Thursday, June 20, 2013

Tomorrow is IT!

Last day at his school.  Next year, some of his classmates (and his teacher from this year) will be with him at his new school.  I will miss the teachers and the students we won't see.  I am delighted that he will have the same teacher.  She has worked so hard with Connor this year, and you can tell he's getting better at expressing his choices with the constant work.

I will not miss the stupid nurses, the insensitive administration - I am happy to let them roll off my back. 

Most of all, I will miss the children I haven't met at the school because they always embraced Connor and his classmates.  The future students of the school we are leaving will be missing out.  BIG TIME.

Enjoy the first night of summer, and tomorrow (for those of you here) the last day of school. 

Wednesday, June 19, 2013

Snuggle Puppy

This is Snuggle Puppy. 

Many of you may be quite familiar with Sandra Boynton's oeuvre, and "Snuggle Puppy" is one of my favorites of her books. I don't recall if I picked it out, or if it was a gift at the baby shower, but we've had it as long as we've had kids. Then someone else gave us the book and recording in a larger anthology, and Eric Stoltz sang the song (swoon, it's Keith!!). 

At Christmas, 2004, his first one, Connor came home from daycare with a small bag tucked into his regular bag, and in it was this small stuffed animal from his main caregiver at daycare, Ms Regina. Ms Regina was critical in our lives because she helped us learn that there will be many different people who will love Connor only for who he is, and nothing else.  The first few days of daycare were difficult for me, just as any new mom.  I had called the center when he was diagnosed while we were still only on the wait list. I told them that he had some serious problems that would require extra care, and that we understood if that would prevent him from being eligible any more. I didn't want to take up space on the wait list if he couldn't go there.  Oh, that will be fine, don't worry about it, the director told me.  About two months later we were off the wait list, and into the deep end. 

I am lucky that the day care was only a few blocks away. I could go nurse a lunch and check in.  Regina was given immediate charge over Connor.  She tried to nickname him Connor-Bonnor but that did not stick.  So she went with the next most obvious nickname: Homeslice. And she loved him. Love with a capital L. Her notes on his day were hilarious, as she celebrated every possible thing her Homeslice did. She called me at work to tell me he was growing a tooth in the middle of his mouth. He wasn't of course, but her concern swallowed up her reason, and she called me before checking it out. 

He had burped up some milk solid. It was stuck to the roof of his mouth. We laughed for a while. 

Then she gave him a Christmas present. I'm not sure if she gave one to each of "her" kids. 

So many things given to Connor have been co-opted by his brothers. They have been taught to ask and to wait for him to wave his hand to indicate it's all right. They are never allowed to take Snuggle Puppy from Connor's room. It's the one tangible link I have to Regina, who no longer works at that facility. I wish she did - I would take him to see her. I cannot imagine how she would react to seeing him. On his last day of daycare, he sent most of the day back in his old room in her arms. She sat in her rocking chair, holding him, whispering in his ears, and letting tears roll down her face. I couldn't even speak to her when I picked him up. I was 6 months along with Drew and had the teensiest grip on my emotions that day. It was my first experience saying good-bye to people who had proved me wrong about how he would be accepted in the regular world. My mom was with me, and she kept saying in a low voice, "Just keep going," and helping me make sure I had all the things that had accumulated there for him. Eventually, the director came by to say good-bye and told Regina kindly but seriously that she had to pull it together or go home - she was scaring the children with her distress. 

In many ways, I miss Regina. At the same Christmas, we gave her a calendar with pictures of him, just as we gave many other family members. She told me after New Years that her husband wanted to know why they suddenly had a picture of a little white boy in their room. That told me all I needed to know about how she felt. She kept his picture in her room. 

So Snuggle Puppy stays in his room. 

Thanks, Regina. 

Monday, June 10, 2013

Been a while

It's been a few weeks, and I'm sorry for the quiet. I suppose my brain needed a quieter place for a little bit. 

Today, I got a call from the school nurse at Connor's school. She was calling to ask me to provide information for her to use in his transition to Strathmore next year. Except he isn't going there. And he isn't going into 6th grade. And he doesn't have a private nurse with him at school.  And people wonder why I'm not happy with the administration at his school? They cannot even keep Connor Wright, rising 4th grader moving to Barrett straight with some other child whose last name is White, is two years older, and has a private nurse at school with him every damn day. 

The good part - I don't have to track down anything for school. The bad part - they are hiring medical personnel who cannot keep their most health-sensitive students straight. 

Meanwhile, any of his actual doctors we see for him, all of whom have many hundreds of patients, remember him, why he's there, that he has younger brothers, that his parents have a defense mechanism of humor in the office.  And the nurse, who is there every day and spends more time with FLS kids (mostly sending them home) can't keep White and Wright straight. 

Is it any wonder I'm so done with his school?

In other, less angry white mother news, the Pig Roast is this weekend! We love the Pig Roast. I'm going to go with Lee to get the pigs this year. Lots of new firsts in 2013.  I'm not sure this one was predictable. 

Also in the un-angry category is that lately the boys have taken to snuggling with Connor and picking stories for us to all read together at night. They climb on his bed, snuggle around him, make sure he has the one stuffed animal that is not community property next to him (maybe I'll blog about that animal next time?), and we read picture books.  Connor clearly watches the pages. Then they awkwardly hug him, or sweetly kiss his forehead and wish him a good night. 

We stomp off to another room to read other books, Connor tucked in nicely. 

Okay, it's late. You should probably go to bed. I should. I expect morning will come, appalling and early as usual, and Tucker will bound into my room and call me something indiscernible because that's what he does.  And Drew will come downstairs and request that we leave him alone because he's just not hungry for breakfast yet. Because that's what he does. And I will try to not speak until I have my first swallow of coffee, because it makes me rational where there was entropy.