FOCUS - support for children with disabilities or medical needs

God’s Littlest Christmas Miracle
by Joyce Gomez

Christmas 1999 was just a few weeks away. Everyone was getting ready for Y2K. I was pregnant with my second child who I recently found out was going to be a boy. We were so excited. Our older son, Brandon, would be a big brother! The baby was due March 19, 2000. Little did we know that our whole world would soon fall apart.

Christmas night, I went to the hospital with a severe headache. I was diagnosed with pregnancy-induced hypertension, which I had with my first pregnancy, and was put on complete bed rest for three months. I went home; the next day a nurse came to take my vitals. My blood pressure was extremely elevated so I was admitted back into the hospital. My labs had plummeted, and the doctor told me that my body was going to shut down. Because my condition was pre-eclampsia, the doctor planned to deliver the baby in a few days, three months prematurely. The doctors ordered a biophysical profile to monitor the baby before surgery. He was not moving at all so I was rushed into emergency surgery. Little did we know that he was dying inside of me.

When he was born, he was blue, not breathing, and had a faint pulse. He weighed 1 lb 15oz. at birth; his Apgar scores were 1 and 1. Everyone thought he was essentially dead in the operating room. Everyone was tense and did not speak. I asked the anesthesiologist if he was dead. I asked him over and over because he didn’t answer me. He finally told me that the baby was very small so he would not cry. The baby was immediately intubated and rushed to the NICU that would become his home for the next three months. We named him Jacob.

In the NICU we were introduced to things that we never thought we would ever know. Jacob was on a ventilator for a month and on oxygen for a year. He was also on a pulse-oximeter, apnea monitor, had daily weight checks, and had labs run on him daily. He had jaundice and a nasogastric (NG) tube for feedings. We received daily updates on Jacob from the neonatologist. The day he told me that Jacob had a grade one brain bleed and bleeding in his lungs, I felt like the breath had been taken out of me. All of these thoughts went through my head; would he ever talk, walk, or have a normal life? I wanted him to have the best life possible. He was my child, and he deserved it. We prayed daily for God to watch over Jacob and to strengthen him. I kept an angel in his isolette for assurance.

Jacob came home March 18, 2000, which was close to his due date. No one told us that the hard part was just beginning! We learned how to take measurements of oxygen saturation levels, insert the NG tube and check its placement when he pulled it out, and to administer a myriad of medicines. We lived with the constant beeping of the pulse-oximeter machine due to the sensor lead constantly coming off of his foot. Our lives solely consisted of medicines, NG tube feedings, therapies, and many doctor appointments. We didn’t know what sleep was. I remember crying and being sick most of the time. Our world was turned upside down.

As the years have gone by, we have observed vast improvements in Jacob. We were concerned that he would be severely developmentally delayed, but he has developed well. He suddenly started eating by mouth at 3 years of age and gained some weight. Now, he wants to try food when he sees it! Our biggest issue is that he doesn’t yet talk; he is very smart though and is extremely curious and likes to be involved in everything, especially anything his big brother Brandon is involved in! Jacob looks up to Brandon as his role model. He is also very outgoing and loves to socialize with other children. Jacob had an MRI of his brain which showed that his cerebellum never completely developed. His neurologist was very surprised since he could sit up, walk, run, or jump with this condition. Physicians and therapists marvel at how well he has done, considering his history.

Almost four years have passed since December 1999. The pain has eased but has never completely gone away. I often wonder why we had to endure what we did; the experience makes us realize how important life is and how our children are a true inspiration. I think back to Christmas four years ago, and the church sign that we passed every day on the way to the hospital. The sign asked “Have you thanked God for his Christmas gift to you?” And I thought to myself “Yes, thank you for my son Jacob, your precious gift.”

A Smile in Our Hearts
by Noel Rogers

We will never forget how we felt when Cristian was born. After being in labor for 17 hours, I gave birth to a perfect little boy. As he looked up at me, I thought he had the most beautiful little face I had ever seen; he melted my heart. Minutes later, the doctor informed us that Cristian had Down Syndrome. In an instant, our happiness vanished as we fell into shock, sadness, and confusion. All of our dreams and hopes for our son were gone.

Five years later, things are different. Through the support of family, friends and organizations like FOCUS, we have realized that our dreams for Cristian did not disappear, but merely changed. He is everything we ever wanted: a sweet, smart, and happy boy who enjoys music, books, dancing, school, and playing outside. Cristian is our reason to celebrate life and family.
We are proud of all his accomplishments. Cristian was recently selected to be in the 2003 National Down Syndrome Society presentation video in Times Square on October 19 for the National Buddy Walk in New York City. Thanks to Cristian, it is an honor for us to be part of the National Down Syndrome Awareness month (in October).

As we all know, it is not an easy journey raising a child with special needs. We are forced to make many difficult decisions (hoping that most are right), participate in seemingly endless therapy sessions, and fight for our kids to get what they need/deserve. Occasionally, the challenge of trying to be a Super Parent overwhelms me and brings me down. Just about that time, Cristian looks at me with his little angel face and gives me a hug, putting a smile back in my heart and letting me know that all my effort is worthwhile.

NOVEMBER SHARE GROUP TOPIC: SURVIVING THE HOLIDAYS
by Elizabeth Hewell

The holidays are almost upon us, and I am not ready!! No gifts are purchased and no one is invited for Christmas dinner yet; I haven’t even decided which side of the family to invite!! Either side means around 15 people, ranging in age from 3 to 40; this means I have to have the house cleaned, food cooked, and everyone dressed....all at one time. And I gave up the vision of the “Walton Christmas” long ago!

How do you prepare? My helpful hints are as follows:

1. Just Say No! If a big family gathering is simply impossible for your family, just say ‘no,’ as politely and respectfully as possible.

1. Budget your time. Plan a schedule and stick to it. Keep in mind that children often function better on a routine; honor their bedtime to keep everyone happy!

1. Plan ahead. Start buying gifts yesterday. Have suggestions for appropriate toys for your child ready.

1. If your family is willing and capable, ask for help caring for your child while everyone is together. Give them a specific duty - at my daughter’s last birthday party, I asked people to sign-up for reading time with her. She had her card full for 3 hours! If your family is not willing or capable, find an alternate plan (tag team with a spouse or bring a friend) so that you do not get angry when you ask for help and they refuse or do not give good care.

1. Remember the basics: eat right, get at least as much sleep as you usually do, and find a little time to relax.

1. Give yourself permission to be wish that you could make everything right for your special needs child. Aren’t making wishes what the holidays are all about? So, when you get that feeling, go over, hug your child, and do something that will make them smile. Sometimes, that’s what reminds me that all she needs is love and attention from her family.

By now, you’ve probably noticed that all of my helpful hints have the number 1 in front of them! I simply could not decide which was the most important - sometimes, the order changes, but the hints still remain the same.

Remember that whatever you celebrate, this season is centered around the miracles and blessings of the past. Slow down, take a deep breath, and enjoy your special moments of the present.

The topic for November Share Groups is Holiday Survival and Tips for Toys! Please see the calendar for dates and locations in your area.

From the Editor
By Lucy Cusick

Anyone who has read my articles for the past year knows that our son Josh is a senior in high school. Anyone who talks to me frequently knows that I regularly hyperventilate into a paper bag, especially when talking about Josh being a senior in high school. I feel like I’m back at Square 1, back to life without a map, back to walking in the dark.

The articles in this newsletter reminded me, however, of where I’ve been. I’ve been proud, overprotective, stubborn, and determined. I’ve watched Josh mature and grow into a (mostly) handsome and polite young man. I have attempted to measure my success as a mother to his success, and I have learned that the two are not always related!

Recently, I looked through the photo albums for baby pictures for his senior yearbook. I had them all memorized. I knew which pictures were the cutest, the sweetest, and the funniest – and I knew the order of the photographs. As I decided which ones to submit for the yearbook, I started looking at the other people in the pictures. Josh’s grandparents, aunts and uncles, sister, and, of course, Wayne and me. Of course, everyone is younger – Josh is almost 18 years old! But Wayne and I looked really young. Really young. And we looked full of hope; I can almost recall the thoughts I had while some of the pictures were being made. Big dreams, then smaller wishes, then hopeful prayers. Did my dreams come true?

As we enter the season of thanksgiving and joy, I hope you can be thankful - even when dreams are changed – and joyous – even when clinging to hope.

A Family’s Success
By Martha Villwock, M.A., C.C.C./SLP

In my 28 years of practice as a speech therapist, I have treated many children with cerebral palsy, but Jennifer* was a special case. Like many other children with special needs due to cerebral palsy, Down’s Syndrome, and various chromosomatic disorders, she presented low neuro-muscular tone and low tactile awareness in her tongue, lips and face. Among the consequences of this were drooling, an inability to maintain closed lips at rest, and an inability to chew with lips closed.

But what set Jennifer apart was that she was 14 years old and had received speech therapy most of her life with limited success. Would the structured, intensive, hierarchical therapeutic approach I have learned through training and experience in treating special needs children be able to help Jennifer accomplish what other approaches had not? We were about to find out.
In cases like Jennifer’s, it is particularly important to develop muscular strength in the involved structures of the face and mouth. Without adequate strength, the jaw, lips and tongue cannot maintain correct positioning relative to one another and cannot function properly. Like other muscles, these respond to exercises designed to strengthen them.

Another crucial goal is to develop tactile awareness. Children with low awareness are not conscious of food, saliva, or other matter in the region of their mouth. Being unaware of the presence of this matter, they cannot attempt to manage or clear it.

I have found that common speech therapy tools such as straws, horns, and buttons work well in addressing these goals, but, in special needs children especially, they must be used much more intensely and in a far more graduated hierarchy of progressive difficulty than what is normally employed in speech therapy. Parents usually notice this during office visits and remark on the increased amount of time spent stimulating the structures of the mouth and jaw compared to what they are used to.

While in-office therapy is certainly effective, a great deal of neuro-muscular learning and development is required in these children. Best results consequently occur when the office therapy is complemented by regular exercises at home. One of the biggest challenges for both the speech therapist and the family or caregivers is therefore how to manage the time demands of home exercises.

Time pressures are a fact of modern life for everyone, so parents may feel all the more intimidated by the prospect of adding yet another demand to the many they already have in caring for their special needs children. This can be managed by learning how to incorporate stimulation and development exercises into the things they already do with their children, for example washing their faces, brushing their teeth, or even passing time in a traffic jam or at a stop light. A few well-chosen exercises built into daily activities like these add a real boost to the effectiveness of the speech therapy with very little time required. In my practice, the vast majority of parents notice changes in their children’s abilities within a week of beginning regular practice of these activities, so the payoff for successful time management is high for everyone.
Once at-home speech therapy exercises begin, many parents struggle with feelings of guilt when they are unable to meet their own expectations of consistency and thoroughness in working with their children. Misplaced therapy tools, days when nothing seems to happen as it should, having to meet non-routine needs for other family members, and a host of other reasons all can interfere despite the best and most determined intentions. Often the at-home exercises can be adjusted or changed to fit more comfortably into the realistic demands of the home environment, and I welcome parents discussing such challenges and I always reassure them that their feelings of guilt, though normal, are undeserved.

There were many such challenges along the way in Jennifer’s therapy, and one by one we found solutions for them. Responding well to a program of intense, regular, and sustained stimulation that developed her muscles and her tactile awareness, Jennifer made steady progress. Despite a long history of failure that made her case more difficult that what I typically see with special needs children, over a period of nine months she accomplished impressive changes. Today she is able to keep her lips closed at rest and while chewing, and she is aware of and can clear food or saliva in the region of her mouth.

Every child will have his or her own very specific needs for which a plan of therapy must be developed. Some children, for example, will present with high muscle tone rather than low tone, as in Jennifer’s case. For these children the goal is to relax the muscle groups rather than to strengthen them. Fortunately, there are therapies to address virtually any specific need.
That is so very important for parents of special needs children to know. My greatest satisfaction as a speech therapist to these families is to encourage them never to give in to discouragement or fatigue, to never give up hope – and then to help them reap the reward of that hope, just like Jennifer did.

* Not the patient’s real name.

Martha Villwock, M.A., C.C.C./SLP, is president of Dunwoody Speech, Inc., in Atlanta. Though full, her practice is not closed to new patients. For more information, call 770-901-9949, or visit www.dunwoodyspeech.com

Take a Deep Breath
By Elizabeth Hewell

As the school bus left this morning for the first day of school I turned my back, and guilt and fear overcame me. Katharine was taking the bust to school for the first day. Is she looking at me wondering why her mommy is walking away? Last year, I took Katharine to school every day, and she rode the bus home. But now, I’m working part time, and this saves me a 45 minute drive every day.

I walked slowly back down the driveway and into the house, trying to decide if I should turn around and wave (I didn’t). As I closed the door, tears streamed down my face and millions of questions ran through my mind. Will she make it to school without crying? Did we place her in the right class? Will the school know which classroom she needed to go to since she is non-verbal? My mind imagined a person pushing my child all over her school and knocking on each door asking, “Is this your student?” (Of course, I had plastered her name and teacher’s name all over her backpack and wheelchair. Will the children in her class like her? Did I push too hard at the last IEP meeting? I took a deep breath and let it all go. In my five years with our daughter Katharine, I have learned that I cannot control, nor do I desire to control, everything in our lives. I said a quick prayer “God, she is your child. Take care of her today.”

I continued to get ready for the day. I took my other child, Stephen, to school, then went to Katharine’s school to train the teachers on how to give Katharine her food via the G-tube, pick her up out of the wheelchair, change her, and to reinforce that she cannot (under any circumstances) read any books. (Anyone who knows Katharine knows this; if she ever reads one book, that’s all she wants to do all day!!) I also went to reassure myself that she was where she should be. I looked through the window of the door, and she saw me instantly. I could read her lips saying “Hello Mommy.” My heart jumped for joy. She was happy in her circle of new friends. I sat in the back and watched as the teacher interacted with her and how the other children were approaching her. In a matter of moments, I realized that she was in the right class, that she didn’t cry on the way to school, that they did know which room to take her to, and that her peers were more than willing to accept her.

I returned to school the next day to help with positioning her in a new chair. I again showed the teachers how to place her in the big blue foam chair, and how it rolled all around the room. I escorted Katharine and her classmates to the lunchroom and showed the teacher how to feed Katharine peanut butter. As we sat in this noisy room, I heard one of her classmates, Sean, lean over and say to her “Would you come to my birthday party? I am having a Barney birthday party.” Never in my wildest dreams had I imagined that Katharine would be invited to a birthday party. My hopes for Katharine soared even higher as I realized the endless opportunities she would now have!

I took Katharine to the Media Play Room after lunch since it was raining outside. As I was wheeling her around and making her laugh, her teacher approached me. “You know, you can leave. We will take good care of her, and she will be okay.” They kicked me out!!! As I left, I realized Katharine’s teacher was right. I took another deep breath, and let it all go.

What have I learned the past two days? That each deep breath that I take allows Katharine to live a more abundant life. So, my advice is simple – just let go and breathe.

Elizabeth is working part time at FOCUS as the Parent Support Coordinator. She will coordinate all the support groups and the annual education conference. If you are interested in helping with our support groups, please call her at FOCUS. We especially need parent coordinators for Marietta/Kennesaw and Cumming.

From the Editor. . . by Lucy Cusick

OK, I never thought it would happen. I’ve seen it coming, but denied the reality. I certainly don’t look old enough to be the mother of a senior in high school. At the risk of sounding overly sentimental, where did the years go??

Josh just began his senior year in high school. A SENIOR! He’s had his photo taken in a tuxedo, his classes are mostly electives, and he says he’s ‘cruisin’ now. And, of course, these big events don’t escape my ever-evaluating mind and I find myself reminiscing about his early years.

I sometimes wish I had kept a journal during Josh’s early years. The nurses in ICU suggested it once; I remember thinking, “Why would I EVER want to remember ANYTHING about this?” But now, as I talk with parents of babies, I wish I had kept that journal so I could remember the ranges of emotions: unbelievable love and joy and absolute terror and fear. So many emotions, all wrapped up together. Even more, I wish I could remember how I got beyond the feeling of “I can’t do this.”

How did I ‘accept’ Josh’s diagnosis - and therefore our diagnosis as a special needs family? How does anyone recover from unspeakable tragedies - such as September 11 or the accidental death of a child or the murder of a best friend? Where do people get strength and peace and fortitude? Some people seem to accept their ‘fate’ with such optimism and courage; others seem to go less willingly into the life that fate seems to choose for them.

How did you move forward as a parent of a child with special needs? Did you delve in and research everything about your child’s diagnosis? Did you look beyond the medical community, searching for alternative treatments? Did you question your ability to do this? Or are you a Nike parent and you ‘just do it?’

We did a little of all of the above; we still rotate through grief and sorrow, even after 17 years. As a baby, we loved and cared for him. As he grew older, we became task-masters, requiring him to do all he could do. And as an adult, well, we’re still figuring that out. Some days we dream, some days we hope, some days we wear our Nikes and ‘just do it.’

Why Does It Take So Long?

Have you been wondering why it takes so long to get equipment from your supplier?

The process of ordering durable medical equipment (DME) is lengthy. DME is the term used for equipment such as manual or powered wheelchairs, standers, gait trainers, walkers, etc. First, you must have a prescription (or even a letter) of medical necessity from your child’s physician for a piece of DME, such as a wheelchair. The supplier (the company or vender that actually orders the piece of equipment) must first file the claim with any insurance that your child might have, even if the insurance company does not cover any DME. The supplier must receive a written rejection or a statement of how much the insurance company will pay. The remainder of the cost is then sent to the company who manages Medicaid benefits. Additionally there are time restrictions between the time a piece of equipment is ordered to the time it must be paid for. Any glitch can cause the supplier to start all over in the process. This can be so frustrating to parents, who are waiting for a piece of equipment that will maximize their child’s ability and make everyone’s life easier, and to the supplier, who wants to help children and yet must be paid for the equipment and their services.

Changes were made this spring that has slowed the process even more. The Department of Community Health awarded a contract to Affiliated Computer Services, Inc. (ACS) to create a single health care information system accessible to the state health plans. ACS formally took over Medicaid benefit plan administration on April 1, 2003. The bad news is that there are many glitches in this new system. As a result, providers are experiencing lengthy delays in prior approvals and claim payment. As of this writing, some improvement is evident, but there is a long way to go. Anyone covered by Medicaid should expect to wait longer for services.

If this isn’t enough, on July 1, 2003, providers were hit with a 10% across the board reduction on DME allowables. This reduction is going to restrict the provision of certain types of equipment. This will have a long-range effect on what services can be offered. Suppliers are willing to fight the battle to change the cuts and restore realistic allowables, but we need parents to also educate the legislators about the importance of rehab technology in their children’s lives.

Many ideas are being discussed by lawmakers, such as managed care and drug co-payments. Now is the time to contact your state representative and let them know the impact that these decisions will have by telling them about your family and how equipment is necessary to your child.

Weesie Walker, ATS, CRTS is the Branch Manager of National Seating & Mobility. She can be reached by e-mail at wgriffin@nsm-seating.com.

What Have I Done All Day??
By Sabrina Morgan

I have a child who has severe intellectual delays and severe physical handicaps, who is totally dependent, medically fragile, and has many seizures a day. Regardless of whether it’s politically correct, I prefer to call him “weird.” That’s my Collin - 6-years-old, almost as big as me. So I’m busy.

But what do I do all day? I don’t sit around watching TV and eating bon bons. Still, I have
dirty clothes sorted in the floor to be washed...maybe. A table covered with piles: To Do,
Need To Do and URGENT. Kitchen looks like a tornado went through---no survivors. I close my eyes when I go into the bathroom.

Ever feel like you work all day but have nothing to show for it? See if this sounds familiar:

Get up before everybody else.
Get dressed to shoes.
Fix Collin’s medicines.
Feed Collin and give medicines via G-tube.
Wash G-tube and mortar & pestle.
Change Collin’s diaper.
Dress Collin.
Put Collin in wheelchair.
Fight Collin to put on shoes and strap feet onto wheelchair.
Brush Collin’s teeth. Wash his face. Comb his hair.
Roll Collin to the back door to wait for bus.
Put ice pack in cooler with food and Diastat.
Write teacher a note. Sign junk in backpack to go back to school.
Make biscuits for the rest of us to have for breakfast. Put in oven to bake.
Unload dishwasher and since the elves didn’t make it to my house to clean the dirty kitchen left last night, reload the dishwasher.
Reboot laundry. (Dry clothes from dryer. Wet clothes from washer to dryer.)
Iron shirt for husband's meeting this morning.
Push Collin to the bus in the deluge. (Laugh at the mental picture. I’m sure the neighbors did. Me pushing the wheelchair juggling a golf umbrella, a nebulizer and a bag full of Pediasure and bouncing down the driveway dodging puddles.)
Take my medicine---the “don’t go back to bed and pull the covers over my head medicine.”
Fold and put away laundry from dryer plus the pile that’s been growing on the couch for two days.
Match socks. Pitch sock without a mate. (I just know the dryer ate it.)
Sweep dust bunnies before they organize and attack.
Turn on computer. Check email. Begin writing this article.
Power goes out. Lose my article, since I didn’t even the document name.
Call Georgia Power to let the recording know I’m experiencing a total loss of power. Note that it’s only 9:30 am
Start writing again, with old fashioned pad and pen.
Power comes back on.
Restart dishwasher, washer and dryer. Do not restart computer.
Take biscuits from oven. They look like UFOs...Unidentified Flat Objects.
Make toast for breakfast.
Shove papers to middle of table. Eat breakfast with husband and daughter.
Clean kitchen... again.
Unload dishwasher... again.
Load dishwasher ...again.
Reboot laundry...again.
Make some doctor appointments. (And I’ll have to actually keep them at some point.)
Call insurance company about prior authorization junk.
Schedule minor outpatient surgery for July.
Now it’s time to think about lunch and start over again.

Sound familiar? Having Collin is work. Adding all of the “normal” stuff it takes to run a household, makes more work. Then adding three extra loads of laundry because Collin pooped all over himself and the bed, makes it really hard work.

So I’ve decided to take a break over the summer. I won’t care about the dirty clothes as long as we have clean underwear. I’ll put all the stuff on the table into one big pile and take a day to wipe it out. Then, we’ll be able to actually eat meals on the clean surface. I won’t worry about the dishes---that’s what paper plates and cups were made for anyway. I’ll assign the bathroom to my daughter to keep clean. After all, she really does need some character building experiences, right?

Oh, yeah. I’m on my way to Blockbusters to get a movie and pick up some bon bons.

What Really Helps the Medicine Go Down?
By Diane Tebbel

The first two years of my son Eric’s life were not so typical – even before we discovered he had autism. He had asthma, allergies, ear infections, eczema and eye infections severe enough to require four surgeries and hospitalizations and half a dozen trips to the ER. Being a first time mother, but an experienced RN, I took some comfort in my perseverance in following the doctor’s orders and giving medications correctly. I also was told that Eric would probably ‘grow out of’ a lot of the ear infections and allergies. Eventually, we discovered that Eric was severely allergic to peanuts, milk, eggs, animals, mold, and dust mites and that these allergies caused most of his illnesses.

With the help of an allergist, two-year-old Eric became much healthier. We took him out of day care (the cat dander off other kids’ clothes was enough to make him break out); cleaned the air ducts in our house; pulled up carpets; gave him medications and nebulizer treatments; and put him on a very strict diet for his allergies. Due to Eric’s chronic sinusitis, he was on a long course of oral decongestant and antibiotics. Getting the medications into him then was relatively easy. I was bigger and stronger then he. I learned a great headlock technique from a group of waiting room moms. Sometimes, I could ‘hide’ the meds in a sippy cup filled with juice (banana apple juice was the best) or some rice milk, with extra vanilla to cover the taste. I also tried applesauce, pudding, and starburst candy without much luck.

Eric had begun to regress developmentally and eventually was diagnosed with autism. He became even more restrictive with his diet. Food had to be crunchy, not chewy or slimy. It had to be bland and familiar. He was fearful of new foods because he did not know what they tasted like and was very orally sensitive. He reacted in pain to any food or drink with a strong taste or flavor. He then abruptly stopped drinking juice and soy/ rice milk. I also had to be very selective because of his allergies. Does the food contain any dairy, peanuts or egg? The allergist told me Eric should not even get a molecule of those foods. So in addition to examining the label, I would also call the manufacturer. Once I found a safe food product that Eric would eat, I had to continually make sure the ingredients had not changed. Just when I found a brand of frozen fish sticks that Eric would eat, the ingredients changed to contain milk.

Eric did not need many medications when he was four which was fortunate since I couldn’t even get vitamins in him. When Eric was five, his allergist prescribed an antibiotic for him and asked if Eric preferred a liquid or a chewable tablet. I told him I wanted neither! Eric was too strong for me to force-medicate anymore. What I wanted was either a team of people to hold him down so I could give it to him orally or give him a shot. Surprisingly, shots were less traumatic for him. This doctor admitted he had no experience with children with autism but told me to find a way to give it to him orally. I went home determined to win the battle on medications, if for no other reason than if in an emergency, the school staff could give him benedryl during an allergic reaction. I had to find a way get medicine in him

I began by collecting several Godzilla toys, which Eric wanted with a passion. I tied the toys to the ceiling. I made sure that Eric knew if he took the medication, he would get his toy. I used lots of visuals to make sure Eric knew the ‘if P then Q’ scenario (gestures, PECS, social story, etc). For over 6 hours that night, I sat in front of him, one-on-one, going over and over the ‘if P then Q’ scenario: “if you eat this you get the toy.” Finally he did put the tablet on his tongue. He tried really hard but just could not tolerate it and flicked it off. He simply could not tolerate the taste and texture. He even stopped asking for the toys, as he then saw them as unattainable.

Eric’s developmentalist suggested we try a new allergist who had more experience with children with challenges. This doctor was wonderful; she did not fuss at me when she heard about Eric’s aversion to swallowing medications. She noted there is a solution to every problem and found one for Eric. She put him on an antibiotic nasal spray, which worked beautifully. Eric could not throw it up, he did not taste it, and he soon could administer it to himself.

But our problems weren’t over yet!! Soon Eric’s doctors wanted to start him on a SSRI and an antihistamine. He started on Paxil because it was small, tasteless and white. We were back to food hiding! At first, I would put the medicine in French fries. My husband Jim would drop me at McDonald's to get the food while he and the kids waited in the car. I could then slice open French fries and sprinkle a crushed Paxil tablet without Eric seeing me. Then I would obsessively make sure Eric ate them all and not share any with his sister. I can just imagine what the people at McDonald's thought as they watched me lace these French fries with this white powder!!

The hardest part was that Eric only ate six things—fried fish, cinnamon raisin bagels, honey wheat berry bread, graham crackers, bananas, fruit loops and vanilla frosting. I tried putting the medication in some of his other foods. Once I tried to put it in a raisin, but Eric found it and then stopped eating bagels for a while. I then put the medication in vanilla frosting and spread the frosting on a cracker. This worked for a couple of years.

During this time all of Eric's medicine had to be white so that I could crush and blend it into his vanilla frosting. One day I panicked to find the pharmacy had given me blue Catapress tablets instead of his usual white ones. I can only imagine what the pharmacist thought when I begged him to find the white tablets! Later I realized that if I dimmed the lights and put the now light blue frosting and cracker on a blue plate, Eric didn’t notice his frosting had a blue tinge to it. The problem was again solved!

When Eric was seven, he had an allergic reaction to an allergy shot at the doctor’s office. A new physician assistant asked me if Eric would take liquid or tablets better; that he needed benedryl right away. Of course, the answer was neither! The nurse, physician assistant and I tried to hold Eric down to give him Benedryl - to no avail. He was stronger than all of us together! Eric’s reaction reminded me of a scene from the Miracle Worker. The physician assistant finally gave him a shot of benedryl along with epinephrine, which was far less traumatic for Eric than pills. At least I felt that my efforts to make Eric take medication were validated now. The PA and the nurse got to see what I dealt with all the time at home!

Later that year, something wonderful happened! Eric developed a high fever. I did not have any Tylenol suppositories, so I bribed him with ANY toy he wanted if he would swallow a Tylenol tablet that I put in an empty capsule. He felt so sick at the time and
wanted a new monster action figure so bad, he tried it. The gelatin capsule was smooth and tasteless. Within a week, I was getting him to take all his medications in capsules. The gelatin capsules worked great! Eric would take anything as long as I could put it in a capsule. WOW!!! I could even get vitamins into him. No more sneaking medications in his food. Most importantly, anyone could give him benedryl. He was safer at school and at summer camp. Now I can focus on that WHAT I’m giving him instead of the HOW. That year, our lives became a little easier and a little more typical.

From the Editor . . . Lucy Cusick

Hillary is now known for Living History. But at one time, she wrote It Takes A Village about the importance of community involvement in children’s lives. As a mom of a child with special needs, I have often wished for a village just to get through the day. Therapy, doctor visits, trips to the pharmacy, regular parenting, plus work, laundry, and house maintenance is enough for me to throw up my hands in despair. Just read Sabrina’s article for an hour-by-hour account of her day ~ we can all just add ‘ditto!’

The Cusick village consists of many people: family, who helps even though most are hours away; neighborhood and church friends who only need a phone call for extra hands, food, or prayer. We only have to ask for help – that’s the hard part – to receive it. And we are the villagers to our friends, offering help when asked.

FOCUS has built a village, too, a village of volunteers who supports our programs with the extra hands we need. We have volunteers for fund raising, for planning, for hospital visits, for support groups, for administration work. Some volunteers work many hours, some only one event a year. Every volunteer hour is an added bonus to FOCUS and allows us to offer so many programs of support.

We have many volunteers for our summer programs: “Under the Stars” family fun weekend and “Camp Hollywood” summer day camp. They frequently have little experience with children with special needs. Adult volunteers often come hesitantly, afraid that they will say or do something hurtful to a child or a parent; they leave with a new appreciation of laughter and love. Teen volunteers come with less worry. Both ages learn the lessons of seeing beyond disability and into the heart of a child. They understand, if only for a moment, the beauty of a smile.

The experiences of our volunteers can change attitudes and atmospheres. Fears subside and acceptance reigns. When our volunteers see a child with special needs outside of a FOCUS event, they are more willing to interact. They have learned the beauty and seen the love.

Thanks to each of our volunteers – for their time, for their energy, for their acceptance, and for their love. We are happy you are in our village.

Just Say Hi
By Ashley Thomas

Just say Hi
What could it hurt?
I could be a new friend
But you can’t see past my looks
Just say Hi, come talk with me

I’m no different than anyone else
I play sports, watch T.V., and hang out with friends
I’m sure you do too
I’m no different,
Just say Hi, come sit with me

While turning to stare at me
It’s possible you’ll run into a tree
You and I could be friends
Don’t pass me by; it’s not fair
Just say Hi, come have lunch with me

I want to scream at you
Cause you can’t really see
I’m no different from you
I’m just me
Just say Hi, you might be surprised with me

Ashley, 16, is a rising sophomore and enjoys playing wheelchair soccer and basketball and going to the mall with friends. Ashley has spina bifida.

Un Beau Violet
By Sharon Lang

After seven years of marriage, Gordon and I decided in one exact moment that we were both ready to be parents. I had played with the idea on and off for a year or so, but never once suggested it. This was amazing. We usually agree on all major changes, but one of us is usually a few steps ahead of the other. What an event! Our lives would be forever changed.

On April 28, 2000, our Madison arrived. After pre-term labor and pre-eclampsia, we were more than ready to be induced and to meet our new addition. The doctor mentioned that because meconium was present, the respiratory team would need to examine her before I could hold her. No problem; after all, I had the rest of my life to hold her. Two hours later, the doctor ordered an epidural after I was dilated to 9 cm. At the time, I was just grateful to be out of pain, but did not understand why an epidural would even help this late in the game. I pushed for a half hour, but made no progress. I thought this was because I had no feeling in my lower body. I later found out that she had a larger-than-normal head (macrocephaly).

The doctor used vacuum and forceps, and she arrived. My first thought was that I never expected a blonde baby!! After all, I was a brunette. Then I remember wondering why she only weighed 6 pounds 11 ounces, since I had gained 72 pounds!! Her head did seem a little large, but all babies have big heads, right? She was rushed to the transition nursery for 8 hours and then to the NICU. She had tachypnea and low blood sugar. I thought – temporary, temporary, no big deal, when can we take her home? The doctor then suggested genetic testing. I think I zoned out then; we had run the AFP, which was fine. I was well below the 35-year age marker, what could they possibly be looking for? He had no answer, just a precaution, he said.

Three months and several blood tests later, we got a diagnosis. She is rare indeed. Her condition(s) are partial monosomy 9p and partial trisomy 1q. To date, we know no one else with this condition. She is Unique – even in the unique category!! From the moment of her diagnosis, I vowed to see her, unconditionally first and foremost, and to support her growth second. She deserves to be seen for who she is, strengths and weaknesses, and to be loved in totality.

Madison turns three in a few months and progress has been slow. We hit a ‘therapy meltdown’ about a year ago. She refused to allow anyone to place any demands on her. All her therapists recommended a break. They felt she was burned out; I knew something else was happening.

We took three months off from everything but music therapy. She still resisted therapy, and after meeting with therapists and doctors, I had no answers. Finally, we found a behavioralist who had the key to Madison’s meltdowns!

Madison, being quite stubborn, had developed several behaviors to get out of therapy: falling asleep, throwing up, crying, and biting. She, however, loved bouncing and swinging; she would rather bounce on the ball for an hour than work on puzzles or feeding or anything difficult. The therapists thought that she needed the sensory input so when she threw a temper tantrum, they let her swing or bounce. Well, she had learned to manipulate all of us! However, after just three weeks of behavior therapy, she has been awarded the ‘child with the fastest turn around!’ The concept was two-fold: to give Maddy a sense of control and to give her a clearly defined task, followed by a reward. We began easy, with a task that we knew she could do. When she did the task, she received an immediate reward. We also verbally told Maddy the task and the reward. Slowly, we worked up to tasks that were more difficult, but continued to give the rewards. It was amazing!! She now stands on command for up to 35 seconds and laughs at the same time!! Maddy has always hated physical therapy, but now that she has been given a system, and therefore control, she knows the expectation and reward.

We are back on track, and although progress is slow, it is progress. I have learned to trust my gut, even when I have no training. She has been hospitalized twice; both times I had correctly diagnosed her days before the medical tests confirmed it (kidney reflux and gastritis). I have learned to push harder for her – and to insist on starting with the least invasive tests first. She has been tortured enough with invasive procedures.

Part of the today’s struggle is that Maddy is nonverbal. People seem to talk about her instead of to her. Lately, I began insisting that everyone talk to her, tell her what they are doing and what they expect from her. We have noticed that her behavior is better when she is in the know. We are constantly changing therapists and doctors, trying to find the right mix for her; I insist that everyone see her as a gift, not as a condition or a label. Labels are useful, but they can also be limiting. Labels help perpetuate stereotypes. In caring for someone who is so rare to care for, no label could ever fully capture her essence.

I think we will always have struggles, but I know God has given us a gift, a rare and priceless gift. We think of Madison as our own Hope Diamond. She is large (45 carats), rare and fancy grayish-blue in color (the exact color of her eyes). At first glance, you may not realize you are seeing a diamond; you may mistake her for a blue sapphire. I am amazed that so many people never take the time to recognize her sparkle, never dig deep enough to see her shine.

She sparkles mostly when she is in her element – in control! When we climb the stairs, she laughs because she knows the computer is upstairs and that she might be allowed to play her games. I love to hear that infectious laugh – it just tickles me and makes my heart melt.

If you too invest time and energy, you will se the rarest of gems, our Hope Diamond, un beau violet, Madison Lang, and you might even catch a giggle.

From the Editor
By Lucy Cusick

Sometimes you just don’t get the answers if you don’t ask the right questions. Now this is an observation, not a scientific fact. Over the years, I have stuggled with decisions about surgery, education, and treatment. Usually, I adopt the “make the best decision with the information that you have” motto and try not look back. Sometimes this works, sometimes it doesn’t. It’s not knowing if I have all the information that’s the tough part. How do you know that you know everything you should know?

When Josh was diagnosed, I read all about the diagnosis of cerebral palsy and seizure disorders, about different kinds of therapies and treatments, about bones and muscles and their connection to the brain. I talked to other parents of children with cerebral palsy; I especially liked talking to parents of children a little older than Josh about their experiences, successes, and failures. When a doctor would suggest a surgery or procedure, I tried to ask all the questions, but was never sure if I covered them all. I found that sometimes I didn’t get the answer, because I didn’t ask the right question.
This trend continued in school. During IEPs and other meetings, I tried to make decisions based on the information that I knew. This wasn’t too hard in elementary school since I knew all the teachers, classes, and children. In middle school, however, I found that the different kinds of classes (total inclusion, team-taught inclusion, interrelated inclusion, and self-contained special ed) were not clearly defined. Until I asked the question: What are ALL the kinds of classes did I get all the information I needed.

And now we’re looking into life beyond high school. The questions are plenty; the answers sometimes don’t make sense; the whole idea is overwhelming. What happens when the bus no longer appears every morning and afternoon? Now that’s a question.

When young adults reach the age of 22, they are no longer eligible for services within the school system. What’s next? The FOCUS parents of teens conference will address these questions and more. Save Saturday, September 6 and attend our conference. Registration and conference information will be mailed in the July/August newsletter.

Behavior Therapy
Michelle C. Winkles, M.Ed.

Positive behavior is crucial to constructive social interaction with others. When behavior is considered to be unacceptable or interferes with daily tasks, modification may be necessary. The basic principles of behavior therapy rely on the premise that all individuals have a desire to please others and live up to their expectations. Interfering behaviors can create a multitude of problems. Unwanted behaviors can affect a child’s cognitive, social and emotional development. Often, children with special needs may require this type of intervention to address behaviors for them to successfully function with others. Acting out and engaging in unwanted behaviors is quite natural and typical for most, if not all, children. However, when these behaviors interfere with a child’s progress, a plan of action must be implemented. Behavior therapy can be an effective means to increase the frequency of acceptable behaviors as well as decrease the frequency of unacceptable behaviors.

Although programs and plans may differ, behavior therapy is based on a system of reward and reinforcement that is delivered when the appropriate behavior occurs, as well as the removal of reinforcers that increase the unwanted behavior. The effectiveness of the consequence (actions that immediately follow the behavior) will ultimately modify or maintain a behavior.

When developing a behavior management plan, there are a few things that should be taken into consideration.

*Since many children exhibit multiple behaviors, it may be necessary to create a specific individual plan to deal with one issue at a time. If too many behaviors are addressed, a child may become confused, and the plan may be unsuccessful. The intensity and frequency of an unwanted behavior can be a means to determine the priority if multiple behaviors need to be addressed. If a child exhibits behavior such as task avoidance 10 times daily and tantrums 2-3 times daily, it would be quicker and easier to address the task avoidance which occurs more frequently and which interferes most in the child’s daily routine. Once the child has decreased the task avoidant behavior, a plan to address the tantrums could then be implemented.

*It is easier to create a successful plan if you are able to determine the cause or source of the behavior. Defining the possible cause of behaviors through a functional behavior analysis is the first step in creating an appropriate intervention. Often, different behaviors require different interventions. A child who exhibits tantrums (behavior that has been pre-determined as attention seeking) might be addressed through a process of extinction while a child who throws toys to escape a task might be dealt with by means of over-correction.

*The child’s abilities and limitations should also be considered, as not all interventions may be effective for all children. For example, a non-verbal child may not respond as well to a plan tailored to a child with strong verbal skills.

*The desired outcomes should be attainable. It may be necessary to gradually modify or shape the behavior to the desired outcome. A child who bites his hands in frustration to avoid a task might need a plan involving several steps. For example, the plan may consist of: (1) redirection to a more appropriate task such as stomping his feet, (2) teaching the child to stomp his feet and state his emotion, (3) implementing social strategies to teach the child to use only words to indicate feelings.

*A data collection or tracking system may be beneficial to evaluate the effectiveness of the intervention and to gauge when a modification may be necessary. A behavior tracking notebook might include: an operational definition of the behavior, outline of the specific intervention in response to the behavior, data indicating the frequency and intensity of the behavior and a rating of the effectiveness of the intervention for each occurrence.

*Consistency in implementing and maintaining the plan is imperative. Inconsistency can create confusion and may intensify the unwanted behavior. It is beneficial for all involved with the child to be aware of what specific interventions are to be done in response to the child’s targeted behavior. This will increase the likelihood of the interventions effectiveness.

Because all children are different, behavior management plans will vary and should be child-specific to ensure an effective plan is implemented. When used consistently, behavior therapy can help create a happier child and family.

Michelle C. Winkles, M.Ed. is an Applied Behavior Analysis/Educational Consultant. For more information please call (404) 271-6501 or email: michellewinkles@hotmail.com.

From the Editor . . . Lucy Cusick

The annual education conference is over. We are busily preparing for "For the Love of Children" dinner, dance, and silent auction. We are laying plans for a wonderful summer at Camp Hollywood. Saturday Respite is growing and flourishing. And I have no inspirational stories to write. As I racked my brain to think of an encouraging, humorous, and enlightening memory, I started thinking about what it means to be a special needs family. Here are a few of mine. E-mail or call yours in. The next time I have writers' block, we'll publish them!

(With apologies to Jeff Foxworthy)
You Might Be A Special Needs Family, if

You know what 9 or the following 10 abbreviations stand for: IFSP, IEP, ESY, AFO, OHI, PDD, NOS, MID, PT, OT, ST.

You really did send your child to kindergarten in diapers.

Your child has more doctors than the rest of the family combined.

You sleep in a sweat suit in case you must call 911.

You have locks and alarms on all doors leading outside.

You save vacation days for surgeries.

You threw away all the books you bought on Child Development.

A trip to the bathroom is counted as "time for yourself."

You know the difference between an 'inconvenience' and a 'real problem.'

A Lifetime of Toilet Training
Anonymous

I've browsed them all: Toilet Training in a Less than a Day; Keys to Toilet Training; even Everyone Poops! I've been on-line. I've talked to medical specialists. And now I'm writing as a mother with 14 years experience in toilet training! Maybe our experience will help someone else in their own quests to watch their Ps and Qs - sorry, that was just too good to pass up.

Our son has cerebral palsy, developmental delays with a history of seizures. I'll call him "Jack" to offer some semblance of anonymity and dignity. After diagnosis, we struggled with his future - would he walk, would he talk, would he always wear diapers? As we grew into his diagnosis, realizing that the picture was not as bleak as initially presented, we began to set goals in our own minds. If he wouldn't walk, maybe he would be independent in a wheelchair; if he couldn't talk, maybe he could communicate with ever-improving technology; and well, he'll just have to be potty trained.

Typically, child experts say that a child must be 'developmentally ready' to be toilet trained. Typical children figure out how to control the muscles that 'produce.' We were afraid Jack might never be 'developmentally ready' on his own; once he was dry for several hours at a time, we decided to move forward. We tackled #1 first and began 'trip training' or taking Jack to the potty at regular intervals, in hopes of catching him in the act and therefore teaching him the process.

Trip training also worked for us because of Jack's physical limitations and inability to use toilets without a toddler toilet seat. (An occupational therapist can also help with positioning.) We determined early on that Jack couldn't stand and urinate; his cerebral palsy affected his standing too much. We luckily found a toddler toilet insert at Wal Mart that worked for him. He didn't need a lot of support, just the security of a small back and a smaller hole. (If you do find an affordable toilet seat that works for your child, consider purchasing several: one for the car, grandma's, school, etc.) For children who need more support, see an equipment vendor or do an on-line search. Children - especially those with physical disabilities - feel safe and secure when their feet are flat on a surface. We taped several Atlanta phone books together and kept them on the floor under the toilet so his feet would not dangle.

And so we began the long journey. In the beginning, Jack sat on the pot before bath and first thing in the morning. He wore diapers during this process. We had enough stress without adding puddles to our lives. After a few months of morning and evening sit-times, we moved to every two hours, trying to 'catch' him in the act! Looking back, I note only moderate success. He would sit for 20 minutes, we would get him up and re-dressed and he would soak a diaper. I truly think he couldn't squeeze the right muscles on command.

We learned at this point to give him lots of liquids during the day. The more he drank, the more chances we had of 'catching' him in the act on the toilet!! And, as with everything, the more he practiced, the better he got! We did withhold fluids at night to help with nighttime continence. I also learned that fruit (apple slices did the trick) every day was necessary for bowel regularity. Bowel training was not as difficult once we got constipation under control. Consult your child's pediatrician for diet suggestions or medication.

The cerebral palsy really slowed things down - a trip to the potty took at least 10 minutes, usually longer. Emptying his bladder completely was an issue. Since Jack was quite cognitive, and knew what we wanted him to do, we talked a lot about squeezing muscles and emptying completely. We made up funny games to 'encourage' him to 'try again.' Looking back, we were truly obsessed.

So we're up to 4 years old and wearing Pull-Ups. A good day was a one Pull-Up-day. A typical day was three Pull-Ups a day. Frustration was an easy trap because we felt he understood what was expected; control between trips was now the goal. We had to make it uncomfortable - into 'big boy pants' was the next step. Cotton training pants were collected - many pairs. If he wet those, he would feel it, right? Well, not always. The cerebral palsy affecteds his sensory input, too.

But we persevered. He wore those thick underwear until he was 8 years old. When he outgrew them, we cut the padding out and sewed it into real underwear. Because he crawled on the floor, I wouldn't risk the carpet by putting him in real underwear that would leak; after all, he couldn't run to the bathroom when it was too late! The padding gave some leeway for leakage and minor accidents, saving both of us from embarrassment.

Now, he's a teen. He has control and he recognizes the 'urge.' He still puts off going til the last minute; no jokes if it's been awhile. It's wonderful, though, that Jack is independent at home, but he still needs assistance when away from home. It has been our experience that people are NOT willing to assist - not at church, not at friends' houses, and only in school because they have to. The next goal is independence away from home.

My best advice? Prepare for the long haul. Don't start too early. Typical children are often over 3 years old before they are toilet trained. If you are using a reward system, reward yourself, too. One M&M for your child, ten M&Ms for you. Remind yourself hourly that if they could, they would be toilet trained. Most children with special needs do not purposefully have accidents. Guard yourself with laundry detergent, carpet cleaner, and patience. And mind your Ps and Qs.

Assistive Technology: How Can It Help Children
By Ann Leverette

Technology can play a major role in how a child with a disability can succeed in school. Children once thought incapable of reading and writing are using switches, alternative keyboards and mice to communicate, write, read and do math. The IDEA law (Individuals with Disabilities Education Act) mandates the public schools to provide Assistive Technology if it is determined that the student requires any adaptive hardware, software or augmentative communication in order to meet IEP goals. In Georgia, the lottery helps fund these devices. In addition, the use of computers in homes has risen dramatically in the last decade. All these changes make it imperative that we learn to use and program appropriately the software and hardware our children with disabilities need to be successful. These children should have training geared to their learning styles in order to learn to use the Assistive Technology in a meaningful and productive way.

Children with severe disabilities can often achieve success and control on a computer when they frequently have fewer abilities to manipulate their environment in other ways. Children with milder disabilities can have more success with learning new skills because the computer's feedback can be very motivating. The visual feedback helps retain interest and the auditory feedback can help train better receptive language skills. Adaptations are readily available which allow access for even the most physically involved child. Adapted keyboards can simplify the choices for a child who can physically manipulate a keyboard but cognitively is overwhelmed by all keys and their functions. Although there are many off the shelf educational children's games that hold attention and teach academic and problem solving skills there are also many adapted applications designed to help with specific skills and provide higher levels of feedback to children with special needs.

Special education software companies recognize the need to individualize programs for each student. A program such as Intellipics allows the user to input pictures and sounds relevant to the student/child. Auditory word processors read the characters typed by the user (or copied from other sources) by letter, word, and/or sentence. Word Prediction programs can be useful for children who need help with spelling and motivation to write more. Math programs such as MathPad and Access to Math allow a user to complete arithmetic problems on onscreen grids and have auditory feedback. Many of the adapted programs are based on universal design and come ready to use with an alternative keyboard, scanning switch input, increased auditory output for persons with visual impairments or through regular means. Settings can be changed and saved for each user. Even off the shelf software frequently has the ability to change settings which allow for greater access. Teachers and parents may not be aware that their educational software can be modified.

Access is the first step to making a computer a useful tool for a child. A child with the physical ability to use a mouse and keyboard, but who is not connecting the movement of the mouse with the movement of the cursor needs the task to be broken down into many small steps. With a switch adapted mouse the click can be put into a switch and controlled by the instructor. This way the child does not get lots of false clicks before the cursor is on the correct spot. Another technique is to put the mouse on an inclined surface in front of the screen thus having the mouse and the monitor in the same visual plane. Now "move the mouse up" truly means move the mouse up. Some software programs are designed to teach mouse movement such as Reader Rabbit Toddler and are helpful even for older children who are learning cursor control. Keyboard use can be a daunting task for children who don't have good perceptual skills. What sense does a QWERTY keyboard make? An alternative keyboard such as Intellikeys can be arranged in ABC order with fewer keys for children who can't understand the QWERTY layout or need a less complicated arrangement. For children with physical impairments finding alternative access is the key. Trackballs, switch scanning, head mice, and joysticks are some of the alternatives to explore depending on the child's control of his/her body and extremities.

Teaching the child to use the software and hardware can be the most challenging issue. The child may only be able to learn new tasks if given visual cues or have difficulty understanding a sequence of tasks needed to execute a program. This is when an understanding of the child's learning style is imperative. Often in learning situations I have observed instructors repeating directions over and over and never allowing the child to quietly process the request and have time to respond. How often has a child with language difficulties repeated a line he/she has heard or responded to a request 2-3 days after the incident? Could this be how long it takes to sort out the incoming stimulus and then gather a response? A technique I teach in trainings is called the 15-second rule. When giving a child with learning problems a verbal request allow 15 seconds for a response. Be quiet and time yourself for 15 seconds. You will be amazed how long the time takes to pass. Some children may need more physical input from an instructor to execute a task. Some children are confused if you talk to them and show them at the same time. Knowing how a child processes information is imperative to the success of the task.

Children with disabilities seem to learn computer skills faster than us aging baby boomers! Two year olds use VCR's and can pick out their favorite video even though they can't read. Technology is a part of our society and can greatly enhance ones' life. But having a computer in the classroom or home is not the final answer for getting a child to learn. Instead time, good teaching, problem solving, patience and pairing appropriate assistive technology with tried and true methods of learning is the way for children to learn new skills and build onto old.

ATL3 is an Assistive Technology company designed to meet the needs of the individual learner. We work with other service providers and the client and their family to find the learning style of the client. Individuals work with an instructor to learn use of hardware or software to meet academic, vocational, and/or leisure goals. For further information call Ann Leverette at 404-929-9959 or 404-697-3182.

One Mom's Guide to Surviving a Derotational Osteotomy
by Lauren Seidl

My son is 6 years old and had a derotational osteotomy on June 3, 2002. Here are some things I learned. Feel free to call me (770-642-6424) if you have questions or want to talk to someone who has been through it.

Preparing for surgery
1. Purchase diapers to have for the first few days after surgery, even if your child is toilet trained. After removing the catheter, even toilet-trained children may have difficulty with continence. Diapers will keep the bed and the casts clean.
2. Purchase some new - and pack your child's favorites - videotapes for the time in the hospital while waiting for surgery and for the days following sugary.
3. Make some shorts that Velcro on both sides. See below for directions.**
4. Get disposable bathing cloths. They are easier than sponge baths and won't get the casts wet.
5. Bring books to read or something to do. You'll have free time when your child is sleeping during the day; magazines require the most entertainment for the least concentration. Also bring your address book so that you'll have phone numbers of friends and family.
6. Send letters to the children in your child's class, neighborhood, family, or church, telling them about the surgery. I included an addressed stamped envelope and asked all the kids to draw him a picture or write him a letter while he was recovering. James really enjoyed getting mail every day.
7. Put cardboard boxes on the floor of the car to the height of the seat your child sits in. They will support the casts on the way home.
8. Pack healthy snacks for yourself while in the hospital and change for the vending machines. Call FOCUS - they'll bring chocolate!
9. If you have surgery in the summer, make sure you have activities planned to keep your child busy, and, if possible, involve other children. My son had a great time at Camp Hollywood and a handwriting group at Children's Healthcare at Scottish Rite....even in his casts!

In the Hospital
1. Pain management. Talk to the doctors and nurses about pain management. For the first two days after surgery, pain medication should be given regularly. About 12 hours after the surgery, muscle spasms will begin. Pain from the surgery and pain from the muscle spasms can be treated differently. Try to work out a schedule for pain medication so that your child can receive medication but be awake to eat meals. Keep up with the medication schedule so that you can remind the nurses when medication can be given. Time activities like sitting up or getting into a wheelchair for about 30 minutes after pain medication is given.
2. The days in the hospital will be worse than you imagined....but they won't last forever! Between the pain and the spasms, you might not even recognize your child (or yourself!!). Use the medications prescribed as frequently as allowed. The muscle spasms and pain will go away in about a week.
3. Try to keep your child awake more each day so he/she will sleep at night.
4. If you are a two-parent family, take turns spending the night with your child at the hospital. For single parents, find someone to relieve you. You'll be exhausted and find the situation harder to deal with if you don't.
5. When visitors come and ask what to bring, tell them home-cooked FOOD!! Hospital food gets old really fast!

Getting Ready to go Home
1. Transition to oral medications the afternoon/evening before you go home so you get used to using them to manage the pain and muscle spasms.
2. Get the pain and muscle spasm medications filled on the way home - or send a family member ahead to get this done.
3. Take home ALL of the pillows from the hospital! You will need them to make your child comfortable at home, and the hospital is only going to dispose of them.
4. For the car ride home, put the front seat all the way up to make the most leg room in the back seat or push the front seat all the way back to make the most leg room in the front seat if you have a 2 door car. Stack cardboard boxes on the floor in front of the seat. Put a pillow on the boxes. This way your child can sit comfortably in the car with the seat belt on.

At Home
1. For the first few days at home and at night, I kept my son in diapers. This prevented accidents and kept the casts and bed clean.
2. Put a large Rubbermaid tub in front of the toilet to support the casts for toileting.
3. A patio lounge chair covered in a quilt makes a great chair.
4. A sit up pillow that you use to read in bed works great on the floor when placed in front of the couch for support. My son enjoys sitting on the floor and playing because he couldn't do it before the surgery.
5. A bed tray or lap desk with legs provides a great surface for meals, writing and playing.
6. Couch cushions placed on the floor make a great place to do time lying on the stomach as the cushions keep the toes from hitting the floor.

**Directions for Making Side Velcro Shorts
1. Buy cotton boxer shorts a size larger than normal so they will fit over the casts. I bought dark colors so they could serve as shorts as well as underwear.
2. Open the side seams on both sides.
3. Cut the elastic at the side seams.
4. Sew Velcro on each side. Make sure the prickly Velcro is away from the skin.

Twenty Years of Support
Lucy Cusick

In 1983, Susan and Jim Calhoun co-founded FOCUS with Jim and Lynne Conboy. Their children shared a hospital room and in each other they found a place to share their fears, tears, joys, and love. In a recent letter of support, Jim Calhoun writes, "My wife, Susan, and I co-founded FOCUS with another couple in 1983 as a support group for families whose children are diagnosed with chronic and/or terminal illnesses. With the encouragement of our pediatrician, Dr. Tom Mahon, we began this group as a therapeutic effort to channel the pain and struggles we had encountered as parents of two terminally ill daughters into something that could benefit other parents facing similar circumstances. We initially envisioned FOCUS as being a small network of parents who could informally support one another through sharing personal experiences in dealing with their own children and with the medical community who assisted them. Based on our experience, we particularly saw a need for such a group to be available to parents of children who were diagnosed with rare illnesses that weren't served by other organizations. We didn't initially envision needing much in the way of resources beyond telephones and parents who were willing to spend some time and who would take a genuine interest in one another. We also didn't initially realize the numbers of families that needed FOCUS services until we began to get referrals from physicians, hospital staff and others who became aware of our existence. Within several years, it became apparent that the demand for services was too great to be met strictly through volunteers."

Susan resigned as director of FOCUS in 1994 because of her own health, leaving big shoes to fill, but continuing to support FOCUS and encourage me. We moved the filing cabinets and records from her bedroom in Conyers to my basement in Doraville. From my basement, with one phone, one computer, one dog, two cats, and a fax that worked only when you pressed the 'start' button, FOCUS continued to grow. Within three years, we officially outgrew the basement and moved to a professional office park. Currently, we reach over 1600 familes in metro Atlanta through a variety of programs.

Twenty years later, the official mission of FOCUS is the same: to offer emotional (share groups, hospital visits, telephone calls), informational (annual conference, newsletter, website), and physical (Camp Hollywood Summer Day Camp, Saturday Respite Child Care, Under the Stars Family Fun Weekend, and Family Activities) support. We are proud that both the numbers of families we serve and the number of programs we offer have increased; we have slowly added staff and office equipment to accommodate this growth. We listen, refer, connect and care. You see, we've all been there and we know how hard some days are.

As our programs have grown, however, so do our needs for funds. For FOCUS to continue to offer these programs, and to grow to reach more families, we need help! Families and friends often have corporate and/or foundation connections that help nonprofit organizations, especially those that serve their employees! Our biggest fund raiser "For the Love of Children" dinner, dance, and silent auction is March 15, 2003 at Atlanta Athletic Club. We need sponsors and auction items. If your company has a community involvement committee, please let us know who, what, where, when, and how!!

Sponsorships: $8,000 includes threesome of golf at Atlanta Athletic Club, up to 24 tickets and name on invitation
$4,000 includes up to 24 tickets and name on invitation
$2,000 includes up to 12 tickets and name on invitation
$ 750 includes 4 tickets
$ 350 includes 2 tickets

Auction: No item is too big or too small. Vacation homes; event tickets; hotel packages; gift certificates to restaurants; gift baskets or items to create gift baskets. The auction is a wonderful way to support FOCUS and our mission.

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From the Editor . . . Lucy Cusick

This year will be the first full year of my being the mom of two teens. Gone are the matchbox cars, barbie dolls, and good-night stories. We can all go to a PG-13 movie legally, go our separate ways in the mall, and sit in church without wiggling.

Gone also are the days of two children playing together. Now 17 and 13, respectively, Josh and Jessica have mostly different interests, friends, and activities. As children, they played together well - mostly under Jessica's direction. She taught Josh how to imagine, how to make a giant mess, and how to open more than one Christmas present at a time. He taught her how to spell and still serves as our family's rolling encyclopedia, knowing more trivia than is normal for any one person.

For the past two years, however, our family has been in transition, so to speak. Jessica - being quite bright - noticed quickly that Josh couldn't walk. She even caught on early that he often needed short, concise explanations repeatedly. Only recently did she realize that Josh could be annoying and downright embarrasing. Being in different schools, their social paths rarely crossed. However, they are now in the same youth group at church. She alternates trying to ignore him and trying to correct him. And I know just how she feels - I had two older brothers and, as an adolescent, could be embarrased by just their choice of shirts - as if I was responsible for how they dressed!

As an adult, it all makes sense, but as a mom, it is heartbreaking. For Josh - who has learned to snipe back - and for Jessica - who is just learning about life. So mostly, I just stay out of it, telling them both that respect for each other is required; no one makes fun of the other even if I can't prevent them from ignoring each other. But I see the light at the end of the tunnel. Jessica is recognizing that Josh's actions are not her responsiblity - and that no one ever thought so - except herself. Small acts of kindness are replacing withering stares and rolling eyes. Unasked by me or by a counselor, she took the lead in moving the youth group to a table with easier access so that Josh could join the group at a youth dinner last month. Two weeks later, during the annual youth church service, they were both sitting 'up front.' I noticed that Josh didn't have a hymnal and, of course, couldn't go get one; no one noticed since he rarely sings anyway. Except his sister. She went down on one knee and shared