I haven’t written for this blog in a long time. So many things have been happening in my personal life that has made it difficult to write every day. However, today there are many things I would like to address.
- Though many things are related to Spina Bifida, not EVERYTHING is! Kids fall, scrape their hands, legs, knees, feet, etc. but that does not mean that you need to wrap your child up in bubble wrap before they go out to play. Whether your child has a disability or is able bodied, it will happen. As a parent myself, I want to protect my child as much as possible, however I know things will happen. No matter what you do, nothing can prevent accidents. You just have to pick your child up and have them try it again. They will learn how to adapt, improvise and overcome any obstacle that they may face. Sometimes, parents can be the ones to hold their children back, even though it may be because of good heart-felt intentions. Do not concentrate on their disability concentrate on their ABILITIES!!! If your child is active and mobile, you should encourage that by strengthening their muscles, including legs, core and arms. This will benefit your child throughout their lifetime.
- Not everyone with SB has a learning disability, even AB people have them. Please do not tie everything up in a little bow and blame it all on SB. If you do not encourage your child to push past their disability and overcome obstacles, how are you preparing them for the real world and what obstacles they will face as adults? Learning disabilities can be overcome by teaching alternate ways of thinking and looking outside the box.
- Independence is the key to successful people, whether they have a disability or not. Holding a child, teen or an adult back from being independent, whether partially or fully, is not helping your child succeed. It is inhibiting them and giving them a crutch to lean on for the rest of their lives so they can continue to say “I can’t” without even attempting to try. Even an “I tried” is better than an “I can’t”!
- Public forums, social media, and other venues are a great way to communicate with others that have disabilities. However, it can be a detriment too. While they are great to see that other people are going through similar issues, remember the information that people give you in your situation is not gospel. Unless they are a professional in the field of medicine, education, psychology, etc., understand that it is their opinion. We all know what they say about opinions!!! Also, a lot of the information is incorrect or not up to date. Especially when it comes to SB. Even medical professionals have a hard time with the relaying correct information to their patients. So second and third opinions from medical professionals are very important. I personally cannot tell you how many doctors I have fired due to this exact issue.
- Last, but definitely the most important, no matter what you are going through, there is a light at the end somewhere. We may not see the bigger picture at the time, however there is one. Learn from your struggles and disappointments. If we are not learning, we are not growing mentally, physically, psychologically, and spiritually. All of this impacts how you handle situations and relationships!!! Push through the hard times, because there will be easy times ahead!!!!
Understand I am saying all of this, not to criticize anyone, however to encourage you to be the best you can be! This is nothing I have never encountered myself, so it does come from a place I have been before and sometimes go back to, however I have learned to push through the hard times and fight. I will not back down, I will not tell you it is easy, I will not lie to you or sugar-coat anything. I am honest and raw.
Shuffle on my friends!!!!!
Couple of things I have noticed recently on Facebook that is bugging the hell out of me and I would like to rant to get it off my chest!!!
I am a part of some “support groups” for specific medical conditions that I have, however people in these groups define support in a totally different way than I do and the way Webster defines it! So that being said, here is Webster’s definition of support:
1: to endure bravely or quietly: bear
2: a (1): to promote the interests or cause of
(2): to uphold or defend as valid or right :advocate <supports fair play>
(3) : to argue or vote for <supported the motion to lower taxes>
(2) : to act with (a star actor)
(3) : to bid in bridge so as to show support for
c : to provide with substantiation : corroborate <support an alibi>
3: a : to pay the costs of : maintain <support a family>
b : to provide a basis for the existence or subsistence of <the island could probably support three — A. B. C. Whipple> <support a habit>
4: a : to hold up or serve as a foundation or prop for
b : to maintain (a price) at a desired level by purchases or loans; also : to maintain the price of by purchases or loans
5: to keep from fainting, yielding, or losing courage: comfort
6: to keep (something) going
And the definition of support group:
a group of people with common experiences and concerns who provide emotional and moral support for one another
Obviously telling them the facts, stating the truth, and NOT enabling them to concentrate ONLY on their disability is not support. According to certain people that is bullying, which I TOALLY 100% DISAGREE!!! Now how does Webster define bullying? Guess we need a definition! So here it is:
1: archaic a : sweetheart b : a fine chap
2: a : a blustering browbeating person; especially : one habitually cruel to others who are weaker b : pimp
3: a hired ruffian
Now that we have all of that defined, can someone please tell me how these people in some of these groups throw these terms around when they actually do not know the definition and I am assuming have never really looked them up!!!
In these groups you see a few of us tell it like it is. We don’t sugar coat things, we don’t enable people to continue to whine and cry all the time about how “hard” it is to have SB, and we don’t coddle them either. This is because the real world will not do those things for them and we never had those things done to us and we turned out very well adjusted; socially, educationally, mentally, etc. We want those same things for these young adults growing up today. We want them to succeed and become better people, not just for themselves, but for their communities. However, if you tell them to knock it off or tell them how to handle situations they may find themselves in, we get referred to as the bullies. Now we aren’t being mean intentionally, we really aren’t being mean or malicious at all, yet we are bullies because we do not enable this type of behavior. Yes having SB does suck sometimes, just like I am sure being “normal” sucks too. Yet, it is not the end of the world and you can be independent and take charge of your own life if you would stop dwelling on your disability and concentrate more on your abilities! How is this being cruel? It isn’t! I find this term “bully” being used way to often in situations where others are just grasping for straws. Leave this word, this term, to those situations where someone is truly a bully, where they don’t care about you and perceive you are weak. The only one whom determines if you are weak or not is yourself!
So to continue, you have the pictures in these feeds. Not to piss anyone off, honestly I don’t really care if anyone gets offended, but if you are posting pictures of your completely disgusting and so infected sores/wounds that you need to be at the wound care clinic and even then they’d probably admit you to the hospital, PLEASE put a warning on your initial post to proceed with caution. Then if you must post the picture, out of respect for others in the group, post the picture in the comments. Even then that makes me want to psychoanalyze you and your need to be posting the pictures in the first place!!! Is it for attention? Is it for sympathy? Are you trying to prove something? Why, just why????
Then comes the parents!!! Holy Mother of all that is good!!!! Now they do all that has been mentioned above and even more but they use their child! Their child who has yet to learn of social media, has no voice as to what is being said or shown of their selves, and who are totally innocent yet sometimes is used as a pawn to gain something from total strangers! Now I understand that having a child with a disability is hard, I do understand. However it is not only hard on the parent’s, it is hard on the siblings, the family as a unit and most importantly, it is hard on the child. That is just it though, nobody said parenting was easy! I just don’t understand how you can bitch about how inconvenient it is to take care of your child’s medical needs because it does not fit into YOUR schedule! Every parent has to change their child’s diaper and feed them – that is what parent’s do!!
Yet again, posting pictures! Why must you post pictures of your child’s sores or other things so that strangers can see how “hard” it is to take care of your child especially when you have a nurse in your home almost full-time! I don’t get this!! My mother took care of three kids, went to college full-time while my dad was working and gone pretty much the entire week, and STILL was able to look after my medical care along with my siblings and their childhood needs! She did all of that without the help of a nurse or extra set of hands. Thank goodness because she taught me how to be independent, how to handle my medical needs by myself, and how to understand that even though I may have a disability, I had more abilities!!!!
Why do must people do these things? I am glad I didn’t grow up with my face and all my scares thrown up on social media. I think if I had, I would have never been able to speak out about SB in the manner that I do now. I think I would have been even more self-conscious and probably would have withdrawn during my teenage years and possibly I would have never gone to college. I would probably have feared that someone would find those pictures of me on social media and use it against me like cruel kids do these days. I would have been mortified! I also probably would have not dated and I am stepping out on a ledge here but I don’t know if I would have even thought about getting married.
My question to y’all is this, what is your opinion on these topics? Have you ever experienced anything like what was mentioned above, good or bad? What do you think will help these young people growing up with disABILITIES? Leave a comment for me!!!!
Shuffle on my friends!!!!!
Ms. DeGeneres, @TheEllenShow
I have been a fan of yours for many years now. I have laughed at your jokes, cried during your TV show when you reunited people, and was amazed by the talented people whom you have picked to play music, sing, and dance on your daytime talk show. However, this last week, I saw something on a show that you produce that did not seem to match what I have seen and heard to be true about you and your beliefs. On “One Big Happy” there was a joke about the female lead taking folic acid because she didn’t what a stupid baby, like a stupid, stupid baby. I was shocked that this was something that was okay to joke about, because it is not okay. Actually to be perfectly honest, it went way over the line.
Folic acid is a vitamin/supplement that women who want to get pregnant or whom are pregnant are encouraged to take in hopes that it will prevent neural tube defects, primarily Spina Bifida (SB for short). SB is a birth defect that is developed within the first 28 days of conception, which honestly most women do not know at that time that they are pregnant. The FDA and the SBA have promoted folic acid in hopes to reduce the number of babies born with SB. SB is one of the most common birth defects and cannot be cured though however it can be managed with proper medical care, early diagnosis and continued medical intervention including but not limited to surgical intervention to extend the life of the individual and treat the individual’s medical conditions that are associated with the diagnosis of SB.
SB is not a death sentence, though severe cases, depending on the type of SB and the locations that it effects related to the spine and the nerves, could result in long-term continuous care. However, individuals with SB are not stupid!! Most individuals whom are diagnosed with SB function at average to above average intellectually. Telling jokes about folic acid when it has been used as a preventative supplement directly connected with SB is absolutely asinine. So many disabilities have been in the spot light, including but not limited to MS, CP, Autism, and even Downs Syndrome and has been a forepaw to joke about these medical diagnosis. However, it seems okay to the writers of this show and to you as a producer to joke about folic acid. This is very disturbing and upsetting to the SB community as a whole.
I am a 34 year old woman, mother, wife, daughter, sister, college graduate, and professional who just happens to have SB. I have excelled at everything that I have done and continue to do so, even when odds are stacked against me and sometimes have to adapt to make things easier for me to accomplish in a world that frowns upon or outcast individuals that are labeled disabled. I have always put my abilities before my disability as have many of my friends. I do not let SB define me, nor will I ever let it define me because I am so much more than a birth defect.
SB happens more than most, including the medical community, are willing to admit. We need more activist telling the facts about this birth defect rather than comedians who think it is a great way to joke about a condition that they seem to know absolutely nothing about and seem not to be willing to learn so they could help a community of individuals that deserve the same respect that others have obtained from their communities and the nation. Not only do we have to fight every day for respect and understanding, as we age we have to fight for adequate health care to continue into adulthood. This is something I myself have been fighting since my early twenties. Unfortunately, the best doctors who treat SB are pediatric doctors and release us at the age of 18 or if we are lucky at the age of 21. This leaves us adults without treatments we deserve and need desperately to continue living a happy fulfilled life with our family and friends.
I would have expected more from an individual, like yourself, whom advocates for many different causes. I would love to believe that your writers and you yourself, did not mean for this joke to have a negative effect on a community of individuals who did not choose to have SB but have learned to embrace it and excel at whatever they decided to do throughout their lifetime. We need advocates whom are willing to put SB in the limelight using factual data to help build more awareness throughout this nation and in the medical community. With all the negative comments and jokes that Hollywood has produced regarding SB, I think it is time for someone to take a stand and offer us an apology. I would encourage you, Ellen, someone who I see as a strong female role model for many, to take a stand for us. I also would suggest that maybe on your talk show, you could highlight those with SB whom have accomplished great things and possibly bring some of us on your show to speak with you and give you the facts about this birth defect that affects many individuals. I know of two other people who would be willing, along with myself, who would love to meet with you and SB. The three of us are trying very hard to change the SB community for the better by making it an easier world for the new generation of children that are being born with SB and making changes in the way the medical community views the diagnosis.
Social media has had some damaging effects on the SB community and it’s very sad to see that individuals in their 20’s who don’t believe independence is possible and continue to live in a world of negativity and depression. We have encountered this all too often and find that these young people are concentrating more on their disability rather than their ability to be great leaders and advocated in their communities and more importantly, in their lives, to better educate expected mothers and grow to be better more productive members of society. I do not want that kind of lifestyle affecting the younger generations. Some of us have worked so hard to push the boundaries of this stigma associated with SB.
I encourage you, Ellen, to really take this to heart and consider what I have asked of you. You know what is like hiding something for many years with the fear of repercussions from people around you, your fans, and possibly your career. However, we respect you even more for being who you truly are, which is, an amazing woman who overcomes any obstacle that you have encountered with determination and laughter. I truly wish you the best and please continue to dance for those of us who are not able to due to our disabilities!!!! Best wishes, always to you, your family, and your success!!!