The Fine Line between Raising Awareness and Oversharing
A Family Story– Since 2009, I have shared about the journey of raising our son, Wyatt, who has special needs. It started as a simple reply to a request for submissions, and since that time we have had 44 Op-Ed and special reports published by CNN and CNN’s iReport feed.
Our stories have been featured nationally and internationally. But, that’s not all; our son has been the beneficiary of a 3-D printed robotic arm from a group of students at the University of Central Florida, Limbitless Solutions, and Blue Man Group. His video went viral this spring.
Here is my point: I have shared our story locally, nationally, internationally and my child has been featured on every major news and network source. I believe our story creates hope.
As a family, we read with great interest, “When parents overshare their children’s disability,” by Carly Findly:
Why? Because it is often a family discussion at our dinner table -are we raising awareness or oversharing?” Wyatt is now almost 13. He has “reviewed” my writing. In fact, he contributes to my CNN- iReport page. When Wyatt was 4, my husband, Jim, encouraged me to start writing for Parenting Special Needs Magazine. I felt isolated and alone. I was also tired of reading posts that fell into one of two camps: angry or fluffy. I wanted someone to tell me their “real story” and offer some sensible solutions. In truth, it was therapeutic for me; it made me feel better. I no longer sensed that my head was going to explode.
We have talked openly about his challenges and I have tried to incorporate his feelings and thoughts into my writing. Other parents have shared that their children identified with Wyatt’s comments. I find it interesting that he has gotten good at recognizing other children with similar speech and physical challenges. As a very social child, he is quick to approach them and ask them about their “armie” (what he calls his shorter limb) or why they are covering their ears (because he does that too).
I am also often asked how I manage to get Wyatt into so many general education activities? Truly, I just keep sending him. The “old me” would call and share all about Wyatt’s challenges. But, I quickly learned that all that did was set him up to fail; not because he couldn’t do it, but because the teachers or counselors decided for him.
We have blazed a path
In addition, we have tried many sports, activities and camps. Only a few ended in “unmatched expectations” which is a nice way of saying “we can’t accommodate your child”. Even then, I protected the names of the “not-so-sensitive” in my writing. But, I believe that through sharing we have blazed a path for other children in our community. On more then one occasion Wyatt was accepted into a program that resulted in his peers being included, too. We laugh that Wyatt was the “acid test” of inclusion: “Well if they will take Wyatt…they will take our child,” parents often commented. Honestly, I am proud of that and Wyatt is as well.
My husband, Jim, says it well, “Some disabilities are visible and some are not. Everyone has a challenge. It’s just a matter of if they are willing to admit it”. I truly believe that attitudes are the most debilitating obstacle…for anyone.
I confess I am a Facebook addict, but I am also an equal opportunity sharer. I post and blog about everything in my life with one golden rule: would I say it on a loud speaker? Furthermore, I read my posts to my son and husband. They are, if you will, my tempering balance. This does two things: first, it involves them in the process and secondly, it also keeps me from embarrassing my family or saying something I will regret.
I will take risk to share
Now then, every once in a great while, I slip out of bed and go scurrying to my computer at 4:00 in the morning to delete a post before my husband sees it. However, I quickly learn how many people really read my posts and Tweets! As far as my family is concerned, I don’t think I am “spilling the beans”; my son is missing part of an arm. That is a fact. He is also sometimes hard to understand. For heaven’s sake – I am often misunderstood! But, here is the bottom line: I will take a risk to share. If I can help encourage or inspire someone else by sharing, then we, as a family, have done a good thing.
Recently, Wyatt asked about becoming a summer camp counselor. I shared with him the opportunity to help at a special school in our district for children with a wide variety of differences. His response was, “You know Mom, I know what it was like to not be able to talk, and I think I can help”.
I believe that my sharing has shown our son how to help. We should all reach out and show compassion.
Here is my point: If you feel we are over sharing – stop reading! It’s all about choice. I CHOOSE to share because I care.
Helpful Articles
- Advocacy: What Does That Word Mean to You?
- Basic Blue Print for Advocating for Your Child with Special Needs
- Early Intervention: First Steps in the Right Direction
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs
- Advocating: What You Need to Know to Become a Better Advocate
- “Instruction Manual” for Your Child With Special Needs
- The Politics of Special Education: The Information You Need Right Now
- A Review…What Is Special Education
- Empowering Your Child’s Best Advocate: You
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I saw blue man group in Milwaukee and it was one of the best shows I have ever witnessed. Glad these kiddos could enjoy it!!!!!!!!!