I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Tuesday, May 4, 2010

Feeling A Little Frustrated....Again...

Today I was on a field trip to the Richmond Zoo with Zach and I wasn't going to be back in time to take Alex to Physical Therapy so it was up to Aaron to take her and pick her up. God love 'em he does an awful lot for our family, but when it comes to Alex and anything medical or therapy wise, it normally falls on me. So I get home from the field trip and it also happens to be a day that Zach has a play date with a friend from school that has never been here, nor has ever experienced Alex, and he is clearly unsure of what to make of her...anyway...Aaaron walks in from Alex's physical therapy appointment very frustrated. First words out of his mouth, "We are not doing enough with Alex's walking and Shannon says we're basically throwing all of the time and money we've spent on her intensive therapy out the window." Deep breath on my part...first, I'm exhausted from the field trip with Zach and trying to wrangle four boys at the zoo all day, second, I have not been feeling well the last two days, and third, I totally, whether he means it or not, feel completely attacked that this is a personal jab against me since I'm pretty much the one that does all of her physical, speech, occupational and feeding therapy. I ask him for more details, but before he can even explain, I'm on the defensive. I've been feeling very overwhelmed lately, and I already know this conversation is not going to help matters. For heaven's sake, not to sound too sanctimonious or anything, but I have A LOT on my plate. Alex goes to school five days a week, I also work those five days a week and manage my 'typical' five year old's Kindergarten schedule. I take her to therapy three days a week, spend an hour each night preparing her food, and Zach's lunch for the next day, homework, housework, laundry, have been working on her picture exchange communication, her sitting, her standing, her eating, her drinking, her overall PT, and somewhere in there I want to throw in just being her mom for heaven's sake and not having to wear some sort of therapist title...how much more can I do? I'm trying to maintain a 'typical' family life with my ever demanding, but very loving, very needy five year old, I'm trying to be a mother, daughter, sister, aunt, friend, classroom mother, neighborhood board member, office manager and every other title I can fit in, and now, all of sudden, I'm thrown back to when I realized Alex wasn't 'typical' and I'm feeling so overwhelmed and frustrated again, a place I really haven't been in a long time...a place I don't know where to fit in.

I called Alex's PT and had a talk with her tonight and I felt a lot better after we spoke. She doesn't feel like Alex is regressing, but feels like her potential is a lot further than its ever been, and that's when then I realize that maybe that's part of the problem. Alex has NEVER, in eight years, been so advanced in so many areas that I just honestly don't know what to focus on. Shannon reiterated to me that I need to change things up, and that I just may need to focus on different goals on different weeks, something I'm clearly not used to doing. I have Alex's IEP meeting in two weeks and am hoping to incorporate some of her PT goals into her school day so I can focus on other areas at home. It's so exhausting trying to figure everything out and making sure I'm not dropping the ball in other areas.

Sorry for the down post, it's just where I'm at right
now...

3 comments:

Perry-Carlassare House said...

I've been following your blog for the last couple months. I have a two year old with AS and a "typical" 8 year old. You did a great job summarizing the frustration that so many of us feel. It gets tiring and overwhelming trying to fill so many roles all at once. Keep posting- it's good to know that others feel the same.

Christy said...

Donna,

I think you did a great job of illustrating just how hard it is to have a child with complex medical needs. Hang in there. Sounds like some good girl time is in order. Let's get that scheduled!

Anonymous said...

You are loved! AND you are a fantastic mother, daughter, friend, therapist, classroom helper, community advocate and any other title you want to throw in. And I should know! Ellen