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Wednesday, May 21, 2008

She's my two year old!

Yesterday was one of the tough ones.  Yesterday was Grace's annual review for Early Access (her therapy services provided by the school system).  Our living room was full with her team.  A packet was handed to us- it described to us Grace's "abilities" - 3-6 months seemed to be all over that paper - the phrase scattered up to 8 months made me breathe a sigh of relief.  Each team member then proceeded to tell us that they think they will be cutting services to Grace because she's doing so well.

Well?????  Functioning at a 3-6 month level at over two years is well????

It's such an unfair process.  We didn't have the info before, we couldn't prepare.  The questions I had prepared no longer seemed relevant.  Why don't they give it to you a week before?   It's one thing to know that Grace is behind, it is a whole other thing to have it appear on paper... be given a few minutes to review it, and then asked for questions.  And in your own home.....  I wasn't wearing shoes.... I should have been wearing a "power-suit."

Had our team lost hope?  Did they not love Grace?  Do they not believe in her?  Are we just their job?  I'm not giving up..... were they?  I cried.  I cried all the way back to work.  I tried to concentrate.

But as always it only took a little time with Grace to realize that it is my job to be Grace's advocate, my job to be her constant, my job to encourage, dream, and cheer.  I only have to do that ---  ultimately what that paper says does nothing to define my daughter.

And as if Grace felt she further needed to teach me, as she and I shopped last night at the grocery store, in the vegetable section, Grace on my hip, swinging her legs... she happened to kick over a pole that holds those plastic bags for your vegetables and fruit.  Anyhow, the roll of bags went flying the pole made a big noise - and a woman came rushing over to help me.  She pointed at Grace- poked her in the tummy and looked at her warmly saying.... you did this didn't you!  I wanted to yell -- Yes she did!   I love her!  I'm so proud of her!  She's my two year old!   Instead I said -Yup it was her - with what I imagine was a huge goofy smile on my face. That's the story I will remember - that I will tell her - and that I will tell other people when they ask about her.


Joy said...

I read this again, alllowing myself to be transported back to Stross' earliest days. You are wise to listen to your instincts. You know the level of services Grace needs better than anyone. The agency's reaction may have more to do with budget cuts than anything else. I've often wondered if a parent's attentiveness can work against us. When they have to find places to cut, I've wondered, do they justify cuts by choosing children with attentive parents? Remember, you can request a new meeting. I've actually dared to say aloud to service providers, "You aren't giving up, right? Because he really needs {fill in service}." Again, your instincts are sharp. I can tell by the way you share your thoughts in your blog that you are Grace's most effective advocate. My thoughts and prayers are with you as you search for the current that propels you forward.

Anonymous said...

Joy and Kevin,

Hang in there. Grace is doing so many wonderful things, I look forward to every post and smile at every picture and story. Yoga in the bathtub? I can't even do that! Take a breath, come up with your new and improved question list and then ask for a follow up meeting. Have specific ideas of what you'd like to work on with Grace, its the teams job to figure out how to achieve it. Remember, you are loved and suppported!