[Exceptional Families NEED Exceptional Friends]
[Supporting (SLC) Special Families: �An exploration of needs, supports, and possibilities ]�(A Microsoft Word document)
By Sandra M. Peters
I am a dreamer. I guess this could be a bad thing. I have known of some people tagged as a dreamer with negative implications. These implications being that the person spent his time simply dreaming of inventions or gadgets while his family was suffering financially and emotionally. But if it wasn't for dreamers, what would we have? However, one must do more than just dream about what he would like -- he has to be brave enough to at least talk about his dreams with others. I would like to now share my dream. Why? Well, why not? If I keep it to myself, there is no hope of it being any more than just my dream. If I dare to share my dream maybe someone will tell me that it is a good dream. Maybe someone will provide me with information that could lead to my dream becoming a reality. Maybe someone will tell me that parts of my dream already exist -- and that would be wonderful. And there is a glimmer of hope that enough people may join together and believe hard enough to make my dream become a part of history.
I dream of a building. This building is not a castle, mansion, or luxurious home. This building is not a fancy garage or workshop. The building that I dream of has a sign out front. A nice, prominent, and proud sign. Proud? How can a sign be proud? Well, the sign projects pride. This sign reads, "Special Families' Center". And I am honored to guide your tour through this building.
After entering the accessible front doors, we first see the reception area. Gena, the warm and pleasant receptionist is busy scheduling appointments for the many services available at this Center. Just past Gena is the door to the office of the Chief Coordinator of Services. As we enter this comfortable -- but not too comfortable -- office, the large scheduling board fixed on the wall draws your attention. You can see that the bulk of the Coordinator's job evolves around this board. Looking at the scheduling board you can see the many functions of our Center. The Special Daycare Center obviously has a life of its own as you can see that it is busy six days a week. The Conference Room is a challenge to jungle the many support group meetings, parent seminars, professional training sessions, and open conferences on a variety of issues. Since the Coordinator is not available for an introduction, we will move on.
Next I guide you down the corridor of six offices expected to soon be utilized by a variety of organizations. We expect the Autism Society to occupy one office and a group focusing on issues faced by families raising prematurely born children to occupy another. We don't have any official commitments, yet, for the other four offices, but do anticipate them to be full within the first six months of operation.
Returning down that corridor, we take a right, waving to Gena who is answering another phone call as we pass by her, and come upon the Lounge. This area is available to both staff and clients. The clients are mostly parents and they use this area to meet other parents or just as a place to go to relax. This Center was designed so that each individual unit or service will work will all the other services to fit the needs of families with children with special needs. Many parents bring their children to the daycare center for an afternoon and never leave this building. While their children are being adequately cared for, the parents utilize our well stocked resource library, workout in our exercise room, relax here in the lounge, or any combination of these things. This lounge is often used in the evenings for meetings of smaller groups that do not require the space available in the conference room, or those groups that prefer a more intimate setting.
Our next stop is the Daycare Center. Before the door even closes behind us, you get a forceful sense that this truly is the heart of the Special Families' Center. The aura of this room is that of any daycare center. Toys chugging and beeping. Children laughing in one area and having a minor dispute in another. A group around one table with a patient and caring man giving these children the experience of finger painting It takes a few moments before you even notice all the special equipment. Those children at that table, two are in wheelchairs and one is in a wooden adapted chair, and another one has a small oxygen tube taped under his nose. Looking to the back right corner of the room, we see Mrs. White at her desk checking the days schedule again. It is her responsibility to keep track of how many children are coming and going and when. She has to be sure that there is the right ratio of caregivers to children. She also has to be sure that the children that are scheduled for the day are matched to the right kinds of caregivers. Some children, like Johnny (the boy on oxygen) require that a Registered Nurse be present and if we get a new child we schedule the therapists or other professionals necessary to teach our staff about proper positioning, etc.
The daycare center is truly the heart of our purpose. We are here to serve the families of children with special needs. Note that I did NOT say we serve children with special needs but we serve the FAMILIES of children with special needs. Often in these families, one of the parents must stay home to care for the child with the special needs. This job entails much more than normal childcare duties in that the parents also have to coordinate all the services that benefit their child. They also have an array of appointments to keep with doctors and specialists and, of course, the regular weekly therapy sessions. Also, into their job description are the roles of spouse and parent to the other children. Somewhere in there is the responsibilities of keeping up a home and responsibilities to one's self. These families face issues that are foreign to most other families.
Typically, the question of both parents working evolves around finding a babysitter. But, for special families the question is finding ADEQUATE childcare for a child, as an example, on a feeding tube that receives four different kinds of therapy totaling 6 sessions a week. If a family can even find this dream caregiver, they will naturally have to pay for this kind of care and therefore, will be paying their whole weeks wages to the caregiver.
Our Special Daycare Center provides adequate trained staff to meet the needs of these families. Whether daycare is needed regularly so both parents can work or only one afternoon a week to give the caregiving parent a chance to recharge their batteries, we can meet their needs. Understandably, the divorce rate among these special families is even higher than America's overall general divorce rate. How can a couple spend time as a couple if there is no one to provide the care their child requires? Our Special Daycare Center is open on Saturdays from 8 AM until 10 PM to accommodate the need for the parents to spend time together -- alone. We have many families who now can go on a dinner-movie "date" one Saturday night each month. This alone, we believe, is saving many of our families. But, this can be coupled with our seminars and workshops specifically for the marriage that entails raising a child with special needs. We also have a staff counselor available to all of these special families.
Another aspect of the Daycare Center is the inclusion of the siblings. Often families can find a caregiver for the nondisabled children and not the child with a disability or if they can find someone to care for their child with special needs this person does not feel that they can also care for the sibling. Our daycare center takes ALL the children in the family and this builds on the sense of family and the relationship between the siblings is kept in tact.
I will address the cost of running this Daycare along with all of our services at the end of our tour. I still have a few more places to show you. Leaving the excitement of the children, we walk a few steps to the door directly across the corridor. Behind the heavy soundproof door, we are now engulfed in the atmosphere of the exercise room. Surrounded by many types and styles of exercise equipment, we are greeted by a couple of women pedaling their way to exhilaration. We work our way through the first half of the room and come to the open mats surrounded by mirrored walls. Sally, a parent volunteer, is doing warm-up stretches in preparation for the aerobics class she is about to teach. A man, drenched in sweat, smiles and says his farewells to Sally as he opens the door to the men's shower room.
After leaving through the same door we entered, we walk down the hall to the next door. Here, we are greeted by Beth who is cataloging a new shipment of books on Downs Syndrome. This is our respectable resource library. Beth strives to make our library the most complete and comprehensive resource library on all kinds of disabilities. We have an array of magazines and newsletters and we even subscribe to several medical journals to provide our parents and professionals with the most up-to-date information. Beth works closely with Steven, our resources expert. Beth oversees the entry of her inventory into our computer system and Steven is proficient in keeping accurate information on all organizations, agencies, and other resources available in our computer system as well. We are very proud to have a program that cross references our library records with Steven's information. This enables a parent to do a single search on a topic and get a list of printed material available AND resources available related to the same topic.
Our final stop is the last door down this hall. Unfortunately, there is not much in it today to show you but there will be soon. This will be the home of a variety of adaptive equipment and assistive technology devices. This will be both a show room where families can see what is available and actually try-out different equipment, devices, and programs AND it will also be a rental office for the equipment. This will mean that families will no longer have to purchase a piece of equipment for their child that will only be needed by their child for a short period of time. Fortunately, today there is such a variety of equipment and devices available that it will not be possible for us to have everything but we do intend to have a good amount of catalogues and other information available to be able to get the desired piece.
Well, that does conclude our tour. I hope that you have found this to be an educational and inspiring excursion. We feel that the Special Families' Center is really a well-rounded center to suit the needs of families raising children with disabilities. Oh, and the cost.....well, yes, it is very expensive. We are able to meet families needs based partially on Medicaid coverage for equipment rental, for instance, but we also operate on a sliding fee scale. Our main source of financial support is the many grants that we receive for our innovative project but we are also proud of our volunteer system. Our volunteer system enables these families to not only receive help but also to give it. One of the aspects of special families is how they all feel connected in a special way. So, we decided to use that aspect for the good of not only these families but for the community. An example of this philosophy is the daycare center, in addition to the professional staff, we rely on volunteers which are mostly the parents themselves. We work on a sort of trade-off basis, you watch my kids today and I'll watch yours tomorrow. If a mom volunteer's a day in the center, with her kids present of course, then we give her a day credit. And, Sally that is teaching the aerobics class, her kids are here free of charge while she teaches the class. This gives Sally a sense of herself, a feeling of doing something other than mothering, she has built a number of friendships, and has helped a lot of other parents. Sally's children look forward to the regular time to play with their new friends too. Many of these families qualify for respite services through programs such and Early Intervention or UCP but must find their own caregiver. They can choose us as their caregiver and the program offering the respite service will pay us.
Well, I can smell the coffee brewing and that means it is time to wake up. I hope you have enjoyed my dream. I return to the comfort of this dream often and do so hope that someday special families can utilize such a place in reality.
By Kelly Bell, as published in Preemie Parent Connection, January 199, Vol. 2, Issue 1
Perhaps you are friends of a family with a prematurely born child. Although the first hurdle s the family faces are those of the baby's long hospital stay and infancy, sometimes a lifelong disability is discovered as the baby enters his toddler and preschool years. Long after acquaintances have forgotten about the premature birth, true friends remain to support the family who learns that they must now cope with a disability. As such a friend, you will want to help the family accept the diagnosis and support the family in everyday life.
ACCEPTING THE NEWS
Although some parents may have a sneaking suspicion that something is not quite right, it is crushing to finally learn that a child has a disability. When parents learn that their child has such a condition, they will go through different stages of gri ef such as shock, denial, and anger before settling into an acceptance of the situation. Both parents may experience these stages at different rates. In addition to parents experiencing these emotions, grandparents and siblings also must cope with the diagnosis of a disability in a child.
When your friends first learn of their child's disability, you can support them by listening to their concerns, fears, and feelings. Do not try to push the parents to accept the disability quickly as every individual works through these emotions at his own pace.
First, you must examine how you are viewing your friends. You may find that your friends constantly focus on the child and her needs. Although your friends probably constantly care for and talk about their special child, remember that your friends have not really changed. They still enjoy activities and hobbies from earlier days. Even if they do not have the time or finances to participate in these activities, their interests have not disappeared. You may support your friends by keeping them up to date on things outside the demands of their family.
Second, remember that your friends did not ask for a child with a disability. They are just an ordinary family facing some extraordinary challenges. If you yourself have children, then you know how much energy children require. A child with a disability requires even more energy and dedication.
Third, consider the entire family when you visit and help the family with the disabled child. Having a premature baby is difficult but often parents think that the difficult times are short, perhaps a year or so, and that after that it's life as usual. But, when a family learns of a disability in their preemie, the new time and financial demands often strain a marriage. Of course, when you visit the family you will ask "How is your child?" You will also want to ask How are you doing?" to the parents.
EVERYDAY LIFE IS OFTEN DIFFICULT
Everyday life in an exceptional family is challenging. If your family does
not include a child with a disability, you may not be aware of how much time
and money such a child requires. In addition to helping the family accept
the news of the disability, you may help out with everyday life in the following
ways:
AND IF YOU ARE THE PARENT IN SUCH A FAMILY
Many readers of this newsletter are exceptional parents themselves, and not the grandparents or good friends. If you are the parent of a child diagnosed with a disability, do not hesitate to ask for help. Highlight the hints and tips that you want friends to know and post the highlighted article in your house or at your
Link up with a group of similar families. They will understand what you are going through and be able to suggest resources for raising your child. Ask your child's doctor about such groups locally. You may also want to look into national or computerbased groups and clearinghouses.
Do not be afraid to ask for help. Raising kids is a tough job anyway, but your job is more demanding. While some friends might shy away from large demands, many friends will be happy to baby-sit for an afternoon (perhaps during naptime), run an errand for you, bring you dinner, or clean your bathroom if only you ask.
Be willing to lower your standards. Your children are more important than a sparkling house or a homemade meal. Make your family and marriage a priority, and be sure to nurture all the relationships that exist in your home, not just those that involve your child. And, when you have had a particularly draining day, peek in at your peacefully sleeping child, and remind yourself that you are doing your best to nurture your special child in a way nobody else can.
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