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As Christmas approaches, many people will be traveling to spend time with family and friends. My parents and sister are visiting from South Africa and I've been reminded of the challenges that disabled people face when away from their home environment. My sister has mental and physical disabilities and although she can walk, she is slow and unsteady on her feet and needs a supporting hand when out of the house. I've had to slow my pace and look for the best ways to help her and accommodate her needs. This got me thinking about disabled visitors. If you have a disabled friend or relative visiting over the holiday season, there are ways to make life easier for them. A little forward planning can go a long way so read through these suggestions and make plans and preparations before they arrive. Accommodation for People with Disabilities Depending on the type of disability, a person may have specific needs when it comes to living arrangements. Meeting these requirements as far as possible can make the visit a pleasant one for all concerned. These are some of the areas to consider. Does the person need a special bed? What height, type of mattress and firmness is required? Will protective sheets be necessary and what about a safety rail? Do they prefer to shower or bath and do they need a bath seat or other equipment? Is your home wheelchair friendly and are there stairs and uneven surfaces? It is possible to hire some equipment and the best thing to do, is discuss the issues with the person concerned before making arrangements. What about the Garden People with mobility problems and impaired vision will find a hilly garden with rock features and narrow paths difficult to manage. If you are planning on outdoor entertaining, try and center this around areas that are suitable for your guests. Flat paved areas with shelter from the elements are ideal. Be careful of any loose stones or cracks that could snag a crutch or trip someone up. If you have a pool, invite the disabled person to join in the fun. Many find water exercise ideal and with assistance can have a great time. Even if they prefer to sit on the steps and splash around, it will be enjoyable for them. Food Requirements In some cases, a person will have dietary requirements. Ask whether they have specific needs such as pureed or mashed food or a general requirement such as low fat or sugar free. When laying the table, ask what they normally eat with. A spoon may be easier for some and a cup with handles may be needed. Some disabilities such as amputated limbs can be the result of a condition such as diabetes. Do some research and check the supermarket shelves for suitable foods and look for take-out stores that have healthy alternatives available. Disabled Parking Permits Most disabled people will have a disabled parking sticker or permit in their home town. Call your local authorities to see if this will be accepted in your area or make inquiries about getting a temporary permit. It can make life much easier if you are able to park close to a restaurant, mall or theater. Other factors to consider are the height of your vehicle, the number of doors and whether it can carry a wheelchair. Always allow extra time for a road trip with a disabled person as it takes time to help them in and out of vehicles and set up wheel chairs etc. Out and About with the Disabled If you know in advance that a disabled person will be visiting, make it a habit to check out disabled facilities as you go about daily life. Make mental notes of which malls and other public areas have the best restrooms and most accessible elevators for the disabled. All these places are required to provide these facilities but some are tucked away in obscure corners and are not as user friendly as others. Flying with a Disabled Person Airports, especially international terminals can stretch for long distances. It is often easier for people with mobility or visual problems to ask for wheelchair assistance. Some airlines require prior notification for this so make sure you ask when booking. It is also worth asking for a seat with extra legroom. People with mobility problems are normally boarded first and taken off last so be prepared for a long wait. Sightseeing with a Disabled Person By forward planning, you can include a disabled friend on a sightseeing trip. Obviously extreme sports such as bungy jumping and white water rafting are not going to be suitable but the person may enjoy watching you jump from a bridge or similar. Again, the key is communication. Make plans that include something for everyone and discuss what the family would like to do as a whole. Generally, disabled people would prefer to have a frank discussion about their limitations and needs than be left embarrassed and struggling with inadequate facilities. By asking what they need, you are showing concern and thoughtfulness. On the other hand, they won't like being the centre of everyone's attention and would hate to be the deciding factor in where the family is going and what they are doing. With open communication and planning, Christmas can be a wonderful time for extended families. It's a time to get together and share experiences and memories ... and learn to extend grace and mercy and consider others before ourselves. Continue reading
Posted Nov 29, 2009 at Take Root and Write
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In recent years, a greater awareness of the need for disabled-friendly buildings has arisen. Most new structures are built with this in mind and in many countries, public buildings are required to provide wheelchair access and wheelchair toilets. Even so, there are often times when disabled people may feel uncomfortable in a church environment. What does a Church Building need to be Disabled-friendly People with mobility issues or wheelchairs and those with sight problems need level floors, wide doors and access ramps. Wheelchair toilets are a must and flat wide paths through garden areas are useful. The best way to determine what a particular facility is lacking is to ask disabled people who make regular use of it. It may be something as simple as a hand rail or it may require major renovations. At the end of the day, can we place a price on making our church user-friendly? What other ways can a Church cater for the Disabled There are many little actions that show people with disabilities that the church cares for them and is willing to accommodate their needs. Simple things like taking communion to someone in a wheelchair can save them the difficulty of maneuvering their way to the front. Seating deaf people in the front will enable them to lip read if there is no Sign Language interpreter present. What about taking a chair off the end of a row so a wheelchair can park there? There is no reason why people in wheelchairs should have to sit at the back week after week. Are guide dogs welcome to sit in the service and are large print notices or hymn books available for visually impaired people? Are Services and Gatherings Punctual While there is a place for flexibility, the needs and routines of people with disabilities need to be considered. If a person or group are dropped and collected by a bus at certain times, it can be disappointing for them to miss the end of a sermon or the chance to socialize after a service. If there is a special celebration service or similar happening, find out if their timetable can be adjusted for that Sunday. It means a lot to people when their circumstances are considered. Going the Extra Mile for the Disabled Church is so much more than a service or two on Sunday. We have Bible studies and ladies meetings, family picnics and sports matches, movie nights and bonfires. As far as possible, all these events should be disabled-friendly. It is often as simple as choosing a suitable venue or arranging transport for people to get there. Where I live in New Zealand, there are a group of people in the church who have made a ministry out of fetching intellectually disabled folk for their morning service. What a wonderful thing to do and what an impact it is having on the beneficiaries. A Church will often attract Groups of Disabled People If a disabled person feels at home at a particular church, they will normally tell their friends. This means that a congregation may have a group of people with similar disabilities such as blindness or intellectual disabilities. This is a positive phenomenon but don't let it become an excuse to limit social interaction. We all need each other and can learn from and help each other. Make an effort to be a friend to the disabled. Where do Disabled Children fit in Kids can react to disabilities in two ways; they tease the person or they befriend them and become a helper. If there is a disabled child in the Sunday school class, it is often a good idea to let them talk about their problem. Understanding it will mean their peers are more likely to help them when needed and become genuine friends with them. If the child is too young to explain their condition, a parent or caregiver could give a simple talk and invite questions. Children love to ask questions but often hold back if they feel it is inappropriate. Allowing them to discuss disabilities can make them understanding and caring. A Story from the Bible I love the story from Mark 2:1-4 (NIV) A few days later, when Jesus again entered Capernaum, the people heard that he had come home. So many gathered that there was no room left, not even outside the door, and he preached the word to them. Some men came, bringing to him a paralytic, carried by four of them. Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus and, after digging through it, lowered the mat the paralyzed man was lying on. Isn't that a wonderful picture of accommodating the disabled? The paralytic had friends who were willing to make a plan to get him to Jesus. They went as far as making a hole through the roof! Can we do any less for those who come across our paths? There are millions of disabled people in the world and we brush shoulders with them every day. We see them in the supermarkets, walking the streets, on public transport and in doctor's waiting rooms. We also see them in our churches. Let's make an extra effort to reach out to the disabled and help them feel at home in our congregations. If renovations and changes are required or simply a greater sensitivity, let's step up to the mark and determine to make a difference. Continue reading
Posted Nov 15, 2009 at Take Root and Write
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Asperger's Syndrome is a form of autism where the person is often highly intelligent but struggles with communication and social interaction. The condition is not widely recognized and undiagnosed children and adults may end up in work and school situations that are uncomfortable for them. Asperger's Syndrome is often detected when a child starts preschool. He will generally interact better with his teacher than his peers and may display silly, loud, aggressive or socially withdrawn behavior. In some cases, Asperger's can be classed as a disability and appropriate help and resources can be sought. In order for us to help people with Asperger's Syndrome, it is important that we familiarize ourselves with the symptoms and typical behavior patterns. I have met several people with the condition over the last few years and understanding the implications has helped me to relate to them in a better manner. How does Asperger's Syndrome affect a Person Asperger's Syndrome is characterized by problems in three areas and the level of difficulty experienced can vary greatly from person to person. The areas are social communication, social interaction and social imagination. Asperger's Syndrome and Social Communication People with Asperger's Syndrome often speak in a strange manner, with a flat monotonous tone. They also tend to speak slowly. Eye contact, facial expression and body language are a mystery to them and when talking to another person, they struggle to read signs of boredom, impatience or frustration. This means they keep talking and may gain a reputation for being insensitive and boring. The child may appear cold and unemotional, but it is not deliberate. He does not think about others and cannot understand the social graces that keep society functioning. Aspergers's Syndrome and Social Interaction Obsessions are common in people with Asperger's Syndrome and become apparent from a young age. A child often develops an interest in a certain area and this becomes an obsession. Common obsessions include computers, gaming, electronics, coin collecting, transport, dinosaurs and household gadgets. They are passionate about their interests and like to seek out other people to talk to about them. The conversation is usually one-sided – more like a lecture where they talk about their knowledge and don't allow feedback. Interrupting another person is a common problem as the child does not understand the social signals that allow conversation to move from one to another. Children with Asperger's Syndrome express their feelings in unpredictable ways. Sometimes they may seem emotionless and other times they may display extreme emotion that is not appropriate to the situation. People with Asperger's Syndrome are often unaware of personal space and may stand too close when holding a conversation or queuing at a shop. Asperger's Syndrome and Social Imagination People with Asperger's Syndrome tend to take things very literally so communication needs to be simple and direct with no fancy figures of speech. The innuendos of language such as similes and metaphors, sarcasm and playful teasing are normally misunderstood. They have excellent thinking skills where things are concerned but are extremely poor at interpreting human relationships. As children, they do better with logical structured play as opposed to make-believe and "let's pretend". They also find it hard to generalize. If taught that they shouldn't hit a child at church, they do not automatically make the connection that they shouldn't hit a child in the mall. Bullying and Asperger's Syndrome People with Asperger's Syndrome often fall victim to bullies. Their differences invite ridicule and mocking which may escalate into violence. This is apparent in the work place as well as schools. It is important that the victims are helped often as they do not know how to verbalize what is happening to them. What other Problems are Common Loud noises, school bells, sirens, unexpected noises, shouting and laughing and general confusion can be upsetting to people with Asperger's Syndrome. They may become disoriented and angry and it is best to lead them to a quiet location and allow them to recover. Gross and fine motor skills are often underdeveloped, causing problems in sports and balance. Is it Possible to help a Person with Asperger's Syndrome There is specialized help available and it is possible to teach social skills. However, it is often a long slow process and may require parental intervention to repair damage when a child acts inappropriately. If friends and family are aware of the condition, they can also work with the child and implement the recommended therapies. Short stories can be useful in teaching social skills. Use one page visual aids that teach about listening to others and keeping quiet and still while they talk. Older children may enjoy a club that centers its focus on their interest – for example electronics or stamp collecting. It gives them a valid outlet to pursue their passion. What can I do to help If you already know or meet someone in the future with Asperger's Syndrome, take time to talk to them. While it may be rather one-sided and uncomfortable, it will help validate their worth. If they monopolize the conversation, don't be afraid to steer it in another direction and share your thoughts and feeling as well. You may not feel it has been a fulfilling encounter but persevere and don't give up. Every bit of positive interaction has value in the big picture of life. While Asperger's Syndrome imposes limitations, those who have the condition can lead productive and fulfilled lives. This is even more so when those around them understand the syndrome and can help them and guide them when they are struggling. Continue reading
Posted Nov 1, 2009 at Take Root and Write
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This is part two of my sister's story as told by my mother. You can read part one here. Has Leanne had medical problems? Leanne has had much illness but always comes through smiling and her recovery from operations is good as she does not anticipate pain. She had her thumbs straightened at a young age and later had her right patella removed. After this, she was still not walking well and it was suggested that a wedge of bone be removed. It meant 12 weeks in a plaster cast so we knew it would be a difficult time. Just before she was due to go back to the hospital for removal of the first cast, we went to a healing service and I wheeled her to the front for prayer. When we went to the hospital she came back with her leg wrapped in a crepe bandage. The bones had set well and there was no need for her to have a second plaster. What other surgeries has Leanne needed? Leanne suffered a twisted bowel in her 20's. The surgeon operated and led us to believe he had cut out a piece of the intestine. Meanwhile he had just straightened the offending area. After we moved to South Africa the problem flared up several times causing vomiting attacks. She was admitted to hospital and late one evening they operated and found she had a mega colon and gangrene had set in. She was in ICU for three weeks. The following morning the church was on its knees praying for healing as she was on the critical list. About eight weeks later she returned home with a colostomy which has since been closed. In 2007 she had a troublesome mole removed. It was found to be malignant. They operated a second time to make sure there was no further trace of cancer and to date she remains clear. She knows about the melanoma but cancer is never mentioned because she knows and understands what it can do to you. She has also had multiple surgeries to remove eyelashes that caused irritation and weeping eyes. Tell us about the stroke Leanne suffered Eight months after the melanoma episode, Leanne had a slight stroke. There was no warning and she fell down at work and was unconscious for a brief time. When she was helped up she could not speak, just made grunting sounds, and had no use of one of her legs. The leg came right almost immediately but regaining her speech took a little longer. She obviously understood what I said to her and I yelled to her to speak. This was only about an hour later but she answered and I knew then that she would recover. Today she talks more than ever and recently seems to have increased her general knowledge. She never ceases to amaze us with what she knows and understands. How do people react when seeing Leanne? Most of the time I don't worry about the way people stare at Leanne. I guess we are used to it but I personally find it a help to stare back at the person and they soon look away. Leanne is completely oblivious of people's attitudes. She is very sociable and makes friends from all walks of life without any problem. Those who meet her, never forget her. Tell us about Leanne and prayer Prayer has undoubtedly made a big difference in her life. From the day she was born she has been covered by prayer and while she may look different to the average man in the street, she is a powerhouse of information and quotes scriptures and understands the Word. She spends several hours a day praying for the needs of people. She has her own unique way of praying – she writes her prayers down, mainly just the first letter of each word. I sometimes pick up a page of letters D L T U etc and she can read it to me fluently. She knows what she has written and so does the Lord! She gets through loads of paper! If a person is ill, she expects good results when she prays and soon moves on to the next request. She constantly quotes Jeremiah 3:33 – Call on my Name and I will answer. How has God used Leanne to touch people's lives? God uses her in His way and there was one very special morning I shall never forget. During the Worship we sang her favorite song - Hold Me Close. She sang out lustily and then the band quietened down and the worship leader and the congregation were singing softly. This did not apply to Leanne – she was going to sing out because she loves the words so much and she does the actions. Suddenly I realized I could hear almost nothing except Leanne. I looked around and several people were watching her. At least two had their eyes closed and their hands stretched to the Lord. Some were dabbing their eyes. Leanne did virtually the whole song on her own with just a little help from the worship leader and band and then there was prayer and we sat down. People were touching her, thanking her and she was all smiles. Again at the end of the service, people came to hug her and thank her just for being her. Truly it is probably the greatest time when I have felt the presence of God. I thank Him for sending her to us; she has been and is a real blessing. Continue reading
Posted Sep 25, 2009 at Take Root and Write
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Leanne's story is one very close to my heart – she is my sister. She has lived with my parents since she was born and I asked my mom to share what it's like to care for a disabled person. Tell us about Leanne's birth Leanne was born December 29, 1966, by Caesarean section and weighed 6 pounds, 3 ounces. This was in Zimbabwe. She was tiny but wide awake, always wanting her bottle and appeared fine apart from her thumbs which were turned outwards. From day one she seemed prone to vomiting and consequently did not gain weight. At six weeks I had to take her to a specialist for a check up and it was when he measured her head that I began to wonder about retardation. What was Leanne's diagnosis? I found that the doctors had advised against telling me until I was stronger - and then no one uttered a word to me. Her condition is known as Rubenstein-Taybi syndrome and it can range from very severe to very mild. Some children are unable to speak; others have no feeling - they could put their hands in fire and feel nothing. Rather than feeling sad when I was told, I was challenged, particularly when the specialist said she would be "totally ineducable". Years later I found out that the Prayer Healing Group at my Church had prayed for her weekly, knowing there was a problem, but not knowing any details. This continued over some years. How does this affect Leanne? Leanne is a moderate case with an IQ in the 60s. She talks well and reads with comprehension. Her writing is poor but her spelling outstanding. Muscle tone is her greatest problem. Her thumbs were broken and straightened when she was very small and while not perfect, they look better than they were. Did Leanne go to school? When she was three years old it was suggested that she go to a school for the mentally disabled. A bus picked her up from home and returned her in the afternoon. At that time Leanne was not toilet trained and could not walk. She seemed reasonably happy there but as her mother, I was not. She had already made it clear that she was going to be extremely difficult to feed and hated meat and vegetables. The school insisted on forcing it down her and she often vomited it back, either there or later at home. After a year or two, a teacher who knew my father, said Leanne was in the wrong place and that I should move her. That was all I needed to hear! How did you find the right place for Leanne? After many inquiries she was accepted into a small play group. Although she was at least two years older than most of the children, she was small and did not look out of place. From there she progressed to a nursery school and then the school psychologist tested her and put her in a normal school for two years. From there she went to a private school and coped well up to the end of the fourth year of schooling. She was not able to do sport and did not walk well but held her own. Then she moved to a large primary school which had two special classes for slow learners. She remained there until she was 13. From here, she moved to a special school where she spent the next five years. She learned well and enjoyed the school. At 18 she had to return to the school she originally went to at age three, but this time in the adult section. There was little work to do, most of which Leanne could not manage. For the next three years she broke foam for cushions and picked up a lot of bad language. At that stage we moved to South Africa and in her new home town she joined a sheltered workshop where she worked for the next 20 years. She was extremely happy there with work she could manage and made lots of friends. What challenges have you faced living with Leanne? As far as the challenge of living with a disabled person goes, I guess it varies from extremely difficult to a situation one can cope with. We are fortunate that Leanne is not really difficult to care for although she has limitations. She is fully dependent on us as parents to care for her. If hungry she can help herself to a drink from the fridge, or a piece of cake, but cannot prepare food as such. Her poor muscle control means she needs to have someone holding her hand when walking (not at home) especially on uneven ground. She needs help to get into a bath or shower and cannot fasten her bra. Otherwise she dresses and undresses without help. Of course she has to be considered in every situation – where we go – what we do - but we have grown used to it and accept that there are times when we are unable to do what we would like to do because of Leanne. I cannot say looking after her is frustrating except on the odd occasion when she wakes in the night if she is ill. At my age I am just too old to get up at night and change sheets etc - yet if it happens, I do it as God gives me the strength. Continue reading
Posted Sep 25, 2009 at Take Root and Write
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Abigail Brauteseth was born with spina bifida and hydrocephaly. This is part two of her inspiring story. You can read part one here. What progress has Abby made over the last few years? Abby has progressed in many areas and through the grace of God, has pushed through many limitations. She has developed from dragging herself to crawling properly at just over a year of age. At two years she started to pull herself up, later using a granny walker followed by crutches. Emotionally she has developed into a courageous little girl. My husband often tells her that she is the bravest girl. She has had seven operations, and many days of illness, mostly from urinary infections prior to a bladder operation when she was two years old. What challenges – physical and medical does she face on a daily basis? Nerve damage has caused Abby to be paralyzed in her feet and ankles, and certain muscles in the legs and buttock have less nerve supply. As a result her right hip is dislocated. She walks with a gait, relying on her crutches. She longs to be able to balance freely and run and dance like her friends. Despite this God has given her such tenacity that she never stops trying. The nerve damage has also affected her bladder which causes incomplete emptying and incontinence. Without intervention, this can lead to kidney damage. Abigail also has a challenge with her bowel, and needs help to prevent constipation and blockage. Abigail has a slight squint and is longsighted in both eyes, so she wears glasses. Describe an average day in Abby's life As soon as Abby wakes in the morning I need to be ready to get her toilet needs out the way. This involves catheterisation and a bowel washout. We always try to keep it fun. She has to sit on the toilet for about ten minutes, so she gets to read or hold her rabbit, or budgies. She helps dress herself and needs to put on her ankle foot orthotic (Afo's) splints, which give the support and protection to her feet for walking. She is at a lovely school who have embraced her and her disabilities. They feel that it is good for the other girls to grow in their ability to care for others. She attends occupational therapy once a week at school. I fetch Abby at midday and again catheterise her. She gets catheterised 4/5 times a day and when older, will do it herself. Abby goes to physiotherapy once a week as it is essential for her to learn to use each mu scle to the full, and compensate with other muscles. She is excited to be starting swimming lessons soon as she is passionate about the water. She takes medicines daily to prevent constipation and urinary infections. Other than these extra bits and bobs, her days are filled with usual five-year old fun, loads of laughter, naughty moments and memories in the making. Tell us about Abby's personality – what does she enjoy doing? Abigail has a delightful personality and endears herself to all she meets. She is cheerful, determined and talkative. God added a huge dose of tenacity to her, which often comes across as stubbornness, but has been essential for her progress. Abby loves people, animals, music and swimming. Have people ever said hurtful or insensitive things about Abby? Nothing that stands out - I don't hold onto the negative. People having inquiring minds and I don't interpret that as intentional hurt. Children stare and ask questions, but it is an opportunity to help them to understand more and care for the disabled. There have been times when answering questions and repeating her struggles cause sadness as they highlight the realities she faces. What advice would you give parents who have a baby with a disability? Completely surrender to Jesus and Father God! Even trying to draw strength from a spouse or other family can not suffice. Don't try to walk the road alone, this is a time you need friends and need to be vulnerable. Being part of a close church family has been incredible. This is a journey that when your faith is low, you need others to hold up your arms with their faith. Never forget that although your baby may be different to others, he or she is a gift from God. Keep encouraging yourself in God, focusing on the good and not being consumed with the difficulties. Take one day at a time. Always keep Christ in the picture, His presence, peace and sovereign power, while taking on each day's medical, physical and emotional reality. I have chosen to live my life for Jesus, not to live for the day I see Abby healed. How has Abby's story touched lives? Many people are drawn by her charisma and marvel at her courage and cheerful determination. Countless people have commented over the years at how Abigail has encouraged them to persevere. One Lady's comment when facing surgery was, "I just kept thinking of Abby and that if she could go through it then so could I." Others have seen her determination as she faces many challenges, and realize their own issues are not that bad. She has helped soften many hearts towards those with disabilities. People look at Abby and see the outworking of a loving God in her life, in spite of her disabilities. This is a story where God must get all the glory. Only God's grace has been sufficient for us, and for Abigail. He has strengthened us, and enabled us when we have needed it most. Continue reading
Posted Sep 13, 2009 at Take Root and Write
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Terry and Claire Brauteseth lead a church in South Africa which I was part of for several years. Their third child was born in 2004 with Spina Bifida and hydrocephalus. This is part one of their story of heartache and triumph. How and when did you discover that Abby had spina bifida? It was two days before Christmas 2003 and I was 25 weeks into my pregnancy. Joshua (5) and Hannah (4) joined us with great anticipation, wanting to see their new baby. The technician found her way through the gel on my bump and our baby came into view. We saw her face change and fear began to rise in the room. She had discovered our baby had hydrocephalus. As a registered nurse I had a fair understanding what that meant and the tears began. She rushed off to call the specialist obstetrician to confirm the diagnosis. Terry squeezed my hand and did not let go. Josh and Hannah were given an apple each and perched on chairs with puzzled faces.We were told our baby had a narrow passageway in the brain which was causing fluid to build up. If left uncorrected, it would cause continual enlargement of the head, and inevitable damage to brain tissue. A second scan revealed a small opening in our baby's spine which was allowing cerebrospinal fluid and nerve tissue to protrude from the spinal cord. Was abortion offered as an option? The doctor rushed off to photocopy some of his medical notes on these abnormalities and gave a brief explanation of what it meant. We were told to go home, chat to our GP and consider termination. We had a week to decide as I was so far in my pregnancy. "Consider your two healthy children." he said. Can you share some of the emotions you went through in the weeks after you found out? When we arrived home after the scan, the shock set in. Terry collapsed on the floor and sobbed; the loudest mournful cry I've ever heard. The children didn't know what to do. Hannah ran around with tissues and Joshua laughed nervously and then burst out crying. As I look back, I feel very ashamed at the emotions I felt. Amidst the shock, grief and fear was rejection. I could only picture the full extent of her deformities - a big head, brain damage, paralyzed legs. As a trained nurse, it almost felt right to follow doctor's orders and "solve" the problem. My thoughts were selfish, fearful and frightening. As I cried out to God, I realized His love never stopped and He never turned away from me, despite my selfishness. A visit from a friend who had a similar situation, really brought encouragement and I realized my baby needed me to love her, pray for her, protect her and fight for her. How did your family/friends/church community react to the news? During this time our family, friends and church community were amazing and loved us in so many ways. We really were comforted, strengthened and encouraged by each letter, card, meal, gift, phone call and listening ear. News like this affects all who are close to you. People often feel uncomfortable and want to offer a solution to ease your pain, but we learned that each response was offered with love. We have grown stronger as a family and a church through this time. Tell us about Abby's birth. Abigail Jesse was born on the March 30, 2004, with a team of specialists all around. In the moments before her birth, I felt sick. What would she look like? Would she be paralyzed? When the doctor exclaimed, "She's kicking!" I cried tears of relief and joy as she was rushed off to the ICU to be cared for. The pouch of nerves on her back was intact which was a miracle, and now needed to be covered and preserved for surgery the next morning. Abby was brought back into the theater for a brief moment so that I could meet her. When we look back at photos of her birth, we're overwhelmed and wonder how we coped. At the time, God's grace and mercy sustained our every thought and emotion. How did you cope for the first few months after Abby was born? I just remember a blur of activities. As a third child, Abby had to share the limelight and attention with our other two busy-bodies. My husband also needed to slot back into leading the church. At the same time, Abigail needed to see many doctors; these were moments when we had to face reality. They were exhausting as we had to deal with our grief over her disabilities. How did you find God in the middle of all the heartache and turmoil? The amazing thing about God is you don't have to find Him, He's right there in the midst of hard times. You have to keep surrendering your circumstance daily and allow Him to comfort you. It is also so important to trust in His sovereignty. When a loving God answers "not now" or "no", it can be a refining process of your character. I found it best to trust Him and cling to Him, although learning to live with unanswered questions is not easy. My heart's cry in those early days was, "Lord please don't let my pain be wasted - be glorified in it!" God has been my safe place, my refuge and He brings peace that transcends my futile understanding. Continue reading
Posted Aug 30, 2009 at Take Root and Write
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All parents dream of raising the perfect child. When their baby is born, they count the fingers and toes and wait anxiously to see if there are any serious problems. When the doctor pronounces the child normal, they relax and begin to enjoy parenthood. On the other end of the scale, many parents are presented with a child that has obvious disabilities and medical issues. Understanding how this diagnosis affects a family can enable friends and extended family to support them in the best way possible. Many Children are Born Disabled I did some research and came up with the following figures for some of the more common causes of disability at birth. In the United States, approximately 5000 babies a year are born with Down Syndrome. Another 10,000 are born with cerebral palsy and 1500 with Spina Bifida. That's 16,500 families that are affected and of course there are thousands more born with other disabling conditions. Accidents and Disease also Cause Disability Some children are born normal and later become disabled due to accidents or disease. Head traumas are a common cause of disability and are often caused by falling off a horse or bicycle or as the result of a motor vehicle accident. Near drownings can also cause brain damage resulting in physical and mental problems. In some ways, it is harder to have a normal child who becomes disabled later in life. Initial Reactions Whether the condition is detected before or after birth, the reaction is normally a mixture of shock, disbelief, pain and self incrimination. Parents question their life style and health and many questions are asked. "What can I expect? How badly affected will the child be? Will he be able to go to school? Will I be able to love her? What will his life span be? What will her quality of life be like? Will he require medication? What could I have done to prevent this?" These questions are normal and need to be explored. The answers will be formative in learning to live with a disabled child. How can Friends and Extended Family Help If you know people who have a disabled child, don't be afraid to get involved. Genuine concern and friendship are the best thing you can offer. Ask questions and learn how to care for the child. Parents are often exhausted by the constant care routines but reluctant to leave the child with people who don't understand his needs. Spend time with them and offer to assist them with his daily care from time to time. Once they see you handling him competently, in a loving manner, they will feel more freedom to go out for a day without worrying. Mothers Bear the Burden In most situations, the mother is the main caregiver. She often has to give up her job and may find herself trapped at home, her life centered around the disabled child. This can result in her feeling resentful, angry and guilty, or she may pour her whole life into the child, so neglecting others around her. Understandably, both of these reactions are unhealthy. There are support groups and associations that organize meetings and outings for parents and disabled children and these can be a source of great encouragement and hope. Fathers try to Fix Things Men are natural fixers. They try and repair things and a disabled child can leave them feeling helpless and frustrated. The best thing they can do is work on helping the child reach his full potential. This may be in the form of building special play equipment or adapting the house to accommodate wheelchairs etc. It is also important that they connect with the child and spend time with him. Siblings of Disabled Children I recently read a Jodi Picoult novel entitled Handle with Care. This tells the story of a child called Willow, born with osteogenesis imperfecta – brittle bone disease. Her elder sister, Amelia, has an on-off, love-hate relationship with her. The parents' attention is focused on Willow and Amelia eventually develops bulimia and starts cutting herself. That is an extreme example but siblings of disabled children often feel neglected. The disabled child is the center of much attention and vast chunks of time are swallowed up by daily care, doctor's visits and various types of therapy. The Disabled Child If the disability is purely physical, the child will eventually become aware of the extra care he needs. This can be a healthy thing, resulting in him wanting to become as independent as possible. On the other hand, he may have been spoiled and will continue to demand excessive amounts of attention. Family life is always a melting pot of personality, age, gender and preferences. A disabled child, like any other, will have to learn to fit into their family. Dealing with Guilt All parties are subject to feelings of guilt. Guilt that they brought a disabled child into the world, guilt that they don't love a brother wholeheartedly, guilt for being a burden on their families. God's amazing grace can cover over all these feelings and problems. Families that work together and acknowledge God often end up being an inspiration to other families with disabled children. Families with a disabled child need love and support from those around them. Being willing to learn and understand can mean the world to them. Continue reading
Posted Aug 16, 2009 at Take Root and Write
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Over the last few decades, the international emphasis on caring for the disabled has moved in a new direction. Instead of forcing people to live in impersonal institutions, many are now offered the option of assisted living. This takes the form of specially adapted homes with caregivers who supervise and assist the residents 24/7. The idea is to provide a safe comfortable environment that feels like a family home. This is the case in Christchurch, New Zealand, where I live, and I recently had the opportunity to talk to some people who are involved in assisting with this program. I hope their stories will inspire you to do something in your area. Independence for the Disabled Disabled people look for assisted living for a number of reasons. Some desire a measure of independence. Others can no longer rely on aged parents for care or family members may ask them to move out. It can be a positive move as the residents in the homes tend to bond together and form their own family unit. Home Environment Some of the homes in the Christchurch area can house six residents. They are specially adapted with big bathrooms, rails and wheelchair ramps and each person has their own bedroom, individually decorated. Just as in a normal family, there is a diverse mix of age, ability and health issues. From this chaos, friendships form and routines develop making the home feel like home. The Enrich Chaplaincy This is a Christchurch initiative that provides spiritual care to the residents in these homes. Their vision is to encourage respect, understanding, belonging to community, contact with family and friends and connection with God in a way that is relevant and meaningful. As part of this, they have involved volunteers from several churches in the area. Home Visitors These volunteers make themselves available to visit and simply be a friend. I spoke to Gavin Kingsley and Lynette Nelson about their involvement. Gavin's motivation was a disabled uncle who lived in Blenheim, New Zealand. "I didn't get to see him very often so thought I would like to do something locally." He now takes an intellectually disabled friend to church every week. Lynette volunteered because the idea appealed to her and was "something she could do". She says she enjoys visiting her friends and they talk about what they've been doing, what's for dinner that night and often show photos around. Volunteers visit the home on any basis they find convenient, either individually or in pairs, usually phoning ahead to co-ordinate with the staff. During the visit, team members may play games, share magazines and photos or just talk to the residents. A visit from pets is always well received too. Social Interaction Welcomed For some volunteers, it was a new experience to interact with people with intellectual disabilities and they were understandably apprehensive. However, actual visits have shown the residents to be friendly and welcoming and the volunteers soon relaxed and enjoyed what they were doing. Entertainment Birthdays are special occasions and the residents of the homes look forward to them with great anticipation. "We remember them and visit with cards and gifts." says Lynette. The volunteers also ensure that these folk are invited to participate in church and community activities. These have included fish and chip nights, sing-alongs and barbecues. Gavin gave the following report back on a recent barbecue. "Entertainment was provided in the form of singing, with a variety of songs being performed. Face painting was available throughout the event, and many people took advantage of this to decorate both cheeks, both arms and both legs. Finally Polly the Performing Pooch came and gave a performance, although the dog was sometimes distracted by the many delicious barbecue smells in the vicinity." Two balls are planned for late 2009 and these are formal events where the residents dress up and those who are able to, dance. Alpha Course for the Intellectually Disabled The world's first Alpha course for people with intellectual disabilities was run in Christchurch with a variety of volunteers from various churches and denominations. The report back on the course was extremely positive: "Each evening would start by singing a song of greeting and then Jim (Jesus In Me), a cheeky puppet, would review last week's session with Sharon, his multi-talented puppeteer." Other props included the use of drama and a DVD Bible. After the evening's topic was covered, the participants would break into groups with the volunteers to reinforce the learning and create some relevant artwork. Then the groups would return for some worship songs and finally a lavish supper. "It was a joy to work with the participants who were always very direct and unabashed. They would give themselves fully to whatever activity was required, whether coloring in, singing or eating." In the words of one volunteer, "It is easy to give when they are giving so much back in return." The disabled can become an isolated sector of society – a group longing for friendship and recognition. People who volunteer to visit them, often end up making genuine friendships and seeing a new side to disabled. Even if you cannot do it on an ongoing basis, why not set aside a day every few months to volunteer at a home near you. The rewards will far outweigh the effort and time expended. Continue reading
Posted Aug 2, 2009 at Take Root and Write
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Why do people work? The main reason is to produce an income that provides for daily needs. Work is part of life and whether paid or unpaid, the majority of us work. Because we generally spend many hours working, our job tends to define who we are. When strangers meet, the first question is normally, "What do you do for a living?" Our answer can reveal volumes of information. Are we happy in what we do? Are we proud of our career choice? Am I nursing because I have a compassionate heart? Do I sell insurance and hate every minute of it? What about Work for the Disabled Because I'm aware of the disabled, I notice them when I'm out and about and have even spoken to some about their jobs and the way they feel about them. In some ways their jobs are even more important as their employment shouts a message. "I have value. I am capable. Someone believed in me enough to employ me." While I can't solve the problems of employment or lack of, I can share the stories of some people I have met over the years and hope they will give you fresh insight into the world of the Disabled. Leanne's Story Leanne is my sister. Born with Rubinstein-Taybi Syndrome, she has an IQ of around 60 and multiple physical disabilities. These include poor balance and knee problems that affect her ability to walk. Leanne was born with bent thumbs that needed to be surgically straightened. This left her with stiff thumbs with no joint in them. Hold your thumb straight and try and write, cut a steak or pick up beads and you will see how restrictive the lack of movement is. In spite of this, Leanne has worked at a sheltered workshop for years. Many cities have these types of facilities where firms contract out simple tasks like sorting, counting and packing. The pay is minimal but Leanne is surrounded by friends and has the joy of accomplishing something. Her jobs have included sorting electrical components, counting out screws to be bagged and counting chocolate bars to be packed into boxes. She loves her work and talks about it to anyone who will listen. Opportunities for the Deaf I recently had the chance to talk to a deaf man through a friend who is proficient in sign language. It was the first direct encounter I'd had with a deaf person and I found it deeply interesting. He said that as recently as 20 years ago, there was a belief that deaf people could only manage to work in trades. He was trained as a carpenter and employed by a local firm. Businesses were happy to hire deaf people as they were generally good workers and loyal to their company. He said he was fairly isolated as none of his work mates knew sign language and as a result, became depressed. In spite of this, one of them persisted in his attempts to communicate and be a friend and eventually got him to go along to church where he became a Christian. He has held onto his faith over the years and now works as a counselor to the deaf. Thomas the Security Guard I met Thomas years ago in South Africa. He was employed at a small shopping center where I owned a toy shop. I'm not sure what his job description was but he did a bit of everything –sweeping the sidewalks, carrying merchandise for store owners and acting as a security guard. He was simple and slow, built like a mountain and had a soft tender heart. He was passionate about his job and it was a joy to see his smiling face every morning. The Girl at McDonalds I travel frequently and have met this girl several times - she works in a McDonald's outlet about 80 minute's drive from where I live. It's easy to tell she was born with Down Syndrome by her facial features. We've had several conversations and she bubbles with enthusiasm. She's told me she lives with friends in a supervised home environment. She loves music and on one occasion, mentioned she was flying up to Auckland to see a concert. It's obvious she loves her job and takes her cleaning duties very seriously. It's an inspiration to talk with her and I've had a few laughs when her supervisor shoos her away from customers and back to work. The Crutch Labeler I haven't actually met the crutch labeler but he works with a friend of mine at a medical center. He describes him as having a strange manner of speech, good at his job and a great organizer. In spite of his mental limitations, he has arranged a trip to Australia for himself and some friends. A staff member says he has done this before - booking everything and then acting as an unofficial tour guide. Someone, somewhere made a decision to offer him a job, and with it, the chance to make a living so he can do things like this. Giving Opportunities In many ways, life is easier for disabled people now than a few decades ago. Much of this is due to better understanding and human right's organizations, but at the end of the day, it is individuals that offer employment to disabled people. Next time you see a disabled person doing a good job, thank them and mention them to their supervisor or business owner. It will mean a great deal to both of them. Continue reading
Posted Jul 12, 2009 at Take Root and Write
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I recently spent the night in our local emergency room. At lunch time of the previous day, I noticed a few itchy spots on my chest but dismissed them as a mild skin irritation. By evening they had spread under my arms and down onto my legs. The itch was annoying, but I thought it would pass so went to bed as usual. I woke up at midnight and realized something was seriously wrong. A look in the mirror revealed my eyes and lips were swollen and the spots had changed into painful welts. I woke my husband up and shared my concerns that I was having an allergic reaction and heading towards anaphylactic shock. To condense the story, he bundled me off to the ER and I was seen immediately. The doctor diagnosed an acute allergic reaction (we still don't know what triggered it) and started me on a drip loaded with steroids and antihistamines. My dear husband went home to bed and I was left on my own, linked to oxygen and heart monitors and seriously unhappy with how my night had turned out. You may be asking what this has to do with mental disability ... well they warned me the drugs would make me drowsy but didn't say they would also slow my reactions. I lay there for over three hours, struggling to make sense of what was happening around me and battling to communicate. I recall asking a few questions and thinking that my voice sounded odd – slow and almost slurred. I knew what I wanted to say but I couldn't express it. I felt stupid, slow, and embarrassed. The staff knew I was somewhat out of it and talked around me and over me. When they addressed me, they spoke slowly and clearly so I would understand. When the drugs wore off, the hives were gone and my brain and voice slowly returned to normal. I don't believe any experience in life is wasted and have seen the truth of this scripture many times over - "We know that in all things God works for the good of those who love him, who have been called according to his purpose" (Romans 8:28 NIV). With this in mind, I asked God what I could learn through my visit to the ER. The answer was unexpected: Some people with mental disabilities feel like this every day of their lives. For the first time in my life, I had personal experience of how it feels to struggle with thought processes and speech. I have a sister with mental disabilities and she sometimes gets frustrated when trying to communicate. She waves her hands around and repeats a word until she manages to say what she's thinking. I never knew how frustrating this could be and would sometimes say the word for her or finish the sentence. Mental disability comes in many forms and is defined as a generalized disorder with below average cognitive function and deficits in two or more adaptive behaviors. Adaptive behaviors include areas such as daily living skills, communication skills, and social skills. Cognitive strength is normally measured by an IQ test. People with profound retardation score below 20, severe retardation measures out at 20-34 and moderate retardation at 35-49. People who score 50-69 are described as being mildly mentally retarded and 70-79 is the borderline mark for intellectual function. Many people in the upper ranges of these groupings are aware that they have mental disabilities. Some may have been born this way and others may have lost ability due to brain injury or disease. The important thing is that we understand their frustrations. They have thoughts and feelings that they want to share but sometimes feel lost or overlooked in a group situation. I have a friend like this and have noticed she struggles in a crowd but manages better if we have a one-on-one conversation. We often go out for coffee and she has shared some of her hurts at the way people treat her ... even in church. She has limitations but is aware of them and lives an incredibly positive life. I so wish that people would take time to listen to her and realize what a wonderful person she is. There is an attitude in today's world that people who are slow of mind and slow in speech are less valuable than those who are "normal" and those gifted with genius-level IQs. They tend to be mocked and made fun of or treated as stupid. I observed this throughout my childhood as people would stare at my sister as we walked past. They still do it today but it bothers me far less now ... and for different reasons. I see her worth as a person in ways I never did as a youngster. I have an aversion to hospitals and needles but when I look back on my visit to the ER, I'm grateful it happened. It wasn't pleasant but God granted me a new avenue of understanding as well as a new appreciation for the ability to communicate. My prayer is that the experience will remain part of my life and cause me to be more sensitive to those around me. Continue reading
Posted Jun 27, 2009 at Take Root and Write
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Until recently, I hadn't given much thought to how deaf people function in a hearing society. That changed a few weeks ago when I had the opportunity to interview a deaf person. This was in preparation for a special service we were holding to celebrate New Zealand Sign Language week. There are several people in our church who are involved with the deaf community. One is a qualified interpreter and the others have a passion for interacting with the deaf. Subsequent to the service, I had the opportunity to receive four hours of instruction in sign language. While it was just a basic overview, I feel confident that I could now introduce myself to a deaf person, spell out my name and ask a few simple questions. Deaf Culture Deaf people, unlike members of other groups, have their own language, social clubs, athletic leagues, theater companies, universities, periodicals, TV programs and international Olympics. Unless the parents are deaf, this culture is not passed on through them but comes formally and informally through schools for the deaf. Deaf people often ask each other which school they went to as this conveys information about their influences and cultural roots. Is deafness a disability? Many deaf people do not consider themselves to be disabled - they simply cannot hear. In fact, most of them are content as they are and live productive fulfilled lives. Although they live in a hearing world, they have come up with creative ways to manage the limitations imposed by deafness. Flashing lights warn of doorbells and texting has made telephone communication easier. Their problems seem to arise when they have to interact with the hearing sector of society. Medical experts often treat deafness as a pathology that needs to be cured and this attitude is not well received by the Deaf Community. I was surprised to hear that cochlear implants are often regarded as denigrating to the group – like straightening hair or lightening skin. They prefer to be accepted as they are and not as people with a problem that needs fixing. Defining Sign Language Sign language differs from country to country but is always a highly expressive form of communication. It is a visual language and many of the signs have relevance to the object they are describing. For example the signs for some animals relate to typical actions of that animal. If you watch people sign, you can see the playful quality of the language as they improvise and add humor, imagination and personality. Sign language is not just hand movements but involves the whole body and face and when used in worship, can offer amazing depths of expression. I was playing the piano on the day we held our service for the deaf, and it was an awesome experience to see them signing their worship to God. There is an example of how expressive sign language can be on this snippet from Sister Act. Sign language is the first language for most deaf people and English is a second language. Contrary to popular belief, sign is a comprehensive form of communication and can express anything a written language can. Where do interpreters fit in? Deaf people are the only group in the world forced to rely on interpreters who live outside of their culture. The ideal interpreting situation is in one direction only – from a second or third language into the mother tongue. This is not the case with sign language where the hearing person is interpreting from English into sign or second language. Pitfalls include inaccurate interpretation which can portray a deaf person as slow or dull. An interpreter must never edit or distort the meaning of what a person is signing. Deaf Etiquette Because of the difference in culture, deaf etiquette is different to hearing etiquette. These are some things to avoid when communicating with a deaf person: chewing gum, throwing objects at a person to get their attention and not looking at a person who is trying to tell you something. It is also rude to break eye contact in the middle of a conversation, watch other people's conversations and hint at a criticism rather than coming out with it. In signing, it is not rude to point and stare at faces. If dining with a deaf person, they will usually point to the menu to communicate with the waiter. Don't try and take over from them. They've probably been doing this for years without your help. How does it feel to be deaf in a hearing world? Hearing people often glimpse fragments of a deaf person's life in a shop, church or waiting room. They see them in isolation, not in the context of the deaf community, and so get a distorted impression of them. In a gathering of hearing people, deaf people often feel reluctant and uncertain. The language and culture are not native to them and they fear being viewed as ignorant. Frustration is another common feeling which arises when they want to state an opinion but can't make themselves understood. To imagine how this feels, picture yourself at a meeting of deaf people. You don't understand sign language and won't be able to fit in or communicate. No one talks to you and you feel like an outsider. If all else fails, it is possible to communicate with a deaf person by writing. The important thing is to remember they are people with emotions and feelings just like the rest of us. They would rather you attempt a conversation than pretend they are not there. Continue reading
Posted Jun 14, 2009 at Take Root and Write