Tuesday, November 19, 2013

A Mother's Reaction to the Journey to Answers

I'll admit, I shed some tears that night.  I'd figured I would, no matter what I was told; pregnancy makes me prone to crying.  But after battling to get her to bed that night, when I would talk very seriously to her and she'd just smile and laugh, I began to loose faith that this is just normal toddler behavior.  I began to realize how out of control I'd begun to feel, that I was losing the ability to reach my child, to connect with her.  And it may be normal, I don't know.  I've never had a toddler before.  And every child is different.  But having yet another person say the word, and losing all my arguments against it, my defenses crumbled.  Because my arguments against it aren't from a maternal instinct of what is or is not true about my child.  They are from a selfish instinct.  The instinct that says, I am not ready to be the parent of an autism spectrum child.  That I can't handle a mental problem.  I feel I can do surgeries.  I can do medical.  I may not want to do it, but I feel confident that I can learn to manage medical situations.  But mental... psychology was my least favorite and worst subject in nursing school.  I didn't get it.  I hated those clinicals.  I want to understand my child.  And I don't understand autism, or PDD-NOS, or auditory processing disorder, or any other diagnosis that might be on the table right now.  And that scares me.  How can I raise a child I don't understand?  That thinks and processes differently than I do?

And my reactions in the past week weren't helping my thoughts.  I'd gotten so frustrated that it felt like I was talking to a brick wall.  That we weren't able to do a simple task that she'd been capable of doing just the week before while she was in her "lights on everybody's home absorbing everything" phase. (She does this every so often, times when it seems like she can hear and she reacts and responds and is, well... normal.  And they always give me hope that she's going to catch up soon.  And then she goes back into her world, often for months on end.) And I remember thinking, sitting there in the floor surrounded by Cheerios, that I hoped she had a hearing problem so that I'd know that the reason she was sitting there staring blankly and not moving was because she wasn't hearing my instructions.  She was just in her own world...

And I've said that so many times.  She's just Ladybug.  She's in her own world.  Leave her in her own world and she's perfectly content.  Interfere in her world... she might take kindly to it and she might not.  But I don't want her to be in her own world.  I want her to be in my world.  I want her to see what I see, hear what I hear, enjoy what I enjoy... I want to connect with her.  To understand her.  To know her heart.  Not in some sort of controlling way, but in a loving way.  So that I know how to help her.  And I think that's what scares me the most about this journey we're embarking on.  That I won't know how to help her.  That she'll be beyond my reach.  That she'll stay in her own little world, and I'll be shut out.  And when she's frustrated, and crying, I'll be clueless to know how to reach her.  That what I do will only make it worse.  And that kills my mother's heart.

Today, the llama and sheep and goats came to our side of the field, and got up on the dike so that we could see them.  I grabbed the girls and went out in the chill, bare feet and all, to see the "amina" (animals).  I sat them on the porch railing, and we watched them.  And they watched us.  And we talked about the llama mama, and the sheep that say baa, and the goats that say meh.  And she smiled.  And she and I looked at the same thing without effort.  And she repeated the names and sounds.  We connected.  Side by side, not face to face, but I'll take it. And I treasure those moments.  Because yesterday, nothing I did could reach her.  We talked.  We disciplined.  We distracted.  And nothing worked.  And I felt that distance so keenly when Turkey stopped sobbing and melted into my shoulder the instant I picked her up, pure love.  Some of that, I'm sure, is just toddler.  It's two.  Or personality.  I was never a loving child.  But I can no longer hold fast to the idea that there is absolutely no other issue with her outside of pure medical science.  Because I don't know.

And what little reading I've done has said one thing loud and clear: early treatment is the closest thing to a cure you'll get.  Waiting only makes things worse. So when our EIst called this evening to ask how quickly we wanted to move forward, I told her to go for it.  I want the assessments done, all of them, to get as much information as possible so that we can help her the best we can.  I've heard of autistic kids "slipping away" and I don't want that to happen.  I don't want the feeling of not being able to reach her to get any more frequent or desperate than it already has.  If we do the assessments and she's negative, awesome.  But we have to know... we have to try.  Even though it hurts so bad to admit it.


  1. Hugs to you. So many hugs. Praying for you, so much. Thanks for sharing your mother's heart.

  2. [hugs]

    Thanks for sharing your mother's heart -- it's a beautiful one. I'm praying for you, so much.