Monday, October 19, 2009

Responsibility

The thing about therapy is that it can become a sort of safety net. I, of course, can only speak for myself, so take this for what it's worth.

When we were doing weekly PT with Finn, although I had misgivings about the value of the therapy (how much was it really helping him accomplish? Was his progress due to the therapy or his own natural inclinations?), I at least felt like we were doing everything possible to "help" Finn, and the responsibility for his progress (or lack thereof) was diluted and shared. When we decided to reduce therapy to once a month, all the responsibility came crashing down on my shoulders, or so it feels. And guess what? He's kind of stalled in his progress since we made this change in his IFSP. He hasn't had any formal PT since mid-September (we have a session scheduled for next week), and he hasn't really made any progress since then. In fact, in some ways it seems like he has regressed. He used to hold a standing position if placed in that position with something to hold onto. He used to "walk" if held up by the hands. He won't do either of those things anymore. He just flat out refuses to bear weight on his legs, and I don't know why. And I feel like it's all my fault.

True, he hasn't felt great for much of these past few weeks. There was some horrific teething going on, and now he's sick with a nasty cold. So there's that. But is that it? Is he not progressing because he doesn't feel good? Or is he not progressing because I made this drastic decision that he didn't need weekly therapy? Or worse yet - and more to the point - is he not progressing because I don't "work" with him enough?

The naked truth is that I am no natural teacher. Nor have I ever had any desire to be. I have never been the kind of parent who sets aside time on a regular basis to sit down and teach my toddlers their ABCs. I don't like structured, educational play. I don't have the patience or self-discipline to structure our time like that. Fortunately, my older kids seemed to teach themselves their ABCs and such.

And people think that God only gives "special" kids to "special" parents?! Haaa! Well, you know me - I don't even believe in God. But if there were a God, he missed the boat on this one. Because I'm no special parent by any stretch of the imagination. I can usually be found hanging onto sanity by my fingernails. Most of the time I think my kids are succeeding in spite of me, not thanks to me.

I had hoped that Finn's natural instincts and inclinations would be all that he really needs to progress. And it's probably true - I have no doubt that even without any therapy whatsoever, eventually he would walk and run and climb and everything else. Maybe it would take him longer. Maybe therapy helps them achieve milestones and goals sooner than they would without therapy. I don't know. There's no way to know. The fact of the matter is that there are kids who get tons of therapy and yet they still do not walk until past the age of two, or do not talk until they're five or six. And there are kids who receive less therapy who progress quicker. And there's all kinds of in-between. And no matter what Finn achieves - with or without therapy - I will never be able to know how it would have been different had we chosen a different protocol.

One of the main reasons I felt so strongly about reducing services was because I didn't want his babyhood and childhood to be filled with therapy. I didn't - and still don't - want him to look back and remember his childhood as an endless series of therapy appointments. I didn't - and don't - want him to ever feel like he is seen as a set of problems that needs to be fixed. And I don't want our other kids to view him that way either.

But, in choosing to reduce services, I took on the full responsibility for Finn's progress, and now I feel like I'm failing him. Am I supposed to set aside an allotted time every day to "therapize" Finn? Because I don't. Every night when I go to bed, I resolve that tomorrow will be the day that I get down to business. And every night, I also realize that the day got away from me, and I let it. And what do I do when he completely resists? Do I force him to do things he doesn't want to do and ignore the tears in the name of progress? How can I motivate him to want to do these things? Or do I just let him be, let him enjoy a mostly therapy-free childhood and accept that it's going to take him longer to meet milestones, and just enjoy the slower ride?

I'm kind of at a loss right now. These thoughts, these feelings of failure, have been eating at me. And I have this horrible fear that Eun, our PT, is going to come over next week and go "Aha! You can't do this on your own! See what a terrible job you're doing with him?"

Ack. No easy answers.

10 comments:

sheree said...

I hear ya. Big time.

I feel the same way ALL the time and while we have therapy a few times per month, I still feel like Gabby's progress (or lack thereof) is soley dependent upon me. The guilt always gets me. Always.

I think this is just par for the course honestly. I am sure there are parents out there signing their kids up for EVERY therapy there is and they STILL feel guilty.

We do what we can. If therapy once a month is what you feel is right...then it's right. Is Finn happy? That's what matters most.

:)

heather said...

Guilt is such a huge part of motherhood. We all know we could be doing more but truly cannot give 100% all of the time 24/7. It was normal for Morgan to have times where she progressed and times when it felt like months and months where nothing changed. The first few years are rough because of the constant question, "Is she walking yet?" I honestly got asked that every stinkin' day of her first few years. And I always had to answer, "almost. She's really close." That answer got old after a year. But it was true. She was really close for a very long time. I think the biggest thing is just to make sure Finn is using proper technique when he is doing things, like crawling, sitting, getting to standing, etc. Morgan wouldn't bear weight for such a long time. She also completely refused but ya know what. You'd never know it today. She walks and runs and jumps and dances and does everything gross motor that her friends her age are doing. He'll get the gross motor stuff. And heck...I think he's ahead of most kids with Ds that age. Morgan didn't crawl on all 4 until she was close to 2 years old. She loved the army crawl and did that for almost a year. He seems to have great muscle tone and I think he'll surprise you with how quickly he reaches all of his milestones. Oh...and he is absolutely beautiful. I mean, amazingly cute.

Tara said...

Take a breath. I didn't do a search, but I'm pretty sure you have blogged about Finn plateauing and then suddenly having a burst of progress. I know that's what Eon seems to do. I'm sure he just feels yucky right now and he'll get there.

Kudos to you for nursing the little guy again, btw! That's super!

Brandie said...

I'm sure being sick has a lot to do with him not wanting to stand. When he's feeling better he'll be eager to keep up with his siblings. I remember Goldie going through a time when she wasn't progressing. I felt like we did the same thing every week with the PT. Their were also times we took therapy breaks and she made a lot of progress on her own. It all works out :)

Sasha said...

You do the best that you can do and if you need to you adjust. So if you need the therapist to come in it's okay. She should be understanding of it. This is our lives not our jobs. I think just be honest with her and move on with a plan. For me personally I need the therapy to keep me on track and focused to do what I have to do. It also helps because I don't think I push Wysdom enough, so the therapy challenges him, whereas I tend to keep it more at a play level. Best of luck with your choices. Don't beat yourself up over this. You are a great mom..look how concerened you are.

Mel said...

Luke has therapy every week, and he is doing really well speech-wise and cognitively at the moment, and nothing much walking wise. I am frustrated. He is not. He resists my efforts, and does things he is interested in. They are heading towards being two, and I can see it coming head on! I want to have him walking by then- who knows why- and he always looked to be on track, but now... He's been sick too, so I guess that is part of it. Remember the older kids are worth heaps of 'therapy' and modelling is powerful. They are only little once, and although we moved to access better and 'more' therapy, and I do feel less worry about Luke because of that, the style of therapy also has a lot to do with it. Little bits here and there which naturally fit with my parenting style is what I end up doing, and I'm sure you do heaps of great stuff every day. A loving, busy home is worth so much.

Mindy said...

While Liam is in weekly private therapy right now, I do not work with him at home much at all. I have pulled him out of therapy at different times because we needed a break. I didn't work with him at home then either.

I play with him, I read to him, I do what moms do.

I am his mother, not his therapist. The same goes for you. You have to do what makes you happy. And sane.

Jaida said...

I don't know if you ever considered asking for clinic-based therapy, but I felt a lot happier when we made that move (my son was about 16 months). The therapists are great, he is with kids of varying abilities (though one therapist for each kid) and he has so much fun with it. He hated therapy until we started going there.

Also - one thing to consider. If you would like Finn to be in mainstream school with his typically developing peers, it becomes a bit more important to help him stay on track with milestones. The school should work with you regardless, but I think it helps if they are in the ballpark with their peers.

I hope the therapists you have had don't actually give you the impression they think they are "fixing" Finn. At least the experience we've had has been that everyone working with our son really just wants to help him achieve.

starrlife said...

Worry is normal always lurking and sneaking up and biting us on the ass. I enjoyed our therapists- I got to talk about my daughter as much as I wanted to, I got to hear a different perspective, I got ideas and reassurance often. Our therapists were positive people who looked for strengths- you can demand that you know. Perhaps you haven't found the right one yet? Everyone here commented about plateau's- it's true, so true- just when you're not looking....

Alycia said...

I am sorry you are struggeling right now with this... You have always been your worst critic Lisa. It has only been a month... Your decision right or wrong whatever you decide is not going to change Finn's life. It was only one month. If you really feel that maybe the P.T. was actually helping more than you thought than I have no doubt that you will go back to once a week. You didn't make a decision that is irreversable. Don't be so hard on yourself. Maybe it is that Finn hasn't been feeling well. Maybe give it another month and then go from there.

Also, when I read “ Because I'm no special parent by any stretch of the imagination.” I actually chuckled. I literally make a chuckle sound out loud. It’s funny how people always fail to see things in themselves (both good and bad things). You were a special parent before Finn, before Lilah, before the twins and I am sure before even Joey (although I didn’t know you). You were a special parent Lisa the day you became a mother. In fact the word special does not even do you justice. “Special: distinguished or different from what is ordinary or usual.” Ha! No, you are not a special parent. You are phenomenal. “Phenomenal: highly extraordinary or prodigious; exceptional.”