Guest Blogger Post

Posted on July 18, 2016

I’m not one of those people. You know the people I’m talking about and you may even be one yourself. The, “Can I speak to your manager?” people; the “everything is not ok,” people; the—god help us—“no, I won’t lower my voice,” people. I’m not necessarily saying there’s something wrong with them, but there is a distinctly uneasy feeling I get when confronted by one of these people. [1] My fellow Type-B folks are also familiar with this feeling: the sweaty, kind of first-date, feeling without all the fun parts; the not-sure-where-to-look searching gaze, with which you find yourself marveling at a houseplant leaf, or the price tag for some strange cooking appliance that you’d have to attend culinary school in order to know how to use, or searching for shapes in the acned surface of a popcorn ceiling. Frankly it’s a terrible feeling and the whole world seems to breathe a sigh of relief when any such incident is over, and yet you’re still left with a compound of emotions, because while you always seem to empathize with the one getting berated, it’s always with a touch of jealousy for the one doing the berating. In the end, they generally get what they wanted, or are given something in return for their trouble, and deep down in your still somewhat quivering guts, you realize that even though that’s what it takes to get what you want, it is almost insurmountably difficult to act in such a way if you don’t have that particular gene tucked away within the folds of your DNA; in short: if you’ve got it, you’ve got it; if you don’t, you don’t.

I don’t have it. Landis, my son, does.

These things start off simply and innocently enough, and it always seems to begin with the word, “no.” Spoken with a multitude of pitches, volumes, and inflections, and accompanied by all manner of hand gestures and body language, this one word can become a defining characteristic not only of a child’s personality, but also a parent’s adopted style.[2] If one considers themselves an indulgent parent, the number of “no’s” per day can easily end up turning one to the more authoritarian side of things. While most parents, and grandparents, and non-parents, and, pretty much everyone, really, are quick to dismiss these constant and unvarying monosyllabic outbursts as “phases,” or “just being at that age”[3], I submit there is a point at which the “no,” becomes part of who that child is. Or, put better, the type of No, is what really defines a person.

When I say, “No,” most times[4] it comes wrapped in an apology, either spoken or not. The squinted eyes, upturned lips, wrinkled nose type of, “no,” that isn’t so much stated as allowed to eke through my teeth. When Landis says no, it’s firm and direct. There’s no mistaking what it is. As a parent this can be a difficult thing to come up against. The authoritarian parent in me demands obedience; the indulgent parent in me attempts to let him have his say. I grew up in a time when children were still popped in the mouth for speaking rudely or out of turn, and hauled off to bathrooms to come back bleary-eyed and sore in the backside for having perpetrated particularly grievous offenses. And while these are things I will simply never do to Landis, there is the still the knee-jerk reaction to lash out and demand that he conform to my rules for no better reason than I am the parent. This is a constant battle, waged pretty much daily between my ears, and fueled by the older generation’s constant and heirloom type possession of the mantra of “kids these days”, as well as my own very real observations of “kids these days.” The one part of me says that what made me what I am today— a respectful, polite, and generally responsible human being—is due to my strict military up-bringing. [5] The other part of me–after a few years of therapy, reflection, and self-study—has come up with the same thought, only from a different angle. What made me what I am today—an easily cowed, too quick to agree, people-pleaser—might just be due to my strict up-bringing.

What if my previous statement is incorrect and we’ve all got it? Or, at least, were all born with it in one way or another? What if that spark of rebellion, of defiance, that essential and Platonic, “No,” was right there all along, and the circumstances by which we were raised either kindled it or smothered it? What if, given the right environment growing up, I could be one of those people who send back their plate? Who demands a manager when a refund is denied by an associate? Who tells a school that the needs of my child will absolutely be met, because not only does he deserve it, but that it’s his right? And what if, by my choices as a parent, I am directly contributing to Landis’ ability to do that for himself?

Landis was born with Spina Bifida[6] and because of this requires care above and beyond the typical child. Unfortunately, because the world is not necessarily built with handicapped or disabled people at the forefront of thought, the population into which he’s been born is one that is largely marginalized[7]. This realization seems to become clearer the older he gets.  As he grows and his needs become more specific and complex, it will not only be up to me and my wife as his parents, but also up to him, to ensure that he gets everything he needs in order to survive and to thrive. He will need his “No,” in order to get that.

In the last year or so my wife and I have come to the understanding  that Landis may be considered by some to be a “difficult,” child. He’s outspoken about his opinions, will absolutely tell you when he’s dissatisfied, and is not easily talked into things. However, we have also come to the understanding that that type of ferocity, the indignation that drives a person to put their foot down and demand what they want is indispensable, and for Landis, I think, it should be considered an asset. And while the difficulties as he grows older of raising a stubborn and mutinous child are very real and will probably only get more intense, they are far outweighed by how those same traits can and may help him to become the best human being that he can possibly be. And while I’d prefer a few less “No’s” and a few more “I love you, Daddy, you’re the absolute best and Mommy is bringing home Chinese food, and can I just sit here and snuggle with you the rest of the night?”; for Landis to become his own person, a real person, is all I can truly ask for.

[1] Or, for that matter watching someone being confronted by one of these people. And really just generally being in the general vicinity of these people when they really get to going.

[2] With the advent of 21st century research and developmental psychology, the typology of parenting styles has becomes as much a part of pop culture as it has serious discourse (just google “Helicopter Parenting” for one example). Internet memes aside, however, it is a topic of important self-study and parents can find themselves losing hours taking quizzes and researching different types, which range from the rigidly scientific: “Propagative Parenting/Concerted Cultivation”; to the decidedly not, a la “Dolphin Parenting.” Have fun with that one.

[3] I’ve heard “that age” can go all the way to a child’s mid-20’s. Older parents are more than welcome to correct me if I’m wrong. Anyone? Please?

[4] “Most times” meaning when not in a direct parenting role.

[5] Both of my parents were not only military, but were also police within the military, engendering a kind doubly-pervasive paranoia that, to a growing boy, can pretty much squelch even the thought of rebellious action. “No,” was not word I got to say a lot. At least not out loud.

[6] Specifically “Lipomyelomeningocele,” where the spinal cord is open, but covered with a fatty mass that must be excised fairly soon after birth. The typical Spina Bifida issues are common with kids born with this type, (i.e., hydrocephalus, chiari formations, the need for bladder and bowel management, as well as orthopedic difficulties). Landis, while affected uro-and-gastrologically, and required to wear an AFO brace on his left leg, has not had any symptoms related to hydrocephalus.

[7] One of the most interesting things I have found in my experience being part of the Spina Bifida community is that, while huge leaps have been made in accessibility, they are only considered for the very smallest groups of users. If you’ve ever wondered how handicap-accessible the world is, get a group of two-dozen people in wheelchairs together, and see how long the bathroom line gets.

I Could’ve Missed The Pain But I would’ve Had To Miss The Dance

Posted on August 19, 2014

Today’s post is by SBACFL member and guest blogger, Nicole Small.  This is her fifth guest post.

When you are told that your child has a disability such as Spina Bifida, there are choices that you can make. Like anyone who is expecting a baby, you will be faced with three options. You can keep the baby yourself, terminate the pregnancy, or give it up for adoption.  I personally believe that one who  gives birth to a disabled child, has been chosen for that privilege by a higher power who knew you would be capable of doing all that is needed for such a child.

Having a child with Spina Bifida comes with lots of concerns and sleepless nights, and questions about your child’s ability to fulfill his hopes and dreams.  Every child is capable of living life to his fullest potential, tho of course there will be specific adjustments necessary for the disabled child. I would not choose to give my disabled child up for adoption, because I would always regret that I gave up on my child without even trying.

The purpose of this blog is to encourage those parents who are given a child with Spina Bifida.  It is okay to seek help to guide you through this life long journey. No one should be scared because your child has special needs.   Someone from above knew you were strong enough to take on this task  of life, or what I like to call “the dance.”

When making your decision as to what you will do if told that your baby has Spina Bifida, I urge you to consider my own experience as a person with that diagnosis.  Yes, I have Spina Bifida,  but it doesn’t have me! I do not let it determine how I choose to live my life.  When I was growing up, it did have a greater influence in what I could do because of the surgeries and other necessary medical needs.  But as I became an adult, now nearing 25yrs old, my disability does not define who I am.

The reason I decided to begin blogging about  Spina Bifida, is that I hope by sharing my experiences, others who go thru similar difficulties will be encouraged to keep pressing on to reach their own goals and desires. Yes, things occasionally do come up to remind me that I have a disability.  But I quickly find ways to resolve the issue and move on.  Everyone will face challenges, but we can choose to face these issues head on and continue to keep pressing on to victory. I could have given up and missed a lot of pain, but that would have also caused me to miss out on a bigger thing I call “the dance ” (life).

FIVE RULES I LIVE BY BECAUSE I HAVE SPINA BIFIDA

Posted on April 23, 2014

Today’s post is by SBACFL member and guest blogger, Nicole Small.  This is her fifth guest post.

 

1.       Over my 24 yrs of surgeries, and in my everyday life, I’ve come to realize that everyone is different. Because you have a somewhat similar situation to someone else, that doesn’t necessarily mean that your journey will be a carbon copy of the other individual’s experiences.

2.       Always trust your instincts; you are the one who best knows your body.   You are the only one who has been living in it your entire life.  Take others’ opinions into consideration, but the ultimate decisions you make should be up to you, because you are the one who has to live with the resulting outcomes.

3.       Adapt, adapt and adapt. God made you this way for a reason, so do not dwell on a certain situation for too long.  Remember, ‘if at first you don’t succeed try, try, try again.”  God wouldn’t have made you this particular way if He didn’t think you were up to the challenges you would face.  Yes, living with a disability such as Spina Bifida can be a challenge at times, but learning to adapt in our own particular circumstances can make our challenges easier to conquer.

4.       Surround yourself with positive people. If people leave your life for a particular reason, then they were not meant to join you on your amazing journey that we call life. You are probably wondering why I said amazing, because amazing and Spina Bifida do not usually go into the same sentence.   The answer can be found in #5.

5.       You can CHOOSE to make your life amazing by purposely doing things that suit you and your situation. People will  guide you to do things their way because that’s what they think is best for you.  Be careful who you listen to for advice, and make sure you believe they are the ones who are looking out for YOUR best interest, and really listening to what you think and how you feel.   If they are meant to be in your life, they will never leave your side even when you go in a different direction from the one they advised you to take.

Life’s a Dance

Posted on February 17, 2014

Today’s post is by SBACFL member and guest blogger, Nicole Small.  This is her fourth guest post.

 

Congratulations Mom & Dad, you have recently welcomed your new bundle of joy into this big wide world! You have been given the news that he/she has a birth defect called Spina Bifida. To most individuals this news may become as a shock.  I am here to tell you that everything will work out in due time. There are going to be tough roads ahead along with tough decisions you’ll have to make for your child some you may not agree with but those decisions that you make will shape your child into the bright individual that they will become later in life. I know right now nothing makes sense to you because everything is everything is snowballing out of control but have no fear things will calm down sooner rather than later. The key to keeping your head above water and staying calm for your child is to not only educate yourself about what your child is going through and what may follow for him or her what else is important is to lean on loved ones, when you are having a difficult day and I am sorry, there will be difficult days ahead they are the ones you need to turn to. Fortunately when you look back on the years you will notice that you had more good years than bad.  Sometimes you need to relinquish control of your life and let your son or daughters medical team take the reigns and guide you through this long winding road that is called life with a special needs child. Every parent wants to be that strong support system for their child and you can be at times but there’s other times where you need to just let go yourself and allow yourself to break down and once you’ve finished breaking down pick yourself up and dust yourself off and say to yourself “I can do this” because that’s true, you can do this. God gave you this child for a reason and that reason is because he knew you were capable of raising a beautiful strong human being regardless of their inability because the truth is none of us are 100% perfect we all have something wrong with us. No one expects you to learn about your child in one day it will take your whole life time so it’s okay if you make a few mistakes here and there you can always be the leader sometimes you have to learn to follow and God will put things into place for you at the right time you just need to sit back, relax because he’s always in control even when you don’t think that he is. Remember he placed you with son or daughter for a reason and that reason is because he knew before you even knew that you were strong enough to carry your child through a bright and successful life regardless of his or her circumstances.

The Stereotype Of Paraplegics – Socially Unaccepted, Forever Accepted By God

Posted on December 4, 2013

Today’s post is by SBACFL member and guest blogger, Nicole Small.  This is her third guest post.

 

 

Growing up, I often wondered what I would become when I matured into an adult, because during my childhood, I rarely saw people like me in public. I thought it might be the specific circumstances of my being at a particular place at a particular time.  But then I would go back to these various places (restaurants, movie theaters, etc), and still wouldn’t see anyone like me, who had to deal with a disability. This made me think…”Is it because people just find it difficult to go out into the world and face the obstacles caused by their specific disability?  Or is it because they are afraid of the stares and rejection that they would face from society?” I would very much agree  that people in my situation find it very difficult to be socially accepted in today’s world. Do I fault those people who glance at me with a puzzled look upon their faces? No, because they don’t know what it’s like to be me. The only person who know what it is like to be disabled, is obviously the disabled person themselves and their family and friends. Growing up, I would have jumped at the chance to educate those people who were too scared to ask what was wrong with me. Being asked that question would have opened up a line of communication and an opportunity for them to learn something new about someone they had never met before. During my childhood, it was very hard to deal with the stares from strangers because even I was trying to figure myself out.  I always knew I was different from my peers; I couldn’t run onto the playground during recess or do specific activities during PE.  I learned to become at peace with this because I knew I was made this way for a specific reason.  It has taken me 24 years to figure out how to deal with what I was given, because I had to deal with more than my disability  and everything that came with it.   I also had to deal with everyone around me, who didn’t know me or what my capabilities were. They just saw a little girl in a wheelchair, and thought I was hopeless and helpless and would stay that way for the rest of my life.

 I am here to tell you not to believe what people think of you if they don’t know anything about your personal life.  If they have no value in your life, then their opinion or what they think of you should be of no value to you!  Just brush it off and go on your way, because “what doesn’t kill you only makes you stronger.”  God surrounds us with people who understand us, and also puts people in our path to whom we can teach something new. We are the only person who can fulfill that job for Him. God puts each person on this Earth for a specific reason!  He has a plan for each of us, though it may take some time to come to terms with what our mission in life is. I feel that God’s mission for me in life, is to help others who are like me.
 My challenge to all of you in this next year, is to take a few minutes each day to reach out to someone you don’t know, or know well, and share something about yourself with them. It only takes minutes to make an impression on someone, and that impression can make a world of difference in their day, or even their life. Make it a positive difference by putting a smile on someone’s face. Even though they haven’t said so verbally, we never know who may be having a difficult day and really need us!

Tips for Applying for Disability Benefits with Spina Bifida

Posted on November 27, 2013

Today’s post is by guest blogger and writer for the Social Security Disability Help Blog, Ram Meyyappan.

 

Social Security Disability (SSD) benefits are available for children and adults who suffer from Spina Bifida, if the disorder makes it impossible to work as an adult or prevents the attainment of developmental milestones or participation in activities of childhood.

Decide Which Program Your Should Apply For

The Social Security Administration (SSA) has two different SSD programs you will want to investigate:

Determine Whether You or Your Child Medically Qualifies for Benefits

Spina Bifida applications can be approved for benefits under a number of different circumstances, since the disorder causes a range of complications. The SSA will take into consideration the combined effects of spina bifida and may consult multiple listings in the Blue Book, which is the manual of disabling conditions and the evidence necessary for proving disability.

You may also wish to take a look at the various listings in the Blue Book that may be considered. The Blue Book can be found here: http://www.ssa.gov/disability/professionals/bluebook/

A few if the listings you may need to review include:

  • Musculoskeletal – Section 1.00, for adults, and 100.00, for children
  • Neurological – Section 11.00, for adults, and 111.00, for children
  • Intellectual Deficits – Section 12.00, for adults, and 112.00 for children

Gather the Necessary Medical and Financial Information

Before beginning your application for benefits, you will need to collect as many of your medical and financial records as possible. You will need the information contained within those records to thoroughly complete your application. You will also need to provide the SSA with copies of as many of your medical records as possible. This will lessen your wait for a decision on your claim, as the SSA will not need to request all of your records from your various healthcare providers and financial institutions.

File the Disability Application

To apply for benefits on behalf of a child, you must interview with an SSA representative, who will fill out the application for you during the appointment. The interview will be held at your local SSA office. To schedule your appointment, call 1-800-772-1213.

If you are applying for disability benefits for yourself, then you can do so at your local SSA office or electronically, via the SSA’s website here: http://www.ssa.gov/pgm/disability.htm

Appeal if Your Claim is Denied

You may wait several months for a decision on your claim, and it is possible you will be denied benefits. If you or the child for whom you are applying for benefits is denied, you can appeal the decision. You will have to file an appeal within 60 days of receiving your denial notice.

You should strongly consider hiring a disability attorney or advocate if your claim is denied. Your attorney will be able to analyze why your claim was originally denied and will be able to correct any errors that were made.

 

 

If God got us to it, he’ll get us through it.

Posted on August 5, 2013

Today’s post is by SBACFL member and guest blogger, Nicole Small.  This is her second guest post.

 

 

It was in August of 1989 when my mom had given birth to me. This is also the day when both my mother and father received the news that their newborn baby girl had Myelomeningocele. Up until then they thought everything would be normal like it had been when my mother delivered my brother 8 years prior.

Right after my birth I was air lifted to All Children’s Hospital in St Petersburg, Florida, so the lesion on my back could be repaired. This is also when my VP shunt was implanted. I was then sent to the Shriner’s hospital in Tampa, Florida, for further observation due to the severity of my Spina Bifida.
At the time of my birth, my parent’s had never heard of Spina Bifida and were at a loss and felt helpless. All they wanted to do was “fix me” and make sure I would be healthy. The physicians at Shriner’s hospital stepped in and reassured my parents that even though I had a tough road ahead of me, I would be okay. They did tell my parents that because of the severity that I may not live through the night, but the next day came and the next day followed, and I was still here.
The doctors and nurses told my parents that as I grew older, more specifically when I turned the age of thirteen, that I would no longer be here because my lungs and heart would be punctured due to the way my spine was curved (from scoliosis). My thirteenth birthday passed and then my fourteenth, and my parents realized that no matter what the doctors had told them, I would be able to live a full life despite my being paralyzed.
My life growing up was not a bed of roses, but no one’s life is perfect. During my school years I ran into some difficulties. Learning disabilities and frequent hospital stays meant I had to miss out on school assignments. This caused me to fall behind, but I never gave up. It was always one of my goals to finish school and go to college. In 2010 I earned a career diploma in Medical Coding and Billing.
Throughout my life my parents have stuck by me through the good, the bad and the ugly. They never once let me see them break down, and they never let me feel sorry for myself. They knew I had a difficulty road ahead of me with lots of bumps along the way, but my parents and my older brother were along for the ride the entire way. My parents never once gave up on me. No matter what was put in front of us, we faced it together head-on, tackled it, and came through the other side better people.
I think of Spina Bifida as a blessing, I do not know where or who I would be if I wasn’t born with this disability. It has definitely made me a strong person. I’ve never felt the need to ask “why me?” My parents have sacrificed from day one by working around the clock so that I could have the best life possible. I am happy to say that today, I have the best life I could ever ask for… I can make memories with my family and share my story with others. I want to provide that little ray of hope for someone who may not understand that having a disability should not get us down. Be happy to be alive and Carpe Diem, because you only live once!

Don’t “Dis” My Ability… Embrace My Abilities!

Posted on June 29, 2013

Today’s post is by SBACFL member and guest blogger, Nicole Small. Nicole contacted our office wanting to be an advocate for people living with spina bifida. She submitted this post about her experiences.

 

 

My name is Nicole and I am about to turn 24. I have Spina Bifida… more specifically, Myelomeningocele with Hydrocephalus.

 

When I was growing up, I didn’t really have that many friends that I could relate to or who could relate to me. I felt that it was because of my disability. My parents and my older brother were the only people who I could turn to for guidance and advice on things, but they really did not understand what I was going through with my disability or just life in general.

 

I found it very difficult to succeed in school, both because I had a learning disability and because I was in and out of school due to check-ups or having yet another surgery. This made it hard to make friends. In addition, when I would have a complication from my Spina Bifida they would make fun of me.

 

When I was younger, I felt that other children either didn’t like me or did not have the same interests because I was in a wheelchair. I felt that people who saw my wheelchair automatically thought I could not do anything in life whatsoever… that I would just be in a wheelchair and have someone take care of me for the rest of my life. Granted I do have the help of my parents, but it really is not 24/7. As I am getting older I am learning that people just do not have the knowledge about Spina Bifida or are misinformed. All they see is a wheelchair. But it is more than just a chair! We are strong human beings because of what we have had to go through both medically and socially.

 

Over the past year or two I have really embraced my abilities and have tried to figure out ways I can help others learn more about Spina Bifida. I have found great support groups via Facebook. The Spina Bifida Association of Central Florida is also a great outlet for those of us who have Spina Bifida because of the sense of community. We all know what the other person is going through, and we can lend a shoulder to lean on and ears to listen if needed. It’s a great place to make friends with individuals who share a common interest. We need that community to provide a safe social outlet!

 

 

  • Support Florida families affected by spina bifida.