Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Tuesday, January 26, 2010

500 Square Feet

500 square feet can serve you well sometimes, especially as the parent of a "preschooler with disabilities." Now I know some of you are sitting there with the old raised eye brow wondering what on earth I am talking about.

Eliza and I live in a small apartment, a very small apartment, a 500 square foot apartment. It is a happy, cheerful apartment. It served me well during my single, childless years since it is rent stabilized (only New Yorkers know the value of this) and was ten steps or a ten dollar cab ride from some of the best restaurants and funnest (is that a word?) bars in NY.

It is also 500 feet from the NICU that Eliza lived in for 100 days. I can see the NICU windows from my bedroom window.

But do you know the real value of that 500 feet? It means that I live in a city that does not make me beg and scrounge for EI or CPSE services for Eliza. The worst meeting I have ever sat through was 2 hours but that was only because of a bum copy machine. Eliza has never been denied any service she has needed. I have never had to beg or argue for a service. I am shocked on a daily basis when I read about families, not 50 miles away from this 500 square feet who have to go through untold number of hoops just to get some speech therapy. Now I have admittedly been lucky in that Eliza and I have always been part of YAI, but that fact alone cannot account for the disparities I hear about everyday.

So the next time someone suggests I drop down roots in the Garden State or high tail it to the "Island of Long" I will as always so "no thanks." There may be a 4 bedroom 2 bath house awaiting me, but I'll take Central Park and great EI and CPSE services any day over yet another bathroom to clean :)

Getting services for disabled preschoolers is kind of like getting good health care. You will never know how much your CPSE or health care insurer truly sucks until you need to use them in a big way.

Here's to hoping that 99% of the readers have no idea what EI or CPSE services are!


Laraf123 said...

Sometimes wisdom means knowing when you have enough. So many of us are always chasing "more". I found your post very inspiring. Thank you.

SpeasHill said...

I second Laraf123's comment!

Sarah said...

The house Erik and I lived in before this was 550 square feet. We had planned on putting Emery in the closet haha.

And I've had to beg for a few of those services on occasion.

I still say let's all move to Saba.

Catherine W said...

I'm not entirely sure whether I would find it reassuring or terrifying to be able to see the NICU windows from my bedroom! We live about five minutes walk from the transitional care nursery where my daughter stayed (the ICU is about fifty miles away) and I still find it hard to walk past.
Definitely, when you have the services that you need with a good provider, it is worth staying put. As you say, much more important than extra bathroom. x

Kate said...

And yet, in a country as rich as ours, it's utterly ridiculous that services vary so wildly from town to town, state to state. Our EI I would rate as 'okay', probably a little above average in terms of their ability to provide services. We start the IEP process later this month and I honestly have no clue how much of a battle it may or may not end up being. Our EI coordinator is optimistic.

therextras said...

ditto Lara123's comment.