Information Avenue Archives

The "IT" Alternative
By Patti Allen

Shhh!! You are not supposed to talk about IT. If you choose IT, someone might think you are a bad parent. If you choose IT, someone might think that you are giving up too easily. If you choose IT, someone might think that you are ashamed of your child. Worst of all, if you choose IT, someone might think that you don't love your child. Reality is that no two families, no two situations, no two children are exactly the same, so no one has ever walked in your shoes. If you find in your personal situation that you must choose IT, then no one has the right to judge.

"IT" is residential care for children with severe physical, mental and medical disabilities. IT is not a widely publicized option, IT is not a "socially popular" option, and most all would agree that IT should be the last care option, after all others have been exhausted. IT is however, an important care option that families do need to know exists.

I am not the mother of a child with special needs, but I have worked with and loved hundreds of them since my graduation from college in 1987. I have worked with, cried with, struggled with, been frustrated with, and loved their parents as well. All of this has happened because of the one and only place that I have worked since graduation... "IT." For me, IT is a remarkable place in Louisville, KY, called the Home of the Innocents Pediatric Convalescent Center, a residential facility providing short term, long term and respite care for severely physically and mentally challenged children with chronic and life-threatening medical problems.

The parents of the children who reside in our care are far from being bad parents; they would never give up on their children, they are not ashamed of them, and they certainly have not stopped loving them. They have, however, reached a point where they feel, for many personal reasons, that they can no longer provide care for their children in their homes. For most of them, the decision is reached after years and years of battling all of the denials, rejections and feelings of drowning that parents of children with special needs so often experience. Many of them reside in small towns where help is available on a limited basis, even if it was approved. For most, long term care was something they thought they would never consider until they felt they had nowhere else to turn...

Tre’ was having seizures approximately every 26 seconds. For his exhausted mother, Crystal, deep sleep rarely came, as she heard every bedrail squeak and every deep breath. Being diagnosed with severe cerebral palsy, a severe seizure disorder, severe cognitive delays, functionally blind and deaf, and receiving all medications and feedings via G-tube, meant that Tre's care needs were intense and around-the-clock. Tre's father, Jerel, helped as much as he could, but he had to get some rest so he could work to support his family.

Their labor of love continued, 24 hours a day, without a complaint, until the pediatrician noticed some worrisome changes, not in Tre', as you might think, but in Crystal. Plain and simply, Crystal was suffering from extreme exhaustion. Despite the help and support of family, friends, and her loving husband, Crystal's body seemed to be saying that she needed a break. Something had to be done. At the insistence of the pediatrician, they scheduled a tour at the Home of the Innocents, and promised to try to be open-minded.

As their tour began, Crystal and Jerel were greeted by the Charge Nurse... who had a bottle of nail polish in her hand. Crystal silently and sarcastically wondered if they had just interrupted a manicure that she was about to give herself. A few steps into their tour and Crystal realized that a manicure had been interrupted, but it was one being given to one of the children. Crystal said it was that one simple bottle of nail polish that helped to open her ears, her eyes, and her mind, to hear, see and think about the Home of the Innocents in a way that she might not have otherwise. It helped her to see the love that was intermingled with the care that the children at the Home of the Innocents were receiving.

Crystal and Jerel tried for a while longer to maintain Tre's care at home using family and community resources, before making their heavy-hearted decision to place Tre' at the Home of the Innocents. On the day of admission, with tears flowing freely, an arm reached around Crystal and a quiet voice said, "We promise we'll love him just as much as you do." Even though Crystal knew that a parents' love surpasses that of any other, she knew that the message was that the best would be done to care for Tre’, in every way, in their absence.

More than five years later, Crystal says that promise was kept. She and Jerel visit as often as possible, and they know that Tre' is very well loved and cared for. Occasionally Tre' goes home for visits, and each time he returns, Crystal and Jerel have their hearts broken all over again. Now, however, they comfort themselves with knowing that they can call and visit 24 hours a day, that they will be contacted immediately if there is ever a problem with Tre', that "fresh" staff will be caring for him after every eight hour shift, and that they can always be as involved in every aspect of his life that they are able.

The Home of the Innocents is the only fully dedicated pediatric nursing facility in the state of Kentucky. The 46 bed facility provides 24-hour skilled nursing care to medically fragile children ages birth to 21. Parents or guardians who place their children in the care of the Home of the Innocents Pediatric Convalescent Center, no matter how short or long the stay, retain full custody and continue to be actively involved in their children's lives, supported by a team of professionals. The safe and nurturing environment is enriched with a multitude of activities and programs. It does not exist to try to take the place of families, but simply to help fill in the gaps, however large or small, for families in need.

For Garry and Kim, parents of a 14 year old daughter, and twin 9 year old sons with many special needs, the gap was becoming larger every day. Garry and Kim were feeling financial strain because the many and varied needs of the children made it too problematic for Kim to work outside of the home. They worried constantly about their daughter and her feelings of self worth, as her needs so often had to be met after those of her brothers. They worried that Christopher, who is blind, cognitively delayed, has cerebral palsy, asthma, and a seizure disorder, was not reaching his potential, because there was no time or energy left to work with him. They worried that Jonathon who is blind, has cerebral palsy, is severely cognitively delayed, non-verbal, non-ambulatory, has a severe seizure disorder, and is tube-fed, was feeling the anxiety of everyone in the house.

Tension in their home was constant, Kim was exhausted, and her health was fair, at best, when Garry mentioned looking into care for Jonathon outside of their home. Through it all, that had never been mentioned... and Kim was shocked that Garry would even mention "IT." Kim looked to her close friends, and her brother who helped her to see that Garry was only trying to find a workable, livable solution for the whole family, and that it was OKAY.

Kim toured the Home of the Innocents, did her own informal surveys, talked to parents of other children residing there, and agreed to a two week respite stay for Jonathon. With that being successful, she and Garry later decided to pursue long term care.

It has been a year now since Jonathon came to live at the Home of the Innocents. Kim and Garry still miss Jonathon terribly, have occasional pangs of guilt, and sometimes worry about what others who don't understand might think, but they never second guess their decision. They visit frequently, take Jonathon home as often as possible, and participate in family activities. Though the change for their family has been traumatic, they remind themselves that they are, now and always, still a family.

The top notch staff at the Home of the Innocents provides excellent care, including a pediatrician on call 24 hours a day, IV therapy when necessary, a full-time respiratory therapy team, and ventilator services for those in need. Physical, occupational and speech therapy are available, as well as appropriate school programs for all children. Chaplain services are available to all staff, family and residents at any time, and families are encouraged to express themselves through the Family Council. Of course, childhood and special occasions call for activities including everything from horseback rides during Derby week, to pajama parties and sock hops, to over-night camping trips at a nearby accessible camp.

Activity and volunteer departments work hard to keep a wide array of activities planned, keeping in mind that a predictable routine is important for the children as well. Each child's day begins by getting freshened up, dressed, and for those not tube-fed, being fed breakfast in the dining area by a familiar volunteer or staff member. Next, organized chaos ensues for a short time while all of the children make their way to their appropriate school programs, either on or off site. After school, it's time for a short rest and "quick check-up" by the team nurse, with baths and hair washing to follow. Evening brings dinner in the dining area, followed by visits from volunteers, or participation in a group music, story or craft activity. Bedtime rituals are individual and personal from listening to The Velveteen Rabbit cassette, getting a visit from Mom and Dad, or watching the pretty colors of a revolving night light. Still others enjoy a nightly back rub, a snuggle in the rocking chair, or having a story read at bedside. Through these and other efforts, the staff at the Home of the Innocents hope to provide a safe and nurturing "home away from home" for the children so lovingly placed in their care.

Crystal & Jerel and Kim & Garry chose to share their private stories with the hope of helping even one family who might be struggling with the many emotional and social issues associated with residential care. Though IT may not be the right answer for everyone, IT has turned out to be a "right and OKAY" answer for their families... especially for two deeply loved, special little boys, Tre' and Jonathon.

 

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