You may have heard that there is a new series out on A&E called "Born This Way". This show features adults in their 20's and 30's who have Down syndrome. It's a reality show that is trying to highlight all that adults with Down syndrome can do, as well as the obstacles they face. It shows their relationships, work and how they live their lives.
Going into this show, I had mixed feelings. It can be hard and scary to see adults with Down syndrome, because sometimes when I see them, I actually see Down syndrome. I see the obstacles and limitations they face rather than seeing who they really are. In some ways I'm ashamed to admit this, but it seems as though a number of other parents who's children are Asher's age feel the same way, so I'm going to put it out there because it's real. This doesn't mean that I don't accept him for who he is, it just means that from time to time I may struggle with the realities of his diagnosis. It doesn't change my love for him and who he is or my acceptance of him exactly the way he is because without that extra chromosome he would lose some of what makes him Asher. It just means that as he grows and changes we will face new and different accomplishments and obstacles that we will have to jump over.
So from the first episode this is what I gathered and felt: joy and hope mixed with some sadness. The young adults featured were funny, witty and ambitious. They had much of the same hopes and dreams as any young adult. Yet, it was noticeable that while they all spoke quite well, they all had speech impediments (I'm not sure if that's still the politically correct word, so my apologies if I offend). I feel like when one doesn't have clear speech or speaks more slowly, an assumption about their intelligence is immediately made about them. If someone has poor grammar we are quick to label them as uneducated, if someone speaks clearly and eloquently, then the opposite is assumed. It saddens me that Asher might be judged on how his words sound vs what he is saying. Or maybe I am just looking in a mirror and facing my own judgements that I am quick to make...
That beings said, I LOVED watching them sit around at their center having a deep and intellectual conversation about the word and diagnosis of Down syndrome. What it means to them and the choices that their parents made when topics like abortion were brought up in the case of prenatal diagnosis. I actually loved that they knew their stories, both the good and tough.
I loved that Megan had started her own business, went to college and that she desired to live on her own, even though it hurt my heart for her mom who was trying to be brave and let her fly while knowing she may still be living several states away. If Asher ever wants to start his own business, I'll put in the endless hours it takes to help it succeed.
I loved that several of them stated that they love who they are Down syndrome and all. I love that they don't let it define them and I love that one even said she doesn't know if she would change that about herself if she had the chance. Oh how I want to foster that love and self acceptance in my little boy and I know that starts with me.
My heart hurt for Elena as her mom admitted that it took 20 years to fully accept Elena as she is because she was born in Japan where it is a disgrace to have a child with a disability. And now Elena struggles to even hear the words Down syndrome because she doesn't know why God "gave it to (her)". This is a huge lesson for me as a parent. I will from now on be so careful to never let Asher know if I am struggling with part of his diagnosis, whether that be fear or some other feeling. Down syndrome will not be an unspoken word in our household, but it will also not be the focus of our household. It will just be a part of who Asher is.
Lastly, I learned that I need to put away my own fears for the future. There have been times (more when he was really little and his delays weren't apparent yet) that I didn't feel ready to go to certain events where there would be individuals of all ages and all abilities because I didn't want to have to face the parts of the future that scared me or were harder for me to see. But, after watching this episode and learning how important it is for him to have peers like him, I need to put that aside because not going to events to spare my feelings and avoid my fears is selfish. I will make a great effort to become more involved (when time allows) in events that highlight all ages, not just children that are his age.
I'm sure as I watch the rest of the show each week that it airs, I will have new thoughts and feelings. I want to reiterate, when I look at Asher I don't see Down syndrome. I just see my son. Yes, when lined up next to Lucas I do see where he is delayed, but at the same time it just seems like where he is supposed to be. If he's on a timeline it's only because I put him there. I am so thankful to be his mama and I wouldn't change him for the world. This post is just about the fears that I face when thinking about his future because in watching this show, I had to stare it in the face. I think that if you can watch it, watch it. Get to know the people under the diagnosis and don't limit those in your own lives who have disabilities.
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