At Primary Children's Hospital, when a child is admitted to the PICU, his parents are given a short list of questions to answer about their child. The answers are then made into a fun poster that lets hospital staff get to know your child on a more personal level.

One of the questions asked is if your child has a nickname. It took Reed and I less than a second of contemplation before writing down "Brave Hero" for Parker.

Cause we tend to call 'em like we see them.

So, when I saw the name of The Littlest Heroes Project, I took notice.

The Littlest Heroes Project is a non-profit based organization made up of professional photographers nationwide that provide free photo sessions to our nations Littlest Heroes. This is their way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.

If you have a child, or know a child, who suffers from any type of serious illness we are here to help. The Littlest Heroes Project provides you with a complimentary photo shoot for your hero and family. Please read the information on this site and be sure to contact us so we can help pair you up with a photographer from your area. The whole family … Super Sibs and the Brave Parents are welcome to participate in the session as well!

I was especially touched to read that Super Sibs were welcome to participate in the session as well. Cause sometimes those sibs can feel a bit left out and helpless.

So, go and take a minute…..or 30……… and read about this amazing volunteered, totally free program.

And then sign your Brave Hero up.

We did ours.

You can also find Tammy and Parker hanging out at their other blog, Praying For Parker

Again this morning, I had to explain to the aide on my daughter’s school bus that my daughter is deaf and blind. The explanation came after that aide said in a very helpful voice of normal speaking volume “Hi Ashley, do you need help?” The aide seemed a little annoyed when Ashley did not answer her.

It’s not wholly the aide’s fault that she didn’t know about my daughter, but it sure bothers me that I have to share the same information over and over again with teachers, bus drivers, school aides, and medical facility personnel.

Ashley has been a student in the same school district for 10 years now. She has also seen the same doctors and been to the same hospitals for 10 years also. Isn’t the fact that she is deaf and blind written in her records? What is the point of maintaining all the records that school and medical offices maintain if no one ever refers to their contents?

And, in Ashley’s case, it’s pretty obvious that she is visually impaired – her white cane is a tip off. I understand that it would be more difficult to figure out that Ashley is deaf, but when either I or her intervener is with her and we are using sign language, that is a clue.

I have no problem explaining Ashley’s disabilities to someone meeting her for the first time. I also don’t mind talking about the source of her disabilities or what adaptations and modifications need to be made for her to participate fully in society. But, I don’t think I should have to explain to people in our school district or medical facilities which we have frequented for many years.

Maybe I could use the same response that is often used in the computer industry (my area of employment) when certain people ask the same questions over and over again – RTFM (Read The F*&%$#g Manual).

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

Yesterday Parker had the opportunity to play with a couple of friends, who along with their parents, stopped by for a quick visit.

My heart soared as I watched Our Brave Hero butt hop over to join in the playing that was happening in our family room. Parker has decided that hanging out with friends is all kinds of cool.

As a matter of fact you would have thought that my kid had years of schmoozing under his belt by the way he was handing out air kisses to one and all. Kind of like my other two boys, Parker seems to have inherited the 'plays well with others' gene.

Well. There was the momentary breach of play date etiquette when, after failing to gain one friend's attention, Parker decided to take a stronger approach and huck his popping turtle at this unsuspecting visitor's head.

Yeah. We're working on that Christie. Promise. Sometimes Parker's non-verbal thing can be a real pain in the back of somebody else's head. Opps.

I was totally impressed though by how normal yesterday's spur of the moment play date was. Just three little boys playing. Doing what all little boys live to do. Playing with the same toys that every other little boy around would want to play with.

Which simply goes to show that typical comes in all different sizes, shapes, and chromosomal counts.

Tammy and Parker also hang out at their other blog: Praying For Parker

For the details of how to join the weekly fun, please read What is Special Exposure Wednesday?

Have you seen a precious face? Capture it in a photo and win our Special Exposure Model Search Photo Contest.

SOOC - straight out of camera, no editing - like life.

A moment happens. You plan and it may take place as laid out. But a moment happens, and it is what you have. No take-backs..no editing…no matter how desperately you want otherwise.

Sometimes in photography and life, you simply embrace the blur.

What are you embracing this week?

Melody can be found writing here at 5MFSN every Tuesday in addition to hosting Special Exposure Wednesday. She can also be found at Slurping Life and what i think…and occasionally on the edge of a cliff.

Why as parents do we feel that we need permission from someone in order to take a day off?

As much as you may want to believe you can, you cannot continue nurturing, effective parenting without time off for yourself. Somewhere, sometime when least expected, you will crash…hard…and you will not be able to deal with the simplest of events. I have been in this parenting gig for twenty-seven years; please listen to the voice of experience.

I hear you muttering (maybe even using your outside voice) taking time off from parenting is way easier said than done. Yes it is, but that fact does not negate your need for repose and renewal. Just as intently and diligently as you work in parenting and advocating for your children, you must take the same attitude in caring for yourself. Sure you've heard this before, but this time, listen.

Today I grant you permission to take a day off. If that day cannot be today, hold this permission in reserve and never forget that you may declare a day off from…

* worrying
* caring what people think
* saying the right thing
* fighting battles
* doing research
* knowing it all
* making phone calls
* acting as case manager
* handling the details
* making appointments
* filling out forms
* solving problems
* multi-tasking
* holding it all in
* (add your own)

…and not feel one bit of guilt…ever.

Seriously, put on your monkey slippers and kick back.

Melody can be found writing here at 5MFSN every Tuesday in addition to hosting Special Exposure Wednesday. She can also be found at Slurping Life and what i think…and occasionally on the edge of a cliff.

My son has been showing some nervousness about starting kindergarten next week. Although there is an open house tonight for the students from his class and their parents, I was concerned that it would be too overwhelming for him to really take in much information. After getting some input from the autism consultant last week, I arranged for the principal to show Michael and me around the building privately.

We went down yesterday for our personal tour. He really enjoyed the opportunity to ask questions of the principal and secretary at the school, and we took several pictures of his classroom and the others areas that he will be spending time in this year. And that's quite a few places, since they have a different "special" every day!

After we got home, I downloaded the pictures to our computer, and Michael helped me arrange them into a digital scrapbook program. We added some text so they make a little story he can flip through. In the past, I have written longer stories on the word processor (with or without pictures), but this format worked pretty well for us too.

Here's a link if you would like to view our finished creation.

Please join in and share the creative solutions you have found to your own challenges. For more details on how to participate, click here.

Find out more about Trish
Read Trish's weekly column
You can also find Trish at her blog, Another Piece of the Puzzle.

Adopting a gluten-free and casein-free diet presents a challenge to most home cooks. Fortunately for us there are many web resources available, providing tons of information, advice, and yummy recipes to sample. Here are a few worth checking out:

GFCF Diet: www.gfcfdiet.com –this online support group has an excellent directory, featuring support groups, lists of acceptable and unacceptable foods, diet counselors, tools, and products.

Autism Network for Dietary Intervention: www.autismndi.com –this website features many articles related to autism research and diet, lists of doctors and nutrition counselors, support groups, and FAQs about the diet.

Gluten-Free Goddess: www.glutenfreegoddess.blogspot.com –Karina Allrich, a painter and creative cook, created this blog after finding out about her numerous food allergies (bless her heart). She takes some of the best food photos I have ever seen, and her blog has recipes catering to a variety of dietary needs.

Aprovechar: www.aprovechar.danandsally.com–Sally Parrot Ashbrook posts a variety of different recipes for those with celiac disease and other food sensitivities. I particularly love her focus on local and seasonal ingredients.

Gluten-Free Girl: www.glutenfreegirl.blogspot.com-–Shauna James Ahern is actually the person who inspired me to start my own food blog. After being diagnosed with celiac disease, she overhauled her way of eating—and changed her life. Shauna includes dairy ingredients in some of her recipes, but they are easily modified to accommodate casein-free lifestyles as well. And Shauna is one fabulous food writer.

TACA: www.talkaboutcuringautism.org –Fellow 5 Minutes for Special Needs contributor Trish told me about this site in an email, and I'm so glad she did! There is a lot of information about the GFCF diet on this site. In fact, they even have a guide to going GFCF in 10 weeks. What's great is that they also have a list of GFCF-friendly foods that are available in supermarkets. Thanks Trish!

"It took me four years to paint like Raphael, but a lifetime to paint like a child."

~Pablo Picasso

Welcome to Magic Marker Monday! If you haven't heard about Magic Marker Monday yet, click here and then hurry right back…

One of the best things about having a five-year-old is the opportunity to remember how to see things through the eyes of a child. I look at this picture of Jacqui's and my heart just smiles. She tells me that this is a picture of a rainbow unicorn and the unicorn's friend, "the giant green swallow." I love that she can imagine such fantastical things — giant green birds, towering flowers, unicorns that sparkle with all the colors of the rainbow, and smiling suns.

I asked her if the princess was her, and she gave me an incredulous look and said, "Oh, 'course not Mom! She has black hair, not brown hair like me. Dat's jess some uhvvver little girl playin' princess dress up — but not me." Honestly. Pay attention, Mom.

What was I thinking?

What about you? What has your little artist been up to lately?

Want the Magic Marker Monday button code? Click Here!

Find out more about Michelle
Read Michelle's weekly column
Join Michelle here on first Thursdays for the Beyond Ordinary Blog Carnival
Questions? Please feel free to email Michelle at childlif[at]gmail[dot]com or come and visit her at In The Life of a Child

Parenting children is not an easy job.  Parenting children with special challenges adds more complications to the task.  Parenting children with chronic or life threatening medical conditions is frightening. 

While we as parents need support and education, we must not forget the fact that our children do, too.  Whether physically healthy, living with special challenges or struggling with health issues, children need to understand the importance of caring and compassion.

A "caring-and-curing" website, Generation Cures is a new free online community for tweens created by Children’s Hospital of Boston as an innovative way to educate kids about the importance of caring and compassion while raising funds for pediatric medical research.

Although children represent 20 percent of the U.S. population; only a small fraction of our national research funding is allocated to pediatric illnesses. There simply isn't enough funding to find cures and better therapies for suffering children. As a global leader in pediatric research and one of the nation’s top children’s hospitals, Children’s Hospital Boston founded Generation Cures to try to make a dramatic difference.

The really cool and different thing is how they are going about it. They have created a safe online experience that offers educational digital content to kids and their families for free. The site’s online puzzle-adventure games, animated web stories and "behind the scenes" videos have been designed by experts to help parents teach their kids about altruism and to inspire them to know they can make a difference in the lives of other people.

The secret is that it does all this on the "kid terms" – in a fun, cool and understandable way. Additionally, the content teaches kids about medicine and science and is a great resource for parents.

Generation Cures is currently in Beta status, but will be adding more and more content over the coming months. I wanted to give you this preview into what Generation Cures is doing in hopes that you will check out the site. 

While there is never a charge to use Generation Cures, the hope is that the families who enjoy the site will make a gift to Generation Cures. The collective giving of this growing online community will advance the work of doctors and scientists at Children's Hospital Boston who are dedicated to discovering life-altering cures for childhood diseases and illnesses around the world.

Please visit Generation Cures.  Make it better.

Melody can be found writing here at 5MFSN every Tuesday in addition to hosting Special Exposure Wednesday. She can also be found at Slurping Life and what i think.

Just who is this sweet blonde cutie pictured with her equally lovely Mom? Let's find out!
Tell me a little about yourself and your family.

My name is Lori. My husband and I have been married for 10 years and have 2 beautiful little girls. I have a degree in Health Science Education and was a teacher before I had my girls. I love being a mother. It hasn't been easy, but I love it. I enjoy reading, hiking, walking, teaching, music, dance (watching it), and playing with my children. Our family enjoys the outdoors, swimming, playing games and just being together.

Tell me more about daughter’s disability. When did you first learn of her disability? Was it at birth or later?

Our little Myah was born with a rare chromosome deletion (7q22-31.1). When she was born, she was little but we were told she was a healthy baby girl. When we brought her home from the hospital we began to realize she was not. After 9 months, extensive testing, much illness and worry, we finally received a diagnosis.

After the first shock and hurt wore off, we decided we needed to move forward and give Myah the life she deserved. We have been trying to do that ever since

How did you go about making the decision to write about your daughter? What do you personally get out of blogging about her and her issues?

I have been very private about my daughter, but lately I have felt very alone on this journey. I decided it was my responsibility to share her story (our story). She is such a bright, beautiful girl who teaches us so much, I feel she is a gift I can share with others. I also need others. I need to know we really aren't alone in all of this, and I am learning that daily.

It's also therapeutic to advocate for my Mya. I hope someone will learn or gain something from her and her life. Since I've strated blogging I feel like I belong to a 'special club' with people who really understand me, my daughter, and my family. Thank you all.

How has your daughter's disability affected you as a person and as a mother? What did you do right? What do you wish you had done differently?

My daughter(s) have re-defined who I am. I have gained so much from having Mylah. Some of it is wonderful, and some is not . I used to be a very carefree, laid back girl. Having Myah has given me so much worry and anxiety, and I've become much more serious than before. I don't really like that part so I am slowly trying to find a good balance between a fun, carefree mom and a good caretaker for Myah. I've also had to learn the hard way who my true friends and loved ones are, and the truth has hurt deeply.

I wish I would have reached out to others earlier. I needed support. I needed friends and the friends I had (and much family) just couldn't relate anymore. I would have also enjoyed Myah more. We were so busy with therapy, doctor appointments, more therapy, illnesses, more therapy, feedings, more therapy…..that I rarely took the time to sit and enjoy my sweet baby.

What do you want other parents fighting the same fight to know?

I've said the words, 'I can't do this anymore!' and I've said them many times. But the truth is, somehow I DO do it. There is always another day…a new day.

The alternative to having Myah is NOT having Myah. I would not trade her for the world. She is ours for a reason, just like your child is yours for a reason…and I think the 'reason' is so much greater than any of us can imagine. Be sure to visit Myah and her mom!

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.