Tuesday, April 05, 2016

If You Don't Have Anything Nice To Say, Don't Say Anything At All

'nuff said.

But it's me, so I couldn't possibly stop there.
I've been pretty light on the blogging lately. Part of that is due to being home and being B.U.S.Y. with 'normal' stuff like school and sports and middle school decisions and routine doctors' appointments. That stuff takes a lot of time and energy, especially with three kids all moving in three very different directions. But what zaps of my time and energy these days is worry. And scrutiny. And fear.

Philippians 4:6  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving present your requests to God.

Struggling, really struggling, with the concept of worrying right now. Ruby's therapy sessions are not offering as many hopeful moments as I would like. Or as many lights at the end of the tunnel as they once did. Instead they are full of disinterest, impatience and uncontrollable impulses. One therapist has been having us work on a mouth/tongue skill with her for a month now. These sessions are wrought with frustration for the therapist.

And this mama.

I can usually get Ruby to perform the 'trick' she is being asked to do, but the therapist cannot. (Cue more frustration.) Our time together is spent mostly in a stalemate. And my therapy work at home with her is not met with as much focus as she used to give me, which can be attributed to anything (especially being two years old), but that means the work accomplished and skills displayed are significantly diminished. 

Speaking of that 'being two' thing... Ruby is very stubborn and will not give up on something, regardless of how many 'no' responses she gets to it. Time outs do not work so far, as she thinks sitting on her designated step is a game (even though the kids routinely get sent there for time out too, and she's seen it modeled correctly). Redirection is my best bet, but even that depends on her desire to be redirected.

This means that everyday tasks like cleaning up after breakfast or making dinner are stretched out infinitely because every minute I'm having to check around the corner on Ruby's activity or stop her from doing something she's not allowed to do (like turn on the microwave, or empty the cabinets). Yes, I show her where to play. Yes, I give her QT before and after so she *should* be fine to self entertain. My next step is likely a pack-n-play to contain her. I don't like that. I know that shouldn't bother me, but it does. She's almost three...we should not be moving backwards with her following simple directions, and she *should* be able to grasp at least a few of our household rules by now (i.e. no touching the microwave or emptying out the cabinets).

Ruby's interaction with other kids is yet another thing that causes my shoulders to stiffen up. This week alone has found us in three situations where she was having 'open play' with kids around her age. I feel like I have to follow her around like a helicopter parent to ensure the safety of others. Ugh. That's an ugly sentence. She wants to interact. She wants to engage. So she will: she'll say 'hi', and usually give a hug. But sometimes that hug turns into a take down. Other times it is followed by her waving 'hi' again, but this time with her fingers actually touching the other child's face. And when it gets even better, she ends up pushing them. For no reason at all.

These interactions, these stagnations in therapy progress, these everythings make me scrutinize...everything. That's not fair to Ruby and it's not fair to me, but I still do it. I read too deeply into Ruby's performance in a round of color matching. I think too long and hard about what it means that Ruby can't stop touching the washing machine buttons. I look too closely at Ruby's part in a social setting.

As this swirls around my head, we're in the midst of transitioning out of Babies Can't Wait (state services from birth-three years old). Next year she will likely go to a special needs preschool for two days a week. I'm certain the county will push for her to attend more based on their evaluation of her, but we want her to attend her typical preschool three days a week to continue the benefits of full inclusion. But how can I expect that she will be a contributing member in her typical classroom next year if she isn't able to communicate basic needs to her teachers and peers? I know there are plenty of kids who are not big talkers, and many that do not engage nearly as much as Ruby. But that's where the balancing act lies...she wants to be involved in everything, so often there is taking of toys, or pushing out of the way in place of words she has in her head but not on her lips.

Then, because once I get into this dark space, I'm unable to find my foundation for what I believe is right or working with Ruby in regards to everything, I second guess it all. Then I worry that I'm not giving her enough time to just be a kid without me interfering. Then I worry that I'm not allowing speech and OT things to just happen naturally (which is really not an option, as those of us working through some of these challenges with Down syndrome know). Then I worry that I'm mistaking my worrying and planning for things to do with actual time working with Ruby and maybe I've got it all wrong and I need to be doing even more.

My opinion remains that she has so much to say, even though she has such limited speech. She's like this sunflower, not yet opened, but containing amazing color and size. But how will anyone know what is inside of her if she remains closed?
And that's where the fear creeps in. The fear that Ruby is not capable of as much as I think she is. The fear that her potential is being met; we are seeing it's entirety in her few jumbled words that are incomprehensible by most people. Enter the fear that inside of this closed flower are only a few petals.

You can see how quickly this spins out of control. You can see why it's not always a good idea to walk through the mansion of my mind. You can see why I sometimes opt to not say anything at all.

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