Imagine you are in the restroom at a function. You are going about your business and you hear people coming in. Not wanting to be eavesdropping you try not to listen. Then you realize they are talking about you. How you need to be fixed. You are not talking properly. You wore the wrong outfit. Gasp, you were very excited. You sit there and listen to these people who know you, but don’t understand you. You sit there in the stall but am unable to speak up for yourself.
Remember back in high school when all you wanted to do was fit in? Imagine if you overheard your parents talking to another parent about how they just wish you were normal and not a geek. You listened to them talk to your aunt on how you were awkward and for Cripes sake why wouldn’t you just wear deodorant. Your confidence would slowly diminish as you realized not only did you not fit in, your mom felt you were not perfect.
It would suck, right?
I mean seriously both situations it would suck to be you. For you to sit there, unable to speak but to hear. You would never want to be that person or be the person who was caught passing judgement.
Yet too often, my self included, someone will think out loud: I wish she/he was a normal, typical kid. I wish my kid was normal, I wish they didn’t have autism or Down syndrome or name your disability.
I had a recent conversation with a friend that got me thinking. What if Bridget heard and understood what was being said about her? What if she thought she was perfect and normal until she heard those words? What if her sister that she idolizes thought she wasn’t good enough?
Sometimes, we forget that just because our children cannot speak does not mean they cannot hear.
They hear their teachers complaining about them and their friends. They hear their mom crying at night. They hear their dad telling a friend that she is their “forever” child. They hear their sibling saying they cannot afford to go somewhere because they exist. They hear their relatives talking about them and asking questions they don’t about their sibling. None of these people mean harm. They do not blame the child and would never hurt the child. Ever. They would be heartbroken to learn that the child understood.
But just because they cannot speak does not mean they do not hear every word.
The real question becomes, who am I to say Bridget needs to be fixed?
Bridget has struggles, boy does she struggle. Life with Bridget is more difficult than her sister. But not really. I don’t have teenage angst with Bridget. I don’t have a child that talks back with Bridget. Yes, I still have to wipe her butt but I don’t need to tell her to brush her teeth.
PACS1 provides Bridget with a life that is not the same as her sister. But that doesn’t mean her life is wrong and needs to be fixed. Without PACS1 Bridget may not have the sparkle in her eye. Without PACS1 she might not be as loving and full of hugs. Without PACS1 she might not have the evil laugh and the absolute joy this life brings her.
Bridget is who the child she is because of PACS1. The good parts and the difficult parts. If she hears me breaking I hope she understands that I break just as often (but not as publicly) because of her father and sister. I do not ever want Bridget to think she needs to be fixed. I want her to see the therapies as not to fix her but to make her life easier. Teaching her to walk wasn’t because she needed to be fixed. She could walk, she just needed to be taught differently. Teaching her how to speak was not because she needed to be fixed, it was that she could speak she just needed to be taught differently.
I remember when we first started ABA therapy and me being worried that I was trying to create a trained monkey. It took me a while to be able to understand that it was up to me to make sure the ABA wouldn’t take away Bridget’s personality but that it would allow her to be a part of her community on her terms. Bridget is a part of our community, she just had to be taught differently.
If I could go back to when Bridget was in utero, I would not take away the PACS1. It’s easy to say that now. Her first week of life I may have thought differently. That moment when I made the decision to save her life was the moment I determined to be happy with whatever child I came home with. I would do anything in my power to “accept” this unexpected life. I was wrong to think that way. Thinking that way, of accepting a disabled child, means this child is less-than her sister. Watching Bridget grow I realize that if I took away PACS1 I may be changing the core of what makes Bridget, Bridget.
I’m not willing to risk that, even if science may one day be able to.
I would be saying that Bridget is not good enough, that she needs to be fixed, that I do not think this is the daughter I deserve.
I’m not willing to diminish her that way.