Monday, August 30, 2010

IEP Tomorrow

I won't say that it's make or break, because there are always alternatives, other options that we can choose. We are in-tune with who Lilly is, what her needs are; we would do anything to make sure she gets her needs met.

And she is SUCH a good little kid. She is funny, sweet, silly, mommy's little girl and daddy's little angel. She is learning the alphabet with such zest that I never had imagined 2 months ago before I taught her a single letter (besides the L that her name starts with). She is learning to swim, and with her floatie wings can go from one end of the pool to her daddy at the other side. She has a passion for life that I am often envious of: watching her at the Broadway production of Mary Poppins and at a Yankee's baseball game last week were both moments to treasure forever - she was completely thrilled with both events. Even going to church yesterday was a fun adventure; even though she goes regularly and knows the routine, she was so excited to get in the line for her blessing at communion; she literally danced down the aisle like she was waiting to see Elvis (or Zac Efron) or something; the priest was probably a little surprised as most people don't have the hugest grin on their face when he touches their head.

I love doing things for and with my girl. Jon and I would give her the moon if she wanted it, and I am grateful that we are involved parents and that she's an easy kid to figure out. Elmo? Check. Milk? Check. Disney vacations? Check. It takes so little to make the kid happy.

So tomorrow's meeting isn't the end of the world for Lilly, but the stakes are still pretty high.

$20,000, for example. And the proper preschool education of our child, which is the foundation to her career of learning in school. And her self-worth: a couple random individuals who have never met Lilly looking over some assessments to make a decision on what is best for our child this year.

I am hopeful but not overly optimistic. New York may be fashion forward, the financial capital of the world, with millions of people and restaurants and ideas. But in the limited experience that I've had over the past couple months, it is more backwards than any city I've dealt with. From an educator asking me how she can "break the news" to Lilly's 4 year old class about why Lilly "looks so different" (seriously? I still think that deserves a punch in the face); to taking months to get into the "system"; to segregating every type of need so that it is most unusual for a child like mine (who has thrived in typical daycares/preschools) to participate in a normal class. One local mom with a child with DS shared with me schools asking her if her child lived with her (she was 6 years old! better ship her off to the institution I guess?) and the state's suggested placement was at a "school" for kids with major medical needs - she said half the kids were on IV's when she toured the school. And I've never heard the phrases "low functioning" and "high functioning" so much in my life - can't kids just be kids?

There is not a worst case scenario; I mean, the real worst case scenario is that someone who's never met my daughter tells me how limited she is (which I know is not the case) and we respectfully disagree and go through our life savings to privately fund Lilly's school this year. We are lucky that we have options. But part of me is hoping that the educators get a good night's sleep tonite, eat their Wheaties in the morning, and see Lilly (on paper) as the kid she really is: a good little girl who needs some help in some areas, but who doesn't need to be segregated and separated from her peers. That she is a bright child who is a motivated learner and who just wants to feel like part of the group, not like they are making a huge accommodation for her just to participate. So we'll see. Wish us luck and say a few prayers.


Angi said...

I really had no idea that NY was sooooooooo behind times, reading your post made me think of my mom helping my two brothers w/ DS get mainstreamed when it was unheard of!!!(that was 25 yrs ago!!) You have your work cut out for you but in reading a bit of your blog I have NO doubt you folks can handle it, your daughter is beautiful and sounds like such a smart cookie too!

Lil'Sis said...

Let us know how it goes, you're in my prayers today, patience and faith sister:)

lots of love,