Friday, January 21, 2011

They tell me when to grieve.

One of the things I don't like about many 'parenting special need kids' books is the alarmist predictions.  I feel like so far, our life has remained 'normal,' and Fragile X hasn't changed our daily life much.  However the books like to TELL you when you will be upset, at times like birthdays, academic evaluations, holidays.  They are calendar reminders that 'something's wrong, don't fall into a false assurance of normalcy, don't forget something's wrong... something's wrong...something's wrong.  Sometimes I feel like I get sad just because the book told me it was time to be sad.

Things that have made me sad lately.
1. Looking for a gift for a similar age child, realizing I don't know what a 'typical' child his age is into.  I see toys marked for his age and I know he wouldn't be able to manipulate them.  The reminder 'something's wrong' bell rings.
2. Seeing the progress of his peers, where he should be, what he could be doing.  This doesn't always happen in my day to day because he is 'typical' for us.  We cheer his milestones and are excited by progress, just as any other parent is.  Then suddenly I will realize where he 'should' be, and I'm sad.  And the bell rings.
3. Bridget is his bossy care-taking older sister,  both playing with him and talking for him.  When we are working on puzzles she will intervene to show him, and I remind her to let him do it on his own.  I struggle with this - I want her to be his sister, not his keeper.  I don't want her to feel such responsibility for him. At the same time, her care reassures me.  Bell rings.
4.  Monday is our first meeting with the local school system, beginning planning for his transition from early intervention to public pre-school.  I have been told our school system is one of the best, and in many ways I am happy he will be in a placement where he is receiving services and also with specially trained professionals all day who can teach and guide him academically and socially.
I'm also so scared to send my little boy into the 'big kid' school.  How will he do with such a transition? How will he be treated by others?  Ring ring ring ring ring ring ringringringring............
I'm preparing to be sad because the book told me. 

Something that makes me happy? Owen's ability to charm all he comes into contact with.  We walk through the mall and I see people nudge each other, look adoringly at Owen, I hear whispers of "what a cute baby!"  He befriends the store cashiers, loves smiling at good looking women, and particularly likes all bald men.  Even our cats sniff his nose and greet him in the morning, and I was surprised to see surly teens brighten when looking at him.   The quotes I have most heard most often about him is "He is SUCH a happy baby!"  or "What a great smile!"  Owen's godfather made my heart soar when he said "Owen smiles with his whole body, "  and one of my girlfriends told me Owen was lit from within.   
I take these moments and bank them, let them wash over me and reassure, let them give me hope for his survival in this unkind world.  Maybe my baby came pre-wrapped in his own protection, a nature and temperament of sweetness, kindness, and charm.

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