We have a rule around here that you aren’t allowed to say something “sucks.”
It just doesn’t sound very nice coming out of a little girls mouth!
But with having big brothers (who aren’t perfect….can you believe that?!!?) you might still hear that word around here from time to time.
So why pick the title that I did???
Well, becuz this week I had a nice long chat with Miss Josie.
She has been moody and giving us (and her nurses and teachers) an attitude. You can just hear it in her tone of voice.
So I sat her down….and after she got through her bumbling, messy, not pretty cry fest she was actually able to put into words how she is feeling.
(Now I still think that at least half of these issues are hormonal related. And the above picture was back from 2012….but the expressions haven’t changed.)
It boils down to: She is frustrated.
She is frustrated that her body doesn’t work the way the rest of ours do.
She is frustrated that school is getting hard and the things aren’t coming as “easy” as they were before.
(She is on a K level for math and a 1st grade level for reading to give you an idea of where she is at.)
But she tries soooo very hard. And she puts soooo much pressure on herself and hates when she gets things wrong.
So we talked about it and I told her that she shouldn’t get frustrated, that school is the place where she is to learn, if she knew everything she wouldn’t have to go to school. (And since she loves school that made sense to her.)
And I told her that if she is frustrated she is to use her words and ask for help. She should not start crying and giving people attitude.
She seemed to understand what I was trying to tell her.
And then I told her that if she gets really frustrated with her body that she should just say, “Having CP sucks.”
Becuz you know what?
So let’s just call it for what it is.
She smiled at that but then I reminded her that Jesus can heal her body. But until He does we need to just keep plugging along and trying to accept these limitations.
It is really hard for her living with siblings that are all able-bodied. She realizes and knows that her sisters have passed her in reading. She knows that she just can’t do everything. She wants to be able to run around with her sibs. And some would say, “Well, just push her outside and let her watch.”
That is harder on her then if we have her do something she can do and enjoys doing. (i.e. the ipad or building legos)
One part of this journey that is (very) hard is that everyone has an opinion or judges the way we do things.
Just this week her teacher flat out told me that she doesn’t agree with one of the decisions I made concerning Josie and the cafeteria line.
Well, you know what??
I’m her mom. So what I decide goes.
And then at Josie’s IEP meeting this week we were going over Josie’s goals and such (these meetings are so painful) and Mrs. Kline wanted to have Josie go to the “regular” 5th grade art class. The whole “inclusion” idea.
Now imagine me sitting at a table with 3 therapists, a psychologist, Josie’s teacher and the SN coordinator from our home district….so lots of “experts” around little old Mom who doesn’t “know anything.”
Well. I kindly but boldly stated that I did not agree with this decision. Josie already struggles with not being able to do what the other able-bodied kids are doing already. She already puts so much pressure on herself and then for her to be pulled out of the class that she LOVES and can SHINE in to a class of “typical” 5th graders…that just wouldn't be helpful or good for Josie.
And you know what the “experts” said??
“Oh, wow, we didn’t think of it that way.”
“ That is a great point, I can see how it wouldn’t be healthy for her.”
“We agree with you, we will keep her in her lifeskill class fulltime.”
Why, thank you for agreeing with the woman who isn’t an “expert,” who doesn’t have the “degree” but just has some Mama instincts and some common sense to go along with it.
Still not everybody agrees with the decisions we make or the way we do things.
(And trust me, they let me know!)
But I know that I know that we make decisions and do things a certain way for the health of our WHOLE family unit. And also what is best for Josie.
For someone looking in from the outside it can look like Josie isn’t included in everything….and unfortunately it is impossible for her to be able to do everything the other kids can do.
Is she sad that she can’t do it all?
But she knows that she gets to do different things and we make her special things, special.
And unfortunately it is something that she will have to come to terms with….
Unless God heals her soon!