FOCUS - support for children with disabilities or medical needs

“THE TIGHTROPE” by Melissa Bernardino

It was another routine ultrasound, one of many I’d had through this pregnancy. I knew we’d see two arms, two legs, a straight spine, developed brain, kidneys, bladder, etc. And I also knew, with excitement and anticipation, that we’d see, or rather not see, the key piece that would identify whether we were having our third daughter, or first son.

And so I was totally unprepared for the tone of the sonographer, or the way she carefully chose her words during that visit. “It’s not what I see that bothers me, it’s what I don’t see.” “I’m sure everything is fine, but I’d like you to see a Perinatologist tomorrow for a more detailed view of the baby.” “It’s a girl.” She spent way too long looking at the baby, a puzzled look on her face, a whispered reassurance that everything was probably fine, but she couldn’t be sure.

Well, it wasn’t fine. Over the next few weeks, I found out that my baby, my yet-unborn-daughter Ava, had a severe and complex heart defect. It was over the next few months that I began to realize the full extent of this defect, and the uncertainty of having a child with a defect that was finally classified as “rare and atypical.” It was many, many more months before I realized that her development was significantly delayed, that she had bleeding on the brain and seizures, that her heart had stopped twice, that her defect was “unrepairable,” and that she was, and likely would remain, a special needs child, assuming she even lived. She endured four heart surgeries before she was nine months old, spent almost half of her first year in the hospital, was quarantined at home the rest of the time to protect her from germs, and struggled each day just to survive.

Somewhere along the way, I realized I was walking along a delicate tightrope. I had left the platform where I lived a very comfortable life with a husband, successful career, and two healthy children. I had stepped out on a very thin wire toward another platform, one so far in the distance that I could not even see it. It is this platform that held my new life, one of Babies Can’t Wait, IFSPs, IEPs, Katie Beckett, monthly (and sometimes weekly) doctor’s appointments, repeated hospitalizations, numerous therapies, an uncertain future, and a host of other issues I had just begun to tackle.

Since then I have walked this tightrope daily, longing at times to turn back to my life the way it used to be, but moving quickly toward my new life, my “special needs” life. My walk is one of uncertainty, fear and doubt. On good days, I hit my stride and move forward effortlessly, easily, with a smile on my face, anxious to reach the platform to establish my “new normal.” On other days, I totter and sway, wondering whether I should stop, move forward, move backward, or jump off.

I stay balanced between my “old” carefree life, and my “new” life that includes worry, doubt and uncertainty. There are times when I wonder if I can take another step. But then, out in the dark, I can see and hear and feel the encouragement of the crowd. My family, friends, neighbors, strangers - the people who shout for me to make it - give me the strength to accept what that day has given me, and the courage to look forward to the next. They don’t want to see me turn back, nor do they want to see me fall. So they listen to me, pray for me, and help out when they can. They give me the strength to stop, regain my composure, and move on. For those times when I lose my balance and fall, there is my FOCUS safety net, ready to catch me, gently stop the hurting, and lift me back onto the tightrope to continue my journey.

Finally, after four years, my walk is getting easier. I’ve learned to enjoy the journey itself, no matter how unstable or uncertain, no matter how many times I feel that I’m losing my balance. I still have fond memories of my old life, but I have even more of my new life, my “now” life filled with special challenges, unique obstacles, and indescribable rewards. And somewhere along the way, I’m not even quite sure when, I realized that my platforms, once worlds apart, were converging to a single platform. I no longer wish for my old life, so far in the past, and I’ve learned not to dread the future. I’ve learned that all the people, all the obstacles, all the issues, and all the rewards have come together to define what is my life, and so I continue walking my tightrope each day, knowing that my safety net is there for me.

It’s a walk we all make, each of us in our own way. To FOCUS, I thank you for being my safety net. To each of you, I thank you for being my encouragement and support. I know I could not make my walk without you, and I want you to know I’m cheering for you on yours.

You Might Need a Social Story If……. By Celia Lawton

Most people in Atlanta are familiar with Jeff Foxworthy, the local comedian who has built a career around the art of telling redneck jokes. Of course not everyone appreciates his humor, but if you’ve ever been involved in or witnessed a redneck experience of any kind, it’s hard not to chuckle at such one-liners as these:

You might be a redneck if taking your wife on a cruise means circling the Dairy Queen.

You might be a redneck if you think the Nutcracker is something you did off the high dive.

Now with all due apologies to Mr. Foxworthy, it occurs to me that a similar kind of thinking applies to children with social limitations. Furthermore, just as real redneck experiences help one to better appreciate redneck jokes, parents and professionals who care for children with cognitive disabilities will particularly appreciate the following “social story” scenarios.

Your child might need a social story if he has ever picked up and eaten a French fry off the plate of a complete stranger in a restaurant.

Your child just might need a social story if he has a tendency to tell every woman with a husky-type voice that she’s Ursula the Sea Witch (the villain from The Little Mermaid).

Your child most definitely needs a social story, if after watching a Richard Scarry video in your hotel room, he places a 911 call to the front desk and tells the attendant that there’s a fire at Charlie’s Bakery!

But just what is a social story anyway? Simply stated, a social story provides information about a situation that might be difficult or confusing to a child. Generally speaking, a social story provides some basic facts about what happens in a particular situation and then outlines the types of actions that a child is expected to demonstrate in that situation. For example, here is a story that I wrote for one of my children after he had a difficult ride home from school one day:

Being a Good Bus Rider
It is important to be a good bus rider. A good rider uses an inside voice on the bus. A good rider also keeps his hands and his feet to himself. Sometimes it is hard not to touch other people and to be quiet on the bus, especially if I am hot, scared, or unhappy. If I am feeling unhappy, hot, or scared, I will tell Mrs. Pat or Mrs. Alma how I am feeling. Mrs. Pat and Mrs. Alma can help me so that I will have a quiet voice, gentle hands, and gentle feet on the bus. If I remember to do each of these things, I will be a good bus rider!

Carol Gray, an autism consultant for the public school system in Jennison, MI., is the person who is credited with developing the social story concept. Although she first designed social stories for children with autism, the approach has been successfully used with people of all ages and varying cognitive skills—including students who are considered typically developing.

Anyone can write a social story, but it is helpful to gain some familiarity with what a social story looks like, as well as some general guidelines for writing a story. Most special education professionals are familiar with the concept and can share information with you on how to write social stories or on how to obtain pre-written stories for general situations. There also are many resources available on the Internet, including Carol Gray’s website, www.thegraycenter.org.

This might seem like a lot of work to you and therefore you might be wondering if a social story can really make a significant difference for your child. The best way to answer that question is to consider what usually happens when your child goes into a new or confusing situation. Does he have great difficulty interacting with peers and other people? Does he get anxious any time he goes to an unfamiliar place? Does he “act out” when he is placed in a high sensory environment? Is there something in particular that always causes him stress? If your answer is “yes” to these types of questions, a social story can definitely be of benefit.

As an example, I would like to share the following real-life experience with you. Several years ago, my husband and I planned a family weekend in Chattanooga, TN. He took off work one Friday and we spent an enjoyable day at Lake Winnie, a wonderful family amusement park located close to Chattanooga. Our plans were to spend the night at a local hotel and tour the aquarium the next day. We checked into our room around 7:00 p.m., and because this was the first time that our kids had ever stayed in a hotel, they went crazy. They jumped on the furniture, pulled all the sheets off the bed, and kept opening and shutting the closet doors.

That was bad enough, but when bedtime came things got worse. Although they had a great time ransacking the hotel room, it never occurred to them that they would not be going home to sleep—even though we had told them several times that we would be staying in the hotel that night. When we turned off the lights and tried to put them in bed, they became quite upset and began to cry. Their language was limited at the time, but they did manage to communicate to us that they wanted to go home. Imagine the pandemonium in that room and our elevated stress level! Finally, at midnight, my husband and I packed up our stuff and our kids, hopped in the van, and headed home.

If I had prepared a social story about how to stay at a hotel, I am certain that our trip would have had a very different outcome. First of all, I would have read that story to my children prior to leaving our house. This would have enabled me to introduce the scenario to them in a calm, familiar environment. Second, because my children are visual learners, the words and pictures in the storybook would have helped them process the message better. Third, I would have read that story to them again prior to checking into the hotel, to reinforce the fact that they would be staying in an unfamiliar place for the evening. Finally, I would have taken the story into the hotel room, so that I would have had a tangible resource to discuss appropriate behavior, once they started to spin out of control. You can bet that since that time, I have used many social stories for out-of-town trips and difficult situations!

Of course, it’s impossible to put together a storybook for every single circumstance your child experiences, so consider using a social story for important upcoming events and for situations that routinely cause your child problems. An example of an event might be an out-of-town trip at the holidays, a visit to the doctor, or a first day at school. Examples of problem situations include getting a haircut, playing nicely on the playground, going grocery shopping with mom and dad, or a holiday meal at a friend’s house. The important thing to remember is that you are giving your child a visual tool to help him better understand a difficult situation, and that’s always better than “winging it.”

When you “wing it,” generally all you can do is give verbal instructions and be prepared to get the heck out of Dodge if things get too bad. Or worse yet, you might have to ride it out through all the chaos that your child is experiencing and creating—and that’s particularly difficult if other people are around. After all, most people will not have any knowledge about you or your child’s unique challenges. Instead, they will see your child eating a French fry off a stranger’s plate or they will be answering his 911 call for Charlie’s Bakery, and mistakenly assume that he is being raised by a family of rowdy, unruly rednecks!

From the Editor . . . by Lucy Cusick

At the risk of sounding trite, I have discovered something quite important as a parent of a child with special needs: it really does take a village when you have a child with special needs. When Josh was our only child, Wayne and I managed quite nicely with little help – we had no one else to tend to. We struggled, but we learned to juggle work, home, child and doctors.

But after the second child was born, we suddenly realized that we needed more help. Since we didn’t have any family in Atlanta, we at least needed ‘emergency’ help until grandma could get to us! We had a wonderful neighbor who was always willing to roll out of bed in the middle of the night and sleep on the sofa if Josh went to the hospital in the middle of the night. But what happened if both of us had to be at the hospital during the day or if I had a meeting at school for Josh or if, God forbid, I wanted to do something with Jessica without Josh!! I needed someone available to care for the other child. Our best sitters were teachers and paraprofessionals so they weren’t available during the day. Wayne was able to take off work some of the time, but he couldn’t always be available to pick up the pieces. At some point, you just plain need someone who is willing to give a couple of hours.

When Josh was five (Jessica was about two), I joined a babysitting co-op in our neighborhood. The co-op worked on a point system – a point for every half hour you kept or left your child. I wasn’t crazy about the idea – when would I ever find time to keep someone else’s child??

The co-op was also my first experience in the world of ‘typical’ moms; I had shied away from playgroups with Josh – I just couldn’t deal with that emotionally. But now I needed playmates for Jessica, moms who would pitch in and help with Jessica, even with Josh. That added to the village that helped me when I needed extra hands. I arranged co-op times during Josh’s therapies so I could pay attention to therapy instead of playing in the waiting room with Jessica. I offered to co-op children on non-therapy days so I could rack up the points to use when going to lengthy appointments with Josh. I even found friends who were very willing to keep Josh – I just had to ask.

But my village wasn’t created overnight – it took thought and reciprocation. I found – through neighbors, church and the co-op – that most were willing to help – just as I was willing to help them through a bad time. I have babysat, driven extra carpools, made dinners and run errands – and in return, I have received babysitting, rides, dinners and groceries, all just with a simple “Help.”

Who is in your village? If your child has upcoming surgeries or reoccurring hospitalizations, think ahead and build your support system now. Learn when to say (and accept) help and when to make dinner for the neighbor who needs a boost.

The Journey by Kathryn Chambless

We embarked on a special journey on September 24, 2000 when our precious son, Zachary was born. I had a normal pregnancy and normal delivery. I was so pleased that he took to nursing right away and didn't get whisked away to the Special Care Nursery as his sister Abby had been two years earlier because of an infection she contracted during delivery. We went home two days after he was born to begin our life as a family of four.

But we started seeing signs that Zachary's development was delayed when he was about four months old. I remember telling my mother over the phone about how he just didn't seem to hold his head up like Abby did at that age. He was a BIG baby and I decided that he just must not have the strength to move all that head and weight around. But it still worried me.

Then came the day that I'll never forget - March 27, 2001. This was the day of Zach's six-month well baby visit and the day our whole lives changed. Zach's pediatrician was immediately concerned about his low muscle tone and that he not was not even attempting to roll over. The doctor suggested that we see a neurologist, a geneticist, have blood work drawn, and call Babies Can't Wait. Whew! I felt like I had been hit over the head; this was just too much to take in at one time. Needless to say, I was overwhelmed.

We followed the doctor's orders and started on a journey of regular therapy appointments and doctor's visits. Zachary started meeting some milestones like rolling over (8 months), sitting up by himself (13 months), walking (20 months). But it was obvious that he was very far behind both physically and cognitively. And he still is. Zach will be five years old in September and his only diagnosis to date is Developmental Delay. He uses a couple recognizable words and is consistently progressing with more sounds and signs. Zachary is a high-energy child who wears me out on a daily basis. But have I mentioned how happy he is? He takes such great delight in the simplest things; balloons in the grocery store, puppies and kittens in commercials on T.V., splashing and blowing bubbles in the pool or bathtub, and stealing his sister's favorite stuffed animal and running like crazy away from her. He truly is a shining light in our home.

Our journey has led us to many different places: a neurologist, a geneticist, a Feldenkrais practitioner, Babies Can't Wait, Social Security, DFCS, FOCUS 5 & Under Share Group meetings, an osteopath, Coralwood School, Saturday morning Respite, Camp Hollywood, an environmental physician, a 24-hour video monitored EEG, countless PT, ST, and OT appointments, hippotherapy, oral motor therapy and, last but not least, "just playing with my big sister Abby" therapy.

Lately, our journey with Zachary has taken us down a different path. Last fall, he started having seizures. Aside from the trips to the emergency room for a cut above the eyebrow or on the chin, Zachary has never required medication. The seizures were very mild in the beginning, but they started increasing in frequency and severity a few months after we started the first medication. Zach started having many tonic-clonic (grand mal) seizures resulting in many trips to Scottish Rite and calls to 911. We just never knew when they were going to happen. I was nervous ALL of the time and didn't want him out of my sight. Not surprisingly, it was a fellow FOCUS parent who helped to lead us to the Children's Epilepsy Center at Scottish Rite. With increased medication and constant monitoring, Zachary has not had any seizures for a month now and I'm breathing easier again. I'm not naïve though and I know this seizure path is a long one with lots of bumps ahead. But we continue on.

So, what has gotten me through these difficult years? Quite simply the answer is: our faith, our family, our friends and FOCUS. As a parent of a special needs child, it doesn't take much to feel isolated and all alone. We all know that there are good days and there are bad days. And I for one can get stuck in these bad days. I'm human! But then I will get a call from one of my fellow special needs parent friends or I receive the FOCUS newsletter in the mail, or I'll attend a Share Group meeting. I'm constantly reminded that I'm not alone on this journey. Do I know where this journey will take me? No I don't. And honestly, I don't think I would want to look into a crystal ball if it was presented to me. Instead, I will continue down this path without really knowing where it leads. And I don't feel alone. Thanks to FOCUS, I've met so many fellow travelers who share the journey with me. And for this, I'm extremely grateful.

Music in the Morning: A Good Start to Every Day
by Diane & Jim Tebbel

Last school year started out much like previous years for our kids Catie (grade 4) and Eric (grade 5). Their morning routine was usually to: get out of bed on the 5th or 6th call, have breakfast, sneak back to bed until caught by Mom or Dad, sit down with a book until caught, get dressed (with lots of frantic reminders) until rushed out the door, late-as-usual again. Kids are amazing with their abilitiy to procrastinate while getting to school! The hectic morning often left everyone frazzled for the rest of the day.

Everyone loves music at our house, and now that the kids are older, some of our music likes even overlap! For this reason, Jim had subscribed to the Rhapsody music service through Comcast, our internet provider. For $10 monthly, Rhapsody gives access to over a million songs. Playlists can be built of any mix of songs, and can be burned to CD for $0.79 a song. (Rhapsody is just one of several music services on the Internet; others include Apple’s iTunes and Walmart.com.) For Diane’s ride to the FOCUS boat trip on Lake Lanier last year, Jim surprised her with a CD of Boat Songs, including favorites by Jimmy Buffet, the Beach Boys, and others.

Weeks later, after several frantic school mornings, we discussed the idea of a morning soundtrack to play while the kids get ready for school. The morning songs had to be tolerable and up-lifting for both parents and kids. (No Neil Young or Janis Ian.) We chose ten songs, for a total CD time of 47 minutes. I would play the CD as I wakened the children for the first time; the first song is “Wake up, Little Susie.” By the end of that song, they learned to be out of bed with their feet on the floor. The next two songs were songs to eat breakfast by: “Don’t Worry, Be Happy” and “Lean on Me.” Steve Winwood’s “Higher Love” was the cue for them to be back upstairs to get dressed. If they really wanted to get back into bed, they could, but only until the end of Marvin Gaye’s “What’s Going On.” As Elvis Costello finishes “I Write The Book,” the dressing should be finished. If the shoes aren’t on by the time “Big Yellow Taxi” is finished, Diane began to fuss. The finale song was Buster Poindexter’s version of “Hit the Road, Jack!” We were thrilled to find the kids hurrying to get their stuff together, saying “Mom, come on! ‘Hit the Road Jack!’ is almost on.” The kids got to school on time, everyone was happy and relaxed, and the nagging mom was gone!

This summer, we played the morning music to get the kids up and ready for camp. Both the kids complained that they got up thinking they were going to school. So we made a CD to use for camp mornings!

This year as Eric starts middle school and Catie is in her last year of elementary school, the kids will have different-enough schedules that they each want their own set of songs to get them up-and-out of the house. This has been a nice way to set a routine for the kids and also to introduce them to some of their parents’ favorite music. It’s nice sometimes to be listening to the radio somewhere and have one of the kids point out that they are playing one of our songs.

We are looking into mixing CDs for other occasions such as a birthday-party sleepover and the summer vacation road-trip to the beach. Diane even wants a CD to play while she cleans the house!!!

From the Editor by Lucy Cusick

The arrival of August can only mean one thing….yes, FOCUS Mom’s Day Off on Lake Lanier!! Just in time to take a break from the back-to-school craziness, FOCUS moms set off for a relaxing day on the most beautiful houseboat on the lake.

This event is one of my favorite FOCUS events, probably because it’s the easiest event!! We took paper goods, nametags and Dramamine, and eagerly awaited the delicious food that moms brought to share. For five hours, we laughed, ate, laughed, sunned, and enjoyed the freedom. The captain of the boat took us for a cruise around the lake and kept the boat music playing. For a few hours, our world was luxurious, full of calories and girl talk.

This year, I spent time with several moms while we cruised, catching up with their children and their lives. We discussed job situations, pending surgeries and school anticipation; we talked about where we’ve been and where we hope to be in a year.

I was struck with the sense of camaraderie among moms who really didn’t know each other well. I heard peals of laughter and saw sympathetic shoulder pats. I felt privileged to be a part of this group who dedicate so much to their children and families; Thanks to our sponsor for contributing the beautiful Amistad for the day and to our moms who continue to amaze and inspire me.

From the Editor
by Lucy Cusick

Albert Einstein said “There are only two ways to live your life: One is believing that nothing in life is a miracle. And the other is believing that everything in life is a miracle.”

Now, I experience a miracle every time I flip a light switch or answer my cell phone. Doesn’t take much for me. Technology amazes me and I don’t even pretend to understand batteries, cell towers and hard drives.

I also recognize other miracles - fireflies, oceans, and hummingbirds. I don’t take time to ponder them - who has time to ponder? But I do see other miracles that take my breath away - our very special children, counselors and volunteers at Camp Hollywood. I see two children in wheelchairs, grinning and holding hands; a counselor dancing with a scarf; a volunteer helping a child hold a paintbrush. I see smiles, hear giggles and feel the respect and acceptance. Every day at Camp Hollywood is a miracle.

Choosing to live life as a miracle takes positive thinking, creative dreaming, a little energy and occasional re-grouping, But not believing at all is giving up. Hold your miracle tightly and ponder.

Understanding and Managing Anger
Kathleen A. Platzman, Ph.D., Licensed Psychologist, FloortimeAtlanta (floortimeatlanta.com)

Parents of Special Needs children have a lot to deal with (what an understatement!). Big, overwhelming, even catastrophic feelings within us can be the rule, not the exception. I think that by looking at one emotion, anger, we can better understand ourselves and have more to offer our children and our community.

Anger is universal and normal. Everyone experiences it. But it can be a powerful and upsetting emotion and get us into a lot of trouble. This is because expressing anger can hurt others emotionally and physically. It can scare others and make them avoid us. It can also get us labeled as “trouble makers”. But anger also serves many positive purposes. It allows us to express ourselves, it can be a powerful motivator of our behavior, it helps us cope with frustration, it relieves tension, and covers our vulnerabilities. How we express anger depends on many things including age, family patterns, developmental level, sensorimotor capabilities, available resources, society’s expectations, peer models, and temperament.

Obviously, some of the ways in which we express anger can be dangerous or harmful. However, NOT expressing anger also has many painful pitfalls. In our society we have an epidemic of stress-related illnesses and stress can be the result of unexpressed anger or “anger turned inward”. Unexpressed anger means that others won’t truly know us. This in turn leads to inadequate social support needed to cope with our feelings and circumstances. Stuffing down unexpressed anger inside us sometimes shows up as over-reactivity. This means that something little will open the floodgates of anger and our reaction will seem out of proportion to others (even to ourselves!). Eventually unexpressed anger can lead to Anxiety Disorders or Depression (just to name a few things).

So what is “normal” and “not normal” regarding anger and its expression? Author Meg Eastman (Taming the Dragon, 1994) states that anger is in a “Danger Zone” when its level/intensity is too high, its duration is too lengthy, or its consequences too dire (e.g. disrupting family or occupation, hurting others). Being in the “Danger Zone” is a sign that one needs some new skills to deal with anger or new situations that don’t provoke anger.

So one of the first things to do if you think you are in the “Anger Danger Zone” is decide whether it is YOU, the SITUATION, or BOTH. If you are angry all the time because you are living with an impossible situation, then you need to take steps to change that situation if possible, or find out what aspects of a given situation are changeable. If the situation cannot be changed, then you are left with the task of changing yourself. That often seems a lot tougher than changing the situation!

So the next thing to do is pick up the phone and get some help from friends or professionals. In addition to increasing your social support and talking to a counselor or psychologist, there are a lot of “anger and stress management” books and support groups out there.

Accepting Peter
by Pat Olney

After a rocky road of nearly 16 years, I think I have started walking malong a smoother surface. My son Peter has multiple disabilities affecting his cognitive as well as motor skills. He uses a manual wheelchair and a communication device or "talker". I would like to share with you my experience of raising a child with special needs.

Peter was born after a normal, healthy pregnancy. The amniocentesis was normal, as well as an extensive ultrasound. We knew that we were having a boy. My membranes ruptured at 36 weeks gestation, and my husband and I drove for two hours from Gallup, New Mexico to the hospital in Albuquerque. I was crying most of the way, worried about my baby. Once we got there, his heart rate was monitored throughout a long labor, augmented with pitocin. There were no significant decelerations. He was delivered vaginally and we knew right away that something was wrong. He didn’t cry and he was floppy. The nurses whisked him away, and I didn’t know what hit me. After six weeks in the NICU, we left the hospital with an apnea monitor, breast pump, and no diagnosis.

After Peter’s birth, I remember having a recurrent dream where I would wake up crying and searching for my baby in the bed sheets. I never found my baby in those dreams during his hospitalization. Eventually, I realized the significance of those dreams--I had lost the baby I had hoped for.

In order to accept my child with disabilities, I knew that I had to let go of that other baby. The road to acceptance has been a difficult one, especially since my husband and I don’t have family close by. In the beginning, we mostly relied on each other for support in a more private way. As Peter grew, and his disabilities became more obvious to others, we started reaching out to organizations like FOCUS that help families like ours. It didn’t seem to matter what the diagnosis was. The experience of other families who walked the same path shaped our acceptance, as well as defined the community we became a part of.

I have met many parents from diverse cultural backgrounds, including European, Native American, African American, and Indian, who share the same ‘cultural’ perspective. We all believe that we need to find a place in our society where our children are respected for their abilities, and that our children’s rights are protected. All of us fight battles with school districts in hopes of finding the ‘least restrictive environment’ to educate our children in. We search the Internet for the best medical advice, and ask each other for recommendations. We share our thoughts about having a second child, or raising teens. After Peter turned four, we took the plunge and decided to have another child. We all realize the impact of our children’s disabilities on family, marriage, friendships and careers. We all share a common ground that shapes the acceptance of our children in their communities.

As a Ukrainian-American growing up in a tight-knit Ukrainian community in Hartford, Connecticut, I wasn’t given a ‘map’ to guide me along the path of parenting a child with a disability. Our Ukrainian Catholic church doesn’t even have an accessible entrance!! My 82 year old mother, raised in the Ukraine, still believes that my son could be ‘cured’ if I’d only make the trip to Lourdes and pray. Many Catholics go to Lourdes, France in search of a miraculous cure for a physical problem, leaving their crutches as evidence of a cure. Unfortunately, I can't find comfort in this belief system.

In both my personal and professional life as a genetic counselor, the families I have met raising children with special needs have guided my own internal acceptance of disability. I have found that one’s positive mental attitude, as well as sense of humor, helps smooth the path to acceptance. My husband has helped me understand the importance of both. Our family has been a part of a FOCUS in Atlanta for over a decade. We participate in ‘share’ groups, moms’ day off, various outings, lectures and sometimes just for some fun and laughter. This group of parents over the years has given our family the inner strength to believe in ourselves as we plod along this uncharted path.

Most parents of children with special needs have probably read the essay ‘Welcome to Holland,’ where the author plans a trip to Italy but ends up in Holland. The author learns that seeing tulips in Holland isn’t so bad after all. In the same way the author mourns her chance to see Italy, I have mourned the loss of the baby I had hoped for. After many years and lots of tears, I finally found Peter.

Peter has many gifts. He has the gift of laughter and makes me laugh many times a day. He is my ‘sensitive’ child--the first to sense sadness in others. He uses a communication device (Dynovox) which he has skillfully mastered. He can order french fries and even ‘super size’ them. He loves cookies, riding buses and trains, ‘talking’ on the phone with his grandmother (he's non-verbal), and joking around with his teen-aged friends. The look on his face when he boards a train or bus is one of sheer excitement. I wouldn’t trade places with any other mom.

Alone
by Katie Rousse

I sit upstairs in my classroom where I teach school in my imagination, alone. In my house, I sit in that room, alone. I sit in a chair, looking at the packs of rain that come down fast and hard, lavishly covering the home at which I am at, alone. I sit in that house, that room and that chair thinking. I’m thinking about the good times, friends, family, and my brother, Chris. “Oh, Chris, I wish you were here!” A tear runs down my cheek, as the rain does outside. Then, a strike of lightening bursts out of nowhere and I think about the times I had with Chris, in this very room that I am sitting in. I think about the times we had laughing, crying, and having fun. Then I think about how without one of my big brothers, I am almost alone. Nothing bad should happen to someone good. Well, I had one of the worst things happen to me. My nine-and-a-half year old brother died.

I was at my friend’s house, spending the night because one of my brothers had pneumonia and was in the hospital. My brother, Chris, was born with an MPS disease called Mucolipidosis II, where you’re missing one enzyme in the body. I remember that our friends took us to go see my brother in the hospital. It took us around 20 minutes just to find the room and we ran like a pack of monkeys, but we found it. I also remember that I had a little cough. It was my turn to go see Chris. My dad walked me to the door where my brother was waiting for me inside. When I was about to step into the room, a nurse stopped me. She looked at me funny and asked,

“Do you have a runny nose?”
“No,” I answered.
“Are you sneezing?”
“No.”
“Are you coughing?”
“A little,” I answered. She looked at me funny then, she looked at my dad. I knew I should have said no. “I’m sorry,” the nurse said, “but your daughter cannot go in. She might get your son even sicker.”
“But it’s her brother!” my dad fought back.
“I know,” the nurse argued, “but do you want to get your son sicker?” My dad got mad.
“My son is already as sick as he can get.”
“Okay,” the nurse said tiredly, “your choice.”

“Thank you,” my dad said calmly. “Go ahead sweetie.” I walked into the room to find bags of medicine everywhere I looked. As I looked to the wall, I found my brother lying on top of my sleepy mother. “Hey, Chris, how are you?” I asked softly. “KK.” I was happy to hear him say my name in the way that he did. I was afraid to touch him because of all the needles sticking out of his skin. I was about to cry. The way he looked at me, is a moment I will never forget. In the room I stayed about ten minutes, then came out to wait for Tim, my other brother, to talk to Chris. I remember waiting, and waiting, and waiting for something to happen but nothing did. Just sitting there, I waited until it was time to go. I wanted to stay with my brother, but I had to get into the car to leave.

When I got to my friend’s house, I went to go change into my pajamas. I remember my friend and I had just taken showers and we were drying our hair, when the doorbell rang. I didn’t hear it though because of the dryers; they were making too much noise. I turned around and the next thing I knew, my mom and dad were right in front of me. I was so rejoiced! I ran to them and gave them a great, big hug and each of them a kiss. After the greeting, I wanted to know only one thing. “Where’s Chris?” My parents looked down at the ground. “Mom, where’s Chris?”

That night, the rain was coming down hard. It covered my house and I could hear the DRIP, DROP, DRIP on my back porch. It was also raining in the house. The tears of my mother splashed down on the hardwood floor, like rain. I could see my dad looking at the ground and my brother looking shocked. A priest was at my house speaking words. I could hear him over the crying, but I could make out words “sorry,” “Chris,” and “dead.” “What?” I asked in shock. The priest answered, “Your brother passed away on March 18, 2001.” My heart stopped beating and I could taste sand in my mouth. Father Cliff kept talking, but I couldn’t hear him. I could only hear the sound of my broken heart beating slower, and slower, and slower. I grabbed a tissue and joined my mom for the chorus.

So here I am, alone in this classroom. Alone, in this chair, in this house I am in. As I wait for the rain to stop, I see the sun, and I think. I loved Chris very much, and nothing would keep me from not having him as a brother. God gave me this task because he knew I could do it. As the rain finally stopped, I stand up and go turn off the light, and I think. Even though I have lost Chris and there will be a hole in my heart where he should be, he is never really gone. Then, I realize that he will always watch over me, which means that I will never be alone.

The Reason for Believing
by Jimmy Crivolio

I led the pledge. Our class got asked when I was in fourth grade. Like I said I am as proud as I can be. I made people believe the can about the word ability. Very few people know to be the best themselves that they can be. Now when my day is over I make the reason for believing.

Jimmy is 11-years-old and in fifth grade at Mimosa Elementary School in Fulton County. Jimmy is nonverbal, but has a lot to say - he wrote this on his computer at school.

Pinball Wizard
by Skip Weiland

“He seems to be completely unreceptive.
The tests I gave him show no sense at all.
His eyes react to light; the dials detect it.
He hears but cannot answer to your call.

His eyes can see
His ears can hear, his lips speak
All the time the needles flick and rock.
No machine can give the kind of stimulation,
Needed to remove his inner block.

I often wonder what he's feeling.
Has he ever heard a word I've said?
Look at him, now in the mirror dreaming
What is happening in his head?”

That conversation between the doctor and Tommy’s father in The Who’s 1969 rock opera might well have been with one of our doctors as we frantically searched for answers to the physical and cognitive delays of our son Bret. In the story of Tommy, a ‘deaf, dumb, and blind’ boy creates a following by mastering a pinball machine, and the world discovers the beauty within of a special person who can only love. In the story of my son Bret, our family and friends have discovered the beauty within ourselves by sharing the love of a child who, like Tommy, seems deaf, dumb and blind, yet amazingly, he finds ways to express himself and bring out the best in all of us.

As many of you, we understand the everyday challenges of raising a child with special needs. Going to dinner, a movie, or on vacation as a family can be difficult, to say the least. Bret’s brother and sister have missed their fair share of events due to a canceled babysitter, or an episode of undiagnosed, hysterical screaming, as we worried a neighbor might call the police for child abuse. I know I’m not the only father here tonight that changes diapers for a 9 year old, or gets kicked in the groin by the right foot while frantically trying to get the left shoe on in time for the school bus.

That said, I can’t imagine life any differently. Like Ashley Smith, who said she believed she was chosen in order to end the violence of an armed gunman, maybe we, all of us here tonight, were somehow chosen to share life with some very special people who help US to see, and hear, and speak. It is us that ASK of our children: “See me, feel me, touch me, heal me.”

When I was asked to speak tonight on how my life has changed since the birth of my special needs child, I was thrilled. What parent does not like to speak and brag about their children? Last weekend my wife, Angie, yelled from our son’s bedroom, “he pulled up to standing by himself, come see this.” The joy and amazement in her voice was unmistakable. We had waited nine years for this. Yes, nine years, not nine months.

Our son Bret turned 9 in March. He is extremely delayed both physically and cognitively, and has no diagnosis. After an unremarkable pregnancy and delivery, we were shocked into the reality that this was not the vacation we had been planning! Indeed, with a list of ailments like hypotonia, strabismus, pervasive developmental delay, severe curvature of the spine, this has not been a vacation at all, rather “a long strange trip.”

Well, our unexpected “detour” put our entire family into a new and unfamiliar world. We were told to start therapies when Bret was five months old: physical therapy, occupational therapy, and speech therapy. We have never stopped. I sometimes wonder if I could find a new career as a backpacking therapist. There’s been a trip to Florida to investigate hyperbolic chambers and several trips to swim with dolphins. Parenting a special needs child is not a job, it’s an adventure!

Has my life changed? Without a doubt! Spending a week in the hospital when our son stops eating and drinking because a cold turns into the flu can be a bit overwhelming. When Bret screams with pain, but can’t tell us what hurts, our stress level becomes a bit elevated. Other times, when I pick Bret up, and he puts his head on my shoulder, and pats me on the back, I’m in heaven. When aunts, and uncles, and cousins, and friends come to our home, and get on the floor to play with Bret, I couldn’t be prouder. When my 17-year -old son and 15-year-old daughter hug and kiss their 9-year-old brother, I swell with pride and joy.

My life has changed in more ways than I can say. Most of the changes have been positive, some have been more difficult. All in all, I feel very fortunate. I’ve met some beautiful people and seen some true miracles these past nine years. Through FOCUS, we have discovered our extended family. We share our children with other special families, and we are privileged to meet typical families that share their time with our community. At FOCUS, it seems there is always someone who has already experienced our current catastrophe.

The FOCUS monthly respite program allows families, like ours, four hours to go to a movie, or dinner, or just time to give some special attention to each other. Today, it allowed me clean up the house and then chauffeur Bret’s sister, Rachel, around while she discussed the meaning of life on her cell phone with a friend she was meeting 10 minutes later at the mall. When I dropped Bret off this morning, HE was overjoyed to have a little respite from the rest of his family. Each summer, at FOCUS Camp Hollywood, our children have the opportunity to experience a week of art, music, science, cooking, and other cool projects at summer camp just like any typical child.

On behalf of my entire extended family, thank you all for being here tonight and for your continued support of FOCUS. I see the world quite a bit differently today than I did nine years ago. Now, I seem to see a little Pinball Wizard in all of us.

Skip shared this as one of the parent speakers at the annual “For the Love of Children” dinner, dance, and silent auction.

With Love from Cody
April 24,1985-February 24,2005

Please don't weep for Me,
My life was meant to be.
God chose my home so carefully,
So please don't weep for me.
My life has been full of trials, that's true,
But my Loving Father has seen me through.
I'm thankful for this time I've had to love each one of you.
I've ridden quarter horses, although inside the malls.
Seen Majestic Mountains, and gorgeous Waterfalls.
Rode Bulls and speedy race cars,
While safely on Dads lap.
We'd laugh so hard that sometimes,
I’d forget where I was at.
I've had the greatest teachers any kid could ever have.
Hatched chickens in my bedroom,
I bet you can't match that!
I've traveled to Alaska, to see the eagles soar,
Skimmed across clear blue bays, saw pods of whales galore.
On this final journey there's so much to explore
I can hardly wait to enter Heavens door.

I've had the greatest sister any boy could ever have,
She has read me many stories, She always prayed with me.
She always was the bestest little sister she could be.
When you see a precious bird or dainty Butterfly,
Remember how I loved them, and please try not to cry.
Think of me running and singing and know that I am glad.
Remember me with laughter, and please do not be sad.

Cody Shane Cooper was born on April 24, 1985 and lived with his parents, Judy and Henry, and sister Veronica in Conyers. Because of a near-drowning accident when he was a toddler, Cody faced many physical challenges in his life. As this poem attests, family and cherished friends surrounded Cody with love and opportunities to experience the world. A “FOCUS child” for more than 16 years, Cody passed away on February 24.

From the Editor....by Lucy Cusick
“The Josh Watch”

I have intentionally not written about Josh’s post-high school career. We were so proud that Josh was going to college at Georgia Perimeter, but I had serious doubts about how successful he would be. I’ve learned, however, not to borrow trouble....not to worry about what-if and what-will-he-do-if. Josh was also nervous about going to Georgia Perimeter.. but quickly settled into the routine and looked forward to his days at school.

College was difficult. The work was more complex and the pace was fast. First semester, he passed college English but struggled and failed Math (no great surprise to us since math has always been very difficult for him). He tried Math again the second semester, but had to drop it at mid-semester to prevent another failing grade on his transcript. He may try again, with my blessing, or he may recognize that his happiness doesn’t depend on more education. The overall college experience, however, was not a failure - he learned many wonderful things (none of them had anything to do with math!) He learned how to navigate the campus alone. He learned how to go to the Tutoring Center and ask for help with homework. He learned how to study in the library and how to get his books out of the knapsack on the back of his wheelchair. He learned how to do poorly on a test and not fall apart in class. He learned how to meet the Marta Lift Van at a certain time, in a certain place. Josh learned many skills - skills that FOCUS parents can appreciate!

But now, without college, Josh faced all the things we had worked so hard to avoid: isolation, boredom and loneliness. We had to find something for Josh to do - volunteer, work or just get out in the community, with the goal of being busy, productive and happy. As bright as Josh is, he had no vocational skills and no training. In my mind, the perfect job for Josh is a small part of a job - something that he understands but is broken down into uncomplicated pieces. He loves airplanes – so sit him in an air traffic control tower, let him talk planes and watch the radar for tornadoes.

It’s a long story that’s sure to give you goosebumps, but I began nosing around Peachtree Dekalb Airport (PDK) one day. I ran into the (unbeknownst to me) director and past president of the Peachtree Dekalb Airport Association while looking for an elevator (I was looking for accessibility). He looked official in his PDK polo shirt, but rather silly in a headband with bunny ears attached. There wasn’t an elevator, but he asked if I needed something carried upstairs. Only my son Josh, I replied, and his 200-pound power wheelchair; I further explained that he was looking for some volunteer work to gain some job skills. And the man with the bunny ears replied with tears in his eyes, “Well, he won’t need an elevator to work with me. I’m on the first floor. I mentor teens and have been looking for a new one. My last teen just died of leukemia....and his name was Josh.”

Within the week, Josh was volunteering for the Peachtree Dekalb Airport Association. He researches and writes articles for the association’s newsletter and does small tasks for Leonard “Air Boss” Harris at Wings & Things Pilot Shop. When pilots come in to purchase charts and maps and pilot stuff, Josh talks airplane talk. He takes his breaks where the helicopters land. He is learning a few job skills and a lot of life skills; he is out in the community, busy and happy.

We all know that angels have big hearts. Well, sometimes they wear bunny ears and hang out at airports.

Where Are the Parents?
by Sue Stuyvesant

Where are the parents? They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents? They are at home, diapering their 15-year-old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents? They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through? They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents? They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with childcare and the state agencies that are designed to help are suffering cut backs of there own.

Where are the parents? They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometimes 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves. Where are the parents? They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.

They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Roosevelt Warm Springs – One of Georgia’s Best-Kept Secrets
By Martin Harmon, RWSIR Public Relations (706-655-5668)

One of only three state-managed rehabilitation centers in the United States offering both medical and vocational rehabilitation, the Roosevelt Warm Springs Institute for Rehabilitation is one of Georgia’s best-kept secrets.

Founded by Franklin Delano Roosevelt in 1927 as a world famous polio treatment center, it is now a modern, 940-acre facility under the direction of the Georgia Department of Labor’s Rehabilitation Services with a staff of over 500 and a Vocational Rehabilitation Unit that helps special needs young people (ages 18-25) become independent, contributing adults.

Although its mission to “empower persons with disabilities to achieve personal independence” has not been altered in almost 80 years, the Institute’s program diversity has changed dramatically. The VRU actually came into being as the Georgia Rehabilitation Center in 1964 and celebrated its 40th anniversary in 2004.

Divided into hubs (based on what section they are from), special need youngsters from all over Georgia are housed in a completely accessible, 160-bed dormitory in Warm Springs and attend on a quarterly basis. Meals are served in the Institute cafeteria with careful attention given to special dietary needs.

Programs for each young person are structured individually, but major areas of concentration include: community living and independent living skills; academic education, including GED training and computer skills; work services and job skills training through Pro-Work, the Worksite Partnership Program and West Georgia Technical College Certificate Training Programs; specialty services such as Georgia’s Business Enterprise Program and Driver Education; and a wide array of student activities, including leadership chances like Student Council and recreational opportunities at RWSIR’s Camp Dream and the Center for Therapeutic Recreation.

All services offered by the VRU are designed to achieve employment, foster independence and build confidence, and a team approach affords each new student with a counselor, vocational coordinator, behavior specialist, training instructor, nurse, recreation therapist, teacher, social service technician, program assistant and other support services staff.

Disabilities found among RWSIR vocational rehabilitation students include learning disabilities, mental retardation, spinal cord injuries, neurological problems, orthopedic problems, psychiatric problems, visual impairment, and other developmental disabilities. Simply stated, the profile of a Roosevelt Warm Springs VRU student would be a developmentally or learning disabled young person (or multiple disabilities) who has at least a third grade reading level; who needs pre-vocational skills training; who would benefit from independent living skills and/or social and interpersonal adjustment training; and who already has vocational or employment interests and goals.

For more information about vocational rehabilitation programs at Roosevelt Warm Springs, call 706-655-5008. Our website is www.rooseveltrehab.org.

GO FOR TWO?
By Vickey Bechard

Ok, so you are given a child who is special. She is special in the ways she hugs, kisses, sings and, yes, even in the ways she argues. By the way, she has special needs. She has been told her life will be a more difficult path. Some goals will be met over a longer time than others and some may never be met. So the question is …..Do you go for two?

Well, first let me give you some background information. Savannah Elaine Bechard was born June 26, 1997. We were proud parents that had no idea she was going to be diagnosed with cerebral palsy, epilepsy, and cortical vision impairment. But as all “special” parents do, we learned the terminology. It was heartbreaking and earth shattering. We prayed then for miracles and still do today. We have seen our special Savannah as our eagle, renewing her strength each day and soaring above her goals continually. God is showing us how perfect and special she is each day. But the question remained, “Do you go for two?”

That was a question we feared to answer. Medicine is not perfect and could we face difficulties in our next little one? Also, how would we be able to take care of Savannah adequately and another child? How would Savannah take having another child with everyday needs or special needs too?

My wonderful husband is a football coach for the youth league. Together, we prayed and planned and questioned. Should we go for two? Absolutely!?! Will it be scary? Absolutely!! Will it be an act of sheer faith and trust in our God? Absolutely!! Was it one of the best decisions we ever made? Without a doubt. Absolutely!!!!

February 16, 2003 Lillian (“Lilli”) Faith Bechard entered into this world looking into my eyes with eyes that shined. She came home with us to special Savannah, who sometimes has a hard time with transitions, and won Savannah’s heart too. Savannah sat with me that very day and looked at me with eyes that said, “What took you so long, Mom?”

Lilli has brought so much growth, brightness, love, hope, encouragement, and faith to us all, especially Savannah. She always asks about her big sister, “Savannah? School?” in the mornings and is happy to see her in the afternoons. She is her cheerleader. Now Lilli will tug on Savannah, love on Savannah, and pull her hair (out of love, of course) and Savannah will (well, most of the time) beam with pride at her little sister and say, “OOH, La-La”

Go for two? Savannah would say so and so would we.

My Best Friend
By Heidi Fernandez

Whoever said “A dog is man’s best friend” must know Lucy and Andrew.

Lucy and Andrew’s friendship started one year ago. Andrew, who has autism, saw a photo of three dogs at Jungle Gym, an education and movement center in Woodstock. He pointed specifically to one dog and asked her name. Her name was Lucy, a therapy dog with Georgia Canines for Independence. Andrew said he wanted to meet Lucy. So we arranged for Lucy to come to Jungle Gym to meet and work with Andrew.

To say that Andrew looks forward to his weekly visits with Lucy is a huge understatement. He plans his week, knowing that every Thursday he will see Lucy. Lucy helps Andrew with his social skills by drawing people to Andrew; this encourages two- way conversations, which is sometimes hard for Andrew. Grooming Lucy helps Andrew with motor planning since he needs both hands to brush her. The feel of the brushes and Lucy’s fur help Andrew with sensory issues. Andrew was also very sensitive to anything touching his face (napkins, Kleenex, etc.). Not anymore - Lucy loves to give Andrew kisses and he loves to get one of Lucy’s big old sloppy ones!

One of the biggest accomplishments happened over the holidays. For the first time, Andrew wanted to go to the store to buy a “Very Special Present” for Lucy. He picked out a very special ball and said, “I hope she loves it.” A picture really is worth a thousands words – I cannot describe his face when he gave Lucy the ball.

Words can never truly describe what Lucy has done and continues to do for Andrew. She gives Andrew unconditional love and acceptance and makes Andrew feel very relaxed in a world that can sometimes feel very out of control.

Never underestimate the power that one person or dog can be to one child.

From the Editor….by Lucy Cusick

How many times have you stood in a doctor’s office, wishing you could remember exactly which medications your child took that could have caused them to break out in a full body rash?? Or how many days your child stared into space for over five seconds, even when you snapped your fingers six inches from his nose?

As parents of children with special needs, we are always searching, evaluating, experimenting, and investigating different treatments, medications, and therapies. But we’re also busy with the rest of our lives - work, school, other children, spouses, and medical appointments - that we can’t keep straight the little details that might help the professionals treat our children.

Some families have found a journal is helpful - no, not one about how you feel (although that is supposedly very therapeutic) – one about your child and the treatment, medication, reactions, etc that they have. This is especially helpful for children who need medication for seizures, behaviors, or other needs.

When Josh was young, I had no problems remembering everything about his treatment. But after we had another child (I had a few more years on me) and I had more to remember, I needed help! I found a spiral notebook that once held some committee notes and started jotting details about his progress in school. I continued the notes when he was sick and on lots of medication. And kept on after he had a shunt malfunction. This info was very helpful in IEP meetings and then later in visits to his doctor.

Any bound notebook works for such a journal – but designate one notebook, not small pieces of paper that get lost. Keep it handy – maybe in the car, where you can update it during a therapy appointment. Unless you love to write, you don’t need to include long narratives, just enough info to track changes: date, medication or therapy, behavior or symptom you’re watching, and observations. This is extremely useful to look back to, – and so much more accurate than, “Well, a year ago we tried something, can’t remember the name or dosage, and before that we tried something else.”

No one knows your child better than you. But you have to share what you know to get the help your child might need.

“When You Are the Caregiver”
by Karen Greenfield

Being a caregiver can be one of the most difficult things you'll ever do in your life - and one of the most rewarding things you'll ever do, one of the most maturing, one of the most memorable. A caregiver is, by definition, anyone who helps another person in any way, whether that care is physical, emotional, social, or spiritual. A caregiver may be a family member or a friend who cares for someone they love either on a short-term or a long-term basis.

Being a caregiver can be a demanding task. Our society idealizes self-sufficiency, yet the very nature of your circumstances may require you to turn to others for help. Your caregiving responsibilities may consume you, absorbing your time and your psychological energy and your physical stamina. You may find yourself overstretched, trying to handle commitments to your job, or to other family members, or to yourself, or, as is often the case, to all the above. You may feel ill-prepared to assume your role, or ill-equipped, or ill-suited.

You may sometimes feel thankful that you can be this full time caregiver. It can be very fulfilling to be of service to someone else, and to know that you make a difference in another's life. Being a caregiver can be a deeply meaningful way to spend your days on earth. I also believe this: it's not easy to be a caregiver. There are days when you don't feel at the top of your game. But still you're a caregiver and you try to summon your energies and do the best you can. There are days when what is happening inside you intrudes. It may be something as minor as a worry you can't let go of, or something as major as a great loneliness you're facing. And still you are a caregiver and you want, and you need, to rise above what is going on inside you.

There are times when the hours you work are too long, or when the demands you face are too many, or when the rewards you receive seem too few. And still, you are a caregiver, and you know that someone is counting on you and you do what you've learned to do and what you believe is right to do. There are days when the person in your care is not easy to care for—perhaps they're angry and they take it out on you, or they're depressed and refuse to respond to your efforts. There are days when you've gone that extra mile, and yet you have the feeling that what you've done hasn't even been recognized, let alone appreciated. Still you are a caregiver and you don't want to let that experience harden you or limit how you respond in the future.

There are days when you wish that, for a change, someone would care for you—someone would be concerned about your needs, your feelings, your hurts. That, for just a little while, someone would care for you in the same way you have cared for others. And still you are a caregiver and you continue on, knowing that you have a responsibility to look for your own ways to be sustained.

The healthiest way to care for another is to care for yourself. It's natural to want to give priority to the needs of the child that you care for. When care giving becomes an essential part of the way you live your life, then caring for yourself is just as important as caring for your child.

To give, you must have something within you to give. To share your strength, you must have ways to summons that strength. To offer something fresh, you must find ways to be refreshed yourself. Caring for yourself is not a matter of selfishness or unselfishness. It's keeping yourself replenished and healthy so that you can give the most beneficial and the most wholesome care you can. It's a matter of taking into account the fullness of who you are—acknowledging that you are both body and mind, that you have both heart and soul, that you need both privacy and relationships.

Be aware of the needs that you have, just as you're aware of the needs of the one you're caring for. And then satisfy your needs. Rest, and exercise. Sleep well, and eat wisely. Give yourself time off, and time away. Be among people who support you, and affirm you, and lift you. Open yourself to the healing touch of nature. Pamper yourself from time to time, and love yourself all of the time.

Remember: by caring for yourself you're caring for someone other than yourself.

Karen, the Respite & Camp Coordinator at FOCUS, is the mother of Katie (19) & Kyle, who died in 2001. She has a unique perspective on caregiving, having cared for Kyle for almost 13 years. Now as the coordinator for the FOCUS Extra Special Saturday Respite program, Kyle’s memory lives on as other parents enjoy a few hours to care for themselves.

From the Editor....Lucy Cusick

I ususally don’t fall for things that look easy. I mean, I can turn down a “two-nights, three days.....FREE” without thinking twice. I’ve learned that most things in life aren’t free - and, certainly, not much is easy.

But when I see Oprah giving away cars and cashmere sweaters and Ty on Extreme Home Makeovers, I start dreaming. It all looks so easy.....imagine it just being done for you. Walk outside and get in your new car. Go to a resort and come home to a new house.

Home modifications have become part of my “solutions for everyday challenges” platform. We added a bedroom and bathroom onto our 40-year-old ranch home two years ago. We were lucky to begin with - we were at least already on one level. The addition (for Josh) was to allow him more independence, with room enough for all the equipment he needs. We decided it was worth the cost - we borrowed and re-financed and went back to clipping coupons. And it was worth it. He can now shower and dress independently because there is room for all the equipment that he needs - and no one uses his space since it’s set up just for him. Talk about life-changing. For 16 years, we helped toilet, shower, and dress him. And now, with the space, equipment, and a few modifications, we can watch Oprah and Extreme Home Makeovers instead of helping him with activities we all took for granted before having him.

So maybe I can convince Oprah to have a show on accessible homes; fill the audience with parents of children with special needs, and give everyone a new or re-modeled bathroom. Or Ty to do Modified Makeovers and just add features for accessibility to many homes - ramps, grab bars, wider doors, and roll-in showers. Leave off the decorating - we need function. For us, those changes changed our lives - ours and Josh’s.

If you have made modifications to your home for your child with special needs, please contact FOCUS. We receive many calls from families seeking ideas and suggestions on modifications. We would like to have (1) a list of families willing to give informal ‘tours’ of their home to other families and (2) photos of modified areas in your home that work for your child. These photos will be shared with Assisting the Needs of the Disabled (AND) for a book they are compiling with modification ideas.

Watch for the next Tool Time, sponsored by AND and offered to FOCUS families quarterly. In November, we built threshold ramps - after all, the first modification is to get in the door!!