Let me tell you about someone else's crap for a change

On Wednesday, when the rest of my kids started school my friend M. and I were in the library when a little girl we both know was ushered into the room where the 3rd and 4th graders were davening.

"Isn't she in second grade?" my friend asked.

"Yeah, but I think maybe they moved her up a year..." I said, but I couldn't remember the details. Later I realized that they had actually moved her up earlier in her school career, and that was what I had been thinking of, but I never got around to following up on the thought.

Today, my husband saw her mother, and she mentioned that they had, indeed, moved their daughter up to the third grade. Why?

Well, this beautiful little girl and her biological brother were adopted from Russia a few years ago. And it turns out that someone, somewhere along the way, LIED ABOUT THE GIRL'S AGE, because they were afraid that the parents wouldn't want to adopt her if they knew her real age. So they made her a year younger.

I don't know if it's because I'm off my meds this month, but it made me cry. It also infuriates me.

Anyway, her parents recognized that moving her up will be a little bit difficult at first, but they are confident she will rise to the challenge.

The world is kind of a sucky place sometimes, n'est-ce pas?

UPDATED Thoughts on the First Day of School

The alarm went off at 5:45 a.m. D., of course, had already been awake for quite some time; I vaguely remembered hearing him talk to my mother-in-law. It was pitch back outside. Mr. WG agreed to shower first, thank God.

By 6:10, I was showered and dressed and came out for coffee. D. was sitting and eating yogurt, blissfully unaware of what was about to happen. He finished breakfast, and we got him dressed and ready, mentioning "yellow bus" and "new school" approximately every 15 seconds.

At 6:37, the bus pulled up outside, and Mr. WG loaded D. on and got him buckled. We raced to our car and followed the bus as it picked up one more child, and we were on our way to school.

I got a very sweet text message from a friend who saw the bus in the neighborhood and wished us good luck.

D. got off the bus fine, and we walked into the building with him.

It was chaos. No one seemed to know what was going on, and there were so many people. I tried to keep breathing.

After about 15 minutes, the speech therapist happened by and asked us if we wanted to take D. to the cafeteria for breakfast with the other students. We did that, but the chaos was even more pronounced there, punctuated by crying children wandering aimlessly without their parents.

Finally, the temporary teacher -- they have found a new teacher who has to be trained and will start within the next two weeks -- came and took D. and his two bus friends back to the cafeteria, sat with them at a table, got them their breakfast, and took them through eating it. She helped D. clear his tray, and then they all went to class. The non-bus kids were already in the classroom. The teacher, who is really the multiple impairment (MI) teacher, was pulled out to meet the parents of her real students, the ones to whom she will return in two weeks, and the speech therapist came in to run the class for a few moment.

The speech therapist speaks Spanish as his mother tongue. "Hello," he said warmly to the students. "I am Mr. D. I am your speech terapist." That's not a typo, people, he doesn't pronounce th. There's a joke there somewhere, I'm sure.

He started by inviting each child to come up and say "Hello, my name is…" to the class. D. refused, but at least he did so verbally. "No," he said the first time he was asked. When pressed, he told the teacher, "Stop it. Go away."

The temporary teacher came back in, and we figured we'd leave. D. of course strenuously objected to this plan, and when we left, he was sobbing. I was pretty close to sobbing myself, because the chaos just left me feeling like we had just left our son in the care of people who could not POSSIBLY take care of him.

I will speak to the teacher today during her planning period at 1:15, and I know you will all be pulling for D. as hard as I am, so maybe our combined good wishes will somehow reach him, and this will not traumatize him permanently.

It's 9:30 now, so I've been up almost four hours. So, basically, it's lunchtime, and I could have a classy lunch, with a glass of wine, right?

Cheers.

UPDATE: I spoke with the teacher. D. cried for 30 minutes, and he threw himself into it with great gusto. But after that, he calmed down and has been having a good day. The teacher reported that he ate his entire lunch. Shocker, I know. On a not-so-great note, the teacher told me that all the staff was commenting on D's size. Um, yeah, he has an OVERGROWTH syndrome. Did anyone READ HIS FILE? Sigh....But! bright side! He is not crying now! Hooray!

Etiquette on the Internet

Dear Internet,

I could use some advice.

Baby J's third birthday is fast approaching. I KNOW. At any rate, this birthday gets a larger party than normal, because we will cut his hair for the first time.

When we did this for D., we had a lovely party -- we invited about 20 families, had a barbecue at our house, and generally kept the focus off D., because he couldn't have handled being the center of attention with so many people around.

We will likely do something similar for Baby J. We sent out lovely printed invitations for D's party, and we did, against all our good upbringing, state "No gifts please." This was only moderately useful, because a lot of people flat out ignored it and brought gifts.

Internet, my children are so, so fortunate and they have a lot of crap already. I cannot in good conscience invite all the people I want to invite if they are going to bring gifts.

The immediate and obvious thing that came to mind was to suggest that in lieu of gifts, people donate to the Sotos Syndrome Support Association. But, I feel this is unfair to Baby J. in that it YET AGAIN puts him in D's shadow.

What do you think, Internet? Should I just resign myself to cramming even more toys into our playroom? Should I suggest that people donate to the charity of their choice? Should I state that all gifts will be donated to Charity X?

Wonderingly,
WG

Can you tell I'm off the Lexapro this month?

On Tuesday morning, I called the pediatrician's office and spoke to the appointments desk. I explained that somehow, we had missed our son's 4-year-old well child check, and we really needed an appointment this week so that he could start school on Monday.

"Well, it'll be difficult," said the woman, "because she's only in tomorrow morning."

"Mmmm," I said noncommittally.

"I guess I can try to squeeze you in at 9 tomorrow," she said after a moment. "But I'll have to check with the doctor."

"Oh, that's fine," I said. "You can ask her. I mean, we hang out." Which is perhaps a slight exaggeration -- I mean, we don't go get our nails done together, but she did invite my family to her son's bar mitzvah and she has attended parties in my home.

Apparently, it was good enough for the appointments lady, because she immediately said, "Oh, then fine. I'll just put you in for 9."

So she did, and the next morning we saw the pediatrician, who told me I could choose my own percentile numbers for D's height, weight, and BMI. She showed me the chart. If the normal growth percentiles were in, say, Texas, D's plot points would be in, say, North Dakota. I'm going with 437th percentile. It feels right.

She praised me for all that we've done with D., the progress he has made, and so on. At one point, she asked me what Dr. F's recommendations were, and I looked at her blankly. "Dr. F?"

"The ENT," she said, and I do, in fact, remember taking D. to several appointments on that floor of the hospital, and then....nothing.

"Yeah, she didn't need to see us again," I said.

Clearly, my system of "scrawl appointments in unintelligible shorthand in my Blackberry" needs some work.

At any rate, D. received five shots. He did not enjoy the actual needle going in and did try to fight back a bit, but he didn't become the hysterical mass of tears that my girls would have been. And then we left, clutching our updated shot records and our stickers.

Several hours later, I swung by D's new school to drop off the forms. I handed them in and asked the receptionist if she could ask D's teacher to come out.

"Oh, she's no longer with us, and we don't know who the new teacher will be," the woman said. I stared at her. Surely this was the beginning of a poorly executed joke.

"What?"

"Yeah, she's no longer with us."

"And you don't know who the new teacher will be?"

"Right."

Perhaps my face showed something akin to ABJECT FREAKING HORROR, because the nurse, who had been reviewing my forms, immediately summoned the special education coordinator to come speak with me.

I remember standing there, repeating, "Oh my God. Oh my God." About eight times. Now, I understand that my reaction may seem a little extreme in a world of, well, all the crap the world has to offer, but I was really thrown for a loop. We've spent the whole summer talking about this woman! And she's gone? And they don't know who will teach the class? The class that starts Monday?

The special education coordinator, who teaches the kindergarten class, came out and invited me to sit down. She explained that the teacher had a family crisis and had to abruptly move out of state. Clearly, she never received the memo that the world is really supposed to revolve around MY needs, but what can you do? Of greater concern is the fact that as of right now, there is no teacher for D's class.

Well, the coordinator said gently, if we don't have someone for Monday, we're going to start the year with a teacher from this school who has 35 years of experience working with special education students. She explained that in a worst case scenario, the students would simply have to adjust to a new teacher twice, once at the start of the year, and once after a new teacher is hired and in-serviced. She assured me that under no circumstances would the school simply hire the first mildly qualified applicant they encountered.

In other words, I think it will be OK, but really, all I kept thinking during those moments at the school was, "Why, God? What the heck did my kid ever do to you? CUT ME A FREAKING BREAK."

Variously

First, I am touched by the number of you who took the time to comment and/or send private email responses about my "go public or not" qualms. I think that's the most email I've ever gotten about a post, and it was a delight to hear all of your opinions. I'm still not sure about what to do. Part of the problem, and what many of you may not know, is that I really do make my living as a professional writer, and lately I've written some stuff on parenting that I'm really proud of, and that I'd really like to share with you. And yet, I'm also kind of a snarky bitch, and I perhaps say things here that I wouldn't say to actual people. In person. Maybe. So. Decisions. To be made. Eventually.

Nextly, I got a call from the public school the other day. "Yes, were you aware that D. has not had all his shots?"

Morons. I called the pediatrician's office and requested shot records for all four kids. As requested on the recording, I spelled our last name and the first names of all four kids. I also requested a letter stating that D. is, in fact, up to date with his shots.

Nine hours later, the nurse called back. She made a big thing about only having one chart, because I only mentioned one child's name. NOT TRUE, but fine. She then allowed as it might take her AN ENTIRE EXTRA DAY to pull those charts, so maybe I should come pick up the forms on Wednesday, not tomorrow. Fine. We hung up. Five minutes later she called back.

"Did you know that D. never had a 4-year checkup?"

"Excuse me?"

"I'm looking at his chart, and he never had a 4-year checkup, so the doctor can't sign the form."

"Wow. How did that happen?"

"The last time we saw him here was in March when he was sick. So there's no way the doctor will sign the form."

Can I tell you that the form was the LEAST of my worries at that point?

I mean, yes, we are D's parents and we have a responsibility to schedule his appointments, but I feel like the doctor's office should SHARE some responsibility, and if a kid never makes it in for a well child checkup, they should, oh, maybe CALL THE PARENTS. And in particular, when we came in in MARCH, because the kid was SICK, why not say then, "Hey, this kid never had a 4-year checkup! Let's schedule that!" OR, how about, when I got the first copy of his shot records in JUNE, why didn't someone in the office look at the record, look at the kid, and say, "Wait a second...."

In my defense, let's remember that I do have a lot of kids, and that D. in particular sees a lot of doctors. And, OK, the office has to MANAGE a lot of kids, but they're getting paid, and the last time I checked, I'm not.

I like my pediatrician, but I HATE her office. Every time I go there I wait AT LEAST 40 minutes. It's not uncommon to wait even longer. Callbacks from the nurse take nine hours. I'm not a fan of that. I'd really like it if the nurse KNEW WHO I WAS, since I do have four kids, and I am there a freaking lot. (Although not, apparently, often enough.)

I don't know. Is this TOTALLY my fault for dropping the ball? Or do they share some of the responsibility?

Unlocking the door

When you become part of the world of special needs, there's a lot of emotional crap that goes along with that. I have a good friend who runs Sibling workshops -- that is, workshops for Siblings of people with special needs. She told me that the most critical thing she does before starting a session is to verify that everyone in the room is, in fact, a Sibling, because there are things said in the room that you don't say otherwise.

It's not just that you don't say them to other people, it's that you don't say them to yourself. You say them in this room, you unburden yourself of these words, these thoughts, these feelings, and then you leave the room, and you go on with your life.

My friend, of course, is a Sibling herself, and so while she is much more aware of my own emotional crap than most other people, she's not a Parent. (That is, she is not a Parent of a child with special needs; she is a parent to four fantastic children.) So while her empathy, like her friendship, is something I treasure, it can only go so far.

In the first days after D's diagnosis, when I really thought I would lose my mind, this blog was my room. It was the place where I could say the things you don't really want to say to yourself about your child.

In the beginning, I was like an addict new to The Program. I went to meetings a couple times a day. And over time, I have gotten the addiction under control. Except for when it isn't, of course.

My purpose has changed over time. I want to be a resource for parents of kids with Sotos syndrome. I want to be a friend to parents of kids with special needs. I want to amuse and entertain.

I am toying with the idea of putting my name on this blog and linking it to my professional blogging endeavors. If I do that, I will probably edit a handful of posts, which bothers me. I'm trying not to think of it as censorship, more as not needing to go out of my way to hurt people, not that all people necessarily deserve that courtesy.

I am NOT toying with the idea of leaving this blog. Not for a second. God, no! I'd rather give up eating.

I would love to hear from any of you who have come out on your blogs, what led you to that decision, and how you feel about it now.

An excess of broken glass

Some days, I am acutely aware that D. is different from other children.

Normally, on a Saturday morning, Mr. WG goes off to shul early, at 7:30. He's home around 9:30, and then he takes the kids back to shul for the social part of things, and then we have lunch and stuff. But last night we had dinner guests who didn't leave until just before midnight, so Mr. WG and I slept a bit later than normal. So Mr. WG didn't go to the early service, so when he went to the later service, he left the kids at home so that he could actually, you know, pray.

At right around the time that Mr. WG would be returning home, D. said, "Mommy, can I go to shul?" And I said, "No, sorry D., you can't." Whereupon D., in his rage, smashed his fist into the floor to ceiling window next next to the french doors leading to my backyard.

The window has a protective film on it, so the glass shattered, but held. I leapt from my chair and shouted at D. to "GO! UPSTAIRS! NOW!" and then focused all my energy on not killing him for the next 20 minutes.

I told my mother-in-law to keep the boys upstairs, and I went to get Mr. WG from shul. He went home to deal with D. I made it there sometime later, and discovered that D. was still in time out, pitifully asking, "Can I come down now?" So Mr. WG went and got him and stood him in front of the window and said, "Look what you did! NOT GOOD!" And D. said, "I'm NOT happy with you!"

And he definitely knows that it was not okay. He told me several times today, "We don't break the window."

I hope his anger frightened him a little bit, because it terrified me. I hope he remembers that fear the next time. I have tried so hard to teach him ways to express anger and frustration, and sometimes I think he gets it. Sometimes he says "I'm VERY ANGRY!" Sometimes he pounds the sofa or a pillow, which I encourage. But boy, howdy, today he reminded me that I can never take his understanding for granted.

Mr. WG pointed out that we started the three weeks by smashing the car window to free Baby J. Erev Tisha b'Av, D. smashed the window of the house. My mother-in-law says it's kapparat avonot (God's way of forgiving some sin, a lighter punishment instead of the full blast you might have deserved.) Funny, because that's how I always think of the Sotos.

What I'm Hearing

The children are upstairs playing. Their grandmother is "watching" them, if by watching, you mean, doing something else entirely and occasionally saying, "Enough! Enough, already!"

D., Baby J. and S., therefore are close to maiming each other. Baby J., who has still not realized that D. could eat him for lunch and have room for dessert, has taken some sort of toy from D.

D: Give it back to me NOW!

Baby J: NO! (Giggles maniacally, and throws the object.)

D: Why did you throw it? Go to time out RIGHT NOW!

Baby J: No!

D: YES! I'm a-gonna count to three. One, two, three, four, five, six, TWELVE!

Now, I know that many parents would be disturbed by the ruckus, and might tear themselves away from their blogging to go and, you know, parent the children. And I know that many other people might read the transcript of my children's conversation and say, "So?" But I also know that you, my faithful readers, read these words, and your hearts soar along with mine as you silently pump your fists and think, "Go, D!"

So Maybe I'm Doing Something Right.

On Friday, S. came home from camp with a note she had written that someone found and thought I might want to see. The note is addressed to our pediatrician. It says,

Dear Dr. N.,

My brother D. has Sotos and I was hoping you could find a cure so that no one will call D. stupid.

Love,
S.