Unstoppable

October is Disability Awareness Month.

October is Down Syndrome Awareness Month.

Did you know that October is also Spina Bifida Awareness Month? It is, and because I have an amazing son who happens to have Spina Bifida, I wanted to share some information with you!

* Every day in the United States, an average of 8 births are affected by Spina Bifida or a similar birth defect of the brain and spine.

* Spina Bifida remains the most commonly occurring complex birth defect in this country.

* The root cause of Spina Bifida is unknown and the effects for each person are different.

* Spina Bifida is a multitude of problems that affect the mind, the body and the spirit.

* Advancements in treatment and prevention have opened new doors for those with Spina Bifida.

* While it presents unique challenges, those affected by Spina Bifida are able to attend school, work, raise a family, and spend time with friends just like everyone else.

And as you know if you are a regular reader of this blog, Spina Bifida does not stop Ronnie from being a wheelchair basketball star!!!

To celebrate this month of Spina Bifida Awareness, the Spina Bifida Association hopes to bring to light through pictures the successes of those who live each day with this birth defect. There are a lot of ways in which individuals and families can get involved, and one of those ways is by submitting your vote for the “Celebrate SB,” Facebook photo contest designed to acknowledge the accomplishments of the Spina Bifida community. Voting will be open through October 31st on Facebook. Fans can vote only one time per day during this period on their favorite photo!

Please take a few moments and check out the photos! Then cast your vote for your favorite. In the process, you might just be surprised by the non-limiting nature of Spina Bifida!!

'Knee'ding Some Advice

Ronnie is struggling with his braces and crutches. He has said many times that he wants to walk, and because of that, I ordered the full hip to foot braces and a set of crutches. But as therapy approaches each week, and anytime I tell him that it is time to practice walking, he balks. He will tell me that he doesn’t like therapy and doesn’t like walking, but once we are there, he tells the therapist he likes walking. Teenagers!!

I think the reason he is so torn is that learning to walk is hard. And, in my experience with four other teenaged children, tackling something hard is not their first choice. I need to help him understand that while it may be difficult right now, the end result is something he has really wanted for a long time. Unfortunately, that end result may be well into the future. So there’s that teenager thing again – learning to walk with braces and crutches doesn’t provide instant gratification.

When Ronnie is at school, he uses his wheelchair exclusively. When he is at home, he likes to stay out of the chair and scoot around the house on his knees. He’s very good about vaulting himself up into chairs, onto the couch, or into the bathtub. But when he leaves those places, he also vaults himself onto the floor onto his knees. And his knees are starting to complain.

He told the therapist last night that walking was making his knees hurt. After a thorough exam, the therapist convinced him that walking was not the problem, scooting and landing on his knees was. I am going to get him some heavy duty knee pads – the kind like contractors use when laying floor – but he has some decisions to make.

Does he want to walk around the house or roll around the house? I worry that he will choose rolling and over time, severely limit his options for anything else. And the last thing I want is for him to regret never having learned to walk – a regret this his teenaged self may not realize at this moment.

So here I am asking for advice again. Have any of you faced a similar issue, especially with the braces and crutches, and if so, how did it all play out with your child?

Every.Life.Inspires

Before Ronnie joined our family I knew almost nothing about spina bifida. Once I knew he would be joining our family, I did a lot of research and read some very scary things.

Having been through a lot of equally scary things with both Ashley and Jessica, I knew I was up to the task of being his mother and his lifetime advocate.

I have always chosen my children with special needs. I have approached their adoptions fully aware of the challenges we all would face, and the choice to proceed with the adoptions were always mine.

But what if you were a first time parent - a parent who has just been told only a third of the way through your pregnancy that your child would have spina bifida? What would you do?

The video below may help families answer that question.

The McGinley family struggled to become pregnant. After many struggles and miscarriages, their dream was realized and they became pregnant with twin boys. Just a few short months later, their lives took yet another turn when it was realized that one of the boys, little Elijah, had spina bifida.

The McGinley family, along with other families, have put their feelings, their thoughts, and their journey to spina bifida into the video below. Their efforts, labeled Project Eli (Every Life Inspires) and this special documentary is about parents being prenatally diagnosed with spina bifida.

If you have a child with spina bifida, are pregnant with a child with spina bifida, know someone who has a child with spina bifida, or are just interested in learning more, please take about 30 minutes out of your busy day and watch this video. You could even substitute another severe disability for spina bifida and this video's message will still move you.

October is Spina Bifida Awareness Month

In honor of my wonderful new son, Ronnie, I am pleased to share the following spina bifida awareness information:

Did you know that birth defects occur in 7 out of every 10,000 live births in the U.S.? And Spina Bifida is the most common permanently disabling birth defect? In honor of October being Spina Bifida Awareness Month, the Spina Bifida Association is asking folks to take a few minutes today and get involved in the awareness month by educating loved ones.

The first question many have: What exactly is Spina Bifida? In short, Spina Bifida happens when the spinal column doesn't close completely.

And how many births each day are affected? Well, it's hard to believe, but eight births each day are affected by Spina Bifida or a similar birth defect of the brain and spine. If you think about it, there are currently over 65 million women in the U.S. who could become pregnant and each one of these ladies is at risk of having a baby born with Spina Bifida. So because Spina Bifida occurs during the first month of pregnancy (that's even before most women know they're pregnant!) it is that much more important to take proper precautions to help try to prevent it now.

Okay. So what type of precautions can help in prevention, you may wonder?

Although at this time there is no known cause of Spina Bifida, research has shown that if a woman takes 400 mcg of folic acid every day and before she becomes pregnant, she reduces her risk of having a baby with Spina Bifida or another neural tube defect by as much as 70%! That fact is reason enough to encourage women (and men) to get out there this month and spread awareness.

Families with a history of Spina Bifida should take extra dosages of folic acid prior to pregnancy. Hear one mom's message:



And in honor of October's Spina Bifida Awareness Month, the Spina Bifida Association will also be launching some great new online resources, including:

SB University (SBU) (www.sbuniversity.org), a new online educational program featuring taped sessions from the 2010 National Conference as well as monthly live seminars conducted by Spina Bifida medical professionals from around the country. During Awareness Month, SBU will debut new sessions each Monday.

SBTween2Teen (www.sbtween2teen.org) a new Web site for tweens and teens with Spina Bifida. Complete with blogs, videos, real stories, fact sheets, and an Ask the Expert feature, the interactive site helps tweens and teens navigate the difficult road to adulthood. There is even a social networking component run through Facebook, allowing tweens and teens to interact with one another and build peer-to-peer relationships!

Preparations, a new transition-focused Web site launching in late October allowing parents, caregivers, and clinicians to answer specific questions with regard to a child's developmental milestones. This tool can even help young adults remedy some transitional challenges.

For even more information, tips and resource, you may visit: www.spinabifidaassociation.org

And be sure to join the Spina Bifida Association on Facebook: www.facebook.com/spina.bifida.learn