Wednesday, August 17, 2011

Pressure To Keep Silent

On one hand are the folks who say, "Children with Down syndrome are gifts from God," and are relentlessly positive. I have every concern that any complaints I make will be met with judgement.

On the other hand are those who hear my exhaustion and think, "I would never choose this for my own family." I have every fear that any complaints I make could influence others to chose not to have a child like my Ellie.

All this weighs like a heavy load of sand pouring upon my head, pushing me down and filling my mouth, keeping me silent.

All parenting is hard work. But sometimes parenting a child with special needs is especially hard work, and this is what I want to talk about.

It's hard to talk about. Because any example I come up with - of my child pouring a bottle of water all over herself or dashing out into the street or being unable to handle a stressful new experience - a nearby parent of a typically developing child will be able to say, "Oh, my son did the same thing last week."

It's not about a specific behavior; it's about a pattern, a matter of degree, an increased frequency, an unquantifiable difference.

These two things exist simultaneously and without conflict for me: I love my daughter so much it hurts, - and - sometimes parenting her is exhausting and I just want it to be easier. Yes, even though she is a gift from God, a delight, a joy, a blessing. Sometimes the burden is heavy. Sometimes her diagnosis does feel like a burden. For her, I'm sure, and also for me.

The best compliment anyone ever paid me was when a friend told me, "I love watching you with your children; it's obvious how much you really enjoy just being with them."

My love for my children is apparent and undeniable. Recently, I've been coming to terms with the fact that parenting one of them is hard, too.

My child behaves impulsively. She might dash out into the street without looking, she might leave the house while I'm in the shower, she might reach across a hot stove if she sees something she wants above it, she might do something I've never once considered doing. It's hard to child-proof a house for a child who behaves in ways I can't anticipate, and who is tall and strong and smart enough to drag a chair over to reach whatever she needs, and has mastered the magnetically locking cabinets. Moreover, I don't want to childproof the house against her! She's nearly eight! She's my big helper! She can get her own snack, feed and water the dog, wipe down the table after dinner with a clean rag, and reach toys off high shelves for her sister. I want to teach her to be responsible with her body, to think things through, to make good choices. These are hard lessons for any kid, but - you see where this is going.

Primarily, I'm aware of this: as hard as it can be to parent a child with special needs, it's much harder to be the child with special needs. Ellie struggles so much everyday and my heart aches for her. What parent wouldn't die a little inside, seeing her beloved child hurting when things are more difficult for her, when she's constantly being corrected, misunderstood, overlooked?

Next up: Don't discount my child because of her diagnosis.


Orange said...

Aww. Hugs for both you and Ellie.

funckdren said...

Right there with you. Couldn't have said it better. I want to say: I wouldn't have anyone else! And also: He's really challenging right now. But don't feel bad for me! And on and on. Thank you.

Carmel said...

I love this post. I have an "average" child (or whatever I should call him) but it is so great to hear what parents of kids with downs are thinking/doing/feeling.

I'm sorry if I ever said anything that keeps another parent up at night! we're all in this together. :)

Kristen's mom said...

I was laughing when I read your recent post when Ellie mentioned staying home as part of your fun summer. Home was Kristen's favorite place. We could be at Disneyland and she would ask, "When are we going home?"
I also had to smile when I read that Ellie is impulsive, that she runs off and pours water on herself. When Kristen was younger she would always escape. I couldn't even take a shower without having someone watch her. She also would randomly pour milk on someone. As she got older all of this changed. She still liked to tease everyone, but I no longer had to worry about her escaping. I can also tell you love your children.

Sarahlynn said...

Thanks, Orange.

Funckdren, yes, that, absolutely!

Carmel, yes, we are!

Kristen's Mom, thank you! It's so wonderful to hear other families going through the same things . . . and knowing that some of it (like the eloping while I'm in the shower) will pass! We're planning a trip to Disneyland and I'm already preparing Ellie. We went on a practice trip to 6 Flags and she spent the morning asking to go home. In the afternoon she discovered the water/boat rides and everything changed for the better! Miles of walking is still a challenge though.