Monday, June 29, 2009

Therapy - somebody please talk me off this ledge

Andre, Finn's new OT, called today. Just to see how Finn did over the weekend with the feeding exercises he gave us to do. So I lied and said, "He's doing great! I think your suggestions are really helping!" I was so caught off guard by the phone call. Is this guy new or something? Like, he really cares? Enough to take the time to make a phone call just to see how Finn's doing? Wow. Really, I'm impressed and moved even. But I feel like a big LOSER. Because the truth? I haven't implemented any of the suggestions he made. What he wants me to do is spend 10 minutes before each meal gearing Finn up with all these oral stimulation exercises. Then I'm supposed to allow Finn to take the food from the spoon himself, meaning I am supposed to place the spoon in his mouth and then wait for him to close his lips around it and draw the food from it. Instead of just scraping the contents of the spoon off on his upper gumline. Which, I'll tell you, is about half as time-consuming. Who has time for all of this?

So I'm feeling guilty. I mean, if I'm not going to do the work, then I guess I'm just wasting this guy's time, right? (And really, the same could be said for PT . . . I don't do PT with Finn between sessions. I play with him, the kids play with him, and he gets plenty of physical exercise and stimulation that way, but official PT practice? No. And yet, he's still managing to progress, despite my failures.) Something keeps telling me that with or without therapy, eventually Finn is going to get it, this whole eating thing. I mean, Down syndrome or not, he's not likely to start kindergarten still eating stage 2 baby food, right?

I never really wanted or even requested weekly feeding therapy. Initially I just wanted a freaking consult so a professional could evaluate him and give me some direction. But now I've agreed to weekly OT because the therapist who evaluated him for feeding issues said that's what he needs, and now I don't know what to do. I don't want to cheat Finn out of services that will benefit him, but I don't want to waste anyone's time either.

I am really close, at the moment, to just chucking the whole therapy thing altogether. Am I in denial? I just want him to be a kid, not a kid who spends half his week in therapy.

Ack.

19 comments:

heather said...

You are not alone! I was terrible with doing the stuff in between visits. And lied from time to time. Even with Griffin...he had some speech therapy and I didn't do a whole lot of follow through. I just wanted them to come out to let me know that what was going on was 'normal' and expected and that my child was going to be fine down the road not because I wanted a lot of exercises to do with him.

The Beers Family said...

We still have EI with an educator for speech - do I think it makes that much of a difference - no not really - he picks it up in his own time anyway. Feeding wise our OT was great - even though we did not practice that much - she did give us some good tool to let him chew on - I gave him some before he ate just to chew on and get his mouth "stimulated". Honestly I just liked having the support of the OT and educator. I will be surprised if we continue when we are re-evaluated. I do appreciate the extra eyes though.

ds.mama said...

Confessions of an EI slacker mom... I have a post coming on this and maybe thanks to you I will get to it today! Don't feel bad, you are not alone! (But don't quit either.)

Karly said...

I am so very with you on wanting to chuck therapy...

Loren Stow said...

Oh it's a tough one! I also have Malakai in all kinds of therapies and truth be told, I don't implement half the stuff either... Where's the time? And, just like Finn, Malakai is progessing. I tell myself that what he learns at therapy is somehow stored on a cellular level and he then implements it naturally all by himself. Then I have to laugh at myself, because is this really possible?
We can never know what our kids would have done with or without therapy, it is impossible.
So, I think, just do your best. Give Finn and yourself the best shot you have. If that means all kinds of exposure to therapy, then great. If that also means that you don't have that much time right now, then you don't. You're doing the best with the time you have and you're doing a great job!
Be gentle with yourself, let Finn lead the way, he's a happy, healthy, beautiful little boy!

Tara said...

Ok, I confess. I'm an OT AND a slacker therapy mom! Ugh. I know that it's beneficial to do what they ask of me, but I live in the real world and it's not gonna happen most of the time. Sounds like your OT probably does not have any kids, because I think he's completely unrealistic.

That said, even if Finn gets that extra once per week during therapy, it will benefit him. Keep doing what you can and he'll be fine! You are NOT wasting anyone's time. )

Brandie said...

I'm blown away that he called to check up on you guys! Goldie has always had a hard time with drinking. We've been working on it for about a year and a half. I'm supposed to do some things before she eats. Yeah right! Maybe at lunch, but not dinner. I decided it was family meal time, not therapy time. I finally took her to an ENT for a swallow study. He said not to worry she will grow out of it eventually.

With the morning sickness I've had, we haven't worked on anything. I was feeling hugely guilty about that. Then, I started seeing her do new things, all on her own. I think she figured if I wasn't going to entertain her she better learn to do it herself! So, don't worry. Finn will do great!

Kim said...

O.K this is making me feel better since Mattie has never had therapy and she is 16 months old. They come check on her every 3 months to make sure she is progressing. I hear about all these kids getting therapy and sometimes I feel like I'm cheating Mattie for not "demanding" therapy. They say she is doing fine so I never push the issue.

Chrystal said...

I'm right there with you, mama.

Ria said...

Hang in there! Therapy can be overwhelming. We get OT twice a month. Sometimes I wonder if we should have it every week since Matthew is still on baby food and he's almost 21 months old. But I think that if I try to do whatever I can in between therapy sessions, it'll be the same as having OT every week. That said, I truly don't do therapy with Matthew everyday. I have a nuk brush and only use it sparingly. I tried to when he was younger but I just got burned out. And I have honestly told our OT that I have not been implementing all her suggestions - either because Matthew doesn't care for it or I don't have the time or don't see a difference. Luckily, our OT isn't very militant about using the various oral motor tools. Remember, you're a mom first, not a therapist. And allowing Finn to lead the way and just play like any other kid is as good as any therapy.

datri said...

I have to say I feel much better about being a slacker now.

sarah said...

I think we all slack off from time to time and thats ok. Lots of times I sneak things in while were playing so it doesn't seem so much like "therapy". I do feel its important for our kids to have therapy, after all is really does help, and there are lots of things we don't know about because were not in that particular field. So if we can learn new things and new ways to encourage etc., why not? One thing I do know is PT is not neccesarily to make them crawl, walk, jump etc., sooner its to make sure they are doing things with proper movement instead of making up for their lower tone, and doing things in a way that can cause damage later on. Be easy on yourself, were all right there with you.

Lori said...

Yep - After reading your post and all the comments - I am feeling much better about myself and the fact that I don't do 'therapy' with Anna between appointments. We try to implement a few things during playtime, but otherwise she gets pretty much the same treatment as my two older children.

Beth said...

I have been ready to chuck therapy SO MANY times, but my mom said something that I think is probably true. After she had knee replacement surgery, she had to go to PT for a good long while afterwards and she said it's not that any of the things they told her to do were all that magical, but it kept her honest and accountable to someone. And every once in a while, she did find out they had a trick up their sleeve that helped.
I think it's that way with EI and therapy in general. It just keeps us all trying.

MaggieMae said...

As you can see from all the comments, we've all been there. Keep going with the therapies and do what you can to integrate the therapist's suggestions. Honestly, that's all you can do. A PT once said to me, "the 45 minutes I spend with them 2x/week is not going to make the difference in their progress. It's what you do with them the other 23 1/4 hours/day that will!" It doesn't have to be therapy but keep him engaged. And, I agree 100%, Finn's, first, a little boy.

The boys' teacher asked me recently how I get them to participate in a specific activity and I said, "I don't! I gave up the teaching job to you when they went to FT pre-school 6 hrs/day! When they come home to me they're just regular kids... together we have a snack, play, watch a favorite movie, have dinner, take a bath and go to bed." They're learning Montesori style. I'm following their lead and working in "therapeutic" activities to the extent I can. I help them climb up the monkey bars on the swing set, use their own utensils until they stop then I feed them...

Keep the therapies and do what you can.

Laurie said...

Ah...just a couple of weeks ago or so, I wrote something very similar. I had had it with all of the oral motor stuff...the chewy tube, nuk brush, rubbing his cheeks with a warm wash cloth - sheesh!!! Give me a break!

Anyway...I agree with you that this therapy stuff can be confusing at times. Aside from PT (she is WONDERFUL!!) I wonder how much good it's doing as well.

Hang in there! I wouldnt get rid of it just yet.

Jeanette said...

Oh Lisa, there are so many times where I want to cancel out ECI appt because I have done NOTHING that "I" was supposed to do. There are times (like lately) where life is sucking the wind out of me and I don't have the will or energy. I KNOW that you have been drained beyond belief lately and this extra just might be too much sometimes. Don't quit... but slow down to what you can handle.

Michelle said...

You know, I don't think it's a bad idea to take the summer off from therapy...

JaybirdNWA said...

Lisa,

Try not to be so hard on yourself. It sounds as though you have many other things that need your attention than just Finn. I often wonder myself how much good I do for John as far as therapy is concerned but I keep doing it because that is what I know to do and I tend to be driven that way (poor John). Your kids are one of the best therapies that Finn has right now just as with my kids. We sometimes forget that therapy doesn't always have to be structured, it is all in how we play with them.