Down Syndrome Children…Footprints in Our Hearts

Puro Sounds

In 1866, a physician named John Langdon Down first described a set of children with common features who were distinct from other children with mental limitations. He referred to them as “Mongoloids” because of their slanted eyes that were similar to those people from Mongolia.
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  In the 1960’s and 70’s genetic researchers changed the name to “Down Syndrome” It was not until 1959 did researchers  Jerome Lejeune and Patricia Jacobs first determined that the cause of Down Syndrome to be the triplication of the 21st chromosome. It is called “Nondisjuction” or “Trisomy 21”.
It makes up 95% of all Down Syndrome cases.  You might already know that we get our chromosomes from our mother and father. Remember the 23 pairs of chromosomes — half are from your mom and half are from your dad? But doctors aren’t sure why this chromosome problem happens to some babies. 
  Anyone can have a baby with Down Syndrome.  But the older the mother, the greater the risk.About 1 out of every 800 babies born has Down Syndrome, no matter what race or nationality the parents are. This results in approximately 5,000 children born with Down syndrome each year.
 The chance of having a baby with Down Syndrome increases with the mother’s age — from about 1 in 1,250 for a woman of 25 to about one in 100 for a woman of 40.

In the United States today, Down Syndrome affects approximately 350,000 people.   It is very important to remember that Down Syndrome is not caused by anything the mother did or did not do before or during the pregnancy.

It is not contagious, so you can’t catch it from someone else. You are born with it.  No one gets Down syndrome later in life. down-201x300

Most children with Down syndrome have:

  • Distinct facial features, such as a flat face, small ears , slanting eyes , and a small slanting mouth.
  • A short neck and short arms and legs.
  • Weak muscles and loose joints.  Muscle tone usually improves by late childhood.
  • Below-average intelligence.

What can you expect with Down syndrome?

Children with Down syndrome usually have delayed development in speech and movement.  They may have a slower rate of growth and may be shorter than their peers.

They may also have certain physical problems.  Many of these conditions can be treated and controlled, though. They include:

  • Heart defects
  • Hearing and vision problems
  • Tendency to get infections more easily
  • Intestinal problems
  • Thyroid problems
  • Obesity
  • Leukemia
  • Early-onset dementia

It would be nice if everyone could think of children with Down Syndrome as children first, and their disability second, hence “Children with Down Syndrome”.

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When a baby with Down Syndrome is born, parents can feel shocked, angry and sad. Many parents find it useful to join support groups that provide both information and understanding.

These groups often support for other family members too, such as brothers, sisters and grandparents. Many families say that becoming involved in educational activities through playgroups or early intervention programs is helpful, also.

Some things you may want to consider:

    • Most children with Down syndrome are healthy and active.
    • Parents can support their child with Down syndrome by providing a caring and safe environment.
    • It is important to give the child with Down syndrome opportunities like other children in the family.

  • Children with Down syndrome will benefit from extra help in their early years, such as speech pathology, physiotherapy and the services provided in early intervention programs.
What about Behaviors?
We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Most people with Down Syndrome are very sensitive to expressions of anger by others. Anger would only be allowed in special sound proof rooms.
 
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Children with Down syndrome benefit from lots of stimulation through many types of experiences with different people, places, toys, sounds, feelings, etc. These experiences help your child’s development.

  • Talk to your child as much as possible. A child needs to hear your voice even though she may not understand exactly what you are saying.
  • Create an environment that suits your child’s needs and abilities. Encourage movement and exploration.
  • Encourage your child to play with toys of different sizes and textures.
  • Accept that your child will develop at his or her own speed and in his or her  own way.
  • Understand that you may have to repeat an activity many times before your child can do it well.
  • Say your child’s name often, especially when you are giving praise.

It is important to remember that while children and adults with Down Syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

Most children with Down Syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different.  Most children attend their neighborhood schools, some in regular classes and others in special education classes.

Some children have more significant needs and require a more specialized program.

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  • Early intervention programs give you the chance to learn about the special needs of your child. They will also show you different ways to help your child to learn.
  • Children benefit from mixing with other children.  As well as going to early intervention programs, your child can go to childcare and preschool.
  • Childcare centers and prechools are usually given special help when a child with Down Syndrome attends. Children with Down Syndrome can join in many of the lessons at school. They will need extra help to learn to read and write.
  • It is important to concentrate on developing listening and talking skills. Speech is often slow to develop in children with Down syndrome. Therefore, the use of hand gestures (signs), short sentences, clear instructions and visual cues is a great help to these children.
  • People with Down syndrome are slower to learn many things, but like everyone else they go on learning for all of their lives.

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If we could look through  the eyes of these Special People our thoughts would change like…..

1. Affection, hugging and caring for others would make a big comeback.
2. All people would be encouraged to develop and use their gifts for helping others.
3. People would be refreshingly honest and genuine.
4. A stuffy, high society would probably not do well.
5. People engaged in self talk would be considered thoughtful and creative.
6. Self talk rooms would be in offices and libraries
7. Order and structure would rule! A. schedules and calendars would be followed B. Trains & planes would run on time. C. Lunch would be at 12:00 and Dinner at 6:00. D. Work time would be work time E. Vacation would be vacation.
8. People would be expected to keep their promises.
9. Last minute changes would be strongly discouraged
10. Places would be neat, clean and organized including cities, countries, etc.images
11. Lost and founds would go out of business
12. Great deal of tolerance for repeating the same phrase would occur
13. The words hurry and fast would not be uttered in polite society.
14. Plenty of time would take their place
15. Stopping to smell the roses would not be just a cliché.
16. Work would be revered, no matter what kind, from doing dishes to rocket science.
17. Speed would be far less important than doing the job right.
18. Work would be everyone’s right, not a privilege. 19. Weather would be the only essential news item.
20. News would be more local, like a new McDonald’s opening!
21. Acting and theatrical arts would be encouraged for all.
22. You may not hear a great deal about exercise, but you would about dancing!
23. Richard Simmons and John Travolta would be national heroes!
24. Elvis, the Beatles and the Beach Boys would still be the number 1 on the hit parade.
25. I Love Lucy, and “Happy Days!” would still be very BIG
26. There would be fewer movies but they would be played over and over!
27. People would not hurt the feelings of others and they would also not lie or keep secrets!
 
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Downs Syndrome children are a special blessing and a hidden treasure for a society that must see that beauty is not skin deep.

WELCOME TO HOLLAND  was written by Emily Perl Kingsley .  She has a son who has Down Syndrome. Welcome to Holland ” accurately describes some of the things you can expect to feel when finding out your child has a disability.

How can you  describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

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When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.””Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

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So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say “Yes, that’s where I was supposed to go.  That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Down syndrome and other conditions often take parents on an unexpected journey. “Our children really give us a new direction in our lives.”
“Parents of children with Down syndrome go through a process of grieving, but at some point, the diagnosis becomes less of a focus, and they start to really see their child as a person, not a medical condition.”
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*Down Syndrome Creed*
My face may be different But my feelings the same

I laugh and I cry

And I take pride in my gains.

I was sent here among you To teach you to love

As God in the heavens

Looks down from above

To Him I’m no different

His love knows no bounds.

It’s those here among you In cities and towns

That judge me by standards

That man has imparted

But this family I’ve chosen

Will you help me get started.

For I’m one of the children

So special and few.

That came here to learn

The same lessons as you.

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That love is acceptance

It must come from the heart.

We all have the same purpose

Though not the same star.

The Lord gave me life

To live and embrace

And I’ll do it as you do

But at my own pace.

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Ironically, for those persons with Down Syndrome who do make it out of the womb,  life is better than at any time in our nation’s history.  A baby with Down Syndrome born in 1944 could expect to live about twenty-five years. 

Today, people with Down syndrome routinely survive into their fifties and sixties.  Most can enjoy happy, productive lives. Most live with their families or share group homes with modified supervision and some measure of personal autonomy. 

Many hold steady jobs in the workplace.  Some marry.  A few have attended college.  Federal law mandates a free and appropriate education for children with special needs through the age of twenty-one. 

Social Security provides modest monthly support for persons with Down syndrome and other severe disabilities from age eighteen throughout their lives.

  These are huge blessings.Life is beautiful in every form and every child is a blessing – not always by what the child is capable of, but by how the child makes us grow.

Magic Cabin

More Information on Down Syndrome

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These People Are So Special, Give Them Lots Of Hugs and Kisses Everyday!

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Hello, We are very excited to be here. We hope you will like our website and come back often. We have 10 children between us and 25 grandchildren. We love anything family related. Dennis is a network dispatcher and Barbara works in the food industry and just finished a course in Medical Coding. Thank you for visiting.

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