Aquatic Therapy
Sandra Dupree, MPT and Amanda Curd, MPT0A.dventurous Kids Therapy Service

How Can Aquatic Therapy Help Your Child? Water is fun! Engaging pool activities combined with family involvement assist children in reaching therapeutic goals. In the water, exercisescan be hidden in fun activities. Both therapeutic and recreational aspects are incorporated by introducing swimming and water safety skills. Successful play interactions are enhanced as strength, endurance, and social skills improve.

The water can expand movement and sensory experiences of many children. It can provide a new sense of freedom and relaxation since the water allows time and support to perform movements that are otherwise more difficult on land. Allowing children to experience new movements in an environment that is supportive encourages developmental goals while having fun.

What is aquatic therapy? Aquatic therapy is the use of water and specifically designed activities to help restore, maintain, and increase function. It is often performed by physical and occupational therapists, and increasingly speech therapists as well. Aquatic therapy may include elements of adaptive aquatics (swimming), water safety, and tasks that help land based movements by incorporating music and games to make therapy fun. Activities are varied based on the child's interests and necessary functional improvement.

Who does Aquatic therapy benefit? The following diagnoses may benefit from aquatic therapy: Cerebral palsy, Hypotonia, Autism, Developmental Delay, Pervasive Developmental Delay, Juvenile Rheumatoid Arthritis, Sensory Integration Disorder, Spina Bifida, and Down Syndrome

How does aquatic therapy work? By using water's different properties (i.e. buoyancy, temperature), therapeutic benefits can be maximized. For children who have weakness or musclethat don't activate correctly (diagnoses can include cerebral palsy, Down Syndrome, spina bifida, etc.), the water provides a supported environment that eliminates gravity, which makes movements easier to perform. A child who has problems walking on land may be able to walk with very little assistance in the water.

This same supportive nature allows a child to experience a loss of balance with extra time for balance recovery and without the fear of falling. These "falling" experiences could not occur on land because of the risk of injury. Once the child recovers his/her balance in the water, the task is made harder by moving into shallower depths and eventually to land.

For children with difficulty processing sensory integration, the pressure of the water on the child's body can increase their body awareness, which in turn can decrease falls and/or clumsiness. Activity in the water also provides new movement experiences that can improve motor planning, which is the ability to plan and perform movements.

In addition to these benefits of aquatic therapy, other benefits can include:
Improvement of range of motion, flexibility, and willingness to move
Decrease in the perception of pain
Increase in endurance
Increase in circulation
Improvement in breath control
Balance tone

Not only does the child receive these therapeutic benefits, but he/she also learns the functional skill of water safety and the possibility of swimming while interacting with peers. This interaction with peers can increase self-esteem, improve body image, enhance moods, and increase patience.

Aquatic therapy isn't for every child. Children with the following conditions should not participate in aquatic therapy:
Open wounds or sores that are too large to cover
Contagious illnesses or skin conditions
Cardiac failure or severe cardiac problems
Urinary track infections
Allergies to pool chemicals

Aquatics can be considered an adjunct to land therapy, a primary therapeutic intervention, and a recreational activity. Once gains are achieved in the water, the skills are transferred to land based activities.

Who should I contact for more information? We would love to discuss your child with you to determine if aquatics is the right choice for both you and your child. It is a great opportunity for you to work one on one with the therapist to incorporate activities in the water to those that are more land-based. We also encourage our parents, if they are interested, to get in the water to work with both the therapist and their child. If you are interested in pursuing aquatic therapy for your child, please contact Adventurous Kids Therapy Services at 770-443-2788.

Other aquatic therapy providers:
Ann Leverette - 404-697-3182
Excellence in Therapy - 770-641-9239
Shephard Spinal Center - 404-350-7786
Kool Kidz 770-984-0958
Children's Healthcare of Atlanta
Alpharetta - 678-366-1212
Decatur - 404-321-7888

top of page

< go back

Scoliosis
by Robert W. Bruce, M.D.

Scoliosis is defined as an abnormal curvature of the spine. The spine's normal curvatures occur in the sagittal plane or as viewing the child from the side. These include: lordosis, swaying of the cervical spine or neck, or swaying of the lumbar spine or the lower back; and kyphosis, rounding of the thoracic spine or upper back. Additionally, the spine itself attaches to the pelvis and the normal relationship between the pelvis and the lower back allows for balanced sitting and bearing weight on the bottom of the pelvis.

When viewing the spine from the front, there should be no curvature. A curvature in the frontal, or coronal plane (as viewed from the front) greater than 10 degrees, qualifies as a diagnosis of scoliosis.

Scoliosis is generally classified into 3 types. The first type is idiopathic (pathos - cause of, idios - not known). This typically occurs during the rapid growth years of early adolescence and is far more common in females than in males. This can occur at younger ages as well.

The second type is congenital scoliosis. This occurs as a result of abnormal development or formation of the bones of the spine. Congenital scoliosis can result from either failure or formation of a bone (one side of the bone develops while the other does not), failure of segmentation or separation of bones (2 bones are attached on one side where they should not be), or a combination thereof. These curvatures are often associated with other congenital or birth abnormalities, such as abnormalities of the heart or kidneys, as well as the arms or legs.

The third type of scoliosis is classified as neuromuscular, or sometimes called paralytic scoliosis. This type typically occurs in children with special needs, such as cerebral palsy or spina bifida, as well as in many syndromes affecting overall development.

We will now concentrate on the areas of congenital and neuromuscular scoliosis. Congenital scoliosis generally presents very early in life, as this curvature is as a result of abnormal growth of the bone from very early in development. Findings associated with congenital scoliosis are a visible deformity of the back with humping of the ribs or increased rounding of the back. As mentioned before, congenital scoliosis is often associated with other abnormalities, such as congenital heart or kidney defects, as well as defects in development of the arms or legs. Congenital scoliosis is often diagnosed as a result of initial abnormalities in other parts of the body.

Congenital scoliosis is initially treated with observation. Braces (orthotic management) have no proven long-term benefit in the treatment of congenital scoliosis. If a curvature continues to worsen early on in growth, treatment is surgical, as continued observation allowing a curvature to worsen progressively will result in a deformity, which is eventually both uncorrectable and significantly deleterious to long-term spinal cord function or even survival. The take-home message in congenital scoliosis is that a child's care provider must establish the natural history of that particular curvature. These require very close follow-ups; sometimes as frequently as every 6-8 weeks, and decisions for treatment are often made very quickly as well.

Neuromuscular scoliosis can occur at any age. This occurs broadly as a result of imbalance of muscle pull. Some children develop neuromuscular scoliosis very early in life and experience very rapid progression of the curvature requiring early treatment. Other children develop a neuromuscular scoliosis, which progresses very slowly or to a minimal extent. Others still develop neuromuscular scoliosis later in life, very much like idiopathic scoliosis, and progression of the curvature generally occurs during the adolescent growth spurt in these children.

The problems with progressive scoliosis in general, and especially progressive neuromuscular scoliosis, are as follows: The children first of all begin to develop a deformity, which is quite apparent. The deformity then begins to affect comfort and function in standing, sitting, and even in lying down. The curvatures can progress to the extent that sitting in a comfortable position for any period of time may, in fact, be very difficult, if not impossible.

Additionally, there are general health risks associated with progressive scoliosis. These include progressive compromise of pulmonary (lung) function, as well as cardiac (heart) function. Pulmonary and cardiac function, however, are generally not affected until curvatures have progressed a significant extent.

The diagnosis of scoliosis is generally initially made on physical examination. Parents or primary care providers are often the first to realize that a child is beginning to develop a deformity of their back or scoliosis. Healthcare providers should keep a close eye on spine alignment and development in any child with special needs. However, certain children require more persistent evaluation. Scoliosis is far more common in children who have more significant developmental disabilities than those with very minimal ones. An example of this feature is that children with spastic hemiparetic cerebral palsy experience scoliosis at a rate of about 7 - 10% versus 2% of the general population. Children with diparetic cerebral palsy (affecting primarily the legs) develop scoliosis in a range of 20 - 30% of the time, and children with quadriparetic cerebral palsy develop significant scoliosis between 50 - 70% of the time.

Evaluation should initially include a careful physical examination. X-rays are often obtained if a diagnosis of scoliosis is made. The magnitude of scoliosis is measured by the "Cobb method" and an angle is measured. Generally curvatures in the 0 to 25 degree range are considered mild, those from 25 - 45 degrees are considered moderate, and those greater than 45 degrees are severe. Severe curvatures are defined as such, as they are at risk for continued progression beyond a point at which one reaches skeletal maturity. Additionally, as curvatures approach 60 - 70 degrees in magnitude they begin to significantly affect lung or pulmonary function.

Treatment of neuromuscular scoliosis is initially observation in all cases. The reason to consider observation as treatment is that careful observation will prevent a curvature from becoming severe prior to any communication or consideration regarding other treatment options.

Brace or orthotic management is often instituted in the treatment of idiopathic scoliosis; however, in neuromuscular scoliosis it has very limited long-term value. There are, however, significant short-term benefits to bracing certain neuromuscular curvatures. These include the ability to maintain and improve flexibility of a curve allowing a child to grow older and larger as well as healthier. Additional benefits to orthoses might be improved sitting position or function, such as sitting on the floor, standing, or walking.

Orthoses generally fall into one of two categories. The first are soft or positioning orthoses. These may be a simple soft foam or foam and plastic tubular type brace. They may also be bracing that is custom molded into a seating system such as a wheelchair. The second type of brace is more rigid and aimed at very careful control of the overall spinal alignment. Again, these have no long-term proven benefit in reducing the risk of progression of scoliosis or the ultimate magnitude of scoliosis, but can, in certain circumstances, put off or prolong the need to make more significant decisions.

The last treatment option available is surgical management. This should be considered a last resort and yet is often a very rehabilitative and restorative procedure. The decision to proceed with operative management of neuromuscular curves is delayed until the curvature is significant; is progressing rather rapidly; and is beginning to affect the child's comfort, function, or general health. At this point children are often having difficulty with sitting and activities of daily living. Surgery should be aimed first and foremost at preventing further curvature or progress of the scoliosis. However, modern day treatment for neuromuscular scoliosis can provide excellent restoration of near normal spinal alignment. As a result of this, the child should have significantly improved trunk and head position; sitting or standing balance; and ambulation, if the child were ambulatory and scoliosis was beginning to affect this.

In review, scoliosis is quite frequent in children with special needs. Progressive scoliosis can significantly inhibit quality of life and even the child's general health. Treatment options include observation, brace management or orthotic management in the short-term, and in some cases surgical management. Surgical management, again, should be considered a last resort and yet is not necessarily a catastrophe, as the results are often significant improvement in a child positioning and quality of life.

top of page

< go back

From the Editor . . . by Lucy Cusick

I usually write this column from the perspective of being the mother of a child with a disability. Occasionally, I assume the role of Executive Director to make myself feel important. This month, I am combining the two - parent and professional. Sometimes I can pull this off; other times I fall flat. Be nice.

I was not one of those parents who immediately rose to the call of being the mother of a baby with special needs. Quite the opposite - after Josh's premature birth, I wanted to erase the whole experience from my memory and start over. I walked around in a daze, doing and saying all the right things, but having a perpetual out-of-body experience. After the initial shock, however, I cast aside all the predictions. I think this is called 'denial.' I convinced myself that he would survive and that with enough hard work, he would be 'just fine.' So I plodded through the lengthy hospitalization, casting aside all suggestions that I call a support group, the mom of a child similar to Josh, the minister. You see, I didn't want to talk about it; no one could answer the questions I had, "Will he have disabilities - will he walk, will he talk, will other kids tease him, will he require care forever??" I didn't want to hear success stories - what if we weren't one? I didn't want to hear special needs stories - what if we were one? So, much like Sleepless in Seattle, I had to remember to breathe in and out and to put one foot in front of the other every day, until I didn't have to remember to breathe in and out and to put one foot in front of the other.

One day, I received a letter (this was all before e-mail was easy) from the wife of my cousin's husband's son from his first marriage. (Got that?) They lived in Boston and they had a child with a similar history. I don't even know what the letter said now. But I remember reading it over and over, holding it like a lifeline. I answered her letter. She wrote back. That was my first support, my first realization that it felt good to have company and that she really understood my mixed-up feelings of fear, joy, guilt, isolation, and love.

And then I found FOCUS. I went to a share group unwillingly. I left waiting for the next one. I needed those friends, people who lived with uncertainty and fear. People who knew about seizures and schools. People who knew what all those abbreviations meant. For all the support of my friends and church, they really didn't know how heavy the load was. You just don't know until it's you.

But the first phone call was so hard. I mean, there are no solutions to many of our problems. And it's hard to ask for help. It's hard to even know what to ask. But it's comforting to be with those who know the despair and the joy and how to breathe in and out without thinking.

Join FOCUS at any of our many share groups listed on the enclosed calendar. Groups are informal and attended by a trained FOCUS parent. If you need encouragement to attend your first meeting, call Lucy at FOCUS (770) 234-9111.

Information shared in September: From Tammie Kimball in Gwinnett: Rachel learned to drink from a straw with a "sip tip." To order, go to www.siptip.com or call 877-742-3555. Christy has trouble transporting her son who uses a wheelchair since she doesn't have a lift van. One suggestion was that she have a second wheelchair or stroller that can stay in her car just for transport. Friends of Disabled Adults and Children (FODAC) is a nonprofit that offers used medical equipment (wheelchairs, walkers, etc.) to families. FODAC also takes medical equipment and contributions of used clothing and household items; for more info call FODAC at 770-491-9014.

top of page

< go back

"IT WON"T BE PERFECT BUT IT WILL BE OKAY"
by Mary Ellen Bondhus
(Sam and Will's mommy)

With videotape in hand, Paul and I waited excitedly to see our baby on our first ultrasound. When the tech said with astonishment, "No one has told you that you are having twins?" we just chuckled, thinking she was warming us up with a joke. Well, she wasn't joking. There, low and behold, were Twin A and Twin B! We both burst into tears from pure shock and excitement, not knowing the emotional journey we were beginning.

About a month later, I went into premature labor. Surrounded by my family and OB Dr. Kelly holding my hand, we heard the perinatalogist say grimly, "It's Twin to Twin Transfusion Syndrome." According to the Twin to Twin Transfusion Foundation Brochure: "Twin to Twin Transfusion Syndrome is a random disease of the monochorionic (one) placenta during pregnancy with identical twins. It occurs when blood passes disproportionately to each twin through connecting blood vessels in their shared placenta. One baby, the recipient, gets too much blood flow, overloading his or her cardiac system. The other twin, the donor, becomes smaller and anemic because he or she receives too little amounts of blood." Often, twin to twin transfusion syndrome (TTIS) is a death sentence for twins.

The doctors stopped labor, and the only choice we were given to save our babies was amniotic reductions. (A new experimental laser surgery can be done if the uterus is stable.) Amniotic reduction is when a needle is inserted into the bigger twin's amniotic sac and drains out all the extra amniotic fluid.

So we began a war - a war to keep our babies alive. First, I had to carry them longer so I was on bedrest for eight weeks, mostly in the hospital, and had four amniotic reductions. We found out the babies were boys; we named the bigger recipient twin Sam (Gift from God) and the donor smaller twin Will (for God's will to live). We made it to 30 weeks when Sam's heart began to show problems and Will had not grown for almost two weeks. On June 21, 1999, an emergency C-section was performed and our precious Sam (3lbs. 5ozs) and Will (1lb. 14ozs.) were born. I knew things were very serious when Dr. Kelly said to me before I entered the operating room, "I want you to know that we all just stopped and said a prayer."

Eight hours later we were called to the NICU to hold Sam for what everyone thought was the last time. His blood was thickening like mud since he no longer had Will's extra blood to pump through his body. His heart valves were collapsing one by one. My husband and I cried and prayed harder than we ever have in our lives. The pain we were feeling was unbelievably excruciating. We needed a huge miracle...and we got one!

The pediatric cardiologist's exact words were, "My God! It's a miracle!" The fresh frozen plasma used to dilute Sam's blood did the trick. He was not out of the woods, but he was still alive. Just as we thought things were going to be okay for Sam, the neonatologist told us that he had a interventricular hemorrhage (IVH) between Grades 2-3. This meant he could have cerebral palsy and/or mental retardation. Meanwhile, little Will was loosing weight and having severe liver problems. We were sucked into a world of "ifs, maybes and I don't knows" as to what the future would hold for our little boys.

As time in the NICU went on, Sam got off the respirator and started gaining weight. Two months after his birth, he was released from the hospital. We had feeding tubes, pulse oximeter, oxygen, heart apnea monitor, and, somewhere in all that stuff, a baby at home. It was bittersweet because Will was not ready to go home and left by himself in the NICU. We felt so guilty not being able to be there all the time now that Sam was home. I was just brave enough to take care of Sam and all his equipment, when he choked while nursing and went gray and limp. My first thought was, "God, he almost died once, please don't let it happen again." After doing two rounds of CPR, he began to cry. That cry was the most beautiful sound I had ever heard.

Then one terrible night, the neonatologist called. Will had four very severe bradys (low heart rates) and they had a hard time "getting him back" after the last one. She asked us to have someone drive us to the hospital because Will would not make it through the night. There we were again, falling on our knees in fear of loosing our baby. That stabbing pain came back. Thank God, he did make it through that night. He had several necrotizing enterocolitis scares, infections and surgeries. Four months after his birth, Will came home.

One major battle in our "war" was over. We had both boys out of the hospital. Our family was finally together. We started Babies Can't Wait, many doctors' appointments, and therapies. We began to see the light at the end of the tunnel. Then when Sam was about 8 months old, we discovered that he had more brain damage than we had thought. The neurosurgeon said, "This means he probably will not ever be able to walk. If he does walk, he most likely will have to have help." That revelation was an enormous blow.

And more blows followed. Will has profound hearing loss in both ears and is deaf; he also has retinopathy of prematurity and asthma. Sam has profound hearing loss in one ear and moderate in the other ear. It was hard not to be depressed and feel sorry for our boys and ourselves. We fought to remember that we almost lost them. Still, it was hard not to always be waiting for the next "blow."

One afternoon, the physical therapist put Cheerios on a chair and stood Sam up and coaxed him to get them - a game we had played unsuccessfully over and over. I couldn't believe my eyes when I saw Sam take - not just his first step but five steps at once! This was an unimaginable answer to prayer.

Now, at age three, we still have therapies and doctor appointments. We have fought many battles and won not all but most. Smart, dramatic Sam walks, runs, dances and climbs. He has a slight limp, but he does them. He talks nonstop even with some speech problems. Will has feeding issues and auditory neuropathy. He is not a candidate for a cochlear implant for awhile because of his diagnosis and ear fluid issues. Will is a spunky little boy, catching on to sign language like a pro. It amazes me that for all their medical complications that they have such sweet, loving and fun spirits. Starting off with a grim diagnosis of Twin to Twin Transfusion Syndrome, with the help of doctors, therapists and God, we have thankfully come out with virtually a clean slate. All through the first three years with Sam and Will, even during the terrifying times, my husband and I heard a little voice say, "It won't perfect, but it will be okay." That voice was right!

For more information on Twin to Twin Syndrome contact:
Twin to Twin Transfusion Syndrome Foundation
International Office
411 Longbeach Parkway
Bay Village, Ohio 44140
(440) 899-TTTS
Webssite:www.tttsfoundation.org

top of page

< go back

"TWO FOR THE PRICE OF ONE"
by Celia Lawton (September/October 2002 Issue)

I remember the elation and relief that Frank and I felt the day our twin boys were born. Finally, after two months of bed rest and multiple trips to the hospital to stop pre-term labor, "we" delivered our children only two weeks prior to their due date. I say "we" because while I was in the bed watching TV and working crossword puzzles, Frank did all the shopping, cooking, and cleaning for our house. Plus, many times he drove me to the hospital in the wee hours of the morning, only to get up at sunrise and go into work.

Just three days after their birth, we brought Kirk and Scott home. Once again, Frank was right there beside me feeding, changing, and rocking those babies to sleep! After a while, we fell into a routine "of sorts" that allowed us to care for our children and watch them grow. It was during this time that a co-worker of Frank's learned that her child had autism. Frank experienced her pain firsthand as she described all the challenges that she and her family were experiencing. I even recall a night when Frank came home and said something similar to "what would we do if someone told us that our children were autistic? I can't imagine what that would be like." And at the time, we truly couldn't imagine it, because our children seemed to be developing normally.

However, we eventually would come to learn exactly what it was like. At the time of our children's second birthday, Kirk and Scott were only speaking one or two words. So we contacted Babies Can't Wait and arranged an evaluation for each boy. Two different dates were set so that the children could be assessed individually. On the first date, Frank stayed home with Kirk, while I took Scott to Babies Can't Wait. It was there that the evaluators told me that they suspected Scott was autistic-and I cried on the spot. I cried because I knew I was going to have to go home and break this news to Frank, and I also knew right then that the same conclusions were going to be drawn about Kirk the following week at the end of his assessment.

So just like that, as is the case with every special needs parent, our lives changed Our world became a series of doctor's visits, medical tests, and therapy sessions. We learned all about IEPs and Medicaid. I quit my part-time job to take on the full-time responsibility of helping my children. And through it all, we became exhausted because there was such a small number of people who could truly help us.

Then one day, a friend referred me to Susan Folger, Director of Healthcare Ministry at Mt. Bethel United Methodist Church. Susan was in the process of expanding a special needs Sunday school program at Mt. Bethel, and she welcomed Kirk and Scott into a class she was forming. Susan was also the one who told me about FOCUS and the Saturday Respite Program that Mt. Bethel hosted. Interested particularly in respite, I finally got the guts to call FOCUS. After asking the staff member hundreds of questions about the program, I signed Kirk and Scott up for the next scheduled respite at Mt. Bethel.

Then, I told Frank what I had done-and it was a hard sell. He was fearful of the quality of care that our sons would receive, and told me that he didn't think he could ever forgive himself if something happened to our children while we were away from them. His feelings almost prompted me to call and cancel, but deep down I knew that we needed a break. So we took Kirk and Scott to respite anyway, and I prayed that everything would go smoothly over the following four hours. And guess what? Something funny happened that day. We learned that being apart from the kids wasn't really as bad as we thought. In fact, it felt pretty darn good! And I knew things were really going to be O.K. when Frank asked me only two hours into our break time if I knew the date of the next respite!

You know, raising two autistic boys is a bit like living a Mystery. As the story unfolds, you begin to uncover hints about your children's personas, yet who they really are and what they truly are capable of doing remains unknown. I am always amazed by the things our children can and cannot do. Academics don't appear to be a problem for them. In most subjects, they are well advanced of their peers. At five years of age, we suspect that both of them are reading on close to a fifth grade level. But let a neighborhood kid ask a question like "what is your name?" and chances are they won't answer. It's not that they don't understand the words; they do. But something happens that keeps the circle of communication from closing. Maybe it's because they can't filter out all the other stimuli around them to really hear the question. Maybe they understand everything but simply don't care to answer, or maybe they want to answer but are not able to retrieve they words they need-similar to those situations that everyone experiences when we become "tongue tied" while trying to converse with someone important.

Noises are another surprising thing with Kirk and Scott. Frank and I can take them to an amusement park, and they are able to ride just about any ride there-regardless of height, looks, or sound. However, when I turn on the blender in my kitchen, they flee upstairs in a state of panic. And every once in a while, we experience a "great day." That's a day, for whatever reason, that things seem to just work smoothly for them. Talking is easier, noises are not as bothersome, compulsions are lower; and we think that maybe they are "turning the corner." But it usually isn't long before we experience a "melt down" day, leaving us to scratch our heads and wonder what could have changed in such a short span of time.

Being a supporting character in this Mystery isn't easy, and I must confess that Frank and I have yet to discover the best way to cope with all the plot twists. But thankfully, FOCUS has now been written into the story. These days, we are an entrenched FOCUS family. We are "regulars" at the Mt. Bethel respite, and Camp Hollywood has been one of the best programs that our children have ever attended. But it doesn't stop there. When Frank contacted Lucy Cusick, offering to volunteer for FOCUS, she asked him to join the FOCUS board. And later, when I learned of the assistance that FOCUS needed in obtaining additional monies for its wonderful programs, I offered my services to the organization. Having spent many years writing formal business proposals, it seemed like a natural fit for me to use those same skills at FOCUS for the purpose of seeking grants. That's why today, Frank and I are working for FOCUS in two different capacities. But together, we are committed to positively helping the organization, since it has done so very much for us.

It's funny how life has a way of giving you things you don't expect. For the first three months of my pregnancy, Frank and I planned for the birth of one child. It never occurred to us that we would be getting "two for the price of one." Before our children were born we knew we would love them unconditionally, but we had no concept of what devotion was until we became "special needs" parents. And while our dreams for them started off as a rather typical journey, they turned instead into an extraordinary atypical adventure-with many unexpected rewards along the way. One of those rewards has been our association with FOCUS. We consider ourselves so very fortunate to be connected with the talented people who work for FOCUS: from staff member, to board member, to family member, to volunteer. Our lives are being enriched by everyone we meet, and it's an awesome thing to realize that we never would have met any of you wonderful people had it not been for the special needs of our children.

top of page

< go back

From the Editor . . . by Lucy Cusick (September/October 2002 Issue)

It's been a few years since I've gotten "the call." You know, the call that makes the pit of your stomach hollow, the palms of your hands sweat, the center of your heart lurch. Even worse than "the call" is having "a message" left on your answering machine. And not being able to call back right away. You have to wait for them to call back.

No, I'm not remembering back to high school, waiting for the cute boy to call. Or back to my job search when I waited for the perfect job. I'm talking about "the call" .... from school.

Let me preface all this by saying that Josh is basically a good kid. Diagnosed at 18 months with cerebral palsy because of his prematurity, he is a typical first child. Wants to please, perfectionist, pleasant, but with quite a stubborn streak. We've never known if this was brain damage, neurological scramble, or inherited from his dad.

In kindergarten, "the call" meant he was "on red" for not cooperating. I think the words were "uncooperative and manipulative." By second grade, "the call" meant he was sitting in the hall; exactly, I might add, where he wanted to be sitting. In fourth grade, "the call" meant he was lost in the hall because they were changing classes. In sixth grade, he was sick. You name it....headache, stomachache, sore throat, ingrown toenail. In every grade, we always had the "he stares into space and isn't paying attention" conversation. Yet, he could repeat the lecture or instructions verbatim, if asked.

Regardless of how I felt about middle school, Josh did well among 1500 other students. I received very few calls; I probably called them more than they called me. I got the last "call" when Josh was 14 just starting high school. And while the problem was easily solved with only a telephone discussion, the pit-in-my-stomach, sweat-in-my-palms, fear-in-my-heart, don't-call-us-we'll-call-you feeling hasn't changed.

That helpless feeling never goes completely away. Everyone looks to me for answers. Yes, I know him best, but mom's approach wasn't always the best approach for school. Maybe my best bet is to disconnect the answering machine and throw away my cell phone. Who says being easy to reach is a good thing?

top of page

< go back

A word to professionals about parents, transitions, feelings, and dreams
By Janice Fialka (September/October 2002 Issue)
Email: ruaw@aol.com

Several years ago, my friend's son, Andrew who has Down syndrome, was approaching his sixth birthday-the first one celebrated in a regular education setting. Andrew was excited as evidenced by his gleeful announcements that that "soon, soon, I am bringing a big, big birthday cake with red balloons on it to school for all my friends." The teacher was preparing for the big day. She was also mindful that my friend was anticipating this day with delight, but perhaps with some sadness too. The teacher found a quiet, private moment and offered these words to my friend: "I know how wonderful birthdays can be for families. I have also learned that some parents re-experience some less comfortable feelings, such as grief or sadness. Birthdays and other milestones sometimes call up uninvited feelings. I just wanted you to know that this might happen and that I would be here if you wanted to talk about them." Stunned, my friend fought back tears. She wondered how this teacher knew what had been keeping her up at nights. How did she know? How did she know?

The teacher had validated her private experience and helped her know that she was not a "terrible mother" for having those feelings of worry, loss, and sadness-these normal feelings that can occur when you have a child with special needs. Andrew's mom left the teacher's classroom feeling less alone and a bit more normal than when she had entered the school on that day. She was not "cured" of sadness, but she felt lighter, less troubled, more able to move forward. She felt more at peace knowing that excitement and sadness can exist simultaneously, especially when parents are called to build new dreams for their children. The teacher's words of insight and compassion were as beautiful to my friend as the colorful balloons she later lovingly decorated on Andrew's cake.

This interaction took less than five minutes, but its positive impact continues for my friend, even today, ten years later. Seemingly simple and sensitive interventions by professionals do not go unnoticed by families who often struggle to make awkward and conflicting feelings fit together.

Birthdays, transitions, and other milestones are packed full of awkward feelings, especially when a family has a child with special needs. Early childhood educators and professionals typically have an awareness of and sensitivity to these strong, shifting feelings in parents. These professionals often are trained to understand the grief and coping process prominent during the initial diagnosis and early phase, when parents are raw to the unexpected news about their child. As a result, early childhood professionals typically address the emotions in skillful ways with families, giving parents opportunities to talk about their thoughts, worries, and concerns. This focused listening supports parents in their efforts to cope, adapt, and find their strengths as they rebuild their dreams. As the child moves on into middle and high school, however, professionals seem to be less cognizant of these normal, yet troubling, emotions which parents may re-experience during periods of transitions throughout the life cycle. It's not that these professionals are less sensitive, but perhaps less aware and more focused on other educational issues and demands.

I am gaining a whole new perspective about TRANSITION as my 17-year-old son, who has developmental disabilities, approaches his senior and final year in high school (gulp!). This BIG transition seems to give rise to almost every feeling in the universe, sometimes all at the same time. I find myself shoved back into that rocketing roller coaster of feelings so dominant in our lives when he was a toddler and we were just beginning our ride into the world of disabilities. Ordinary moments now will re-awaken strong feelings: a flyer announcing "College Info Night at the High School," moms chatting about the rewards of having teenage sons who drive cars and run errands, seeing a group of young guys hanging out at the basketball court. Unexpected events like these can cause me to sink into sadness, reel into rage, and whirl into worry. Humbly I whisper, "I want those ordinary things for my son too." I don't stay stuck in those tender moments forever but they do hit me and my family, often with no warning and little public recognition of the universality of these feelings for families with children with special needs.

My son has a rich life. He is on the high school track team. He is the very proud Board Member of a national group called Kids as Self Advocates (KASA) and recently traveled to St. Louis for his first Board meeting. He does volunteer work, is a member of People First and loves being a teenager. But my husband and I have had to work extra hard and long to ensure that he has meaningful experiences and rewarding relationships. We've had to be vigilant to counteract attitudes that unintentionally limit what people see as possible for him. We have had to work hard to ensure that folks focus on his abilities and not his disabilities. With the help of many caring people we are "dreaming and living new dreams." Most importantly, our son is finding his own dreams.

Still, there are those moments when we fight back the tears and fears.

When school, vocational, and health professionals are empathic and aware that grief is an expected emotion for most parents at any phase of our children's lives, we feel validated and empowered. It is helpful when professionals can listen and reframe our feelings of sadness and loss and recognize that they come from a deep core of love and passion to create the best world possible for our child.

The next time you are working with a family, continue to create strong goals, clear objectives, fruitful action plans, reasonable time frames, and responsive interventions. They are important ingredients to successful transitions. But don't forget to take time to sit with parents, to ask how they are doing, to inquire about what might be on their minds, and invite them to share a bit about what they are missing or wishing for. Let them know that it is not uncommon for parents to feel moments of grief, sadness, loss, fear, anger, guilt, worry, exhaustion, and even despair. Allow parents the opportunity to sit with someone who can acknowledge the troubling emotions. Remind parents that grieving is a normal part of the parenting experience. Great comfort and strength come from being in the company of caring people who are not afraid of feelings. Feelings are at the core of our humanity. To bury them is to bury our potential to connect with others.

Marsha Forest, a brilliant educator and leader in the inclusion movement, observed that "Martin Luther King said 'I have a dream.' He did not say, 'I have goals and objectives.'" Indeed dreams are what propel us forward, drive us to work harder. Of course we need clearly articulated goals, but ultimately it is our dreams that breathe life into our actions. Parents appreciate it when they have the opportunity to work through their original dreams and move into the new ones. Rebuilding dreams is a life-long journey, extending into every new phase and new milestone of our child's life. If professionals move too quickly into the action plans, they loose the opportunity to support parents through the phases of normal grieving, worrying, and wondering.

In Susan Zimmerman's book Grief Dances she poignantly tells the story of her daughter Kat who had Rett Syndrome, and the lessons learned by each member of the family in dealing with Kat. In one passage, her younger daughter, Helen says to her, "Don't you get it, Mom? Kat keeps us from just living on the surface?"

Professionals have that chance too. When you pause, sit, reflect, inquire, and invite parents to share their darker feelings and worries, when you validate those experiences and value this part of your job as much as the well-defined action plan, then the work you do is not surface work. It is the stuff that dreams, especially new dreams, are made of.

top of page

< go back