104 days of kindergarten.  Yes, we count.  Well, we dont count but the kids do every morning in class.  They had a big 100 Days Celebration on Friday. 

On the first day of school, she was so excited to be a school-ager.  New backpack, a whole new wardrobe (cause you cant start a new school year wearing the same ol' things!!), and the anticipation of learning to read and write. 

Wish it was that easy. 

Grace is struggling.  With everything it seems.  She is so smart so why is she having issues with reading?  Why, since she is constantly writing and coloring at home, does she have troubles with those things at school?  And what is it about a classroom full of children that causes her to lose focus?  All questions that we are fighting to find answers for.

Last night, over dinner, she told me all about her visit with Mrs. W., the occupational therapist at her school.  To Grace, its another teacher to help her.  They cut, they wrote, they drew pictures - all this to help her fine motor skill development.  And Grace thinks the pencil holder is the coolest thing ever.  And in the coming days and weeks, she will visit the speech therapist, the school psychologist, the reading teacher, and the resource teacher. 

In all my Marfan Syndrome research, I always focused on the medical aspects - cardiac and eye issues mostly because those were the things that seemed to affect Grace the most.  Now I am quickly learning about the other Marfan related issues, like fine motor skill development.  Apparently, it is not uncommon for Marfan children to struggle with things like handwriting - who knew!?  And in that, we are having to teach the school more about Marfan so that they can help Grace.  Its exhausting but that's what Moms and Dads do - we fight for our kiddos. 

I dont know what the outcome of all this will be.  Will Grace catch up with some additional instruction from these support teachers?  Is it better to have her repeat kindergarten to get more confidence in herself?  Are the class sizes so big that Grace needs a different environment to thrive in school?  Only time will tell, I guess.

I know that my job is to fight like hell for my little girl but I am so frustarated and sad for her that she doesnt enjoy school and that she has to go through all of this.  I realize that she is young, that it is best to get these "interventions" in place now while they are easier to correct but why Grace?  Why my baby who already has so much to deal with - Marfan Syndrome isnt going to make her life easy so why does she have to have a hard time at school too?  Life isnt fair, I know, but this sucks. 

Tomorrow, Hubby and I have a meeting with the school social worker - an interview about our family dynamics and how that impacts Grace.  Sounds like fun, huh?!  And I will use the time with the social worker to find out how we can make things easier for Grace and fight to get her all the help she needs. 


Maya said...

Good luck! I had a lot of trouble with fine motor skills in elementary school: handwriting, cutting, coloring in the lines. Everything but my handwriting got better though, and my handwriting isn't terrible :-) In getting to know many other Marfs, none of us can comfortably use the traditional pencil grip that teachers push students to use. My advice would be to let your daughter hold the pencil in whatever way is most comfortable. Good luck!

And has your family thought about coming to the NMF conf. this year? They have some great workshops on accommodations in the classroom to make school easier and more fun :)

~ Maya @ http://marfmom.com

Rebecca said...

I'm sorry Jaime. This has to be hard on all of you. I hope that you find answers, and that Grace will eventually get to enjoy school. You're right, it's not fair at all. I hate it for all of you.

-L said...

I'm so sorry that you guys have to deal with all of this, Jaime. It really isn't fair :(

jodifur said...

I've been there and it is not much fun. I'm so sorry. I don't normally do assvice but have you tried OT for the fine motor issues? It has done wonders for my son.