Profile Proposition

 

I have a proposition. Let's revolutionize facebook and blog profiles to be more useful to those who love us  if the time ever comes that we need a helping hand. This is not my idea, but a genius one from my dear friend, JeriDawn, a mother of 5 little princesses, incuding Mialee. I'll let her explain:

One night as I was laying in bed, saying my prayers, contemplating life, not sleeping...I considered quite a few people. Some need lots of help and others a little and some I'm not sure what they need. I like to help people, but I have issues with how to help. So, it is my proposal that blogger profiles and facebook profiles should be useful. Really, who cares what kind of music you like? Or movies for that matter? I need useful information...

Here is a little of what I think profiles should be about...

1. What are some of your go-to snacks for kids? What are their favorite things, the ones you always go back to, the ones that are always in your cupboards? How about special treats?

2. If you have had "one of those days" what is your choice way of winding down? What are your favorite comfort foods?

3. Name 3 meals that your family will always eat...pizza? Lasagna? What fruits and veggies will your kids consume?

4. What is your idea of a night on the town? By yourself? With friends? Hubby? Where would you go? Restaurants?

5. Name 3-5 things that are considered "extras" for yourself. Things that you always want, but feel like they aren't a necessity and tend to get swept under the rug when your kids go through a growth spurt and suddenly need 5 new pairs of pants.

6. If you could have a fairy-god-mother, what would she do for you?

Isn't this a wonderful idea?! We do all sorts of preparedness like fire drills, storm shelters, food storage, etc. Why not have information available to people for day-to-day emotional emergencies, those days when we are just down in the dumps, or more importantly if we have something major come up and really need some help. Wouldn't you love if all your facebook friends had this information available so you would know what to do for them instead of feeling helpless? And let's be honest, as a special needs parent the potential for needing a helping hand is a little higher than most. There is no shame in helping others know how to help you.

Okay, who's with me!?

Financial Assistance Resources

I compiled a list of resources I thought were worth sharing with everyone.

These are all resources for funding needs-



The Lindsay Foundation- to assist families with resources necessary to provide medical treatment, therapies and rehabilitative equipment in order to improve the quality of life for their special needs children. (http://www.lindsayfoundation.org/)

Fund it Forward- to ease the burdens of families with special needs children by raising money for adaptive equipment not covered by health insurance. (www.funditfwd.org)

Disability Grants-Help Fund Handicap Vans (www.amsvans.com)

Disabled Childrens Relief Fund-Funding resource provides disabled children with assistance to obtain wheelchairs, orthopedic braces, walkers, lifts, hearing aids, eyeglasses, medical equipment, physical therapy, and surgery. (www.dcrf.com)

The Kaitlin Marie Bell Foundation-Helping Children with Disabilities. They provide financial assistance to disabled children who are unable to afford equipment and/or services they need. We believe that quality of life for a disabled child is a necessity not a luxury. (www.kmbfoundation.com)

The M.O.R.G.A.N. Project-Resources, Equipment, and Funding opportunities for families of parents with special needs/complex needs children. (http://www.themorganproject.org/)

Presidents Choice- This grant for kids is dedicated to helping children who are physically or developmentally challenged. The aim is to remove obstacles that make everyday living extremely difficult and to provide these young people with a renewed sense of dignity, independence, and freedom. (www.presidentschoice.ca)

Do Unto Others

I’m not good at asking for help. There, I said it. I have always had an independent streak and until now, it has served me well. The problems come when…well, when a problem comes. I usually chose to handle things on my own in a low key fashion. Despite the fact that I now blog Austin’s life for the world to see, I am actually a very private person. It’s true.

Simply put being the single mom of a medically complex child is stressful, no two ways about it. Major medical decisions are mine and mine alone. Medical debt is mine and mine alone. Raising this child to be a loving, well adjusted member of society – that's all my doing. Not that the responsibility is all mine, but the day-to-day reality is.

I have to admit that quite often I am overwhelmed. {Not an easy thing for this gal.} I know I am not alone, I know there are other single moms or families struggling to raise a family on a shoestring budget or with overwhelming medical expenses.

Over the past two years, on more than one occasion, support has come from an unlikely source. Total strangers.

Completely by surprise I have been approached by people who have heard of my situation and wanted to offer their assistance. Call it divine intervention, call it lucky, I call it blessed.





Help arrived in the form of a gift card for groceries, clothing, and even manual labor to repair a tornado wind blown fence. In each case the support was a welcome blessing to this “I-am-Super-Mom-hear-me-roar” kind of gal. The best part aside from the actual offer(s), is knowing that the motive is nothing more than to help relieve me of some financial or emotional stress.


Do you have a utility bill that needs to be paid?

Do you have an unexpected and expensive car repair?

Do you have a medical bill hanging over your head?


While I was fortunate enough to have people seek me out and offer me a helping hand; there is no shame in seeking out help for yourself or your family. Organizations looking to help Special Needs families are out there, you just have to look for them.

I have found a handful of resources that you might be interested in checking out for yourself or someone you know that may be in need.


Aubrey Rose Foundation: Grants available to assists with medical bills not covered by Insurance

Snappin' Ministries: Special Needs Parent Support Network, offers financial, spiritual and social resources.

First Hand Foundation: Offers assistance with treatment or equipment needs, based on funding criteria.

Jessica's Hope Chest: A foundation for critically ill children offering financial assistance and counseling.

Modest Needs: A grant based program for families or individuals in financial need.

Most of these programs are privately funded programs and may be income based or have "medical-only" criteria, these are NOT wish granting programs. Also, keep in mind that most of these organizations are available for financial support, as well as emotional support.

Introducing 'Danielle's Foundation'

My pal Keri recently informed me about this amazing site, Danielle's Foundation. It is an awesome 'non-profit resource for families of children with cerebral palsy and brain injuries.' Given my Chloe's issues, this site is particularly helpful! I have spent the majority of my day so far on the site getting questions answered and in awe of this amazing mom who is so willing to help others. Check out the site and read Danielle's story below....


Danielle Lynnette Vick was born on April 10, 2004 in Atlantic City, New Jersey. Because she was born three months earlier than expected, Danielle needed to be hospitalized for the first 8 months of her life. Her doctors were hopeful and said although she had a long road ahead, there was a great chance that she would be a perfectly healthy child.

Like most preemies, Danielle had some respiratory issues, and some problems with her lungs, so she needed a tracheostomy and ventilator to help her breathe. But she showed everyone she was a true fighter and continued to make great progress. She was a happy, spunky, bright-eyed bundle of joy.

Though her development was delayed, at ten months she was at home, full of personality and continued making progress. She was crawling, rolling over, playing, and just full of life! And then, one day, everything changed.

In 2005, three days after her 1st birthday, Danielle had an episode that forever altered her life. Danielle’s brain went a long time without oxygen. Her parents received the heartbreaking news; Danielle had suffered an anoxic brain injury. The brain damage caused her to lose her motor skills and her ability to speak. She also needed a feeding tube, and was completely dependant upon others for care.

Danielle’s mother, Florence, was quickly thrust into a new world where she had to become an advocate for her daughter to help her get the therapies and services she now needed. It became a constant struggle to get Danielle the care she needed, in fact it seemed like every time Florence turned around the therapies, benefits, and resources Danielle needed were just out of grasp, or were denied by the insurance company. Although her life had been drastically altered, and she no longer was the same active little girl, her vibrant personality and the fight in her remained strong.

Sadly, on December 28, 2008, at 4 years old, Danielle passed away due to complications of her anoxic brain damage. Though her time here ended prematurely, her memory will forever remain. Danielle moved, touched and inspired the lives of many in her short four years of life.

One major result of her inspiration was that Florence teamed with her friend and together they began dedicating their time to help other families—families that shared the same struggles, complications, and frustrations as Florence—get the services, benefits, and care their children so desperately needed.

If you are the parent of a child with a brain injury, we know the questions you have, the frustrations you face, and how your biggest goal is to make sure your child lives the best life possible. It’s a little more complicated to get our children what they need, and it takes a little more time, effort, and research, but with the right support and direction, it can be done!

We created Danielle’s Foundation as a place where parents can come to for guidance, resources and most importantly support. We’re hoping you’ll join us in our crusade to provide peace of mind and hope for the future for parents of children with brain injuries everywhere!