G started kindergarten this year. I got her all dressed up the first day and sent her off to meet new friends and start her school "career". Little did I know that 100 days into the school year, she will need more help than just her classroom teacher can provide. That the principal and social worker and occupational therapist will all know us by sight.
It seems that G's fine motor skills are delayed. Her handwriting is sloppy and not evenly spaced or written. Quite frankly, she would be thrilled if she never had to write a lower case letter again - for whatever reason, they are harder for her.
Focusing is an issue. Staying on task. Following multi-step directions. We were even told her coloring and artwork isnt up to 5 year old standards.
When I was researching Marfan Syndrome, during the pregnancy and even just last year, I always focused on the cardiac, vision, and skeletal issues - things that affect G directly. It never occurred to be to be concerned about how she held her pencil or if she was a state champion paper-cutter. Guess I should have paid more attention to those things.
Her school is reacting the way I would expect - they see a child struggling and they start all sorts of assessments and therapies from OT to psychologists and speech therapists. Today we met the school social worker - sociocultural interview. If these things will help Grace thrive in school, I am all for it.
I am her mom. I will fight like hell to get her the resources she needs to thrive in school, whether its as simple as larger font books and occupational therapy to develop her fine motor skills or if it means finding a school that has smaller class sizes and can give her more one on one attention. I will fight for what is the right thing for G, regardless of what it is.
But inside me is a small (but loud) voice that just wants to stomp her feet and throw a Mommy-Tantrum. WHY!? Why my baby? She already has to deal with Marfan cardiac, vision, and (minor) skeletal issues - why does she need to deal with this too? Doesn't she deserve a little break so that something is easy for her!?
2 comments:
I am sorry Grace is having a hard time. It's not uncommon. Because of our double joints, many of us were delayed in the fine motor skills. If I can give some advice, don't let them force her into holding her pencil a specific way, but instead consider helping her write better with whatever grip she is comfortable with.
Grace is going to go on to do great things. It's hard with the adjustments now, but you're a smart, capable momma and Grace is going to do great. :-) This will get better. And, if you're looking for resources, Blue Smith and Nancy Giacone really know their school stuff.
Good luck! :-) We're thinking of you.
http://marfmom.com (open ID doesn't let me put in my website anymore for some reason)
My son was diagnosed just before his second birthday. No family history. He's 9 now. I remember the first time we really explained Marfan Syndrome to him. He was around 6. I was so nervous but he just accepted it. He knew he went to the dr. freqently, and even now he's very accepting. He said to me the other day, "what do I have again? Claustrophobia?" Had to laugh.
Anyway, he gets PT & OT at school and so far can generally participate in PE. The NMF has a fabulous document on PE for kids with Marfan by Helen Iams. Just google it if you are not already familiar with it.
All the best to you - maybe we'll meet up at a conference sometime!
Shawn Carstens
Alfred, NY
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