we went to a geneticist! He said Kyle had the physical characteristics of a syndrome called Mucopolysaccharidosis (MPS). With that mouthful, we went home to wait for the final test results and threw ourselves into research.

All of a sudden, the warm glow of having a new son turned into something very different. Six months later, we found that Kyle did indeed have this very rare, incurable syndrome, MPS IIIA, or commonly referred to as Sanfilippo A, and wouldn’t be with us for long. We were handed a booklet that told us the three stages of this disease. These stages describe the difficult behavior, extreme activity and sleeplessness, and then the deterioration of skills. Somehow, the knowledge was helpful and, at the same time, horrible.

Even with all this information, Kyle still stole our hearts. He was a bright and sunny little boy who had a great influence on many people. We never hid Kyle. We took him wherever we went because he was a part of our family. Kyle loved music, and you could always count on him for a smile that took away all of your troubles. We took the attitude of living for today, and tomorrow would take care of itself. I knew my son was going to die. I just didn’t want him to die without living. Kyle died in 2001, one month shy of his thirteenth birthday.
The storm of our life continues and patterns those famous hurricanes of Florida. We look back at the devastation left behind by losing Kyle; we realize that life will never be the same again. As we feel emptied out and stripped of the hopes and dreams we held onto, we find ourselves laid bare to the elements, exposed in a new way. But just like the aftermath of a hurricane, as we struggle to pick up the pieces and resume some sort of life, we find flowers.

My flower has been volunteering at Kyle’s school and working at FOCUS. He was loved and accepted at these places and loved being there with all the other children. I can help because I know what it feels like to be a parent with a special needs child. I want to share my hard-won skills with other children and parents. I have walked in their shoes and care for their children, not for what’s wrong with them, but for what’s right with them. And, being with them lets me feel connected to Kyle, as if his spirit is still present. Kyle may no longer be in this world, but he is still making an impact on hearts that need strength and comfort and inspiration.

I never want to experience another hurricane. Nothing will ever make it all right for me to have lost a child. But I do know that there are things I can be thankful for in the aftermath. And though I love the shade, I also love the flowers that the sun brings up.

Keeping the Balance - The Parent Advocate and the IEP process
by Peggy & Lou Ramos

As parents of a 6-year-old autistic son, with severe language delays, we are challenged with the role as parent advocates. This role has many responsibilities that demand many different skills to effectively speak on behalf of our son. This role can overwhelm our emotions and time, causing exhaustion and burn out. The times we feel we are successful at it, which is not often, are times when we have worked hard at balance in our lives. We have taken care of our family and ourselves. We believe this balance is important for all families, but it is critical for parents of a child with a disability because of persistent demands on the family’s time and emotions. We believe this is the critical first step in the ongoing effort and journey to become an effective advocate for your child, especially in the IEP process.

We highly recommend reading the book From Emotions to Advocacy (FETA) by Pam & Pete Wright which gives tips for taking care of yourself, along with other information we will refer to, as a great resource in this balancing effort.

By keeping our balance we can better understand and focus on how our son’s disability affects his ability to learn. Then we will be able to work on sustaining a productive relationship with the school, which is the beginning to an effective IEP planning process. The following steps, we feel, are critical to the process and your relationship with the school.

1. Work on building a relationship with a school as a team player and model the behavior you want others to have as members of the team, i.e. organized, flexible, open to new ideas, educated about the disability etc.

2. Become an active participant in the IEP meeting by educating yourself on your child’s disability, educational methods, and tests and measurements that are used to evaluate your child’s progress and regression. Then as a team you can determine your child’s educational goals.

3. Stay organized. Organize your child’s evaluations, IEPs, and current literature into binders to give you a focus and clear understanding of your child’s disability and progress. Include in your records a copy of the school’s records. For information on maintaining a “Document Management System,” please refer to the FETA book.

4. Experience the school day through observation and volunteering so you can better understand the demands on teachers’ time, resources, and training. Help the staff understand the demands on your day, time, and resources in order to come up with a realistic plan for home enrichment.

5. Be informed of the laws that pertain to students with disabilities so you can advocate for access to a “free and appropriate public education”(FAPE) in the “least restrictive environment”(LRE)

According to Leslie Lipson, Staff Attorney for the Georgia Advocacy Office, “ to receive special education services or accommodations, a child must be eligible under at least one of these two federal laws: The Individuals with Disabilities Education Act (IDEA) or Section 504 (of the Rehabilitation Act of 1973). Children whose disabilities seriously hinder them from making progress in school are entitled, under IDEA, to receive “a free and appropriate public education”(FAPE) in the” least restrictive environment”(LRE). IDEA benefits end when the student graduates high school or turns twenty-two, whichever happens first. Section 504 stresses the concept of equal opportunity. Children who show a “physical or mental impairment, which substantially limits one or more life activities” are eligible for section 504. IDEA is traditionally viewed as having more procedural protections for parents and more available services for children.”

6. To succeed in providing FAPE in the LRE, parents need to prepare ahead and work with the team on an education plan with specific and measurable goals that can measure progress. Please refer to the chapter “Smart IEPs” in the FETA book.

7. Get independent evaluations for medical/developmental, rehabilitation and/or psychological assessments to more fully understand your child’s disability and strategies to cope with it at home and at school. In situations where parents do not agree with school evaluations, independent evaluations offer an objective assessment and/or second opinion of the child’s performance.

8. If you believe the school system and/or school professionals are not acting in good faith, put your concerns in writing to the school system and be prepared to support your argument with evaluations, tests, and reports as needed. If you feel your concerns are not being heard, seek legal advice, and emotional support during this process, to stay as objective as possible and care for yourself.

All these steps are dependent on good communication with your team, both verbal and in writing. Be accessible, ask questions, listen well, and stay informed. All these work toward developing relationships for the future.

Resources

Wright, Pam & Pete. From Emotions to Advocacy-The Special Education Survival Guide. Hartfield, VA: Harbor House Law Press, Inc., 2002.

Wright, Pamela & Peter. Wrightslaw: Special Education Law.
Hartfield, VA: Harbor House Law Press, Inc., 2002.

Peggy participated in the Parent Leadership Support Project that the Georgia Advocacy Office offers to provide the best information on the complex issues surrounding Georgia’s educational system. The goal of this project is to raise competency levels of people advocating on behalf of students with disabilities. The next session begins in January; for further information and an application, please contact Leslie Lipson at plsp@thegao.org

BASEBALL FOR ALL
by David Monde, dmonde@comcast.net

Some of my fondest childhood memories are of playing Little League baseball. I always dreamed of teaching my son or daughter how to bat, throw and field, and anticipated the joy of sharing my love of baseball. When our first child, Max, was born with cerebral palsy and limited vision, I thought I'd never realize those dreams. Like everything else I thought we'd never be able to do with Max, though, I soon learned that with some flexibility and modifications, Max can meaningfully participate in almost any activity - - including baseball.
For Max and our family, the adapted baseball programs offered by The Northside Youth Organization, based at Chastain Park, and the North Metro Miracle League, in Alpharetta, have provided Max the opportunity to play baseball and build friendships - - even if Max uses his walker and needs help throwing and batting. Max has helped enrich the lives of his "buddies," and taught them the importance of looking beyond the wheel chairs, walkers and other things that on the surface, make children with special needs seem different. While safety is paramount, these adapted baseball leagues, and others like them around Atlanta, allow kids with special needs to to fall down, get dirty, strike out and hit home runs - just like any child. The confidence and excitement you see in the faces of Max and his teammates is priceless.

Information about some of the adapted baseball leagues in the Atlanta area is listed below. Email me or call the FOCUS Office for additional information.

Christopher League/Northside Youth Organization. The Christopher League, named in memory of Christopher Rousseau who played for many years, is for children aged 5 - 18 with physical or mental disabilities, and is run in conjunction with NYO's youth baseball program on a "buddy system." Participants range from players who can hit, throw and run with guidance, to players who are in wheelchairs and need assistance with all aspects of the game. The League fields two teams who play each other, and against other local teams, on an accessible field. And we do not keep score. The main objective is for every player to have fun and to socialize and develop bonds with children their own age - Everybody hits, everybody scores. Games are typically scheduled on Saturday mornings in the spring from 9 to 10:30 at Chastain Park. For information or to signup, contact Leo Rose, at (404)954-9823 or at lrose@swfllp.com.

North Metro Miracle League, Alpharetta. The North Metro Miracle League (NMML) is an adapted baseball league for children with disabilities, with Spring and Fall seasons. All games are played on Saturday mornings at Hobgood Park (6688 Bells Ferry Road) in Woodstock, Georgia and at North Park (13450 Cogburn Road) in Alpharetta. For more information: www.northmetromiracleleague.org or contact John McLaughlin - Director john@northmetromiracleleague.org or (770) 777-7044.

Rockdale Miracle League, Conyers. The original Miracle League, based in Conyers, with Spring and Fall seasons. Diane Alford, Executive Director - diane@miracleleague.com or Diane Alford (Office) - 770 760-1933.

Challenger Little League. A slightly modified baseball game for children with all types of disabilities. Two inning games with each batter batting once per inning. Batters hit off tee or are pitched to by a buddy using a soft baseball. Each player is paired with a buddy, usually age 11 or 12 and from a little league team. Eligibility: 5 – 18 years or completion of high school. Locations throughout Atlanta: (1) Buckhead Baseball, Frankie Allen Park, Atlanta (www.gobuckhead.com or contact David Brown, 404/995-0550); (2) Murphy Candler Little League, Dunwoody (www.murphycandler.org; (3) Sandy Springs Little League, Morgan Falls Park, Roswell (www.ssysbaseball.com or Rick Thompson 770/569-1820); (4) Ocee Park Little League, Alpharetta (www.oceepark.com or Sheryn Cohen, 770/664-5569)

From the Editor, by Lucy Cusick

FOCUS began 20 years ago when two children shared a hospital room. The parents of these children found support, friendship, and courage in each other; they learned from and leaned on each other. These children changed the lives of two couples; because of them, FOCUS exists to support over 1700 families in 2003.

To say that Josh changed my life is a real understatement. Eighteen years ago, I was a microbiologist at the Centers for Disease Control, my husband Wayne was also rising in rank with the federal government. We had just purchased our first home, we were expecting our first baby, we even had a dog!! We were ready for “and they lived happily ever after.”

Babies Can’t Wait didn’t exist then. Juggling his therapy and specialist appointments was a fulltime job, which as a microbiologist, I was not qualified for!! We muddled through and re-created the wheel for awhile, until we found friends in this unknown world.

Because of Josh, I found these friends through FOCUS. Friends who called just to see how we were doing. Friends who could tell me what all the acronyms meant. Friends who told me to ask lots of questions. Friends who assured me that I was ok, even when I cried all day. Friends who helped me see beauty in a baby with a head like a flounder and encouraged me to celebrate the smallest of accomplishments.

Because of Josh, I changed careers. I left the world of microbes and threw myself into his care. After he settled into his school career, I began a new career, joining the ranks of nonprofits here at FOCUS. At FOCUS, I could put my knowledge to use; I quickly learned that a big heart was also a plus. We hear so much pain and fear in a parent’s first phone call; in a few months, we hear that same parent talk with confidence about seizures, deeming waiver applications, and G-tubes. Those parents then help new parents. We’ve grown from offering living room support to offering support groups in 10 locations; to offering respite on Saturday to over 140 children each month; to offering summer day camp to over 250 children each summer; to reaching 1700 families with support and education.

The FOCUS office staff has grown to six part-time employees who left a career because of a child in their family. Six folks who love and care for families. The FOCUS board of directors is composed of 15 business men and women. People who volunteer their time to help families. Because of a child.

Because of Josh . . . and because of every FOCUS child . . . we begin a new year of promise and hope and vision. We wish you every promise and hope and dream for 2004.

As FOCUS begins another 20 years of support, we need help from each person who receives our newsletter. We reach over 1700 families; we know there are thousands more families who need information and support. To reach more families with more programs, please consider helping FOCUS with our fund raising efforts by calling Lucy or Joy at FOCUS.