Wednesday, June 6, 2012

Blog Hop - Pet Peeves

So, I am in a Facebook group called, "International Alliance of Writers for Down Syndrome: The T21 Alliance" - isn't that a great group name? It sounds galactic, like we should have uniforms and secret codes, like what we all do is important - vital even, and I think it is. Changing the minds and stereotypes of a whole world is rather galactic, don't you think? Anyway, the lovely lady who manages the group started something called a "Blog Hop" and as we all know, anything with "Hop" in the title has to be fun, right? Here's what it is. She gives us a topic on Monday, we ruminate on that topic for a few days, and then bam we all blog about it on Wednesday. This week's prompt was, "Downs kid?" - yep, that's it. In essence our "assignment" (if we choose to accept it) is to talk about what gets under our skins about what people say about our children, and what we would like them to say instead. I didn't participate last week, but I thought I would give it a go this week.

Luckily, we have not had too many experiences with negativity when it comes to Abby. We have such a strong support system, and sensitive souls around us, that I haven't had hurtful things said to us, or too many awkward moments, but there are a few things that get under my skin.


  1. All children are unique - even children with Down syndrome - There seems to be a "lumping" that happens with children that have Down syndrome. I will hear some people say things like, "They are so loving," and "Oh yes, they are so stubborn." I know that people are not trying to offend, that they have the best of intentions. In fact I understand that in many cases they are paying Abby a complement (at least when they are talking about her big heart), but this bothers me - it bothers me in a big way. I think because, to me, it negates Abby's uniqueness. Abby is loving because she has gown up with a lot of love - that's it. Period. Her extra chromosome is not the "Love Chromosome". She is just like any child who is lavished with love and affection, and who turns that back to the world around them. The same is true about her stubbornness. I've talked about this before, but I am extremely stubborn. Abby comes by it honestly - I would expect any child of mine (with or without Down syndrome) to be stubborn - after all, it's only what I deserve after what I put my own mother through. So, stop lumping.
  2. Abby is really seven years old - I know, I was there. - I know that Abby is small for her age, I also know that she acts younger than her years. I also know that it is surprising to most when they ask how old she is and I tell them seven. Adults are better at hiding their surprise, but kids tend to get a bit more vocal about their disbelief. I understand that, and most of the time find it funny. I love Abby just the way she is, and actually I kind of like the fact that she seems younger. Kids grow up way too fast anyway, I get to enjoy her in "kid mode" a bit longer. Today, Abby came to my school in the afternoon, because she had a half day and we didn't. The kids (especially those around her age) wouldn't let go of the fact that she's seven and seems about four. When one kid asked me, "How can that be?" I finally just said, "Because she was born in 2005, that's seven years ago." I didn't know what he was looking for, so I ended it with logic, and let Abby continue to make "sand angels" in the sandbox. For the record, this "She's seven?" is very different than the - "I can't believe she's already seven!" The first implies disbelief at her age compared to her looks and actions. The second voices disbelief at that strange aspect of time that causes years to fly so quickly that suddenly a seven year old is standing before you, telling you they want to go to their friend's house "by myself", when you could have sworn they were mere toddlers yesterday.
  3. Abby goes to public school - I've had some people very kindly ask me how Abby is doing this year, and then ask, "Where is she now?" knowing that she didn't continue on at the school where I teach. When I name for them one of the area public schools, there have been some that seem surprised at this. See, in our community we have a wonderful resource - a great building for children and adults with special needs. It is a place where many who cannot function within public schools go. It is wonderful, but it is not what Abby needs. She doesn't need that much support. I think that some think she is there because she has Down syndrome. Abby goes to school like millions of other kids, she gets on a big yellow bus, marches down the hallway in a line (I'm sure wanting to be line-leader every time), eats in a cafeteria, plays on the swings, has circle time and story time, and has a nasty habit of procrastinating getting her work done (another gift from her mother) - just like a bazillion other kids, and she does it along side them. I think I'm extra sensitive to this because I know that there was a time, not too long ago, when Abby would have been sorely misjudged and not much would have been expected of her. We would have been given the advice to send her off to an institution, so no one would need to be "bothered" by her. This not only breaks my heart - it brings out Mama Bear, and so you'll have to forgive me if I'm a little touchy about this one.
There you have it, my top three pet-peeves when it comes to Down syndrome. On a day-to-day basis these things don't get to me - mainly because they happen so infrequently, but when they do happen I find my irritation level zoom to the top. I'm looking forward to "hopping" around to the other blogs, I'd invite you to do that as well - there's some really great ones out there!

Really? Could she be much cuter?

11 comments:

  1. Awesome! I think you speak for many, many parents here. :-)

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  2. Such a good, well-written post. And Abby is just adorable! Glad to find you on the blog hop!

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    1. Thanks so much Leah! I'm pretty partial to my little cutie pie! ;-) I think the idea of the blog hop is wonderful - I've found so many that are great!

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  3. I understand that this is a very sensitive topic for most and I enjoyed reading your post. It was very thoughtful and well written and I gained some insight into this subject.

    Being new to the world of down syndrome, I found it easier to categorize my daughter's behaviors based on the research I did. I simply didn't know what else to do. And what I found is that Ciena fits into much of the mold my research put her in. Because I had categories to put her in, because there were written reasons for her behaviors I didn't understand, I am sometimes able to cope better.

    Then I have to figure out where her personality comes into play and that has been a journey all in itself. I have a hard time distinguishing where the downsyndrome ends and her unique personality begins. Over the past few months my husband has been slowly helping my see and understand that it's not cut-and-dry. Instead it's all interlinked. He can pin point specific aspects of Ciena's personality and know whether it's from him or her bio mom. But hey, he's been her dad for ten years and I cam into the picture 8 years late!

    I appreciate the things you said. Ciena is also in the public school system and she is loving it! She seems to have made some good friends there and her teachers are amazing with her.

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    1. Hi Jess!
      Thank you so much for your kind words and your response. For me it has always helped to understand that Down syndrome is a "part" of Abby, but certainly not all of her. She got that extra chromosome from somewhere, and I tend to think it was me, just because I see so much of "Little Elizabeth" in her. I know that having Down syndrome will create cognitive delays, facial similarities, and health issues (heart, neck, thyroid, etc.), but I think that personality has less to do with DS and more to do with heredity and environment. I think that's where I was going with that.

      I love the fact that you are so diligent about understanding Ciena - she is so fortunate to have you!

      Abby also had some amazing teachers this year - we are so fortunate.
      Thanks so much for sharing your story.

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    2. Thanks for the uplifting comments! Although if you read my blog you may just change your mind. Apparently I'm the worst mom ever - but I delete those comments. I've become extremely disappointed with the blogging world. ::big sigh:: oh well. There are worse things in life I guess. :)

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    3. Jess,
      I read a bit of your blog and you certainly are not "the worst mom ever". I appreciate your honesty. I can imagine it is difficult to have a blended family in the first place, but when you throw in a child with special needs I'm sure it is more so. I remember one of the things I held onto when Abby was born was her connection to me. I was so fearful that she wouldn't look like me, or act like me. I quickly realized that was a moot point. That really helped me see the child first and the "disability" second. Not having that connection with Ciena might make things a bit harder, of course I don't know and I'm only speculating.

      The fact that you are "working things out" via your blog, and are seeking encouragement from others with children who have Down syndrome is a big step in the right direction, you are ultimately finding ways to help Ciena and the rest of your family. Don't beat yourself up. ;-)

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    4. THanks! I definitely needed that encouragement.

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  4. Oh and btw, that picture is extremely cute! lol Kids do the funniest smiles don't they?

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    1. Ha! Thanks! She does make the funniest faces. ;-)

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