CLSF News |
Vol 16 Issue 1, February 2007 |
Table of Contents
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Think what a better world it would be if we all, the whole world, had cookies and milk about three o'clock every afternoon and then lay down on our blankets for a nap. ~Barbara Jordan
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Source: http://www.sensoryint.com/faq.html
Sensory Integration International - The Ayres Clinic
What are some signs of Sensory Integrative Dysfunction?
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Overly sensitive to touch, movement, sights, or sounds |
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Under reactive to touch, movement, sights, or sounds |
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Easily distracted |
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Social and/or emotional problems |
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Activity level that is unusually high or unusually low |
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Physical clumsiness or apparent carelessness Impulsive, lacking in self control |
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Difficulty making transitions from one situation to another |
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Inability to unwind or calm self |
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Poor self concept |
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Delays in speech, language, or motor skills |
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Delays in academic achievement |
What is sensory integration?
The senses work together. Each sense works with the others to form a composite picture of who we are physically, where we are, and what is going on around us. Sensory integration is the critical function of the brain that is responsible for producing this composite picture. It is the organization of sensory information for on-going use.
For most of us, effective sensory integration occurs automatically, unconsciously, without effort. For some of us, the process is inefficient, demanding effort and attention with no guarantee of accuracy. When this occurs, the goals we strive for are not easily attained.
Sensory experiences include touch, movement, body awareness, sight, sound, and the pull of gravity. The process of the brain organizing and interpreting this information is called sensory integration. Sensory integration provides a crucial foundation for later, more complex learning and behavior.
For most children, sensory integration develops in the course of ordinary childhood activities. Motor planning ability is a natural outcome of the process, as is the ability to adapt to incoming sensations. But for some children, sensory integration does not develop as efficiently as it should. When the process is disordered, a number of problems in learning, development, or behavior may become evident.
The concept of sensory integration comes from a body of work developed by A. Jean Ayres, PhD, OTR. As an occupational therapist, Dr. Ayres was interested in the way in which sensory processing and motor planning disorders interfere with daily life function and learning. This theory has been developed and refined by the research of Dr. Ayres, as well as other occupational and physical therapists. In addition, literature from the fields of neuropsychology, neurology, physiology, child development, and psychology has contributed to theory development and intervention strategies.
Who has problems with sensory integration?
You may know a child who, although bright, has difficulty using a pencil, playing with toys, or doing self-care tasks, like dressing. Perhaps you have seen a child so fearful of movement that ordinary swings, slides, or jungle gyms generate fear and insecurity. Or maybe you have observed a child whose problems lie at the opposite extreme uninhibited and overly active, often falling and running headlong into dangerous situations. In each of these cases, a sensory integrative problem may be an underlying factor. Its far-reaching effects can interfere with academic learning, social skills, even self esteem.
Research clearly identifies sensory integrative problems in children with developmental or learning difficulties. Independent studies show that a sensory integrative dysfunction can be found in up to 70% of children who are considered learning disabled by schools.
Sensory integrative problems are not confined to children with learning disabilities, however. They transact all age groups as well as all intellectual levels and socioeconomic groups. Consider the following human problems:
Premature birth - More and more premature infants survive today; they enter the world with fragile, easily over stimulated nervous systems and multiple medical complications. Parents need to learn how to give their premature infant the sensory nourishment their child requires for optimal development, and how to avoid detrimental over stimulation.
Autism and other developmental disorders - Although autism is rare, it occurs more often than blindness. Severe difficulty with sensory processing is a hallmark of the disorder. Autistic children seek out unusual quantities of certain types of sensations and are extremely hypersensitive to other types. Similar traits are often seen in other children with developmental disorders. Improving sensory processing leads these children to more productive contacts with people and environments.
Learning Disabilities - As many as 30% of school-aged children are estimated to have learning disabilities. Research indicates that a majority of these children, although normal in intelligence, are likely to have sensory integrative problems. These children are also more likely than their peers to have had a premature birth, early developmental problems, and poor motor coordination. Early intervention can improve sensory integration in these children, minimizing the possibility of school failure before it occurs.
Delinquency and substance abuse - Numerous studies indicate that learning disabled children are at risk for later delinquency, criminality, alcoholism, and drug abuse. Repeated failure in school opens the door to self-destructive activities. By interrupting the vicious cycle of failure, intervention to help children with sensory integration and learning problems may also prevent serious social problems later in life.
Stress related disorders - Sensory integrative difficulties that appear in childhood often are not outgrown. When sensory inefficiencies in adults do not allow them to perform optimally in the workplace, stress can build up. Additionally, there is mounting evidence that stress in parents can lead to child abuse, violence in the home, and problems that pass from generation to generation. Recognition of the sensory processing component of these problems contributes an important element in aiding people to achieve greater satisfaction in their home life and competence in their work.
Brain injury - Trauma to the brain from accidents and strokes can have profound effects on sensory functioning. People who suffer from these effects deserve treatment that will lead to the best possible recovery. In order for this to occur, their sensory deficits must be addressed by the health professionals who serve them.
What steps can be taken?
If a child is suspected of having a sensory integrative disorder, an evaluation can be conducted by a qualified occupational or physical therapist. Evaluation usually consists of both standardized testing and structured observations of responses to sensory stimulation, posture, balance, coordination and eye movements. After carefully analyzing test results and other assessment data along with information from other professionals and parents, the therapist will make recommendations regarding appropriate treatment.
If therapy is recommended, the child will be guided through activities that challenge his or her ability to respond appropriately to sensory input by making a successful, organized response. Standards are available from Sensory Integration International.
Training of specific skills is not usually the focus of this kind of therapy. Adaptive physical education, movement education and gymnastics are examples of services that typically focus on specific motor skills training. Such services are important, but they are not the same as therapy using a sensory integrative approach.
One important aspect of therapy that uses a sensory integrative approach is that the motivation of the child plays a crucial role in the selection of the activities. Most children tend to seek out activities that provide sensory experiences most beneficial to them at that point in development. It is this active involvement and exploration that enables the child to become a more mature, efficient organizer of sensory information.
Where can I learn more?
The most important step in promoting sensory integration in children is to recognize that it exists and that it plays an important role in the development of a child. By learning more about sensory integration, parents, educators and caregivers can provide an enriched environment that will foster healthy growth and maturation.
For more information, write to:
Sensory Integration International
PO Box 5339
Torrance, CA. 90510-5339.
Contact your local Occupational or Physical Therapy Clinic.
Order a publication list from SII.
Telephone: 310.787.8805.
Email: info@sensoryint.com
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Dylan Machin, Age 11Katrina Machin, Age 8Annissa Machin, Age 8 |
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Dear Mary, Earlier this year both Kai and Dylan, our grandsons aged 3 yrs and 11 yrs, were admitted to Ward 23 of the Freeman Hospital in Newcastle upon Tyne, for catheter examinations of the heart. For Kai, who was diagnosed with Ebsteins Anomaly at birth, this was to investigate any development or deterioration of that condition. Kai has had several episodes of discolouration of the lips and extremities with shortness of breath and delayed response. In Dylans case, no early diagnosis but high blood pressures in the heart and lungs were detected following symptoms of declining physical ability and laboured breathing. To confirm the recorded high pressures and investigate their cause, the catheter examination was considered appropriate. On the following day, for further reference, an extensive echocardiagram examination was made in an adult clinic. Kai's examination resulted in a further diagnosis of "a moderate hole in the heart" associated with his previous diagnosis. Kai's mother, our daughter Sarah has been advised that surgery would be effective, and following further consultation regarding his health and his further diagnoses of Coffin-Lowry Syndrome, and Profound Deafness (for which, Cochlear Implant surgery has been discussed) is to be carried out at some point between February and June 2007. No medication was prescribed. Dylan’s examination led the Surgeon, Dr J. O' Sullivan to conclude that Cardiomyopathy was responsible for Dylan’s difficulties. Dr O'Sullivan spoke with me immediately after surgery and said this was not at all the result he had been expecting. He explained that Dylan had a "stiff heart, which could not relax and expand sufficiently to accept the incoming flow of blood, hence the higher than normal pressures recorded. Dr O'Sullivan further explained that there was no appropriate surgical intervention at this time. Medication in the form of Spironolactone l0mg / Chlorothiazide l00mg, and after a further day of observation on Ward 23, Enalapril was prescribed. The article on Cardiomyopathy in Coffin-Lowry Syndrome in the CLSF resources is very interesting, as Dylan’s situation bears a great many similarities. Facial and physical features, and developmental achievements are all almost identical, and speech has always been a significant problem, although Dylan does recognise and use some simple words. Without fine motor skills Dylan’s actions are imprecise, he is able to hold a pen or coloured pencil but cannot colour within lines or copy letters. He often draws lines or circles which he likes to include in the imagination of his drawings. Toilet training remains difficult, there have been some small steps of progress which Dylan has maintained but there is still some way to go. Dylan was also examined in his earlier years with no untoward diagnosis of heart or respiration problems, it was only a little after his tenth birthday when we noticed a decline in his capabilities, which we observed as a reduction of physical activity associated with laboured breathing. This was a relatively rapid progression, Dylan had been almost endlessly active, within his capabilities, previously. He had grown and put on weight as would be expected, perhaps this in itself was sufficient to draw attention to an underlying condition which had not caused any earlier concerns. Hospital staff in the Ward, Surgery, Recovery/ Anaesthesia were, without exception, simply tremendous in encouraging confidence and comfort. We would like to repeat our appreciation to those whose prompt response with resources helped in a great many ways, the in depth but understandable, information which was an ideal supplement to the advice we had, the childrens books, which were an invaluable asset in helping Anissa and Katrina to understand the circumstances. And the video recording of the Catheterisation procedures and preparations which enlightened us with the experience of others in our situation. Dylan was eleven years old in June, and moved up a class in school after the summer holidays. He absolutely loves school, it's often difficult to get him out at the end of the day, and he can be quite upset at weekends when told it's not a school day. He enjoys being outside, in the garden or on his tricycle. Anissa and Katrina were nine years old in August, and they now both attend the same school. Although excellent support was provided, a widening gap in achievement levels between Anissa and her peers in her mainstream school was beginning to concern us, and at times upset Anissa herself. Both girls are extremely happy at their present school, where Anissa is already showing much greater confidence, we now hear every day of her activities and those of her friends, or of school staff by name. Katrina continues to experience "Drop Attacks" which have been reduced with the use of Clonazepam daily. The attacks are always present in the early morning, seemingly before she is fully awake, which can take some time. Throughout the day they become inconsistent, dependant upon the environment and the actions of those around her. She does fall very abruptly and heavier now, having grown somewhat, and for her protection she has worn a soft helmet for some time. We are in no doubt it has saved some potentially serious head injuries but the occasional grazed nose or fat lip are inescapable. When seated, as at the table for meals, a "Drop Attack" translates into a tremendous eruption of upper body movement. In these situations a chair with arms, pushed well into the table is the simplest and most effective protection for her. We have found that removing the "startle" element wherever possible is extremely effective, for instance when getting her out of the car, we turn her around to watch the door as we close it and there is no reaction. Conversely, Katrina can instigate drops herself by picking up a noisy toy, or, if perhaps distracted by the TV, rattling her cutlery on her plate. Thankfully to date her recovery is almost immediate and seems to cause her little concern. Katrina also has problems with "over stimulation". There appears to be a level of enthusiasm, or excitement, beyond which she cannot tolerate, whereupon she becomes extremely distressed and, at times, aggressive. At present, a policy of patiently distracting and calming appears to be effective in restoring her natural pleasant nature. In general Katrina is somewhat less aware than Dylan in many respects although her level of speech is far greater. Toiletting is also a problem for Katrina, her lack of awareness, in addition to a bowel disorder would appear to contribute greatly to these difficulties. As with Dylan, there has been some small progress although this is very inconsistent. Bob & Monica Mitchell, Great Britain
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Introducing Luca
Roma, Age 8
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Luca Roma lives in Northern Italy, in Lecco, near Milan. Luca was recently diagnosed with CLS. Luca was born with a severe dilatation of the ventricles and had an operation for hydrocephalus (ventriculostomy) when he was 7 months old. Luca could sit up at the age of 12 mm and walked alone at 26 m. His first words were “dad” and “mum” at about 20 mm. Since then he has been treated with physical and language rehabilitation, and with Feuerstein cognitive therapy. He has just started to pronounce simple sentences with subject, verb and object, he reads some known words but can not draw or write. He is a very friendly boy and would always like to have friends at home, especially for dinner! He attends the second class of a primary school with a full day assistant teacher. Luca has a 10 yr old sister who attends the same school as Luca. Sabrina Roma, Lecco, Italy |
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Thanks to your website, our daughter Carly was diagnosed with CLS about 2 years ago. What brought us to you was researching drop episodes, which are an ongoing problem for her. Carly is a senior in high school. She is in mostly special education classes, but takes some other regular classes. After graduation she will continue in the school district's post-high school program for up to 8 more years. She is very social and has a lot of friends. Our town's recreation department does a lot of programming for young adults with special needs, and so she is very busy socially. Most of her friends also have some type of special need. Carly communicates very well when it comes to speaking. She is very vocal about what she likes and does not like and she has a tremendous sense of humor. She is not good at expressing her thoughts emotionally -- such as how she feels about something. She is not good at initiating proper social conversations -- needs prompts. She will not speak if embarrassed. Carly manages just about all of her personal grooming. The exceptions are using a hair dryer and a shaver. Carly is generally very happy and gregarious. She loves sports (basketball, bowling, horseback riding, softball) and anything involving vocal music -- she has been in the school musical (in the chorus) each year of high school. She does not sing well (is somewhat tone deaf) but is enthusiastic! She is fairly well organized and has a pretty good memory. She does not problem-solve very well. She tends to rush through assignments and often has to do them over again. I would be very interested in networking with other parents about the drugs they have tried for the drop episodes. I would also like to know what is happening with kids older than Carly -- we have gotten her through childhood -- what is coming in the future? Maureen Guy, Rochester, MI |
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Sam is seven years
old he attends the local main stream school with a one-to-one teacher,
he has also just started to go to a Saturday club. Sam didn't walk till he was 2-1/2 but now he runs, climbs, jumps, everything we thought he wouldn't do! He still has poor balance when tired and a clumsy gait which is noticeable when he runs. He goes for one to one swimming lessons which he enjoys, he loves music, he loves to dance. In his last assessment for the school they decided to recommend music therapy for him - we are still waiting to hear about it. His one-to-one teacher is fantastic, she has been on Makaton courses to help him in school and she is very fond of him. He is very popular in school and all the children know him as I have always made him mix in groups as he has grown up. He needs constant supervision as he has no sense of danger, he only talks in 2-3 word sentences sometimes unclear to those who don't know him, he can be repetitive in his speech.
He is very sociable
and very happy, he is always smiling! We have never had any behavioural
problems with him at all, and although it can be hard/upsetting at times
we just get on with it as he is a very special boy and we love him just
the way he is. He has a younger brother who is 4 who he loves to bits
and vice versa and older twin brothers who are sixteen from Suzanne Griffiths, North Wales |
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give you an update on Allen. He is doing fine. I look at
Davis’s picture and then at Allen’s and they could be brothers!
Allen will be 18 in January. We have recently moved to Fort Worth, Texas and he has adjusted fine. We have a new house, a new nurse, a new school, and new friends. It has taken a little adjusting, but that is normal. Allen is now in high school (he is considered a 9th grader) and is in the same district that I teach in. I teach a special education class for children with autism, so am very aware of the special education issues that might involve him. We have had some difficulty with the school programs, but things are getting better. Most of our secondary schools have not had to deal with children with difficulties this severe. Allen is profoundly deaf, has a 2 year old mentality, does not feed himself, does not dress himself, and is not potty trained. He has sleep apnea, scoliosis, sensory issues, depth perception difficulties, and a high pain tolerance. He also aspirates on very thin liquids like milk and water. NOW FOR THE GOOD THINGS ABOUT HIM! He is one of the happiest children around. He loves to be around people and is very mischievous. He is always smiling and laughing. He is a joy to have around! I really hate it when people (doctors, diagnosticans, authorities) ask me what is wrong with him..... I wish they would ask "What is right with him?' sometimes. I love to dwell on the good things!!! Anyway, he is a
very special kid. I have now had him about 7 1/2 years and would
not trade them for anything. Lanette King, Fort Worth, TX |
 Lanette and Allen |
Photo Gallery |
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 Damien Sands, Age 24 |
Jeremy Englestad, Age 10, with Dad and sister, Faith |
Fumiatsu Hirayama, Age 10, in Disneyland, Tokyo |
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Pressure sores (bedsores, decubitus ulcers) are areas of skin damage resulting from a lack of blood flow due to pressure.
Pressure sores can occur in people of any age who are bedridden, chairbound, or unable to reposition themselves. Pressure sores usually develop below the waist, although they can occur anywhere on the body. They tend to occur over bony projections where pressure is concentrated, such as the lower back, heels, elbows, and hips. They may occur where pressure from a bed, wheelchair, cast, splint, or other hard object contacts and presses on the skin. Pressure sores may be painful and can be life threatening. They lengthen the time spent in hospitals or nursing homes and increase the cost of care.
Causes
The skin has a rich blood supply that delivers oxygen to all its layers. If that blood supply is cut off for more than 2 or 3 hours, the skin dies, beginning at its outer layer (the epidermis). The dead skin breaks down and forms an open sore or ulcer. Once the skin is broken, bacteria may enter the opening and cause an infection.
Pressure reduces blood flow to the skin. The intense pressure created by sitting in a chair or lying on a mattress cuts off blood flow over bony areas. Most people do not normally develop pressure sores because they constantly shift position without thinking, even when asleep. However, some people are incapable of normal movement and are therefore at high risk of developing pressure sores. This group includes people who are paralyzed, comatose, very weak, or restrained. Paralyzed and comatose people are at particular risk because they may be unable to sense discomfort or pain, signals that normally motivate people to move or to ask to be moved.
Friction can lead to pressure sores as well. Repeated irritation may wear away the top layers of skin. Such irritation may occur if a person scrapes the heels, elbows, or knees or wears poorly fitted shoes.
Skin moisture can lead to the development of pressure sores. Prolonged exposure to moisture—often perspiration, urine, or feces—weakens and damages the skin surface, making pressure sores more likely.
Inadequate nutrition increases the risk of developing pressure sores and slows the healing process of sores that do develop. Malnourished people lack the protective layer of fat that helps pad the skin and that keeps the blood vessels from being squeezed shut. People whose diets are deficient in protein, vitamin C, or zinc, which are essential for normal skin repair, are at increased risk as well.
Symptoms
For most people, pressure sores cause some pain and itching. However, in people whose senses are dulled, even severe, deep sores may be painless.
Pressure sores are categorized into four stages according to the severity of damage, from redness and inflammation (stage 1) to destruction of muscle, fat, and bone (stage 4).
Infection delays healing of shallow sores and can be life threatening in deeper sores. Infection can even penetrate the bone (osteomyelitis), requiring weeks of treatment with antibiotics. In the most severe cases, infection can spread into the bloodstream (sepsis).
Prevention
Prevention is the best strategy for dealing with pressure sores. In most cases, pressure sores can be prevented by meticulous attention from all caregivers, including nurses, nurses' aides, and family members. Any sign of redness or discoloration is a signal that the person needs to be repositioned and kept from lying or sitting on the discolored area until it returns to normal.
People who cannot move themselves should be repositioned every 2 hours—more often if possible. The skin must be kept clean and dry, because moisture increases the risk of developing pressure sores.
Bony projections (such as heels and elbows) can be protected with soft materials, such as cotton or fluffy wool. Special beds, mattresses, and seat cushions can be used to reduce pressure in people who are wheelchair-bound or bedridden. These products can reduce pressure and offer extra relief. A doctor or nurse can recommend the most appropriate mattress surface or seat cushion. It is important to remember that none of these devices eliminate pressure completely or are a substitute for frequent repositioning.
Treatment
Treating a pressure sore is much more difficult than preventing one. Adequate nutrition is important in helping pressure sores heal and in preventing new sores from forming. A well-balanced, high-protein diet is recommended as well as a daily high-potency vitamin and mineral supplement. Supplemental vitamin C and zinc may help with healing as well.
In the early stages, pressure sores usually heal by themselves once pressure is removed. When the skin is broken, a doctor or nurse will consider the location and condition of the pressure sore when recommending a dressing. Film (see-through) dressings help protect early-stage pressure sores and allow them to heal more quickly. Hydrocolloid (oxygen- and moisture-retaining) patches protect, keep the skin appropriately moist, and provide a healthy environment for deep sores. Other types of dressings may be used for deeper sores, those that ooze a lot of fluids, and those that are infected.
If the sore appears infected or oozes, rinsing with saline and wiping gently with a gauze pad is helpful. A doctor may need to remove (debride) the dead material with a scalpel or with chemical agents.
Deep pressure sores are difficult to treat. Sometimes they require skin grafting, in which healthy skin is transplanted to the damaged area. Often, when infections develop deep within a sore, antibiotics are given. When bones beneath a sore become infected, the bone infection (osteomyelitis) is extremely difficult to cure and may spread through the bloodstream, requiring many weeks of treatment with an antibiotic.
Thanks for Caring!
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The following families or individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:
Joyce K. Newcomb, Easton,MD
In memory of Ian Scowcroft on the occasion of what would have been is 85th birthday, and in honor of his grandson, Ian Scowcroft. “I think of Milton every day, and this is the one way I can remember him.” - Joyce
Monica and Bob Mitchell, Great Britain
Robert & Madeleine Klein, Olney, MD
Greg & Lissa Walter, East Bethel, MN
Send your donations to:
Coffin-Lowry Syndrome Foundation
c/o Mary Hoffman
3045 255th Ave SE
Sammamish, WA 98075
(U.S. Funds, please)
Donations made after August 9th, 2006 are tax deductible. EIN 20-3377465
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Visits |
Country |
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19093 |
United States |
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1267 |
Canada |
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1039 |
United Kingdom |
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598 |
Australia |
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242 |
Netherlands |
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237 |
Japan |
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166 |
Germany |
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153 |
France |
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135 |
Spain |
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133 |
Uruguay |
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113 |
Sweden |
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89 |
Singapore |
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87 |
Belgium |
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70 |
Israel |
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64 |
Italy |
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59 |
India |
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58 |
Mexico |
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51 |
South Africa |
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49 |
Brazil |
