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December 2011


From my heart to yours2

   

John and Lynn
John, Lynn and Adam Fraleigh

  

"They err who think Santa Claus comes down through the chimney;
 he really enters through the heart."  
~Mrs. Paul M. Ell

 

Dearest Beloved Friends,

 

Each year as Christmas approaches the little girl inside of me gets so excited. I have always believed in Santa, but I do even more so, since I gave birth to my son David. He is the one who reminds me that of all the gifts we can give one another, the greatest of these is love. I know your son or daughter is teaching you that as well.

 

 I want to tell you about something cute that happened at our Westside party but before I do I wanted to make sure I tell you about our upcoming Chapter meetings.

 

I am especially excited for you to come to our January meeting so you can meet my dear friend, Kent Phelps. Kent Phelps(He is an attorney who specializes in Estate planning and Special Needs Trusts. 

 

I asked him if he would be able to give Sharing families a discount for their Special Needs Trusts and he thrilled me when he said he would do them for only $250.00!  So please come to hear this wonderful man. We do videotape our meetings so if you can't attend call our office to get a copy from our Lending Library. 

 

When I was at the Westside Christmas party it tickled me when Brenda Lopez told me she appreciated having him come to speak to their group. To contact him just email him at skentphelps@gmail.com or call him at (480) 686-1238. (Make sure to tell him we sent you!)

 

Each Sharing Chapter has guest speakers according to what the members request. So if there is a specific topic you'd like to learn more about just let your Chapter Leaders know.

 

These dear people serve as volunteers but I know they feel like I do...that even a million dollars could not make them feel what they do when they are with your children!

  

At our East Valley Breakfast with Santa my cute son Luke was our Santa and as always my dear friend Mark Trombino was our Elf!

Mark and Luke 

Mark is an actor, a gifted motivational speaker and the author of the best seller, Life is Short.  His presentations are amazing but you will especially love the one he does for schools about bullying. He will make you laugh and make you cry but he will always inspire and empower those lucky enough to hear him speak.  To contact him you can email: littlemotivator@yahoo.com. His cell number is (602) 421-6314 and his website is www.motivationalsmalltalk.org.



  

I am not surprised Mark is such an amazing person. It has been said "An apple doesn't fall far from the tree." And it probably will not surprise you to find out that Mark's mom, Betsy Trombino is the person who trained me as a "Pilot Parent" over 26 years ago.  She is the one who taught me to be the kind of parent-to-parent contact I'd always hoped to be. I adore her and her son Mark and feel blessed to call them my friends.

 

Betsy Trombino and friends
Lisa Case, Betsy Trombino, Kathy Pastores and Kathy Dumaplin

 

 

 I would like to say a special Thank You to dear Miss Morgan Adair and her friend Cassidy (who are practically professional

Morgan Cassidy
Cassidy and Morgan

photographers) as they helped me take pictures at our East Valley party.  A special thanks goes out to my dear friend, Perry Sevey for the beautiful photos he took.  Please take a minute to email him and let him know just how beautiful his work is.  We are so grateful to him for the precious gift of memories and time that he gives to us every year and never asks for anything in return.  If you need photos for your family, please think of him first as this is what he does for a living.  perry@picturevideo.com.   

 

 

East side volunteers
East side party volunteers

 

I am thankful for the many volunteers on both sides of town.

On the Eastside it was those great young adults from the Church of Jesus Christ of Latter Day Saints and our dear Christy Burke (whose best friend's brother has DS), John Michael (whose twin sister has DS) Jennie Bradfield! And also our dear Rachel Hanzuk, Teresa Adair, Polly Standifird and Jennie Bradfield.  And last but not least, a big thank you to the many volunteers at the Westside Chapter.  I want to thank you all by name but I don't have them!! Please know that you are loved and appreciated more than words can say.   

 

Here's a list of our chapter leaders.  We are so thankful to them for everything they do.     

    

Westside: 

West side volunteers.
Westside Volunteers

Jamie Boyett

Janie Garcia

Kerri Smith

 

Spanish Chapter:

Jennifer O'Connell

Ramona Carrasco

 

Flagstaff: 

Lani Leonard

Sally Tomes

 

Casa Grande:

Helen Alvarez

Rachel Santa El...and Teresa
Rachel and Teresa

 

Yuma:

Donna Smith

 

East Chapter:

Rachel Hanzuk

Gina Johnson

  

 

 

 

And I LOVED being able to go to both of the Christmas parties this year and I have to tell you something that happened that made my day!  

 

At the Westside party Santa was adorable with the kids as was Mark (My favorite Elf!). It was so fun to see how much not only the kids loved Mark but the grown-ups did as well! When the party was over and Mark was trying to leave one little boy was thrilled to see him.

Mark and cute boy

 

 

 

Mark was great and stayed to pose for pictures. Just then my friend (and new mommy to James) Joanie came over and I asked if she would let me take a picture of her and Mark which she did. As she knelt by him I suggested that she give Mark a 'kiss'. She was a little embarrassed but she laughed and obliged me by giving him a little peck on the cheek.

 

kiss
 

 

As always Mark was delightful and after she kissed him he said, "Just don't tell my wife!" We all laughed and playfully Joanie agreed saying, "Don't tell my husband!" It was really sweet.

 

 

Well I had to get in on the action so I said ,"Hey, I want to kiss Mark!"   I gave him a kiss on the cheek as well.

 Gina kiss

During this whole time, there were two older young men (who have Down syndrome ) standing there watching this silliness unfold and laughing right along with us. But then all of a sudden one of the big boys looked at me and while pointing to me said, "I want to kiss you!!!"  

big boys 

 

I thought he was going to give me a little kiss on the cheek as well so of course I said, "Sure!" 

 

gina kiss 

 

 

Well as you can see, I got quite a smooch!!!  

 

All I can tell you is, Boy, I am loved!!!

 

Well dear friends...I hope during this Christmas time you will feel as loved as I do.  xoxo  I wanted to let you know some sad news... that our sweet little AJ Medina passed away.    

AJ 

 

I know that little guy gave his all to stay here as long as he could.  He was so loved by his parents (Armando and Joanna) and his entire family. He was the most popular baby in the NICU and I know the nurses always fought over who got to be his nurse during their shift. That cute nurse Trina almost always won! xoxo   

Nurse Trina 
I am so thankful that Heavenly Father let that amazing little boy come to our world for 58 days! During that time everyone fell in love with him. After AJ passed away and I told David he could see the tears in my eyes.  In his innocence he reminded me that it was okay because now he could be with "Sugar Mama." (David's beloved Grandma Johnson who passed way 2 1/2 years ago.)


Sugar Mama and David 1983
Sugar Mama and David 1983

Grams and David
Sugar Mama and David

 
















I have a feeling David is right...when AJ meets Sugar Mama he will be smooched on and hugged by the greatest grandma ever!


Armando and family
AJ's dad Armando gave the most  beautiful tribute at his funeral saying many things that touched our hearts. But one thing he said stayed in my mind. He said every time we feel the wind blow it was really Aj letting us know he loves us. This past weekend Curt and I were in Flagstaff helping our youngest daughter Emily pack up to come home for Christmas and then to leave in February to go and serve as missionary for our church (The Church of Jesus Christ of Latter Day Saints)


.



As I was carrying some boxes to the car, for some reason  AJ was really on my mind. Then all of a sudden, the wind started to blow. It was so much so that I  even had to pull my coat tightly around me. I just began to laugh and in the air said, "Hi AJ! I love you too!"  Now others might try to say it was just the winter wind, but I know better!


Merry Christmas dear friends! And to our Jewish friends, Happy Hanukkah

All my love,


David's Mom & AJ's favorite Aunt Gina

(aka Gina Johnson)
 
      

 

 In Loving Memory of AJ Medina
October 1, 2011 - November 27, 2011   

     GIraffe kissing baby
 Upcoming Meetings 

 

EAST CHAPTER

 

Special Needs Trusts by Kent Phelps

 

Thursday,

January 26, 2012

7pm - 9pm

 

Mesa Student Services Building 

1025 N Country Club Rd

Mesa, AZ 85201

 

 

Do you  know why it is important for you , the parent, to set up a Special Needs Trust for your child who has a disability?  For the purpose of qualifying for SSI (Supplemental Security Income)  and AHCCCS (AZ Health Care Cost Containment System) benefits, an individual may have no more than $2,000 in countable resources.  Sound confusing?  It is!  

 

Our speaker, Kent Phelps, an estate planning and asset protection attorney, explains all the ins and outs and how do you go about preparing such documents to protect your child's future financial situation.  We encourage all parents, who have a child with special needs ages birth to 99, to come and learn and ask Kent any questions you may have.  If you have done any research in this area you know just how expensive it can be.  Kent offers Sharing Down Syndrome Arizona families a very affordable rate to prepare special needs trust documents.

 

Respite Provided

 

PLEASE RSVP:   info@sharingds.org or call 480-926-6500

 

 

WEST CHAPTER

 

Learning To Teach Your Child How To Manage Their Behaviors

 

presented by: 

 

Ame Brewer

Autism Consultant, Deer Valley School District


Thursday, January 12th, 

6-8pm

Horizon's Community Church

14120 N 79th Ave

Peoria, AZ 85381

 

Join us as we learn from Ame Brewer, an Autism Consultant for the Deer Valley School District who has experience in all areas of special needs and their behavioral issues.  She will explain to us how to handle behavioral issues such as throwing things, tantrums, non-verbal communication as well as behaviors that only present themselves when the child is at school.  She will also answer your specific questions.  Come and learn while you meet other families from your area.

 

Respite Provided

  

RSVP: Jamie@sharingds.org 

 

 

 

 

 

  

FLAGSTAFF

 

Oral Health and Development of Teeth 

presented by:

  

Pediatric Dentist, Jessica Robertson, DMD

 

Thursday, January 19, 2012

 6-8pm

 

St. Pius X Center (Catholic Church)

2257 E Cedar Ave

Flagstaff, AZ  86004

 

 

Pediatric Dentist, Jessica Robertson, DMD, from Around the Mountain Pediatric Dentistry will be presenting to our group.  She will share her knowledge of our children's oral health and development. Please don't miss out on this chance to have your questions answered from a professional here in our community!

 

Respite Provided

 

Please RSVP: Lanistevens@sharingds.org

 

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411 Art Gallery at ASU Invites you to
 
To a Special Reception for Inclusive Communities
 

Friday, January 13th
6 p.m. to 8 p.m

411 Art Gallery located in the
University Center at 411 N. Central Avenue in Phoenix

The exhibition includes more than 100 new and diverse pieces from community and student artists including photos submitted by families from Sharing Down Syndrome Arizona. The artwork focuses on pressing social issues connected to celebrating inclusive communities and the assets of individuals with disabilities.
Brian
This is one of the many photos from Sharing Families in the Exhibit.

 Spotlight on Sharing Families 

Gift From God

 

Matthew PinoBy Marissa Pino

 

      My beautiful son Matthew was born in the early morning hours on Sunday December 9th, 2007. He was perfect in every way possible. With tears of joy running down my face as I saw my first born, I instantly fell deeply in love with him...even more than I already was.  Prior to his birth I did not know he would have Down syndrome.

 

     Sadly, hearing his diagnosis was a bad experience as the pediatrician didn't answer any questions but simply printed a definition of Down syndrome and handed it to me. Thankfully we then went to a dear friend, who was also wonderful Nurse Practitioner, and she helped us in so many ways. She has been seeing Matthew ever since.

 

     Without a doubt, for me being a first time mother and finding out my son had Down syndrome felt heart wrenching and confusing. It felt as if my mind was in so many places.  How thankful we were to have found the perfect person to care for our son.   It's been almost 4 years since that day and each time I look at my son I see a happy, healthy, loving and caring boy.  If only those who told us such negative things could see him now! 

 

     We were told how delayed Matthew would be, but Matthew has achieved every major milestone even before a "typical" child would have.  He sat up at 4 months, danced to music at 5 months, crawled and drank from a Sippy-cup at 6 months. And then as if that wasn't enough, he then said, "Momma"!   His words have been flowing ever since! He started walking at 11 months and I don't mean to brag, but he is a very smart kid who can also work an I Pad better than I.

 

     Matthew has a passion for books (the library is his favorite place) and he enjoys reading time with mommy.  He loves all types of music and loves to play the drums, guitar and piano. He loves hanging out in the garage with his Grandpa, working on HOTRODS! And you never know, my boy might just become a chef when he gets older because he loves his play kitchen and is always making his little sister and me delicious pretend soup, cupcakes and pizza.

 Matthew2

     Matthew's changed my life in so many ways these past 4 years.  For the past two years I've been a single mom and of course my life has had its fair share of down times. I remember a period of time that was difficult with what seemed like endless medical appointments and checkups for Matthew.  After one especially hard day, my kids started crying and as I sat there, I started crying too.  It was then they stopped and started to hug me.  Then Matthew hugged me, telling me, "Ok momma. I love u, No cry". 

 

     I find it ironic that when we chose Matthew's name we did so because it was Biblical name that meant, "Gift from God." We didn't know he would have Down syndrome but without a doubt, Matthew has truly has been the greatest gift I have ever received.

 

     I am so glad that I was referred to Sharing Down Syndrome Arizona, because all the resources that we received from Gina helped in so many ways and the monthly meetings have been so helpful as well. I love that we have play dates and when I get to talk with other parents who are in my same shoes, I know that I am not the only one out there. I am proud to have Sharing Down Syndrome Arizona and their families as my extended family.

 

Sincerely,     

Matthew's Mom  (aka Marissa Pino)

 

 

 

 A Special Request 

Dearest Beloved Friends of Sharing Down Syndrome Arizona,

 

          Over the past 20 years, we have sent out requests to our supporters on numerous times for emergencies or special projects and every time you have come through for us. No matter what the cause, we had faith you would respond and you always did! So I wanted to say "Thank You" for the many ways you have supported the work we do for families who have a child with Down syndrome.   

  

     It's because of your support that we have been able to help over 3,000 families. We've provided the much needed New Parent visits and New Parent Gift Packages to all 6 of the birthing hospitals in Phoenix, established parents support groups all over Arizona including Casa Grande, Yuma and Flagstaff, as we provided educational programs for parents and their families. We've assisted in adoption for some of our sweet children and provided annual Easter and Holiday Parties because as you know, our great kids are the best party animals ever! We helped families in many ways you don't know about including helping parents of older children obtain DDD eligibility.

  

     We do this for one simple reason. When our hearts were hurting, someone helped us. Our mission is to continue to Celebrate Down Syndrome in every way possible. We have been there when life has felt hard for new parents as we let them know they do not walk alone. We have been there and spoken at funerals when children have died. Always we cherish these beloved children.

  

     We hate to end the year off by asking for money, especially when we know so many families who are struggling.  However, that is exactly why we are asking for help. As the state continues to cut funding for programs that help families they turn to other sources.  The calls for help have increased to our office by some 40% this year alone and we never want to turn anyone away!  And as you know, we never charge for any of the programs or services we provide to families who have loved ones with Down syndrome.   

 

So this is why we need your support and it is crucial to this big step for us in our long-term commitment to help families. We re going to hire a full time New Parent Support Counselor, to assist with the booming number of new parent visitation requests we receive each week from all 6 of the major birthing hospitals in Phoenix. This person will be beneficial in many ways:

  1. She will be able to respond within 24 hours of getting the referral.
  2. She will be a mother who has 'been there and understands the natural grief that happens when new parents are told of their newborn's disability.
  3. She will be positive and enthusiastic to bring love and the emotional support parents need most.
  4. You may already know that 92% of mothers who are diagnosed with a baby with Down syndrome abort their baby. I believed this is because parents are told only negative information about their unborn babies. This Counselor will also assist us as we provide much needed In-service training to OB's and geneticists so they can tell newly diagnosed mother's that there is a better way, besides ending that baby's life. If parents do not feel they can care for their child we will let them know about our "Angel Baby Adoption program."

           Our immediate need is to raise $45,000 for this New Parent Support. We are reaching out to you to help us make this happen. I know I am late getting this to you, but if you can donate, there are three ways: donate online at www.sharingds.org, call our office 480-926-6500 or mail us a check dated December 31, 2011. All of it can be a tax deduction, and in addition, up to $400 of it can be a tax credit. *   

  

     I am thrilled to tell you that we have two dear sponsors who will match up to $15,000 each! We will be very grateful for any donation amount you are able to give, as we know it comes from your heart. Your support will help ensure Sharing Down Syndrome Arizona a bright future of continued service to our children and their families.

  

     As we look to 2012, we are excited to see what the future holds. Over the past 20 years we have seen many nonprofits come and go. But thanks to your continued support and encouragement, Sharing has continued to grow as the premier organization recognized by our state as the one who truly provides outstanding parent support services for the families lucky enough to have a child with Down syndrome.

  

     We have not only survived, we have thrived. We are both humbled and honored to work hand-in-hand together with you to make big things happen. Our ability to help the thousands of children with Down syndrome and their families affects our community and it is only made possible through your involvement. When we say that Sharing is all about caring, it is you who help us provide that care.

  

     Thank you for considering sending in a year-end donation toward the New Parent Counselor. It's because of you that we will multiply our ability to help families in need. I am indeed in awe of the mountains you have moved in the past to make things happen for these special families and their children. Tears come to my eyes when I look back and see all that you have done. It is because of you that what began with five families in my home now is over 3,000!   

       I am convinced that together we can move this mountain and acquire the funds needed to get this new person in to help take care of such a great need in our community. Thank you for helping to give a bright future for all families who have children with Down syndrome.

  

With much love,

  

  

Virginia "Gina" Johnson

(aka David's Mom)

Executive Director/Founder

 


*Taxpayers filing as "single" and "head of household" status may claim a maximum credit of $200. Taxpayers that file as "married filing joint" may claim a maximum credit of $400. Taxpayers filing as "married filing separate" may claim a maximum credit of $200. Corporate and /or business checks are not eligible. Check with your tax preparer for more information  
Quick Links

January Parent Support Meetings

(Please RSVP, more info in this newsletter.) 

 

EAST CHAPTER

 

Special Needs Trusts by Kent Phelps

 

Thursday,

January 26, 2012

7pm - 9pm

 

***
 

 

WEST CHAPTER

 

Learning To Teach Your Child How To Manage Their Behaviors

 

presented by: 

 

Ame Brewer

Autism Consultant, Deer Valley School District

 

Thursday,  

January 12th, 

6-8pm

 

***

 

FLAGSTAFF

 

Oral Health and Development of Teeth 

presented by:

  

Pediatric Dentist, Jessica Robertson, DMD

 

Thursday,  

January 19th, 2012

6-8pm

 

 

Resources for Parents

 

AZ Wins with Inclusive Schools 

 

Free monthly programs for parents who have children in public schools.  More info: AZWINS.org

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SEEK Arizona

Specializing in the Education of Exceptional Kids

SEEKArizona.org
 
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Special Olympics- Arizona

 

Athletes inspired to greatness.