23 June 2015
A Mild Case Of Down Syndrome
I've been meaning to write a post about this topic for a while, but it seems like sometimes life gets in the way. I have been a bit blog lazy lately. A while back, I wrote a post about special needs' parents and the things that you shouldn't say to them....ever. As I sit here today thinking about that post and going over the list of things that bothered me, I feel kind of silly.
This was my list.....
- She sure looks like she has a mild case of Down syndrome.
- Her head is so round, she must be mild.
- Kids with Down syndrome are ALWAYS happy.
- I'm so sorry that this happened to your family.
- She looks so normal.
- My uncle's brother's nephew's cousin is autistic, so I know what it's like.
- Why didn't you stop having kids after the first one? WHAT???
- Did this happen because you and your husband are related?
- Wow! How old were you when you had her?
- You are a saint.
- Will you ever have any more children? That's kind of scary!
- Well, I guess it could be worse!
- God has given you a child forever.
- Does she actually look like a family member?
- You sure are handling this well.
- Do her brothers and sisters have a bond?
- Did you actually know when you were pregnant?
- What's wrong with her?
- Did you drink? Smoke? Do drugs during pregnancy?
- Will she always be like that?
- Is it somebody's fault?
- Did it come from your side of the family?
- They don't live very long, do they?
- I guess you won't have grandchildren.
- I'm sure she will get a job, maybe at Wal Mart or something.
- Do you take her out?
- Is her sister handicapped?
- You should feed her more.
- Does she sleep?
- What will happen to her after you die?
- Is the rest of your family ok with this?
- You must be exhausted.
- Ummm....she's so......cute.
- Did you consider adoption?
- Is there a chance that she will outgrow it?
- I guess you can't go on vacations.
- Can I touch her?
I don't know what you want to call it, but I have come to a point in my life, an epiphany, reached a great spot on the mountain, crossed a bridge. Whatever it is, it feels pretty good.
I have been overly protective when it comes to Adele. I overanalyze almost everything and I automatically assume that people are ignorant and that they can't see the beauty that lies within my child.
The first one on my list above, makes me laugh today. I laugh because I actually said this when I was pregnant with Adele. Those words came out of my mouth. I didn't know that I had said this until I recently came across a message that I had sent a friend on Facebook. I wanted my child to have a 'mild case' of Down syndrome.
Those words have irritated me when they come out of another person's mouth, yet I said the exact same thing. You know what this tells me? I was ignorant. I was uneducated when it comes to Down syndrome. I had no idea, yet I get offended and on the attack when others make these types of comments about my child. This one in particular doesn't really bother me, but it's a good example of where I used to be.
Recently, I have come across some posts on Facebook, where moms and dads are so bitter at others for the comments that they make about our children. I needed to take a step back. I get that we need to protect our children, we need to be on guard at all times because the world is out to get our kids, people are cruel.
I think what we need to realize is that we are the ones travelling this journey. We are the only ones who know exactly what it is like to walk in these shoes. We are the only ones who experience the major ups and down when you have a medically fragile child or a child with special needs. We need to stop assuming that others get it. They don't get it. Doctors, nurses, therapists and other professionals don't always get it. I've been witness to it, but it's up to us to speak up, we need to encourage change. Sitting back in your chair, biting your tongue and cursing in your head is not a solution.
People don't know what to say. People don't know how to say it. People aren't always out to get us. People sometimes feel uncomfortable because they don't want to say the wrong thing, they don't want to hurt our feelings, then it comes out all wrong and we get upset and post it all over social media that another jerk made an insensitive comment about our child.
I realized that I was one of those people before Adele came into our lives. I know I said the wrong things, I asked the wrong questions, I said things in a way that may have been offensive. Never would I have wanted to cause pain or hurt to others, but it didn't always come out right. I could just imagine what others said about me after I walked away. What did I expect of others? I wanted to learn, I wanted to understand and I needed for others to respect that I required some guidance.
I think sometimes we forget to relax. Last week, I was at Heritage Park with the girls. This lady kept staring at Adele. I got my back up and was going to ask her what she was looking at. When we walked past her, she stopped me and told me that Adele was absolutely gorgeous. She told me that she was a perfect little package. What did this teach me? Stop assuming the worst. Stop looking for negativity. Stop thinking that the world is a big cruel place.
While reading this blog post, don't come to the conclusion that I have turned into a wimp or that I will tolerate abuse or hatred towards our children. I will always advocate for our children, I will fight for what is right and I will stand strong behind my beliefs, values and morals.
There are some things that are inexcusable and offensive to myself and my family. I do not waiver when it comes to these three things.
1) Retarded - Just don't use it in any context
2) Down's baby/child - first person language is a must
3) Comments that are deliberately hurtful and malicious
The days go by so quickly. The moments become distant memories. I don't want to look back in 10 years and regret that I let worry and fear consume my days. There are assholes everywhere and there will be plenty who will come in and out of our lives, but there are so many amazing and kind people in the world who will love our children, who will support us and who exude happiness, love and light. Be the parent that our children need us to be. Educate others, but do it with kindness and respect.
I want my children to see their mom as a person who is making a positive difference in the world, one who does not let negative consume our days, but a mom who welcomes others into our lives. Our children are a product of their environment. Slow down. Enjoy Italy, Holland and all the other places that our children will take us.