Down Comforter: A Parent's Guide to Down Syndrome

Down Comforter A Parent’s Guide to Down Syndrome

Congratulations and Welcome!

We cannot wait to meet the newest addition to your family.

From here on we have to take our cue from the immortal Dr. Suess who said: “Oh, the places you’ll go! There is fun to be done! There are points to be scored.There are games to be won.�

We know one thing for sure: your baby is simply packed with promise and potential and is entering a world that glitters with opportunities backed with solid facts and highly creative, amazingly effective solutions.

Above all, we know you are not alone, but have become part of a wonderfully caring community.

Welcome to the Down Syndrome Association of Minnesota.

“Your baby has Down syndrome...”

If you are like most of us, that may have been the last thing you heard for a while.

It’s breath-taking news.

Been there.

If you’ve caught your balance we’d like to offer the next step in what we are pretty sure will be a rewarding journey: www.dsamn.org — the Down Syndrome Association of Minnesota.

It’s the location of pretty much everything you’ll ever need to know about Down syndrome.

Ready? If not, take your time. How and when you move toward the future is up to you.

Getting Started We won’t pretend we know what you need.

Some want to plunge right in, make contact, find support, share.

Others need to be alone.

If you feel a need for human contact, want a reassuring hug, a smile on the face of somebody who has been exactly where you are right now, knock on our door: www.dsamn.org You’ll connect, almost immediately, with about 4,000 moms and dads, brothers and sisters, aunts, uncles and cousins and friends of people with Down syndrome.

Maybe all you want right now are the facts. Maybe you want to know everything there is to know about Down syndrome and want to get at that right now.

If so, go to www.dsamn.org.

The Down Syndrome Association of Minnesota offers rich, factual information about anything and everything there is to know about Down syndrome.

Big claim?

Yes big and always getting bigger.

It’s what we set out to do more than 30 years ago and now we are a portal to the vast and ever-expanding world of information about Down syndrome.

But, it’s your choice.

How do you want to get what you need?

We have real books in our library, staff experts ready to chat with you. We can be in your mail box, inbox and online. We’re on Facebook and Twitter. We hold five major live conferences a year featuring internationally respected experts on virtually every facet of Down syndrome. We provide financial support and training to more than 20 parent groups throughout the upper midwest. And, we have virtual parent groups accessible from your desktop, tablet and smart phone from anywhere in the world.

The Facts You may not feel it right now, but you are most fortunate as there has never been a better time to be born with Down syndrome. Where not long ago all about Down syndrome was a dark secret, the world is now filled with solid facts and highly creative theories are being tested around the world.

You’re adjusting to a baby plus Down syndrome. It’s tough, we know. Parenting a son or daughter with Down syndrome has its challenges. The best way to cope is through information.

Let’s get you started.

Nothing you did caused Down syndrome.

There is nothing you could have done to prevent it. We don’t know the cause and it affects people of all races and economic levels.

Down syndrome: • Occurs when an individual has an extra copy of chromosome 21; that’s known as a trisomy.

• Takes one of three forms: trisomy 21 accounts for 95% of cases, translocation about 4% and mosaicism about 1%.

• Is the most common genetic cause of developmental delay, affecting about one in every 700 babies in the U. S. More than 400,000 people live with Down syndrome in the U. S. • Occurs in people of all races and economic levels.

• Has no known cause nor prevention. The incidence increases with the age of the mother, but younger women have more babies.Thus, 80% of children with Down syndrome are born to women under 35.

• Is neither a disease nor a condition. It is a syndrome, consisting of about 50 traits and conditions common among people with this trisomy, such as low muscle tone, small stature and a single deep crease across the center of the palm. Every person with Down syndrome, however, is unique; some have many of these, but many have a few.

• Comes with increased risk for heart defects, respiratory and hearing problems, childhood leukemia, and thyroid conditions.

30-50 percent of individuals with Down syndrome are born with heart defects and 8-12 percent with gastrointestinal tract issues. Most are treatable or correctable by surgery.

• Doesn’t necessarily shorten lives. In fact, life expectancy for people with Down syndrome has increased dramatically – from 25 in 1983 to 60 today.

• Has a mild to moderate effect on cognitive development resulting in a wide variation in abilities, behavior and physical development.

• Doesn’t mean isolation. Our sons and daughters attend school, work, participate in decisions that affect them, and contribute to their communities. Increasingly they hold jobs, live independently and enjoy recreational opportunities.

Quality educational programs, a stimulating environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to lead rich and fulfilling lives.

What you say is important “The difference in the right word and the almost right word is the difference between lightning and the lightning bug.”

– Mark Twain We use language to describe our world. Obvious, perhaps, but language can also shape and define what’s described. It’s just so with the language we use to describe Down syndrome.

It is never too early to start using it right.

It’s either Down syndrome or trisomy 21. There is no apostrophe on Down; the “s” in syndrome is not capitalized.

Our community prefers what’s called “people first language.” An individual with Down syndrome is an individual first, so the emphasis should be on the person, not the disability. A person with Down syndrome has many qualities and attributes that can be used to describe them.

Please say “the person with Down syndrome.”

Deitrich Gesk Photography Deitrich Gesk Photography

Connecting You may be feeling utterly alone, like you are the only person in the entire universe. Been there too. It may come as a surprise – a delightful surprise, we hope – that you are far from alone.

You have, instead, become part of a warm and intensely loving community just teeming with people ranging from parents like you to siblings, extended family members, teachers, therapists, and professionals of all kinds. They are people who understand exactly where you are and what lies ahead.

That said the first step is up to you.

When you are ready, contact us by calling (651) 603-0720 or email dsamn@dsamn.org. Before you do, perhaps you’d like to consider the many ways we reach out: Parent-to-Parent Volunteer parents will meet with you by phone, email or in person. Contact the Down Syndrome Association of Minnesota office at dsamn@dsamn.org or (651) 603-0720 if you want to connect.

We try to match families by location and/or specific parenting experience (medical needs, etc.).

Parent Groups New members are always welcome to our parent groups which provide support and information to parents of children with Down syndrome.They offer a place to share the joys and challenges of raising a child with Down syndrome, plus information, new ideas and other parents of children with Down syndrome.

Groups tend to meet monthly and often take a summer break. All are led by a trained facilitator. Some have open discussion time while others offer more structured meetings with guest speakers or presentations.

For meeting locations and times, please call the office or check the website: www.dsamn.org Social Media You may prefer to connect with other parents via the DSAM Facebook page: www.facebook.com/ DSAMN or discussion group: www.facebook.com/groups/DSAMN. Many of our parent groups also have Facebook groups, all of which are listed on our parent group page on www.dsamn.org.

Some next steps Health Care In a very short time, health care for individuals with Down syndrome has dramatically improved and been utterly transformed.Your child is a unique individual and health care simply must address the specific needs of each child.

For all of these reasons the American Academy of Pediatrics has developed guidelines, available on the Association site at www.dsamn.org/healthcare or by calling us at (651) 603-0720, to help physicians provide your child with the health care he or she needs.

Early Intervention Average. We bet you won’t find an ‘average’ child anywhere. He or she is a statistical myth. Many children need additional help as they grow, develop and learn. The challenge is to find the resources that are best matched to each child.

A good place to start toward accessing the services you and your child need is by going to www.dsamn.org or by calling us at (651) 603-0720. There you will find links or get referrals to both public and private resources; resources that offer supportive services that can start as early as today and extend through the time your child heads off to pre-school or kindergarten and beyond.

A final thought Change comes constantly. We said that the world glitters with solid facts about Down syndrome and highly creative theories are being tested around the world. Point is that the future is filled with promise for our children, but it is up to us to pay attention as new ideas percolate. So please go to www.dsamn.org or call us at (651) 6030720 now. Then, come back regularly, as our website is constantly being updated with new information and ideas.

“The Down Syndrome Association of Minnesota was our lifeline for resources, support and most importantly, celebration.”

– A new mom

What can the Down Syndrome Association of Minnesota do for you?

By now we hope you know the Association is a large, multi-faceted, information-rich organization whose sole purpose is to enhance the lives of people with Down syndrome. What exactly that will mean will be defined by the programs and services you feel are right for you and your family. While we serve people throughout their lives, the following is a partial list of our programs and services frequently accessed by our newest families. For complete details please go to www.dsamn.org or give us a call at (651) 603-0720.

Resources for new families • Down Comforter: A Parent’s Guide to Down Syndrome for new and expectant parents • Parent to parent visitation in the hospital or home • New parent breakfast • Grandparent packets • More than 20 parent groups in person and online throughout the region Conferences • Biennial Regional Conference • Annual Conference for Grandparents • Annual Conference for Educators Informational Resources • Website: www.dsamn.org • Special Times - a quarterly newsletter • Resouces lending library • Speakers for groups interested in Down syndrome

“Opening Hearts — Changing Minds” 656 Transfer Road St. Paul, Minnesota 55114 (651) 603-0720 • (800) 511-3696 www.dsamn.org