Monday, December 9, 2013

You've Got a Story to Share!

The best way to raise awareness is to share the real lives of the individuals living it. GHF has made it easy to share the journey of your little bee by either sharing their life journey, their "bee-ography" of course, or a smaller introduction through a "Meet the Bees" customized collage. Details are below:

Bee-ography Submissions can be sent to Ali via email. This is simply a template to help guide you along the storytelling trail, feel free to share as much or as little as you'd like. We have found that these stories tend to truly pull at the heartstrings of those reading and really are most effective at enlightening individuals to the truly amazing lives these little bees live. There is no better way to raise awareness! And rest assured that your story will be edited for ease of flow, so even those who question their ability to write will find the published version to be a beautiful tribute to their child's amazing journey...

1)      Describe your pregnancy?  Was child diagnosed in utero? Any complications with pregnancy?  Any suspensions from doctors as to what may have caused the diagnosis?  What information did you get from doctor?

2)      What type of support did you get from doctors, family, friends, social  workers, etc….

3)      After you child was born, what type of surgeries and medical interventions were needed and at what age did the surgeries occur?

4)      What impact has your child had on your life?

5)      What type of information do you wish you would’ve had after diagnosis?

6)      What activities does your child enjoy?  Do they like certain toys, eating certain foods, comfort are they comforted with certain people.

7)      Any other pertinent information you would like to include?  Include as many pictures as you would like. 

If you're not nearly as long-winded, as myself, answer a few short questions and see it come alive in a collage introducing your bee to our audience. Brings their photos to life with the things they love best... another amazing tool for raising awareness of the possibilities that exist for these children! Details are below:

SHARE YOUR BEE WITH THE WORLD, send your submissions to Katie via email.

 To submit your bee for our upcoming "Meet the Bees" weekly posts on the Global Hydranencephaly Foundation's Facebook page, please provide us with some basic information. The "Meet the Bees" post will include any child that has (or had at one point) received the diagnosis of hydranencephaly. We want to share your bee with the world, and, coincidentally, change the perception of hydranencephaly! We would love to include any and all angel bees as well! 

 -Child's name. Please let us know how you would like your child's name to appear on the collage. Nickname? Perfect! Anyway YOU would like it listed is fine with us! 
-Picture or pictures. Please include one picture of your bee to have featured. If you would like to send additional pictures, we will try our best to include them in the collage. 
-Child's birthdate and primary diagnosis. If you aren't comfortable sharing this information with the public, it is okay. If you would like to include any additional diagnoses we will try our best to include any additional information in the collage. Also, if you have an angel bee we can include their angelversary if you wish
-Child's favorite activity or toy. Again, include as many toys or activities you wish. What does your child enjoy doing? Any special memories? 
-Favorite Color. This will be the color the collage is based after. In general, we will have blue for boys, pink for girls, or a bee theme. If you wish to have a special theme for your child, please request it! 
-Child's Webpage. If your child has a CaringBridge, Blog, or webpage you would like to include please give us the link. We will incorporate it into the collage in some way.
-Anything else to make the collage your bee's. Feel like we're missing something? We will try to incorporate anything into the collage to make it perfect for your bee! 

In addition, please make sure you sign the photo/video release form, found at our family resource network on Facebook, to allow us to post the collage on the Global Hydranencephaly Foundation's sites and blog. We look forward to sharing your bee with the world!

"We are lonesome animals. 
We spend all of our life trying to be less lonesome. 
One of our ancient methods is to tell a story 
begging the listener to say-and to feel- 
‘Yes, that is the way it is, or at least that is the way I feel it.’ You’re not as alone as you thought." 

~John Steinbeck

Saturday, December 7, 2013

Bee Compassionate


"No one is born hating another person because of the color of his skin, or his background, or his religion. People must learn to hate, and if they can learn to hate, they can be taught to love, for love comes more naturally to the human heart than its opposite."

~♥ Nelson Mandela

Tuesday, December 3, 2013

BUZZ: Happy Heavenly Birthday!


Toy-FILLED Tuesday!

This is only a small portion of a great guide for differently-abled kids! And many kudos to Toys "R" Us for publishing this information to accommodate ALL kids (with notes in parentheses, from myself, to cater to the unique gift requests of our little "bees"): 

Selecting a toy for a child who has a disability? Here are the questions the play experts at the National Lekotek Center ask when choosing developmentally appropriate toys for kids with special needs. Use these questions to guide you in making the right match between the child for whom you're buying and the toys in the Toys"R"Us Toy Guide for Differently-Abled Kids.

1. MULTI-SENSORY APPEAL (my all-time, numero uno rule for all times: give your child something to feel, something to see, and something to hear!)
Does the toy respond with lights, sounds or movement to engage the child? Are there contrasting colors? Does it have a scent? Is there texture?

2. METHOD OF ACTIVATION (each child has their own strengths and weaknesses; some having more purposeful movement in their hands, others in their legs, and even others with their heads; play to those strengths and teach them through immediate reward in response to that action to continue their purposeful movements!)
Will the toy provide a challenge without frustration? What is the force required to activate? What are the number and complexity of steps required to activate?

3. PLACES THE TOY WILL BE USED (this is especially true for higher-dollar items; think, "how many different uses will this toy have?")
Will the toy be easy to store? Is there space in the home? Can the toy be used in a variety of positions such 
as side-lying or on a wheelchair tray?

4. OPPORTUNITIES FOR SUCCESS (think out of the box when selecting toys! One of our favorites, for example, are "space blankets" which are generally found in first aid kits and used mostly during camping trips and rescue missions: yet, there is no right or wrong way to utilize this and it's become a huge hit)
Can play be open-ended with no definite right or wrong way? Is it adaptable to the child's individual style, ability and pace?

5. CURRENT POPULARITY (a great option is to learn how to turn "regular" toys in to switch activated toys; this helps recognition of familiar toys from favorite tv shows and you'll be impressed with how much your child shows preference of their likes and dislikes!)
Is it a toy that will help the child with special needs feel like "any other kid?" Does it tie in with other activities, like books and art sets, that promote other forms of play?

6. SELF-EXPRESSION (don't be afraid of messy toys! Making messes also makes memories, which also equals a fun learning opportunity for your child!)
Does the toy allow for creativity, uniqueness and making choices? Will it give the child experience with a variety of media?

7. ADJUSTABILITY (be sure the toy will be easy to see, hear, and interact with; as well as tolerable, as in not startling or obnoxiously annoying to the rest of the household!)
Does it have adjustable height, sound volume, speed and level of difficulty?

8. CHILD'S INDIVIDUAL ABILITIES (while a stuffed animal is an easy option for a child with hydranencephaly that seems "difficult" to shop for, it doesn't offer much challenge to their abilities; don't be afraid to ask what things the child CAN play with and remember, again, to think outside of the box for things that otherwise may not be considered "toys": window clings, sensory boxes full of beans, pom poms, rope lights, etc)
Does the toy provide activities that reflect both developmental and chronological ages? Does it reflect the child's interests and age?

9. SAFETY AND DURABILITY (above all else, consider safety; children with hydranencephaly often continue to bring items to their mouths for exploration or display movements that are uncontrolled at times... be on the lookout for challenges that could injure the child or be a choking hazard, as well as looking at the washability factor!)
Does the toy fit with the child's size and strength? Does it have moisture resistance? Are the toy and its parts sized appropriately? Can it be washed and cleaned?

10. POTENTIAL FOR INTERACTION (ask yourself if the child will actually benefit from the item, or if it is just for "looks" or will not be interesting to others to play with along with the child... the best gifts are oftentimes the least expensive items that turn in to fun for everyone!)
Will the child be an active participant during use? Will the toy encourage social engagement with others? 

The toys featured in the Toys"R"Us Toy Guide for Differently-Abled Kids have been selected and evaluated by the National Lekotek Center, a nonprofit organization dedicated to making play accessible for children with disabilities. For assistance in selecting toys or play activities for a child who has disabilities, please visit the Lekotek website at