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!!!!!
Christina Shuffle 