Recently I read this post written by another special needs mom who talked about being her child being "secretly disabled" when he was little. One of things she talked about was the comments she would get about her son when he was little. I have to say that sometimes this is one of the hardest things for me. See in our home, in our world, Matthew is well, Matthew. He looks and acts normal to us. Well, his normal. I often forget what outsiders see.
Take for instance; last week, I was getting a couple things at Target and took Matthew with. He was in his stroller (wheelchair) WIDE AWAKE, and the clerk made the comment; "Wow, he is sacked out! What a great way to be able to get all of your shopping done!" I just smiled politely.
And then the other day, Mason had forgot his lunch and I had to run it to him at school. His room is fairly close to the front door, it's a small school, and I was in a hurry. So I didn't put Matthew in his wheelchair. I just grabbed him and carried him in. At the front door, a man I didn't recognize said "Wow, he couldn't get any limper if he tried!" Well. What do you say to that?
I just don't know what to say. Katy, said it in her comments section so well. She said she is not hurt or offended, it makes her feel uncomfortable, and likened it to when people call you the wrong name by accident. I hear these comments so often, that the "human-ness" in me wants to set them straight. But I know they don't mean ill-will to their comments. And I know the right answer is, that I am supposed to use these comments as education moments. I mean, I could pull everyone that says something aside and give them a 15 minute speech about Matthew, but that could be very cumbersome and uncomfortable for the reciever or my message. I just usually smile politely and keep going. I mean, they are noticing him right?? Which it is pretty hard not to notice his amazing cuteness :) :)
I am not ashamed of Matthew, quite the contrary. And I'm not looking for sympathy by writing this. I'm just putting my feelings out there, because, by judging the comments written in Katy's blog; I'm not alone. A lot of us deal with this. And writing is the way I process things. So thank you all , for my free therapy session. :) I think I feel better.
If you have time, read the post I linked to above. Then read the comments. It's a good read. Promise.
8 comments:
Jill,
Thanks for posting this. Even when there is nothing people can see on the outside, the comments still surface - with Ari, it usually happens 1-3 min. into someone meeting him - the stares begin and they will finally say, "what's wrong with him." My answer- nothing! He is exactly how God meant for him to be - and oh boy am I blessed by that because without him - I would be so much less of heart. Thank God for our gifts! The "comments" have made em a more patient and understanding person and also made me so much more aware of what I say to other people too.
You write your feelings well Jill. You are real without ever sounding whiny. I will make certain to hop over and read all the comments on Katy's post when I have time later. It sparked some thoughts and connections of my own.
Thanks Jill for posting that. Jody N
Jill- I love this post. I can relate to what Gretchen is saying in the comments. I just got a "what's wrong with him?" question the other day at puccioni's office. I was taken aback and will have to try Gretchen's response next time. Time for some more Matthew photos :)
I am posting a comment on your post about comments. Oh dear, I think they Dayquil has made me a bit punchy.
My reaction to the comments depends heavily on my mood. Being in school with Owen is sometimes very difficult. All day, every day there is a long string of kiddos passing us in the hallway and they all stare. Many of the teachers have made a point of making their kids all say "Hi Owen" when we pass in the hall. I do appreciate that they are working hard to make the kids see Owen as a person and to acknowledge his name rather than "that kid with the big head" but some days it just serves to underline to me how different Owen is. Like you say, at home we forget that Owen isn't the same as others, but when we get out it becomes so much more obvious.
When kids ask "what's wrong with him" I tend to be more understanding and say something like "there is nothing wrong, he was just made differently than you were and has a different life than you do". Or if they say "what a cute baby" then I explain that he's 4 years old - and when they inevitably say "why can't he walk then if he's 4" then I'll just say that he's working on it and will learn in his own time. Children will notice the difference and as adults it is our job to teach them how to react. I will encourage them to say hello to Owen and try to help them to not be intimidated by his chair and implant and all that.
But when adults say these sorts of things I have less patience. I'd love to say that I'm always polite but I know that if I'm in the wrong mood I'm just as likely to say "He can't help the way he was made, but you can help being rude." This probably isn't the right way to handle it, and if I'm in a good mood I probably say something nicer, but after a while I get tired of people being rude to me and expecting me to be polite back.
I think the hardest ones to handle though are the ones that stop you in the grocery store and tell you that they had a son/daughter/niece/nephew/friend with hydrocephalus or some other disorder and then go on to explain all the troubles they had and that they eventually died. This has happened several times to me. I understand their pain and I do not ever wish to be rude to them or to not sympathize with them, and yet I wish that they would understand that I still have a son and that I really don't want to picture the worst happening to him. I hope that I am nice to them and I certainly try to be, but I do find them difficult.
OK, so my comment has turned into a novel. Thank you for sharing, this is obviously a rough thing for all of us and it helps to share our experiences.
Somehow I never get offended when people ask what's wrong with Elisabeth, because there is something wrong with her. Her body did not grow correctly. It's just a fact. At least that's the way I look at it. But the fact that something is wrong with her doesn't change her value as a human being. I actually believe it makes her a little more valuable because she is what I call perfect. She will never have a bad thought, she will never hurt anyones feelings, she will never know of evil, she will never be tempted to do wrong. She is and always will be perfect :)
Love it Love it Love it. I even posted a comment on her blog. Thank you for sharing!
Jill - I'm there with you! I love getting Quinn out and about, and love it when folks talk about her. I get the - wow, she must be tired - a lot! Most of the time I just say, not really, and go on, but sometimes to make it easy, I just agree. I totally know what you mean! We are lucky to have them little, because as they grow, we won't have the mishaps, and so I'm loving having the mishaps now, while she still is small!
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