Stupid Effing PT!

[judecorp]

I am really pissed about my kid's early intervention services. Or lack thereof.

When it all started, they were going to assign my kid a PT. Great! Except she's really busy. Boo! But she runs a swim group once a week so we would get to see her every week. Great! Except that it was right smack in the middle of the very important morning nap. Boo! So we went twice and it was simply too much. So then we were going to meet her at the Y before the swim group, so we could get some one-on-one time weekly and then go home and nap. Except she cancelled two out of the three times we were supposed to do that, and then I went to work on Thursdays.

After pushing and pushing, she finally agreed to go to the day care and meet with Jen. And I had to push her into it. And then she wanted to be "flexible" with the time ("Let's say some time between 12 and 2") and I had to 'gently' remind her that Jen was coming from work so she nailed down a time. I kept waiting for her to cancel, and my heart sunk when she called at 9:30pm the night before... but she just decided THEN to ask for the address. Argh!

And then when she finally did go and see my kid, I left Jen a whole list of concerns and things to talk about and the freaking PT was like, "Oh wow, that's great you notice that, it's really subtle, blah blah, it will be fine," and then said she will check back in another month.

OH HELL NO.

I have no idea why this is acceptable to her. A month is a HUGE amount of time for an infant and she's getting to the point where we've gone from being proactively monitoring things to HELLO, SHE IS DELAYED. Kids that were crawling and pulling to stand MONTHS after Punk are now cruising and standing alone and lowering themselves to the floor and all kinds of things that she is clearly unable to do. In a month she will be a year old and then what? THEN they will say she's a late walker and they should do something? Or maybe then she'll say, "Oh well, TECHNICALLY a kid's not a late walker until 15 months..." and then see her again in a month?

I am making a huge stink about this today. Just because I work in EI doesn't mean my kid doesn't deserve to get the right amount of services. I'm more than prepared to go to the Director today.

Comments

[ladyleo.livejournal.com]

I can't believe the PT is being that lax! Good job being a vocal mommy!

[fleur.livejournal.com]

What a frustrating PT. She doesn't sound like she's paying much attention at ALL, so good on you for being vocal.

[judecorp.livejournal.com]

My guess is that she has too many clients, many of whom need more help, so she is trying to prioritize. Which I get. I mean, I know the system. I have no problem with a more generalist clinician and the monthly PT consult, but I don't see why it's a problem for my kid to be seen more often.

[kaleidoscopeeye.livejournal.com]

I am sorry you are having such a frustrating time with this.

[marlatiara.livejournal.com]

And it's that cascade that led me to PT in the first place. The "wait and see" only works for so long, then the delays start stacking up.

That said, that PT sucks. Is there ANY way you can get reassigned, or seek out help elsewhere? Bleh. BLEH!

[judecorp.livejournal.com]

I am always amazed at how many people (read: pediatricians) have families wait for a REALLY long time. I .know. it sucks to have to tell families that their kids have delays, but umm, we're really not doing anyone any favors by ignoring what's going on, or waiting until things get compounded.

I have a good friend online whose son is 10 months and is not rolling/sitting. (Sound familiar?) At the 9 month visit, the pediatrician told her to wait and see until his 1 year and then talk about services. OH HELL NO.

I made her call. :)

[marlatiara.livejournal.com]

"I have a good friend online whose son is 10 months and is not
rolling/sitting."

Want to play matchmaker? I'd love to talk to more people in this situation - off of lj though/via email.

[judecorp.livejournal.com]

I'll ask her. She's really awesome and you guys would have a lot in common re: organic food, cloth diapering (you cloth, right?), etc. xo

[jeffholton.livejournal.com]

My monkey says to take a deep breath.

You may be right. I'll grant that.

Also to consider: delay doesn't necessarily mean anything at all.

I *still* haven't learned a number of social graces (take, for example, the fact that I'm leaving this comment), but DAMN do I make a good piña colada, or what?

Punk will be alright. She has the most important attention of all: mommy.

[judecorp.livejournal.com]

Of course delay doesn't have to mean anything, especially on its own. I mean, she's a smart, mostly motivated kid and I really do believe that things will all sort themselves out.

But what I don't understand is this: the PT was so concerned about her muscle tone and range of motion (or lack thereof) that she made me promise to make an appointment for a pedi neurologist (which I did, it's just not until August) because she is thinking CP, why now is she like, "Oh, she doesn't really need to see me, blah blah blah" ? If you think my kid may have mild CP, don't you think maybe she should be receiving some sort of help? I don't get it.

Punk may never be the most athletic or coordinated or graceful kid. I am 100% confident that she will learn how to walk and run and squat and all of those things. But I also know that it takes her a lot longer to get those things, and umm, that's what EI is all about.

She's qualified under the law, so they need to start ponying up the services. :)

[rizzo41.livejournal.com]

I don't think it's acceptable in any profession to be cancelling appointments left and right. That's crazy! And between 12 and 2? She wanted Jen to hang out for two hours to see if she will or will not show? And then after all that to say 'oh, it's probably nothing.'?? That's crazy! I'd sure be raising a stink. Even if Gus really is fine this woman is either so overloaded she can't do her job or she just doesn't care to do a thorough job. either way is bad.

[judecorp.livejournal.com]

I think she 'forgot' Jen was going to come and thought she could just be flexible with the drop in because she's at day care all day. Nevermind that she's never even asked me when she takes a nap! (Wouldn't that be important?) Of course, I don't expect any more from someone who calls at 9:30pm the night before (in a house with an infant and 2 working parents) for the freaking day care address.

If it's "probably nothing," why is she so insistent that I take my kid to a neurologist?

[changinglight.livejournal.com]

UN.ACCEPTABLE. COMPLETELY, TOTALLY UNACCEPTABLE.

Can you get her into another program without it being a conflict of interest?

[judecorp.livejournal.com]

Well, we had a nice little 'chat' on the telephone on Friday where I 'reminded' her that I knew the state regs and the EI law and I knew that services were supposed to be determined by the family (within reason) rather than the clinicians. And she stammered a bit and then said she would talk to the director about getting us what I want.

If it comes back unfavorable, I will call another program. I actually was offered a job at this particular program (the one that is servicing Punk) and I specifically decided NOT to go there because of the runaround my kid is getting. Argh.

[changinglight.livejournal.com]

It sucks that you have to advocate so much, and is even more terrifying that it takes your level of knowledge to get what Punk needs...It makes me more than a little concerned for the rest of the caseload. sigh. I am glad that the pt was taken aback and sounds like there (might) be some movement.

[judecorp.livejournal.com]

What sucks is that I can totally see where she's coming from. I /know/ how hard it is for EI programs to have PTs because they can't pay what the hospitals can pay. And I /know/ that there is always a HUUUUUGE wait for PT services. But what she doesn't understand is that I KNOW this and I'm not trying to get more PT - I'm totally cool with her once-a-month action because I know that's fine. But I don't see why it's a big deal to assign my kid to an educator or social worker or whatever so that someone can see her more often and monitor how she is doing, and can go back to the office and chit chat with the PT about things to try.

Nothing is more frustrating than storing up a month's worth of questions and then getting a laundry list of suggestions for the next 30 days. I'd much rather have someone to check in with once a week who could see what we're doing and tell us if we're doing things right, etc. I don't really think that's too much to ask.

Basically I want someone to give a crap about my kid besides me. :) I told her that I was tired of being my daughter's service coordinator rather than her parent, and I wanted an ACTUAL service coordinator. We shall see.

[evewasframed.livejournal.com]

What a nightmare!

[yip95.livejournal.com]

That totally sucks. Isn't she, um, getting paid for this shit? She should be able to make a set appointment, and see her at least once a week. Shaya got her OT twice/week and we had to fit into her schedule, but at least we had appts and they came on time and stuff.

Is it really considered delayed to not walk by 12 months? Most of the kids I know weren't walking by then. Zach wasn't even ready, he just started being able to stand on his own for a bit. Now he's walking like a pro.

I'm glad you're goin' all Mama Bear on their asses and getting Punk the help she needs!

And maybe after this heat wave breaks, we can set up a little playdate somewhere convenient!

[(Anonymous)]

that really sucks!! i'm glad you are keeping after them to get what you want, i wonder how many parents just agree and merrily go along thinking everything is ok?

our son just started walking at 10 months and everyone is amazed because it's too EARLY!!