Oct 08 2008
Some People Need To Get A Filter
I have been reading some of the blog posts over at Mosaic Moments and over at Motherhood Unscripted about children with Mosaic Downs Syndrome and Downs Syndrome.
Yesterday, at Mosaic Moments, I read one about a woman who gave birth earlier this year thinking everything was fine, but was then given the diagnosis for her baby. She mentioned feeling that her baby was perfect before they told her that her daughter has MDS.
This got me thinking.
To me, all babies are perfect. Now, I am not an extremely religious person. I do have my faith, though, and I am very spiritual. That said, I don’t think God makes mistakes. I think that all children are born the way God intended. What some might find to be a flaw or a problem, I think is the grand design.
I do know that some illnesses or diseases that children can have can be devastating to the family and can be very challenging to handle, physically, mentally and emotionally.
I also believe that everything happens for a reason and as it is meant to. Even the bad stuff. Especially the bad stuff. We are given challenges and tests every day, so the devastation that can come with some illnesses and diseases are part of that. Not a punishment, as some think, but a challenge to overcome.
I hope this doesn’t come across as me making light, because that is not the intent.
I do realize that for some families, the challenge can be more than they can handle.
I also think that those challenges are not intended solely for that family. They are for all of us. Not to sound like we should all join hands and sing kumbaya, but we are supposed to be a community. We are supposed to help and care for each other, especially when someone is facing a difficult time.
I have heard stories, though of the opposite. Of people putting down families and children with special needs. It’s bad enough when another child acts this way, but when an adult acts this way, it is disgusting. From children with autism to MD to DS, people need to not only learn to show some understanding and respect, but also to lend a hand or word of encouragement from time to time.
A friend of mine was telling me about a friend’s daughter. This little girl is “perfect” except she has a port-wine stain on her face, which is really just a large red birthmark. It is over her eye, forehead and cheek; it is quite large. The mother was devastated when she saw this at the baby’s birth. The baby is one now and is having laser treatment to remove the mark.
The mom is very self-conscious and sensitive about this. It think, as many parents do, she blames herself. It does not help that when they are in public, random strangers approach her and ask what is wrong with her baby.
First, nothing is wrong, she has a birthmark. Second, how ignorant is that? To walk up to someone you don’t know and say, “hey, what’s wrong with your kid?’
I’ve said it before, but I am often shocked by the ignorance of people. Not only is asking what is wrong with her baby rude, it is hurtful. It is hurtful to any parent to imply that their child is wrong. Whether it’s a birthmark or something more serious.
It can also be damaging to that child. Do you think they don’t hear you? Do you think they don’t understand that you think something is wrong with them? Do you think they don’t ingest that and feel badly about themselves?
I know that I would lose my patience with such questions and turn around to ask what is wrong with them.
I have seen people fly off the handle if someone asks how old their child is and why they are still using a pacifier or a bottle. So, what makes you think that asking about a birthmark or disease in such a negative tone is less offensive? I know many people would prefer that strangers come up to them and politely ask what happened if they are disabled rather than the staring or whispering. I imagine that parents of children with some kind of difference would prefer the same politeness.
Thank you Kelly so much! I don’t think I could have said it better! People DO need a filter! The number one concern for parents of children with disabilities is NOT the disability at all! It is how the community will treat their child. Just because our children are a little different people act like it is something they will catch. Or, even worse, as you say, they will say things right in front of them like they can’t hear and understand what the person is saying.
Words HURT.
Back in August the disability community protested the movie Tropic Thunder. Most couldn’t understand why. After all, if we didn’t like the movie, we didn’t have to watch it! However, the problem with the movie was it was encouraging the teens and young adults that it was targeting to use the word Retarded. This is an outdated word and considered offensive to anyone with cognitive delays. One of our youngest advocates, 5 yr old Emma, described the feeling better than anyone has ever described it before! And, her solution, “Mr. Stiller Needs A Time Out!” You can read that story and the others on that boycott at http://mosaicmoments.today.com/2008/08/16/mr-stiller-my-kindergartner-thinks-you-need-a-time-out/
Thanks!
Kristy
Kristy, I am still amazed how many adults throw around “retard” or “retarded” as an insult or a way of saying something they don’t like is dumb. When we were kids, yeah, that is understandable. At 12, we didn’t know better. At 32, we should know better. Thank YOU for shedding light on something most people don’t understand.
I completely agree with you! I am currently in grad school for education and I am taking a class on teaching children with special needs right now. You can learn so much if you just take the time to learn and not to pass judgements. People with special needs did not choose to be that way.
I agree with you that God does not make mistakes, some children are born with special needs for a greater purpose that we may not understand. I have not spent a lot of time with kids with disabilities but they are normally the most genuinely happy children. God put them on this earth to be a ray of sunshine. They my not understand what is going on, but they are happy. How many people can say that?
I just think people need to stop judging and staring at people. I feel horrible for the child with the birthmark. I actually have one too but it is on my side. I know when people see it they think something is wrong with me and all it is is a birthmark! Thank you for shedding some light on the subject. I just think as adults people should know better than to now judge people.
Great post, Kelly, you’re raising fair and just questions, and I think if more people were around children with special needs, or at least exposed to rational lines of questioning like this, we’d all be a bit more compassionate.
Hi Kelly! Great post - a FILTER is exactly what more people need. Would be great if people could just take a moment and think before they said something hurtful and damaging.
Oh, and just fyi, my Henry has traditional Down Syndrome, not mosaic. Not sure if you thought he had mosaic, but I wanted to make sure others are clear on that. Thanks for your post, your thoughts and for mentioning my blog!!
I think some people just need a muzzle.
alicia
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Nice post, Kelly. I work with the public and you wouldn’t believe the comments that fly out of people’s mouths. Some people are so rude and think nothing of openly insulting someone else like it’s a normal everyday thing. Many people don’t realize that words DO hurt.
You made good points. I agree. My daughter was born with a raspberry birth mark along her hair line. I was told to wait until at least 3 - 5 to see if it fades. It did. She had one on the back of her head too, it is totally gone. I always thought of it as a way to know for sure she was mine and if anyone tried to take her, I had a marking of proof she was mine! You are right, God put it there for a reason. I grew to love it.
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I’ve always thought by Cerebral Palsy made me more distinct.
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Thanks!
Since, I have several family members with disabilities I stay on the warpath. I try to be understanding of elders using outdated words but I still find them offensive. My daughter has hemi-hyperhypertrophy. The entire left side of her body is smaller than her right side. I had to pull her out of regular school not because of the kids but a couple of the teachers. The school is aweful! The kids are not handicapped it is us with the disability because we cannot see life as we should. Like through A child’s eyes!
jmprice, that is so true. Somewhere along the way, we lose the ability to see things for what they are without judging everything.