[tri-med] Re: Hospital Def'n for Down Syndrome, coming and going


Catherine, 

You misunderstood my statement. If I wholeheartedly welcomed and accepted Annie 
then clearly, a child with Downs would be a walk in the park by comparison.

What I meant was in the absence of balanced information of the reality of the 
situation....as you mention the humour, the joy and the good things, the 
picture I was left with was someone who was sexually perverse, angry and 
depressed. 

This is not a pretty picture and it is not true either. AS one of my friends 
said, the article could describe almost any teenager on a bad day.

Here are some other references to downs def'n which I think are more balanced. 

http://www.cincinnatichildrens.org/health/heart-encyclopedia/disease/syndrome/down.htm?GOSEARCH.X=0\&GOSEARCH.Y=0


http://www.cdss.ca/site/resources/down_syndrome/Your%20Child%20with%20Down%20Syndrome.pdf


http://www.marchofdimes.com/professionals/14332_1214.asp

Barb



> From: ctrewin@xxxxxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: Hospital Def'n for Down Syndrome, coming and going
> Date: Sun, 24 Feb 2008 17:07:34 -0500
> 
> Hey Barb,
> 
> I too thought that the negative was really stressed in this document and
> that very little positive was highlighted. Like all children good training
> in manners (public and private behaviours) are needed, though truthfully it
> is a life-long challenge for children with cognitive delays at any level.
> Mention is made of language skills acquired, and yes, reading and writing
> can be achieved but little mention of the difficulty with spoken language
> which may well be one of the greatest challenges.
> 
> I have not read the mention articles from other sites and would appreciate
> the links if you have them handy.
> 
> Barb, having a child with Down' Syndrome is a life-long challenge. Both that
> of the child and the parent for in this population the child can expect (as
> is their most basic human right) to outlive the parent. The parent must have
> a plan for the child's future that doesn't depend on them being present.
> 
> What is not mentioned is that the Down's individual while usually (and here
> it depends more on the training/upbringing and hence I think the mention in
> the article accurate in that independence must be encouraged right from the
> start) can have a good measure of independence. i.e. supported housing is
> possible, as in an apartment that is supervised and has staff to support
> life skills versus a fully supported/cared for environment as in a group
> home. Also a supported or sheltered work program is also needed in
> adulthood. Yes, the typical Down's child will need support for their entire
> life. Part of the reason for the needed support is that this 'typical Down's
> child' can be expected to be very 'easy-going' and easily taken advantage
> of. No mention of bubbling laughter, wonderful sense of humour.
> 
> I am sorry that you think this life would be detrimental to your family.
> 
> Catherine
> 
> 
> 
> 
> 
> 
> 
> 
> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx
> [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Barbara Farlow
> Sent: Wednesday, February 20, 2008 5:28 PM
> To: tri med lists
> Subject: [tri-med] Hospital Def'n for Down Syndrome, coming and going
> 
> 
> Here is the hospital's def'n for Down Syndrome. My opinion is that it is
> quite negative and I would feel that giving birth to such a child would be
> be a detriment to himself and society.
> Some people complained about it, and it was removed. Then, a week later it
> was back again, unchanged. Just today, it is removed.
> 
> I see a big difference between this definition and the one provided by other
> world class inst in the US.
> 
> Does anyone have an opinion?
> 
> 
> 
> What is Down syndrome?
> 
> 
>             Down Syndrome Karyotype
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>             People with Down syndrome have an extra copy of chromosome 21.
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>       Down syndrome is a genetic disorder. Most people have a total of 46
> chromosomes. Most children with Down syndrome have a total
>          of 47 chromosomes. Down syndrome results from this extra genetic
> material. Scientists are still learning about what causes
>          this extra genetic material and exactly how it causes the problems
> of Down syndrome.
> 
>       Down syndrome is the most common disorder of human chromosomes. It is
> usually diagnosed shortly after birth during a baby's
>          first physical exam.
>       How is it diagnosed?
>       The
> diagnosis is usually based on physical features. Eyes often have a
> slant to the openings and extra skin at the middle corner. The mouth
> tends to stay open with the tongue sticking out. Muscle tone is usually
> low, making the arms and legs more relaxed. How will your child grow and
> develop?
>       Growth and development is unique to every child. Children learn to
> walk, run, use their hands and eyes, understand language,
>          speak, think, and solve problems at different rates. Children with
> Down syndrome do all of these things too. However, children
>          with Down syndrome generally grow more slowly, learn more slowly,
> and have more trouble with reasoning and judgment than other
>          children. They often have a short attention span. They are very
> impatient and get frustrated and angry.
> 
>       Children with Down syndrome generally should not be compared in their
> development with other children. Growth and developmental
>          milestones unique to children with Down syndrome have been
> developed and are available.
> 
>       As your child reaches adolescence, she will become more aware of her
> limitations. Emotional problems sometimes occur at this
>          age. They also may not know how to control sexual impulses.
> 
>       Emotional problems often include being:
> 
>             angry toward herself and others for the things she cannot do or
> accomplish compared to others around them
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>             rude or making out of place comments (things we might all think
> of but know to keep to ourselves)
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>             sad or feeling hopeless over limitations
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>             agitated and scared by tasks which are difficult for them
> 
>       Doctors believe that a child's emotional health is best supported by
> staying involved in mainstream home, school, and community
>          activities as much as possible.
>       How do you care for your child?
>       Children with Down syndrome
> can have many health problems. Some have a heart problem at birth or
> later in life. As your child grows older, she may have vision, hearing,
> bone, joint, hormone, or dental problems. Because of these problems, a
> child with Down syndrome needs more medical and dental care and educational
> help to reach her full potential.
> 
> 
>             Feeding
>                Breastfeeding a baby with Down syndrome is usually successful
> and improves the infant's ability to fight infection.
>                Children with Down syndrome tend to have a small mouth and
> smooth, flat tongue. This may cause spilling of liquids out of
>                   the side of the mouth. This problem usually goes away
> during infancy as tongue control improves.
> 
>                Make
> sure your baby is fully awake before feeding. Place pillows underneath
> the baby during the feeding. Using a hand to support your child's chin
> and throat can sometimes help during feeding. Talk to your doctor if
> you have additional questions.
> 
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>             Heart evaluation
>                Because many children with Down syndrome
> are born with heart defects, your child should be checked by a
> paediatric cardiologist soon after birth. A test called an
> echocardiogram, which uses sound waves to create a picture of the
> heart, is recommended.
> 
> 
>             Thyroid screening
>                Babies are tested in the hospital shortly after birth for low
> thyroid hormone levels. This is usually one of several tests
>                   known as the "newborn screen." Children with Down syndrome
> sometimes have low thyroid hormone levels.
> 
>                Thyroid screening tests should be repeated for children with
> Down syndrome at 6 months, 12 months, and then each year after
>                   that.
> 
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> 
>             Hearing
>                Many children with Down syndrome
> have hearing problems. Often this is due to frequent ear infections or
> fluid in the middle ear. There may be other reasons for poor hearing.
> Hearing problems may come and go or be always present. Any cause of
> hearing loss should be treated by your doctor to maintain good hearing
> and allow better language development.
> 
> 
>             Vision
>                7 of every 10 children with Down syndrome will need glasses.
> Around 20% of children with Down syndrome have a squint. A squint
>                   is when the eyes are pointing in slightly different
> directions. This needs to be treated. Most children with Down syndrome
>                   need to see an eye doctor at about one year of age.
> 
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>             Dental and oral concerns
>                The teeth of a child with Down syndrome usually come in later
> than the teeth of most children. The first tooth usually appears
>                   between 12 and 48 months. Fifty percent of children with
> Down syndrome are missing one tooth or more.
> 
>                Teeth often will not be in the best position for chewing. For
> example, a child may have an overbite (the upper teeth coming
>                   out forward) or a crossbite (the lower teeth set to one
> side of the upper teeth).
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>                For an unknown reason, cavities are less common. Careful
> brushing and flossing is needed to prevent cavities and gum disease.
>                   Gum disease is more common in children with Down syndrome.
> 
>                Children with congenital heart defects who are going to have
> dental procedures performed often need antibiotic medicine before
>                   the procedure.
> 
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>             Breathing and sleep apnea concerns
>                Air
> passages in the nose, mouth, and chest are smaller than in other
> children. As a result of the narrowing, a number of problems can occur.
> Mouth breathing may develop and this can lead to teeth problems.
> Snoring may be a sign of a narrowed airway. Narrowing may become so
> severe that the airway becomes blocked, causing air flow to stop. This
> problem is known as sleep apnea.
>                Check with your doctor if your child snores a lot, especially
> if she has loud snoring, followed by silence, a snort, partial
>                   awakening, and then snore again.
> 
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> 
>             Cervical (neck) spine x-ray
> Between the ages of 3 and 5 years, all children with Down syndrome
> should have x-rays of the upper spine. The x-rays are taken to look for
> too much movement of the bones in the upper spine when the neck is held
> in different positions. If a child has too much movement, the problem
> is called "atlanto-axial instability."
> 
> 
>                Dislocation,
> or slippage, of these bones in the upper spine is not common but can
> result in serious injury. Usually, before an injury, the child would
> have several weeks of symptoms such as: neck pain, head tilt, breathing
> changes, weakness, or changes in walking ability. If your child has
> these symptoms, tell your doctor so the spine can be checked. A careful
> neck exam is important before your child participates in sports.
> 
> 
>             Behaviour
>                Ignore outbursts unless your child becomes destructive. Then
> use time outs or mild physical restraint until she is calm. Reward
>                   your child for times when outbursts don't occur.
> 
> 
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>             Sexuality
>                Teach your child to not stare at others of the opposite sex,
> make sexual comments, or touch their genitals in public.
> 
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>             Emotional health
>                Help your child deal with her frustration with her
> limitations. Suggest other activities which she can do. Behavioural training
>                   programs may help your child learn how to respond calmly
> and appropriately.
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>             Social development
>                Children with Down syndrome tend to become dependent on
> others and will need training to encourage independence.
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>             Unproved therapies
>                You will probably hear of many treatments for children with
> Down syndrome.
> They may range from megavitamin therapy to facial surgery. The good
> effects of many of these treatments are unproven and some may be
> harmful. Check with your child's doctor before trying any treatment.
> 
>          What kind of treatment and therapy will your child need?
>       Early
> intervention services are a variety of therapies that parents and
> professionals do together to help a child reach her greatest potential.
> The therapies, along with improved medical care, parent education, and
> increased social acceptance, may explain why people with Down syndrome
> generally having better skills and higher levels of functioning than in past
> decades.
> 
>       The professionals who can provide with early intervention services:
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>             Developmental paediatrician: evaluates and treats medical
> factors affecting development.
> 
>             Infant educator: helps with thinking and problem solving skills.
> 
>             Paediatric physical therapist: helps with body movement skills.
> 
>             Paediatric occupational therapist: helps with feeding and hand
> skills.
> 
>             Speech and language therapist: helps with communication skills.
> 
>             Mental health professional: provides counseling and emotional
> support.
> 
>       Often
> mental health specialists can help design behavioural training
> programs. They can also help caregivers learn training methods. For
> emotional and behavioral problems, psychiatric medicines may help
> control moods and inappropriate behaviour. What is the outlook?
>       The health care needs of children with Down syndrome are better
> understood than ever before. Scientists are improving their
>          understanding of the genetic basis of the syndrome. Much can be
> done to prevent and treat medical problems associated with
>          the syndrome.
> 
>       Although children with Down syndrome
> may be slow in their achievements and must overcome the attitudes of
> others, most lead productive, fulfilling lives. You can help your child
> reach her potential by making sure your child has regular checkups and
> receives proper medical treatment.
>       Additional information about Down syndrome is available from many
> books, on-line services, and parent and professional organizations.
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>                                              SYNDROME
>                                              A collection of signs and
> symptoms that generally stem from a single cause and that together point to
> a diagnosis.
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>                                              CHROMOSOMES
>                                              Long
> lengths of coiled DNA that contain genes; each human cell contains 23
> matching pairs of chromosomes for a total of 46 chromosomes.
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>                                              DOWN SYNDROME
>                                              Also known as ?trisomy 21,?
> this is a chromosomal abnormality where there is an extra copy of chromosome
> 21. Children with Down syndrome
> are born with varying degrees of mental retardation. These children
> tend to have eyelids that slant upwards, small folds of skin at the
> corners of the eyes, and slightly flat noses.
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>                                              INFANCY
>                                              The period from one to 12
> months of age.
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>                                              THYROID
>                                              The
> butterfly-shaped gland in the lower neck that makes thyroid hormones.
> The thyroid hormones are chemicals controlling many important processes
> in the body that produce energy. For example, thyroid hormones control
> how our bodies use oxygen, and break down carbohydrates and cholesterol from
> food. They also affect our growth and thinking.
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>                                              CONGENITAL
>                                              Present at birth.
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>                                              ANTIBIOTIC
>                                              A medication that prevents or
> cures bacterial infection. An antibiotic interferes with the growth of
> bacteria.
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>                                              PAEDIATRICIAN
>                                              A
> medical doctor who specializes in the development of children and the
> diagnosis and treatment of diseases affecting children. Some
> paediatricians specialize in specific types of diseases and disorders.
> Others may be available to act as a regular doctor for well baby
> visits, physicals, immunizations and general health concerns.
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>                                              INFANT
>                                              A baby who is one to 12 months
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>                                              OCCUPATIONAL THERAPIST
>                                              An
> occupational therapist (OT) works with children and their families to
> help a child develop occupational skills. A child's main occupational
> skills are play, self-care and going to school. The occupational
> therapist assesses a child's development, function and skills and
> develops a treatment plan to improve these skills as necessary. With
> infants and babies, an OT will assess and help with feeding, movement
> and cognitive skills.
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>                               Last Reviewed
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> _________________________________________________________________
> 
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>                   Families Helping Families On-line
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