Hug your child tonight

I am praying for peace for a family tonight.  This family is part of a special group of families.  Our family is also part of this group.  We met online and have "been there and done that" through so many events with our children together.  You see, this special group is for families that have twins, triplets, or more and/or have one or more children with Down Syndrome.  We all originally met on a yahoo group.  Gradually, we all found each other on Facebook and since have a page where we all keep up to date with our children.  We are there to support each other, give advice and just listen.

When our boys were born, I never felt like we really belonged to the "twin" group.  And it was so much different having twins and then having one with Down Syndrome.  One day, when the boys were about nine months old, I found the multiples group online and I finally felt like I had found other folk who could understand some of the challenges we were having as a family.  We have had a a long friendship.  I value that friendship. I love seeing the pictures of my friends children as they grow. We discuss things that work and don't work raising our children.   We even exchange Holiday Cards with pictures of our families every year.  We welcome other families into our group.  They feel accepted.

Yesterday, one of the families posted than Suzanne was going to go in for a procedure.  Later, this Mamma posted on Facebook that Suzanne had a problem under anesthesia.  Today, my friend posted....  "Pray for Suzanne, she is getting her wings.  Fly baby, fly HIGH!  We Love You, Mamma, Dadda and Lindsay!!!"

Hug your child tonight.

Be gentle.

A weekend adventure with Grandma and Grandpa to Jamestown

Will and Davey went on an adventure with Grandma and Grandpa to Jamestown this weekend.  They explored the train museum.  A great day was had by all.

Be gentle.

Shame? Embarrassment? How about awareness?

Awareness.  

According to the Oxford Diction.

Definition of awareness

noun

[mass noun]

• knowledge or perception of a situation or fact:we need to raise public awareness of the issuethere is a lack of awareness of the risks
• concern about and well-informed interest in a particular situation or development:a growing environmental awarenesshis political awareness developed

World Down Syndrome Day is quickly approaching.  March 21.  

I enjoy reading about how people with Down Syndrome are viewed in other countries.  This article caught my attention and it actually is kind of depressing.  How do we change these views?  How to we change perceptions?  

from BBC news;

1 IN 400 CHILDREN BORN IN OMAN HAVE DOWN SYNDROME

By Shaddad Al Musalmy

March 16, 2013

Muscat - 

In Oman, one child in every 400 has Down syndrome. Though these children can develop with proper support, families do not come forward with their condition because of embarrassment. Also, there is a need for more facilities in the country for bringing them to the mainstream.

“There are over 500 children with Down syndrome in Oman but only 165 are registered with The Down’s Syndrome Parent Support Group (DSPSG) because many parents think it is a shame for them to come forward and talk about the condition of their children. One in every 400 children born has Down syndrome here but in developed countries the figure is 1/800 to 1/1,000,” Zuwaina al Barwani, co-chairperson of DSPSG, said.

“Children with Down syndrome crave to be accepted just like their siblings, have unique personalities and are loving and affectionate. They must be accepted within the community. However, we need to make compromises so that their educational needs can be met in the classroom and for this we need proper facilities in Oman.”

According to Zuwaina, every year, the group joins the rest of the world to celebrate the Down syndrome event to seek community support and achieve dignity, equal rights and a better life for such children.

“We will observe World Down Syndrome Day on March 21 with a wide range of activities at Muscat Grand Mall and we would like to encourage many organisations to observe this special day together with the community in order to create awareness in Oman about the condition and that these children are a part of us,” she said. The activities will include awareness lectures, games for children, henna, face painting and much more. “We don't only meet on the World Down Syndrome Day;  25-30 children with the condition meet every Saturday at the Association for Early Intervention Centre for Children with Special Needs, where parents discuss their child's development with a specialist,” Zuwaina said.

Since the reorganisation of DSPSG in 2006 (it was founded in 2003), there has been an increase in the number of children attending the weekly sessions as parents have recognised the benefits of bringing their children to these sessions.

The sessions involve providing specialist services such as physio and speech therapy and special need teacher-parent consultation. On what could be causing the increasing number of such cases, Zuwaina said, “Research was done but never completed. Researchers needed more time but they say the rise could be related to environment, air and water pollution,” she said.

DSPSG is the only group in Oman where the children receive specialist help and parents meet to exchange ideas and experiences. The group works under the umbrella of the Association for Early Intervention Centre for Children with Special Needs with Special Needs. However, it does not receive any financial support from the association.

Be gentle.

My special gift

I received a special gift yesterday.  Today is our anniversary.  Yesterday the boys thirteenth birthday.  You would think I would be excited about a gift the boys received yesterday (which were many, thank you everyone) or something special that my husband did for me today.  But no, it is a much more special gift that I was given yesterday.  I am still in awe.

I need to take a step back and begin this story properly........

I am a typical worried mom back in August as Davey and Will were beginning middle school.  One of my many fears about my babies starting middle school was Davey having to "dress out" for Physical Education.  All the kids go to the locker room and change into their gym clothes before coming outside to participate in the exercise program.  Davey loves to parade around home in his undies (a big improvement from when he wore only his birthday suit) and I was afraid he would do this in the boys locker room while he was changing clothes.  Another bigger fear was that Davey would be taken advantage of or teased in the locker room by the other seventh and eighth grade boys.  I expressed my fears to Davey's wonderful homeroom teacher Mrs F.  She told me not to worry.  She and the physical education staff would make sure Davey had an great experience in his PE class.  OK, I would take their word for it, but follow his progress closely.

First week of school follow up with Davey's teacher Mrs F went well.  She told me that Davey had been assigned a locker next to the office of the PE teachers in the boys locker room.  She also told me Davey had been assigned a buddy to help him "dress out", open his combination lock on his locker in the locker room, and also get dressed back in his street clothes.   This small gesture by the school in helping Davey assimilate into the school and truly be "included" in the middle school experience.

Fast forward to a week ago.  For weeks, Davey has been talking about his "friends" at school and especially his friend Chase.  I mean all the time he talks about all the fun they have at school.  As we got closer to his birthday, Davey said  he wanted to invite Chase to his party.  I said sure but didn't think much about it.  We made party invitations and Davey took them to school and handed them out in his homeroom.  We also invited all of his friends from Special Olympics.  Friday before the party, I asked Davey if he needed any more invitations.  He told me he needed one more for Chase.

Friday afternoon, when Davey got home from school, he brought with him two VERY LARGE balloons that said "Happy Birthday!".  Davey told us Chase had given them to him.  Just amazing.  Davey was so proud of those balloons.  They are still flying high in the living room.

Yesterday, we all piled into the car, went to the park and got ready for the big party.  Guests starting arriving.  We started in on the pizza and got the hot dogs grilling.  Davey mentioned several times that Chase was coming.  And guess what, Chase arrived at the party with his two friends, Chris and Hunter.  These three boys just made me so happy.  All three young men gave Davey a big hug and wished him happy birthday.  Davey was grinning while he was introducing them to everyone.

I had a few minutes to chat with these young men.  They were so polite.  Chris told me Davey has nick named him Tater Tot.  They don't know why, but he is know as Tater Tot by Davey.  Chase told me that they loved being friends with Davey.  They enjoyed watching him make three pointers in PE class.  We all joked about Davey's love for all things Justin Bieber.  Davey is part of their group.

What a great moment for any parent, to meet their friends and realize that they have really nice friends.  But an even greater moment when your child has a special need.  I am so blessed.

Be gentle.

Guess who is thirteen today?

No more babies........  They are thirteen

Happy birthday gang!

Be gentle.

Christmas 2012 memories

Wishing you a joyous season and special times with your family.  May your new year be filled with gentle days and loving times.

Be gentle.

Help the families that had their lives shattered at Sandy Hook

"Newtown Youth and Family Services, Inc. is a licensed, non-profit, mental health clinic

and youth services bureau dedicated to helping children and families achieve their

highest potential. NYFS provides programs, services, activities, counseling, support

groups and education throughout the Greater Newtown area.

ANY DONATIONS MADE TO NEWTOWN YOUTH AND FAMILY SERVICES WILL BE DONATED DIRECTLY TO THOSE EFFECTED BY THE SANDY HOOK ELEMENTARY SCHOOL SHOOTING."

Please visit THIS PAGE to make your donation.

Be gentle.

What are you thankful for?

Happy Thanksgiving.

Take a moment and reflect on what you have to be thankful for?

For me, I am thankful for family, friends, gentleness and peace.

Be gentle.

Happy Birthday David!

Today is my husband's birthday.  I am blessed to get to spend another year with year and our children.  David is the most wonderful husband, father and my best friend.  I love you!

Be gentle.