Tuesday, August 16, 2011

4-word sentences

First off, let me confess: we don't bathe our kids every night. *gasp* Last night was a non-bath night. My husband came home just around bedtime, and the girls were desperate for some dad attention. In our temporary home, he is the one who bathes them, because my back can't handle it. (I used to just jump in the tub with them, but our temporary house has a tiny bathroom and even tinier bath.)

Ada's genius solution to spend more time with dad? Her first 4-word sentence ever: "Ada vuil - pappa bad" which translates to: "Ada dirty - daddy bath" What a clever stalling tactic before bed! Her exact wish wasn't granted, but her daddy did scoop her and her sisters up and gave them some extra hugs and playtime before bed. Too sweet.

This morning, Emma said, "Pappa gone. Work. Mamma home."

I just love this newfound level of communication they have with stringing words together. It's lovely to hear them express themselves, to find out what's going on in their heads, and for me to be able to talk in complete sentences, and know that they're grasping what I'm saying.

There is so much chattering happening now that I find myself saying, "Hang on. One at a time. What did you say? (pointing to child)" I chuckle as I'm writing this, just imagining the preteen and teen years. Oh.my.word! And already, they're on their play phones constantly.

I'm seeing more tantrums, less patience, more exerting of their wills, and more typical 2-year old behavior. So I've started to offer them choices, and picking my battles. For example, when getting them dressed, I'll ask, "the pink shorts or the blue shorts?" Now, whenever I bring their clothes, Julia says, "Julia choose (shorts/dress/pants/shirt)!" like she's expressing first dibs on selecting. Classic! Simply awesome to watch their personalities develop and to watch them learn new skills.

Ada: independent, tinkering, exhuberant, loves exploring stuff

Julia: daredevil, social butterfly, loves jumping, climbing and singing.

Emma: gentle, cautious, loves reading and running full tilt.

The above is what they would naturally gravitate to if we aren't doing any structured activity.

All of them enjoy reading, singing, dancing and being around people, and are extremely observant. They note things that they hear, see or smell, that would just otherwise pass me by. Through them, I've become much more aware of other aspects of our world. The crickets chirping, the wind blowing, an airplane passing overhead...

Tuesday, August 09, 2011

Being on the fence

I feel pretty defeated today. I shouldn't feel that, but I do. You see, the kids had their EI evaluations (in our new county and state) today and according to the therapists, they all came out "right where they should be." Yet, they're only looking at "functionality" and only saw the kids at their absolute best. First thing in the morning, right after they slept and ate.

I hate being in this position of needing to advocate for them. You know the kind of unenviable position nobody wants to be in when facing a medical professional: the whining mother. The one who insists there's still some progress to be made when people who look on the surface think otherwise.

Today, I felt like I needed to justify and convince. Their 3x Cerebral Palsy diagnoses aren't "enough" to qualify them. What.the.fuck. "Cerebral Palsy is a catch-all diagnosis. It's so broad," said the therapist.

So, "they probably need orthotics" but because they can walk "functionally" they "don't need therapy." Say what? So, in a sense, it's counting against them that we've taught them to walk by age 1ish, and to run and jump before age 2. That, I hate. I want to celebrate their successes, not be in this position of barely good enough.

I'm pissed because I feel like I failed them today. I'm frustrated because I don't want them to have to receive services, and yet, here I am battling the system... and losing.

Parents of kids with hemiparesis and paraparesis have warned me that if their diagnosis is mild, it's a struggle to obtain and maintain services because the kids' problems are subtle and not always "on display" during an eval. I knew this awkward position was coming, yet I feel utterly overwhelmed by it and quite stuck with how to proceed. Essentially, they're doing too well to qualify, and not well enough for my mind to be truly at ease.

Of course, I'm also the woman who cried when their first round of evals came back and showed that they had delays. I'm the woman who bawled when they were diagnosed. So, I should be happy about today's good news, shouldn't I? Isn't this what I've wished for all these months? That they would progress beautifully? Isn't this my dream come true? Then why does this feel so wrong?

I want to be just proud of every single thing they do, and not want to have to point out the stuff that they're struggling with. Stumbling. Not being able to balance all that well. Walking into walls when there's the smallest of distraction. Still not tolerating certain tastes and textures. And yet, that's what I had to do today. I heard myself as I was talking, and I could hear the patronizing answers coming back at me.

Absolutely the worst thing a therapist can say to you when you voice a concern, is that "there's a wide range of normal." Or: "that's what typical toddlers do." Like I don't have eyes in my head. Like I don't have THREE kids who share the same experiences but with wildly different personalities and skills that span the spectrum of what typical is. Like I haven't read all there is to read about their diagnoses, like I haven't sought the insights of other parents with kids who face the same diagnoses, like I haven't consulted with many medical professionals. I despise feeling dismissed.

I'm getting even more peeved as I'm writing this, which means the vent is probably working. Thank you for allowing me to voice all of these conflicting thoughts. I hope to be back to my thankful place tomorrow. The thankful place that allows me to be the mom not-weighed-down by those little nagging thoughts,

"What if they get teased?"

"What if they struggle more if they don't get the help they need now?"

"What if all the targeted play and "work" we've done with them the past 21 months is negated by them not getting all the help they need now?

"What if they regress on skills already learned?"

"What if they learn the 'wrong' way of using their bodies to compensate and then we have a harder struggle ahead than we needed to have?"

They qualified for weekly OT and PT sessions before, but now, in our new state, we'll be lucky to get a monthly PT session and maybe 4 OT consults in 6 months. It's not nothing, so we have a lifeline. And for that I am truly thankful. It's just not what I know in my heart they still need.

I've always imagined them being done with EI by age 3. Again, thankful for that. And we were on our way toward that goal. But now I feel like they might not get the help they need right now... and then we may need to step it up when they're older and in school. That thought terrifies me. To wait until the delay is so visible and bad that you can't address or erase it with ease. To go contrary to what the mommy gut instinct is saying.

This is hard.