Friday, March 30, 2012

A Gluten Free Easter

For many reasons holidays can be a tough for us Rett families. Being gluten free does NOT need to be one of those reasons though. Check out our tips for an easy gluten free Easter!

(Please use caution with all candies if your daughter has trouble chewing.)

Filling Easter Baskets:
  • Easter-themed Dove chocolate products
  • Easter-themed M&Ms chocolate products (EXCEPT for pretzel M&Ms)
  • Plain milk chocolate regular-sized Hershey's Kisses in Easter-themed foil wrappers
  • Jelly Belly jelly beans (INCLUDING licorice flavor jelly beans) and all Jelly Belly specially themed Easter packages
  • Necco Candy Eggs
  • Peeps marshmallow treats by Just Born (check the label to make sure it states "gluten-free" below the list of ingredients)
  • Kraft Bunny Mallows and Egg Mallows (marshmallow Easter-themed treats)
  • More gluten free candy ideas here
  • Or better yet, skip the candy all together and buy a special toy instead. Find some ideas here.
  • (Courtesy of the Gluten Intolerance group)
Easter Feast:
Skip the lunch or dinner and opt for brunch instead.

Tuesday, March 27, 2012

Finding Funding for Our Girls

A few posts ago we talked about The National Organization of Rare Diseases (NORD) and discussed how this organization has some resources to help financially with the cost of living with a rare disease.

That got us thinking.

We thought, there must be more help out there. Help for not only rare disease but children with special needs in general so parents don't have to feel like they need to figure out how to grow a money tree!

We did some digging and we're glad we did because we found some amazing organizations and resources that are out there and are willing to help girls and families like ours. We hope that if you are in a tight position and wondering weather you can afford to give your Rett Girl the equipment that you know she needs or pay for the therapy that you know she will benefit from that you will check out these links.

AMS Vans : Provides a list of available grants and other funding available to help pay for a handicap van.

Ability Found: A wonderful non-profit organization whose goal is to empower all individuals with disabilities. Ability found helps to find medical and rehabilitation equipment free of charge to people with disabilities who can't afford it. They use a team approach to accomplish this, working with the client, the provider and the vendor.

The Prayer Child Foundation: The mission of the Prayer Child Foundation is to have a hand in answering the prayers of parents with special needs children and helping these children to have the joys of a normal childhood. This foundation may help fund the request of children ages 18 and under.

The Wheel to Walk Foundation: The Wheel to Walk Foundation is a non-profit organization dedicated to making a difference in the lives of children age 21 and younger with special needs. They help children who experience difficulty obtaining funding from their insurance companies.

United Health Care Children's Foundation Inc.: The UnitedHealthcare Children's Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by the available commercial health benefit plan. This “support” is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans

The United Cerebral Palsy Organization: Click on this link to find your local chapter who may be able to direct you to local organizations that aid in funding the needs of special children.

Easter Seals: Much like the United Cerebral Palsy Organization, Easter Seals has local chapters that may be able to direct you to local organizations that may aid in funding the needs of special children.

The Home School Foundation's Special Needs Children's Fund: Enables financially struggling homeschooling families to provide a quality education for their children with special learning needs.

In addition to these resources you may want to contact your Rett Girl's local Children's Hospital. Many of them offer a list of local resources that may help you with the financial challenges we face. Here is a great link to Cincinnati Children's Hospital.

Or you may want to contact your local Kiwanis Club or Lions Club who have been known to rally around their local special needs kiddos helping them with everything from funding equipment or medical bills to assisting with funding their parents travel expenses to conferences regarding their child's medical condition.

If your Rett Girl is on a Children's Health Waiver or a type of Children's Medicaid you may also want to contact them or check out your state's website to see if there are any special needs funds or resources that you can take advantage of. Here is a link to Michigan's Children With Special Needs Fund.

We hope that you find these resources helpful! If you do find the assistance that your looking for all we ask is that you give us an update - we thrive on seeing our Rett Girls shine!

Monday, March 19, 2012

A Very Special Wish

I remember one of the first families that we met when we were diagnosed with Rett syndrome had a daughter a bit older than ours.  One of the many things they encouraged us to do was to get set up with a wish granting organization.  They had just come back from an amazing trip with their Rett girl and were thrilled with their experience.  It was amazing to me that an organization would grant wishes but also, at the same time, a bit scary.  I sort of thought of those wish organizations as something that helped terminal kids and I was not about to ask my daughter what her "last wish" might be.

Time ticked on and I became more educated to the special needs and medical scene and I realized that wish organizations are not  for "last wishes" rather they are to offer some joy, peace, normalcy, relief and FUN to a child who has certainly gone through enough.  With that bit of understanding and when we believed it was right for our family we decided to take the plunge and register!

Maybe you have thought about giving your Rett girl a wish.  Maybe she has already had a wish granted and your family has amazing memories or are still living with the special gift your child chose.  Maybe you have the same concerns as I did and fear that a "wish" coincides with mortality.  Well, I'm hoping that this blog post gives you some ideas of wishes, introduces you to different wish organizations and eases your fears of moving forward with a wish.
First, where do you start.  Well, of course everyone has heard of Make - A - Wish.  An amazing organization and, as their mission statement puts it, "We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy."  The child must be between the ages of 2 1/2 and 18 years old and have a life threatening condition.  The first step in this organization is to refer a child online or to call your local chapter.  The only people who are able to to refer the child is  the child themselves, their parents or doctor.  To make sure the child is medically eligible their doctor will be contacted.  Once that step is done Make A Wish will contact you to let you know if you are being granted a wish!

There are many organizations besides Make-A -Wish that are committed to enriching the lives of children with life threatening conditions.  When looking into organizations you want to keep a few things in mind:

#1 How involved would you like to be?  There is a local wish organization that is right down the street from us.  They have a wonderful reputation and keep their wish families close long after the wish has been granted.  They have an annual Christmas party for their families and involve them in fundraisers.  If you want to have your family more involved an organization like this may be where you want to look.

#2  How old is your Rett Girl?  Many organizations are set up for children 18 years and under but there are plenty of organizations that grant wishes to adult children as well.  Don't think that you have missed out, you can still give your adult child a wish of a life time.

#3  Is your child even eligible?  A Rett Syndrome diagnosis does not give your child a free wish.  With nearly all of these organizations a form is filled out by your child's doctor that determines if they are medically eligible to receive a wish.  Choose a doctor that knows your child best and let them know in advance that you are thinking about working with a wish granting organization, ask them if they think your child would be eligible.  This way you are less likely to be surprised by the outcome.

#4  Is your Rett girl and your family ready?  I know that with my Rett girl I wanted to wait until she was able to voice her opinion on her own wish.  We got her really consistent with her eye gaze and took lots of time to determine what we thought she really enjoyed and what she told us she really liked and waited until we felt our daughter would be physically able to make this decision.  We also prepared our family, knowing that one of daughters wishes may be a trip that involved the entire family we planned for a year where we were able to get time off of work and be able to get away.  Your Rett girl may want an item rather than trip - if she wishes for a hot tub or a newly designed room or something permanent it goes without saying that you want to make sure that there are no plans to move in your near future.

Watch a video of Mikyla, a Rett Girl, getting her wish to walk granted here

If  your Rett girl and your family are ready to take the next step then the Family Village/ Disability Culture has a wonderful list of Wish Granting Organizations that are organized by location.  This list is very complete but was last updated in 2009.  With the condition of the economy for the past few years it is good to do a reality check and make sure the company you choose is still functioning and is still able to grant new wishes.