Monday, February 25, 2013

Please Don't Tell Me How To Feel

Having a child with special needs is a process. We grieve and struggle with acceptance, though it does not in any way mean we aren't thankful for our children. It simply means that we must grieve the loss of the expectations we had of a life with a typical child, and learn to navigate the struggles that come with having a special one.

No one expects to have a child with severe disabilities or medical issues, so when it happens to you, you feel like your world has been turned upside down. Adjusting to your new world takes time; how much time depends on the individual. For many, it's a lifetime process.

Grief has been described as coming in waves. At first they come fast and furious, but in time they usually begin to slow down though you still never know when the next one is going to hit. So as grief does, never completely leaving you alone.

The five stages of grief have been described as denial and isolation, anger, bargaining, depression, and acceptance. They say we don't necessarily enter each stage in that order, and often move in between the stages over time. I know for me personally, this is true. Even once you accept what has happened, you still fall back into the other stages from time to time.

This is why I ask that you never tell me how I'm supposed to feel. And I don't mean it to sound harsh. I know people just want to help, and are maybe even trying to help themselves make sense of our situation, but it doesn't help us. The process is far too personal and so inconstant, it just isn't possible to know how someone *should* feel. And if we're feeling far from what you say we should be feeling, it can only make us feel worse.

We don't have control over this process and there is no single prescription for dealing with it. We are going to be sad at times. We are going to be angry at times. We are going to be happy at times. But we cannot predict it. All we need is an ear to listen when we feel like talking, a shoulder to cry on when we feel like losing it, and a voice to help us cheer when we feel like celebrating.

Tuesday, February 12, 2013

What's With The Name?

When I found out we were having a girl, I was over the moon. I really, really wanted a little girl. My mom and I immediately began shopping like fiends. We couldn't resist all of the precious clothes and hair bows and frilly things that you could buy for a little girl.

Even though Ella spent a considerable amount of time in the hospital as a baby, we didn't let that stop us from dolling her up. Every day we were excited to pick out a new outfit and take pictures of her. It quickly became the thing that helped us retain some sense of normalcy in a very abnormal, and often scary, situation.

It wasn't long before the hospital staff took notice of our obsession with decking Ella out. Her nurses were often excited to join in the fun, and people began stopping by daily to see her and check out her outfit for the day. Because of her extreme medical issues, she has always been hospitalized in an ICU (NICU, PICU, TICU) and at some point, she became known as "the best dressed baby in the ICU".

I believe one of the great things about having a special child is that it allows you to have a different perspective and maybe not take for granted the little things that others sometimes might. When we learned that Ella was going to be born "different", we had to readjust a lot of our expectations, but that did not include how we could dress her! It is something "normal" we can continue to do for her when most days are far from typical.

At almost 5, I'm glad to say that Ella still upholds her reputation at the hospital. People still come by to see what she is wearing and what color bow she has in. I think it makes them happy too since they spend their days around children who are sick and injured and not getting to just be children. It adds a little bit of balance and fun to a sometimes gloomy environment.

Our little fashionista in the ICU at six months old.

Thursday, February 7, 2013

The "R" Word

I have been mulling over this post for probably a couple of years now. Being tied closely to other special needs families via the internet and social networking sites, I often see blog posts and articles on this subject. Last night I came across another which got me thinking about it once again.

Mental retardation is a clinical term. It was developed to classify individuals with cognitive deficits, historically those with an IQ below 70. Basically, it describes those born with intellectual and developmental disabilities which may or may not be related to a syndrome.

I have always felt that when I did finally post about this topic I would need to be completely forthcoming and admit that prior to the birth of my daughter I, too, had used the term "retarded" in a non-clinical, derogatory manner. I believe there are only two reasons why someone would use the word: 1) they are ignorant about how and why it is hurtful or 2) they are flippant and don't care that it is hurtful.

I fell into the first category. I didn't know any better. I didn't understand why it was wrong to say it. I had never thought about it. I never had a reason to think about it. Then I became pregnant with Ella, and by no fault of her own, she was born with intellectual and physical disabilities. She was what could be clinically described as "mentally retarded". Even though I KNOW it is a legitimate, clinical term, it still hurts me to write that. Why? Because of the stigma associated with the word. Because it's still used so freely and flippantly by so many as an insult to describe something that is dumb, stupid or not worthy. My daughter is the opposite of those things. Her name is not interchangeable with the common perception of the definition of the word "retarded".

I believe a major part of the struggle special needs parents go through, especially in the beginning when they find out their child will be different, is not only grief over the loss of the expectations they had for a typical child, but also grief and worry over how the world will view and treat their child because they are different. We all know that the world can be a cruel place, especially if you possess noticeable differences from what is considered to be the norm or the perfection society makes us believe we should strive for. We see how much more prevalent this behavior is among children and teens, but as we grow into adults it becomes less socially acceptable to treat people this way. We come to know better, probably because we all experienced ridicule at some point growing up and know how awful it feels.

But when it comes to people with disabilities, it is still too socially acceptable to use disrespectful language, and essentially make fun of them, even among adults. Is it because most people have never had a personal relationship with someone who is disabled? It has to be. Because if you have ever known or loved someone who is, you would understand how hurtful it is to hear it. If it's not okay to make fun of people who CAN defend themselves, how is it okay to make fun of people who don't even have the ability to stand up for themselves?

Just like the "N" word, the "R" word has clearly become a pejorative in our society. So why would people purposefully continue to use language that they know is hurtful? Freedom of speech doesn't include hate speech. Originally, freedom of speech was a right given to speak up against the government, to protect and advocate for ourselves. It doesn't imply the right to use dangerous and hurtful language. Just as libel and slander are not allowed to defame someone's character, neither should language that disrespects a population of people who are mostly denied the right to free speech themselves simply due to their disabilities.

People with disabilities were born that way. The same as I happened to be born with brown eyes, it wasn't a choice and it can't be changed. Nor should it. But what can be changed is the way these individuals are viewed and often disrespected in our society - a large part of which is tied to the acceptance and derogatory use of the "R" word.