Tuesday, March 19, 2013

Therapy Guilt

I have 50 other things I need to be doing but I really feel like writing a blog post... to you mom's who can take care of your kid(s), work full time and manage to blog regularly, my hat's off to you!!

Just to put it out there, I'm a good mom!  I'm a really good mom!  It may sound cocky or something like that, but when people say "BB, you are a good mom"... I thank them for acknowledging it... but you know, I agree.

I LOVE this job!

My day's are crazy!  Balance is moment-to-moment and only works with planning ahead.   I feel like I have to prove myself at work, that I can do my job with my home commitments... but at the same time, I will flex my schedule as much as I have to in Ella's best interest.

My goal is to blend it all together and make it work... giving Ella everything she needs while taking care of business.

This week we are having 'extra' therapy sessions, on top of our regular 5 home therapy sessions.  The 'extra' sessions are outside of the house.  This therapy, ABM, is well-regarded in the micro-preemie community.  The therapist is only in town 1 week each month and recommends 2 sessions/day during that week.

Between Ella's regular therapy schedule and my work schedule, 11 therapy sessions in one week isn't possible, not for me and not for Ella (there is only so much she can take).  Drawing that line does NOT make me a bad mom.

I agreed to one session a day for the 3 days he is in town.  That makes a total of 8 therapy sessions this week.  Today, for the first time in months, I needed to be in the office (rather than work from home). I went in after our 8am PT session at the house.  I made it clear that I would have to leave at 3pm to get home, get Ella and get to ABM therapy by 4pm.

This is where I can't explain what's happening.  I do not understand ABM therapy.  I have asked Ella's OT, PT, ECI coordinator, eye doctor and neurologist, none of whom have heard of it.  It has something to do with learning and stimulating the brain's response.  But this was our second session (we did a free "intro" session last month), Ella fussed through it, like the first (after all of the talk).  He puts his hands on her almost like accupressure - without pressure from what I can tell.  I've asked what I'm supposed to expect I don't feel like I get a straight answer.

I just don't understand.

And because Ella was fussy today, he did the hands' on thing, but then recommend that I find another time this week to bring her back.  But I'm bringing her back 2 more times, already on the schedule... but he wants me to bring her back at another time when she will be more receptive because he didn't consider this a real session due to her fussiness.

But we are coming back 2 more times this week... let's see how it goes.

But look at your schedule and see when you can bring her back.

But I'm bringing her back at 8:15 tomorrow...

And so on...

If I knew what to expect... if I knew this would be beneficial for her, I would go out of my way to rearrange my work schedule to bring her back again.  PT/OT... I can see and understand what they are doing and what they are trying to accomplish.

Even Ella's neurologist said that while he's not familiar with this particular therapy, most specialized therapies will produce some kind of benefit because it increases the frequency of specialized support in a given area.

The only thing is.. I have no idea what kind of specialized support or what given area this is supporting.

There is a term in the micropreemie community referred to as 'Therapy Guilt'.  I think that speaks for itself.  I am a really good mom but I am still trying to figure it out as far as therapy goes.  While I'm trying to figure it out, I don't want to lose ground... but what I do want to do is figure out what is right for Ella.

And this mom's instinct tells me that finding a good music therapy program for Ella would be the best kind of specialized therapy for her at this time... I really don't know anything about music therapy.  I do know that Ella has a keen sense of hearing and responds greatly to music.  I never knew the ABC song could be so mesmerizing, but for Ella... it's practically a cure-all.

By the way... after only 6 1/2 weeks, Ella graduated from her helmet!  More on that (hopefully) later.

*My apologies... my usual re-reading several times/editing is out the window.  I'm publishing without rereading after writing at all, not once!  I'd post a picture but my iPhoto is frozen.

8 comments:

  1. WOW! You have so much on your plate! I can see how adding anything else is overwhelming. You are Ella's mom and are doing a wonderful job of it. I know that you will make a well-thought-out decision for Ella (and your limited time).

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  2. Wow is right! I am glad you go to share this with us. And only 6 1/2 weeks is awesome! That therapy seems a little strange to me. I am getting ready to wade a little bit into the therapy (and several referrals to specialists) territory myself and feeling overwhelmed already. You are a good mom and I a glad you can recognize that.

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  3. Yah for helmet grad! :) How is she liking it?

    You are a busy, busy family! Can the therapist not explain the benefits of ABM? How will you know if it's working or not?

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  4. You are a good mom! Great mom!! I was just thinking of you & Ella today & can't believe her birthday is coming up already! Great news about her helmet!!

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  5. Happy to read that she is out of the helmet. I haven't heard of this therapy either, not that I'd know a lot about it but I could ask my cousin Nikki if her daughter Kenna does it. Kenna was a micro preemie too.

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  6. Maybe try asking the therapist to write out a couple of goals for the therapy. Whatever it is he's trying to do should be measurable in some way, otherwise how do you (or he) know it's working?? And the goals should be measurable in terms of what ELLA does, not what the therapist does! As a former special ed teacher, any goal that a "dead man" can do(i.e. so-and-so will sit quietly for 5 minutes at a time, or so-and-so will comply with range of motion excercises) is NOT a good goal! Good luck... and yes, you most certainly ARE a good mom!!

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  7. Finding the right therapy is always the best option. If she doesn’t respond or is uncomfortable with the current one, then it might be detrimental rather than helpful. Since she really responds well to music, finding the music therapy that fits her well is a priority. You can probably look for some that focuses on sound therapy that uses other sounds other than music.

    Russell Dill

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