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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Monday, August 19, 2013

Unaware

It's hard for me to write this, simply because I fear the backlash. But this is a post I need to write for me. I want to be able to look back and see how I was feeling and where my mind was.

The differences in Lauren compared to Ryan at this age and other kids her age are becoming so apparent. She just seems...blissfully unaware of her surroundings. I say blissfully because she's very obviously happy. But she just seems so unaware.

It's like she wants to be an active participant in her surroundings but she can't. Her vision and hearing have checked out just fine, though we do see them both again this fall. Sometimes she rocks back and forth and shouts, which is adorable and yet obvious stimming behavior. I don't think she has autism. I think it's more characteristic of Down syndrome.

I've been thinking about what her future looks like in the way of education an I know that she will determine her own path. I am by no means intending to place limits on her, but already at the age of 18 months she seems so far behind. 

It's not the lack of speech, Ryan didn't speak at this age. She even signs a few words, which I think is amazing! I couldn't be more proud. It's not that she doesn't interact with us, because she certainly does. She is so lively and seems to feel joy on a level most of us are unable to reach. I can't put my finger on exactly what is different, it just is.

We saw a family out yesterday with a little girl who was about 8-10 months old. She was just so much different than Lauren. She was aware and interacting on a level Lauren has not yet reached. I honestly expected to be sad or disappointed when I made the inevitable comparison to Lauren. But I wasn't. I noticed it in a way you notice another person has a different skin color- it doesn't affect anything, it's just different. I wasn't sad or upset or disappointed. Should I be? It was almost unsettling.

I want Lauren to have dreams and hopes. I want her to learn a good work ethic and try hard to gain the full appreciation for success. I want her to shoot for the moon. But at what point do I guard her heart? When do I steer her towards realistic, attainable goals? When do I steer myself towards realistic goals for her? I love her so much it hurts sometimes, like a deep pressing ache in my chest that seems to reach my very soul.

I look at it this way. To trivialize it: I'm 5'3" on my tallest day. What if I had wanted nothing more than to play for the WNBA? My parents probably would've encouraged my (hypothetical and nonexistent) love of basketball but somehow made in known that that was not a realistic goal to set for myself.

It's an aspect of parenting I'm sure I need to grow into. I've only been on this journey for three and a half years. Only eighteen months with Lauren. I'm hoping that in time I will gain some of this knowledge through experiences, support, advice and prayer. It's kind of a scary road to travel.




2 comments:

  1. I am with you, it is a very scary road. It has been hard to watch my 2 nieces 4 months and 6 months, pass Mya on almost everything except jarred foods. And when we seen my nephew this weekend, 3.5 months, Him and Mya we practically at the same stage. Mya could just sit better than him, and of course could win at a tongue sticking out contest, we confirmed that. lol But she is content, and happy, and joyful, and exactly where she is supposed to be. Today I wondered if I am not pushing her hard enough. I remember when Landon started crawling we pushed him, and I haven't really done that with her. I really don't think she is ready, but what if I am just not expecting enough from her. It is hard to say. But we are in this thing together. :)

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  2. The differences (delays?) do become more apparent as our kids get older, but by then we know they are on their own clocks and that is that. As for the realistic goals... hmmm, I struggle with that as well. None of my girls are nearly grown but I have found that they so far tend to shoot for things that are attainable. I have to keep reminding myself that they can do most anything they want in life. For example, while they will not grow up to be doctors but they could be assistants at a home for the elderly, kwim?

    In the meantime, there is a great developmental journal specific to children with Ds that you might want to download the pdf of. It will help you to see what the ranges are with all kinds of milestones. It was super helpful to me when my girls were babies.

    http://webarchive.nationalarchives.gov.uk/20130401151715/https://www.education.gov.uk/publications/standard/publicationDetail/Page1/ES49

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