Parents of Children with Down Syndrome Should Know That They Are #NeverAlone

by Cassie Fiano from Victory Girls Blog:
I was alone when I found out Wyatt had Down syndrome. And I mean that literally: I was alone in my house. Less than a week earlier, my husband had deployed to Afghanistan. We knew that our odds of having a baby with Down syndrome were 1 in 6. He left the decision on whether or not to get an amniocentesis and know for sure up to me, and I just couldn’t go the rest of the pregnancy not knowing. I got the amnio two days after I watched him get on a bus to go to war, kissed him goodbye and hoped it wouldn’t be the last time. And three days after that, I got the phone call that would change my life forever, alone in my house, with no one to help me through it. My family and best friends were hundreds of miles away in our hometown. My husband was at war. And my world had just been shaken to its very core.
Luckily, I had one of the good ones — doctors, that is. My maternal-fetal medicine specialist was great. He never pushed abortion on me, he never gave me outdated and negative stereotypes. Instead of giving me the news and leaving me floundering on my own, he offered me resources and told me he would help me get in touch with the local Down syndrome support group. Instead of telling me about all the things that my son wouldn’t be able to do, he talked about how he would be playing soccer in five years, and joked about how squirmy he was during ultrasounds. I appreciated all of that, more than I can possibly say, but it didn’t change the fact that I still cried for literally days on end, and it took me weeks to stop being scared and finally accept the diagnosis.

Breaking through the disability barriers in Bankok

from the Bankok Post:
A group of parents and supporters based at Siriraj Hospital work for a better future for children with Down syndrome.

In Wang Lang market in Phra Nakhon district, city life hums and throbs and commuters and residents rush about their daily chores. It's a typical everyday scene.

But a short distance away, inside a building, a group of people are captivated by a starkly contrasting scene and a much slower pace of life. On a stage, 18-year-old Nong Fah dances slowly and carefully in front of a group of 50 parents and their children.
The event is the 21st annual meeting of children born with Down syndrome and their parents held at Siriraj Hospital recently.
The father of Nong Fah, a 53-year-old teacher who asked not to be named, and all of the people in the room clapped as she completed her performance successfully.
"We gave her special education, such as physical and speech training, since her birth," he said, to help her delayed physical and mental development.
"I'm glad she is healthy today. It was tough at the beginning and her future worried us."

Thousands walk for kids with Down Syndrome

from ABC 15 by Steve Kuzj:

Ask any parent, and they'll tell you raising a child isn't easy, but it can be especially tough on parents who have a child with Down Syndrome.
Caring for families and children with Down Syndrome is why thousands of people came out to Tempe Diablo stadium in Tempe on Saturday. Everyone went on a walk to raise money for the non-profit group Sharing Down Syndrome Arizona.
The event was massive, with dozens of fun activities for kids and participant.
None of it would have been possible without the tremendous help of organizer Gina Johnson. She started Down Syndrome Arizona more than 20 years ago.
Johnson knows what it’s like to have a child with Down Syndrome; her son has the condition. Every time a baby in Arizona is born with Down Syndrome you're sure to see Johnson there.
She delivers parent packages filled with DVDs, CDs, and books about the condition. Johnson also throws in a little something sweet to the pot.
"It's to educate, empower and give hope, but I give them chocolate and say, 'Whenever you’re sad, eat this, or call me and I’ll send more,'” Johnson sad.
For many parents, Saturday was their first walk. It was chance to share stories, and give each other hope, but most of all it was a time to celebrate the lives of their beautiful children.
“It's just about them and showing them how much we love them. How much we believe in them and find hope in them,” one random mother said.

Read more: http://www.abc15.com/dpp/news/region_southeast_valley/tempe/thousands-walk-for-down-syndrome-kids#ixzz27OJE7kln

Gaps in the Map Survey Released by DSAIA, NDSC & NDSS

National organizations partner to help ensure access to support and information 

Down Syndrome Affiliates in Action (DSAIA), the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) have partnered to ensure that all families have access to support and information from a local Down syndrome affiliate through the "Gaps in the Map" Project. The project's goal is to locate and document all Down syndrome support groups in order to identify what areas are not being served and then explore ways to provide that support to the "gap" areas.

We need YOUR help to make this project a success by doing the following:

1. Complete this BRIEF survey before July 31, 2012 by clicking here.
2. Forward this newsletter to all your friends in the Down syndrome community nationwide! Encourage them to fill out the survey!
3. Tweet and share the survey link with other group leaders via social media!
4. Talk about this project with at least one organization in the Down syndrome community today.
5. Be creative! The more we share this project, the more families will receive the support and information they deserve!

Stay tuned for a variety of fun and cool ways to share this project with your friends and friend organizations. Click here for all the latest project details or visit us on Facebook!

For more information, contact Deanna Tharpe, DSAIA Executive Director, at director@dsaia.org or 701-425-7129 or Allison Wixted, DSAIA Gaps in the Map Chair, at dsagrstepup@yahoo.com or 804-920-9643.

Select NDSC Convention Workshops Streamed Live

from the NDSC:
For the first time ever, selected workshops will be streamed live for families and professionals who are unable to make the trip to Washington, DC. While we expect this year's convention to be one of our best attended ever, we are excited about the possibilities related to extending our reach even more! For a minimal fee, NDSC members will be able to take a peek into the largest gathering of its kind anywhere in the world. Stay tuned for details about the workshops chosen for streaming, and all of the details related to accessing the content on your computer.

Hope Haven Down Syndrome Center's postive approach

from the Florida Times Union by Mary Kelly Palka:

Three and a half hours by car with one stop for a break.

That’s how long it takes the Mezzei family to get from Tampa to the Down Syndrome Center at Hope Haven Children’s Clinic and Family Center in Jacksonville at least once a year.

The Mezzeis believe the trip is worth every minute.

Because once they’re inside the Beach Boulevard center, they get tools that make the rest of the year much easier for their 5-year-old son Matthew, who was born with Down syndrome.

Families travel from down the road and around the world to Hope Haven to get assistance they say they can’t find in their own backyards.

In a society where parents of children with Down syndrome often hear what won’t be, Hope Haven points out what can be. Then it provides resources to the families to help make what once seemed impossible probable.

It’s made the nonprofit so popular that there’s often a wait of nine months to a year to get in for an team assessment focusing on the educational potential of the child.

Although Hope Haven offers a variety of therapies, including physical, occupational and speech, for children who can come in regularly, that’s not what brings the Mezzei family and others from out of town, state or even country. They may have great resources in their own communities, but some families are looking for second opinions and others are seeking additional support.

“We felt we were surrounded by great therapists,” mom Lisa Messei said. “None had specialized knowledge of Down syndrome.”

Laura Watts, the founder and program director for Hope Haven’s Down Syndrome Center, does.

In addition to a background in teaching, Watts is the mother of Jonathan, 24, who volunteers at Hope Haven a couple of days a week. Jonathan was born with Down syndrome.

Watts started the Down Syndrome Center in 1996 as a way to help children in all areas of their growth and development.

“We are strength-based and not weakness-based,” she said.

The idea is to find a child’s strengths and then take them to the next level, Watts said. She wants the parents she works with to understand their children can learn most anything other children learn. They just learn it a little differently and at a different pace.

In addition to Watts, there is another educational consultant, six therapists, a behavioral pediatrician and a behavior specialist. There are no standardized tests. And every child receives different recommendations, depending on their needs and strengths.

The team looks at everything about the child — and the family — that will help the child grow. Sometimes that’s helping deal with behavioral issues. Sometimes it’s helping with problems in the classroom.

For the Mezzei family, Lisa and John were concerned that Matthew had difficulty communicating his thoughts because his speech was unintelligible.

But Hope Haven staff knew through observations that Matthew understood what he was hearing, and he was capable of communicating. He just needed the tools.

Now Matthew uses a computerized device that allows him to answer questions by pushing buttons with pictures, sentences or words. It doesn’t just help Matthew at home; he’s also answering questions in circle time at school, his mom said.

They didn’t feel they were getting the same message about Matthew’s strengths in their own community.

Hope Haven “made us feel he is doing great,” Lisa Mezzei said.

Many parents come to Hope Haven for similar reasons.

“Often, when you have a child who is different, you get a long list of what your kids aren’t doing,” said Royellen Moore, of the Orlando area.

But she finds that the people at Hope Haven are more positive, and they focus on what her 6-year-old daughter is doing.

Much of the Moore’s focus in the early years of their daughter’s life was on her medical needs, including open heart surgery and epilepsy.

So when the family came to Hope Haven, Watts helped them focus on their daughter’s educational needs, showing them what the little girl was capable of doing.

For instance, it didn’t occur to them that their daughter could tell the difference between different types of animals. But when asked to find a frog, the little girl was quick to respond.

“She picked up the frog and brought it to us,” dad Michael Moore said. “Wow. I didn’t know that.”

There’s little doubt in the minds of those who walk through the doors at Hope Haven what makes this place different than any other.

“I think the gift’s Laura,” Royellen Moore said. “She took her personal experience and turned it into a resource for all of us.”

Some make the drive in a few hours.

Some make the trip in a day or two, including from Syria and Kuwait.

And then there are those who decide the trip is too much, and they just move to the area.

Doctors in Brazil told Juliana Eras de Borgia about Hope Haven when she was seeking help for her youngest daughter, 2-year-old Ana Carolina, said her stepfather, Angelo Moneta. De Borgia doesn’t speak much English. Moneta speaks some English, but it’s limited, so he communicated with the Times-Union via email.

The whole family moved to St. Augustine to be closer to Hope Haven at the end of 2011.
Moneta said he has been thrilled with the help Hope Haven has offered Ana Carolina and the rest of her family.

Moneta worried about how he should behave with Ana Carolina, and Watts explained to him what she tells everyone: Ana Carolina should be loved and cared for and educated like every other child.

“We all are happy knowing that Hope Haven Clinic and Mrs. Laura Watts will take care of our princess Ana Carolina,” Moneta wrote.

And he commented that the cost is reasonable. The prices vary, depending on the child’s needs and how many members of the therapy team they see, and there are financial aid and scholarship opportunities.

For parents and guardians, Hope Haven is a place where they can find support, answers and hope. For children, it’s more about adventure, encouragement and fun.

As physical therapist Kris Owen watched one day last week, Andi Wright, 5, of Orlando, climbed a ladder to reach the top of an indoor slide.

Owen wanted to make sure Andi was using the muscles she should — and suggesting ideas to mom Maureen Wright about ways she could help develop the muscles more.

And Andi’s mom wanted to talk to Watts about her transition into kindergarten.

That’s all great, but Andi didn’t care. She was ready to zoom down the slide.

“Ready,” said Owen. “Set.”

And then together, just before Andi started down the slide with a big smile on her face, she yelled out in unison with Owen:

“Go!”

Raising a Child with Down Syndrome: Advice and Resources

from Amy Julia Becker:

When our older daughter, Penny, was diagnosed with Down syndrome at birth, it felt daunting to consider the medical, social, educational, and behavioral challenges ahead. I had no idea how much support and encouragement we would receive from family, friends, and the larger community of other parents with kids with Down syndrome, as well as from dedicated and caring therapists, teachers, and medical professionals. Although we have many years to come, and many lessons to learn as we parent Penny and our other children, here are a few pieces of advice that I and other parents of children with Down syndrome can offer.

It then includes 8 sections with suggestions within each:

1. Learn the Facts First
2. Get In Touch with Other Parents
3. Organize Relevant Information
4. Find Good Doctors, Therapists, and Specialists
5. Put Together Your Village
6. Remember Your Child is a Child First
7. Prioritize Communication
8. Focus on Your Child’s Strengths

Click here to read the whole article on parents.com: How to Raise a Child with Down Syndrome: Advice and Resources.

GiGi's Playhouse

What started as a local Playhouse in a suburb of Chicago has turned into an international phenomenon, spreading awareness and inspiration to everyone it touches. GiGi's Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community!

Programs and Activities:

1. Pre-Natal Diagnosis Support – GiGi's offers accurate and positive information about Down syndrome to families who have just received a pre-natal diagnosis.
2. Open Play – Promotes networking and socializing for families with children of all ages with Down syndrome.
3. Crawlers Program – Helps facilitate and strengthen the skills in children who are at the developmental stage of crawling.
4. Walkers Program – Facilitates and strengthens the skills in children who are beginning to walk.
5. 2 & Under Group – Promotes positive beginnings for families with an infant or toddler with Down syndrome, with a focus on ongoing support and networking for new and current families.
6. Hop, Skip and Jumpers (3-5) – Promotes friendships, social skills and interactive play through creative and educational activities for pre-school and kindergarten-aged children.
7. Playhouse Pals (6-8) – Promotes friendships, social skills and interactive play through structured and educational activities for children ages 6-8.
8. Kid's Club (9-12) – This face-paced program promotes friendships, social skills and communication through creative and educational activities for children ages 9-12.
9. Teen-Tastic – This group promotes friendships, social interaction and communication through a variety of social activities, outings and games for teens aged 13-17.
10. Friday Friends – This group promotes friendships, social interaction and communication through a variety of social activities, outings for adults 18 and over.
11. Daddy and Me – Promotes positive interactions and social networking between children with Down syndrome and their male role models
12. Sibling Time – (coming soon!) Organized group that offers a positive place to share about life with a sibling with Down syndrome.
13. Family Night – This program promotes positive beginnings for new families as well as offers with a focus on positive social interactions among peers and siblings
14. Leaps and Bounds - This contemporary dance class is fun for all ages!
15. Music Class – Each session explores a different aspect of music appreciation.
16. Hispanic Group (Nuestros Angeles) – Provides support, friendship, networking and socializing for Spanish-speaking families
17. Polish Group – Provides support, friendship, networking and socializing for Polish-speaking families
18. Literacy Program – This internationally renowned program teaches and reinforces children and adults with Down syndrome reading, comprehension and phonics skill.
19. Math Program – Students in this program are taught applicable math skills with custom made materials.
20. Skill Builders – Reinforcing school-aged skills, Skill Builders incorporates handwriting, math, social skill development and phonics.
21. Parties – Each Playhouse has parties for …just about anything! Halloween, birthdays, 4th of July, etc. Check your local website calendars!