I feel pretty defeated today. I shouldn't feel that, but I do. You see, the kids had their EI evaluations in their new 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 cerepral palsy diagnoses isn'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 1, 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'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 allow me to be the mom not weighed down by those little nagging thoughts of, "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. 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. 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.
