A big talk...

So while this space usually is front and center for Connor, he does have two other brothers who, in fact, I am a parent to, and sometimes, they need to be written about.  Today is one of those days.

When you have a child who is special needs, with a disorder that is uncommon and with few capabilities, you just don't read all the parenting stuff.  It's too depressing.  So you drop that from your must-read list and just get on with beginning to understand how to raise that child.  Then another one comes along, if you are lucky or stubborn or both, and if she or he is not special needs, you still don't read all the parenting stuff.  Because you work full time and you have two children and a husband in an evening MBA program. 

Basically, you wing it.

So this weekend, Drew had a birthday party at the Kettler Ice Center.  He and I have been skating together a handful of times, but this time, I hung back and let him hit the ice solo with his classmates.  It was wonderful.  He did so well.  He's not much of a try-er, but he's pretty balanced on skates, and when he falls down he just gets back up.  I cannot say he is always like that with all his endeavors.  He kept asking me to come out, and I kept telling him he didn't need me any more on the ice because he was skating so well.  Eventually, he held the hand of one of his classmates (she also went to preschool with him) and they skated together.  It was adorable.  Her dad was on the ice with her, but he hung back, videotaped it, and then turned and gave me a lovely smile and a thumbs up.

Time came to leave, and we headed into the parking garage.  We went past a few people at the tailgate of their car.  About 20 feet past, he leaned into me and whispered, "Mom, I saw someone smoking!"

"Did you?"

"Yeah.  It looks cool."  NOT what I wanted his reaction to be.  So I asked why, and he shrugged.  Then, without prompting, he asked me if smoking was good for you.  I LOVE WHEN HE GIVES ME AN OPENING!

No, Drew, it's not.  It's very bad for your health.  When you smoke, instead of inhaling air with oxygen for your body, you inhale chemicals that are poisonous to you in teeny doses, and that hurts your organs in your body.

I was pretty proud of that answer.  Also, I was pretty proud that I did not go full Mama-lecture.  We just kept walking and talking.  Like a pediatric Aaron Sorkin script.  We're walking, we're talking, we're giving Big Tobacco the boot. 

"I will never smoke," he decided unilaterally.  I didn't even have to tell him additional, more personal details, like about his grandparents who still smoke (though his father did) or his grandparents who quit smoking (one of whom we almost lost to smoking on a March day a long, long time ago).  It was a shockingly simple discussion, and I know it's just a beginning of opportunities now that he's clearly noticing the world around him in a much more detailed manner, just as he should be.

When I was his age, my absolute favorite treat at the snack bar at the pool we belonged to was a package of candy cigarettes.  We would scrounge up the $0.25 they cost, and then run over during adult swim and buy a pack, letting them hang from our lips as we'd seen the grown-ups do with real cigarettes. 

I still enjoy eating them on a rare occasion, though my teeth feel about twice as thick from the pasty gunge that ends up coating them after I down a pack.  But I won't even let me kids know they exist.  I know they will love literal sticks of sugar, but I don't want them equating them with anything pleasant.  For their own health.

Happy Music

So yesterday, my guest blog was published on anglobaptist.org and it's out there in front of a new audience that I am utterly unfamiliar with.  I'm feeling very exposed.  To balance out the sad darkness in that posting, I spent the morning listening to Marshall Crenshaw's eponymous 1982 debut album.

When I was in college, I was in an a capella group called the Virginia Belles.  At first, I wanted to be in a different, co-ed group.  I was devastated when I did not even get called back to that group.  It never occurred to me that my voice part (alto verging on tenor) wasn't needed in that group.  Then, one day, my next door neighbor, who had just joined the Belles, told me at dinner that they had lost an alto and would be holding auditions.  In one of my most self-serving moments, I thought, "Okay, I'll audition and use it as practice so I can get into the other group the next time."  My dear Belles who may be reading this now, I am sorry.  I signed up and told NO ONE that I was doing it.  My neighbor, Becky, knew, but that was all.  Then I went to the first part of the audition, and after I ran through the exercises for the Musical Directors and Assistant Musical Director, I started singing the solo piece I had prepared for it. I wanted to do something unexpected and that no one else was likely to have sung.  I chose a song called "I Want To Walk With You" by Toni Childs (http://www.youtube.com/watch?v=RJs_CT9B9Sg).  I sang to the bridge, and then I FORGOT THE REST.  That doesn't happen to me.  Completely blank.  I was mortified, and certain that I'd blown it.

Luckily I had not.  I was called back, and managed in the group callback to do two important things: 1. I managed to fool them all by literally BARELY singing aloud during the "blend" segment.  2. I sang the WHOLE song.  Before I started singing my solo piece in front of the whole group, I told those who weren't present the first time what had happened, and then sang it all. 

Longish story short - I was invited to join, and I did, happily.  They found out soon after that I was considerably louder than they thought.  Luckily for me, they kept me in, and I made some of my best, best friends there.

In my last year, one of our guest groups sang a song called "Mary Anne" that my attached-at-the-knee friend and I loved.  However, we did not love the guest group that sang it, so we floundered about for years wondering who wrote the song originally.  Two years later, when I worked at Borders running the music section, someone picked out a CD to play in the store one day that I had not heard of, the debut album of Marshall Crenshaw from 1982.  It's a pop confection, it's beautifully written - very Beatles-ey, Joe Jackson-ey, etc.  Not my normal, harder rock cuppa, but I have always been a sucker for great pop songs.  There it was.  "Mary Anne" - finally!  I called my friend, bought the CD, and lived happily ever after, sonically. 

Sometimes, music draws me down.  This album lifts me up, and I love knowing there is something I can pull up and listen to that is guaranteed to brighten my spirits. 

Here's some more information on Marshall Crenshaw, who is phenomenal.  I hope you have something just as simple and beautiful that picks you up when you are down.

http://en.wikipedia.org/wiki/Marshall_Crenshaw

Miss Christy Day

Today is Miss Christy Day!  In our house, that is the anniversary of our nanny's first day with us. 

Christy has been working with us and for us for 7 years now.  It's amazing to me that it's been that long so fast!  The day she came to interview, we received a phone call from her 20 minutes before her interview time.  "Where do I go?" she asked.  I tried to give her directions.  She hung up after the first few sentences.  Two minutes later, she called back, with a similar outcome.  It happened EVERY TWO MINUTES for the next fifteen.  I was already exhausted and I hadn't even met her yet.  It got so frustrating that we tried to cancel the interview.

No luck.  She came anyway, and it turns out that we were the lucky ones.  Christy had a special needs daughter with similar problems to Connor's.  She spoke to us about her May-May, and how she cared for her.  Then she asked if she could hold Connor, and she knew immediately what to do with him.  We hired her.

On her first day, she arrived early, we headed to work, and I called home at least 4 times to check in.  At the end of the day, she told us that Connor had vomited all over her at lunch.  She cleaned them both up, and moved on.  The second day, he did the same thing.  We couldn't believe she kept coming back.  The third day, she was ready for him, and now it's been years since he's been able to pull that trick on her.

When Drew and Tucker were born, Christy was the first non-medical, non-family to hold our boys.  She has helped raise them from their first days, and every evening, when she heads to the door, they holler out "HUG AND KISS" and drop whatever they are working on to go hug and kiss her good-bye.  This morning, when she came up the steps to the porch, Tucker crouched on the sofa by the door.  When she opened the door, he sprung up and yelled, "Happy anniversary, Miss Christy!"  She taught them both their alphabets at a very young age, and counting too.  For children who spent a large portion of their developmental stages with a caregiver for whom English is a second language, they have enormous, at times hilarious vocabularies.  Their success is her success, and she lets them know how proud she is of what they can do.

In a year, Tucker will be going to kindergarten and we won't need a full-time nanny anymore.  I do not know how life will be without her.  She is a part of our family now, and not seeing her every day will be so strange to all of us.  I know Connor will miss her.  They have a very special bond.  Two Christmases into our time together, she brought gifts for the two boys (No Tucker yet) and when we sat together to exchange gifts, she broke down crying about how much she loves our boys.  I know they are not perfect, and that at times they are bad for her, just as they are for us, but for all my boys Miss Christy is as constant as the sun.  We will be lucky to have another year with her, and then help her find a new family who needs her special skills.  And hopefully, see her every once in a while so she doesn't forget us.

It's been so loooooooooooooooong!

Apologies for the absence...we had some travel that didn't go quite as smoothly as we wanted, and then recovery, and then, you know, life.

But we're back.  Connor has started summer school, his last weeks in the old school before his transition to his new school in the fall.  It appears to be going well - the notes from his teacher are telling me that he's engaged and making friends with new classmates-to-be, and I can tell that his IEP goals are being pursued even in summer school.  He's tired in the afternoon, so they must be making him work hard during the mornings!

The other boys were intrepid travelers. For boys who had only flown 90 minutes at a time before (Drew) or not at all, to manage the 20+ cumulative hours of flying with relatively calm demeanors, sitting placidly with their seatbelts on, and most importantly, not screaming, is pretty impressive. We had several screamers around us on our way home.  At one point, I lifted my head over the boys to catch Lee's eyes, and I mouthed to him, "Our kids?  They are pretty awesome," and he nodded. 

Now I'm trying to get re-upped with work, which was insanely busy before I left, and now has slowed down so much I'm at a loss as to how to reboot it.  But I'm trying, and will have it figured out soon.

I've also been asked to write a guest blog for an old and dear friend, and I'm terrified.  But I said yes.  Time to face the fears and write the piece.  Well, take a different thing I've been writing and remodel it for his use. Keep you posted.

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. 

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. 

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.