Prince Evan's Parent Network

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e-mail prince-evan@prince-evan.net

 

Prince-Evan.net Calendar!…

To see the calendar, go to: cafepress.com/downdownbaby

Please "stop by" our store and browse the other uniquely designed merchandise available from Down Down Baby! for friends, family, educators, etc.


Local Resources

Down Syndrome Support Groups
Several parent support groups meet regularly throughout Indiana.
Childcare is available with advance registration.
To find a group in your area and for more information, contact:
Down Syndrome Indiana at (317) 925-7617.
E-mail: info@dsindiana.org

The Arc of Indiana
107 N. Pennsylvania Street, Suite 800
Indianapolis, IN 46204
Tel: (317) 977-2375
E-mail: thearc@arcind.org

Autism Society of America, Indiana Chapter
4740 Kingsway Dr, Suite 7
Indianapolis, IN 46205
Tel: (317) 695-0252
E-mail: info@inautism.org

Crossroads Rehabilitation Center
4740 Kingsway Dr
Indianapolis, IN 46205
(317) 466-2008
Easter Seals Crossroads is a community resource working with children and adults with disabilities and special needs and their families to promote growth, dignity and independence.

First Steps
To assure that all Indiana families with infants and toddlers experiencing developmental delays or disabilities have access to early intervention services close to home when they need them. This is accomplished through the implementation of a comprehensive, coordinated statewide system of local interagency councils called first steps.

Location:
402 W Washington St, Rm W386
Indianapolis, IN 46204
Family & Social Services Administration,
Div. of Family & Children, Bureau of Child Development
Phone: (800) 441-STEP
FirstStepsWeb@fssa.in.gov

Ann Whitehall Down Syndrome Clinic
Riley Hospital for Children at IU Health
702 Riley Hospital Dr., Rm. 1601
Indianapolis IN 46202-5200
(317) 274-4846, (317) 274-4955

Down Syndrome Clinic
St. Vincent Hospital Medical Genetics
8402 Harcourt Road #731
Indianapolis IN 46260
(317) 338-5288

Información en Espańol


HAVE YA HEARD MAGAZINE: an online media outlet for artists and athletes with special needs

Zyonair's Unlimited, LLC is a non-funded online media outlet and parent company of HYH (Have Ya Heard) Online (magazine, radio and tv) dedicated to promoting and supporting and promoting artists and athletes with special needs. HYH Online offically launched in January of 2005 and re-launched in August of 2005. HYH Online Radio and TV, both are due to launch in January 2006.

Owned and operated by Ms. Yvonne Pierre who is the proud mother of two boys Zyair and Zyon. Her youngest son, Zyon was born with Down syndrome. Both of her sons are the inspiration behind the company's name and mission.


News and Advocacy

THE CHILD KING DVD (Click here to see the Movie Tailer)

"The Child King is a holiday tale filled with life lessons and life experiences all of us will value." -- Exceptional Parent Magazine

When little brother, Jarret (Will Kellem) expresses doubts about the existence of Santa Claus, his older sibling, Jeremy (Peter Johnson), a teenager with Down syndrome, takes him on a journey to the North Pole to prove Santa is real.

The Child King feature-length movie offers a wonderful holiday soundtrack performed by popular recording artists such as Martina McBride, Willie Nelson, Jessica Simpson, Randy Travis, Brian Setzer, Aaron Neville and Vince Gill. Comes shrink wrapped and ready to watch!

The Child King
DVD Color;
1 hr. 24 mins
Price (includes shipping): $18.95

 

MY BROTHER - THE MOVIE

Two African American actors w/Ds star in the movie, "My Brother". Donovan Jennings, who has Down syndrome, plays the lead role -- one of the brothers, young James. The actor playing the same character as an adult, Christopher Scott, also has Ds. When he's not starring in movies, Mr. Scott is a teachers' assistant in Houston, TX.

“My Brother”, The Movie is available on DVD! You can get a copy from Amazon.com

The actors who play both the young and adult brothers in this movie are EXCELLENT! The movie also stars Vanessa L. Williams, Fredro Starr, Nashawn Kearse, Rodney Henry Jr. and a guest appearance by Tatum O'Neal. Please spread the word about this movie.

ADVOCATING IN MULTICULTURAL COMMUNITIES

Children with disabilities, chronic health conditions, or developmental delays are born into families of every culture and ethnic background. We are not serving our children's best interests when our local parent groups, advocacy organizations or district wide school meeting audiences do not reflect the diversity of our communities.

Ethnic outreach and inclusive practices go beyond sending information and meeting notices out to newspapers and organizations that serve individual multicultural groups.

Advocates can make regular efforts in including fathers, grandparents and siblings by making arrangements for male speakers, offering childcare and age appropriate entertainment, having targeted topics and presenters from multicultural organizations, and planning social get-togethers where panels and organizations can offer services to their specific cultural communities.

We need many voices raised in advocacy for our sons and daughters who have special needs, as well as their nuclear and extended families. Reaching out to families who have not participated in the regularly scheduled activities of our advocacy groups has the potential of moving opportunities forward for all our children.

Providing a point of access to information and support for all ethnic and cultural communities is a natural extension of our general advocacy for families and brings in wonderful resources for those who are already active.

Many organizations and advocacy groups serve the diversity of their communities well by providing ethnic outreach, information in several languages, translators, multilingual staff and volunteers. They have already found that the benefits far surpass the effort to introduce and welcome those who have not been traditionally included in community organizations.

Families from multicultural backgrounds often have the same questions and concerns as everyone else in an established advocacy group, with some additional concerns that may be specific to the culture or family. A frequent question from bilingual parents is whether children with developmental disabilities like Down syndrome can learn two or more languages, how to teach them both, and how this might affect their general acquisition of language and ability to communicate. Looking into such questions is delightful and interesting.

Thank you for your interest in including families from multicultural backgrounds - the more inclusive we are in advocacy, the more inclusive our communities will be for all our sons and daughters.
http://www.bellaonline.com/articles/art11304.asp

SPECIAL NEEDS PLANNING QUIZ

1. Do you or your spouse have a vision of how your child will live if both of you are not
around?

2. Have you identified a guardian, conservator, or trustee for your child?

3. Do you have a complete understanding of Supplemental Security Income (SSI)
or Social Security Disability Insurance(SSDI) government benefits?

4. Have you begun setting aside money for your special needs child?

5. Do you have a written Letter of Intent?

6. Are either special needs child(ren) or non-special needs children being excluded from your will?

7. Do you have a special needs or supplementary trust set up to preserve
government benefits?

8. Have provisions been made to fund these trusts with assets or insurance?

9. Have you coordinated your special needs planning with other relatives?

10. Have you done everything possible to protect your child’s financial future?

11. Have you planned where your special needs child will live if you are not
around?

12. Will your child be able to earn enough to care for himself or herself?

13. Will your child have adequate health insurance?

If you are not satisfied with all of your answers or would like additional information, please feel free to contact MetDESK® Specialist Nancy Cunning, CFP at (317) 574-2930, or by email ncunning@financialpg.com. Or please visit our website www.metlife.com/desk.

Metropolitan Life Insurance Company
200 Park Avenue,New York, NY 10166
00922VGH(exp1207)


 

 

 

 


Official Down Syndrome Indiana logo apparel and items are now available at:

http://www.companycasuals.com/dsindiana/start.jsp

 

 

Join the Minority Family Down Syndrome Network

e-mail prince-evan@prince-evan.net

 

 

Down Down Baby! online store


Products uniquely designed to celebrate diversity and promote Down syndrome awareness and inclusion.

 

 

 

Parents of African American Children w/ Down syndrome:
• Network on Facebook!
• Network on Twitter @MFDSN

 

 

 

 

 

October is
Down syndrome
Awareness Month!

 

 

 

Save Babies From Premature BirthNovember is
Prematurity
Awareness Month!

 

 

 

 

Buddy Walk® on Washington

The NDSS Buddy Walk® on Washington is an annual two-day advocacy conference that brings the Down syndrome community together to advocate for legislative priorities that impact the lives of people with Down syndrome and their families. For more information, see: Buddy Walk® on Washington

 

WORLD DOWN SYNDROME AWARENESS DAY
March 21, 2013. For more information, go to worlddownsyndromeday.org

 

BEST BUDDIES INDIANA "FRIENDSHIP WALK"
Sunday, April 28, 2013

The White River State Park Canal

Join other Best Buddies Indiana supporters and participants as they raise awareness and funds for Best Buddies Indiana high school and college programs at the 2013 Best Buddies Indiana Friendship Walk on Sunday, April 28, 2013. The event, which will be held along the White River State Park Canal, includes a 5K competitive run/walk and a 2.6 mile non-competitive walk/run.

For additional information and to register, go to: www.bestbuddiesindiana.org/walk.

 

INDIANAPOLIS MARCH FOR BABIES
It's America's favorite walking event! When you walk, you give
hope to the families of babies born too soon or sick. The
money you raise supports programs in your community that
help moms have healthy, full-term pregnancies. And it funds
research to find answers to the serious problems that threaten
our babies. We've been walking since 1970 and have raised
an incredible $1.8 billion to benefit all babies. The Indianapolis
event takes place Saturday, May 11, 2013.
For more information, go to March of Dimes - Indiana.

 

THE 41st Annual NDSC CONVENTION
July 19-21, 2013
Colorado Convention Center, Denver, Colorado
For more information, check out the NDSC website. En Espańol

 

THE ARC US ANNUAL CONFERENCE
August 2-5, 2013 at the Hyatt Regency Bellevue on Seattle's East Side
in Bellevue, WA. For more information, go to www.thearc.org

 

2013 DOWN SYNDROME FAMILY CONNECTION BUDDY WALK®
Takes place in Bloomington, IN. Date and place TBA. For more details, go to www.downsyndromefamilyconnection.org

 

2013 DOWN SYNDROME INDIANA BUDDY WALK®
Takes place on Saturday, October 12, 2013 at Celebration Plaza, White River State Park, Indianapolis, IN. For more details, go to www.dsindiana.org

 

NATIONAL INCLUSIVE SCHOOLS WEEK
December 2-6, 2013. For more information, go to InclusiveSchools.org

 

TASH 35th ANNUAL CONFERENCE
December 11- 14, 2013 in Chicago, IL. For more information, go to www.tash.org

 


Legislative News and Updates

NDSS ADVOCACY ACTION CENTER
For current National action alerts and information bulletins, click here

For The Arc Indiana local action alerts and legislative updates, click here.

 

NDSS, LETTERCASE AND OTHER PARTNERS CELEBRATE THE NATIONAL DISTRIBUTION OF A NEW DOWN SYNDROME PRENATAL BOOKLETTE

New York, NY (January 27, 2011). The National Down Syndrome Society has joined forces with Lettercase, an independent non-profit clearinghouse of information about genetic conditions, in an effort to ensure that expectant couples learning about a diagnosis of Down syndrome receive accurate up-to-date and balanced prenatal information. An updated edition of the prenatal booklet titled, Understanding a Down Syndrome Diagnosis, will be available on January 31, 2011, including a nationwide distribution of 10,000 complimentary copies funded by the National Down Syndrome Society and the Joseph P. Kennedy Foundation.

The revised booklets were created with input and consensus from both the medical and Down syndrome communities, including the American College of Medical Genetics, the American Congress of Obstetricians and Gynecologists, the National Society of Genetic Counselors, the National Down Syndrome Congress, and, of course, the National Down Syndrome Society. To see the complete article, Click Here


Tips From The Therapist

Some of our contributing Therapists have shared with me that they take their cue from the parents on how much to interact with them during therapy sessions. The Therapists shared that generally parents who ask to be present at sessions, ask questions, are actively engaged in the session, etc. are more likely to want a high level of interaction with the Therapist. However, if parents "disappear" during the session, never ask questions, etc., the level of interaction with the Therapist is much lower. So... if you were wondering how to become more involved in your child's therapy session -- be actively engaged in the session, ask more questions and/or ask the Therapist show you what activities you can do with your child until the next session.

 

Doesn't it always look easier while the therapist is there? Evan's PT, Melissa, always comes up with ways to make therapy "home work" a little more fun! She is a firm believer in using every day items in therapy. Here, Melissa is using "walking sticks" and a scooter board to help Evan walk across the floor. The sticks are easy for Evan to hold, and the scooter board makes it easy for Melissa to move with him. Evan can also use the sticks to keep his balance when stepping up. My favorite part of this exercise is that I can walk behind Evan holding the sticks at the top while he's holding on at the bottom -- no more back pain from bending over and holding is hands while he walks, (other older parents will appreciate that as much as I do).

To make the walking sticks, you just need two dowel rods (you can purchase them at any hardware store). Paint the rods something fun and decorative that reflects your child's personality. You can purchase the scooter board at Target or most toys stores. If you can' find a scooter board, you can use a rolling gardening bench. You can finds those in the gardening section at Walmart, Target, Lowe's, etc.

 


Show n' Tell

Another great discovery! While getting Evan to crawl was fairly easy, we had such a difficult time finding something to motivate him to walk! He had the mechanics down, but just didn't seem that interested. One day, a friend told me about shoes from China that squeaked and how kids just loved walking in them. Knowing how much Evan loves noise, I searched the internet and there they were - Pip Squeaker Shoes. I ordered two pairs - one to fit his bare feet and one to fit over his orthotics (Yes! They come in wide and extra-wide.) Evan put them on for the first time in a PT session and, of course, took eight independent steps right away! He's been on his feet every since then. One of the best things about them is that the squeaker is in the heel of the shoe, so to get them to squeak, the child has to walk heel-to-toe. You can find Pip Squeakers at www.pipsqueakers.com and at amazon.com. Lots of styles and colors!


The WubbaNub™ is designed to keep the pacifier conveniently placed to infant. Soft plush brings soothing comfort and security. Vibrant colors are stimulating and captivating. The WubbaNub™ is also an asset helping in the development of hand-eye coordination.

  • Birth (Full Term) to 6 Months
  • Latex Free Medical Grade Silicone Pacifier
  • Soft Comforting and Soothing Plush Toy
  • Stays Close to Baby
  • No Pacifier Cords or Clips

Evan's WubbaNub was a life saver! It was easy for him to hold and was key in him learning to later hold his bottle and self-feed.

 

 

 

 

 

This is a Bumbo Seat. It did wonders helping Evan strengthen his muscles to sit up. It is a European product that is just now making its way to the US. I shared it with one of Evan's therapist, and she has shared it with other parents. You can get it locally from Babies' Secret Unique Baby Products 317-733-8892. The Bumbo Seat is now also available at Target, Walmart, Meijer and Babies-R-Us.

 

 

 

I have always tried to be careful when buying Evan’s toys (most of his are Little Tikes), but considering all the toy scares lately, this may be another good option. They have a lot of great items to supplement therapy.

www.novanatural.com

Nova Natural Toys and Crafts is a small, family owned business in Shelburne, Vermont. Nova has all sorts of Eco-friendly, natural toys, from rattles and teethers to blocks and puzzles.

Nova's Philosophy: Nova Natural was created 18 years ago out of a desire to provide families and teachers with a wide variety of natural products, which are conducive to creative and wholesome living. We offer finely crafted toys that inspire imaginative play, beautifully illustrated children's books, a wide range of parenting and craft books, non-competitive games which successfully combine action and challenge with co-operation and compassion and natural craft and art supplies to create your own works of beauty.

According to the philosophy that guides Nova Natural, each toy should be age-appropriate in form and in function. Toys should further the child's inner development allowing children to express moods and feelings freely and have an 'open-ended' quality, without the limiting, predetermined play which can come when toys are too formed or too fixed in their function. A simple toy allows the child's imagination, full play. For example, a doll with only suggested facial features can do anything imaginable, laugh, cry, talk, etc. Toys should strengthen and encourage the child's fantasy life so that a child can submerge himself in play, in the world of myth and fairy tales, live outside his day-to-day experiences, imitating adult life with housekeeping toys and through pretend play. The child is able to solve challenging situations when he becomes a rescuing hero with his fire engine will be the adult able to resolve difficulties in the office, laboratory or factory, and 'rescue' the work situation. 'Play prepares the future, and playthings and the play environment should give opportunity for this.' (Joan Salter, The Incarnating Child)

 


Got drool? Get Bandit Bib.
"Bandit Bib™ is a small stylish baby bib that looks more like a fashion accessory. It is 100% cotton and made in the USA." I have found that it is perfect for "big boy" Evan who still struggles with tone around his mouth. He can wear it school and it does not look like baby bib, but like he's making a fashion statement.

 

 

 

 

Prince Evan's Buddies

 


PRINCE JASON
http://groups.msn.com/minorfamily



PRINCE DAVID



PRINCESS ZOE


Click here to see “Gabriel’s Story” a Beautiful Testimony To a Father’s Love for His Son with Down Syndrome.

 

 

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