Monday, October 27, 2008
Tuesday, October 14, 2008
The Brush Off
Jilly had her speech therapy evaluation on Friday. It was short - had to repeat back words of pictures...brush, bath, train...
She talked the ladies head off. Told her all these random stories...."I take a baf, my parents take a shower" (whoa, hold on a minute there missy, where you going with that story...)
There were times that the lady did not understand Jilly, asked me for clarification. But commented the whole time on what great vocabulary she has. Like Jilly said she is going to be Dorothy for Halloween - therapist had no clue what she was talking about.
But, she doesn't qualify for speech therapy. The therapist showed my her handy, dandy notebook and that the testing reflected Jilly is age appropriate for pronunciation. Falls into the 6 or 7 year old range where she would get concerned, and since she is not 6 or 7 there's no concern. She will send me some handouts on how to help her work on substitutions she's making, like W for L, F for TH, that sort of thing. And I am ok with her not needing speech.
As I was standing to leave, the therapist let me know she would check in on Jilly next year in Kindergarten. And her parting advice was to "cut her some slack".
Cut her some slack? I know she means well but do you know how condescending that comment is? I have heard it before. After all she's been through and all she may go through, cut her some slack. Relax. She's doing fine. She's had 3 open heart surgeries for goodness sakes, give her a break.
Do you think I don't know all that she's been through? Do you think I don't know she's going to have challenges in her life? Do you think I don't know that there will come a time when I won't be able to cut her any slack because she won't be around with any slak for me to cut.
I don't fault the therapist for that comment. I think sometimes well meaning (I do use that term a lot don't I?) people say something to the effect of telling me to relax because they think I'm looking for something to be wrong. I'm not. Her physical therapist made a similar comment every single session. "She's been through so much, give her a break, relax, she'll catch up". It's not like I want her to have therapies that she doesn't need.
I do cut her slack.. but I don't want to sit idly by and hope that things work themselves out. I'm not looking for things to be wrong. She's got enough things wrong she doesn't need more, believe me.
But I want her to have the advantages that every other kid has. If there is a problem I want it identified. I want her to be challenged, stimulated. I don't want her to become a cardiac cripple because people want to pity her or feel sorry for her or baby her because she's been through so much. Sorry, I've seen too many "healthy" kids as teenagers that can't function because there was always some adult in their life cutting them some slack, giving them a break.
Treat her with kindness, yes. Treat her gently, yes. Stop and smell the roses with her, absolutely!
And every now and then I forget. Kind of. I forget that there are some mighty health issues going on in that little body of hers. And I'll look at her and the wind gets knocked right out of me. I'll look at her and I'll remember that she has health challenges that could cut her life short. That things can change on a dime. And I want to cuddle her up right then and there, take her home, keep her with me everyday of her life, never let her leave my arms. Cut her some slack. But I have to clear my head. Remind myself that she's not dying right now. And I have to let her live life, with all of it's pitfalls and craziness. And give her all the advantages she can get to make it in this world for the time that she allowed to be here.
Because she's going to be Dorophy for Hawoween - siwy!
She talked the ladies head off. Told her all these random stories...."I take a baf, my parents take a shower" (whoa, hold on a minute there missy, where you going with that story...)
There were times that the lady did not understand Jilly, asked me for clarification. But commented the whole time on what great vocabulary she has. Like Jilly said she is going to be Dorothy for Halloween - therapist had no clue what she was talking about.
But, she doesn't qualify for speech therapy. The therapist showed my her handy, dandy notebook and that the testing reflected Jilly is age appropriate for pronunciation. Falls into the 6 or 7 year old range where she would get concerned, and since she is not 6 or 7 there's no concern. She will send me some handouts on how to help her work on substitutions she's making, like W for L, F for TH, that sort of thing. And I am ok with her not needing speech.
As I was standing to leave, the therapist let me know she would check in on Jilly next year in Kindergarten. And her parting advice was to "cut her some slack".
Cut her some slack? I know she means well but do you know how condescending that comment is? I have heard it before. After all she's been through and all she may go through, cut her some slack. Relax. She's doing fine. She's had 3 open heart surgeries for goodness sakes, give her a break.
Do you think I don't know all that she's been through? Do you think I don't know she's going to have challenges in her life? Do you think I don't know that there will come a time when I won't be able to cut her any slack because she won't be around with any slak for me to cut.
I don't fault the therapist for that comment. I think sometimes well meaning (I do use that term a lot don't I?) people say something to the effect of telling me to relax because they think I'm looking for something to be wrong. I'm not. Her physical therapist made a similar comment every single session. "She's been through so much, give her a break, relax, she'll catch up". It's not like I want her to have therapies that she doesn't need.
I do cut her slack.. but I don't want to sit idly by and hope that things work themselves out. I'm not looking for things to be wrong. She's got enough things wrong she doesn't need more, believe me.
But I want her to have the advantages that every other kid has. If there is a problem I want it identified. I want her to be challenged, stimulated. I don't want her to become a cardiac cripple because people want to pity her or feel sorry for her or baby her because she's been through so much. Sorry, I've seen too many "healthy" kids as teenagers that can't function because there was always some adult in their life cutting them some slack, giving them a break.
Treat her with kindness, yes. Treat her gently, yes. Stop and smell the roses with her, absolutely!
And every now and then I forget. Kind of. I forget that there are some mighty health issues going on in that little body of hers. And I'll look at her and the wind gets knocked right out of me. I'll look at her and I'll remember that she has health challenges that could cut her life short. That things can change on a dime. And I want to cuddle her up right then and there, take her home, keep her with me everyday of her life, never let her leave my arms. Cut her some slack. But I have to clear my head. Remind myself that she's not dying right now. And I have to let her live life, with all of it's pitfalls and craziness. And give her all the advantages she can get to make it in this world for the time that she allowed to be here.
Because she's going to be Dorophy for Hawoween - siwy!
Sunday, October 5, 2008
Long Live the Queen
As promised here are some recent pictures of the Queen:
This day she dressed herself and had her sister do her hair
And she's very proud of her ensemble
Things got very quiet in the house so I went looking for Ms. Jilly and found her in the bathroom looking like this - she had stamped her face and also stamped the mirror
Taking a bike ride - she has informed me she is too big for this bike and wants a big girl bike from Santa
The rainboots come in handy when she helps me water the plants
And there's your photo update of Jilly.
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