Tuesday, September 13, 2016

My Thoughts on 'Born This Way' A&E

I have watched "Born This Way" a television reality show on A&E featuring young adults with Down syndrome and their families since its first season with great interest.

I found the idea of the show fascinating when I first heard about. As a speech-language pathologist, I have treated many children with delays, disabilities, or conditions, but I don't know what happens to these children when they grow up and start transitioning into adulthood. But most importantly, I watch the show as a mother of a 10 year old girl with Down syndrome.

Watching the show, it is easy to see that there are many abilities within the cast members. To describe a few of them for you, John is full of personality and a budding rapper. Megan is an excellent public speaker and advocate for Down syndrome as well as a hard worker at her business. Rachel is a caring friend and has a job in an office. Sean is a self-proclaimed ladies man.

During the first few episodes of season one, I wasn't sure if I would fully connect with the cast. You see, while my daughter has Down syndrome, Jaycee has many struggles -some of which are unrelated to Down syndrome. I have yet to meet another person with Down syndrome like Jaycee that has had two heart ablations for Wolff-Parkinson White syndrome, a rare defect of the heart's electrical signals. Jaycee also has a lung cyst and recurrent lung infections, which has led to twice daily airway clearance treatments for a couple of years now. My sweet daughter is also a very brilliant communicator, but she is not able to do so with many words. Severe childhood apraxia of speech (which can occur with Down syndrome) has prevented her from being able to form words clearly and produce all consonant and vowel sounds. She uses signs and her communication device primarily to "speak."

Yet, watching the show, I saw that the cast members all have their own struggles. I think for those of us who have minimally or nonverbal children, we often think that our children have it harder. Our children are limited in what they can express and question. I have no idea what my daughter's dreams and goals are because she cannot communicate that with me. I don't know what Jaycee understands about abstract concepts like God because she doesn't yet have the ability to ask questions to clarify. This truly does limit life in some ways.

While the cast of Born This Way are all verbal, I have clearly seen that their lives are complicated by other matters. The biggest issue this season for many cast members seems to be finding the balance between wanting independence, marriage, babies, and their own lives while trying to understand what it takes to make this happen. In the show, Megan is seen struggling to understand money and the concept of how much things really cost, which is vital to budgeting and living alone. There is instance after instance of cast members wanting real love from a member of the opposite sex but perhaps not always knowing how to go about that through proper steps. (I.E. Saying I love you way too soon, understanding the difference between a crush and love)

I have learned so much as a parent watching this show. As the parents try to teach and prepare their children for the things they want in life, I can relate to the decisions and fears they express in their interviews. As the children assert their independence, the parents must walk a fine line between allowing their children to try new things while keeping them safe with the information and supports needed.

While we are dealing with different issues in my home with a 10 year old child, I am starting to experience this for myself. Jaycee wants to be independent in the shower which is evidenced by her slamming the door in my face. (Good communication, right?) I also know that if she remembers to wash her hair, the shampoo will only go in one spot in the front of her head. This is really not a big deal, but I must find a happy medium where she does these things on her own but accepts my instructions to keep improving. Other similar situations have been popping up with Jaycee where I must answer the question, 'How important is it that I step in to help her do this better?" As I navigate these new waters, I am glad to see other parents tackling more difficult issues with their children on the show.
A scene with Rachel from the show

But the most amazing part of the show for me has been the casts' comments about their own lives. I wanted to cry when Rachel expressed her displeasure over her weight gain and the possibility that it's the reason why boys aren't interested in her. I felt for Steven who wants to date girls without disabilities but finds this almost impossible. When Elena described her fear as she watched her friend have a seizure, I saw the care and love in her. Cristina's jealousy with her fiancé is an issue that many couples must face and deal with.

If you have a family member with Down syndrome, I encourage you to watch this show. You will learn something and feel a connection to the cast that may give you some insight with your own loved one.

To learn more about the A&E show or watch episodes, visit their website.  Catch new episodes on Tuesday at 10/9c.

1 comment:

  1. I'll have to watch that show too! Just heard about Speechless and very keen to watch that- they worked with the CP Foundation apparently to make sure it's an accurate portrayal -but the trailer looks great and it's a comedy and we all need to laugh!!


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