Wednesday, September 22, 2010

The Day to Day #2 - Hybrid Us/Them

I have lotsa kids. Well, 4. And only one of my kiddies has special needs. The rest of my kids are more or less typical...which, if you have kids, you know that can encompass a REALLY wide range! :)

I have one foot in Very Complex and one foot in Normal. It is a weird place to be. I often find myself answering the questions from my own children about their sister that the outside world also asks. For those who wonder, yes, it is every bit as difficult to answer siblings as friends or strangers. I'll be blunt, it may even be trickier.

(Quickie cheat sheet, in case you don't know us: Gabriel is 12, Elise is 7 (almost 8), Amelia is 4, and Charlotte is 18 months.)

When my other children ask why there is a double standard, I have to answer. I have to explain why their sister is different...and explain it enough that they have working information, but not so much that they tune me out. I have to make it clear that their sister is still their sister, but the levels of ability and necessity are not on a even playing field. I have to meet needs and I have to apply appropriate expectations. I can expect Amelia to get completely dressed, I can expect Elise to struggle with fasteners. I can expect Amelia to follow more complex directions than Elise. I can expect Amelia to know what Elise says better than Gabriel. (We tease that she is bi-lingual. She speaks English and Elise-ese fluently.) I have to intervene more for Elise than my other kids and pray that they won't resent it...I can expect Gabriel to assume all his sisters need intervention, while I can expect Amelia to resent that I make her be more independent and responsible than Elise...because she can. I can expect Charlotte to ply Elise with more requests of aid in stealing snacks because Elise is a willing accomplice where Amelia will mother her, and probably tell her "no".

We've taken the tack like we've handled the "sex" questions. We answer ONLY what they are asking. If you answer any more, then either their eyes glaze over or they have more in their head than they need.

I will say, that we had answered all of Gabriel's questions about Elise, but when we got pregnant with Amelia, he was 7. When we told him that she was going to be a girl too, he responded that "Ah, man!" He wanted a boy cause they would walk and talk sooner..."girls take FOREVER!" After I picked myself up off the floor from giggling, I told him that it was just because Elise had Down Syndrome, and not every girl takes 2 and 1/2 years to walk! He said that is wasn't that bad then. :) I just thought it was cool that he thought she was normal...and loved her as is.

The older she's gotten, the more complex his questions have gotten. But the acceptance hasn't changed much...for which I am thankful.

Amelia on the other hand has a more difficult seat. She is 4 years younger and has grown and developed normally and in some ways precociously. She is a tall 4 year old to boot. So, they are almost the same size and have the same interests. Amelia is more coordinated and has better speech. She is both more clear and more understandable and uses more complex language. She also grasps more complex subjects. Recently she has really come to understand the unfairness of the expectations placed on her and those placed on Elise...she doesn't like that she has more responsibilities and expectations. But we cannot change this, or we will be doing her a disservice.

I find myself tearing up over the fact that Amelia can put on her Polly Pockets clothes, but Elise cannot...but I console myself over the fact that Amelia is always happy to help her...

I wonder sometimes if God made my kids "nurturers" by nature or if they have grown that way by having Elise in their lives. I'm thankful either way.

I wonder sometimes if I am "special needs parent" or a "typical parent" and I like to think I am a hybrid. I like to think that I can understand better what people on the outside wonder...and what they need to ask...but because I love my Elise, I know how I wish they would respond...I guess we'll see if this ends up being a blessing or curse...Nah, I guess I don't need to wait, it's a blessing...I just hope it ends up being a blessing to others, too...I don't need to hold too tightly to God's gifts!

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