Tuesday, August 11, 2015

The Problem With :I wasnt saying it about him. A plea from a special needs mom.

I had contemplated writing this for a while. The words danced in my head daily as I scrolled through my Facebook newsfeed. 

I know for so many this will hit home, and for some it may seem like I am attacking them. This is not my intent, first and foremost. I just want to articulate my families feelings on this subject and help others empathize with us. This isnt towards any ONE person in particular as I see this from friends, family, aquaintences etc. 

Growing up we used certain words to get  point across about how stupid something or someone was, we sometimes used these words to also hurt people. 

Retarded, cripple, limpy, cross eye, slow,etc. 

I hate even typing these words now.
I hate it because my child fits into these ill fitting categories. 

Born with a critical congenital heart defect, our youngest underwent his first open heart surgery at just 7 days old. He came out on life support, and during surgery he had a brain bleed and a Hypoxic ischemic brain injury (he went without adequate oxygen for an unknown amount of time). Because of all of this our Waylon is left with a diagnosis of Hypotonic Cerebral Palsy with Hemiplegia. He has a weak left side due to the brain injury and bleeds, his muscles can be both tight and weak. He didnt feed by mouth until he was a year old because he just couldnt swallow properly and his body was overworked just trying to survive due to his half of a heart. 

Waylon has what appears to be a slight limp due to his weak left side and his muscle being so tight that he has a hard time straightening his leg fully. He requires braces on his ankles and legs to help him properly stand, and a walker to help him to walk. He also has a wondering left eye due to his brain damage, and is quite delayed in all areas. 

Hearing people speak in reference to people like him in such a cruel way is heart breaking. I was brought up that people are people, no matter their color, beliefs or disabilities, but sometimes even my own family  is not aware that their choice of wording about a situation  can sometimes be quite hurtful. 

I have done well to not lash out at people, partially due to the fact that just a couple of years ago I too used the r-word in reference to stupid situations (not people), and because I know that my point will not make it across to people if I run screaming at them. 

I didnt understand how harmful these things were until my son came along, EVEN when they arent in reference to him. 

Making others aware seems like the only solution. There are so many words that are better fitting. 

When we hear people using such words in ill intent about others it only fills us with more anxiety about setting our son free into the world/general public one day. I also know that we cant change everyone, or their process, but we are our sons advocates. He is where he is now because of our advocacy for him. 

If we dont stand up to this, who will?? We need help with it though. WE need others to take a stand, Waylon needs others to! 

As I explained earlier to a family member, the problem with "but I wasnt saying it about him" is that its about people like Waylon. Friends of his, people that are like family in this tight nit community. Its a problem because Waylon will be old enough to understand these words one day, and one day soon he will recognize he is different. He will realize that he has certain factors that hold him back from doing things just like able body and minded people. Though we show him so much love, and show him his strengths daily we know there will be a day that he may feel less than due to his disabilities, and we know that we can not save him from everything. I also know though that if we start now, we start recruiting people to take a stand that we can lessen the blow. 

He will one day understand these words used in reference to people with disabilities like his, and I fear he will become self conscious. His feelings hurt, to think that someone who says they love him, says such cruel words about people like himself. I also put it like this, as a family member if you heard someone say one of these words in reference to him or TO him, would you still feel the same? Would you still be okay with it? Or would you be pissed that someone spoke about or to him in that way? When we speak this way, our children hear it, they carry it on into their daily lives and use it in their daily language. Would you be mad if you heard some child at school called him such a word? Then why is it okay to say about someone else?

Waylon has been through so much, and he struggles daily to do "normal" things. Why cant we take a step to help lessen the blows for him in the future by no longer using these words. When they come to your lips, think of him. His smile, his fight. Help us to end it!