Monday, July 09, 2007

I Don’t Post Because It’s Hard to Say

Today, I met with the day school my other kids attend to see if they felt it would be beneficial – for D. and for them — to enroll D. there in the fall. He hasn’t been accepted at The School yet, and maybe that’s for the best. Maybe there’s a reason. Maybe this is meant to be.

I scheduled this meeting with the director of the early childhood program and requested that D’s current teacher be present.

I began with high hopes.

“As you know, D. hasn’t currently been accepted at The School. That’s something that we can work on, if necessary, but we figured that since D. is here for the summer, and since we haven’t gotten phone calls or notes home alerting us to any problems with him, we thought we would pursue enrolling him here in the fall. Now, we know that D. has special needs and that he is different from the other children, and I really need you to be honest with me here. If you think there’s no way he could possibly participate in that class next year, this is the time to say it. And understand that if we enroll him, it would be with a shadow.”

The teacher allowed that with a shadow present, it might work. She was not unkind, merely realistic. “He doesn’t come to circle time ever,” she said. “And if he doesn’t want to do something, you can talk yourself crazy and it won’t make a difference. He doesn’t participate in many of the activities we do as a group.”

The director turned to me. “What does he tell you about his day here?”

What does he tell me about his day? Well, let’s see. Nearly every day, I say, “D, who did you play with?” (Pause for answer that doesn’t come.) “Say, ‘I played with…” And D. responds with, “You want to go see Daddy?” or “Here’s Baby J!” or “It’s a garbage truck.”

Songs? Davening? No, we see no evidence of that. He knows the names of the teacher and the students, but he doesn’t know – or at least, he is not able to share – any of what he does at school with us.

In the end, the director told me that she would be happy to have him in class, but she wants to make sure that I would be happy. Would D. really gain anything if he went through another year of not comprehending circle time? Would I survive constantly measuring him against his classmates?

A brief aside: I have a friend with a child a little bit younger than D., in his class. She constantly tries to minimize his delays. “My daughter does that! He’s just being three. But look how far he’s come!” I assume this comes from kindness, but it drives home the point that no one really gets it. Yes, he has made progress, but when he is STILL scoring ONE TO TWO YEARS BEHIND IN MOST AREAS — this is not good.

Then I came home and told Mr. WG about the meeting. I said, “I think we should pursue getting him into The School. I think he needs that.”

Mr. WG announced that The School is clearly run by a bunch of MORONS who wouldn’t know chromosomes from mitochondria, and they already said that D. wasn’t a good fit for their school, which OBVIOUSLY means that they don’t want to work hard, and if they are a school for special needs, they should understand hard work, and WHY OH WHY would we even CONSIDER allowing them to ATTEMPT to educate our precious child.

It was a mildly emotional discussion, as you might have gathered.

This is my life lately. I think I know what I’m doing, and then something throws a wrench in the works and I’m clueless, and it’s making me nuts.

One day I think D. is making incredible, amazing progress, and the next day it’s, “D. do you want apple juice or milk?” And he says, “No milk.” And I say, “OK, so apple juice.” And he says, “No apple juice.” And then 15 seconds later, he’s drinking apple juice from the bottle.

In the end, sometimes I don’t know if he’s really any different now from the way he was two years ago, dragging chairs around to get the Cocoa Puffs, and not doing much more than that. And I don't think there are words in existence that convey the intense pain I feel as I read that sentence.


Anonymous said...

Oh, WG. My heart goes out to you.

Anonymous said...

WG, I'm so sorry you are dealing with this pain.

WriterGrrl said...

Thanks, guys. It helps to have you on my side!

Unknown said...

I've been reading your blog for about a year now and I must say, your strength and fortitude are inspiring. You're an amazing woman and mother. Thank you for sharing your stories and your life.

Dramalish said...

Ugh. I'm sorry this is so hard. It's not fair. You're such a good mom. I hope if the School is the right place for D that it will happen and be successful. And if it's not the right place, I hope the answers come easily.
Or more easily.
Thinking of you.

Mary P Jones (MPJ) said...

Big hugs! Oh, I know how it goes... These decisions are hard and painful -- the progress is hardly noticeable -- and people's attempts to be helpful or cheerful or sympathetic just make you feel alone. Bleh!

My son has never been able to tell me about his day either. Sometimes he comes home cranky, and I know something went wrong, but I'll never know what. Sometimes he comes home giggling, and I know something went right, but I'll never know what.

The Gwench said...

WG, this is my first time on your blog and my heart goes out to you. I'm reading one post after another and can't stop. And thank you for your sentiments on Dramalish's blog. I'll keep you in my prayers as well.

WriterGrrl said...

Really, I can't tell you how much I appreciate your words. Things are definitely looking brighter in the morning, and I'll get it all written up and posted soon. In the meantime, thank you all.

Anonymous said...

I'll be thinking of you.

r22alexis said...

WG... I completely understand what you are saying... my child also has Sotos Syndrome and it is the worst thing in the world to not be able to help them... you really do feel so helpless. We now have 7 doctors that he sees on a regular basis. We also have 8 therapists for him. I am lucky to have found a great school for him but we now have to take him out because it is getting too expensive...however, he will still be attending the IEP program in the Fall. I know what you mean about the whole school thing, when we were looking into schools they basically told us that they would not take him b/c he had problems and they did not want to deal with it. People are just so mean and i don't really blame them b/c they do not know anything about their conditions..
On top of Sotos Aidenn was just diagnosed with Autism... i am going crazy... How do you cope?